Culturally Sensitive Palliative Care and Beliefs about Dying

This article or area is currently under construction and may only be partially complete. Please come back soon to see the finished work! (6/08/2020)

Original Editor - Kehinde Fatola

Top Contributors - Naomi O'Reilly  

Introduction

Culture basically describes the characteristics of individual and group identity. An organized group of learned responses, a system of ready-made solutions to the problems people face that is learned through interactions with others in society.[1] Common components of culture ";include a groups shared values, customs, and beliefs that are manifested in behavior.[2] Culture "provides the foundation for schemata used to process memories, form personality expression, and determine appropriate reactions to environmental stimuli" and "cultural belief systems interact with all aspects of information processing.[1]

Cultural sensitivity is the integration of cultural knowledge and awareness into individual and institutional behavior.[2] This sensitivity affects how a clinician interacts with each patient, and impacts communication choices, specific behaviors during treatment, and recommendations and options offered to patients. A practitioner who identifies cultural differences, understands how those differences can affect health habits and healthcare practices, and then integrates that understanding into his or her own day-to-day interactions with patients can be described as culturally sensitive.[3] Provision of healthcare in a culturally sensitive manner involves responsiveness to the attitudes, feelings, and circumstances of people that share common identifying characteristics (e.g., race, religion, language, and socioeconomic status).[4] Cultural competence requires deeper integration of this sensitivity into practices and protocols to ensure that the care provided will "accommodate cultural differences in health-related values and beliefs.[4]

Palliative Care

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.[5] Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family.[6]

Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.[6]

Stakes of quality of care are high for persons facing serious illness and their family members. Cultural beliefs and practices are particularly salient within patient and family members' experiences of suffering.[7] Yet, they are often poorly understood by clinicians, especially when the clinicians' backgrounds differ from those of their patients.[8] Lack of sufficient knowledge about how patients' cultural beliefs and practices inform the meaning of the disease and its salience for individual members may contribute to disparities in palliative care across the care continuum.[9] For example, hospice, considered the standard of end-of-life palliative care in the U.S., has disproportionately been used by white, Northern European descent groups.[10] Although utilization of these services by diverse groups is improving in some areas of care for patients with serious illnesses, disparities still exist.[11]

Overall, disparities in care mean that people of color, of diverse sexual orientation and disabled, are less likely to receive care that aligns with their wishes than dominant cultural whites,[12] and they report lower levels of satisfaction with end-of-life care.[13] The provision of culturally informed and responsive care may ultimately change how diverse groups see end-of-life care care options.[14]

Notably, in addition to providing palliative care for patients and families that is sensitive, acceptable, and effective for diverse populations, a focus on culture is beneficial to health systems.[7] For example, early, high-quality palliative care has been shown to prevent expensive, unwanted end-of-life interventions later,[15][16] simultaneously improving quality of life for patients [17][18][19] as well as their loved ones.[20][21][22]

Cultural sensitivity in palliative care can be illustrated in four areas;[7] preferences for care, communication patterns, meanings of suffering, and decision-making processes. In elementary biology, death is the last characteristic of all living organisms. Regardless of how or where we are born, what unites people of all cultures is the fact everyone eventually dies. However, cultures vary in how they conceptualize death and what happens when a person dies. In some cultures, death is conceived to involve different conditions, including sleep, illness, and reaching a certain age. In other cultures, death is said to occur only when there is a total cessation of life. Similarly, certain cultural traditions view death as a transition to other forms of existence; others propose a continuous interaction between the dead and the living; some cultures conceive a circular pattern of multiple deaths and rebirths; and yet others view death as the final end, with nothing occurring after death.

These different conceptions have a noticeable influence on their lifestyles, their readiness to die for a cause, the degree to which they fear death, their expressions of grief and mourning, and the nature of funeral rituals. Any reasonably broad conceptualization of death issues would necessarily have to incorporate these various cultural variations.[23] The difficulty of having a unitary view of death or the death experience can be better appreciated when we realize that it is problematic to even define what we mean by death. For more than a hundred years, the clinical definition, referring to the absence of heartbeat and respiration, was the basis on which a person was deemed to be dead.[23] However, advances in medical technology that made it possible for vital signs to be sustained by machines, led to the modifications in this definition to whole brain death, which refers to death as either the “irreversible cessation of circulatory and respiratory functions, or irreversible cessation of all functions of the entire brain, including the brain stem”.[24] Thus, the controversy surrounding the definition of death is therefore not surprising that beliefs and conceptions about death and dying vary widely across cultures.

