Pallium Winter 2023 edition

PEOPLE AT THE HEART OF PALLIATIVE CARE

All the community action of National Palliative Care Week

HOMELESSNESS & PALLIATIVE CARE

A scoping study

FAREWELL LINDA

Celebrating an extraordinary CEO

NSW snapshot: Gosford NSW – home to the Central Coast Local Health District. See article on page 28.

Continuing to support & advocate

A word from the President

Welcome to the Winter edition of Pallium 2023! We have had a great start to the year at PCNSW, and we look forward to the coming months ahead of us. I am very proud to be serving as PCNSW President, and I look forward to continuing working with the PCNSW staff, Management Committee, and our members.

I would like to begin by thanking our CEO Linda Hansen who is sadly departing her role as CEO of PCNSW. Linda has worked with PCNSW for 19 years, and during this time she has played a pivotal role in establishing PCNSW as the peak body for Palliative Care in NSW. We would like to thank Linda for her tremendous efforts in shaping PCNSW into the organisation it is today. Linda will be assuming the role of CEO of Palliative Care ACT, and we are certain her outstanding leadership and tireless dedication to Palliative Care will assure her success in her new role. We wish her all the best, and look forward to watching her excel in her new position as CEO in ACT.

As we move through the winter months, we realise how difficult it can be for our health workers while rates of COVID and influenza continue to surge. It is important during this time to take care of yourself as you deal with the added pressure. On behalf of the team, I would like to thank you for your unending efforts despite all that has been thrown your way. Our efforts continue to support and advocate for our members and the needs they share with us. We ask that you please continue to send us your stories and feedback so that we can work in a way that best supports you.

I have greatly enjoyed my first months serving as the President for PCNSW. We continue to work with the Ministry of Health (MoH) and develop our relationship with them. We have

been very pleased to welcome some of the Ministry’s representatives to our events, and look forward to having them at future events. We are also actively planning the next Biennial State Conference for 2024, and we look forward to reconnecting with everyone in a wonderful new location in NSW!

This year’s National Palliative Care Week was another huge success, and it was great to be able to connect with our members during the events throughout the week. PCNSW held a screening of Live the Life You Please to launch the week, and it was lovely to experience such a moving film with our members and the PCNSW community. It was also fantastic to be able to explore current and meaningful topics with the attendees of PCNSW’s Education Day. We were able to have some fun in the art session, and it was wonderful to see everyone getting involved and enjoying themselves!

The discussions surrounding VAD in NSW are more prevalent than ever as we near the implementation date in November. We were pleased to be able to facilitate some discussion during our Education Day about the VAD Bill and its implications for healthcare workers, services, patients and their families. We feel it is important for our members to have the opportunity to discuss and learn about the upcoming changes, and we will continue to provide new information as it develops.

We look forward to hearing from our members as we all continue through 2023!

Felicity Burns PCNSW President

This year’s National Palliative Care Week was another huge success, and it was great to be able to connect with our members during the events.

Image: Collaborative artworks created the art therapy session, Education Day 2023.

From the CEO

Welcome to the Winter Pallium for 2023! We hope this edition finds you well as we move into the second half of the year, though we would like to acknowledge the difficulties caused as COVID-19 and influenza continue to spread during the winter months. We would like to thank our members and the wider healthcare community for their perseverance during these difficult times, and please know you have our ongoing support.

I was invited to meet with our Patron Her Excellency the Honourable Margaret Beazley AC KC, Governor of New South Wales, with our President Felicity Burns and Vice President Therese Smeal. We were delighted to discuss the importance of Palliative Care and opportunities for growth under her Patronage, and we look forward to welcoming her to coming events.

The staff at PCNSW continue working to support and advocate for our members and the community. The new staff members have settled in well and we are pleased to have them on the team. The new Palliative Care Service Guide role has proven extremely successful, and Dr Peta McVey has been able to assist many of our members and members of the public with their questions and concerns. We are extremely pleased to be able to provide our members and the wider community with an added layer of support and assistance through this role, and we are ready to receive many more calls and queries in the future!

We were delighted to be able to celebrate National Palliative Care

Week in person with our members in May. PCNSW street banners were hung in the Sydney CBD in support of NPCW, highlighting the People at the Heart of Palliative Care in line with the week’s theme. I attended the national launch of NPCW in Canberra with Felicity Burns, which was hosted by Palliative Care Australia. PCNSW held a screening of Live the Life You Please as the NSW launch of NPCW, and we held our annual Education Day at the Waterfront Function Centre in Sans Souci. It was lovely to be able to connect with our members at these events, and provide the opportunity to explore the Education Day topics in depth with other healthcare workers. We look forward to seeing you at the next one!

During 2023 we have also been conducting a scoping study on Homelessness and Palliative Care in Regional, Rural and Remote NSW. We would like to thank all the healthcare workers who participated in interviews for the study. The information you provided us with is invaluable, and we appreciate the time you dedicated to providing us with your experiences. We were also pleased to hear from healthcare workers in a range of different LHDs, as we feel it is important to represent the different perspectives from each location. The study is expected to be published in July, and you can read more about it in this edition of Pallium.

