Death education to navigate life’s final chapter: insights for palliative care professionals

Talking with people with life-limiting illnesses and their relatives about what to expect while dying can be helpful, yet despite the concept of death education being around for many years, there is still more work to be done to identify potentially effective interventions and areas for further research. For April 2024’s Palliative Medicine Editor’s Choice, Tong Wang, Kin Cheung and Huilin Cheng share the findings of their recent scoping review and reflect on what they’ve learnt so far.

Photo credit: Quang Nguyen vinh, Pixabay

As palliative care professionals, are you comfortable with death? You may be familiar with it, but are your patients and their relatives? Do you know any effective and feasible death education interventions that might help them? Patients with advanced diseases and their family caregivers in many countries report significant unmet needs related to death.¹ An advanced cancer patient expressed his death fears “I thought I would die by now, and because of that I gave over hope totally. I was just lying there waiting to die”² and a family caregiver says “No one really ever talks to you about some of the things that you will see as a person dies …” ³ Addressing these concerns requires palliative care professionals to have adequate knowledge and training in death education interventions.

Death education, formally recognised through the ‘movement of death awareness’ since 1960s, has expanded across education, psychology, and medicine, each adapting to specific needs.⁴ Recent decades, particularly after 2010, have seen increased research on death education for people with advanced diseases and their family caregivers, with a big focus on cancer even though other diseases are more common. Existing literature primarily focuses on a few intervention types, such as life review (helping people reflect on their life stories), dignity therapy (enhancing a sense of purpose and self-worth) and meaning-centered psychotherapy (finding meaning amidst illness), evaluating their effectiveness on anxiety, depression, and quality of life.

Our publication in Palliative Medicine reviewed studies on death education interventions in the context of advanced diseases from 2003 to November 2023, marking the broadest scoping review in this journal. Using thirteen electronic databases across healthcare, medicine and social science, along with manual searches of key journals and references, in English and Chinese, our scoping review stands out by including a wide range of quantitative, qualitative, and mixed-methods studies. We broadened the definition of death education to include various educational and psychosocial support activities that help individuals comprehend life and/or death and/or adapt to dying. This comprehensive review extends our scope to cover more intervention types, non-cancer patients, family caregivers, spiritual and death-related outcomes, and factors contributing to intervention practice.

We identified nine intervention types across 47 studies, predominantly for advanced cancer patients. Life review, cognitive-behavioural therapy, narrative therapy (using storytelling to make meaning of one’s life) and general psychosocial intervention (providing emotional and educational support to manage death-related challenges) have shown potential in alleviating depression and anxiety for patients and those close to them. Death-related outcomes were mainly evaluated through Managing Cancer and Living Meaningfully intervention. Qualitative data revealed factors contributing to the interventions’ success, such as encouraging the disclosure of death-related concerns, the importance of having well-trained practitioners in managing death anxiety, and family caregiver involvement.

Our review illuminates the varied landscape of death education interventions within palliative care, highlighting the need for such interventions for all people with a life-limiting illness and family caregivers, guiding future research to tailor interventions to specific goals and outcomes that people might have as they approach the end of their lives.

READ THE FULL ARTICLE IN “PALLIATIVE MEDICINE”!

Death education interventions for people with advanced diseases and/or their family caregivers: A scoping review. Tong Wang, Kin Cheung, and Huilin Cheng, Palliative Medicine, Vol 38 Issue 4, 2024.

References

1. Wang T, Molassiotis A, Chung BP, Tan JY. Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review. BMC palliative care. 2018;17:1-29.
2. Kyota A, Kanda K, Senuma M, Tsukagoshi N, Futawatari T, Kondo Y. The perception of life and death of patients with the end-of-life stage cancer: A systematic review of qualitative research. Eur J Oncol Nurs. 2023;66:1-13.
3. Collins A, McLachlan SA, Philip J. How should we talk about palliative care, death and dying? A qualitative study exploring perspectives from caregivers of people with advanced cancer. Palliat Med. 2018;32(4):861-869.
4. Pine VR. A socio-historical portrait of death education. Death Educ. 1977;1(1):57-84.

