QuarterlyCarePalliative 2022/Winter VIRTUALLY Telehealth and end-of-life care PAUSE An experience of art and conversation DEVELOPING OUR PRACTICE Vounteer managers conference NPCW2022
NSW snapshot: This November the 2022 PCNSW Biennial State Conference will be held in the beautiful seaside town of Terrigal, NSW. See article on page 8.
04 A word from the President 06 From the CEO 14 National Palliative Care Week 2022 30 News & Resources 39 Community Reports WalesSouthNewCarePalliative 14 10 084230 Welcome to your winter edition of Pallium!‘‘ C ntents Palliative Care Quarterly Winter / 2022 Pallium | 3
Welcome to your winter edition of Pallium! Here we are, halfway through 2022 already. I hope this edition finds you well, although I acknowledge the difficult winter many people in the health workforce are facing with influenza and COVID-19 still wreaking havoc. Please know you have our ongoing support. I would also like to take a moment to mention the extreme weather NSW has been experiencing in the past six months and the impact that can have on how we provide palliative care in the community. Our particular thoughts are with those in the Northern Rivers of NSW where there are still large numbers of the community in temporary housing and cut off from services and resources.
Please contact Palliative Care NSW if there is any way we can support your service or advocate on your behalf. In happy news, National Palliative Care Week 2022 was a huge success. Thank you to all who participated and celebrated around NSW. There is a great feature article in this edition with photos of celebrations and events. The week started with the official PCA National Launch at Bear Cottage. We then held a small event at the Art Gallery of NSW with stakeholders and various organisations in the palliative care field to relaunch the PAUSE Program for carers, that we are expanding over the coming months. On the Friday of NPCW 2022 it was also wonderful to see so many familiar faces and some new ones at our first in-person Professional Education day since 2019. We had a wonderful day of learning and reconnecting with friends and colleagues around the theme Palliative Care – It’s your right. As we mentioned in our previous edition of Pallium, both Linda and I attended the NSW Parliamentary Upper House Standing Committee on Law and Justice to give evidence at a hearing for enquiry into the provisions of the Voluntary Assisted Dying Bill 2021 in December. We have continued to communicate with the Ministry of Health since, calling for equitable access to Palliative Care around NSW. As many of you will be aware the Voluntary Assisted Dying Act 2022 passed through NSW Parliament on 19 May 2022. The legislation will come into effect on 28 November 2023, after an 18-month implementation period. NSW Health has informed us that it will work with the community and a broad range of health, aged care and other stakeholders to implement the framework set out in the legislation. The Voluntary Assisted Dying Act 2022 is available on the NSW ParliamentPalliativewebsite. CareNSW intends to work closely with other states where VAD has already been introduced to better understand the impact these legislative changes will have on the palliative care sector. We will also endeavour to provide ongoing education and support to our members regarding VAD, please feel free to contact us if there is any assistance we can provide. Watch this space as we develop supportive and educational resources over the next 18 months and beyond.
Reports MILESTONESMID-YEAR
Terese Smeal PCNSW President A word from the President “Please contact Palliative Care NSW if there is any way we can support your service or advocate on your behalf.”
4 | Pallium
Reports I support.havePleasewreakingandfacinghealthmanytheacknowledgedifficultwinterpeopleintheworkforcearewithinfluenzaCOVID-19stillhavoc.knowyouourongoing Pallium | 5
Linda Hansen PCNSW Chief Executive Officer From the CEO
Reports
LOOKINGAHEAD 6 | Pallium
Firstly, I would like to take this opportunity to thank all our members for bearing with us as we update our online systems to manage membership and payments. I realise there may have been some changes to how you renew your membership as we change over to the new system, and we are hopeful that it will make it a much simpler process in the future. If you are still unsure about your membership please feel free to get in contact with us via phone or email.
I would also like to mention that we have several new people in the PCNSW office. If you have attended any of our recent events, such as Education Day, you would have had the chance to meet Maria Lopez and Emma Scott-Stevenson. Both have been a welcome addition to our team. Maria and Emma have been kind enough to share some more information about themselves for this edition of Pallium to help you get to know them. Emma has also contributed a wonderful reflection piece about her internship at PCNSW in this edition. As you may have read, the NSW Government recently announced a significant funding boost to Palliative Care in NSW of $743 Million over 10 years. We have welcomed this announcement and look forward to continuing our work with the Ministry of Health over the coming months and years to ensure this funding adequately meets the needs of palliative care patients, carers, volunteers and workers. You can read our media release in response to this announcement here. We were fortunate to have our first in-person event since 2019 during National Palliative Care Week. It was wonderful to join you all at the Professional Education Day. We are very much looking ahead to the Conference in November, where we hope to see you all enjoying some learning and networking and sunshine on the beautiful Central Coast of NSW. Be sure to follow us on social media to see updates about speakers and events at the conference. Early bird registrations and accommodation deals are available now so be sure to log on to the conference website to secure your space. PCNSW also hosted our first forum to discuss homelessness and palliative care at the end of March. It was a wonderful opportunity to connect with services that we have not previously worked with and discuss the complex challenges in providing care to these vulnerable populations. Megan and Emma have been working on finalising a report that will contribute to a National report on this issue. We are hoping to share it with you all in the coming months. We would also like to hold a regional forum to discuss homelessness and palliative care in the future, and I would encourage you to contact Megan (megan@palliativecarensw.org.au)if this issomethingyouthinkwouldbe ofinterest.Wehaverecentlyre-engagedthePalliativeandAgedCareNetwork(PACN)andwouldliketoencourageanymembersworkinginAgedCaretocontactusifyouareinterestedinjoiningthisveryimportantnetwork.WearecurrentlyaddressingtherecentchangestoTheAustralianNationalAgedCareClassification(AN-ACC)carefundingmodelthatwillreplacetheAgedCareFundingInstrument(ACFI),andencourageanyfeedbackyoumayhave.Moreinformationandfactsheetscanbefoundhere.
Reports PCNSW hosted our first forum to discuss homelessness and palliative care. It was an opportunity to connect with services that we have not previously worked with and discuss the complex challenges in providing care to these populations.vulnerable Pallium | 7
Our Biennial Conference is happening this year in Terrigal from 3–5 November, and is an opportunity to learn from some of the best professionals in the field in a beautiful NSW destination.
8 | Pallium
NSWTerrigalNovember,3-5PalliativeCareNSWBiennialStateConference
• Facing the Future of Communication –new technology and skills in palliative care
The organising committee’s choice of theme, Facing the Future Together, offers delegates the chance to really challenge themselves and their practice by looking to the future. We encourage delegates to envisage how technology, collaboration, communities, environment and policy will change the way we engage in endof-life care more broadly in the years to come.