It is important to note the current discussion on the introduction of the Voluntary Assisted Dying Bill in NSW, which will come into effect on 28th November 2023. We know that there will be a lot of changes resulting from the Bill, and we hear your thoughts and concerns on the

An honour and a privilege

“We encourage our members to continue contacting us with your thoughts and concerns so we can represent your needs accordingly.”

matter. Please know that we will continue working to support our members during these significant times of change, and advocating for you as best as we can. We encourage our members to continue contacting us with your thoughts and concerns so we can represent your needs accordingly.

I am very sad to say that this will be my last word as CEO for PCNSW’s Pallium. What a terrific journey this has been with you over these past 19 years at PCNSW. It has been an honour and a privilege to work at PCNSW for so many years, alongside an exceptional team and dedicated Management Committee. I am exceptionally proud of what we have accomplished with our members, and I am confident that the strategic vision of PCNSW will continue to progress far into the future. I am excited to be taking on the role of CEO in ACT, and I wish PCNSW and its members all the best.

Linda Hansen PCNSW Chief Executive Officer

“I am exceptionally proud of what we have accomplished with our members, and I am confident that the strategic vision of PCNSW will continue to progress far into the future.”

NPCW 2023: Launch event

What a fantastic evening held at Palace Cinema on Tuesday 23 May. A delighted group of attendees came to our launch event where they had the opportunity to share a drink while networking and watching the film Live the Life You Please, a story about embracing every moment and living the life you please until the very end

The Live the Life You Please film boasts a treasure trove of incredible stories captured all around Australia, from cities and regional centres to remote communities.

During the film, attendees smiled, laughed and occasionally shed a tear. The stories portrayed a diverse range of Australians experiencing their last chapter. Their powerful stories illustrated how palliative care improves quality of life by providing physical, social, emotional, and spiritual support to patients and their loved ones.

It was a celebration of the people behind the scenes, of the People at the heart of Palliative Care. Thank you to all that attended, it was nice to connect with all of you once more!

Left: Group of attendees. Above: The Palliative Care NSW team.

Left: Ready for the film. Below left: Calvary Kogarah team. Below right: Kylie Clarke and Sarah Potter.

Above left: Linda Hansen and Nick Roberts.

Above right: (L-R) Peta McVey, Therese Smeal, Margaret Rice and Felicity Burns.

Left: Felicity Burns.

Professional Education Day

On Friday 26 May we held our Professional Education Day 2023 at The Waterfront Function Centre, Sans Souci.

It was a successful event where attendees had the opportunity to engaged with different topics of interest within the Palliative Care sector.

Among the presenters we had Dr Linda Sheahan talking about Voluntary Assisted Dying in NSW.

We also had Dr Toni Lindsay talking about what it means to show up well in the workplace: Managing the impacts of burnout, compassion fatigue and humanness in the face of tough things.

Mary Ashton delighted us with a mediation session with a very personal touch in which all attendees reflected creatively about their contribution to their work in Palliative care – A Look Inside.

Left: Dr Linda Sheahan. Middle: Dr Toni Lindsay. Right: Group meditation session.

Then Sandra Sullivan spoke to us about Clinical Supervision: The Benefits and the Barriers for Nurses working in Palliative Care.

And at the end of the day, Irene Calaizis ran a fabulous Art Therapy session in which attendees, using painting and working in teams, collectively created a piece of art in which they reflected their perspective of what palliative care is for them and all that this beautiful field involves.

EDUCATION DAY 2023 IN PICTURES

PROFESSIONAL EDUCATION DAY 2023

Top left: Sandra Sullivan. Left: Irene Calaizis. Above: Collaborative artworks created the art therapy session.

Members tell their stories

During National Palliative Care Week our members did a fantastic job raising awareness about their work, and the importance of Palliative Care.

The Supportive and Palliative Care Consult Team at Nepean Hospital provided education and awareness, they gave away the pens, biscuits, the daisy seeds and started a lot of conversations about advance care planning and supportive care. Thanks Trish Dalgleish (CNC2) for the info and photos!

Greenwich Hospital had an afternoon tea in their cafeteria to celebrate Palliative Care Week.

They also had a Transitional Nurse Practitioner, a registrar to do a speech as well as there were two patients sharing their thoughts during the stay in palliative care unit.

Thanks Yun for the info and the photos!

South Western Sydney Local Health District held several film screening across their sites, including Fairfield Hospital and Liverpool Hospital. Their Liverpool Hospital screening saw roughly 25 staff from all different specialties joining in the festivities, sharing popcorn, cakes and other nibbles while watching the film.

Liverpool Hospital also held a morning tea on their palliative care ward balcony where staff invited families, carers, patients, and staff to join them in sharing the #MattersOfLifeAndDeath.

Everyone was encouraged to paint their own butterfly and write their end-of-life wish. These butterflies were being displayed on the balcony ward and in the rooms of their patients to keep encouraging these meaningful conversations. Thanks to Maxine for the info and the photos!

Bankstown Community Health Centre held an afternoon tea for Palliative Care Week. They extended the week through the month of May for education and awareness sessions, and then finished off on a celebratory note! Thanks to Sandra for the info and the photos!

As part of the National Volunteer Week celebrations, the Fairfield City Council and the local MP for Werriwee asked for nominations to acknowledge volunteers from their community.