Links and resources

• Learn more about this topic by reading Hannelore Wass, A perspective on the current state of death education and Luciana Mascarenhas Fonseca and Ines Testoni, The emergence of thanatology and current practice in death education.
• Find out more about the Association for Death Education and Counselling (ADEC), a professional organisation dedicated to promoting excellence and recognising diversity in death education, bereavement counselling, and care of the dying.

About the authors

Miss Tong Wang (MSC, RN) is a PhD candidate from the School of Nursing at the Hong Kong Polytechnic University. In the field of palliative care, her main study interests are cancer care and psychosocial care. Twitter: @TongWANG1049257 ORCID ID: 0000-0002-3779-7960

Dr Kin Cheung (PhD, RN) is an associate professor from the School of Nursing at the Hong Kong Polytechnic University. She is awarded as a Fellow of the Provisional Hong Kong Academy of Nursing and a member of the Primary Healthcare at the Hong Kong Polytechnic University. ORCID ID: 0000-0002-8419-4847

Dr Huilin Cheng (PhD, RN) is an assistant professor from the School of Nursing at the Hong Kong Polytechnic University. She is also an experienced qualitative nursing researcher and a member of the Interdisciplinary Centre for Qualitative Research and Primary Healthcare at the Hong Kong Polytechnic University. In the field of palliative care, her main study interests are symptom management and supportive care. ORCID ID: 0000-0002-6117-3832

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Advance care planning in dementia: announcing the EAPC task force’s second white paper

Advance care planning is important for everyone to make sure their wishes and values form part of their future care – and this is especially so for people with dementia. Ahead of the first Advance Care Planning Day (held in the United Kingdom on the 8^th May 2024), we are pleased to showcase a new publication from the EAPC’s taskforce on advance care planning in dementia. Jenny T. van der Steen, Ida Korfage and Miharu Nakanishi tell us more.

Photo credit: Centre for Ageing Better

Following the recent EAPC task force publication on defining advance care planning (ACP) in dementia and what it entails, we are pleased to announce that our second white paper has just been published on the 33-country Delphi study which seeks to address policy and research gaps for this topic.

Advance care planning aims to explore, document, and share a person’s preferences about their future care, in preparation for if they are no longer able to communicate their wishes. However, existing ACP definitional frameworks apply to individuals with decision-making capacity (for example, the EAPC white paper on advance care planning published in 2017). In 2014, the EAPC published a white paper on palliative care in dementia which included a domain on advance care planning – and our recent publications continue this important work.

We built upon and expanded the study scope from our previous Delphi studies. The taskforce aimed at conceptualising ACP in dementia in terms of its definition and key elements, and to provide recommendations for practice, policy and research. This resulted in a set of white papers. The first one reported a framework comprising a definition and the elements of capacity, family, and engagement and communication that deserve particular attention in the case of dementia. In our most recent publication, and second of the set of white papers, we report on the recommendations for policy and research. It is based on analyses of the Delphi panel evaluations of the recommendations and identification of gaps by two visiting Professors at Leiden University Medical Center (LUMC), Associate Professor Miharu Nakanishi from Japan, and Prof. Sandra Martins Pereira from Portugal.

Our Delphi study invited a panel of experts in dementia care and ACP research, practice and policy who were invited for an online survey process, aiming to develop consensus. During nine months, four survey rounds with interim analyses and feedback were conducted between 30^th Sept 2021 and 30^th June 2022. This resulted in the recommendations, which cover advance directives regulation, equity of access, dementia inclusive approaches and conversations to express patients’ values. To give a few examples:

• Advance care directives (living wills) need both a structured format to enable easy identification of specific goals and preferences in emergency situations, and an open text format so persons can describe their values, goals, and preferences, and also a description of specific situations when the directive applies.
• Human rights include the right for persons with dementia to decide about care, to appoint a proxy decision maker or to participate in shared decision making as preferred, the right to receive support in decision making, and to prevent undue influence as a principle
• Governments should ensure equity of access to any measures stimulating ACP that target the general public, aiming at equal benefit for persons with dementia and their family of starting conversations outside healthcare settings.
• Governments and healthcare organisations should employ ACP approaches that are targeted and refined enough to ensure optimal value to persons with dementia and their families.

