Category Archives: End of life care

End of life care is a diffuse term which tends to be used more in discussion among academic contexts than amongst practitioners or patients and families. Furthermore, definitions and priorities are likely to be affected by culture.

Priorities in Palliative and End-of-Life Care: Public Consultation

The ‘Palliative and End of Life Care Priority Setting Partnership’ has initiated a public consultation on research priorities. Service users, families, carers and health professionals are invited to participate in a brief survey identifying the issues they feel need most attention from research and funders.

The survey can be accessed here:

‘Case stories’ on transnational dying

‘Case Stories’ is an interdisciplinary project on transnational dying. The project aims to better understand the pain of social exclusion, inequality and injustice at the end of life through stories.

Yasmin picThe Case Stories website contains a wealth of information on dying as a migrant, ranging from personal accounts of using palliative care services to artwork and poetry inspired by people’s stories.

The project is the brainchild of Sociologist Yasmin Gunaratnam and supported by a British Academy Fellowship. 

Special Issue of Culture, Medicine and Psychiatry: Cultural Competence in Action

We would like to draw your attention to a special issue of the journal Culture, Medicine and Psychiatry that focuses on the issue of cultural competence in healthcare.

The issue examines how concepts of cultural competence are operationalised in teaching interventions. Of particular interest to our international readership is the inclusion of a case study from Canada and an essay from a German clinical educator, illustrating how cultural competency approaches, which originated in the US, can be adapted to different countries and settings.

Children’s Hospice Week – United Kingdom

To mark Children’s Hospice Week (April 26th-May 3rd), the Duchess of Cambridge has recorded her first video message.

If you would like to know more about Children’s Hospice Week, follow this link.


After Cicely – the stories of five women working in end-of-life care in Asia

The Lien Foundation has commissioned an inspiring short film about five women working in end-of-life care in different Asian countries (Bangladesh, Mongolia, Vietnam, Taiwan and Singapore).

The 2nd International Multidisciplinary Forum on Palliative Care

The 2nd International Multidisciplinary Forum on Palliative Care will be held in Sofia, Bulgaria (Oct 3-6, 2013). The conference is aimed at medical professionals and focuses on education initiatives for non-palliative care specialists.


The Open Society Foundations

For those readers interested in access to palliative care world-wide, we would like to draw attention to the work of the Open Society Foundations.

The Open Society Foundations work to ‘build vibrant and tolerant societies whose governments are accountable and open to the participation of all people’. 

The Health Programme, one of five core programmes, supports initiatives to make palliative care a part of public health systems worldwide. The Open Society Foundations has supported efforts to have palliative care recognised as a human right and campaigns for improved access to pain relief.

For more information on click here.


What are the priorities for developing culturally appropriate palliative and end-of-life care for older people?

A research team from New Zealand has recently published an article on the priorities for developing culturally appropriate palliative and end-of-life care for older people.

Bellamy and Gott (2013) What are the priorities for developing culturally appropriate palliative and end-of-life care for older people? The views of healthcare staff working in New Zealand. Health and Social Care in the Community. 21(1), 26–34

The abstract is reproduced below and the full article can be accessed here.


This paper explores the views of healthcare staff regarding the provision of culturally appropriate palliative care for Māori, PacificIsland and Chinese elders living in Auckland, New Zealand. The ageing population is culturally and ethnically diverse and, along with other developed countries experiencing high levels of migration, the challenge is balancing the rise in numbers of older people from different ethnic and cultural groups with end-of-life care, which reflects personal values and beliefs. Two joint interviews and ten focus groups were conducted with eighty staff across a range of primary, secondary and speciality care settings in 2010. The findings demonstrated that participants viewed the involvement of family as fundamental to the provision of palliative care for Māori, PacificIsland and Chinese elders. For Māori and Pacific Islanders, healthcare staff indicated the importance of enabling family members to provide ‘hands-on’ care. The role of family in decision-making was fundamental to the delivery of and satisfaction with care for older Chinese family members. Care staff highlighted the need to be cognisant of individual preferences both within and across cultures as a fundamental aspect of palliative care provision. The role of family in ‘hands-on’ palliative care and decision-making requires care staff to relinquish their role as ‘expert provider’. Counter to the prioritisation of autonomy in Western health-care, collective decision-making was favoured by Chinese elders. Providing families with the requisite knowledge and skills to give care to older family members was important. Whilst assumptions are sometimes made about preferences for end-of-life care based on cultural values alone, these data suggest that care preferences need to be ascertained by working with family members on an individual basis and in a manner that respects their involvement in palliative care provision.