Rajani Nayak and I were invited to attend a morning tea held at Anne Stanley (local MP for Werriwee) electorate office, on Wednesday 17 May. All nominees received an award for their efforts in building a stronger local community

Anne Stanley said, “Werriwa relies heavily on the contribution of volunteers – the unsung heroes who give up their free time to deliver services, in the areas of sport, emergency services and community welfare.”

Fairfield City Council sent a certificate of appreciation to Susie Thomas. Both volunteers were very touched. They have stayed on board with the program all throughout COVID-19 and continuing.

Far left: Rajani Nayak receiving the Werriwa Volunteer Award. Left: Susie Thomas, recipient of the Fairfield City Council Appreciation Award.

Harbison Care hosted a volunteers afternoon tea and Southern Highland Community Hospice Palliative Care Volunteers were invited. A lovely afternoon was had at both Moss Vale and Burradoo sites. Residents joined in the celebration.

The board of Southern Highlands Community Hospice hosted a volunteer celebration for the Pal Care, Biography, and Retail volunteers. A great turn out and networking for volunteers.

A good number of Southern Highland Palliative Care volunteers turned out to view the Live Life as you please movie during National Palliative Care Week. A must see for everyone!

The Children’s Hospital at Westmead (CHW) held our annual cake fundraiser during Palliative Care week in the foyer of CHW. As our volunteers usually help out in patient homes rather than the hospital, this is a nice occasion where volunteers get to work alongside our team members (and vice versa).

It was an ‘everyone pitch in’ event so in the photo below there are three volunteers Helen, Eileen and Maryanne and three staff members, Tanya, Sarah and Annette.

The cakes were amazing and were hand made by the Golden West branch of the Cake Decorators Guild.

It is always a very busy and popular stall as everyone agonises over which design of cupcake/s to buy. It was also an opportunity for CHW to promote Palliative Care NSW – who they are and what they do – with both staff and the public.

Nepean/Hawkesbury Service had a stall in Nepean Hospital to raise awareness about Palliative Care Week and recognize the significance of palliative care in enhancing lives.

“It’s always a great day and we love having our volunteers to help us – it is like a family working bee“

Sarah Potter, Volunteer Co-ordinator , Dept of Palliative Care (SCHN)

(L-R): Palliative Care Volunteer Jenny White with Palliative Care Nurse Pat.

Under the theme Matters of Life and Death this year’s NPCW aimed to shed light on the invaluable impact of palliative care on a person’s quality of life. Furthermore, it strives to normalise conversations about crucial topics such as death and dying, fostering open dialogue within the community.

As part of this year’s NPCW, several members of the Chris O’Brien Lifehouse esteemed Palliative Specialist Team participated in a thought-provoking panel discussion. This engaging conversation followed the screening of a new feature documentary film that delves into the realities of living and dying in Australia.

During a morning tea held by Illawara Shoalhaven Local Health District , the Palliative Care community had the opportunity to connect and listen to speakers within the community.

Speakers from Community Palliative Care team included a doctor, physiotherapist, Grief Counsellors, and Social Workers. Each presentation gave insight into their work and how this is linked to other government, private and NGO services. Presentations were followed by “You can’t ask that”, where a panel of health professionals fielded questions from attendees.

The volunteers are new recruits to the service, they are trained in Palliative Care and Bereavement.

(L-R): CNS Lucy McLeod, Dr Yanni Loh (Staff Specialist), Dr Josh Sandy (Pall Care Advanced Trainee), Dr Kasia Chmiel (HoD Pall Care), Jane Adams (Senior Pall Care Social Worker), CNS Alpha Bk, Dr Sarah Bishop Browne (Staff Specialist). Missing from photo: Dr Anushka Thevamanoharan (Pall Care AT) and A/Prof Judith Lacey (HoD Supportive and Integrative Oncology) and CNS Grace Kennedy, Maria Sabogal Nova (Pat Nav).

Each year Bear Cottage Children’s Hospice hold a special Volunteer Thank You evening so that staff have the opportunity to thank our volunteers for their tireless support, acknowledge their service and tenure and recognise the significant contribution they make.

Bear Cottage currently have 130 volunteers who consist of in house volunteers who are onsite seven days a week, volunteers who assist with extra support programs and also a group of biography writers.

“Our amazing team of dedicated ‘vollies’ are a super important part of the Bear Cottage family. They help ensure the day-to-day activities run smoothly and that there are always enough hands on deck to do all the extra jobs around the house. It is really evident by their smiles and enthusiasm how much they enjoy coming to the Cottage, and we love having them! I particularly appreciate the endless patience, sense of fun and willingness to do whatever is needed on that day.”

Jo Bilous, Bear Cottage, Volunteer Manager

Thank you to all our members and supporters who contributed to the success of National Palliative Care Week

Come together for the premier palliative care conference in the southern hemisphere, with over 800 industry leaders, experts, academics, and practitioners from across Australia and beyond.

We want you to be part of this outstanding event. Whether you are a sponsor, exhibitor, presenter, or delegate, there’s something for you at 23OPCC.

Updated program and scholarship applications are out now!

See the latest updates: oceanicpallcare.com

Dr Peta Mcvey – Pride of Workmanship Award

The Rotary Club of Epping celebrated their Pride of Workmanship Awards on Monday 5 June 2023. The ‘Pride of Workmanship’ was designed to encourage more pride by Australians in their vocations.

