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the

Review September 2012

COMMUNITY

CHOICE & COLL ABOR ATION HOSPICE NEW ZEALAND 20TH PALLIATIVE CARE CONFERENCE

20th Hospice New Zealand Palliative Care Conference 2012

In This Issue:

14-16th November 2012, The Langham Hotel, Auckland, New Zealand

Message from Mary..... 2

We have a great line up of international and New Zealand keynote speakers planned for the three day programme. There are also over 70 local presenters involved in Conference covering a wide range of topics from areas such as spirituality and culture, aged care, paediatrics, pharmacy and workforce issues. Places are still available for each of the Masterclass sessions on the day prior to Conference – Tuesday 13 November:

• Hospice Kaimahi o te Motu Hui

Palliative Care Conference 2012

You can view the full programme for the

Keynote Speakers

masterclasses and conference on our website, and

International.................. 3

you can also download a registration brochure and register online here: http://www.hospice.org.nz/ conference-2012/registration-info Conference 2012 is fast approaching with early

Palliative Care Conference 2012 Keynote Speakers New Zealand................. 8

bird registrations closing on 5 October. After

• Collaborative Spiritual Care led by Bruce Rumbold

this date the full registration rate will apply so please

• Review & Guidance of Local Research led by Joachim Cohen

you get the best rate available.

Also on Tuesday 13 November, we will be offering:

November and hope you enjoy this preconference

• Nurse Leaders Network Workshop

issue of the Review.

register as a delegate prior to 5 October to ensure

We look forward to welcoming you to Auckland in

Around & about........... 10


Kia Ora Welcome to this preconference edition of The Review. We are delighted to have such an array of well-respected keynote speakers from both New Zealand and overseas. Not only are they experts in their fields, but all are excellent speakers, willing to share their knowledge, research and philosophy with conference delegates.

Mary Schumacher CEO Hospice NZ

The upcoming conference will be strategic, practical and forward thinking - it will challenge your thoughts and inspire you in your work caring for people with a life limiting condition. Naturally, the conference is also an excellent time to meet up with colleagues and friends from throughout New Zealand and overseas while enjoying the social elements the conference has to offer.

the

Review September 2012

Thank you to all Hospices of Auckland. We are extremely grateful to everyone involved for their time, input, creativity and commitment. We have been thrilled by the range of abstracts submitted and accepted for Community, Choice and Collaboration as the programme has come together over the past few months. Some highlights to look out for are: Wednesday 14 November, 11.30am How specialist palliative care Pharmacists can enhance your hospice multi-disciplinary team Thursday 15 November, 11.30am End of life care for Maori living to advanced old age in Aotearoa, New Zealand: A study to identify research priorities and methods Friday 16 November, 11.30am Embracing Spiritual Care in the context of whole person care I encourage you to support your conference, register now, book your flights and plan to make the most out of the conference. I look forward to seeing you all in Auckland in November!

Warm regards

Mary Schumacher Chief Executive Hospice NZ

Disclaimer: Unless otherwise stated, images used in this publication are not related to people/person’s mentioned in the articles. They are purchased from a Photo Library with full model releases from all involved.

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Introducing... As a delegate at Community, Choice & Collaboration you will have the opportunity to hear from a range of speakers reflecting the multidisciplinary nature of hospice care and also our place in the wider health care sector. We have interviewed a number of our keynote speakers to give an insight in them personally, their backgrounds and also their conference address. Thank you to all our speakers for giving their time to the 20th Hospice NZ Palliative Care Conference and to this edition of The Review.

Keynote speakers – International Proudly sponsored by Mundipharma

Professor Joachim Cohen Joachim Cohen’s research focuses on aspects of end of life care from a population health perspective. Rather than the quality of the patient-caregiver relationship and individual patient outcomes, his research interest includes the availability and accessibility of palliative care, circumstances of dying within populations and quality monitoring of health care services.

Joachim is a medical sociologist, a postdoctoral fellow of the Research Foundation Flanders (FWO) and a professor of the End of Life Care Research Group of Ghent University and Vrije Universiteit Brussel. He has conducted award-winning, large scale cross-national research on end of life care, using population databases.