An evidence-based dementia-specific practice model for advance care planning is needed, while health services frameworks should enable a dementia-inclusive practice. We hope that these consensus based recommendations and identification of research and policy gaps in this white paper provide key starting points for discussion across multiple stakeholders including people with dementia and their relatives. We look forward to also publishing our recommendations for use in clinical practice soon.

Top photo: Taskforce members at the EAPC 18th World Congress at Rotterdam, June 2023 left to right: Lieve Van den Block, Jenny T. van der Steen, Miharu Nakanishi, Ida Korfage. Bottom photo: Sandra Martins Pereira and Miharu Nakanishi, Portugal, March 2024.

Links and resources

• Read the most recent white paper! Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care
• Read the 2024 white paper Consensus definition of advance care planning in dementia: A 33-country Delphi study
• Read the EAPC’s 2014 White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations
• Learn more about the work of the EAPC’s taskforce on advance care planning in dementia

The UK’s first advance care planning day will be held on the 8^th May 2024. This day of action and awareness will highlight the importance of advance care planning and encourage people to document, share and discuss their wishes. Visit the advance care planning day website here to find out more, view the ACP resources and share your pledge about the ACP task that you’ll undertake.

About the authors

Ida J. Korfage is an epidemiologist from the Netherlands. Her research and teaching focus on shared decision-making, advance care planning, e-health and quality of life. From 2016-19 she was elected member of the Board of Directors of the International Society of Quality of Life Research (ISOQOL). She previously co-chaired the EAPC Task Force on advance care planning with Judith Rietjens. This resulted in a White Paper defining advance care planning based on an international Delphi study.

Miharu Nakanishi is an Associate Professor of Department of Psychiatric Nursing, Tohoku University Graduate School of Medicine, Japan. She is a registered nurse and researcher on health policy, health services research and implementation in the field of dementia care, palliative care and end-of-life care.

Jenny T. van der Steen, is an epidemiologist from the Netherlands, who previously led the EAPC dementia palliative care Task Force which, in 2014, resulted in a White Paper defining palliative care in dementia based on a Delphi study. In 2009, she was the first to receive the EAPC Young Investigator Award (now called Early Researcher Award). The main funding for her research on end of life in dementia is currently provided by the European Research Council.

Announcing the winner for the EAPC Cicely Saunders Award 2024!

The prestigious EAPC Cicely Saunders Award was established in 2020 and it is given to an individual who has made a significant contribution to palliative care. We are delighted to announce that the winner for 2024 is Xavier Gómez-Batiste, Chair in Palliative Care at the Central University of Catalonia.

I am honoured to be awarded the EAPC Cicely Saunders Award. My personal role in establishing and developing comprehensive palliative care in Catalonia has been one shared with the EAPC for nearly forty years, so it seems fitting to have this chance to reflect on this journey for the EAPC blog. 

Modern palliative care was initiated at St Christopher’s Hospice in 1967 by Cicely Saunders, who created a conceptual framework to identify the multidimensional needs of patients and their families. This included the concept of ‘total pain’, defined as the suffering that encompasses all of a person’s needs and which required a skilled multidisciplinary team to provide support.  Since then, palliative care has evolved in sixty years to a diversity of services in all settings, including public health programs, developing a service which can offer timely palliative care approach to all types of patients in all services, identifying psychosocial (which means emotional, psychological and social needs, including aspects such as loneliness, poverty and exclusion) and spiritual needs as essential, as well as involving local communities, to achieve the challenge of palliative care access as a human right .

I was trained as a Help the Hospices’ fellow in a training journey funded by the Catalan Ministry of Health in 1986-87, and then started a palliative care comprehensive service in the city of Vic, Catalonia, in 1987. In the 1990’s, there was a keen interest in public health and palliative care, and I had the opportunity to design and implement the Catalonia World Health Organisation (WHO) Demonstration Project, which implemented a wide range of resources in the region, focused in care for people with terminal cancer (1).