A Pride of Workmanship Award is presented annually to people who have been nominated by their employer or colleagues for providing outstanding service. It is an acknowledgement of the individual achievement of those who are deserving of recognition for their sense of responsibility to do a job consistently well.

The focus of this year’s awards were themed around individuals from the arena of education.

There were six worthy recipients of the Rotary Club of Epping Pride of Workmanship Awards.

Dr Peta McVey was a recipient of this award for her application of scholarship and knowledge to innovative education in her previous palliative care University academic role and in her current role at Palliative Care NSW where she continues to incorporate education to carers, families and a range of health professionals.

Palliative Care NSW looks forward to fostering and developing future collaborations with Rotary.

HammondCare launches Last Days program to boost understanding about death and dying

As a sector, we are only too aware of the need to improve literacy around death, dying and palliative care. Recognising a clear need to support families and friends of people at endof-life, and after a successful pilot in 2021, HammondCare has launched the Last Days program to equip them with knowledge and tools to navigate at this time.

Last Days provides practical and effective education to improve knowledge and confidence for those caring for someone in their last days, weeks, or months of life. The workshops enable early communication and decision making about end-of-life preferences and prepare families and carers about what to expect during the dying process from a physical, emotional and symptom management perspective.

The program is led by an experienced palliative care nurse in small group face-to-face or online sessions and includes workshops tailored to people living with dementia. HammondCare hopes the program will provide a place to reflect on and discuss death and dying, breaking down notions that preparing for end of life is technical, private and hidden.

Last Days began as a pilot with Sydney North Primary Health Network in 2021 and participants returned excellent feedback:

100% of people reported increased awareness and understanding about what to expect when someone is dying

· 90% reported increased confidence to have discussions about death, dying and end of life expectations.

Demand for quality palliative care will only increase as an ageing population with complex health needs grows. Last Days is an effective means to strengthen the support offered to families or carers of people facing end-of-life.

To find out how to refer people to the Last Days program, or partner with HammondCare to deliver it to the people in your care or in your community across Australia, please get in touch: lastdays@hammond.com.au .

EVENTS & IMPORTANT DATES

7 August 2023

Aged Care Employee Day

8 August 2023

Dying to Know Day

30 August 2023

National Grief Awareness Day

7 September 2023

Quarterly Meeting: NSW Network of Managers of Palliative Care Volunteer Services

10–16 September 2023

Dementia Awareness Week

14 September 2023

R U OK? Day

13–15 September 2023

2023 Oceanic Palliative Care Conference

14 October 2023

World Hospice and Palliative Care Day

15–21 October 2023

National Carer’s Week

23–24 October 2023

NSW Palliative Care Volunteer Conference 2023

5 November 2023

International Volunteer Managers Day &

5 December 2023

International Volunteer Day

7 December 2023

Quarterly Meeting and Christmas lunch: NSW Network of Managers of Palliative Care Volunteer Services

JOBS IN PALLIATIVE CARE

Equipping you with evidence-based resources

As a health professional, we aim to equip you with evidence-based resources and connect you with networks, to help you better serve the palliative care community.

Remember to check out the latest resources for health professionals through the Palliative Care NSW website.

HOMELESSNESS & PALLIATIVE CARE

A scoping study in regional, rural and remote NSW

By Emma Scott-Stevenson

Palliative Care NSW is completing a scoping study on Homelessness and Palliative Care in Regional, Rural and Remote areas of NSW. The aim of this study is to examine the availability and accessibility of Palliative Care services for individuals facing homelessness in these regions. This study follows the findings of PCNSW’s 2022 scoping study on Homelessness and Palliative Care in Metropolitan Sydney, conducted as part of Palliative Care Australia’s National Project. Prior to these studies, little was known about the services and policies which support homeless individuals who require Palliative Care across NSW.

PCNSW interviewed health workers from Regional, Rural and Remote Local Health Districts in NSW to better understand their experiences with Palliative Care patients facing homelessness. Chamberlain and Mackenzie’s cultural definition of homelessness was used in the study, which includes:

· Primary homelessness is experienced by people without conventional accommodation, for example sleeping rough or in improvised dwellings. Secondary homelessness is experienced by people who frequently move from one temporary shelter to another, for example emergency accommodation, youth refuges, ‘couch surfing’ or temporarily staying at the homes of friends, families or others.

Tertiary homelessness is experienced by people staying in accommodation that falls below minimum community standards, for example boarding housing and caravan parks.

Homelessness is a significant issue across NSW, and secondary and tertiary homelessness is especially prevalent in many Regional, Rural and Remote areas. These forms of homelessness are often referred to as ‘hidden homelessness’, as they are less visible than primary homelessness and can be harder to identify. The participants of the study described barriers they’ve faced while providing Palliative Care to homeless patients, and described changes they believe could improve the delivery and receival of Palliative Care services in Regional, Rural and Remote areas of NSW.

Some of the topics that will be explored in the study include:

The factors influencing homelessness in Regional, Rural and Remote areas of NSW, including natural disasters, COVID-19, rising costs of living and the limited number of properties available for rent or purchase at accessible prices.

· The availability and accessibility of Palliative Care services for homeless individuals in Regional, Rural and Remote areas of NSW.

