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How can Māori adult deceased organ donors be cared for in a culturally safe manner in intensive care units?

Elaine Stevens

Introduction

Part of the role of registered nurses is to be an advocate for those in their care who are unable to communicate their needs themselves. Tūroro (patients) who are declared deceased organ donors in intensive care units (ICU) are physically unable to state their preferences in real-time regarding their nursing care. Although the care of a deceased organ donor in intensive care units is a situation few undergraduate nursing students will actively participate in, it is complex situation in which the basic principles of nursing care can be applied to the consumer. One of these principles is the responsibility of providing culturally safe care, or kawa whakaruruhau, as part of the nursing role when caring for deceased organ donors. Kawa whakaruruhau must be applied during the care of Māori tūroro, New Zealand's indigenous population. The PICOT structure described by Whitehead (2013) was used to create the following research question: 'How can Māori adult deceased organ donors be cared for in a culturally safe manner in intensive care units?'. Several main themes have emerged from this review: including the importance of incorporating the individual's values into nursing care; how holistic nursing management lends itself to culturally safe care; and, the openness of nursing staff to Māori spirituality can facilitate culturally-safe care. Finally, the involvement of whānau is imperative in nursing a Māori deceased organ donor.

Clinical Issue

Māori are the tanagata whanua (people of the land), and a separate cultural group residing in New Zealand before colonisation. It is recognised that Māori have significant and distinct cultural needs, and these are enshrined in the Treaty of Waitangi/Te Tiriti o Waitangi (Durie, 2001). The care of Māori deceased donors offer a complex and unique challenge for nursing staff. A deceased organ donor is defined as, “a human being declared, by established medical criteria, to be dead and from whom cells, tissues or organs were recovered for the purpose of transplantation” (WHO, 2009). Less than 1 percent of people die in circumstances that allow for organ donation. The two possible circumstances when donation is possible are circulatory death and brain death (MOH, 2016). Statistically, Māori consist of 14.9 percent of the New Zealand population in 2013, yet Māori are less likely to be deceased donors, with seven in 2017, while the number of European donors was fifty-eight in the 2017. Pacific peoples counted for four donations in 2017, while representing 7.4 percent of the population in 2013. “Other” deceased donations equated to four donations in 2017, and came from Indian, Samoan, or Chinese ethnicities (Organ Donation New Zealand, 2017; Statistics New Zealand, 2013). For the family their loved one is spending their last days in a foreign, confronting environment, surrounded by tubes, wires and machines, and it is often described as a “life-changing” event (Fridh, 2014).

Kawa whakaruruhau is defined as, “the effective nursing practice of a person or family from another culture, and is determined by that person or family.” (Nursing Council of New Zealand, 2011). Dianne Wepa (2005) defines culture as, “our way of living … culture includes our activities, ideas, our belongings, relationships, what we do, say, think, are” (p. 31). An effective nursing partnership with Māori donors could be likened to biculturalism, or the co-existence of two distinct cultures (Durie, 1998). Protecting the donor's interests, working partnership with the donor's values, and participating in the donor's holistic management fulfils Treaty of Waitangi/Te Tiriti o Waitangi obligations. Under the Treaty of Waitangi/Te Tiriti o Waitangi, Māori cultural values, beliefs and practices are taonga (valued treasures) (Moeke-Maxwell, 2014). Caring for end of life tūroro has long been an integrated part of intensive care, however the addition of culturally appropriate care in nursing has only been in formal existence since the Nursing Council amended nursing standards in 1990 (Wepa, 2005). Recently, the Ministry of Health's 2017 review Increasing rates of deceased organ donation was criticised by the New Zealand Nurses Organisation (NZNO) for failing to include cultural considerations, and the NZNO called for mandatory cultural training for all organ donation staff (Kai Tiaki, 2016).

My rationale for discussing this issue is based on a personal experience that occurred during my nursing studies. After seeing a deceased donor nursed in an intensive care unit I was strongly struck by the collision between the end of life process, the personhood of the individual, and medical world. After preliminary research into organ donation in New Zealand I questioned how minority groups would better benefit from culturally-safe care in an environment that is perhaps one of the last bastions of singularly-focused Western medicine.

