Spiritual Care Recommendations - Full Report

Spiritual care recommendations for people from Black and minority ethnic (BME) groups receiving palliative care in the UK With special reference to the sub-Saharan African population

Authors: Lucy Selman, Dr Richard Harding, Revd Prebendary Peter Speck, Vicky Robinson, Anna Aguma, Ann Rhys, Revd Nana Kyei-Baffour, Prof Irene J. Higginson

With a Foreword by Archbishop Emeritus Desmond Tutu

Sir Halley Stewart Trust

Contact For further information on these recommendations, please contact: Lucy Selman, Research Associate Department of Palliative Care, Policy & Rehabilitation (see below) Email lucy.selman@kcl.ac.uk Tel. 020 7848 5566

This project was supported by: The Department of Palliative Care, Policy & Rehabilitation and Cicely Saunders International King’s College London Cicely Saunders Institute Bessemer Road Denmark Hill London SE5 9PJ http://www.kcl.ac.uk/schools/medicine/depts/palliative Tel. 020 7848 5516 / 5531 http://www.cicelysaundersinternational.org Tel. 020 7848 5580

Foreword

Living with incurable progressive disease such as advanced cancer and HIV infection has implications far beyond the physical dimension. The experience of illness can have a profound effect on one’s spiritual well being, leading to times of crisis as well as opportunities for growth. It is imperative that healthcare services recognise the spiritual aspects of illness, and are tailored to support people spiritually as well as physically. This becomes even more essential in the context of palliative care, which aims to provide what Dame Cicely Saunders described as ‘total care’ for patient and family.

One of the strengths of the UK is its true diversity, which brings with it a myriad of opportunities and challenges. As demonstrated by recent NHS publications, UK health services need to be able to meet the needs of a population which is varied in terms of culture, religion and ethnicity. However, until now there has been little explicit guidance for the provision of spiritual care for people from Black and minority ethnic groups receiving palliative care in the UK. The recommendations in this report offer a way forward in developing health care services that are truly sensitive to the diverse needs of the communities they serve.

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Collaboration between health care professionals, community and faith groups, with an ongoing commitment to mutual education, training and support, is fundamental to this process.

The examples of good practice contained within this report highlight some of the innovative work already being carried out across the UK to widen access to palliative care, and to develop culturally sensitive services that are able to meet patients’ spiritual needs. However, there remains much to be done. These recommendations provide direction and support, but action from palliative care services and communities is needed at a grass-roots level. The quality markers presented here give clear and practical guidance for service providers to monitor their progress towards the aim of equitable, culturally sensitive palliative care.

I am therefore pleased to support these recommendations, which I believe to be an important step towards meeting the spiritual care needs of a diverse population, including the large numbers of Africans living with incurable, progressive disease in the UK. I hope that palliative care services nationally will adopt and implement the recommendations in this report, leading to a future in which services can meet the cultural and spiritual needs of all patients and families, regardless of ethnicity.

God bless you

†Archbishop Emeritus Desmond Tutu

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Acknowledgements

These recommendations were produced during a project funded by the Sir Halley Stewart Trust.

The recommendations incorporate group work conducted during the Sir Halley Stewart/ COMPASS Symposium on Spiritual Care, 3rd November 2009, which was attended by 30 multiprofessional experts in the spiritual and cultural aspects of palliative and supportive care (see Appendix 3, page 62).

The following members of the project advisory group are acknowledged for their comments on these recommendations: Fr Ezeakor Adolphus, Rev Jennifer Potter, Abena Konadu-Yiadom, and Dr Jonathan Koffman.

We would like to thank all the experts who contributed to these recommendations, the patients and staff in South Africa and Uganda who participated in the original study, and the Sir Halley Stewart Trust for supporting the analysis of the data, the generation of the recommendations and Lucy Selman’s PhD study.

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Contents Foreword ............................................................................................................................................................................. 1 Acknowledgements ......................................................................................................................................................... 3 Contents................................................................................................................................................................................ 4 Executive Summary ......................................................................................................................................................... 6 Overview ........................................................................................................................................................................... 14 Section One: Background ........................................................................................................................................... 16 1

2

Literature review: Spiritual care for BME groups receiving palliative care in the UK ....... 16 1.1

BME population groups requiring healthcare in the UK ....................................................... 16

1.2

Epidemiology of incurable, progressive disease in BME communities........................... 17

1.3

Spirituality in incurable, progressive disease............................................................................ 18

1.4

Palliative care and policy ................................................................................................................... 19

1.5

The need for these recommendations .......................................................................................... 20

Background to the recommendations .................................................................................................... 21 2.1

Aim .............................................................................................................................................................. 22

2.2

Audience.................................................................................................................................................... 23

2.3

Development methods ........................................................................................................................ 23

2.4

Dissemination ......................................................................................................................................... 24

2.5

Structure ................................................................................................................................................... 25

2.6

Good practice examples ...................................................................................................................... 25

2.7

Quality markers...................................................................................................................................... 25

Section Two: The Recommendations .................................................................................................................... 27 1

2

Working with local faith and community groups .............................................................................. 27 1.7

Mutual education and training......................................................................................................... 27

1.8

Referral ...................................................................................................................................................... 28

Spiritual assessment ...................................................................................................................................... 30 2.1

Characteristics of spiritual assessment ........................................................................................ 30

2.2

Types of assessment............................................................................................................................. 31

2.2.1

Screening ......................................................................................................................................... 31

2.2.2

Spiritual assessment................................................................................................................... 31

2.2.3

Formal assessment tools .......................................................................................................... 32 Spiritual care for people from BME groups receiving palliative care

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2.2.4

Choice of assessment tools ...................................................................................................... 33

3

Spiritual resources and care ....................................................................................................................... 36

4

Spiritual care providers ................................................................................................................................ 39 4.1

Role of the spiritual care provider in palliative care .............................................................. 39

4.2

Choice of spiritual care providers by the care team ............................................................... 40

4.2.1

Members of the palliative care team ................................................................................... 40

4.2.2

Spiritual care providers outside the healthcare setting .............................................. 40

4.3 5

6

Support for spiritual care providers.............................................................................................. 41

Cultural sensitivity ......................................................................................................................................... 43 5.1

Culturally competent care ................................................................................................................. 43

5.2

Language and interpreters ................................................................................................................ 44

5.3

Patient and family expectations ...................................................................................................... 44

Organisational requirements ..................................................................................................................... 46 6.1

Implementing the recommendations............................................................................................ 46

6.2

Understanding of spiritual well being and care........................................................................ 47

6.3

Providing patient-centred care........................................................................................................ 47

6.4

Staff support ............................................................................................................................................ 47

6.5

Quality improvement ........................................................................................................................... 47

7

Adoption of the recommendations .......................................................................................................... 51

8

Future research................................................................................................................................................ 52

9

Concluding comments ................................................................................................................................... 53

Glossary ............................................................................................................................................................................. 54 Appendix 1: Summary of the recommendations .............................................................................................. 56 Appendix 2: Quality markers .................................................................................................................................... 60 Appendix 3: Attendees of the Symposium on spiritual care........................................................................ 62 References ........................................................................................................................................................................ 63

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Executive Summary 1.

Introduction The population served by the NHS has changed significantly with the rise in the number of immigrants to the UK over the previous decade. In 1999, approximately 97,000 people were accepted for settlement by the UK government, compared with 149,000 in 2008. According to 2008 figures, the two largest immigrant groups are from Africa (27.2%) and the Indian sub-continent (26.8%).

The Black and minority ethnic (BME) population experiences a high burden of both noncommunicable (e.g. cancer and organ failure) and communicable disease (e.g. HIV infection). It is therefore a group with considerable need for palliative care, which integrates the spiritual aspects of patient care alongside the physical and psychosocial.

Palliative care is defined by the WHO as: ‘an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.’

Health policy in the UK advocates that spiritual care is available to all patients receiving palliative care, recognising that spirituality and religion often play a key role in patients’ experience of serious illness. Many patients report becoming more religious or more spiritual following a diagnosis of an incurable, progressive condition. Religious faith and spiritual belief have been identified as important coping resources.

Often patients wish to discuss their spiritual beliefs with their physicians, and may need spiritual support. Spiritual well being predicts coping with HIV, contributes to quality of life in cancer and heart failure, and protects against ‘death distress’ and end of life despair.

There has been little work to date addressing spiritual care for BME populations, despite indications that some BME groups have a strong reliance on spiritual belief and practice.

In particular, there is little guidance for palliative care services on how to meet the spiritual and cultural needs of people from BME groups. Specific challenges include a lack of evidence to inform service provision (e.g. evaluated service models and spiritual care services), and barriers to BME groups accessing palliative care (e.g. mistrust of medical institutions, fears of racism and misperceptions of palliative care).

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The recommendations offered in this report aim to fill this gap in policy guidance. They combine three subjects identified by the NICE Guidance Improving Supportive and Palliative Care for Adults with Cancer (2004) as research priorities in palliative care – spiritual support, making services more sensitive to cultural differences, and improving care for underserved groups – hence adding to and building on Department of Health work in these key areas.

2.

2.1.

Aim, audience, development and structure Aim The project aimed to inform the provision of spiritual care for people from BME groups receiving palliative care across the UK by providing evidence-based guidance for palliative care service providers.

2.2.

Audience The intended audience includes palliative care service providers, spiritual care providers working with people from BME groups (including NHS chaplains, hospice spiritual care providers and community faith leaders), and healthcare policy makers, in the UK and globally.

2.3.

Development The recommendations were generated during a project entitled ‘Spiritual care for patients from sub-Saharan Africa receiving palliative care in the UK’. The project aimed to translate findings from a study conducted in South Africa and Uganda to the UK context.

The study investigated patients’ spiritual well being and the provision of spiritual care at four palliative care services in South Africa and one in Uganda. The data (in preparation for publication at the time of press) comprises 72 qualitative interviews with patients receiving palliative care; survey data on spiritual well being from 285 patients; 21 interviews with spiritual care providers; data from four seminars attended by spiritual care providers, local faith leaders and palliative care staff; and interviews with the four research nurses who conducted the patient interviews.

The subsequent UK-based involved working with an expert Advisory Group of palliative care researchers and providers, spiritual care providers and public health representatives. The Group considered applicability of the African study findings to the UK context and developed the recommendations on that basis.

The recommendations were developed from during 2009. After initial drafting in collaboration with the Advisory Group, the recommendations were further developed and refined through: critical discussion in a variety of forums, including meetings of Spiritual care for people from BME groups receiving palliative care

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palliative care research and clinical staff, members of the King’s College Hospital Foundation Trust Strategy Group for End of Life Care, and a Symposium on spiritual care held at King’s College London, which was attended by 30 experts in the field.

2.4.

Structure Examples of good practice are included throughout the recommendations. These originate from participants of the Symposium and from the literature, as well as stakeholders known by members of the Advisory Group.

Quality markers associated with each recommendation category are presented throughout. Quality markers are explicitly defined and measurable items referring to the outcomes, processes, or structure of care. Quality markers for spiritual, religious and existential aspects of palliative care are currently lacking. As quality markers are currently adopted voluntarily, they offer a framework for a palliative care organisation to define and track its progress against its own targets.

3.

3.1.

The Recommendations: summary Working with local faith communities

3.1.1. Mutual education and training Operate a ‘shared care’ model of spiritual care Offer mutual education, training and support by palliative care and local community and faith groups on an ongoing basis Encourage BME spiritual leaders/ faith groups to educate members of local palliative care teams regarding the spiritual needs of local BME populations and the resources/ support available Facilitate the above by inviting spiritual leaders to visit the unit and attend training events 3.1.2. Referral Ensure systems are in place and utilised for palliative care teams to refer to local BME spiritual leaders who have been trained in palliative care Raise awareness of palliative care amongst local BME spiritual leaders and in particular of how to refer to palliative care (e.g. via GP)

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3.2.

Spiritual assessment

3.2.1. Characteristics of spiritual assessment Assess spiritual well being/ spiritual needs regularly, with consent and in a way which respects patients’ personal boundaries and needs for information Ensure assessment results in culturally appropriate responses to spiritual need Document all assessments and interventions in patient records and convey important issues to the care team during meetings 3.2.2. Types of assessment Ensure brief and simple screening for spiritual needs is integrated into routine patient assessment on admission; ensure religious affiliation and appropriate faith leader (if applicable) are recorded in patient records, along with other cultural/ faith needs Recognise that patients with no formal religion may nevertheless have spiritual needs Conduct a wider exploration of spiritual history or a formal spiritual assessment once immediate reasons for admission are met Ensure all staff members conducting spiritual assessment are trained to do so Integrate the use of formal assessment tools into screening or spiritual assessment to facilitate the identification of spiritual needs Evaluate the quality of care and engage in ongoing service improvement through using outcome measurement tools and interviews with patients to explore the outcomes of spiritual care Ensure assessment tools and outcome measures are ‘fit for purpose’, i.e. validated, culturally appropriate and acceptable

3.3.