The difficulties faced by health workers when trying to provide homeless patients with care.

The difficulties associated with patients maintaining their living arrangements after receiving a palliative care diagnosis and while living with a life-limiting illness.

· The barriers that can occur as a result of patients residing in rental, temporary or emergency accommodation while living with a life-limiting illness.

Ensuring the safety of community nurses and patients while providing and accessing care in varying environments. Meeting the psychosocial and cultural needs of patients living with a life-limiting illness while facing homelessness.

This study on Regional, Rural and Remote NSW is expected to be published in July 2023. You can access the first study on Metropolitan Sydney here

Homelessness is a significant issue across NSW, and secondary and tertiary homelessness is especially prevalent in many regional, rural and remote areas.

Staff perspectives on end-oflife care for people living with dementia in residential aged care homes: findings from a qualitative study

In Australia, more than 50% of people living in residential aged care homes (care homes) have a dementia diagnosis1. Dementia is the leading cause of death for women in Australia, and second leading cause for men1. It is well established that people living with dementia can benefit from palliative approaches to care, especially those nearing endof-life in care homes2, 3. However, the Royal Commission into Aged Care Quality and Safety has highlighted the significant variation in practice and availability of palliative care within care homes across Australia4 Integrating specialist palliative care capabilities into care homes is one approach to address the end-oflife needs of residents living with dementia5. Yet not all people with dementia in care homes will require

specialist palliative care, and the generalist aged care workforce is well placed to provide most of this care with adequate training and support systems in place6

Previous research suggests clustered domestic residential care homes in Australia result in fewer hospitalisations and better quality of life for residents living with dementia7. However, a gap remains in the literature on the effect of domestic models of care for residents living with dementia and palliative care needs. Furthermore, little is known about the perspectives of managerial and frontline staff providing end-of-life care to residents living with dementia care homes1, 8

Our recently published study aims to describe staff perspectives on providing quality end-of-life care for people living with dementia in care homes and their families. We conducted focus groups and interviews with 56 participants across 14 care homes in two states. The participants included care workers, nurses, care home managers, volunteers and pastoral care coordinators who care for residents living with dementia.

Participants reported a commitment to providing person-centred palliative and end-of-life care for people living

Our recently published study aims to describe staff perspectives on providing quality end-of-life care for people living with dementia in care homes and their families.

Madeleine Juhrmann

PhD Candidate and Research Assistant.

The Palliative Centre, HammondCare

with dementia, recognising the intrinsic value of each resident, regardless of their deteriorating state. Staff emphasised the importance of knowing the resident’s preferences, tailoring care approaches to individual needs, and involving family members in decision-making processes.

The study also highlights the need for enhanced support and education for staff members. Recommendations include specialised training on dementia specific palliative and end-of-life care, staff peer support programs and fostering a supportive work environment.

Frontline and managerial staff consider advance care planning, collectively working as part of a multidisciplinary team and engaging families as other key priorities to providing high quality care in care homes. Participants recommended harnessing the interpersonal skills of care workers, volunteers, and pastoral care workers with the clinical expertise of nurses and general practitioners to provide an optimal integrated approach to end-of-life care.

The study findings also suggest providing families with information and emotional support, proactive approaches to advance care planning, and timely engagement to ensure person-centred care at the end of life.

To build on the findings of this study, the paper provides a table of strategies to improve family education and participation, advance care planning, staff experience and education, and clinical approaches to care.

In support of some of the suggested strategies, the Advance Project Dementia is a new initiative that makes introducing end-of-life conversations and assessing palliative care needs of people living with dementia easier. The project provides practical, evidence-based resources and training that empower aged and primary care professionals to initiate advance care planning and palliative care.

The study’s findings can help inform policy and practice in aged care homes and promote more person-centred care that is responsive to the needs and wishes of residents and their families.

We thank the residential aged care staff for devoting their time, experiences, emotions, and thoughts to this study.

Ethical Approval

The studies involving human participants were reviewed and approved by the University of Sydney Human Research Ethics Committee (2018/744).

References

1. Australian Institute of Health and Welfare. Dementia snapshot. Canberra: AIHW (2021).

2. Handley M, Parker D, Bunn F, Goodman C. A qualitative comparison of care home staff and palliative care specialists’ experiences of providing end of life care to people living and dying with dementia in care homes in two countries: a focus group study. Palliative Medicine. (2021) 36:114–23. doi: 10.1177/02692163211043374

3. Chu C-P, Huang C-Y, Kuo C-J, Chen YY, Chen CT, Yang TW, et al. Palliative care for nursing home patients with dementia: service evaluation and risk factors of mortality. BMC Palliative Care. (2020) 19:122–2. doi: 10.1186/s12904-020-00627-9

4. Pagone G, Briggs L. Royal Commission into aged care quality and safety final report: care, Dignity and Respect. Canberra: Commonwealth Government of Australia (2021).