In the early 2000’s, we knew that palliative care was needed by many different people, in all settings, and that it needed to be offered at an early stage of diagnosis with a life limiting illness. We developed a population-based comprehensive and integrated palliative approach, developing tools and policies to do so, with palliative care education and research, including palliative care as an essential element of the Catalan chronic care program (2). We promoted the idea of universal access to palliative care as a human right, which became part of the World Health Assembly resolution 67.19. We were designated a WHO Collaborating Center and I was privileged to be Medical Officer at WHO headquarters in Geneva to promote and implement this vision.

It was in 2008 that we had the opportunity to design and implement a program for the comprehensive care of people with advanced chronic conditions with La Caixa Foundation. This has enabled 71 teams focused in the psychosocial and spiritual care of these patients and their families in Spain and Portugal, and they have looked after nearly 700,000 people in 15 years (3). This project demonstrated effectiveness in improving the quality of life for both patients and families, particularly those facing social vulnerability, while also contributing valuable experience and evidence regarding the importance and complexity of addressing psychosocial and spiritual dimensions in care. Finally after 2010, the concept of compassionate communities was designed to actively involve the society in the city of Vic, 35 years after starting the first palliative care services there (4).

It has been a privilege to be an active participant of this journey since the 1980’s, learning from pioneers (Cicely Saunders, Eric Wilkes, Vittorio Ventafridda, Jan Stjernsward, Kathleen Foley, Irene Higginson and Allan Kellehear, among others) and to be able to implement these innovations in our context.

Professor Xavier Gómez-Batiste will be giving the Cicely Saunders Award presentation ‘Developing palliative care towards universal coverage: Psychosocial and spiritual care as human rights of persons with advanced chronic conditions’ as part of the opening ceremony at the EAPC’s 13th World Research Congress in Barcelona in May 2024.

References

1. Gómez-Batiste X, Blay C, Martínez-Muñoz M, et al. The Catalonia WHO Demonstration Project of Palliative Care: results at 25 years (1990-2015). J Pain Symptom Manage 2015; 52; 1: 92-99. http://dx.doi.org/10.1016/j.jpainsymman.2015.11.029.
2. Gómez-Batiste X, Lasmarías C, Amblàs J, et al. Chair ICO/UVIC-UCC of palliative care at the University of Vic – Central University of Catalonia: an innovative multidisciplinary model of education, research and knowledge transfer. BMJ Supportive & Palliative Care doi:10.1136/bmjspcare-2018-001656.
3. Gómez-Batiste X, Buisan M,  Gonzalez MP, et al. The “La Caixa” Foundation and WHO Collaborating Center Spanish National Program for Enhancing Psychosocial and Spiritual Palliative Care for Patients with Advanced Diseases, and their Families: Preliminary Findings. Palliative & Supportive Care 2011;9(3):239-249. G7
4. Gomez-Batiste X, Mateu S, Serra Jofre S et al Compassionate communities: design and preliminary results of the experience of Vic (Barcelona, Spain) caring city. Ann Palliat Med 2018 doi: 10.21037/apm.2018.03.10

Links and resources

• Find out more about La Caixa Foundation, offering care for people with advanced illness.
• Learn about palliative care at the Central University of Catalonia.

About the author

Professor Xavier Gómez-Batiste, MD, PhD is full Professor of Palliative Medicine at the Faculty of Medicine at the University of Vic – Central University of Catalonia (UVICUCC). He was trained as medical oncologist and undertook palliative care training in the UK in 1986-87, developing afterwards the first service in Spain, and leading the Catalonia WHO Demonstration Project of palliative care implementation. Xavier was director of the palliative care service at the Catalan Institute of Oncology for 30 years. He was Director of the WHO Collaborating Center for palliative care public health programmes (2008-2021) and Medical Officer of palliative and long term care at the WHO headquarters in Geneva. Since 2008, he has been scientific director of the La Caixa Foundation Comprehensive Program for people with advanced chronic conditions and has been developing tools and policies to insert palliative care and psychosocial spiritual care as elements of the chronic care programs and for it to be considered universally accessible as a human right.

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‘Is it all about the money?’: Comparing public and private hospital palliative care in Portugal.