‘The Tibetan Book of Living and Dying’ and ‘Life, Death and the After Life’

This month, I review two books on Tibetan Buddhist beliefs about death, dying and the ‘after death’: The Tibetan Book of Living and Dying by Soygal Rinpoche and Life Death and After Death by Lama Yeshe.

The Tibetan Book of Living and DyingThe-Tibetan-Book-of-Living-and-Dying-Rinpoche-Sogyal-9780062508348

For those people, myself included, who have tried and failed to make it through the Tibetan Book of the Dead, The Tibetan Book of Living and Dying comes as a relief. The first part gives an introduction to some basic Buddhist concepts, such as the impermanence of conditioned existence and the ‘true perfect nature of the mind’. Soygal Rinpoche explains that the ‘true nature of the mind’ can be experienced through meditation and a number of meditation practices are described.

The second part focuses on providing advice on how to help the dying, including information about communication, cultivating compassion, and providing spiritual and bereavement care.

Tibetan Buddhism encourages followers to mediate on death, indeed, to experience the process of death through meditation and to prepare throughout their lives for the moment of death. A person’s state of mind approaching and at the moment of death directly influences their next rebirth. A good death therefore means a good rebirth, and the consequences of a bad death are far-reaching. Helping others ‘die well’ is considered an important part of preparing for one’s own death and parallels are drawn between Tibetan Buddhist end-of-life practices and the approach to care taken by the modern hospice movement. The work of Elisabeth Kübler-Ross and Cicely Saunders, amongst others, is praised for challenging the medicalisation of death and for providing compassionate care for the dying.

The actual dying process (the painful ‘bardo’ of dying) is described from the viewpoint of Tibetan Buddhist teachings. The physical deterioration that often precedes death is described in terms of the four elements that make up the body (fire, water, earth and air) dissolving and disappearing one by one. According to Tibetan Buddhism, after a person has been declared medically dead, there are still a number of internal processes (the inner dissolution) that continue before the ‘mind’ actually leaves the body. It is therefore recommended not to move the body during this time.

Some of the advice given in the book resonates with palliative care principles. For example, telling the truth about diagnosis and prognosis is considered essential in order for the patient to prepare for death. People are encouraged to talk with their relatives and physicians about their end-of-life preferences and living wills are recommended. Futile medical interventions are also discouraged: when it is certain that death is near, medical staff are advised to avoid disturbing the patient, turn off monitors, stop taking tests and to move the patient to a private room if possible.

Ethical debates surrounding death and dying are also addressed (in the appendix). Prolonging life, when there is no hope of recovery, is said to be worthwhile only if a person is capable of having positive, virtuous thoughts. Euthanasia is also discussed: no explicit opposition to euthanasia is stated, however, both Cicley Sauder’s and Elizabeth Kübler-Ross’ arguments against euthanasia are outlined.

Although the more dogmatic sections may put some people off, The Tibetan Book of Living and Dying is, at its core, about genuine and compassionate care for the dying and, as such, has relevance for people from a wide range of backgrounds and beliefs.

Life, Death and the After Life

Lama YesheLife, Death and the After Life covers much of the same subject matter as The Tibetan Book of Living and Dying. The book consists of the transcripts of three talks given in the 80s by Lama Yeshe, a charismatic Tibetan Buddhist teacher.

The book does not situate Buddhist teachings in their historical or cultural context to the same extent as The Tibetan Book of Living and Dying, however, its shorter length, simple language and often humorous approach makes it a very accessible introduction to the core Tibetan Buddhist beliefs on death and dying.

The book also gives simple meditation techniques that it claims can help people achieve equanimity and cultivate compassion. Meditating on the process of death is recommended to dispel fears about death and lead to a better death when the time comes.

Reviewer: Natalie Evans

For the next bookclub, Natalie will review The Wounded Storyteller: Body, Illness and Ethics by Arthur W. Frank. If you would like to suggest a book for review, or review a book yourself, please get in contact with Natalie –

Research Fellow – University of Sheffield (Public Health)

The University of Sheffield is advertising for a Post-doctoral Research Fellow to  work on a EU project on health technology assessment for complex interventions using a specialist palliative care as a case study.

For more information click here.