REGISTERNOW Sub-themes include:
Over recent years we have seen the resurgence of ‘normalising death’ and making death ‘everybody’s business’, with the uptake of Advance Care Directives, Last Days of Life tools, myriad literature, and communities initiating home hospices and death and dying awareness. We now look ahead to consider: What is the future for palliative care? How do we face that together?
• Facing the Future of therapeutics and innovations in palliative care
Early registrationbirdcloses20September
• Facing the Future of Dying – VAD: what’s ahead for palliative care? Implications? Experiences of other states and territories.
Pallium | 9
• Facing the future: Hope – the future of the palliative care workforce, are we ready?
Are you a member? Click here for more information on how to join Palliative Care NSW and take advantage of member discounts on the full conference registration fee. We have just about survived the pandemic storm and are now looking at the goals and challenges ahead at the Palliative Care NSW Biennial State Conference 2022: Facing the Future Together.
CAREEND-OF-LIFE& 10 | Pallium
Feature
PALLIATIVEVIRTUAL
During the COVID-19-related lockdowns, healthcare providers in Australia and Aotearoa New Zealand had to swiftly pivot to telehealth consultations to minimise face to face interactions. This change enabled palliative care clinicians to provide ongoing care for patients. For traditionally high-touch services, however, such a transition also posed unique clinical and ethical challenges. Using phone calls, and, to a lesser extent video calls, to review patients and families was a regular practice for many palliative care teams, but the scale and extent to which they used telehealth during the lockdowns was unprecedented. Tapping into clinicians’ experiences of navigating telehealth during this challenging time provided an important opportunity to explore the dynamics of such clinician–patient and family interactions and models of care.
“It’s a really good thing to do and it can really be effective, but it’s not the be all and end all”
(Using telehealth for palliative care)
Feature
Pallium | 11
With the support of a Health Research Council New Zealand activation grant, we formed a collaboration with researchers from the Cognitive and Neurological Disorders Symptom Node Subcommittee (CaND SNSC) of the Palliative Care Clinical Studies Collaborative (PaCCSC) and Cancer Symptom Trials (CST), University of Technology Sydney, Dr Katherine Bloomfield and Dr Aileen Collier (co-leads) from the Faculty of Medicine and Health Sciences, University of Auckland, and Dr William E Rosa from Memorial Sloan Kettering (MSK) Cancer Center, New York, who leads comparative work in the USA. Using Zoom, our team interviewed twenty-one clinicians from different disciplines across Australia and New Zealand who provided specialist or generalist palliative care via telehealth.
Some preliminary findings of this qualitative study are as follows: In the initial stages of implementing telehealth, some services adopted hybrid systems where nurses or other members of the multidisciplinary team visited patients while physicians dialled in for the consultation. Having overcome the initial challenges of familiarising themselves with new technologies, some clinicians were positive about using telehealth to expand their reach. Without the hassle of commuting, they could now optimize their time and ‘visit’ patients more often.
Tasked with meeting patients through a screen, over time, clinicians devised innovative ways to communicate effectively with patients and families, making them feel more connected. In the absence of rich visual and physical cues, clinicians improvised by asking more detailed questions to gain information or asking patients into giving them a virtual tour of their homes. While the inability to conduct detailed physical examinations virtually, posed an obvious challenge, some clinicians sought to overcome this drawback by co-opting patients and As virtual consults can make palliative care accessible to more patients, not everyone may benefit equally from this technological shift.
Feature
12 | Pallium
When telehealth is adopted more widely, this could significantly benefit patients in far-flung rural areas. Enthusiastic about telehealth’s potential to overcome barriers of distance and access, one clinician said: “I can only physically, in-person, reach so far, but if I can touch more people or spread my skills and knowledge to further places by having virtual consults, why limit myself to [working] locally? You could possibly do it nationally or even internationally, if need be.”
Clinicians were more hesitant to conduct virtual consults with older people who might not be as comfortable with or have access to technology, those with cognitive difficulties, and/or those with language barriers. Initiating discussions about these challenges in implementing telehealth for all patients can help clinicians share their experiences and work collaboratively to address the needs of different groups
Ms Sinchana Appachoo, Dr Aileen Collier, Dr Katherine Bloomfield, Associate Prof Annmarie Hosie; Dr Wei Lee, Prof Meera Agar; Dr Michael Chapman, Dr Vicki Jones; Dr Tess Moeke-Maxwell; Dr William E Rosa.
In addition to enabling clinicians to streamline their work and hold more consultations, they reported how telehealth supported family members. For example, how, in the absence of the limitations of physical presence, family members in different countries and time zones were able to join virtual consults and take a more active role in providing advocacy and emotional support for their loved ones.
While telehealth can help build a wider caring community around the person and their family, virtual communication also raised concerns in clinicians about security of patients’ medical data and privacy on calls. Further, even as virtual consults can make palliative care accessible to more patients, not everyone may benefit equally from this technological shift.
Pallium | 13
Theseof patients.discussions, spanning niggling tech issues to deeply vexing ethical and patient safety challenges of providing palliative and end-of-life care virtually, highlight the importance of having organisational guidelines in helping clinicians to navigate the moral and clinical dilemmas of choosing between virtual consults and face-to-face visits. With telehealth poised to become a standard part of palliative care provision, we need to engage reflexively with the subtle and other more perceptible shifts it brings in the relational space between clinicians, patients and families and wider informal as well as professional palliative care networks. Sustained research that draws on patients and family experiences in a range of settings, and currently underserved populations, would generate further insights on the potential benefits of this technology and practice and policy considerations to make safe high-quality palliative care accessible to all.
Acknowledgements: We thank all participants, the HRCNZ for funding the study, Dr Craig Sinclair for his contribution to the study design and Ms Linda Brown, National Manager, PaCCSC/CST.
With telehealth poised to become a standard part of palliative care provision, we need to engage reflexively with the shifts it brings in the relational space.
Feature their family members to perform physical assessments ordinarily carried out by a clinician. As different members of the multidisciplinary team drew on their clinical experience and intuition to develop their own techniques to work effectively with telehealth systems, there is scope to collect these insights more systematically and potentially incorporate them into educating and supporting clinicians in managing virtual consultations.
National Palliative Care Week (NPCW) was held from Sunday 22 May –Saturday 28 May, with the theme Palliative Care: It’s Your Right The theme seeks to raise awareness about the rights of all Australians to access high-quality palliative care when and where they need it. During NPCW virtual and face-to-face events were held across the country to acknowledge and celebrate the commitment and dedication of all those working and volunteering in the palliative care sector across Australia. Here you will find some of those events, photos, and videos. Thank you to all who made NPCW an amazing week of recognition and celebration! 2022WeekCarePalliativeNational NPCW 2O22 IN PICTURES 14 | Pallium
National Palliative Care Week launch at Bear Cottage
Above: Bear Cottage Nurse Manager, Narelle Martin. Top right: PCNSW CEO, Linda Hansen and Management Committee Member, Colleen Carter. Bottom right: Mad Hatter at Bear Cottage.