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At the November conference, Joachim will deliver a keynote speech about place of death – titled Dying in Place, Results and Insights from International Studies. In a themed parallel session, he will discuss the use of quality indicators set in palliative care in Flanders. ``A particular interest of mine has been to look at cross-national variations in location of death for various sub-populations – e.g. cancer patients, dementia patients, palliative care populations,’’ Joachim says. ``As we all know, there is an overall preference among terminal patients and their informal caregivers for death to occur at home and there are several indications that dying at home compared with in an institution can contribute to a better death, while having a potential cost-saving effect both for the patient and for society.’’ Joachim’s research shows 31 percent to 85 percent of cancer patients die in hospital in European countries. ``With the International Place of Death (IPoD) study, my colleagues and I have collected death certificate data from a full year in 13 countries from different continents, including several European countries, Mexico, Canada and New Zealand.’’ Joachim’s presentation will include the first results of the IPoD study and results on what is known regarding evolutions in place of death preferences, its contribution to the quality of care, and on strategies to avoid hospitalisation at the very end of life.

``From a sociological perspective, the place of death may be considered a robust indicator of how societies broadly approach death and dying, and how they accordingly organise their end of life care. From a health care policy perspective, cross-national comparisons enable identifying factors which facilitate home death.’’

“Such an individual approach to the end of life may be sufficient, and in fact most appropriate, to meet the needs of the dying person… but it may be inadequate to address the problems on a population level.’’ Joachim says there is an urgent need for public health to adopt dying and palliative care in all its aspects as a major public health priority, for instance in national health strategies. Palliative care should also adopt a public health perspective to improve circumstances of dying at a population level. Joachim was born in Bree, a town in the rural province of Limburg, in Flanders, Belgium. After his master’s degree in sociology, he began his academic research career in 2002, as a junior researcher for the Tempus Omnia Revelat study group at the Vrije Universiteit Brussel. He then worked in the End of Life Care Research Group, Department of Medical Sociology, Faculty of Medicine at the Vrije Universiteit Brussel, obtaining his PhD in May 2007. He is newly married and lives with his wife Dorine in Bree. He has an interest in alternative music and plays keyboards in a band called De Brassers. This will be Joachim’s first visit to New Zealand.

Joachim is also working on the development of a core set of quality indicators for palliative care. His basic training as a sociologist, and a PhD in social health sciences, may have shaped Joachim’s population health approach to end of life care and his interest in using large scale populationbased databases. Joachim says palliative care has usually applied a very individual approach, with the needs of the dying person as the primary concern, and responsibilities towards the family and the support network also considered.

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Associate Professor Greg Crawford Greg Crawford will be importing some culture and rhythm to the conference with his presentation Music to Die For. A palliative medicine physician who combines his professional life with a love of music, he has played the piano since the age of seven and took up the pipe organ during his medical intern year. ``There is a wealth of music practice currently and in the past that can hopefully broaden our humanity and ability to connect with the people we care for at a personal and human level,’’ Greg says.

Greg says the addition of university tasks to his direct clinical work allows him to help the next generation of palliative care doctors develop skills and understand the field. He teaches medical students and postgraduate students within the School of Medicine and gives some teaching sessions for health psychologists and the masters of surgical sciences. One group of patients particularly interests Greg - people who do not have cancer but a life limiting or fatal illness. ``The needs of this group are still not well understood and the current model of palliative care that we work with is really built around the needs of people with cancer. I am increasingly aware that this model does not translate without some significant reorganisation of policy, resources and practice.’’ When he started working in specialist palliative care full time 15 years ago, Greg says the rhetoric was that the system would eventually not need specialist palliative care as all generalists would have a palliative care skill set. ``I do not think that this is really an achievable or desirable goal. There is always going to be a need for high quality palliative care. I think that we will see an increase in collaborative co-ordinating positions between sectors and disciplines.’’ One challenge will be how to assist colleagues to feel comfortable talking about the approaching end of life and to see that a symptom patient-centred focus of care is vital alongside a curative or interventional focus, he says.

“I think that we will need to continue to show by example but also will need to increase the focus on education and support rather than just providing the care ourselves.’’