Spiritual resources and care Offer a range of spiritual resources, including: access to a range of appropriate faith leaders, a ‘quiet space’, support groups, one-on-one counselling and non-verbal therapies; document their value and effectiveness in patient records Consider support groups designed for patients from a BME group where there is a large local population Advertise the availability of spiritual care services in a range of formats throughout the disease trajectory (e.g. through leaflets in multiple languages, large print and Braille)

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Document team members’ conversations about spiritual issues with patients in patient records as appropriate, while respecting patient confidentiality Document in patient records the spiritual care services and resources accessed by patients (both in the community and through the palliative care service) and their value and effectiveness for the patient

3.4.

Spiritual care providers

3.4.1. Role of the spiritual care provider in palliative care Recognise diverse roles of the spiritual care provider (SCP): visiting, listening to and speaking with patients; acting as point of referral; liaising and sharing care with community SCPs (with the patient’s permission, and aiming to ensure the role of the palliative care-designated SCP is understood); educating and supporting other members of staff; public education 3.4.2. Choice of spiritual care providers by the care team Recognise that the choice of SCP depends on the individual – sometimes a ‘nonspecialist’ may be the most appropriate person; designated SCPs should support and advise their colleagues as required Match SCP to patient and need (take into account language, ethnicity, gender and religion according to patient wishes) 3.4.3. Support for spiritual care providers Support SCPs through debriefing and access to their line managers, peer support and/ or counseling as needed

3.5.

Cultural sensitivity

3.5.1. Culturally competent care Ensure an ongoing commitment to cultural sensitivity among staff members and as an organisation Recognise the complexity and diversity of culturally specific beliefs and practices Treat the patient as a unique individual; ensure that learning about local cultures and ethnicities is not viewed as a ‘box-ticking’ exercise Explore patients’ and families’ beliefs about illness and the authority of healthcare staff and spiritual leaders on a case-by-case basis

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Try to identify any potentially harmful beliefs related to cultural or spiritual worldview, and present the palliative care perspective sensitively but explicitly Among staff members, encourage awareness of organisational processes and their own worldview and relationship to others, and foster a commitment to being empathetic, open-minded and reflective Ensure confidentiality is upheld by all members of staff and the community involved in patient care, including local spiritual leaders 3.5.2. Language and interpreters Recognise that concepts have different meanings in different languages and cultures, and discuss sensitive issues with care Ensure access to trained and supported interpreters 3.5.3. Patient and family expectations Explore patient and family expectations, identify areas of potential conflict and handle care provision with sensitivity

3.6.

Organisational requirements

3.6.1. Implementing the recommendations Ensure an ongoing commitment to education, training and support in the field of spiritual care Raise awareness of spiritual dimensions of the illness experience; train and support all palliative care staff in basic spiritual care provision Recognise and accommodate the organisational implications of Recommendations 1-5, e.g. foster relationships with local faith leaders/ community groups, document spiritual well being and resources in patient notes 3.6.2. Understanding of spiritual well being and care Consider spiritual well being intrinsic to quality of life and broader than religious belief and practice Consider spiritual care to be as important as other dimensions of care 3.6.3. Providing patient-centred care Refer patients to spiritual care with their permission and as part of routine practice, according to need

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Ensure inpatient units and outpatient and home care services are able to accommodate the religious needs of patients from BME groups (e.g. religious rituals, visits by members of faith community) 3.6.4. Staff support Take into consideration and provide for the spiritual well being of staff 3.6.5. Quality improvement Commit to ongoing quality monitoring and improvement in spiritual care (e.g. through audit of outcomes and meeting quality markers)

4.

Adoption of recommendations

Adopting these recommendations, and implementing strategies to meet the suggested quality markers, may potentially benefit patients, communities and palliative care services in a number of ways; for example, by leading to: Increased awareness of, and referral to, palliative care within the BME community, through local faith groups and spiritual leaders.

Improved communication, and a mutually supportive relationship, between local spiritual leaders and faith groups and hospice and palliative care teams.

Local spiritual leaders who are better informed about palliative care needs, the philosophy of palliative care and wider spiritual aspects of the illness experience, and who are supported in their work through palliative care teams.

Palliative care teams who are better informed about the needs of people from BME groups, and are able to refer to trained spiritual care experts in the local community when necessary.

Better assessment of spiritual well being in clinical practice. While some palliative care practitioners express fears that formal assessment tools may turn spiritual care provision into a ‘box-ticking’ exercise, there is a strong argument that good assessment of spiritual well being is needed in order to screen for spiritual distress, and identify patients who may require support in this area.

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5.

Future research

While these recommendations aim to assist services with meeting the spiritual needs of diverse communities, research into the provision of culturally sensitive spiritual care is urgently needed.

The following areas are identified as research priorities in this field: 1. Application, adoption and evaluation of the recommendations and quality markers presented here, using formal evaluation criteria.

2. Evaluation of the effectiveness of spiritual care models and interventions, and techniques and methodologies used to improve uptake of palliative care services by people from BME and other disadvantaged groups, using both qualitative and quantitative methods and measuring key outcomes (e.g. spiritual well being).

3. Evaluation of alternative methods of identifying and assessing spiritual care needs.

Promising methods are likely to combine the use of good formal assessment tools with the staff training and support needed in order to foster the skills and confidence to engage with the spiritual and religious resources available to patients and families.

4. Identification and psychometric evaluation of existing measures of spiritual well being (and related constructs) that may be appropriate for use in multi-cultural palliative care populations. Several existing tools have been criticised in the literature for conceptual imprecision, cultural and religious bias, and psychometric problems such as floor and ceiling effects.

5. Adaptation and validation of identified measures in ethnically diverse palliative care populations in the UK. As spiritual well being is embedded within culture, measures used in clinical practice and research need to be developed and validated in the specific populations in which they are to be utilised.

6.

Concluding comments These recommendations aim to assist in the development of palliative care services which are able to meet the spiritual care needs of a population that is increasingly diverse in terms of culture, spiritual beliefs and practices, and worldview.

It is hoped these recommendations will contribute to a much-needed debate on the best construction of a multi-faith response to incurable, progressive illness that meets the needs of patients and families.

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Overview This report and the recommendations presented herein are a result of the Sir Halley Stewart Trust-funded project, ‘Spiritual care for patients from sub-Saharan Africa receiving palliative care in the UK’. The project translated findings from a study conducted in South Africa and Uganda to the UK context, through collaboration with an expert advisory group and consultation with a large group of diverse stakeholders.

The report comprises two main sections (Section One: Background and Section Two: The Recommendations) with supporting Appendices. Section One presents the context for the recommendations. A review of the literature shows that BME groups have worse access to health care and poorer health outcomes than the general population. In recognition of the need to accommodate diverse faith needs in healthcare, the NHS has recently released a number of publications on related areas. However, although efforts to improve access to palliative care have been reported, there is little existing guidance on how services can be tailored to meet the needs of a population which is increasingly diverse in terms of culture, ethnicity and spiritual beliefs and practices.

Section One goes on to describe the background to the recommendations and their aim, development and structure. The purpose of the recommendations is to inform the provision of spiritual care for people from Black and minority ethnic (BME) groups receiving palliative care in the UK by providing evidence-based guidance for palliative care service providers. They are designed to be broad and adaptable to different local conditions, and are likely to be of particular relevance in metropolitan areas, where populations are particularly diverse. The intended audience includes palliative care service providers, spiritual care providers working with people from BME groups (including NHS chaplains, hospice spiritual care providers and community faith leaders), and healthcare policy makers, in the UK and globally.

The expert advisors who collaborated on this project through the Spiritual Care Translational Research Group included representatives from NHS chaplaincy, palliative care, public health and research. The recommendations were also critically discussed and developed in a number of professional forums, including a Symposium on spiritual care held at King’s College London in November 2009. The recommendations include national examples of good practice in each category. Building on the recent work of the End of Life Care Strategy, they also include quality markers for the provision of culturally sensitive spiritual care.

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The recommendations themselves are set out in Section Two.1 They are divided into six categories: 1. Working with local faith and community groups: A ‘shared care’ model of spiritual care is described, in which palliative care services collaborate with diverse local agencies as appropriate, and facilitate mutual education, training, support and referral.

2. Spiritual assessment: The process and importance of screening for spiritual distress, conducting a spiritual assessment and choosing a formal assessment tool are discussed.

Evaluation of the outcomes of spiritual care is seen as an important way to monitor and improve the quality of care.

3. Spiritual resources and care: The range of spiritual care services that may assist patients are described, along with means of advertising services to ensure access and documenting the value of services to patients.

4. Spiritual care providers: The range of roles played by the spiritual care provider in the multi-professional team are described, including liaison with members of the community and the education and support of other members of staff. Choice of an appropriate spiritual care provider is recognised to be dependent on the individual patient, with ‘non-specialists’ at times most suitable.

5. Cultural sensitivity: A model of culturally competent care is described which aims to ensure patients’ individual needs are met while engaging with potentially harmful beliefs in a sensitive but effective way.

6. Organisational requirements: The organisational factors necessary in order to implement the recommendations are outlined, including providing patient-centred care, taking into account the spiritual well being of staff, and committing to ongoing quality monitoring and improvement in spiritual care (e.g. through meeting the quality markers defined throughout the recommendations).

Section Two ends with some thoughts on the adoption of the recommendations and what their implementation may achieve, highlights areas for future research, and offers some concluding comments.

1

A more detailed summary of the recommendations is available in table form in Appendix 1, page 56.

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Section One: Background 1 Literature review: Spiritual care for BME groups receiving palliative care in the UK Despite health policy in the UK advocating that spiritual care is available to all patients receiving palliative care (1), there is little guidance for services on how to meet the spiritual and cultural needs of people from Black and minority ethnic (BME) groups. Specific challenges faced by services include a lack of evidence to inform service provision (e.g. evaluated service models and spiritual care services), and barriers to BME groups accessing palliative care (e.g. mistrust of medical institutions, fears of racism and misperceptions of palliative care).

This review describes the need for palliative care in BME communities, the role of spirituality in illness, and relevant healthcare policy in the UK, in order to contextualise the recommendations presented in Section Two.

1.1 BME population groups requiring healthcare in the UK The population served by the NHS has changed significantly with the rise in the number of immigrants to the UK over the previous decade. In 1999, 97,115 people were accepted for settlement by the UK government, rising to 179,120 by 2005 (2).2 In 2008 there were 148,735 legal immigrants to the UK, with the two largest population groups being from Africa (27.2%) and the Indian sub-continent (26.8%). Immigrant populations are often concentrated around urban areas; for example, in 2001, 78% of Black Africans in the UK lived in London (3).

Faced with the changing nature of the UK population, health care services struggle to find practical ways to provide appropriate care for patients and families from BME groups. Patient surveys have shown that BME groups in general report a worse experience of treatment and care and poorer health outcomes than White patients. For example, the 1999/ 2000 Department of Health national survey of patients with cancer found that Black and South Asian respondents, nearly half of whom were in London, were more likely than average to report unfavourably on their experiences (4). With respect to waiting times, understanding explanations, and confidence and trust in doctors and nurses, both Black and South Asian patients were more likely than all London patients to have found a ‘problem’ with their care.

2 These figures exclude EEA nationals, Swiss nationals from 1 June 2002, nationals of Cyprus, Czech Republic, Estonia, Hungary, Latvia, Lithuania, Malta, Poland, Slovakia and Slovenia from 1 May 2004 and nationals of Bulgaria and Romania from 1 January 2007.

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1.2 Epidemiology of incurable, progressive disease in BME communities Cancer has been found to be less prevalent among the UK's BME communities than in the general population (5). However, in 2009 the National Cancer Intelligence Network (NCIN) produced the first national in-depth analysis of cancer by ethnicity (6). Their report found that: Black males of all ages were more likely to have a diagnosis of prostate cancer than white males (age standardised Relative Risk (RR) between 1.26 and 2.48, based on different assumptions regarding patients with unknown ethnicity) Black females aged 65 and over were at a higher risk of cervical cancer than white females of the same age. (RR 1.13 - 2.50) Black males and females had higher rates of cancers of the stomach (RR 1.14 – 1.74), liver cancer (RR 1.47 – 2.67), and myeloma than white males and females. (RR 1.79 – 2.80) South Asian men and women had a higher rate of liver cancer than white males and females (RR 1.47 – 2.43) South Asian females aged 65 and over had a higher risk of cervical cancer than white females (RR 1.15 - 2.29) Changes in the incidence and pattern of cancer among BME communities in the UK suggest the need for further research into risk factors, as well as the views of service users and providers, in order to improve health promotion and access to appropriate services (5).

Some BME population groups may also be at higher risk of developing non-malignant conditions, such as organ failure, than White groups. In British South Asian groups, for example, there are higher rates of end-stage renal failure, caused by increased rates of diabetes and hypertension (7). Migrants of South Asian descent worldwide also have elevated risks of morbid and mortal events because of ischaemic heart disease (IHD), one of the primary causes of heart failure (8). In the UK, mortality from IHD in both South Asian men and women is 1.5 times that of the general population (9), and the recorded decline in deaths caused by IHD over the past few decades has not been observed in South Asians (10). These ethnic differences are greatest in the youngest age groups. A study conducted in Birmingham indicates that the risk of heart failure, compared to Europeans, in those aged 60–79 years was 3.1 (95% confidence limits 1.9 to 4.9) in African Caribbeans, and 5.2 (95% confidence limits 3.7 to 7.4) in South Asians (10;11).