5. Luckett T, Phillips J, Agar M, Virdun C, Green A, Davidson PM. Elements of effective palliative care models: a rapid review. BMC Health Services Research. (2014) 14:136–6. doi: 10.1186/1472-6963-14-136

6. Parker D, Lewis J, Goury K. Palliative care and dementia. Dementia Australia. (2017).

7. Dyer SM, Liu E, Gnanamanickam ES, Milte R, Easton T, Harrison SL, et al. Clustered domestic residential aged care in Australia: fewer hospitalisations and better quality of life. Medical Journal of Australia. (2018) 208:433–8. doi: 10.5694/mja17.00861

8. Borbasi JAL, Tong A, Ritchie A, Poulos CJ, Clayton JM. “A good death but there was all this tension around”–perspectives of residential managers on the experience of delivering end of life care for people living with dementia. BMC Geriatrics. (2021) 21:306–6. doi: 10.1186/s12877-021-02241-7

The study’s findings can help inform policy and practice in aged care homes and promote more person-centred care

Volunteer Support Services Programme

Things are looking up for palliative care volunteering.

It’s been a tough time through COVID with many volunteer services unable to operate or operating with reduced capacity. Now there is light at the end of the tunnel. Most services are back in operation and ready to accept referrals. Volunteer Managers are now facing the challenge of recruiting new volunteers to fill the gaps in capacity and dedicating time to onboarding and training.

Kate Bowman

“We saw a great outpouring of appreciation for volunteers from service teams back in May during National Volunteer Week. It’s always a busy time with National Volunteer Week falling the week before National Palliative Care Week. To help showcase volunteering we asked Volunteer Managers to select some volunteers willing to share their perspectives. Volunteer Managers and palliative care teams also jumped on board to let volunteers know how much they are valued by sending in some videos of appreciation for us to share via our VolunteerHub website. Watch the appreciation videos here.

Recently, we said goodbye to one of longest serving Volunteer Managers, Karen Rudge. Karen had been looking after volunteers around Taree for fifteen years. Such dedication! We wish her all the best.

With her departure we have a new a new Volunteer Manager to welcome to our network in Taree, as well as new managers in Grafton, Maitland, and Goulburn. The brand new Adolescent and Young Adult Hospice in Manly also includes a volunteer service.

Inclusivity, diversity, and culturally inclusive care are always ideals to strive for in service provision. With this in mind, we partnered with presenters from the Multicultural Communities Council of the Illawarra and Partners in Culturally Appropriate Care (PICAC) to provide volunteers, volunteer managers, and clinicians the opportunity for professional development. We hosted two education sessions on Culturally Inclusive Care. One in Warilla with the help of Volunteer Managers from the Illawarra and Shoalhaven Palliative Care Volunteer Services in March and another in June in Sydney.

In May we head out to the beautiful but cold Parkes in central western NSW for The Cost of Caring seminar. The day provided an opportunity to reflect on the important work volunteers and health professionals do, and explored the challenges that lead to compassion fatigue and vicarious trauma, and how to strengthen and grow.

Talking with your volunteers, making sure they feel heard, and otherwise reflecting on experiences is a huge part of the role of a manager of volunteers. In June, Volunteer Managers all over NSW were given the opportunity to join our online workshop covering Debriefing Essentials.

We have been planning hard for the 2023 Palliative Care Volunteer Conference and think we have a great lineup of presenters and topics on offer. This year the theme is The Power of Perspective and we are so excited to bring volunteers together for a conference for the first time since 2019. With so many recent recruits in services it will be a great opportunity for volunteers to meet their peers and share their experiences.

We are excited to have Teresa Plane, NSW Senior of the Year, as a plenary speaker. Other presentations and workshops will cover Voluntary Assisted Dying, supporting people with cognitive decline, and through grief and bereavement, self-care, and more. The conference will be held on 23rd and 24th October in Narrabeen and we hope you will come along and support your volunteer team to come. Registrations will open in July so stay tuned for more information. See you there!

Volunteer Managers are now facing the challenge of recruiting new volunteers to fill the gaps in capacity and dedicating time to onboarding and training.

Volunteer Perspectives

We would like to bring you Palliative Care volunteer perspectives around their job and all the amazing work they do. In this instance, Mel Jones from the Palliative Care Central Coast LHD Team shares her perspectives.

What do you think is the most important part of your role?

My original reason for becoming a volunteer began over 10 years ago when my Lions Club pledged to achieve a Palliative Unit on the Central Coast. Over two years ago our dream became a reality and now we are working towards a 2nd unit at Wyong Hospital by 2024. My passion to work and support the patients and families at this very special time was exactly where my journey began to become a volunteer in this ward. We are there to assist and support both the patients and the Nurses equally.

I don’t do it for glory, I do it because there is always a need.

What has surprised you most about your role as a volunteer?

As I began my role, I was aware that this may become very challenging and distressing to me, but it has not been like this at all.

We have the time to sit with the patients, listen to their stories of their life, and just sit beside them if that’s what they need. We are there to fill the gap that the nurses do not have the time to do.

Tell us about your most memorable moment as a volunteer.

There have been many special moments that will stay with me forever. To be part of this special part of our patient’s life is indeed a great honour and privilege. One of my most

memorable moments was with a special elderly gentleman who was near the end of his journey. He was bedridden and unable to speak, and I was able to wheel his bed onto our beautiful veranda with views of our lovely bush. As I took him outside his face lit up with joy to be out in the fresh air and sunshine once again. I remained with him till his family arrived and intended to leave them, but they insisted that I stay and hear his story of how he was a passionate Gardener and loved the Australian Bush. It was an Honour to be with him at this memorable end to his Life.