``I hope that not only will I be able to give insight into some fabulous music, but also might explore some of the music that I would rather be dead than have to listen to, or perhaps might encourage me to rise from my death bed to turn it off.’’ Greg is the Mary Potter associate professor of palliative medicine at the University of Adelaide and works with the Central Adelaide Palliative Care Service and at Mary Potter Hospice, North Adelaide. He has research interests in the psychological issues associated with end of life care, the trajectory of illness and prediction of survival and the care needs of patients with non-malignant endstage disease. Greg’s basic medical degree is from the University of Adelaide and his doctoral degree from Flinders University was titled Depression in Palliative Care Patients in Australia: Identification and Assessment’. He has recently completed a study considering end of life issues for people with COPD (Chronic Obstructive Pulmonary Disease).

The assessment and provision of quality care is fragile and easily can be watered down or not acknowledged, Greg says. Greg was born in Adelaide and is a fifth generation South Australian of English, Irish and German descent. His academic and musical leanings became apparent at school. ``I was terrible at sport and still could not catch a ball even if my life depended on it,’’ he quips. ``I was fortunate to be good at sight reading so that I managed to continue to have piano lessons even when it did not seem very `cool’ to be learning.’’ Greg spent 12 years as a GP on Kangaroo Island, off the coast of South Australia. His ``mid-life crisis’’ was retraining in palliative medicine. He has visited New Zealand many times and hopes to reacquaint himself with Auckland during the November conference. ``Palliative care in New Zealand appears to have more of a charitable focus than in Australia and it is interesting to see how access to different or limited medications can alter practice.’’

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Dr Heather Richardson Heather Richardson splits her working life between two jobs – national clinical lead of UK charity Help the Hospices and director of strategy at St Joseph’s Hospice in East London. Being part of daily hospice life, while engaging nationally on issues that will affect hospices across the UK, is a balance Heather appreciates and values. Prior to joining Help the Hospices, she was clinical director at St Joseph’s. A current major redesign of the UK’s National Health Service will likely result in palliative care staff working in a context of long term financial strain, Heather says. ``There is every indication that resources to support hospices are at best fixed and at worst likely to reduce. Paradoxically we are being called to care for more people than ever before.’’ Most UK hospices are working hard to increase access for people with conditions other than cancer -- the socially excluded or marginalised and young people who are living longer with life limiting conditions. Heather feels that at a societal level, there is growing interest about what makes a good death and people are increasingly, and appropriately, becoming more demanding of good care. Hospices are under pressure to do more, whilst retaining a model of care that is intimate, person-centred and individual.

“I have always liked the holistic approach to end of life care offered by hospices and want to think further about how we ensure that we offer that to anyone who is terminally ill regardless of diagnosis, age or illness trajectory.’’ Heather is particularly interested in ways that we build community capacity to support people who face the end of life – as patients, family members or informal carers. Her presentation at the November conference will look at opportunities afforded hospices to proactively and imaginatively engage with the communities they serve. She supports hospices’ historical relationship with communities who have helped shape their development. ``We mustn’t throw that away, particularly in the name of delivering a professional service. We need to find a way to do both and my presentation will look at that opportunity and how it is best embraced.’’

Heather was born in Kenya, East Africa, to parents who raised her with a strong sense of justice and a commitment to make a difference – particularly around resolving social inequalities. Most of her working life has been in hospice care, spanning children’s as well as adult services, in clinical leadership, senior management and academic roles. She is a registered general and mental health nurse, has a master’s degree in health management and a PhD, with research concerning users’ experience of day hospice. Heather’s husband is a priest in the Church of England; a relationship which Heather says has taught her much about the value of community. Their children remind her of the pleasures of life and relationships and what living well really means. This will be Heather’s first visit to New Zealand and part of her efforts to look beyond the UK at innovative models of care, alternative methods and death in different societies. ``I have no doubt this trip will be terrific in teaching me more, and reminding me of how much I don’t know.’’

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Dr Bruce Rumbold Bruce Rumbold is a firm believer in working with communities to take account of end of life issues and the way we organise our lives together. He and his colleagues call this Compassionate Communities – a public health approach to end of life care that affirms compassion as an ethical imperative for health. Bruce is director of the Palliative Care Unit at La Trobe University, Melbourne, where his responsibilities include co-ordinating health promoting palliative care and spiritual care academic programs, alongside developing public health approaches to end of life care.

