Cultural Issues in End of Life Care
Dr Rod MacLeod
Issue 4, August 2001
In many societies people define themselves by their religious and cultural grouping, even when their faith or immersion in religion or culture is limited. There are wide variations between people of differing faiths, ethnic backgrounds and national origins and their approach to the end of life. New Zealanders are no exception. This country is inhabited and created by people from a broad range of ethnic and cultural origins. Although four fifths of the population is comprised of people from European descent this does not mean that generalizations can be made in their approaches to the end of life.
Earlier this year two major palliative care conferences highlighted variations in the approach to dying from both the patient's and professional's perspective.
The 7th Congress of the European Association for Palliative Care was held in Palermo, Sicily and was attended by over 2000 people from the countries of Europe and beyond. In May the 4th Asia Pacific Hospice Conference was held in Taipei, Taiwan and was attended by over 800 people predominantly from the Asia/Pacific region.
Each of these conferences addressed, among other things, the need to be more aware of the breadth of cultural influences on approaches to end of life care.
One point that was repeatedly emphasized was that perhaps the most important task of the professional carer is to ask the patient and family what their needs are. None of us are knowledgeable enough to be able to make assumptions about what individuals needs are – and it is not uncommon to find that those people who are different from ourselves are put into categories, as it seems easier to deal with them if they belong to a group with clearly defined norms. By asking for information and guidance about the appropriate way to proceed opportunity opens up for the patient and family to explore their own understandings and traditions. This can often stimulate a relationship that leads to a level of human understanding that is hard to reach when patient and professional come from the same religious or cultural group where a shared understanding is assumed and not explored.
At the European conference, presentations reinforced the patient's need to maintain a sense of control that is closely related to a need to seek information. Papers from Italy, Greece, Germany and the UK outlined that physicians facing this issue are often influenced by their own cultural beliefs. There is evidence to support the view that physicians also differ in their practice depending on the class or cultural origins of the patient. The situation in Asian countries varies also. In China, for example there is often a great pressure from the family for the patient not to be told the truth. In May 2000, the "Hospice and Palliative Care Act" was passed in Taiwan. Prior to this Act, medical law insisted that all people who were dying had to be resuscitated, no matter what the cause of death – the hospital "should try their best to treat". This was compounded by the fact that the notion of advanced directives or even wills is unknown to many in that country. The passing of the Act will ensure that there will be no repeat of the resuscitation of 100,000 terminally ill people, as it is estimated there was the previous year. Patients and families are more inclined to be actively involved in decision-making than before in many Asian countries. This is assuming that early diagnosis can be made. This is a major problem for some countries where over 50% (Indonesia) to 80% (Thailand) of people presenting with cancer are deemed to be terminally ill with advanced and destructive disease.
Different cultures have different views on nutrition and hydration at the end of life. This was similarly highlighted in both international conferences. In Europe the concept of values-based medicine that balances evidence-based medicine with ethics, has led to the need for further discussion about any conflict of values in stopping life supporting care and treatment. There has been much debate about whether or not hydration and/or feeding should be deemed medical treatment. Societal expectations are variable. In Taiwanese and Chinese cultures naso-gastric feeding, for example, has symbolic meaning and in many hospital settings an intravenous line is seen as 'life-line'. Eating and the need for food holds greater significance in these cultures than in many others and it is the family values that are seen to be more important than individual values in many parts of the world.
What these areas of care demonstrate is the constant need for effective and understanding communication between patients, families and carers. In New Zealand, the National Strategy for Palliative Care states that the needs of Māori and Pacific peoples must be met. This will clearly include their cultural and religious needs as well as their physical and psychological needs. However it is also estimated that by the year 2016 the population of people of Asian origin will double to 316,000 (Statistics New Zealand, www.stats.govt.nz). Their needs, along with other growing populations, will have to be met.
Without the accurate and honest provision of information in the right form, at the right time, there can be little hope of an understanding being reached about the situation the patient and family are facing and the goals of care that are being formulated. Without asking, we cannot know what individuals need to make a difference to the end of their life. That asking must include an acknowledgement of difference – difference in culture, in religious beliefs, in understanding, in expectations and in perceptions for hope at the end of life. Professionals must remain honest and open at all times – truth is like a drug and has its own pharmacology; insufficient doses are ineffective and may harm the patient's trust in the therapist.
By sharing information within and between cultures we will be better placed to provide the best possible care for people as they approach the end of their lives.
Further information may be gained from a popular book (which may soon be updated) that is available from public libraries entitled: The undiscovered country: customs of the cultural and ethnic groups of New Zealand concerning death and dying. New Zealand Department of Health 1986.
Dr Rod MacLeod is the Medical Director of Mary Potter Hospice, Wellington.