Modes of presentation and therapeutic needs may differ by ethnicity, calling for increased awareness of cultural differences in presentation, and for data on the impact of interventions in different ethnic groups (10).

In addition to the burden of non-communicable diseases, recent HIV/AIDS surveillance data have shown dramatic increases in the number of new HIV cases amongst people who acquired HIV through sex between men and women, the majority of whom are from sub-Saharan Africa (12). The Health Protection Agency Report Sexually transmitted infections in black African and black Caribbean communities in the UK: 2008 states that in 2007 there were 2,691 new HIV diagnoses among Black Africans, representing 40% of all new diagnoses in the UK (13). The majority had acquired their infection heterosexually and in Africa. In England in 2008 the Spiritual care for people from BME groups receiving palliative care

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diagnosed prevalence of HIV was 3.7% among Black Africans, nearly 10 times higher than among Black Caribbeans (0.4%) and over 40 times that among the white population (0.09%).

Furthermore, the same report estimates that of all Black African people living with HIV in the UK in 2006, 36% of men and 23% of women had not been diagnosed with HIV and were thus unaware of their infection. HIV+ African people in the UK continue to present late to treatment services and are significantly more likely to present with advanced disease than other social groups (13-15).

1.3 Spirituality in incurable, progressive disease Evidence from the UK and USA suggests that spiritual and religious belief and practice play a key role in patients’ experience of serious illness (16-18). In the UK, King et al. found that 71% of people in a study conducted at an acute hospital had what they considered to be an important spiritual belief, even though many did not express that in a religious way (16). Spirituality and religion may be of particular importance in incurable progressive conditions such as HIV or cancer, a diagnosis of which often has a significant impact on one’s spirituality. In a study of 347 patients with HIV infection in the US, Cotton et al found that 25% reported becoming more religious and 41% more spiritual since their diagnosis, and 50% thought spirituality or religion had helped them live longer (19). Approximately 1 in 4 participants also reported that they felt more alienated by a religious group since their HIV/AIDS diagnosis and approximately 1 in 10 reported changing their place of religious worship because of HIV/AIDS. In the UK, qualitative studies have found that religion and spirituality are important source of support for HIV+ Africans (20-22).

There is also evidence that patients with serious illness wish to discuss their spiritual beliefs with their physicians (23-25) and may have a need for spiritual support. Moadel at el, for example, found that in a group of 248 ethnically diverse cancer patients 42% indicated that they wanted help with finding hope and 40% with finding meaning in life (26). In addition, there is a growing body of evidence suggesting that spirituality and religion have a beneficial effect on a range of patient outcomes. Religious faith and spiritual belief have been identified as important coping resources (27;28), and strength of belief has been found to predict clinical outcome (16).

Spiritual activities such as meditation and prayer have been linked to perceptions of well being among long-term survivors of AIDS (29). Spiritual well being, which can be understood as a continuum from spiritual pain or distress to spiritual wellness or growth, has been found to predict perceptions of living with HIV (30), contribute to quality of life in cancer (31;32) and heart failure (33), and protect against ‘death distress’ (34) and end of life despair (35). Both spiritual well being (36) and positive religious coping (37) are reported to protect from the stress of negative life events, while religiosity has been found to protect against depression (38).

However, a minority of studies have also reported less beneficial effects (39;40), particularly in relation to negative religious coping (37), suggesting that the relationship between spirituality, religion and health is not a straight-forward one. There is also debate regarding the mechanisms by which spiritual well being or practice may influence health outcomes (41;42), although the influence of culture in these areas is acknowledged (43-45). More research is needed in these Spiritual care for people from BME groups receiving palliative care

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areas, but it is clear that spiritual distress can have a profoundly negative effect on patients’ quality of life. Spiritual distress can be defined as the suffering that occurs when a person becomes estranged from the essence of who he or she is (46;47), loses any sense of meaning in life (46;48), becomes demoralized (49) and feels a growing sense of fragmentation or disconnection (48;50). Spiritual distress may result in physical symptoms (46;48;50), such as intractable pain, as well as having psycho-spiritual (46;48;50-52), religious (48;50) and social manifestations (48;50;52).

1.4 Palliative care and policy Given the importance of spirituality in the experience of serious illness, it is appropriate that spiritual care is considered one of the key components of palliative care. Palliative care is defined ‘an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual’ (53). In the UK, as in much of the developed world, palliative care is integrated into the National Health Service (NHS), and this is reflected in national policy. In 2004 the Government published the National Institute for Clinical Excellence (NICE) Guidance Improving Supportive and Palliative Care for Adults with Cancer (1). In common with palliative care guidance globally (54-57), the NICE Guidance stipulates spiritual care provision and assessment. Chapter 7 focuses on the development and provision of Spiritual Support Services for patients and their carers. It stresses that patients and carers should ‘receive support, if sought, to make sense of difficult life events through an exploration of spiritual and existential issues, including an effort to foster hope and promote well-being within an integrated care approach.’

In elaborating this requirement, the following key recommendations for spiritual support are made by NICE (1) (7.11-7.14): Patients with cancer and their carers should have access to different forms of spiritual support, appropriate to their needs.

Patients with cancer and their carers should have opportunities for their spiritual needs to be assessed at various points in the patient pathway, ensuring that spiritual elements of illness are taken into account.

Spiritual care should be an integral part of health and social care provided in all care environments and should be open to similar levels of scrutiny and supervision as other aspects of non-physical care.

Multidisciplinary teams should have access to suitably qualified, authorised and appointed spiritual care givers who can act as a resource for patients, carers and staff.

They should also have up-to-date awareness of local community resources for spiritual care.

The NICE Guidance also advocates equal access to services and individualised, patient-centred care; however, the Cancer Reform Strategy (58) shows that this has not been achieved. The Strategy recognises that people from BME communities are less likely to access palliative care (59;60), and that religious beliefs and practices are thoroughly embedded within culture (61).

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To improve access and quality of care, the authors advocate ‘planning services which are appropriate to the needs and culture of local communities’, stating ‘Commissioners should therefore take into account religious beliefs when designing services.’ (Point 6.42, p.92)

1.5 The need for these recommendations The need for the NHS to respond to equality legislation and the spiritual and religious needs of a changing population resulted in the publication in 2009 of the Department of Health report Religion or belief: a practical guide for the NHS (62). The guide aims to aid NHS professionals in understanding the importance of religious identity or belief and in appreciating how this has the potential to interact with and impact on health and healthcare delivery. Palliative care and end of life concerns are described as key areas to consider in providing services; however, little specific guidance is provided for palliative care services wishing to improve the spiritual care they provide to BME patients and families.

One of the major barriers to developing guidance for the spiritual care of BME groups is the lack of research in the areas of spiritual care and spiritual well being. A recent review commissioned by the NHS, entitled ‘The Potential for Efficacy of Healthcare Chaplaincy and Spiritual Care Provision in the NHS (UK)’ (63), found very limited research into multi-faith spiritual care, and identified an urgent need for research in this area. Within palliative care, research into spiritual well being and care is still at a developmental stage, despite the recognition that spiritual ‘problems’ need to be identified, assessed and ‘treated’ (53). The concept of spirituality is the subject of major debate (64-69), and the meaning of spiritual well being to patients is not clear (70-72). The majority of studies of spirituality are conducted in culturally- and ethnicallyspecific US population groups, and are not easily transferrable to the UK. While a small number of models of spiritual care and intervention appear in the literature (e.g. (73-76)), the majority were developed in the USA and have not been evaluated. It is not known how appropriate they would be outside of North American populations with specific cultural and religious characteristics. If spiritual care provision is to be evidence-based, further research in these areas and in best practice in spiritual care is essential (77;78).

Currently, there has been little work to address spiritual care for BME groups, including African people affected by incurable progressive living in the UK, despite them being a large and disadvantaged population with a strong reliance on spiritual belief and practice (20-22). These recommendations combine three subjects identified by the NICE Guidance (1) as research priorities in palliative care – spiritual support, making services more sensitive to cultural differences, and improving care for underserved groups – hence adding to and building on Department of Health work in these key areas.

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2 Background to the recommendations These recommendations were generated by a project entitled ‘Spiritual care for patients from sub-Saharan Africa receiving palliative care in the UK’. The project aimed to translate findings from a study conducted in South Africa and Uganda to the UK context, and work together with UK experts to develop spiritual care recommendations on that basis.

The African study investigates patients’ spiritual well being and the provision of spiritual care at four palliative care services in South Africa and one in Uganda. The data being analysed comprises: Survey data on spiritual well being from 285 patients 72 qualitative interviews with patients receiving palliative care 21 interviews with spiritual care providers Data from four seminars attended by spiritual care providers, local faith leaders and palliative care staff Interviews with the four research nurses who conducted the patient interviews This data represents an innovative and large body of work on patients’ spiritual needs and resources, and the role of spiritual and religious belief in the illness experience. Data from spiritual care providers and other stakeholders complements this by documenting experiences of providing spiritual care, the challenges faced in this kind of work, spiritual care providers’ recommendations for how best to meet patients’ spiritual needs, and what works well (and not so well) in the provision of spiritual care for this patient group.3 In drafting the recommendations, findings from all data sources were taken into account; qualitative data from patients, spiritual care providers and palliative care staff were particularly valuable.

The UK project involved working with an advisory group, the Spiritual Care Translational Research Group (henceforth ‘the Group’), to consider applicability of the African study findings to the UK context and develop recommendations on that basis. The Group comprised local researchers, palliative care providers, spiritual care providers and public health representatives, as follows: Lucy Selman Dr Richard Harding Dr Jonathan Koffman Revd Prebendary Peter Speck Vicky Robinson Ann Rhys

3

Research Associate & PhD student, Dept Palliative Care, Policy & Rehabilitation, KCL (Project Lead) Senior Lecturer, Dept Palliative Care, Policy & Rehabilitation, KCL (PI) Lecturer, Dept Palliative Care, Policy & Rehabilitation, KCL Hon Senior Lecturer, Dept Palliative Care, Policy & Rehabilitation, KCL Consultant Nurse, Guy’s & St Thomas’ NHS Trust Community Clinical Nurse Specialist, Guy’s & St Thomas’ NHS Trust

Findings from the African study will be published in 2010-11.

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Revd Nana Kyei-Baffour Fr Ezeakor Adolphus Revd Jennifer Potter Abena Konadu-Yiadom Anna Aguma

Chaplain, Guy’s & St Thomas’ NHS Trust Chaplain, King’s College Hospital Minister, Wesley’s Chapel Leysian Missioner, Wesley's Chapel & Leysian Mission Senior Health Promotion Specialist - African Communities, NHS Lambeth & Southwark PCT

The Group played a central role in formulating the recommendations, which were developed and finalized through a series of consultation phases described below (2.3 Development methods).

Although the data that informs these recommendations is from South Africa and Uganda, it was agreed by the Group at the beginning of the consultation process that findings regarding spiritual care needs were relevant more widely to other sub-Saharan African groups, which share similar worldviews relative to European cultures. While it is acknowledged that findings from sub-Saharan Africa are not always directly transferrable to the UK, when developing the recommendations every effort was made to consider the findings in the light of the palliative care and healthcare policy context of the UK. At a later stage in the consultation process it became clear that the recommendations had applicability to diverse BME groups in the UK beyond the sub-Saharan African population.

Although the recommendations were developed on the basis of evidence from sub-Saharan Africa, they have therefore been formulated to be inclusive and flexible enough to apply to the spiritual care of people of diverse ethnicities, and may have relevance internationally as well as in the UK. These recommendations are presented in response to the critical need for spiritual care guidance, and as a contribution to the ongoing process of improving the spiritual care of people from BME groups receiving palliative care. In applying the recommendations and incorporating them in training programmes it is hoped that palliative care services will make their own adaptations based on their local context. In the future, revised drafts of the recommendations will take into account the lessons learnt during adoption and application at the service level, highlight further examples of good practice, and further develop suggested quality markers.

2.1 Aim These recommendations aim to inform the provision of spiritual care for people from BME groups receiving palliative care in the UK by providing evidence-based guidance for palliative care service providers. The recommendations are designed to be broad and adaptable to different local conditions, so that they are applicable across the UK. However, they are likely to be of particular relevance in metropolitan areas, where the populations served by palliative care services are particularly diverse in terms of culture, ethnicity and religion.

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In addition, the authors hope these recommendations will contribute to a much-needed debate on the best construction of a multi-faith response to incurable, progressive illness that meets the needs of patients and families.

2.2 Audience The intended audience for these recommendations includes palliative care service providers, spiritual care providers working with people from BME groups (including NHS chaplains, hospice spiritual care providers and community faith leaders), and healthcare policy makers, in the UK and globally.