Bruce’s multidisciplinary interests are supported by postgraduate qualifications in physics, practical theology and health social science. Prior to joining La Trobe he was from 1986-2002 Foundation Professor of Pastoral Studies at Whitley College, an affiliated teaching institution of the Melbourne College of Divinity. He is editor, with Mark Cobb (Sheffield) and Christina Puchalski (Washington DC) of the recently published Oxford Textbook of Spirituality in Healthcare. Bruce’s palliative care unit operates from a public health model and is supported by the Victorian Department of Health to attend to social and spiritual dimensions of palliative care. He lists one challenge as: ``Our finitude, the strict limits mortality places upon what we can expect or achieve, is not always the most popular topic for public debate: but that makes some public discussion doubly important for people who have had their lives disrupted through illness, injury, loss, disability, imminent death, in their own experience or the experience of people they love.’’ Bruce’s hope for the future is that ``palliative care do itself out of a job – that we’d start to think about the whole enterprise of healthcare in the way we currently think about palliative care’’. Bruce will also lead a half-day session on Collaborative Spiritual Care and a concurrent session on Evaluating Community Interventions.

“Introducing the idea of spirituality into healthcare settings – and even more so introducing specialist spiritual care practitioners – can create a number of tensions”

At the November conference, Bruce’s keynote address will explain Compassionate Communities and how it explores structures and processes by which communities can care for members who live with end of life issues, maintaining their participation in the community. ``In the last few years there has been renewed emphasis on the need for healthcare practitioners to be compassionate, particularly in their care of ageing and dying people,’’ Bruce says. ``No one argues against this ideal, but strategies for enacting it receive limited attention. There is a gap between rhetoric and reality, not least, I will argue, because many of the skills and resources we need for compassionate caring, and for living and dying well, are actively undermined by current social, economic and political attitudes and practices.’’

``One is between recognising the uniqueness of each person’s spiritual path and the need for an organised approach to spiritual care. Another is a tension between sharing information within the multidisciplinary team and respecting the confidentiality of spiritual conversations. Yet another can be between different understandings of spirituality within the team and amongst clients, families and friends. ``Ensuring that these tensions are constructive is essential lest spiritual care either be put into the too hard basket or be reduced to a form of pop psychology.’’ Bruce was born in Melbourne and has been a choral singer all his adult life. He has just completed collecting the full set of Bach Cantatas from the John Eliot Gardner Bach pilgrimage in 2000. He is a former runner but now prefers to walk. Bruce visited New Zealand in 1995 for four days at St Francis Friary for a School of Ministry. He is hoping to spend a couple of weeks here around the November conference, with his wife Jean (also a lecturer in public health).

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Keynote speakers – New Zealand Proudly sponsored by the Ministry of Health Dr Michal Boyd Michal Boyd is interested in the increased health needs of older people in residential aged care. The title of her presentation at the conference is Collaborative Palliative Care in an Ageing World. Michal is a gerontology nurse practitioner and a senior lecturer with the School of Nursing and Freemasons’ Department of Geriatric Medicine at the University of Auckland. She would like to see innovations in end of life dementia care that include increased support for aged care staff, better communication and support for families about what to expect when a loved one is dying from dementia, and more systematic advanced care planning and integration of specialist care for those with dementia. ``We are facing the increasing challenges of the ageing population and the increasing end of life needs of those with chronic illness. This demographic shift requires development of models of care to improve the palliative care skills and support of those working with older people,’’ Michal says. ``I am interested in models of care that integrate specialist care (both palliative and gerontologic) into residential aged care and also community care teams to increase quality of care provided overall.’’ Michal’s research group has been analysing data from those in aged care in Auckland and has found interesting trends of mortality. ``The majority of deaths for those over 65 years old in New Zealand occur in residential aged care facilities. At the conference, I will explore how palliative care is changing and what international models are emerging to cope with the ageing population.’’ Michal was born in the USA, started her professional life as a biology teacher, before completing a master’s degree focusing on mammalian physiology.

`` I volunteered for hospice and I was very impressed with the nurses there and decided to become a nurse myself. I went to the University of Colorado and completed a nursing doctorate and nurse practitioner training.’’ Michal has worked as a gerontology specialist nurse and nurse practitioner since 1993 and has held joint clinical and academic appointments with University of Colorado, AUT and University of Auckland School of Nursing. She moved to New Zealand from Colorado in 2002. She is currently co-investigator of an intervention study to integrate multi-disciplinary teams in aged care with the aim to maintain the health of residents and prevent unnecessary hospitalisations.