On Sunday 22 May, PCNSW President Therese Smeal, Board Member Colleen Carter and CEO Linda Hansen joined Palliative Care Australia at Bear Cottage, NSW’s only children’s hospice, to officially launch National Palliative Care Week 2022. Nurse Manager at Bear Cottage Narelle Martin spoke to those in attendance about the facility – “Children don’t come here to die. They come here to live.” We would like to thank all those working at Bear Cottage for their hard work and dedication in the support and care of paediatric palliative care patients and their families.
“Bear Cottage is not a place of darkness and despair, but one of light, love, laughter and most importantly life.”
- Narelle Martin, Nurse Manager Bear Cottage
Pallium | 15
2022WeekCarePalliativeNational
Palliative Care: Human Rights and International Law
Top: Palliative Care NSW President, Therese Smeal. Above: Joan Ryan OAM and Dr Frank Brennan AM.
2022WeekCarePalliativeNational 16 | Pallium
PCNSW Education Day
Exploring the theme for the week: Palliative Care – It’s your right
International Law recognises the right to Health Care, therefore the right to Palliative Care.
Palliative Care NSW CEO, Linda Hansen, and President, Therese Smeal, opened the event. We were then fortunate enough to have knowledgeable and compassionate speakers such as Dr Frank Brennan AM, Joan Ryan OAM and Dr Craig Sinclair with us for the rest of the day. Attendees came from all over NSW to explore the theme for the week Palliative Care – It’s your right
Dr Frank Brennan AM taught us about Human Rights and International Law. We learned that the International Law recognises the right to Health Care, therefore the right to Palliative Care. Organisations like the United Nations for example states “Palliative Care needs greater attention…”; also the World Health Organisation (WHO) continues to work to support countries in the implementation of the 2014 World Health Assembly (WHA) Resolution 67.19 on Palliative Care which states the provision of Palliative Care is a “moral imperative of health systems and it should be integrated into all levels of health care”.
In the UK a Bill was recently introduced that acknowledges the Government has an obligation to provide Palliative Care. The Government has made a crucial change to their Health and Care Bill which will mean that in the future, end of life care must be provided by law in every part of England. On a national level, countries that have health policy relating to equity and accessibility must extend these services to include Palliative Care.
On Friday 27 May we ended our National Palliative Care Week and came together for our Education Day. Our first face to face event since 2019 and the atmosphere reflected the joy of bringing us together again to learn more about Palliative Care.
STORIESWATCHTHESE
Real life stories of people with advanced life-limiting disease and their choice to live an empowered and dignified life.
2022WeekCarePalliativeNational Pallium | 17
The ‘I am Living’ Campaign We also had the beautiful opportunity to learn from the ‘I am living’ campaign created by Joan Ryan OAM and Dr Frank Brennan AM. This campaign has been created with the support of Calvary Health Care, Catholic Cemeteries + Crematoria and Mercy Health, with the valued and ongoing support of other organisations and many individuals.
As part of this section of the day, Joan and Frank shared real life stories of people with advanced life-limiting disease and their choice to live an empowered and dignified life, as defined by themselves, their families, and carers.
Creative Joff Chappel, loveable Rose Cox and caring Barry Gallagher were the stories shared during the presentation that left us with great insights about their needs at this stage of their lives and lessons about life itself! These were courageous, generous, and honest stories that can give us a real perspective about the benefits of palliative care for them, their families and carers.
Right: Palliative Care NSW CEO, Linda Hansen welcoming the attendees for the day.
The Enhanced Advance Care planning and life Review Longitudinal Intervention Project (The EARLI Project) aims to adapt and tailor a combined ‘life story and advance care planning intervention’ for older adults receiving home care services in Australia. It is a fantastic initiative funded by the NHMRC from 2022 to 2026. It involves health economics evaluations and training for aged care providers in delivering the project intervention. EARLI will be soon delivering more news including a survey for older adults (65 years+) to pilot and validate the study measures. Life Story Work and its benefit for advance care planning
Dr Craig Sinclair spoke to us about how important and useful is to incorporate the life story of older adults when making plans for end of life according to their needs, values and beliefs. He highlighted that the work of Advance Care Planning happens during the course of serious and chronic illness rather than at the end of life, hence the importance of starting early and taking the whole trajectory into account to deliver the best Palliative Care possible.
Stay tuned to our news as we will supporting this program. In the meantime click here to read more. Dr Craig Sinclair and PCNSW CEO, Linda Hansen.
Dr Craig shared statistics about advance care planning in Australians, mentioning that only 14% of older Australian have an advance care planning and 25–30% have ‘some form’ of it on file. These numbers mean many people face ‘crisis’ medical situations without any previous discussions or plans, and substitute decision-makers are often burdened with uncertainty and distress at the time of having to make a decision on behalf of their loved ones. Based on these statistics and factors such as rapid growth of the ‘home care’ sector, ageing population, cultural diversity and the need for earlier opportunities to engage with advance care planning the EARLI Project was developed.
2022WeekCarePalliativeNational 18 | Pallium
The room split into group discussions to address some questions from Joan, then came together to share experiences, reflections and ideas that they can carry forward in their professional lives.
Dr Craig Sinclair is a postdoctoral research fellow in the Centre of Excellence in Population Ageing Research, based at the University of New South Wales. His training is in psychology, and his key research interests include older adult decision-making, advance care planning and supported decision-making.
•homelessness:Primary:experienced by people without conventional accommodation (example: improvised dwellings)
• Tertiary: experienced by people that are staying in accommodation that falls below minimum community standards (example: boarding houses or caravan parks) From this understanding, discussions were opened about the challenges homeless people have when accessing Palliative Care. Lack of access to proper care, medical history, cultural assumptions of Palliative Care and Homelessness
Joan Ryan OAM closed the event with an ‘eye opening’ talk about Palliative Care and Homelessness. Extending our understanding of homelessness she started by explaining that there are three categories of
If you are interested in knowing more about this topic feel free to get in touch with megan@palliativecarensw.org.au and follow our member eNews. In the coming weeks PCNSW will release a report that is currently being finalised by Emma Scott-Stevenson and Megan Burke on initial findings from a Sydney Metropolitan based research project on Homelessness and Palliative Care. PCNSW hopes to extend this research to include regional areas of NSW later in 2022.
Dr Frank Brennan AM began his career in medicine, working in both Sydney and South Africa, before he decided to study law, while continuing to practice medicine. He embarked on a brief legal career before returning to medicine as a GP at the Aboriginal Medical Service in Redfern. Three years later he decided to explore his growing interest in palliative care. Dr Brennan divides his time between two roles - renal-palliative care physician with the Renal Supportive Care service at St George and Sutherland hospitals, and palliative care physician and medical officer at Calvary Hospital, where he treats mainly Motor Neurone Disease and cancer patients. Joan Ryan OAM is the recipient of the Order of Australia in 2019 for her significant contribution to palliative care nursing. Joan has vast experience in palliative care specialist nursing within the acute, community and in-patient setting. She is also known as an advocate for better palliative care locally and internationally and generously contributes to national media including radio and television events such as Radio National and television interviews/panel discussions. She has been a Member of the Management Committee of Palliative Care NSW for more than 10 years.