What is the one thing you would tell someone who is considering becoming a volunteer?

You need compassion, and an open mind. You need two ears to listen, two eyes to look at the patent as a person, two hands to touch and hold their hands, if that is what they need, a touch means the world to someone who no longer can speak.

Treat the patient as you would wish you and your family to be treated, with respect, love and compassion.

What is your secret Talent?

Walking their pets, delivering lemonade ice blocks, and bring a smile to their faces. This is the highlight of my day.

PALLIATIVE CARE EDUCATION & TRAINING COLLABORATIVE

Funded by the Australian Government Department of Health

The Program of Experience in the Palliative Approach (PEPA) is a Commonwealth funded project. PEPA aims to improve health professionals knowledge, skills and confidence in providing palliative care for people with chronic and lifelimiting illness by providing funded short observational placements and education sessions in conjunction with local Specialist Palliative Providers.

Both standard and reverse placement are available. Reverse placements, where the specialist palliative care nurse goes to the workplace and spends 2 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.

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.

Have you seen the IPEPA Animated Video Series yet? There are five short films around palliative care and they explore different aspects of what happens when we are diagnosed with a life-limiting illness.

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

Palliative Care Outcomes Collaboration

My oh my how time flies! We are almost halfway into the year and PCOC have been busy over the past few months supporting NSW palliative care services through our virtual education program and continuous quality improvement initiatives.

Clinician’s corner: Unstable phase

This month, in clinician’s corner we are focusing all about the unstable phase. The unstable phase type, by nature of its definition, alerts clinical staff to the need for urgent changes to the patient’s plan of care or that emergency intervention is required. Those patients assessed to be in the unstable phase require intense review for a short period of time. It is usually characterised by severe Symptom Assessment Scale (SAS) Scores (i.e SAS = 8,9 or 10) or severe Palliative Care Problem Severity Scores (PCPSS) (i.e. PCPSS = 3).

Start of unstable phase

An unstable phase is triggered if a:

• patient experiences a new, unanticipated problem, and/or

• patient experiences a rapid increase in the severity of an existing problem, and/or

• patient’s family/carers experience a sudden change in circumstances that adversely impacts the patient’s care.

End of unstable phase

The patient moves out of the unstable phase in one of two ways:

• A new plan of care has been put in place, has been reviewed and does not require any additional changes. This does not necessarily mean that the symptom or

crisis has been fully resolved. However, the clinical team will have a clear diagnosis and a plan for the patient’s care. In this situation, the patient will move to either the stable or deteriorating phase.

• The patient is likely to die within a matter of days. In this situation, the patient will be moved into the terminal phase.

Some questions to consider when changing an Unstable phase:

• Is there evidence of symptom improvement reflected in the patientreported SAS or PCPSS Pain score?

• Has the new plan of care been reviewed within 24 hours?

• Has this care plan addressed the issue?

Characteristics of the assessment of and response to an unstable phase:

• Problem/symptom distress requires immediate action

• Plan of care is ineffective

• Urgent intervention, referral and escalation required

• Change of care plan indicated

• Review within 24 hours.

Learn more about the Palliative Care Phase by viewing the PCOC Education - Palliative Care Phase video on YouTube.

PCOC workshops for all disciplines working in Palliative Care

PCOC’s virtual workshops will be running in June and August 2023. These workshops cater to all members of the multidisciplinary team, all clinical settings, and for the various stages of implementing and using PCOC.

Fundamentals webinar

14th June & 8th August

PCOC fundamentals webinar is a 1.5-hour program designed to enhance knowledge of the PCOC tools and PCOC assessment and response framework for newly registered services and clinicians.

Assessment and Response workshop

21st June & 22nd August

This workshop is a two-hour interactive program to support senior clinicians and clinical leads/ PCOC Champions in educating their teams and embedding the PCOC assessment and response framework effectively as part of routine care.

Advanced workshop: Using PCOC reports

28th June & 29th August

This workshop designed to increase understanding and skills in using PCOC Patient Outcome reports and supplementary information to drive quality improvement and service development.

You must be receiving a PCOC report to attend this workshop.

Registration & information

We want to make sure gain the most from our workshops so please contact lkable@uow.edu.au if you would like further information to register for the correct one to meet your education needs.

Registration and further information for these workshops is available via the PCOC Education page.

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.

If you are interested in participating in an individualised PCOC quality improvement planning session, please contact me at lkable@uow.edu.au

These sessions aim to support services in interpreting PCOC reports and providing support to identify and progress QI activities.

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. The Statewide Service Desk is the first point of call for all eMR related questions. If you have started using eMR in the past 12 months, please contact me so that we can organise a data check to ensure the clinical information you are recording is being accurately reflected in the new eMR module.

Connecting Australians to palliative care information and support

The CareSearch and palliAGED websites and related activities will be continuing in the 2023–2026 period. As announced by Minster Butler, Flinders University is one of the 14 National Palliative Care Projects that has been funded. Flinders will continue to deliver CareSearch including palliAGED in this period.

Some people may not be aware but palliAGED is managed and delivered by the CareSearch team which is part of the Research Centre for Palliative Care, Death and Dying (RePaDD). This enables us to connect research, education, and practice across our projects and our partnerships.