Dr Ross Drake Ross Drake is the only paediatrician in New Zealand specialising in palliative care and pain medicine. He is clinical director of the Paediatric Palliative Care and Complex Pain Services teams at Starship Children’s Hospital in Auckland. His presentation at the Hospice NZ conference - The 3 Cs and Children - will provide an insight into what it means to work with life-limited children and their families. It will weave in current work being done to develop a national clinical network for children’s palliative care - Ross’ long held vision and goal. The ``meandering course’’ to his current role started with a Bachelor of Science degree in Wellington then a medical degree at Otago Medical School, followed by postgraduate training in general practice and a diploma in obstetrics and gynaecology.

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This was punctuated with a spell out of medicine to pursue the endurance sport of triathlon when the ``drudgery’’ of being a house officer dampened Ross’ enthusiasm for medicine. ``This was not, however, wasted time. It allowed me to mature personally and gain an understanding of my strengths in life as well as in medicine,’’ he says. Back on the job and having been up most of the night for a delivery, Ross was driving back to an afternoon clinic. ``I can still distinctly recall being in the trance of driving and saying out loud, to no one but myself, `Paediatrics is what I want to do!’.” ``The care of children has always imparted upon me the greatest sense of satisfaction as a doctor, whether that was during my time as a general practitioner, hospital resident or as a paediatrician,’’ Ross says. His professional interests are now in neuropathic and central pain syndromes and the decision-making process at the end of life in children. His two small, interdisciplinary teams at Starship are unique in New Zealand.

``If I were pressed to provide just one hope for the future, it would be for children requiring palliative care to be seen as deserving of improved funding, as the current level of $450,000 for children and $60 million for adult palliative care does not seem fair or reasonable.’’ Ross grew up in Upper Hutt. After his eventual specialisation in paediatrics, he undertook a fellowship in palliative medicine for children, worked at Mercy Hospice in Auckland and honed his palliative care skills at Great Ormond Street Hospital, London and The Children’s Hospital at Westmead, Sydney. Ross also practises hypnosis ``so as to better engage the subconscious in therapy of patients and myself’’. Walking, occasional gym attendance and New Zealand wine are things he enjoys. ``My personal interests have changed over the years from aerobic endurance events requiring frenetic kinetic energy, to participating in more leisurely pursuits compliant with having a paunch of potential energy,’’ Ross says. ``However, the quiet time spent with family and friends has to be the most rewarding.’’

Professor Kathryn McPherson Rehabilitation specialist Kathryn McPherson will be speaking about person centred care, drawing on her work with people with brain injury, stroke and cancer, as well as the work of others in related fields. ``I am interested in how our current structures might allow person centred care to happen, or get in the way. And what do our patients/ clients see as the key attributes for this,’’ Kathryn says. Her current position is professor of rehabilitation (Laura Fergusson Chair), School of Rehabilitation and Occupation Studies, AUT University, Auckland. She is also director of the Person Centred Rehabilitation Centre in the Health and Rehabilitation Research Centre (HRRC). Kathryn’s work and research involves mainly long term neurological conditions but she is interested in how to help people live as well as possible with any condition that leaves them with difficulties doing everyday things that are meaningful to them. ``That is why I enjoy rehabilitation as a discipline – it rethinks what are the outcomes of importance and therefore what the most appropriate interventions might be.’’ Kathryn was born in Australia with largely Scottish ancestry. After training as a nurse, she completed midwifery and health visiting in Edinburgh, Scotland. A psychology honours degree at the Open University (UK) was followed by her PhD at the University of Edinburgh, graduating in 1998. Kathryn was associate dean postgraduate studies at the University of Otago (Wellington) and reader in rehabilitation at the University of Southampton (UK) before joining AUT in 2004. She writes for peer-reviewed publications and voluntary organisations and disseminates research and scholarship in training for organisations in New Zealand (District Health Boards, Accident Compensation Corporation and others). She is a visiting professor, Kings College, University of London, and the University of Southampton. Kathryn has lived in Auckland for the past eight years and plays several musical instruments, including the electric ukulele. ``I really enjoy working with and talking with people who are interested in the social and contextual factors of health. A number of my favourite academic colleagues are researching in the area of palliative care both here but also in the USA and UK and I find our discussions some of the most interesting and challenging of those I engage with,’’ she says.

