Key considerations: end-of-life care

End-of-life care in general

A provider needs to consider the client and family’s perspective on:Death and dying.

• Health and suffering.
• Hospice and palliative care services.
• The acceptance of Western health care practices and their use of alternative traditional practices.
• The role of spiritual and religious beliefs and practice.
• The role of the family, including who is considered part of the family.
• How the client and family communicate (such as the need for interpreter services or that only certain words are acceptable when discussing illness and dying).
• The client’s own role in problem solving and in the process of decision making.

Chinese communities

• Many Chinese clients may be reluctant to discuss end-of-life issues due to the belief that if you talk about something bad, it could occur.
• Families make every attempt to prevent someone from dying. Longevity is more important than the quality of life. For Chinese people an advance directive is uncommon.

Korean communities

• Illness is considered a family event, rather than an individual occurrence with decision makers traditionally the leader of the family.
• There may be a conflict between the quality of life of the dying person and the filial piety of the children who are expected to do their best for their loved one who is dying.
• Beliefs about life after death differ according to a person’s age, religion, education and life experiences.

South Asian communities

• It is very important for family members to be at the bedside of the terminally-ill client praying and chanting hymns.
• Sikhism and Hinduism share a culture and world view that affects end-of-life decisions and care in a number of ways:There is a perception that talking about death may make it occur and therefore the family are often reluctant to let their loved one know about a terminal illness.
  • There is a preference to die at home or in a hospital but not in a palliative care unit as the latter are seen as a place for dying people and may be seen as tainted.
  • Withdrawal of food and water at the end-of-life is not likely to occur because it is believed that both are needed for a good death.
  • There may be a reluctance to use pain killers as pain must be endured (to help reach a higher state of mind).
  • Withdrawal of treatment is acceptable if it is futile.

Muslim communities

• Traditional Muslim patients consider physicians as the authority in matters relating to medical intervention. They tend to symbolically and formally introduce the physician into the family and the physician is expected to direct rather than just facilitate medical management.
• During illness, Muslims are expected to seek God's help with patience and prayer with family and an Imam present.
• Following death, allow the family and Imam to follow the Islamic guidelines for preparing the body for an Islamic funeral.
• It is important that funeral and burial arrangements are made in advance in consultation with the family and according to the wishes of the dying or deceased client if possible.
• Do not insist on autopsy or organ donation unless legally necessary.

Managing communication about serious illness and bad news

• Ask clients (who are competent to make decisions) how they wish to be informed about their diagnosis and treatment information, and about how treatment decisions are to be made.
• It is important to, when breaking the news to the family member(s), to inform them that in New Zealand it is legally not acceptable if the client is competent to make decisions, that a family member or family spokesperson makes treatment decisions or signs the informed consent for treatment on the client’s behalf. Therefore it is necessary to ensure the family member(s) break the news to the client before treatment decisions are discussed or before the consent form is presented to the client.
• The outcome of discussions with clients should be clearly noted in the client’s medical records and, should also verbally be communicated to subsequent care providers at ‘hand overs’.

How to manage when family and medical views conflict

• Listen and hear the values and views of family members respectfully.
• Explain the medical view and what quality of life means (some CALD cultures value quantity of longevity more than quality of life).
• Demonstrate awareness and understanding of their need to do their very best for their loved one and negotiate and balance medical, legal and cultural views to help family members accept medical advice.
• If needed, seek support from a cultural support service and the medical-legal advisor in the organisation.