2.3 Development methods The development of the recommendations involved the following steps, undertaken during 2009: 1. The Spiritual Care Research Translational Research Group was convened at King’s College London (KCL). Preliminary findings from the African study were presented to the Group and discussed.

2. On the basis of the African data and the Group’s discussion, the first draft of the recommendations was written and circulated to members of the Group. All members submitted comments on the first draft, appraising their local acceptability and appropriateness in the UK context. In particular, Group members were asked to consider: o o o o

The practicality of the recommendations To what extent the recommendations contribute to current practice and/ or policy Whether anything relevant was omitted from the recommendations Which recommendations were ranked as most important and why

3. The comments of the Group were then incorporated into a second draft which was critically discussed in three different forums: the next meeting of the Spiritual Care Translational Research Group, a Clinical Update meeting of KCL research staff and King’s College Hospital palliative care clinical staff, and a meeting of the King’s College Hospital Foundation Trust Strategy Group for End of Life Care.

4. After these meetings the third draft of the recommendations was formulated. This was presented for discussion at a Symposium on spiritual care for people from sub-Saharan Africa receiving palliative care in the UK, held at King’s College London on November 3rd 2009 and attended by 30 experts in the field (see Appendix 3, page 62).

5. After the Symposium, a fourth version of the recommendations was formulated. This was discussed at a subsequent meeting of the Group.

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6. Contacts were emailed to provide good practice examples for the recommendations. The comments of the Group along with the good practice examples were incorporated into a fifth draft of the recommendations.

7. The fifth draft was circulated to members of Group and Prof Irene Higginson for final comments.

8. Comments were incorporated and the final version agreed by all members of the Group.

2.4 Dissemination These spiritual care recommendations will be disseminated nationally and internationally through: Collaboration with national associations, policy makers, NGOs and palliative care service providers, including attendees of the Symposium on spiritual care (see Appendix 3, page 62) Publication in a peer-reviewed journal (manuscript in preparation) Presentations at national and international professional meetings and academic conferences (e.g. Selman et al, Palliative Care Congress 2010 and European Association of Palliative Care conference 2010)

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2.5 Structure The recommendations are presented in six categories with sub-categories, as follows: 1. Working with local faith and community groups

1.1. Mutual education and training

2

2. Spiritual assessment

2.1. Characteristics of spiritual assessment 2.2. Types of assessment

3 4 5

3. Spiritual resources and care 4. Spiritual care providers

1.2. Referral

4.1.

4.2.

5. 5. Cultural sensitivity

6. 6. Organisational requirements

4.3.

5.1.

5.2.

5.3.

6.1.

6.2.

6.3.

6.4.

6.5.

Role of spiritual care provider in palliative care team Choice of spiritual care providers by the palliative care team Support for spiritual care providers Culturally competent care Language and interpreters Patient and family expectations Implementing the recommendations Understanding of spiritual well being and care Providing patient-centred care Staff support Quality improvement

Education, training and support on an ongoing basis are themes that cut across all six recommendations. For a summary of the recommendations by category, see Appendix 1, page 56.

2.6 Good practice examples Examples of good practice have been incorporated into the recommendations to inform service provision. The examples come from participants of the Symposium and from the literature, as well as colleagues and services known by members of the Spiritual Care Translational Research Group.

2.7 Quality markers Quality markers associated with each recommendation category are presented throughout.

Quality markers (also called quality indicators) are explicitly defined and measurable items referring to the outcomes, processes, or structure of care (79). As quality markers are currently Spiritual care for people from BME groups receiving palliative care

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adopted voluntarily, they offer a framework for a palliative care organisation to define and track its progress against its own targets. Quality markers emphasise communication across sectors and professional disciplines, with the aim of achieving a seamless service organised round the individual (80).

A recent systematic review found few quality indicators for spiritual, religious and existential aspects of palliative care, and none at all for cultural aspects (81). The 2009 US symposium on quality indicators in end- of-life cancer care reports similar findings (82).

In light of the lack of quality markers in the spiritual and cultural domains and in order to guide service evaluation, quality markers have been suggested for each of the recommendations presented here (tabulated in Appendix 2, page 60). By including quality markers the recommendations build on the work by the End of Life Care Strategy, which advocates quality markers as a way to support the delivery of improvements in care, but acknowledges that spirituality is ‘a significant gap’ in current guidance (80).

In line with recent guidelines (83), the proposed quality markers are: Based on evidence and expert opinion; Supported by stakeholders; Publicly reported (in this document as well as through conference presentations and planned journal publication); and Amenable to feedback from health care services and professionals.

The quality markers are suggested as a way for services that are committed to implementing the recommendations to track their progress. It is expected that service providers will prioritise recommendation categories according to their own aims, and develop individualised and more detailed quality markers based on local context (for example, numerators and denominators are required to make some of the markers more explicit (81)). As such, the quality markers aim to guide service providers in developing their own set of achievable yet aspirational indicators for audit purposes.

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Section Two: The Recommendations 1 Working with local faith and community groups Collaboration with local spiritual leaders, faith and community groups is central to ensuring good quality spiritual care reaches all who require spiritual support, particularly in BME communities. A ‘shared care’ model of spiritual care provision is recommended, in which: The palliative care team aims to meet the spiritual needs of patients, their friends and family by working together with sources of support already available in the local community.

The spiritual care provided by faith groups is recognised and built upon, and the significant influence spiritual leaders may have (for example, in the sub-Saharan African community) is harnessed.

Mutual education and training are facilitated (see 1.1., below), and palliative care providers and members of local faith and community groups are enabled to support each other.

There is awareness of palliative care in the local community, including how to refer to and access service providers.

Shared care models cover diverse agencies and a broad range of people; the specific form a shared care model takes will depend on the local context.

1.7 Mutual education and training Ongoing mutual education, training and support by palliative care representatives and members of local faith and community groups are recommended in order to foster a collaborative approach to spiritual care provision.

In particular, it is recommended that: Training and education in palliative care, in the form of workshops, courses or work placements, is advertised among local faith and community groups, and attendance is encouraged.

Representatives of local faith groups (including pastors, imams, rabbis and leaders of other religious and spiritual groups), and community groups (such as NGOs for women, the elderly and young people), are identified and invited to participate in tailored education and training courses (Box 1).

Spiritual leaders and members of community and faith groups are encouraged to educate members of local palliative care teams regarding the spiritual needs of the local BME populations in the community, and the resources and support available.

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Palliative care organisations facilitate staff education and training by inviting BME community leaders to visit the palliative care unit, meet the care team and attend events organised through the hospice, hospital or community team.

Box 1: Training and education for spiritual leaders In order to establish an effective ‘shared care’ model of spiritual care, it is recommended that training and education programmes are designed for spiritual leaders in the community (who may or may not belong to organised religions). Effective training programmes will aim to: Raise awareness and counter misperceptions of palliative care (including its philosophy, purpose, intended recipients, and access to and location of local teams) Raise awareness of, and advocate against, forms of spiritual counselling that are potentially harmful (for example, advice which discourages patients from taking prescribed medical treatment), in order to avoid forms of spiritual care which are inappropriate in the context of palliative care Educate spiritual leaders about the diseases which bring people to palliative care (e.g. types of cancer, organ failure, motor neurone disease, multiple sclerosis and HIV-related illnesses), and common symptoms (pain, breathlessness, depression, worry, etc.)

Discuss wider spiritual aspects of incurable, progressive illness and the provision of palliative care Train spiritual leaders to recognise and assess wider existential needs (which may not be overtly religious) Educate and support spiritual leaders in managing patient and family expectations, maintaining confidentiality, providing information, and communication skills Support spiritual leaders in meeting patients’ and families’ spiritual needs, through access to the advice and support of the palliative care team when necessary (including telephone contact and referral) Offer continuing professional education (introductory to advanced levels), professional accreditation and volunteer orientation for spiritual leaders in the community

1.8 Referral In order to improve access to palliative care by BME groups and implement a shared care model of spiritual care it is recommended that: Referral systems are in place for specialist and non-specialist palliative care providers in hospitals, hospice and the community to refer to local BME spiritual leaders trained in palliative care, and that such referral systems are utilised. Referral should always occur with the patient’s consent (or, where unable to provide consent, with the consent of the family or primary carer) and with due respect for the patient’s confidentiality and

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autonomy. Referral may occur through a designated chaplain, spiritual care co-ordinator or social worker in the care team.

Local BME spiritual leaders and community groups are sensitized to palliative care, aware of what the palliative care team provides and of how to refer to palliative care.

BME spiritual leaders who have received training in palliative care should be familiar with the referral system and know to refer people with suspected life-limiting conditions in the community to their GP or other healthcare professional for further referral to palliative care.

Good practice example: Working with local communities St Joseph’s Hospice, London St. Joseph’s Hospice in East London serves a highly diverse catchment area: 49% of the population are from BME groups, with the most prevalent ethnicities being Bangladeshi (14%) and Black African (9%) (Office of National Statistics, 2004). This diversity presents a number of challenges for the hospice, which seeks to provide religious and culturally sensitive care that is acceptable and accessible to all who could benefit from it.

To this end, St. Joseph’s has a programme of engagement with local ethnic minority communities, as a means of learning more about their preferences and needs around end of life care, and how best the hospice can work with local communities to improve their experience of dying, death and bereavement.

Since 2007 the hospice has been working in partnership with a community development organisation, Social Action for Health, which works alongside marginalised local people and their communities towards justice, equality, better health and wellbeing.

The programme comprises a number of different elements. Initial meetings with local people are set up to learn more about their experiences of end of life care and related concerns and aspirations. This is followed by more in-depth discussions regarding particular aspects of end of life care, as a basis for service development. The work is led by health guides – local people who work between the hospice and their communities to share views and knowledge in this area. Recently the hospice has started to develop a cohort of volunteers who will undertake a similar role in the future.

To date, work has been undertaken in Tower Hamlets and Hackney with Somali, Bengali, Turkish/Kurdish, Caribbean and West African communities. Key areas considered include home-based care, social support, care in the last hours of life, and communication of information regarding prognosis.

For more information contact Heather Richardson, Clinical Director at St. Joseph’s Hospice: H.Richardson@stjh.org.uk For more information on Social Action for Health, see: www.safh.org.uk

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Quality markers: Working with local communities 1. Evidence of mutual training and education Measures: - Number of workshops/ training courses held for members of local BME communities - List of forums where workshops were advertised - Numbers of workshop attendees from different BME groups and community organisations; - Number of organised visits to the palliative care service by BME faith and community group representatives

1. Evidence of referral to and from spiritual care providers in the community Measures: - Number of patients referred to spiritual leaders in the community for spiritual support; - Number of patients referred to the palliative care service by members of faith/ community groups, via GP or other healthcare professional

2 Spiritual assessment 2.1 Characteristics of spiritual assessment The NICE Guidance ((1), point 7.15) states that: ‘Teams should ensure accurate and timely evaluation of spiritual issues is facilitated through a form of assessment based on recognition that spiritual needs are likely to change with time and circumstances. Assessment of spiritual needs does not have to be structured but should include core elements such as exploring how people make sense of what happens to them, what sources of strength they can draw upon, and whether these are felt to be helpful to them at this point in their life.’

Building on this, it is recommended that assessment of spiritual needs (including needs relating to religious faith): Occurs at regular intervals throughout the disease trajectory, in recognition of the changing nature of patients’ and family members’ needs, and with the consent of the patient (or, where unable to provide consent, with the consent of the family or primary carer).

Is respectful of patients’ personal boundaries and individual needs for information.

Leads to culturally appropriate responses to spiritual need where support is required.

Consultation of local community and faith representatives and published guidance regarding multi-faith care may assist palliative care providers in developing culturally sensitive models of spiritual care. However, an organisational commitment to cultural Spiritual care for people from BME groups receiving palliative care

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sensitivity will be an ongoing and reflective process involving staff education, assessment of patient and family outcomes, and the willingness to engage with worldviews which may at times conflict (see Recommendation 5).

Is documented in patient records as appropriate. Important issues arising should be conveyed to the rest of the care team during regular meetings, while paying due respect to patient confidentiality.

2.2 Types of assessment Assessments of spiritual need can be categorised into three types: screening (on admission), spiritual assessment (once immediate concerns are met), and assessment using formal tools (which may be integrated into either of the former, if appropriate). These are discussed in turn.

2.2.1

Screening

It is recommended that screening for spiritual needs using a few simple questions is integrated into routine patient assessment conducted on admission to palliative care. At this stage it is important to enquire whether the patient has a particular faith which they practice and whether they would like access to an appropriate faith leader, either shortly after admission or in future, (for example, in the event of a life-threatening crisis). Such screening entails recording any specific religious affiliation together with contact details of the appropriate religious/ faith leader, or permission for referral to the hospital/ hospice chaplain.

It should be recognised that patients with no formal religious beliefs or affiliations may nevertheless have urgent spiritual needs which might be met through access to a spiritual care provider (e.g. a chaplain or counsellor). Where patients indicate that they have no spiritual needs at present, this should be recorded in patient notes for further exploration once immediate needs are met.

