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.
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.
EAPC members can access a FREE copy from the EAPC website here.
References
- 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.
- 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.
- 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.
- 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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