2022WeekCarePalliativeNational Pallium | 19
• Secondary: experienced by people frequently moving from one shelter to another (example: youth refugee or emergency accommodation)
homelessness causes (drugs, alcohol, etc.) were discussed in the context of palliative care. Joan brought the attention to real statistics vs what is culturally assumed and she inspired everyone in the room to get to know these vulnerable patients, to be compassionate towards them and to really consider existential needs as well as medical needs in order to provide appropriate care.
PCNSW President Therese Smeal Bell and Russ Gluyas –
Cassie Morgan and Fiona Jessiman, Parkinsons NSW.
2022WeekCarePalliativeNational 20 | Pallium
The LOVE Project (Living Older Visibly and Engaged).
(L–R): Carolyn Wilkinson, Jacqui Willoughby, Julie Gissing and Sarah Potter.
Nico
Linda Hansen and Rob Wilkins from ACI.
Palliative Care and the Arts Engagement Program event was the perfect celebration of National Palliative Care Week! On Wednesday 25 May, we gathered at the Art Gallery of NSW and heard from Danielle Gullotta about the Arts Engagement Program PAUSE that we have developed in partnership with the Art Gallery of NSW over the last couple of years.
Danielle Gullota, Senior Access Programs Producer at Art Gallery of NSW, spoke about the benefits of Arts in the wellbeing of the carers.
Therese Smeal, president of Palliative Care NSW, opened the event highlighting the importance of this year’s National Palliative Care Week theme Palliative Care – It’s your right Palliative Care and the Arts Engagement Program
With the Arts-Engagement Program and the use of the Art Cards, opportunities are created for individuals to imagine and think creatively about art so that “it sparks curiosity and imagination”. Individuals reach their own interpretation of an artwork through focused observation and group discussion that allows “connecting, sharing and engagement through art”. This program has had a positive impact helping carers take time to “PAUSE”, focusing on the present moment and building beautiful connections. It has provided a safe and creative space for those caring for a loved one at end-of-life as well as those recently bereaved to form social connections with others in similar circumstances and a space to express their feelings throughout the grieving process.
Danielle Gullota and Linda Hansen.
About the Arts Engagement Program – PAUSE
2022WeekCarePalliativeNational Pallium | 21
Linda Hansen, Palliative Care NSW CEO, embraced the opportunity to show appreciation to healthcare workers and carers in the palliative care community, extending the ongoing support to programs such as PAUSE to support them. It was an evening of learning, creating connections in a beautiful environment, welcoming other organisations and peak bodies to build partnerships with PCNSW that will improve end of life outcomes for patients, families and the people that care for them. Thanks to all attendees and to the Art Gallery of NSW for making this event a great one!
Professor Miriam Johnson, Director of Wolfson Palliative Care Research, University of Hull, United Kingdom gave a National Palliative Care Week presentation to staff, students and colleagues at the Centre for Improving Palliative, Aged and Chronic Care through Clinical Research Translation (IMPACCT) at University of Technology Sydney. Miriam explored the topic of Palliative Care and Heart Failure – an ongoing injustice, providing insights into: The need; Does palliative care make a difference? And how are we doing at finding solutions and tackling the issue of uncertainty head on. The presentation was well attended and after more than two years of distance between partners in the UK due to COVID travel restrictions, the 1:1 interaction was welcomed to discuss this important issue.
2022WeekCarePalliativeNational 22 | Pallium
University of Technology Sydney
Far left: Prof Miriam Johnson. Left: Prof Meera Agar.
Vanessa Moore, UTS
2022WeekCarePalliativeNational Pallium | 23
Medical and specialist nursing – alongside all staff and employees advocated for all patients within Bowral & District Hospital for open discussions from bedside palliative care support through to facilitating discharges and links with community palliative care teams.
Emergency Department (ED) in-service were visited by Medical Palliative Staff Specialist from Camden, Dr Kuawahta. A general introduction to support the ED from CNS2 PC, J Spinley and Dr Kuwahata. Although it was only a micro level promotional rounding, it encouraged an ‘ad lib’ open conversation around what palliative care is and how they support patients and families in receiving palliative care referrals.
The Palliative Care Week Trolley was a point of opportunity to stop and inform staff from all departments that it was National Palliative Care Week. Countless lovely freebies including seeds, pens and bags alongside a couple of information sheets were provided with both the Palliative Care Australia definition and also the ACI End of Life and palliative care flyer for clinicians. Many activities were held to raise awareness and spread information. Large posters were placed in the hospital foyer and on the two inpatient wards and education boards and by public lifts. Two in-services specific to National Palliative Care Week and a Q&A attended in IPUG and IPU1 (two inpatient wards). Staff were given a small post card to complete for a poster headed ‘What Palliative Care means to me...’. Following the in-service, staff wrote an individual response on a card (to be made into a poster). Conversations were held by Care Navigation Strategy Palliative Care (CNS PC) and allied health, pharmacy, ward clerks, hotel services staff whilst wandering with display trolley throughout the hospital wards. It encouraged an ‘ad lib’ open conversation around what palliative care is and how they support patients and families in receiving palliative care referrals.
Janice Spinley, Clinical Nurse Specialist 2 Palliative Care, Bowral & District Hospital
Bowral & District Hospital
Special palliative care cupcakes were shared to acknowledge the lovely clinicians who work with palliative care patients and promoted palliative care via a photo shoot which everyone enjoyed participating in.
Royal Prince Alfred Hospital
2022WeekCarePalliativeNational
An event to mark National Palliative Care week for 2022 was organised at Royal Prince Alfred Hospital, Aged Care, Palliative Care, Immunology & Infectious Diseases ward
Sandhya Chand, Registered Nurse, Royal Prince Alfred Hospital, Aged Care, Palliative Care, Immunology & Infectious Diseases ward
24 | Pallium
Staff wrote heartfelt messages about what they want for their patients
During National Palliative Care Week, Blacktown Hospital engaged with visitors, volunteers, staff and patients about what they would want if they were facing a palliative diagnosis and end of life.
2022WeekCarePalliativeNational Pallium | 25
The Supportive Care Volunteer service visits patients on C71 who need social support, want a hand massage or to write letters to loved ones to ensure patients requests are met at this difficult time.
The focus of palliative care is all about symptom management so that people have quality of life and are able to live well in the time they have.
Staff wrote heartfelt messages about what they want for their patients including “dignity and choice” as well as to ensure every patient “knows that they matter to the end of their life”
Blacktown Hospital
Kylie Clark, Volunteer Manager Palliative Care, WSLHD, Supportive and Palliative Care Services Kylie, Dr Bernadette and Dr Monica. Dr Bernadette and Dr Monica.