Additional information that should be recorded during screening includes specific dietary or other needs associated with culture and/ or faith (for example, the need to access space for private prayer, or for a same-sex health care professional).

2.2.2

Spiritual assessment

It is recommended that once a person has been admitted and the immediate reasons for admission have been attended to, a more thorough assessment of wider spiritual concerns and well being is carried out. This should take place within the context of spiritual history-taking or a formal spiritual assessment (Box 2).

Which member of staff is most appropriate to conduct such assessments depends on the structure and context of the multidisciplinary team (see Recommendation 4); however, it is crucial that staff members conducting spiritual assessments are properly trained to do so.

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Box 2: Conducting a spiritual assessment Encouraging patients to tell their life stories can be a useful way of entering into a spiritual assessment.

An effective starting point for spiritual assessment itself is a private exploration with patients of the issues that are currently important to them in their treatment and care, and their past and current coping resources. Such exploration may be facilitated by the use of questions such as: “When life has been difficult for you, what has enabled you to cope?”

“Do you have a way of making sense of the things that happen to you in life? Do you have particular beliefs that help you to make sense of life?”

“What is really important to you at the moment? Would you like to talk further to someone about these issues?”

These questions are suggested as an informal guide to aid discussion of spiritual resources, beliefs and needs. Each spiritual care provider will find a phraseology which is comfortable for them, and individual discussions should be tailored to the patient.

Other aids in discussing spirituality within a clinical context include: The Mount Vernon Cancer Network spiritual care assessment tool (see Good practice example, page 35) Aide memoires such as: -

FICA (Faith/ Beliefs, Importance, Community, Address in care or action) (84)

-

HOPE (Hope, Organized religion, Personal spirituality, Effects on care and decisions) (85)

-

SPIRIT (Spiritual belief system, Personal spirituality, Integration, Rituals/ restrictions, Implications, and Terminal events) (86)

2.2.3

Formal assessment tools

Outcome measurement tools or questionnaires play an important role in the assessment of spiritual needs or spiritual well being as part of the provision of good quality spiritual care.

Formal assessment tools serve two main purposes: Timely identification of spiritual needs: While never a replacement for sensitive and open discussion of spiritual needs (as might be initiated by the questions in Box 2), the use of assessment tools in the context of a respectful and exploratory conversation about spirituality can facilitate the identification of spiritual distress and/ or topics the patient wishes to discuss. This may be particularly useful for palliative care professionals who are not specialists in spiritual care, in order to identify patients who may require input from a spiritual care expert, (for example, those experiencing spiritual distress or with

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specific religious needs). However, it should be remembered that formal assessment is a means of identifying care needs, and not the end point.

Assessment of the outcomes of spiritual care: Using validated and appropriate measurement tools to assess the outcomes of spiritual care plays a key role in service improvement and generates much-needed data on the effectiveness of spiritual care.

Thorough evaluation of spiritual care may also require qualitative work interviewing patients, families and staff.

2.2.4

Choice of assessment tools

The appropriate choice of assessment tool depends on the intended purpose (for example, screening for spiritual distress, clinical audit or research). Several tools have been validated in palliative care populations (Box 3); choosing between these comes down to the aims of assessment, the properties of the tools and the context in which they are to be used. In deciding on a tool the ease with which they can be incorporated into routine clinical practice should be taken into consideration. Often it may be more feasible to use a multi-dimensional measure containing spiritual elements rather than a longer tool solely focussed on spiritual aspects.

Assessment tools must be “fit for purpose�, which includes being culturally appropriate and acceptable. In order to help ensure this is the case, it is recommended that service providers share assessment tools with local BME faith leaders in order to ascertain cross-cultural acceptability. Where existing tools are found to be inappropriate, collaboration with local faith communities and academic researchers to develop/ adapt and validate more appropriate tools may be useful.

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Box 3: Examples of assessment tools validated in palliative care populations4 Measures that assess spiritual health or well being: JAREL Spiritual Well-being Tool (87) Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE) (88) Functional Assessment of Chronic Illness Therapy –Spiritual Well-Being Scale (FACIT-Sp) (including 12item and expanded versions) (89) Other measures relating to patients’ spirituality/ religion: Ironson-Woods Spirituality/ Religiousness Index (I-W SR Index Short Form) (90) Spiritual Perspective Scale (18;91) Existential Meaning Scale (EMS) (92) Herth Hope Index (HHI) (93;94) Beliefs and Values Scale (95) General measures with spiritual items: Palliative Care Outcome Scale (POS) (96;97) Needs at the End-of-Life Screening Tool (NEST) (98;99) Hospice Quality of Life Index (HQLI) – revised (100;101) Missoula Vitas Quality of Life Index (MVQOLI) (102) McGill Quality of Life questionnaire (MQOL) (31;103) World Health Organization Quality of Life in HIV instrument (WHOQOL-HIV) (104-107) Many of these tools were developed and validated in North America; the POS, MQOL, MVQOLI and WHOQOL-HIV have been validated more widely, although of these only the POS has been validated in the UK. The Royal Free Interview for Spiritual and Religious Beliefs (16) was developed in the UK; however, it has not been validated specifically in palliative care populations.

All tools listed have been validated in patients receiving palliative care and/ or living with advanced cancer or HIV infection.

4

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Good practice example: Spiritual assessment The Mount Vernon Cancer Network (MVCN) was tasked to ensure that local cancer and palliative care services met the key recommendations on spiritual care from the 2004 NICE Guidance (1) by the end of December 2007. As part of this project the MVCN Group developed a specific tool to facilitate ongoing conversations about spirituality.

The assessment tool developed comprises three questions assessing the need for spiritual care, adapted from work by Peter Speck (108). The questions were piloted by hospital and hospice units within the MVCN and, after receiving feedback from practitioners and service users, were amended to make them more accessible and self-explanatory. The questions were drafted in such a way as to facilitate the assessment of spiritual and religious care within the context of the total care of the person, rather than limiting the conversation to an exploration of religious faith. They are intended as a guideline or trigger to open a conversation about spirituality and can be supplemented with others based on the referral criteria for Spiritual Care. The three questions are: How do you make sense of what is happening to you?

What sources of strength do you look to when life is difficult?

Would you find it helpful to talk to someone who could help you explore the issues of spirituality/faith?

The questions have been incorporated into the PEPSI-COLA Holistic Common Assessment of Supportive and Palliative Care Needs for Adults with Cancer, which all members of the site specific multidisciplinary team and district nurses carry with them.

The PEPSI-COLA aide memoir also contains details of where to refer patients, if appropriate, based on a newly agreed referral pathway. The aim of the pathway is to guide health and social care staff and designated volunteers in ensuring cancer and palliative care patients and their families have access to the most appropriate spirituality services. It outlines four different levels of competency, based on the Marie Curie competencies, from those at level 1 who only have casual contact with patients and families to those at level 4 whose primary responsibility relates to spiritual care.

Reproduced with kind permission from the Mount Vernon Cancer Network http://www.mvcnprof.nhs.uk/

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Quality markers: Spiritual assessment 1. Evidence of spiritual assessment Measures: - Documentation showing every patients’ spiritual (including faith) needs are discussed at multidisciplinary meetings - Documentation of spiritual needs in patients’ notes 2. Evidence of the use of formal assessment tools in the audit of spiritual care Measures: - Documented ways in which data from formal assessment of outcomes of spiritual care have been used to influence service provision

3 Spiritual resources and care In order to respond effectively to the many different spiritual and religious needs patients may have, it is recommended that: Patients have access to a range of appropriate spiritual care services, including those which are not religious (Box 4).

Information about the availability of spiritual care services is available to all patients throughout the disease trajectory in a variety of formats (e.g. posters, leaflets, large print and Braille). Services should provide information in a range of languages spoken in the local community, and also make provisions for patients who are not able to read.

Team members’ conversations about spiritual issues are documented in patient notes as appropriate, with due respect to patient confidentiality.

The spiritual care services and resources accessed by patients both in the community and through the palliative care service are documented in their notes, along with their value and effectiveness for the patient. This may include interventions such as counseling or complementary therapies provided by staff members.

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Box 4: Spiritual resources and care It is recommended that patients and families have access to: Appropriate faith leaders for religious support and interventional prayer and ritual (i.e. for or with the patient) A ‘quiet space’ for personal reflection and prayer, in line with the NICE Guidance (1) point 7.22 (‘Providers within in-patient or day care facilities should ensure the availability of a dedicated and accessible ‘quiet space’ or room, suitably furnished in a way to allow for use by various faith groups or by those of no faith.’)

Support groups, e.g. day care, community and faith groups. Support groups designed for patients from specific BME groups may be considered by the palliative care team where there is a large local population of that group. These could be held in the local community with a palliative care professional or trained volunteer in attendance, or in the palliative care unit, with a member of the relevant community (e.g. a spiritual leader) in attendance where appropriate One-on-one counselling (with either a spiritual or psychological approach as appropriate) through the palliative care service, with trained and supported interpreters available as necessary Non-verbal therapies (e.g. movement therapies, meditation, massage, art and music therapy)

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Good practice examples: Spiritual resources and care Chaplaincy & Spiritual Health Care Services at Guy’s & St. Thomas’ NHS Foundation Trust (GSTT), London GSTT in London serves a diverse community of people from the local area as well as nationally. Almost 25% of people who attend this large teaching hospital are of BME origin or of mixed ethnicity (Trust data, 1 April-31 December 2006), and service users have a wide range of cultural and spiritual needs.

Patients, families, friends and hospital staff have access to a chaplaincy team of 50-60 people (including 15 lay volunteers) whose role is to support their spiritual well-being. Forms designed for patients and their loved ones to contact chaplains are available. The team represents the world’s major religions, and includes chaplains from BME ethnic groups and African Pentecostal churches. A range of religious and spiritual services are offered, including a regular Hindu shrine, Christian worship and prayer services (including Holy Communion and Roman Catholic Mass), Juma prayers, and meditation sessions conducted by a Buddhist chaplain. All users of the hospital are invited to attend celebrations of religious festivals such as Eid, Divali, Buddha’s birthday, Chanuka, Easter and Christmas.

Quiet spaces or prayer rooms and a Chapel are available for use by patients and families of any or no faith.

Resources such as prayer cards, Muslim prayer mats, and religious artefacts are also available.

For more information, contact Revd Mia AK Hilborn, Hospitaller, Head of Spiritual Health Care and Chaplaincy Team Leader, Guy's and St Thomas' NHS Foundation Trust: Mia.Hilborn@gstt.nhs.uk

St Ann’s Hospice, Manchester On admission to St. Ann's Hospice services, Manchester, all patients receive an assessment of their spiritual and religious needs as part of the holistic assessment process. Permission to refer on to chaplaincy services, if appropriate, is sought and documented.

The hospice has a resident chaplain and a team of volunteer lay and ordained chaplains whose aim is to provide spiritual, religious and personal support to patients, families, friends, staff and volunteers. At both main hospice sites there is a weekly Communion Service, led by the Church of England, Methodist and URC chaplains in turn, and a weekly Service of Word and Communion for Roman Catholics. The chaplaincy team is able to contact representatives of local faith communities to provide additional spiritual and religious care as required.

At one of the sites (Heald Green) patients, carers and staff have access to a multi-faith/ quiet room with a mural by a local artist on one wall. The design incorporates words that patients and carers used to describe their experience of St. Ann's, in a style which is acceptable to all faiths. Sacred texts from the major world faiths are available, along with prayer mats and ablution facilities.

When you are ill: prayers and readings for patients is a publication compiled by the chaplaincy team. It includes prayers from the Christian, Sikh, Jewish, Islamic, Hindu and Buddhist traditions, and is available on request, in the Chapel and quiet areas, and on the website (http://www.sah.org.uk/for-patients-andcarers/spiritual-and-religious-support).

As well as the chaplaincy services, patients and families have access to a range of therapies through the day therapy and outreach services, including creative therapy activities, complementary therapies, (e.g.

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reflexology and aromatherapy), professional counselling and relaxation. One of the aims of the outreach service is to access patients and families from BME groups who may be less likely to access the institutional services.

Populations of some central Manchester districts are over 50% BME, with an average of approximately 25% in Manchester and 12% across Greater Manchester (Office for National Statistics 2001). Referral to the hospice from BME groups currently stands at 6-7%, and widening access is one of the key developmental aims of the hospice.

Patients’ and families’ views of the services provided by the hospice are invited, with comment cards available in reception and ward areas for anonymous feedback.