In 2012, with the publication of the Portuguese Basic Law for Palliative Care, the Portuguese government committed to palliative care and  created the National Palliative Care Network. Pallliative care is provided by the public and private sector in Portugal, and Sara Margarida Rodrigues Gomes, a palliative care nurse, reflects on whether this works well for people receiving palliative care.

Healthcare professionals in Portugal recognise an asymmetry between public and private hospitals, treating different patient populations, which certainly impacts resources to deliver palliative care. This was the root of an Associação Aproximar os Enfermeiros (Bringing Nurses Together) webinar held in December 2023. Reflecting on this topic allows us to become more aware of the reality, leading us to understand the present and prepare for the future.

In Portugal, the first units to provide palliative care in inpatient settings and for communities were in the public sector, around 30 years ago, in the cities of Lisbon, Porto and Fundão. When the National Palliative Care Network was established in 2012, one of its missions was to monitor patient admissions, ensuring equity in access. But the reality is not so simple.

In the last 15 years, we have seen the interest of the private sector in creating answers for patients with incurable and advanced pathologies, whose time is running in the opposite direction. Presenting the quick response when scheduling a first appointment, there are several benefits that professionals, patients, families and society recognise in the private sector. These include reduced waiting time for appointments;  guarantee of bed availability when it is necessary to admit the patient on the same day; facility in hiring staff according to increased demand; flexibility in offering other options of consultation in addition to face-to-face consultations and the guarantee of continuity of care and surveillance at home.  The patient and family can feel greater control over the care provided to them when they choose where they want to be treated and hospital admissions can be reduced, where possible, by having access to wider services so crises could be managed at home.

And yet… public services are almost always the first choice for people needing pallaitive care, especially in the diagnosis identification phase and in moments of crisis. In Portugal, inpatient units, day hospitals and community care is free for palliative care patients, bringing accessible services to those who can’t afford to pay.  Additionally, the commitment of public services to contributing to the training of future professionals and making sure that specialist roles are supported is recognised by people receiving palliative care, families and society. External accreditation provided by quality organisations is being increasingly sought after by the public sector as a guarantee of safety and quality of the care provided.

In recent years I have seen companies marketing their services by attempting to fill in the gaps left by poor information, pretending to encourage the empowerment of society’s patients and improving knowledge about some themes, such as the philosophy of pallative care and places to receive care¹. We all need to agree that this marketing is not understood at the same level and in the same way by those who may need palliative care services². Health literacy (accessing good quality information and understanding it) is vital to make sure people can choose the care they need.

Although the intention was to have equity in palliative care in Portugal, research³ suggests that those with more money, are more likely to have the care that they wish for (whether at the beginning of the treatment of their illness or the end of their life). This is significantly important.

For care to be truly individualised, with a greater focus on what is important to the person, there has to be choice. But why can’t we also achieve this in public services? Are political decision-makers far from reality? Or are we, as health professionals, not highlighting and reporting the gaps in care and difficulties experienced by those trying to navigate between the private and public sectors?

So perhaps the question should be – is it all about money, marketing or health literacy?

References

1) Michael Matthews, Cara Peters & Stephanie Lawson (2017) An exploratory investigation of hospice marketing: How are palliative care providers marketing their services? Health Marketing Quarterly, 34:1, 48-61, DOI: 10.1080/07359683.2016.1275218.

 2) Ribeiro, O., Lima, S., & Duarte, J. (2020). Literacy in health in palliative care. Millenium – Journal of Education, Technologies, and Health, 2(5e), 281–292. https://doi.org/10.29352/mill0205e.30.00321

3) Hipkiss J (2023) How personal health budgets benefit end-of-life patients and their families. Nursing Times [online]; 119: 11.

Links and resources

• Find out more about palliative care In Portugal from the Portugal Portuguese Palliative Care Association and the National Commission of Palliative Care 2023-24.

About the author

Sara Margarida Rodrigues Gomes is a registered nurse, specialising in medical and surgical nursing, with a Masters in palliative care, and she is currently studying for a PhD in nursing. She is a lecturer at the Nursing School of Coimbra (ESEnfC) and she worked at the Portuguese Oncology Institute, in Coimbra, for fifteen years, and the last eight years in the inpatient palliative care unit. Sara is a member of the EAPC’s blog editorial team. ORCID ID: 0000-0003-4599-7345.