Palliative care volunteers Theresa Dwyer and Huangyuan Chen.
Western Sydney Local Health District, Palliative care volunteer service
National Palliative Care Week is Australia’s largest annual awareness-raising initiative held to increase understanding of the many benefits of palliative care.
During Palliative Care week, across the Western Sydney Local Health District (WSLHD), visitors, staff and volunteers are being asked to express what they believe their ‘rights’ to be in receiving palliative care by writing on paper hearts what they would want if they were facing their end of life.
Access to timely palliative care allows people with a life-limiting illness to keep doing what they love with friends and family.
WSLHD Palliative Care Staff Specialist Dr Clare Zachulski, is passionate about patient rights and the role of palliative care clinicians in ensuring these rights as people near the end of life. “It’s a patient’s right to live well every day of their life and this is what palliative care aims to do,” said Clare. “It supports people to spend more time doing the things that matter most to them.
“One of the great myths about palliative care is that it is only end-of-life care, but it is so much more than that; anyone with a life-limiting illness has the right to live as well as possible, for as long as possible.”
Kylie Clark, Volunteer Manager Palliative Care, WSLHD, Supportive and Palliative Care Services
Palliative care is also about supporting the loved ones of those approaching end of life by helping them to live through their grief and bereavement.
At Westmead Hospital on Tuesday 24 May, WSLHD Buddhist Chaplain, Don Yasalal, wrote that he would like “to be in a calm and quiet room” when his time comes.
2022WeekCarePalliativeNational
The theme of National Palliative Care Week this year is It’s Your Right, a sentiment that was reiterated this week by WSLHD director of Supportive and Palliative Medicine, Dr Sally Greenaway. “Palliative Care is about living your best life no matter what,” said Sally.
“Palliative Care is about living your best life no matter what”
Below: Assistant Buddhist chaplain Don Yasalal and Theresa Dwyer. Right: ED Registered Nurse Joanna Fen, Felicia Michael and Huangyuan Chen.
Staff specialist Dr Clare Zachulski, clinical nurse consultant Felicia Michael and supportive care volunteers Theresa Dwyer and Huangyuan Chen.
L–R: Dr Jus Rakhra (Staff Specialist), Dr Sally Greenaway (Director Supportive and Palliative Care Medicine WSLHD) and Felicia Michael (Clinical Nurse Consultant)
2022WeekCarePalliativeNational
2022WeekCarePalliativeNational Sutherland Hospital Sutherland Hospital health practitioners supporting Palliative Care week activities. 28 | Pallium
2022WeekCarePalliativeNationalSt Josephs Hospital St Josephs health practitioners supporting Palliative Care week activities. Pallium | 29
Resources IPEPA VIDEO SERIES ANIMATIONWATCHSERIES 30 | Pallium
This year National Aborigines and Islanders Day Observance Committee (NAIDOC) week was celebrated from 3–10 July. NAIDOC Week is an opportunity for all Australians to learn about First Nations cultures and histories and participate in celebrations of the oldest, continuous living cultures on earth.
Resources
This year’s theme for NAIDOC Week is Get up! Stand up! Show up!
You will also find a fantastic series of animations made by the Indigenous Program of Experience in the Palliative Approach (IPEPA) These innovative videos draw on humour to help demystify and destigmatise palliative care and dying for Aboriginal and Torres Strait Islander peoples.
Culturally safe and responsive palliative and end-of-life care for Aboriginal and Torres Strait Islander Communities trainings and tools
Our office stands on the lands of the Gadigal People of the Eora Nation. We recognise the importance of their connection to place and community on these lands and pay our respects to Elders, past, present, and emerging and extend that acknowledgment to all First Nations People. As part of NAIDOC Week, we celebrate the history, culture, and achievements of Aboriginal and Torres Strait Islander peoples throughout NSW and Australia.fortailored information and training resources, including fantastic from The Gwandalan National Palliative Care Project, providing frontline staff with appropriate tools to support the delivery of more impactful, meaningful, culturally safe and responsive palliative and end-of-life care for Aboriginal and Torres Strait Islander Communities.
For more information on how to join or to contribute to this fantastic project, go to www.iamliving.org.au
updates&News
The I Am Living public awareness initiative and campaign and website are brought to the Australian community by Calvary Health Care, Catholic Cemeteries & Crematoria and Mercy Health, with the valued and ongoing support of other organisations and many individuals.
• To provide credible information about quality end of life care based on assessed need;
• To communicate that each and every person matters to the last moment of their life. Thanks to the courage, honesty, and generosity of eleven persons with advanced life-limiting disease, the significant people in their lives and caregivers, the campaign shares with you eleven highly intimate, authentic and educative encounters. Our participants elected to live an empowered and dignified life, as defined by themselves. We extend our warmest gratitude to the eleven I Am Living participants who, no doubt, will continue to touch the hearts and lives of many through sharing their lived experiences.
Watch these stories here
By sharing experiences of people with advanced illness, this campaign is hoping to make these experiences more familiar to other people to help reduce some of the fear and anxiety about lifelimiting illness in the community.
AMLIVING
Pallium | 31
I
• To promote and encourage positive conversations and planning about end-of-life care, dying, death, loss and grief;
• To learn from people who have found life, hope and healing as they approach the end-of-life; and
The I am Living campaign is a Living End-of-Life Experiences Video Project that aims to help Australians build for themselves a more complete picture of what living with advanced illness and the end-of-life journey can be like.
The campaign’s purpose is to expand understanding, and address community anxiety and some of the fears around the deterioration of health, dying, death, loss and grief. The campaign objectives are:
Newsupdates&News
The Voluntary Assisted Dying legislation has passed and will become law in NSW around November 2023. Much discussion has taken place – much has been misinformed, all has been heartfelt. There is no doubt that Palliative Care has received some very unfair and incorrect commentary during the process of the legislation being developed. Health professionals and volunteers who choose to work in Palliative Care do so because they understand how important it is to have careful, professional care as people reach the end of their lives. They are rightly proud of their clinical and interpersonal skills. It is now time to fully commit to increasing ongoing support for Palliative Care across NSW. We are developing dedicated pages on our website and Facebook page to answer VAD questions. We will be working with the NSW government, our colleagues from other states where VAD has been in place for a time and with employers in NSW to gather as much information as we can to provide appropriate support to you as we approach the time when Voluntary Assisted Dying becomes law in NSW. We encourage our members to engage in ongoing conversations with us to enable us to best address your concerns. ASSISTED DYING LAWS PASS IN NSW NSW
VOLUNTARY
JOBS IN PALLIATIVE CARE Check out the latest palliative care health professional roles listed on the Palliative Care
website. READ OURPAPERPOSITION onlineView 32 | Pallium
The package includes $650 million over five years to:
• improve services for people with late stage chronic and degenerative conditions, and cancer
• improve partnership with non-Government organisations, primary care and aged care services. A further $93 million will be used for capital investment to redevelop and refurbish NSW Health facilities, including newly dedicated palliative care units at Westmead Hospital and Nepean Hospital.