We will be working hard in the next period to ensure that as many health professionals and health services and aged care staff and services are aware of our resources and use them to improve care in the people’s homes, in community and primary care settings, in aged care and in hospitals. This reflects a direction we have been starting to introduce in the last few months with new targeted content and actionable resources. These include:

The CareSearch Project is funded by the Australian Government Department of Health.

palliAGED: Aged Care Journeys in palliative care

To help careworkers in aged care learn about palliative care and what to do, we have combined common patient/client journeys and the palliAGED Tip Sheets. There are four common journeys that careworkers can read and link through to palliAGED resources to build their knowledge and confidence. We have also provided links to some background information for educators who might like to use the journey maps for in-house training.

palliAGED: InFocus on Bereavement

Grief and loss associated with deterioration and death for people using aged care services is an important issue for the sector. The InFocus brings together not only evidence around bereavement and aged care but helps connects families, aged care workers and services with resources that can support them. Sometimes knowing where to find things is the hardest part and this provides a snapshot of resources and ideas.

CareSearch: Setting up for at home palliative care

We have also put together a page that talks about what you might needed in terms of equipment or changes in your home to care for someone at home. It provides an overview of things to think about with the care team and links on where to find resources and information.

CareSearch print resources

We have already made available digital packs of materials that are configured for downloading or immediate local printing. However, we recognise that in some situations, print resources are needed. There is a limited range of printed resource packs that can be ordered. They include packs for the community and for consumers as well as evidence and translation packs and packs for acute care, primary care, and nurses.

Share your comments and suggestions by emailing caresearch@flinders.edu.au or palliaged@flinders.edu.au

We welcome feedback and ideas on what can help individuals and families and what is useful to those providing care in primary care, hospitals, the community and aged care.

Celebrating

the remarkable achievements of an extraordinary CEO

As you will know if you have seen recent emails, Linda Hansen PCNSW CEO has “left the building” to take up the position of CEO Palliative Care ACT.

We are excited to share with you all the exceptional accomplishments of Linda, an extraordinary individual who has dedicated nearly two decades of her life to serving and leading Palliative Care NSW. Throughout her career, Linda has demonstrated unwavering commitment, exceptional leadership, and an unwavering passion for making a positive impact within the palliative care sector of NSW.

Linda’s journey began nearly two decades ago when she took on the role of CEO at Palliative Care NSW. From the outset, her strategic vision helped to transform the organisation into the leading voice for Palliative Care professionals in NSW. Under her astute guidance PCNSW has flourished, expanding its reach and multiplying its impact year after year. Linda has worked tirelessly alongside politicians, policy makers and stakeholders across NSW to prioritise Palliative Care. Linda developed strong links with regional, rural and remote service providers and colleagues. She has supported the needs of palliative care clinicians across the state and has passionately advocated for equitable access to palliative care for NSW residents when required, regardless of postcode or preferred location of care.

One remarkable aspect of Linda’s leadership is her ability to inspire and empower others. Through her visionary approach Linda has fostered a culture of collaboration, innovation, and inclusivity within the PCNSW team, encouraging every staff member to contribute their unique talents and perspectives. Linda’s belief in the power of teamwork has propelled PCNSW to new heights, creating a strong and cohesive team that consistently delivers exceptional results. When Linda first joined PCNSW she was the only staff member – now nearly 20 years later we have a busy office of six people.

Linda has demonstrated a profound commitment to advancing PCNSW’s vision, that all people with a life limiting illness and those approaching and reaching end of life, and their families, have access to quality palliative care and end of life care. Linda’s tireless efforts in securing funding, forging strategic partnerships, and raising awareness have transformed PCNSW into a leader for palliative care across NSW and Australia.

Beyond the organisation itself, Linda has played a pivotal role in advocating for policy changes and championing causes close to her heart. Throughout the at times emotive and heated VAD debates in 2016 and again in 2021, Linda steadfastly represented the importance of providing high quality palliative care and end of life care. Through this passionate advocacy work, Linda has become a respected voice in the sector, representing members views and concerns to the media, in parliament and more quietly behind the scenes.

In addition to her professional achievements, Linda is renowned for her ability to hold a tune, her sense of humour, unwavering integrity, humility, and empathy. Linda prioritises the well-being of all those she works with, ensuring a nurturing environment where individual feel valued and empowered. Her mentorship and guidance have inspired emerging leaders across the sector, creating the next generation of changemakers.

As we honour Linda’s achievements at PCNSW, we also acknowledge the transformative programs and events she has created and developed, such as the Volunteer Support Service Program, memorable and inspirational Biennial Conferences, annual NPCW launches and Education Days just to mention a few. Linda’s tireless dedication and unwavering commitment to the palliative care sector serves as an inspiration to all of us who strive to make a positive difference in the world.

In conclusion, Linda’s remarkable journey as CEO of Palliative Care NSW is a testament to her unparalleled leadership, unwavering commitment, and profound impact on this sector. We wish Linda all the best as she takes these attributes to Palliative Care ACT, and thank her from the bottom of our hearts for all that she has achieved over the years.

Farewell,Linda

Linda’s remarkable journey as CEO of Palliative Care NSW is a testament to her unparalleled leadership, unwavering commitment, and profound impact on this sector.