Quality markers: Spiritual resources and care 1. Evidence that a range of appropriate spiritual care services are accessible to all patients Measures: - Documentation in patient records of the spiritual care services patients utilise in/ outside the healthcare setting, and their value and effectiveness for that patient - Diverse range of media produced and disseminated to advertise the spiritual care services available to patients, e.g. posters, leaflets in appropriate languages, Braille and large type 2. Evidence of patient and family satisfaction with spiritual care services Measures: - Assess patient and/ or family satisfaction with the spiritual care they have accessed through the palliative care service, generated through e.g. the inclusion of spiritual care in the standard form used to assess satisfaction with care, and capturing informal feedback, including thank you cards and other communications from patients and families to spiritual care 3. Evidence that patients’ wishes for spiritual care are assessed and responded to continuously Measures: - Documentation in patient records of patients’ spiritual care needs and resulting action taken at regular intervals throughout the disease trajectory

4 Spiritual care providers 4.1 Role of the spiritual care provider in palliative care While it is recommended that all members of the palliative care team are confident and skilled in discussing spiritual aspects of illness, designated spiritual care providers play a specific and important part in patient care. It is recommended that spiritual care providers employed by the palliative care team (either as staff or volunteers) are experts in providing an open, inclusive and safe space for spiritual insights to be shared. Their role is to: Spiritual care for people from BME groups receiving palliative care

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Visit, listen to and speak with patients and family members in a sensitive, confidential, open-minded and respectful way which fosters trust Act as a point of referral for the rest of the care team Recognise their limitations and ask for advice/ refer on when necessary. A referral pathway such as that developed by the Mount Vernon Cancer Network may assist with this process (see Good practice example, page 35) Liaise with and refer to spiritual care providers in the community (e.g. local faith leaders) Support and train other members of staff (e.g. through teaching, advising and providing spiritual support) Play a role in public education Liaison with the community is of particular importance in spiritual care for BME groups. The palliative-care designated spiritual care provider, whether a paid or voluntary member of staff, should recognise the importance of spiritual care providers outside the healthcare context (e.g. church ministers and pastors) and communicate with them. This should occur with the patient’s permission, and aim to ensure the role of the palliative care-designated spiritual care provider is understood. Clarity regarding the designated spiritual care provider’s role and its limitations is important in order to reduce any risk of perceived competitiveness.

4.2 Choice of spiritual care providers by the care team 4.2.1

Members of the palliative care team

The relationship between spiritual care provider and patient is central to the effectiveness of spiritual care, and choice of an appropriate spiritual care provider depends on the individual patient and his or her needs. At times, members of the palliative care team who are not formally specialists in spiritual care, but who have received training in its provision (e.g. a nurse or social worker), may be the most appropriate candidate in the first instance, owing to their personal relationship. In this situation, it is recommended that designated spiritual care experts in the team support and advise their colleague as required.

4.2.2

Spiritual care providers outside the healthcare setting

When choosing an appropriate spiritual care provider, languages spoken, ethnicity, gender and religion need to be taken into account, according to patients’ wishes; this may require referral to spiritual care providers outside of the healthcare setting. It is recommended that all spiritual care providers referred to by the palliative care team have received palliative care training, and are supported by the palliative care team. This is of central importance given the fact that Spiritual care for people from BME groups receiving palliative care

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training to be a religious leader (such as a pastor or imam) or a community worker (such as the co-ordinator of a women’s group) does not necessarily prepare you to provide spiritual care to seriously ill people.

In order to safeguard patients and families it is also recommended that palliative care services link with community spiritual care providers who belong to formal or official groups, e.g. registered NGOs and established churches. Before linking with a religious institution such as a church, palliative care services may wish to request a statement of faith in order to anticipate or prevent potential conflicts (for example, patients should be protected from proselytising).

4.3 Support for spiritual care providers Providing spiritual care for people with incurable, progressive disease is a significant responsibility requiring the ability to face one’s own mortality and the deep existential questions this raises. It is therefore recommended that all spiritual care providers (whether paid or voluntary) receive support from the palliative care organisations for which they work, in the form of debriefing and access to their line managers, peer support and/ or counseling as necessary.

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Good practice example: Spiritual care providers The African HIV Policy Network (AHPN) and partners Through the National African HIV Prevention Programme (NAHIP), funded by the Department of Health, the AHPN has developed specific resources for Muslim and Christian faith leaders and African community-based organisations.

During the 2009 Changing Perspectives campaign, the AHPN in partnership with faith groups and organisations including the London Ecumenical AIDS Trust (LEAT) launched two toolkits for Muslim and Christian faith leaders.

The Muslim Leaders’ Toolkit, Life & Knowledge: Protecting our communities through awareness of HIV and AIDS, aims to enable faith leaders to initiate and develop HIV prevention interventions and other HIV services in faith-based settings.

LEAT in collaboration with the Ethnic Health Foundation (EHF), the AHPN, World Christian Conquerors and Kubatana Women’s Association ran a series of workshops in 2009 aimed at senior members of South East London churches on how to use the Christian Leaders’ Toolkit, Breaking the Loud Silence on HIV. The toolkit is being disseminated nationally, and training has so far been delivered in more than 14 locations across the UK, including Luton, Oxford, Milton Keynes, Crewe, Liverpool, Leeds, London, Norwich, Northampton and Edinburgh.

In addition, EHF and LEAT have developed a resource booklet discussing HIV from a Christian perspective, called ‘SPEAK OUT, ACT NOW’. The booklet was developed in response to the need, identified by the NGOs through years of work in this area, for an appropriate resource specifically for Christian communities. The booklet can be downloaded from the EHF website.

These materials are used to increase levels of awareness of HIV and change perceptions of HIV and African people in the UK. The AHPN advocates for the participation of faith leaders in informing key policies regarding HIV and African communities and encourages an active approach to challenging stigma and raising awareness.

To this end, in 2009 the AHPN also began piloting clergy education for the Anglican Church in Southwark Dioceses in London, with the aim of introducing HIV awareness as part of continual ministerial education.

Through a focus on theology, the training explores the impact of HIV, addresses public awareness and epidemiological facts, and encourages partnership with other organisations.

The AHPN is currently working on a directory of faith-based groups undertaking work with HIV, which will be launched in 2010 to signpost services and community-based organisations across the UK. For more information, see: www.ahpn.org.uk www.nahip.org.uk www.leat.org.uk www.ehfl.org

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Quality markers: Spiritual care providers 1. Evidence of liaising and sharing care with local spiritual leaders Measures: - Directory of local palliative care-trained faith leaders and representatives of faith and community groups held in the chaplain’s office and in-patient areas 2. Evidence of training staff in spiritual care provision Measures: - Dedicated session on spiritual care provision in the induction program for all new staff; annual appraisal on spiritual care - Number of in-service training workshops on spiritual care provision and numbers and types of staff who attended - Attendance of spiritual care providers at national and/ or international palliative care conferences 3. Evidence of collaboration with training spiritual care providers in the community Measures: - Number of clinical placements at the palliative care service taken up by (religious and nonreligious) spiritual care providers from the community - Details of teaching by palliative care staff on theological/ pastoral care/ chaplaincy training courses and other community forums (e.g. HIV NGOs)

5 Cultural sensitivity 5.1 Culturally competent care It is recommended that palliative care organisations aim to provide culturally competent care, which requires a commitment to cultural sensitivity from all members of staff. Cultural sensitivity entails recognising the complexity and range of culturally specific beliefs and practices, which are often related to religious or tribal affiliation. For example, syncretistic beliefs (e.g. faith in a Christian God combined with reverence of the ancestors) are common throughout sub-Saharan Africa, and may affect patients’ and families’ beliefs about illness and spiritual care needs.

While palliative care staff need to familiarise themselves with the different cultures and ethnicities in the local area, this is not a ‘box-ticking’ exercise that can be reduced to learning fact-sheets about different cultures and/ or religions.5 Each patient needs to be assessed and cared for as an individual, and patients’ and families’ beliefs should be explored on a case-bycase basis. Such beliefs are often intimately linked to patients’ illness experience and healthrelated behaviour. Any potentially harmful beliefs related to cultural or spiritual worldview See ‘Culture is not enough: A critique of multi-culturalism in palliative care’, Y Gunaratnam (109) for more on this topic.

5

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need to be discussed and understood, and the palliative care perspective presented sensitively but explicitly, with due regard to the healthcare professional’s duty of care.

For cultural or personal reasons, some patients may see staff members to have special authority e.g. doctors may be given a significant degree of trust, and may be expected to play a role as counsellors and advisors. This should be explored and handled sensitively in consultation with the staff member(s) in question. Similarly, some patients may see chaplains from the BME community and/ or local religious leaders to have special authority, knowledge and ability. This should be explored and handled sensitively, in consultation with the individual chaplain/ faith leader if possible.

A commitment to cultural sensitivity requires constant awareness of organisational processes, one’s own worldview and relationship to others. A commitment to being empathetic, openminded and reflective should be encouraged among staff. Confidentiality is central, and should be upheld by all members of staff and the community involved in patient care, including local spiritual leaders.

5.2 Language and interpreters Care must be taken when discussing sensitive issues, as semantic variation exists at both cultural and linguistic levels. A shared language does not necessarily entail shared meaning and interpretation; social class, age and ethnic group may all impact on how language is interpreted and responded to. This is particularly important to bear in mind when communicating with someone for whom English is a second language. At the linguistic level, direct translation of terms from one language into another is not always possible, owing to variation in the structure, content and limitations of languages (including English). Interpretation and translation therefore needs to be sensitive to linguistic and cultural differences, recognising that language is embedded within a belief system and worldview.

It is recommended that palliative care services have access to trained and supported interpreters working in languages common in the local community. Where interpreters are utilised, patient and family should ideally be involved in selecting an appropriate interpreter, as gender, age and group affiliation may be relevant.

5.3 Patient and family expectations The expectations of patients and families are culturally mediated and may lead to particular challenges in care provision, e.g. patients may expect their spiritual leader or care providers to tell their family members things they can’t say themselves, while family members may accuse the discloser of not telling the truth. Similarly, family members may expect care providers not to tell the patient a poor prognosis. Such situations need handling with diplomacy and sensitivity.

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Good practice example: Cultural sensitivity Cancer Help for Minority Ethnic Communities (CHEC) In 2007 the BME population of Bristol was approximately 11.9%, slightly higher than the England average of 11.8% (Office of National Statistics). Bristol has a large Asian population, originally from Bangladesh, India, Pakistan, China and more recently Sri Lanka, and increasing numbers of Black African and Caribbean residents. Given the diversity of the population, the needs of health service users vary, especially in relation to language, culture, social taboos, and religious and family traditions.

In response to the requirements of the Race Relations Act (Amendment) 2000 and the need to improve cancer services for BME people (110), the Cancer Help for Minority Ethnic Communities (CHEC) service was established in 2002. CHEC is an NHS service that assists in the provision of culturally appropriate care and support for BME people with cancer. The service aims to ensure that a person is not disadvantaged as a result of individual needs relating to their culture, ethnicity or religious beliefs.

CHEC offers information and support for BME patients and their families including assistance with arranging interpreters for medical appointments, emotional support, and signposting to other relevant agencies or organisations. CHEC highlights services that might be of benefit to patients and families but are currently underused by BME people, such as hospice care, NHS support services, complementary therapy services and grants for people living with cancer.

In addition to helping patients and families to access information days and support groups run by other organisations, CHEC offers group sessions to local BME people where they can learn more about cancer, associated risk factors and how to access support. Such development activities aim to encourage prompt presentation with symptoms and hence earlier diagnosis, and to increase access to support services, potentially resulting in improved health outcomes.

The CHEC service is often used as a resource for other healthcare staff, providing information, guidance and signposting in relation to the provision of culturally appropriate care. CHEC occasionally delivers teaching sessions to other healthcare professionals to help raise awareness of the needs and experiences of BME patients, how they can best address these, and how to access local BME support agencies.

The CHEC service has been independently evaluated by the University of the West of England, and found to be a cost-effective and valuable service for patients, their families, healthcare professionals and local community organisations (111).

For more information, see: http://www.avon.nhs.uk/palliative/

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Quality markers: Cultural sensitivity 1. Evidence of organisational commitment to providing culturally competent care Measures: - Assessment of staff members’ cultural awareness and sensitivity during induction and appraisals - In-service training to foster core skills among staff - Documented collaboration with local BME groups, e.g. conference, invitations to community members to visit the palliative care service (see Working with local faith and community groups, page 27) - List of trained and supported interpreters available to staff members

6 Organisational requirements 6.1 Implementing the recommendations An ongoing commitment to education, training and support in the field of spiritual care is a cross-cutting theme of central importance in actualising the recommendations outlined here.

The NICE Guidance (1, point 7.24) states that all staff working within supportive and palliative care services should have access to ‘basic training in understanding the spiritual needs of patients and ways of assessing spiritual need’, and to ‘training in the specific religious needs and rites of patients from different faith groups, including a sensitivity to the inter-relationship between culture, ethnicity and belief.’ Additional training will be required according to staff members’ roles and levels of contact with patients.

Recommendations 1-5 also have specific implications for the organisation and delivery of palliative care. For example: Recommendation 1 requires that the importance of relationships with local spiritual leaders and faith groups is recognised and fostered, with the palliative care organisation building on the support structures already in place in the local community Recommendations 2 and 3 require documentation of spiritual well being and spiritual interventions in patient records for all staff members to access Recommendation 4 requires that diverse spiritual care providers be identified, trained, supported and valued for the role they play in patient and family care Recommendation 5 requires an active engagement with the goal of cultural competence, including training staff in best practice and supporting them in their individual negotiations of multi-cultural care In addition, it is recommended that palliative care services fulfil requirements 6.2 to 6.5.

