Module 4 – Part 2 – Terminal illnesses, death and dying

Perceptions of death and dying are strongly influenced by social, cultural and religious dimensions. They play an important role in the emotional approach to death and dying, in communicating between patients, caregivers and clinicians, in the choice of therapy and in decision-making regarding end of life directives.

In transcultural settings of death and dying two medical ethical principles are specifically relevant: autonomy and non-maleficence. While in most European and US-American medical contexts individual patient autonomy is the leading ethical principle, in other settings, often families are the preferred decision makers and individual autonomy might be experienced as isolating (Kagawa-Singer, Blackhall 2001). In some circumstances, families might not want to burden their loved one with an unfavorable diagnosis or prognosis but rather want to give hope even though from a medical perspective this might not be warranted. The disclosure of a terminal disease might also be considered as disrespectful or as harmful to the patient. In these cases, families might prefer to take responsibility for important medical decisions.

In a study on migrants from Korea living in the USA, interview partners clearly rejected the view that the diagnosis of metastasizing cancer should be disclosed to patients; decisions on end of life care should rather be taken by the family than by the patient. An interviewed woman stated: „Reflecting on my experience, if the patient were to know their disease, it would cause anguish. So I think it would be better not to inform the patient, and in that way the patient could pass away less fearfully. In the case of cancer, the patient cannot stop thinking about their own death: it is not good“ (Frank et al. 1998:409).

To realize cultural sensitivity in the context of death and dying in a clinical setting is challenging and complex. It requires to be self-reflexive and to understand underlying world-views in end-of-life decisions that could lead to potential conflicting interests of the patient’s caretakers and clinicians.

It is useful to ask the patient specific questions and involve caretakers before conflicts arise. The following questions might be helpful in clinical practice (Ngo-Metzger et al. 2008; Clark 2010; Kleinman 2010):

  • How does the patient want to be informed about his illness or condition? How does he/she want to decide over therapies? Who should be involved in this decision-making? (he/she alone, in presence of a relative or care-taker)
  • What do patients and/or caregivers fear most in this process? (pain, loss of identity or autonomy, isolation, conflict with relatives)
  • How does the patient want to spend his last days?
  • What are the patient’s perceptions and practices regarding death and dying?
  • What is seen as the adequate response to the death of a loved one?