Some South Pacific cultures believe that life, as is generally construed, departs the body of a person in different situations, such as when one is ill or asleep.[25] Thus conceptualized, people can be said to “die” several times before the final death. This also means that a person can be defined as dead without meeting many of the criteria listed in the above definition or definitions found in the social and medical literature.[23] The differences in conceptions about death extend to what exactly happens when one is dead, however defined. Some religious and cultural traditions, such as Hinduism, envision a circular pattern of life and death where a person is thought to die and is reborn with a new identity. This exit and reentry into life can occur multiple times. This contrasts with the Christian view where death is believed to occur only once. However, Christians do not believe that everything ceases at death. The person sheds his or her bodily form but continues on in spirit where there are consequences: the faithful – believers who kept the faith – are rewarded with eternal joy in heaven, and sinners proceed to hell where there is endless pain and suffering. Among some Native American tribes and certain segments of Buddhism, the dead and the living coexist, and the dead can influence the well-being of the living. If the dead (ancestral spirits) are properly propitiated, the likely outcome is a benevolent spirit that protects the interests of the living. If not accorded the appropriate treatment, the result is an unhappy spirit that may ignore the wellbeing of the living, leading to misery. There are, of course, some cultures in which death signals an abrupt and permanent disengagement. In some instances, people are prohibited from even mentioning the names of the deceased in the fear that doing so may actually endanger the lives of the living or prevent the ghost from leaving this earth and attaining peace.[23]

Cultural Beliefs about Death and Dying

Irrespective of how death is defined, each culture has notions of how death ought to occur. There is a distinction between an “acceptable death” and a “good death” for the person who is dying.[26] An acceptable death is said to be non-dramatic, disciplined, and with very little emotion. This is the atmosphere that seems to exist in structured settings such as hospitals in the West where most people die. On the other hand, a good death is said to be one that allows for social adjustments and personal preparation by the dying person and his or her family. This is a time when the dying person attempts to complete unfinished tasks, to say farewells, and for the family to begin to prepare for life without the dying. Among the Kwahu-Tafo of Ghana, a good death is one in which the dying person has accomplished most of what he or she set out to do and has made peace with others before dying.[27] In Nigeria, death of one that has lived a long, and for the most part a successful, life can often be inferred from the nature of the captions in their obituaries. In such cases, the preambles go along the lines of “with gratitude to God for a life well spent....” captions that would never be seen for one that has died an early death or death that has occurred under very tragic circumstances. Yet in other societies, a good death may be one in which a person dies in service of his country or religion; in other words, the person is regarded as a martyr.[28] It is important to examine these cultural variations in conceptions of death and dying because they have significant implications on how people act in life, how they approach death, whether or not they fear death, and on their funeral and bereavement practices. An obvious implication of how notions about death and dying influence actions is the phenomenon of suicide bombings. This is a fairly recent phenomenon, believed to have started in the early 1980’s by Lebanon’s Shi’ite extremist Muslim group Hezbollah, which was influenced by the way Iran used humans as minesweepers in their war against Iraq. By 1994, two Palestinian groups, Hamas and Islamic Jihad took up the practice. Initially, only a few people joined the suicide squads, and even then, with little enthusiasm. They had to be subjected to several months of training in what appeared to be extreme indoctrination. Today, people willingly compete for the privilege of being selected into the suicide squads. The major change from the initial reluctance and the current enthusiasm seems to be the modification in their conception of death and what awaits them after death.[23]

Even though all humans may experience death, conceptions about death and how we respond to issues of death and dying vary widely across cultures. As the world is increasingly shrinking due to the extensive interaction of people from cultures across the world, it is important to understand the complexities that surround the issues of death, just as we do the issues of life. This will better prepare us to respect and understand people from other cultures, and respond to them in ways that are meaningful to them and ourselves so that their lives and ours may be enriched in the process.[23]