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6.2 Understanding of spiritual well being and care Spiritual well being should be understood in broader terms than religious belief and practice, to include notions of personal philosophy, coping and transcendence. However, the importance of religion to many patients should be recognised, and their religious needs met. Spiritual well being should be considered intrinsic to quality of life.

Spiritual care should be considered equally important as other dimensions of palliative care.

National palliative care curricula for palliative care professionals should reflect the specialism’s commitment to meeting the spiritual needs of patients.

All staff should be aware of the spiritual dimension of the illness experience, feel confident talking to patients’ about their spiritual needs, and be able to refer to spiritual care providers appropriately (Box 6).

6.3 Providing patient-centred care In line with a commitment to provide patient-centred care, referral to spiritual care should occur with a patient’s permission and according to a system embedded in routine care. Inpatient and daycare units should be able to accommodate the religious needs of patients from BME groups, including needs for religious rituals and visits by faith leaders and members of the faith community, as well as the need for a space for worship.

6.4 Staff support The spiritual well being of staff should be taken into consideration, and a culture of support should be fostered. This could include staff training in techniques such as mindfulness (112;113).

6.5 Quality improvement Services should demonstrate a commitment to ongoing quality improvement in spiritual care, for example through clinical audit, assessment of the outcomes of spiritual care, and the development and adoption of quality markers and associated measures for spiritual care.

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Box 6: The Fellow Traveller Model for Spiritual Care The Fellow Traveller Model was developed by Margaret Holloway as a way of conceptualising spiritual care (114;115). Although the model is based on the role of social workers in the provision of spiritual care, the model is also applicable more widely to other members of a palliative care team. Four intervention levels are described as follows (adapted from (115)): 1.

Joining (requiring spiritual awareness): Every team member should be able to engage in spiritual care at this level. What this means is that they are sufficiently spiritually aware to recognise the spirituality of the service user and to identify those people for whom spiritual concerns are important.

2.

Listening (requiring spiritual sensitivity): The ability to listen with an attuned ear is an essential component of the core set of palliative care team members’ skills. All team members should be able to ‘hear’ what the service user is saying and pick up the clues as to what they mean as well as what they are not saying (level 1). In level 2, a preliminary assessment of the nature and significance of the spiritual issues is made through ‘active listening’. At this point the staff member may set up ‘joint care’ with one or more other members of the interdisciplinary team; refer to a spiritual care professional; seek the advice of a spiritual care professional; or, if both staff member and service user feel comfortable, the spiritual engagement moves to a deeper level.

3.

Understanding (requiring spiritual empathy): At this level, the staff member providing spiritual care needs to be able to understand and convey empathy with the kind of spiritual issues and dilemmas that may concern the service user, as well as the high points of spiritual experience, and understand how spiritual resources might be utilised. In order to provide this kind of spiritual care, a staff member probably needs to have (or have had in the past) an active spiritual life. This is not necessarily through committed adherence to a particular religious faith, but the staff member does need to have a strong awareness of their own spiritual identity and journey.

4. Interpreting (requiring spiritual exploration): Sometimes there is a need to go still further into the spiritual issues. In the journeying metaphor, the traveller may enter a dark valley or rocky or hazardous terrain in which s/he is reliant on the knowledge, experience and expertise of the guide. The spiritual care provider will be willing to make her/ himself vulnerable through choosing to travel with the other person. Crucial tools here are the use of meaning-making and the ability to engage with hope. This kind of depth work needs to be conducted with great care; often (but not always) a professional spiritual care provider will be the most appropriate person to engage with service users at this level.

Reproduced in adapted form with kind permission of M. Holloway.

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Good practice examples: Organisational requirements Marie Curie Cancer Care Spiritual and Religious Care Competencies It is the responsibility of all members of the palliative care team to attend to spiritual needs and take spiritual needs seriously, irrespective of their own belief system. This is recognised by the NICE Guidance, which states ‘spiritual care should be seen as a responsibility of the whole team, while recognising that an individual may hold specific responsibility for ensuring its provision.’ ((1), point 7.21) The Marie Curie Cancer Care ‘Spiritual and Religious Care Competencies for Specialist Palliative Care’ were developed in order to set standards for spiritual care according to the level and nature of staff members’ contact with patients (116;117). The competencies provide four levels of provision of spiritual care, and outline the abilities and responsibilities expected at each level. In particular, levels 3 and 4 have very clearly defined responsibilities for this kind of care. Marie Curie Cancer Care has also developed an assessment tool for use alongside the Spiritual and Religious Care Competencies.

Birmingham St. Mary’s Hospice Birmingham is the most diverse city in the UK after London, with a BME population of approximately a third (29.6%, Office of National Statistics 2001). In 2001 32.4% of the BME population were of Pakistani origin, followed by 17.4% Indian and 14.9% Black Caribbean. There were 140,033 Muslim people living in Birmingham (14.3% of the population), a greater number than any other Local Authority area.

Birmingham St. Mary’s Hospice (BSMH) is engaged in an active programme of work that aims to ensure that it meets the needs of local BME communities. Staff at BSMH consciously reflect on the service they offer by periodically examining their policies and procedures and putting systems in place to facilitate equity and equality of access to patients from all local communities. To this end, a perception survey was carried out in 2006 to explore public knowledge and opinion about the hospice’s services. One of the key recommendations from the survey was to establish links with people from BME communities, and in 2007 the hospice started an outreach programme (funded by Macmillan Cancer Support) to bring care to those who were not previously accessing its services.

In 2007-2008 BSMH went on to conduct a study to identify access barriers for BME groups and explore how these could be addressed. On the basis of research findings, the hospice has implemented a number of strategies to improve cultural sensitivity, and in 2008 diversity was adopted as a priority area in the hospice’s 3-year strategic plan.

On 6 May 2009 BSMH hosted the Reaching People conference, a forum for people from BME communities and palliative care professionals to discuss issues pertaining to death, dying and loss. The conference highlighted that some of the language used in palliative care (for example, ‘end of life’) prevented people from BME communities from accessing the hospice. Participants from BME communities identified specific priority areas for people from their communities living with incurable progressive disease; for example, the importance of families and communities, religion and religious rituals, and culturally or spiritually defined diets. Professionals were urged to respect the uniqueness of patients and their families by asking service users what they needed, recognising the insights that service users have about their illnesses, and engaging in meaningful conversations with patients and their families. Raising awareness amongst professionals of cultural and spiritual issues in palliative care was also recommended, and the hospice is now running a programme of training in these areas.

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BSMH continues to carry out outreach work to raise awareness of palliative care services among communities in Birmingham. With new funding from the West Midlands Strategic Health Authority the hospice is currently working to establish what support families, community members and local level organisations are giving to people with life-limiting illnesses in the area. In future the hospice hopes to collaborate with other community organisations and members to provide quality care for patients wishing to remain in their own homes at the end of life.

For more information contact Diana Murungu, Macmillan Diversity Social Worker at BMSH, diana.murungu@bsmh.org.uk.

Quality markers: Organisational requirements 1. Evidence of commitment to spiritual care provision Measures: - Allocation of appropriate resources to the provision of spiritual care, including the time and funds for staff to provide spiritual care and receive spiritual care training 2. Evidence of implementing recommendations Measures: - Agenda for moving forward with these recommendations, including: o Prioritisation of specific recommendations and commitment to appropriate quality markers for the service o Development of a timeframe for implementation of the recommendations o Incorporation of recommendations and quality markers into organisational policy, strategy, budget, training plan and appraisal system 3. Evidence of commitment to widening access to palliative care for BME groups Measures: - Percentage of patients and families accessing the palliative care service from specific BME groups in comparison with the percentage of people from those groups in the catchment area - Evaluation of patient and family satisfaction with palliative care service according to ethnic group

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7 Adoption of the recommendations

Adopting the recommendations presented here and implementing strategies to meet the suggested quality markers may potentially benefit patients, communities and palliative care services in a number of ways; for example, by leading to: Increased awareness of, and referral to, palliative care within the BME community, through local faith groups and spiritual leaders; Improved communication, and a mutually supportive relationship, between local spiritual leaders and faith groups and hospice and palliative care teams; Local spiritual leaders who are better informed about palliative care needs, the philosophy of palliative care and wider spiritual aspects of the illness experience, and who are supported in their work through palliative care teams; Palliative care teams who are better informed about the needs of people from BME groups, and are able to refer to trained spiritual care experts in the local community when necessary.

Better assessment of spiritual well being in clinical practice. While some palliative care practitioners express fears that formal assessment tools may turn spiritual care provision into a ‘box-ticking’ exercise (118), there is a strong argument that good assessment of spiritual well being is needed in order to screen for spiritual distress, and identify patients who may require support in this area (45;78;119-122).

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8 Future research

Failure to identify patients’ sources of spiritual support, insensitive approaches to spiritual assessment, and ignoring expressed spiritual need may contribute to considerable distress.

While these recommendations aim to assist services with meeting the spiritual needs of diverse communities, evidence relating to the provision of spiritual care and culturally competent palliative care is urgently needed. On the basis of the work conducted during this project, the following areas are identified as research priorities in this field: 1. Application, adoption and evaluation of the recommendations and quality markers presented here. Evaluation criteria recently formulated for quality indicators include importance (the extent to which indicators capture key aspects of care that require improvement); scientific acceptability (the degree to which indicators produce consistent and credible results when implemented, including validity, evidence of improved outcomes, reliability, responsiveness, and variability); usability; and feasibility (83).

2. Evaluation of the effectiveness of spiritual care models and interventions, and techniques and methodologies used to improve uptake of palliative care services by people from BME and other disadvantaged groups, using both qualitative and quantitative methods and measuring key outcomes (e.g. spiritual well being).

3. Evaluation of alternative methods of identifying and assessing spiritual care needs.

Promising methods are likely to combine the use of good formal assessment tools with the staff training and support needed in order to foster the skills and confidence to engage with the spiritual and religious resources available to patients and families.

4. Identification and psychometric evaluation of existing measures of spiritual well being (and related constructs) that may be appropriate for use in multi-cultural palliative care populations. Several existing tools have been criticised in the literature for conceptual imprecision (123;124), cultural and religious bias (44;123-125), and psychometric problems such as floor and ceiling effects (123).

5. Adaptation and validation of identified measures in ethnically diverse palliative care populations in the UK.6 As spiritual well being is embedded within culture, measures used in clinical practice and research need to be developed and validated in the specific populations in which they are to be utilised.

Given the proliferation of spiritual outcome measures, it is likely that appropriate measures for adaptation exist in the literature.

6

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9 Concluding comments

These recommendations combine three themes identified in the evidence review for the NICE Guidance as in need of further research: spiritual support, making services more sensitive to cultural differences, and improving care for underserved groups (126). In doing so, they aim to foster palliative care services which are able to meet the spiritual care needs of a population which is increasingly diverse in terms of culture, spiritual beliefs and practices, and worldview.

As discussed in Section One, it is expected that service providers will prioritise recommendation categories according to their own aims. The quality markers suggested here aim to guide services in monitoring their progress towards meeting those recommendations to which they are committed. However, services need to adapt and develop individualised and detailed quality markers based on local context; for example, formulating specific numerators and denominators would make some of the markers more explicit and facilitate the measurement of progress (81). Future revisions of these recommendations will take into account local experiences and innovations in practice.

It is hoped that these recommendations serve as a first step in the development of rigorous, evidence-based quality markers for the spiritual and cultural aspects of palliative care. In future, cross-site comparison of data generated through the measures associated with specific quality markers would contribute to setting national (and international) standards for the provision of the spiritual dimension of palliative care.

The authors also hope these recommendations will contribute to a much-needed debate on the best construction of a multi-faith response to incurable, progressive illness that meets the needs of patients and families.

May 2010

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Glossary The following terms used throughout this document are defined as follows:

Term

Definition

Spirituality

A universal search for existential meaning which may or may not include belief in a higher power (includes existentialist/ humanist positions).‘Spirituality’ is used here to include personal religious beliefs (46;48;50;68;127); however, spiritual needs may or may not be expressed within a religious framework.

Religion

A pre-existing set of narratives, beliefs and practices, shared by a social group, which provides a ‘platform’ for the expression of spirituality (46;48;50;68;127).

Existential

In this context, relating to questions such as ‘Who am I?’, ‘Does my life have any purpose?’, and ‘Has this illness the power to destroy me?’ Existential questions or concerns may or may not be expressed in religious terms (48).

Culture

The various ways of living and thinking that are built up and shared by a particular group of people (61;128), comprised of shared rules, values, beliefs and meanings that guide decision making and action (129).

Black and minority ethnic (BME)

For the purpose of this project, BME refers to people from communities in the UK who may be disadvantaged because of skin colour, race, language, culture or religion. The term commonly used in the UK by the Black and ethnic minority community and the Home Office.