STAFF PROFILE: EMMA SCOTT- STEVENSON $743
TO ENHANCE END-OF-LIFE-CARE IN
PCNSW CEO Linda Hansen said, “this funding will provide certainty to services and organisations when developing programs to enable people to live well with a life limiting illness and support people and their families at end-of-life.”
• support consumer choice and excellence in endof-life and palliative care
• strengthen virtual care, transport and equipment programs
Maria is a friendly person who loves to hear from members and the public about their experiences, she is excited about learning more about this sector to be able to spread awareness to many people as possible, and ultimately, serve to the best of her abilities.
Maria utilises her degree in technology with her communication skills and experience to highlight the fantastic work that Palliative Care NSW is doing throughout the year.
Read the full media release here.
I am studying a Bachelor of Social Science, majoring in Social Justice, at Macquarie University. As part of my internship, I am working on the Homelessness and Palliative Care project, which aims to examine the availability and accessibility of palliative care services to homeless individuals. The forum I attended was an incredible opportunity to meet some of the key stakeholders working in relevant fields, and hear each of their individual experiences. I am hoping to work in a position which focuses on supporting and improving social structures at a community level. I am delighted to be working for Palliative Care NSW during this internship, as this organisation provides the kind of social support which I one day hope to be a part of. MILLLION NSW
Pallium | 33
Maria Lopez joined Palliative Care NSW in May 2022 as the Communications Officer, having previously worked in the Education sector in similar roles.
• further strengthen outpatient and community health services
• boost hospital capacity and implement bestpractice models for supportive and palliative care
• improve access to pain management services for patients with life-limiting illness, to help patients and their family and carers
Palliative Care NSW welcomes the $743 million funding boost to Palliative Care in NSW by the State Government over the next five years.
updates&News
• employ an extra 600 nurses, allied health professionals, doctors, and support staff
8 August 2022 Dying to Know Day 10 August 2022 National Grief Awareness Day 7 September 2022 Quarterly meeting: NSW Network of Managers of Palliative Care Volunteer Services13–14October 2022 Australian Paediatric Palliative Care Conference 8 October 2022 World Hospice and Palliative Care Day 3–5 November 2022 PCNSW Biennial State Conference 5 November 2022 International Volunteer Managers Day 5 December 2022 International Volunteer Day 7 December 2022 Quarterly meeting and christmas lunch: NSW Network of Managers of Palliative Care Volunteer Services UPCOMING EVENTS Events 34 | Pallium
5pm abstract submission closes 8 August 2022 Author notification 20 September 2022 Early bird
Registration open 10 July
Our theme, Facing the Future Together, offers delegates the chance to really challenge themselves and their practice by looking to the future. We encourage delegates to envisage how technology, collaboration, communities, environment and policy will change the way we engage in end of life care more broadly in the years to come. Over recent years we have seen the resurgence of ‘normalising death’ and making death ‘everybody’s business’, with the uptake of Advance Care Directives, Last Days of Life tools, myriad literature, and communities initiating home hospices and death and dying awareness. We now look ahead to consider: What is our vision for palliative care? How do we achieve that together?
20 April
and
• The future of therapeutics and innovations in palliative care
Meetings take place quarterly on the second Wednesday of the month at 10am at the Palliative Care NSW offices and online via Zoom.
• Communication – new technology and skills in palliative care
Pallium | 35
Events
Call for
PCNSW Biennial State Conference 2022
• Hope – the future of the palliative care workforce – are we ready? We look forward to seeing you in November in Terrigal! Click here to go to the conference website and find out more about our exciting program of events. the Conference: 2022 abstracts 2022 2022 registration look forward to seeing you in November in Terrigal! conference website find out more about our exciting program of events.
Visit the
open 20 May
NSW Network of Managers of Palliative Care Volunteer Services
• Climate change – can there be a sustainable future at end of life?
The role of the Network is to ensure best practice for NSW Managers of Palliative Care Volunteer Services and to provide support for members of the Network. Membership is open to Managers of palliative care volunteer services from NSW. If you are new to your role managing palliative care volunteers, please get in touch so we can welcome you to the network.
Sub-themes include:
Important dates regarding
closes VOLUNTEEERVISITHUB We
ProgramsPCNSW Arts engagement Pause program experience exploring What Matters Most in the Australian Galleries of the AGNSW 24 May 2019. AGNSWPhotography:PAUSE A program andprofessional,forvolunteerinformalcarers 36 | Pallium
ProgramsPCNSW Book your Pause experience 13 August 2022 Making connections CLICK HERE TO BOOK 20 August 2022 What matters most CLICK HERE TO BOOK 27 August 2022 Compassionate care CLICK HERE TO BOOK Time: 9.30am Duration: 1 hour, 30 minutes Cost: FREE (booking required)
Take some time out and come on a mindful journey focused on a curated selection of artworks from the We invite you to engage in a guided experience of art and conversation using slow-looking techniques observe, explore, and discuss your insights on art and life. It’s an opportunity to engage with art, and your own feelings and thoughts in a supported environment; share experiences with likeminded people; reflect on your own identity your caring role; and enjoy ‘in-the-moment’ pleasure. You’ll also discover how mindful activities can support self-care and learn skills and strategies that can be transferred to the care environment. The experience is facilitated by artist and researcher Dr Gail Kenning and Danielle Gullotta, senior access programs producer at the Art Gallery of New South Wales. The program is a partnership between the Art Gallery, Palliative Care NSW , the University of New South Wales and the University of the University of Technology Sydney. This program has been developed specifically for those who are supporting a person receiving palliative care, whether in a professional, volunteer or informal capacity. We will ask you how you identify in your caring role, you do not have to answer, but it will help us to best facilitate a shared empathic experience.
collection.
Pallium | 37
November3–5 CrownPlaza NSWTerrigal NSWTerrigalNovember,3-5PalliativeCareNSWBiennialStateConference
Standard placements, where the applicant spends 2–4 days with their local specialist palliative care provider, provides a unique opportunity to spend time with a specialist palliative care team.
Both standard and reverse placement applications for 2022–2023 are now open.
Placements are available for all health disciplines from across all health sectors (e.g. community, aged care, GP practice, private hospitals, public hospitals, Aboriginal Health providers, Justice Health, NSW Ambulance). Both education sessions and placements are free and employers can claim financial incentive to release staff to undertaken a PEPA placement.
Reports
Face to face and virtual education sessions are available across the State. You will also find a number of FREE on-line modules that you can complete at your own pace. A certificate is issued at the end of each module and can be used towards professional education points.