Resources

References

  1. 1.0 1.1 Seibert PS,Stridh-Igo P, Zimmerman CG. A checklist to facilitate cultural awareness and sensitivity. Journal of Medical Ethics. 2002; 28 (3):143-6.
  2. 2.0 2.1 Wells MI. Beyond cultural competence: A model for individual and institutional cultural development.Journal of Community Health Nursing. 2000; 17 (4):189-99.
  3. Wells MI. Beyond cultural competence: A model for individual and institutional cultural development. Journal of Community Health Nursing. 2000; 17 (4):189-99.
  4. 4.0 4.1 Wells MI. Beyond cultural competence: A model for individual and institutional cultural development. Journal of Community Health Nursing. 2000; 17 (4):189-99.
  5. World Health Organization. Cancer - WHO Definition of Palliative Care. Available from; https://www.who.int/cancer/palliative/definition/en/ (last accessed 17/June/2020)
  6. 6.0 6.1 Centre to Advance Palliative Care. What is Palliative Care?. Available from; https://getpalliativecare.org/whatis/ (last accessed 17/June/2020)
  7. 7.0 7.1 7.2 Cain CL, Surbone A, Elk S, Kagawa-Singer M. Culture and Palliative Care: Preferences, Communication, Meaning and Mutual Decision Making. Journal of Pain and Symptom Management. 2018; 55 (5): 1408-19
  8. Periyakoil VS, Neri E, Kraemer H. Patient-reported Barriers to High-quality, End-of-life Care: A Multiethnic, Multilingual, Mixed-methods Study. Journal of Palliative Medicine. 2016; 19: 373-9
  9. Worster B, Bell DK, Roy V, Cunningham A, LaNoue M, Parks S. Race as a Predictor of Palliative Care Referral Time, Hospice Utilization, and Hospital Length of Stay: A Retrospective Noncomparative Analysis. American Journal of Hospice and Palliative Medicine. 2018; 35: 110-16
  10. Karikari-Martin P, McCann JJ, Farran CJ, Hebert LE, Haffer SC, Phillips M. Race, Any Cancer, Income, or Cognitive Function: What Influences Hospice or Aggressive Services Use at the End of Life Among Community-dwelling Medicare Beneficiaries?. American Journal of Hospice and Palliative Medicine. 2015; 33: 537-45
  11. Koss CS, Baker TA. Race Differences in Advance Directive Completion. Journal of Aging and Health. 2017 ;29 (2): 324-42.
  12. Koss CS, Baker TA. Race Differences in Advance Directive Completion. Journal of Aging and Health. 2017 ;29 (2): 324-42.
  13. Lee JJ, Long AC, Curtis JR, Engelberg RA. The Influence of Race/Ethnicity and Education on Family Ratings of the Quality of Dying in the ICU. Journal of Pain and Symptom Management. 2016; 51(1): 9-16.
  14. Gomes B, Higginson IJ. Where people die (1974—2030): past trends, future projections and implications for care. Journal of Palliative Medicine. 2008; 22: 33-41
  15. Khandelwal N, Benkeser DC, Coe NB, Curtis JR. Potential influence of advance care planning and palliative care consultation on ICU costs for patients with chronic and serious illness. Crit Care Medicine. 2016; 44: 1474-1481
  16. Smith S, Brick A, O’Hara S, Normand C. Evidence on the cost and cost-effectiveness of palliative care: a literature review. Journal of Palliative Medicine. 2013; 28: 130-150
  17. Zimmermann C, Swami N, Krzyzanowska M, et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. The Lancet. 2014; 383: 1721-1730
  18. Meier DE. Increased access to palliative care and hospice services: opportunities to improve value in health care. The Milbank Quarterly. 2011; 89: 343-380
  19. Gelfman LP, Meier DE, Morrison RS. Does palliative care improve quality? A survey of bereaved family members. Journal of Pain and Symptom Management. 2008; 36: 22-28
  20. Sarmento VP, Gysels M, Higginson IJ, Gomes B. Home palliative care works: but how? A meta-ethnography of the experiences of patients and family caregivers. BMJ Support and Palliative Care. 2017; 7: 0
  21. Brandstätter M, Kögler M, Baumann U, et al. Experience of meaning in life in bereaved informal caregivers of palliative care patients.Support Care in Cancer. 2014; 22: 1391-1399
  22. Dionne-Odom JN, Azuero A, Lyons KD, et al. Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: outcomes from the ENABLE III randomized controlled trial. Journal of Clinical Oncology. 2015; 33: 1446-1452
  23. 23.0 23.1 23.2 23.3 23.4 23.5 Gire J. How Death Imitates Life: Cultural Influences on Conceptions of Death and Dying.Online Readings in Psychology and Culture. 2014; 6(2)
  24. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1981). Defining death: A report on the medical, legal and ethical issues in the determination of death. Washington, DC: Government Printing Office.
  25. Counts DA, Counts, DR. I’m not dead yet! Aging and death: Processes and experiences in Kalia. Aging and its transformations. 1985. (pp. 131-156). Langham, MD: University of America Press
  26. Kellahear A. Dying of cancer: The final year of life. London, England. 1990; Harwood Academic Publishers.
  27. Van der Geest S. Dying peacefully: Considering good death and bad death in Kwahu-Tafo, Ghana. Social Science & Medicine. 2004. 58(5), 899-911.
  28. Rosenblatt PC. Grief across cultures: A review and research agenda. In M. S. Stroebe, R. O. Hansson, H. Schut, & W. Stroebe (Eds.), Handbook of Bereavement research and practice: Advances in theory and intervention. 2008; (pp. 207-222). Washington, DC: American Psychological Association