Sub-Saharan Africa

The area of the African continent which lies south of the Sahara or those African countries which are fully or partially located south of the Sahara.

Cultural competence

The ability, of an individual or organisation, to interact effectively with people of different cultures. A culturally competent organisation can be understood as one that acknowledges and incorporates - at all levels - the importance of culture, assessment of cross-cultural relations, vigilance toward the dynamics that result from cultural differences, expansion of cultural knowledge, and adaptation of services to meet culturally unique needs (130).

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Cultural sensitivity

An individual’s awareness of the potential and actual cultural factors that affect their interactions with others, e.g. in healthcare, a professional’s effort to be aware of such factors in their interactions with patients and families, and willingness to work in a culturally competent way. Cultural sensitivity is considered to be a necessary component of cultural competence (130).

Palliative care

An approach that improves the quality of life of patients and their families facing the problem associated with lifethreatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual (53).

Specialist palliative care

The palliative care provided by members of specialist multidisciplinary palliative care teams based in hospitals, hospices and/ or the community (e.g. consultants in palliative medicine and clinical nurse specialists in palliative care) (1;131).

Generalist palliative care

The palliative care provided by those providing day-to-day care to patients and carers in their homes and in hospitals (e.g.

GPs and district nurses) (1;131).

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Appendix 1: Summary of the recommendations Categories

Sub-categories

Recommendations

Ongoing education, training and support (cross-cutting theme)

Operate a ‘shared care’ model of spiritual care, collaborating with diverse local agencies as appropriate

1

Working with local faith and community groups

1.1. Mutual education and training

Offer mutual education, training and support by palliative care and local community and faith groups on an ongoing basis, e.g. training in palliative care through workshops for local faith leaders/ groups Encourage BME spiritual leaders/ faith groups to educate members of local palliative care teams re. spiritual needs of local BME populations and resources/ support available Facilitate the above by inviting spiritual leaders to visit the unit and attend training events Ensure systems are in place and utilised for palliative care teams to refer to local BME spiritual leaders who have been trained in palliative care

1.2. Referral

2

Spiritual assessment

Raise awareness of palliative care amongst local BME spiritual leaders and in particular of how to refer to palliative care (e.g. via GP) Assess spiritual well being/ spiritual needs regularly, with consent and in a way which respects patients’ personal boundaries and needs for information

2.1. Characteristics of spiritual assessment

Ensure assessment results in culturally appropriate responses to spiritual need Document all assessments and interventions in patient records and convey important issues to the care team during meetings

56

Ensure brief and simple screening for spiritual needs is integrated into routine patient assessment on admission; ensure religious affiliation and appropriate faith leader (if applicable) are recorded in patient records, along with other cultural/ faith needs Recognise that patients with no formal religion may nevertheless have spiritual needs Conduct a wider exploration of spiritual history or a formal spiritual assessment once immediate reasons for admission are met 2.2. Types of assessment

Ensure all staff members conducting spiritual assessment are trained to do so Integrate the use of formal assessment tools into screening or spiritual assessment to facilitate the identification of spiritual needs Evaluate the quality of care and engage in ongoing service improvement through using outcome measurement tools and interviews with patients to explore the outcomes of spiritual care Ensure assessment tools and outcome measures are ‘fit for purpose’, i.e. validated, culturally appropriate and acceptable Offer a range of spiritual resources, including: access to a range of appropriate faith leaders, a ‘quiet space’, support groups, one-on-one counselling and non-verbal therapies; document their value and effectiveness in patient records Consider support groups designed for patients from a BME group where there is a large local population

3

Spiritual resources and care

Advertise the availability of spiritual care services in a range of formats throughout the disease trajectory (e.g. through leaflets in multiple languages, large print and Braille) Document team members’ conversations about spiritual issues with patients in patient records as appropriate, while respecting patient confidentiality Document in patient records the spiritual care services and resources accessed by patients (both in the community and through the palliative care service) and their value and effectiveness for the patient

57

4.1. Role of spiritual care provider in palliative care team

4

Spiritual care providers

4.2. Choice of spiritual care providers by the care team

4.3. Support for spiritual care providers

Recognise diverse roles of the spiritual care provider (SCP): visiting, listening to and speaking with patients; acting as point of referral; liaising and sharing care with community SCPs (with the patient’s permission, and aiming to ensure the role of the palliative care-designated spiritual care provider is understood); educating and supporting other members of staff; public education Recognise that the choice of SCP depends on the individual– sometimes a ‘non-specialist’ may be the most appropriate person; designated SCPs should support and advise their colleagues as required Match SCP to patient and need (take into account language, ethnicity, gender and religion according to patient wishes) Support SCPs through debriefing and access to their line managers, peer support and/ or counseling as needed

Ensure an ongoing commitment to cultural sensitivity among staff members and as an organisation Recognise the complexity and diversity of culturally specific beliefs and practices Treat the patient as a unique individual; ensure that learning about local cultures and ethnicities is not viewed as a ‘box-ticking’ exercise 5

Cultural sensitivity

5.1. Culturally competent care

Explore patients’ and families’ beliefs about illness and the authority of healthcare staff and spiritual leaders on a case-by-case basis Try to identify any potentially harmful cultural, spiritual or other beliefs, and present the palliative care perspective sensitively but explicitly Among staff, foster awareness of organisational processes and their own worldview and relationship to others, and a commitment to being empathetic, open-minded and reflective Ensure confidentiality is upheld by all members of staff and the community involved in patient care, including local spiritual leaders

58

5.2. Language and interpreters 5.3. Patient and family expectations

Recognise that concepts have different meanings in different languages and cultures, and discuss sensitive issues with care Ensure access to trained and supported interpreters Explore patient and family expectations, identify areas of potential conflict and handle care provision with sensitivity

Ensure an ongoing commitment to education, training and support in the field of spiritual care 6.1. Implementing the recommendations

Raise awareness of spiritual dimensions of the illness experience; train and support all palliative care staff in basic spiritual care provision Recognise and accommodate the organisational implications of Recommendations 1-5, e.g. foster relationships with local faith leaders/ community groups, document spiritual well being and resources in patient notes

6

Organisational requirements

6.2. Understanding of spiritual well being and care

6.3. Providing patientcentred care

Consider spiritual well being intrinsic to quality of life and broader than religious belief and practice Consider spiritual care to be as important as other dimensions of care Refer patients to spiritual care with their permission and as part of routine practice, according to need Ensure inpatient units and outpatient and home care services are able to accommodate the religious needs of patients from BME groups (e.g. religious rituals, visits by members of faith community)

6.4. Staff support

Take into consideration and provide for the spiritual well being of staff

6.5. Quality improvement

Commit to ongoing quality monitoring and improvement in spiritual care (e.g. through audit of outcomes and meeting quality markers)

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Appendix 2: Quality markers Category

Quality marker(s)

Measure(s) -

Working with local faith and community groups

Evidence of mutual training and education

-

-

Evidence of referral to and from spiritual care providers in the community

-

-

Spiritual assessment

Evidence of spiritual assessment -

Spiritual resources and care

Documentation showing every patient’s spiritual (including faith) needs are discussed at multidisciplinary meetings Documentation of spiritual needs in patients’ notes Documented ways in which data from formal assessment of outcomes of spiritual care have been used to influence service provision

-

Documentation in patient records of the spiritual care services patients utilise in/ outside the healthcare setting, and their value and effectiveness for that patient Diverse range of media produced and disseminated to advertise the spiritual care services available to patients, e.g. posters, leaflets in appropriate languages, Braille and large type

-

-

Data on patient and/ or family satisfaction with the spiritual care they have accessed through the palliative care service, generated through e.g. the inclusion of spiritual care in the standard form used to assess satisfaction with care, and capturing informal feedback, including thank you cards and other communications from patients and families to spiritual care

-

Documentation in patient records of patients’ spiritual care needs and resulting action taken at regular intervals throughout the disease trajectory

Evidence of patient and family satisfaction with spiritual care services

Evidence that patients’ wishes for spiritual care are assessed and responded to continuously

Number of patients referred to spiritual leaders in the community for spiritual support Number of patients referred to the palliative care service by members of faith/ community groups, via GP or other healthcare professional

Evidence of the use of formal assessment tools in the audit of spiritual care Evidence that a range of appropriate spiritual care services are accessible to all patients

Number of workshops/ training courses held for members of local BME communities List of forums where workshops were advertised Numbers of workshop attendees from different BME groups and community organisations Number of organised visits to the palliative care service by BME faith and community group representatives

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Spiritual care providers

Evidence of liaising and sharing care with local spiritual leaders Evidence of training staff in spiritual care provision

-

Directory of local palliative care-trained faith leaders and representatives of faith and community groups held in the chaplain’s office and inpatient areas

-

Dedicated session on spiritual care provision in the induction program for all new staff; annual appraisal on spiritual care Number of in-service training workshops on spiritual care provision and numbers and types of staff who attended Attendance of spiritual care providers at national and/ or international palliative care conferences

-

-

Evidence of collaboration with training spiritual care providers in the community

-

-

Cultural sensitivity

Evidence of organisational commitment to providing culturally competent care

-

-

Organisational requirements

Evidence of commitment to spiritual care provision

Assessment of staff members’ cultural awareness and competence during induction and appraisals In-service training to foster core skills among staff Documented collaboration with local BME groups, e.g. conferences, visits by community members to the palliative care service (see Working with local faith and community groups) List of trained and supported interpreters available to staff members

-

Allocation of appropriate resources to the provision of spiritual care, including the time and funds for staff to provide spiritual care and receive spiritual care training

-

Agenda for moving forward with these recommendations, including: o Prioritisation of specific recommendations and commitment to locally appropriate quality markers o Development of a timeframe for implementation of the recommendations o Incorporation of recommendations and quality markers into organisational policy, strategy, budget, training plan and appraisal system

-

Percentage of patients and families accessing the palliative care service from specific BME groups in comparison with the percentage of people from those groups in the catchment area Evaluation of patient and family satisfaction with the palliative care service according to ethnic group

Evidence of implementing recommendations

Evidence of commitment to widening access to palliative care for BME groups

Number of clinical placements at the palliative care service taken up by (religious and non-religious) spiritual care providers from the community Details of teaching by palliative care staff on theological/ pastoral care/ chaplaincy training courses and in other community forums (e.g. HIV NGOs)

-

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Appendix 3: Attendees of the Symposium on spiritual care 1 2 3

Name Fr. Ezeakor Adolphus Anna Aguma Revd Art Barron

4 5 6 7 8 9 10

Revd Caroline Clarke Andrea Dechamps Asher Emetananjo Dr Rob George * Dr Richard Harding Ms Caroline Harvey Revd Mia Holborn

11

* Prof Margaret Holloway

12 13

Pamela Kaseke-Mushore Dr Jonathan Koffman

14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29

Abena (Abe) Konadu-Yiadom * Revd Nana Kyei-Baffour Bernadette McGlew Pat Morgan Revd Elias Moyo * Diana Murungu Diana Opio Dr Gillian Paterson Revd Jennifer Potter Jo Raven Vicky Robinson Ann Rhys Revd Felicia Stephen-Okoye Jean Sadowska Tariq Saleem * Lucy Selman

30

Vicky Simms

Role, Organisation Chaplain, King’s College Hospital Lambeth PCT Senior Health Promotion Adviser Macmillan Supportive and Palliative Care Chaplain, Guy’s and St Thomas’ (GSTT) NHS Trust Director of Spiritual Care, Trinity Hospice Director of Social work, St Christopher's Hospice He Intends Victory Consultant in Palliative Care, GSTT NHS Trust Senior Lecturer, Dept Palliative Care, Policy & Rehab., KCL Clinical Nurse Specialist, Palliative Care, Guy’s Hospital Head of Spiritual Health Care and Chaplaincy Team Leader, GSTT NHS Trust Professor of Social Work & Director of the Centre for Spirituality Studies, Hull University; Vice-Chair of the British Association for the Study of Spirituality; Social Care Lead, National End of Life Care Programme Compassion Acceptance Need (CAN) Lecturer in Palliative Care, MSc Co-ordinator and Sub Dean of Taught Postgraduate Studies in the School of Medicine, Dept.

Palliative Care, Policy & Rehab., KCL Leysian Missioner, Wesley's Chapel & Leysian Mission Chaplain, St Thomas’ Hospital Porticus UK Principal Social Worker, St Christopher's hospice Zhomba AIDS Care and Education Social Worker, St Mary’s Hospice, Birmingham Community Clinical Nurse Specialist, GSTT NHS Trust Research Fellow, Heythrop College Minister, Wesley’s Chapel Mildmay UK Consultant Nurse, GSTT NHS Trust Community Clinical Nurse Specialist, GSTT NHS Trust Divine Grace Ministries Palliative Care Social Worker, Guy's Hospital Research Fellow, Dept. Palliative Care, Policy & Rehab., KCL Research Associate & PhD Student, Dept. Palliative Care, Policy & Rehab., KCL Research Associate & PhD Student, Dept. Palliative Care, Policy & Rehab., KCL Policy & Rehab., KCL

* = speaker

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