The Program of Experience in the Palliative Approach (PEPA) is a Commonwealth funded project. PEPA aims to raise the awareness of a palliative approach to care across all health disciplines by providing funded short observational placements and education sessions.
Funded by the Australian Government Department of Health
PALLIATIVE CARE EDUCATION & TRAINING COLLABORATIVE
Those working in Specialist Palliative Care Services and interested in partnering up for education sessions (face to face or virtual) and/or placements are encouraged to make contact with PEPA NSW via email to discuss options. Placement application, education opportunities, online modules, resources and contact details can be found on the PEPA Education webpage.
Pallium | 39
Reverse placements, where the specialist palliative care nurse goes to the workplace and spends two days with 6–8 nominated staff members, is very popular at the moment. REVERSE placements are a great opportunity for Aboriginal Health providers, Aged Care Facilities and Regional Hospitals.
• PCOC - Talking about your symptoms flyer
Halfway into 2022 and if the first half of the year is anything to go by PCOC are certainly looking forward to seeing, and supporting, a huge range of innovations and quality activities happening in our NSW Palliative Care Services. We are delighted to introduce Clinician’s corner to our PCOC update, providing valuable data-driven insights into priority areas for palliative care services.
• PCOC –AssessmentSymptomScale Video
SAS resources:
Clinician’s corner: Priority areas for patient assessment –
The Symptom Assessment Scale
• PCOC - SAS Form for completion by patients
Reports
• PCOC Ireland – Patient experiences of the PCOC SAS
Improving Patient reporting of symptom distress is a priority area for palliative care services. Research has shown that Patient reports are feasible in most clinical scenarios, although proxy reporting is required sometimes, for example, in the terminal phase. The Symptom Assessment Scale (SAS) is a patient Reported Outcome Measure used in PCOC. The SAS is used by patients to evaluate their perceived distress from common symptom including pain, insomnia, nausea, bowel problems, appetite problems, breathing problems and fatigue. The distress from each symptom is rated by the patient on a numerical scale of 0-10, zero representing that distress is absent for that symptom and 10 being the worst possible distress. If the patient’s distress from a symptom has not been assessed, this can be recorded as Not Assessed. The SAS helps identifies the patient’s priorities in terms of distress, monitor and track individual symptoms over time and ensure that care is focused on what is important to the patient. There are a number of resources available to support both clinicians and patients with using the SAS.
• PCC4U – Using the SAS
40 | Pallium
Palliative Care Outcomes Collaboration
Keep up to date with PCOC NewsletterTwitterYouTube
Advanced workshop: Using PCOC reports – 24th August Learn how to use PCOC reports for quality improvement and service development For more information on the November workshops please contact pcoc@uow.edu.au
Standardising processes for timely, patient-centred care Sacred Heart Community Palliative Care, Sydney Aim: To standardise and incorporate PCOC assessment tools into visit scheduling and discharge planning to enable timely, patient-centred care in response to identified needs.
Fundamentals webinar - 3rd August Increase competency in the clinical application of the assessment and response framework Assessment and Response workshop – 17th August Learn about strategies and resources to embed PCOC into routine practice and improve patient outcomes
Resources developed: Visit schedule, workload planner and discharge process.
Reports
The PCOC team are gearing up to produce reports for the Jan – Jun 2022 period. These reports include your service data alongside national figures and allow for data-informed quality improvement and benchmarking. The reports will be made available to services by the end of September and so we encourage you to get in touch to book a time to go through the PCOC reports with your team and a PCOC Improvement Facilitator in early October. eMR update PCOC have been working collaboratively with the NSW eHealth end of life care team with the rollout of the end-of-life care solution for eMR. We are delighted to see the positive impacts this has had for palliative care services participation in PCOC. There have been a number of enhancements made as a result of this collaboration and we are looking forward to the introduction of the ‘Not-assessed’ option in the eMR module. If your service is now past the eMR go-live support, Statewide Service Desk is the first point of call for all eMR related questions. For more information on PCOC and eMR please contact lkable@uow.edu.au
Thinking about doing a quality improvement project? PCOC Improvement facilitators can support you in your quality plans and help write these up in a Quality Improvement report. PCOC have a number of resources available in our Quality Improvement Guide that can support audits, case reviews and QI efforts. Previous service QI reports are available on the PCOC website and include resources developed by palliative care services. Read through Sacred Heart’s QI report below to see how staff incorporated PCOC tools into routine practice.
PCOC workshops for all disciplines working in Palliative Care PCOC are running our suite of National workshops in August and November and spots are already filling fast. These workshops cater to all members of the multidisciplinary team, all clinical settings, and for the various stages of implementing and using PCOC. If you would like further information or to register, Click on the relevant workshop below .
Patient outcome reports: Jan – Jun 2022
Pallium | 41
We are fresh off the heels of another successful Palliative Care Volunteer Managers Conference, held over two days in the cool, crisp air of Orange in central western New South Wales. I’d like to thank the organising committee for the many hours spent bringing this all together.
ProgrammeSupportVolunteerServices
BowmanKate 42 | Pallium
Reports
A lot has been happening here in the Volunteer Support Services Programme. Since the last edition of Pallium, we have made it through National Volunteer Week in May, hosted two sessions of Accidental Counsellor training for volunteers, contributed to a new National Volunteering Strategy consultation with Volunteering Australia, begun research for the next snapshot into palliative care volunteering, and held a conference for volunteer managers. Most recently, my time has been consumed with research. Our first major “Snapshot” survey was undertaken in 2014. Before then, there was no complete data on the number and location of palliative care volunteer services in NSW, how many volunteers were engaged, or what their roles and responsibilities were. It has been four years since we published our second major survey, Snapshot 2018: A Review of Palliative Care Volunteering in NSW. This time I have added a new set of questions that aim to capture the impact of COVID on volunteer services that I am keen to report on. You can read our reports from the 2014 and 2018 Snapshots on the VolunteerHub website.
Volunteer Managers come together to develop their practice at the conference in Orange.
Reports
Palliative care volunteers aren’t the same other hospital volunteers but rather are highly trained to work within the end-of-life space.
Western Sydney Palliative Care Volunteer Service started in 2016, since then they have provided practical, emotional, and social support to patients, families, and carers in the Supportive and Palliative Care Unit at Mount Druitt Hospital, in C71 Medical Oncology at Blacktown Hospital, and in the community.
Presenters offered their wisdom on topics as diverse as sorry business and multi-cultural awareness, conflict management and resolution, how to better support volunteers to cope with grief and loss and unleashing our inner creative as a form of self-care.
Providing respite to carers is huge part of their role, especially for volunteers working in community settings. There is much evidencebased research which upholds the benefits of palliative care volunteers for patients and families.
While the NSW Network of Managers of Palliative Care Volunteers meet quarterly over Zoom, as a group, this was the first chance we had to see each other in person for quite some time. There was a broad mix of more experienced and newer Volunteer Managers in attendance which lent a great diversity of perspectives to the conversations and activities.