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Around & About This popular column allows the extended hospice family to get to know one another a little better. Each edition we select people in a range of roles and locations and ask them a set of questions about their work and them personally. Thank you to Diane Banbury, Hospice Marlborough & Les Solomona, Mary Potter Hospice for taking the time to share with us.

Diane Banbury

Les Solomona

Social Worker Hospice Marlborough

Spiritual Carer Mary Potter Hospice, Wellington

Brief background to your professional career – and your current role with hospice, what led you here?

Brief background to your professional career – and your current role with hospice, what led you here?

After graduating at Canterbury University I worked in a Mental Health Rehab service in Christchurch working firstly with adults then with adolescents in the community. I thoroughly enjoyed this and found the knowledge gained around mental health invaluable. While doing this I began and completed the Post Graduate Diploma of Supervision in Social Services through Massey and I still enjoy today the role of supervising social workers and community workers. A few years later I began working as Social Worker in Schools in the Linwood area working with children and their families. A change of location two years ago meant a move to Blenheim where I continued this work in Marlborough and Nelson until recently changing roles and starting at Hospice Marlborough as their Social Worker.

Hello my name is Leslie Solomona. I am a New Zealand born Samoan, married with three children. My two older daughters live and work in Australia so its’ just my son at home he’s in year 10 at Rongotai College (my old College).

Current challenges facing your hospice service? I feel I haven’t been here long enough to comment on this one! Highlight of the past six months/twelve months for hospice/ your role with hospice I have been with Hospice Marlborough almost two months and the highlights to date would be seeing and learning from the amazing staff and volunteers who give tirelessly to the Hospice and the people who come into Hospice. I see it as a privilege to work with the patients and their families and I am blown away by their courage and strength. What do you do to relax? I enjoy reading and gardening and spending time with family, grandchildren and friends. What would we always find in your fridge? Yoghurt, blueberries and chocolate!!

I have been a Presbyterian minister for 12 years now and I am still involved with the church court through the Wellington presbytery. Two years ago I went to work for Presbyterian Support Central. My role there is with the Family Works side of the business. The title they have given me is ‘Pacific Island Community Worker’ (much like a social worker). I help run the Family & Domestic Violence conferences, mainly targeting the pacific island people. I also facilitate parenting programmes and in the past have trained mentors for at risk youth (mentees) and provided supervision as well. I work all day Mondays, Tuesdays and Wednesday morning at PSC and then come across to Mary Potter Hospice on Wednesday afternoon and all day Thursdays and Fridays. Obviously I have two jobs, the Hospice job is a shared position. Current challenges facing your hospice service? I am one of two Spiritual Carers at Mary Potter Hospice. I have been working here for 10 months and I guess a challenge would be how busy the Hospice can get with many patients entering our service. Not just cancer patients but those who come in for respite etc. Highlight of the past six months/twelve months for hospice/ your role with hospice A highlight for me is being able to facilitate the needs of the patients and their family members. I have learnt that it’s all about the patients’ needs and not mine. As a Spiritual Carer I am aware that the definition of people’s spirituality is broad. I have enjoyed being alongside the Samoan families (about 5 or 6 Samoan families have been through since I started). I can speak the lingo so it’s helpful for the nurses when we need clarification or to give instructions. What do you do to relax? I play sport - Masters Basketball every Tuesday and going to the gym helps me to relax or rather keep me in shape for work and play. What would we always find in your fridge? Do you really want to know? (nothing out of the ordinary, nothing exciting!)

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Thanks

to our supporters

Thank you to all the individuals, companies and grant makers who have made donations to support our work. We really couldn’t do it without you!

National Partners:

Our long term supporter:

And our conference supporters:

Mundipharma | Ministry of Health | Pub Charity

Hospice New Zealand 57 – 59 Courtney Place P O Box 6660 Wellington 6141 T: 04 381 0266 F: 04 381 0264 www.hospice.org.nz

The Review - Sept 2012  

News and information about the hospice and palliative care sector in New Zealand.

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