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‘Volunteers are our solace’ – palliative care in Kerala.

In the early 1990s, a palliative care movement began in Kerala, in Southern India, with a mission to help people in need of palliative care. Now, almost 60% of the population in Kerala has access to palliative care compared to 2% in India as a whole.  Pratibha Pal from Pallium India tells us how this transformation has been possible.

Pallium India volunteer, caregiver and person receiving care (in the background)

The vehicle carrying the palliative care home care team stops at a distance from the house they must visit. It’s a narrow lane that cannot accommodate the vehicle, so the team, which includes a doctor, nurse, social worker, palliative care assistant, and volunteer, steps out and walks about half a mile, gradually making the upward climb.

They finally reach the patient’s home. Ambu* is a bedridden patient who is paralysed.  Her aged husband relies on the pension the government provides – a paltry sum of INR 1600 once a month (equivalent to €17.79). With soaring living expenses, the money isn’t enough for them to survive the month. A volunteer introduced Ambu to Pallium India, which is a non-government organisation that can help to take care of her health, provide her with required medicines and related support, and provide them with necessities like food that can tide them through the month.

They are not alone. Numerous others live in isolated areas with no motorable roads and no access to potable water. Many of them have no one to accompany them to the nearest Primary Health Centre, which is miles away.

From small villages on the outskirts of Trivandrum to the heart of the city, the Pallium India home care team reaches out to each of them to provide palliative care in many ways. From catheter changes to injections, from removing maggots in their wounds to cutting their nails, from changing the patient’s bedsheets to providing intimate hygiene, from counselling patient and family members to trying to resolve conflicts, these home care team members also provide companionship when required.

Krishnaraj Nambiar, a chartered accountant and senior volunteer at Pallium India, left a lucrative job in the Middle East to dedicate himself to palliative care. Through home visits, he witnessed the harsh realities of patients’ suffering, seeing affluent families pushed into poverty by catastrophic medical expenses (1). Some had to sell or mortgage their property to afford the treatments. Engaged in the cause, he learned valuable lessons from patients’ endurance, humility, and caregivers’ selfless sacrifice, especially those of women.

Aji Kumar, a paraplegic from Kattakkada in Trivandrum and one of the people in Pallium India’s care, says, ‘Volunteers are our solace; they have the patience to interact with us and understand our grief and problems. They ensure that our concerns are addressed and our needs are attended to. We have deep gratitude for the selfless services that they provide.’

The volunteers support the families or beneficiaries by being there when they want to reach out and acting as their voice when needed, from helping them get the monthly supply of groceries provided by Pallium India to arranging any necessary medical services. They step in like a family member when the patient needs to get something done in a bank or, a government office, or a shop.

Volunteers are crucial in identifying those who are either ignored by the health care system or missed by the palliative care teams because they are not aware of them. In recent years, students have also taken up the cause and formed palliative care clubs in their schools, colleges, and neighbourhoods.

Whether it is providing compassionate companionship or addressing a patient’s isolation, the volunteers work to enhance the quality of a patient’s life and ensure that they get dignity in care throughout the palliative care journey. Volunteers are instrumental in bringing the community together, filling the gaps, and ensuring no one is left behind. It is due to our amazing volunteers that over fifteen years we have been able to reach over 25 000 people who have needed palliative care support. We are pleased that our message is spreading across the world – with the compassionate community movement and Kingston Cares Project in Canada. Palliative care may have come far, in India and worldwide, but there is still a long way to go.

*Names have been changed to protect the identity of the patients.

Reference

1 Health spending pushed 55 million Indians into poverty, Times of India article 2018.

Links and resources

• Find out more about Pallium India
• Watch Pallium India from 2003 to 2023 – The Journey So Far
• In Kerala, palliative caregivers are bridging the gap between medicine and humanity News Minute article.
• Read about the Canadian project inspired by Pallium IndiaBringing palliative care home: volunteers drive new Kingston project

About the author

Pratibha Pal is a freelance writer and works as a social media consultant with Pallium India. Twitter/X: @myepica. Follow Pallium India on X: @palliumindia

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