Western Sydney Palliative Care Volunteer Service volunteers Kathy Bassett, Angie Vista, and Pranita Kumar.
Palliative care volunteers aren’t the same other hospital volunteers but rather are highly trained to work within the end-of-life space. They provide empathetic psycho-social support and help reduce existential distress and suffering not just to clients but also to their families.
Pallium | 43
More recently they have expanded their service to include biography volunteers. Keep up the good work!
toCongratulationsWesternSydneyPalliativeCareVolunteerServiceonfiveyearsofoperation.
Kate Bowman, PCNSW Volunteer Support Services Programme Manager
The most valuable part of this network is the power of peer support with knowledge shared and gained for the benefit of all. Managers were given time to put their heads together in a very practical and powerful two-part workshop, firstly identifying common areas of concern within their practice and then finding solutions together. The two most notable takeaways from this were the sense that in many services the role of a palliative care volunteer manager is not well understood and therefore under-valued, and there is a lack of respect and meaningful recognition of the role of palliative care volunteers.
Palliative Care Volunteer Managers make sure their volunteers are up to this task. They recruit, train, and support volunteers, they enforce policy standards making sure everyone has their police check, working with children check, is up to date with vaccinations etc, they liaise with staff and clients to find a volunteer who is the right fit for each situation, often across multiple locations and in a variety of settings, they write and enforce comprehensive new COVID safety protocols, and so much more. Volunteers should be recognised for their meaningful contribution and considered an essential part of any palliative care team. They directly contribute to better end-of-life outcomes for people in your community. For a volunteer service to thrive it needs to have a well-supported and resourced Volunteer Manager. They are the pin that holds it all together –let’s acknowledge the importance of their role.
CareSearch is funded by the FlindersandDepartmentGovernment’sAustralianofHealthmanagedbyUniversity.
CareSearch’s new Evidence and Translation Centre now provides access to an expanded and upgraded range of evidence resources for health professionals. The online centre includes clinical evidence summaries, links to palliative care guidelines, and relevant palliative care tools for use in practice and research.
VISIT TRANSLATIONEVIDENCETHE&CENTRE
44 | Pallium
Reports
New Source for Palliative Care Evidence to Improve Care
The most important additions are two new training resources. The first focuses on helping individual health professionals develop their knowledge and skills in evidence-based practice. The second set of resources looks at how to translate and implement the evidence for use in the workplace and in health services.
Reports
Find the Evidence and Translation Centre at www.caresearch.com.au
“With an ageing population and increasing chronic disease as well as life limiting illnesses such as cancer, the number of people needing palliative care is increasing. All health professionals will need to be able to support people who are coming to the end of their life and meet their care needs.”
“Understanding the ways that evidence can improve practice, the models and frameworks available to assist in this process, and how to introduce and gain acceptance by staff and management, can only better serve positive outcomes in delivering palliative care.
“The CareSearch website provides a trustworthy source of information and resources for health professionals and people with palliative care needs and their families.”
Professor Jennifer Tieman, CareSearch Director and Director of the Research Centre for Palliative Care, Death and Dying said, “CareSearch has created a one-stop evidence resource that is contextualised for the needs of health professionals providing palliative care.
Professor Tieman continued, “Death and dying will affect us all. Our aim is to ensure everyone receiving or providing palliative care has access to trustworthy evidence-informed information to support person-centred decision-making and the transition to palliative care.
.
Access to evidence is a critical first step in realising the value of evidence to improve care. A well-informed workforce that can find and use evidence in their practice and in their services, can improve the care of people coming to the end of their life.
Pallium | 45
CareSearch has created a one-stop evidence resource that is contextualised for the needs of health professionals providing palliative care
I am an undergraduate student at Macquarie University, completing a Bachelor of Social Science and majoring in Social Justice. As part of the Professional Social Research Project unit, I was fortunate enough to work on the Homelessness and Palliative Care Project with Palliative Care NSW (PCNSW). This experience provided me with abundant learning opportunities and I am truly grateful for the way the PCNSW team guided me through this placement.
Access to palliative care is a human right, and should be available to all who need it. A forum of key stakeholders was held earlier this year, in order to assess the current procedures in place when homeless individuals seek palliative care. The stakeholders consisted of health, social and non-government organisation workers, all of whom had experienced difficulties in providing or sourcing palliative care to homeless patients in need. Through the project, it became apparent that there are extensive issues surrounding the availability and accessibility of palliative care services which cater to homeless individuals. Severe disconnections exist between medical, palliative care and homelessness services, and it is excessively difficult for homeless patients to access the palliative care they require. One of the key quotes from a forum which summarises the need for this project is:
StevensonScott-Emma
“There is a responsibility to provide palliative care to whoever you are, whoever wants it, whoever needs it … and we’re not doing that.”
atonReflectionmytimePCNSWReflection
46 | Pallium
At the commencement of this project, there was little available data which depicted the current measures taken when a homeless individual requires palliative care within Metropolitan Sydney.
The Homelessness and Palliative Care Project aimed to identify homeless individuals requiring palliative care, and determine the services available to them within Metropolitan Sydney. Specifically, the project focused on “the barriers that inhibit, or prevent access to, palliative care by those experiencing homelessness” (PCNSW, 2022). The project was funded by Palliative Care Australia, and will be combined with a second project focusing on Regional NSW later in the year.
‘‘
( L–R): PCNSW Deputy CEO Megan Asbury, CEO Linda Hansen, Communications Officer Maria Lopez and Intern Emma Scott-Stevenson.
I am deeply grateful for the time I have spent working with PCNSW. The members of this organisation and the wider palliative care community could not have been more welcoming, and I have enjoyed every moment of this
I have always felt extremely passionate about social issues, and was eager to engage in a current social research project.
position, this opportunity has provided me with a better understanding of such organisations, and the critical work which they conduct. I have always felt extremely passionate about social issues, and was eager to engage in a current social research project. It has become clear that there are severe issues within the systems designed to provide palliative care to homeless individuals, which desperately need to be corrected. The added trauma which is faced by homeless individuals when they cannot receive the care they require is truly horrendous. For individuals who already face so much, such complex and deeply traumatic situations are incomprehensible. As a result, I am incredibly proud of the project which I was fortunate enough to be involved in. While I had positive expectations of this unit prior to the commencement of the semester, I could not have hoped for a better placement.
It is imperative that these issues are addressed across the state, and it is hoped that this project will propel discussions within medical and governmental communities.
Pallium | 47
I am deeply grateful for the time I have spent working with PCNSW. The members of this organisation and the wider palliative care community could not have been more welcoming.
Reflection
Asplacement.myfirstprofessional
Palliative Care Quarterly Winter / 2022 Palliative Care NSW Suite 706, 50 Clarence St, Sydney NSW 2000 02 8076 5600 / palliativecarensw.org.au