PICOT Question

The issue of caring for Māori deceased organ donors in a culturally-safe manner has been identified as problematic due to the lack of research around this issue, and the corresponding low numbers of Māori donors. Whitehead (2013) generated the PECOT model, an acronym used to refine research ideas to a researchable question, and this is shown in the following table.

Through application of the PECOT model, the research idea was developed into the research question: 'How can Māori adult deceased organ donors be cared for in a culturally safe manner in critical care?'. The literature search included key words and broad terms such as culturally safe care, end of life care, ICU, nursing, Māori, deceased organ donation, and palliative care.

Literature review

Cook and Rocker (2014) and Moeke-Maxwell (2014) agree that the goal of kawa whakaruruhau care during end of life is caring for the donor in a fashion consistent with the individual's values. Fundamental to maintaining culturally-safe care is understanding a tūroro's individual beliefs on what gives their life meaning. This can be difficult in a setting replete with depersonalizing machines, and nursing routines and rituals that are characteristic of an ICU environment. Cook and Rocker (2014) suggest that dialogue can be started by gaining a narrative from whānau about relationships, activities, and experiences memorable to the patient. The use of open questions, such as “Tell me about your...” or “Tell us what is important to... ,” can be used. Furthermore, nurses who subscribe to the attitude that, “I treat all people the same” need to adjust this attitude because Māori are not the same as everyone else. Rather, Moeke-Maxwell (2014) urges nurses to adopt the concept embedded in the phrase “ngā tāngata whakamana” (I will care for the mana of people first). When a nurse practises kawa whakaruruhau, they become an advocate, or a kaitiaki (guardian), for the client and their whānau, and their needs.

It is important to note that utilizing care based on the tūroro's wishes is important regardless of whether the wishes of the individual are known beforehand or not. The literature notes that effective advance care planning is often lacking in the circumstances. Marginalised populations, like Māori, infrequently have access to support services to draw up advance care planning while the individual is able to communicate (Crawley, 2005). However, if in place, they can be used to elicit patient wishes.

Nurses should be guided at all times by the ethical principles of non-maleficence, beneficence, and autonomy (New Zealand Nurses Organisation, 2010). A knowledge of one's self, or clarifying personal beliefs and values, has been highlighted as important in influencing nursing actions (Horton, Tschudin, & Forget, 2007). McCormack and McCance (2006) have argued that, “before we can help others we need to have insight into how we function as a person” (p. 56). Thus the attributes that express our humanness, including ethics and values, shape nursing practise and patient relationships. If nursing staff maintain ethical principles and patient values during their care then kawa whakaruruhau care of Māori deceased donors will be advanced.

Greater nursing understanding of how holistic management may also contribute to culturally sensitive end of life care for Māori donors. In New Zealand it is acknowledged that Māori subscribe to a more holistic healthcare worldview, as opposed to a biomedical model (Germov, 2014). Māori believe there is more to a person than their corporeal body (Ngata, 2005). Māori tūroro cultural beliefs may center around tikanga of tuku wairua (release of the spirit) at point of death, and allowing whānau to invite tohanga or kaumātua to assist in the end of life process (Mead, 2016). Moeke-Maxwell (2014) states that appropriate holistic nursing care requires the nurse to move beyond exclusively administering to the tūroro's physical and medical needs to care that acknowledges the wairua (the spiritual element). The most widely accepted Maori holistic health framework is the whare tapa wha (four-sided house) and using this model during end of life care for deceased donors can help maintain a general sense of positive well-being is preserved on social, cultural, emotional or spiritual levels (Durie, 1985). It is important to note that the taha, or sides of the house, are inherently connected and for Māori care in ICU to be addressed appropriately, each taha needs consideration (Walker, et al., 2008).

Discussion around Māori spiritual values indicates that a nursing awareness can help provide culturally-safe care. Moeke-Maxwell (2014) and Webb and Shaw (2011) point out that Māori beliefs around death are fundamentally different to New Zealand European attitudes. While historically nursing has been at the forefront of the inclusion of spirituality into healthcare, the prevailing medical model of death has been that death is the end of that individual (Barnum, 2003). In 2013 41.9 percent of New Zealanders reported they had no spiritual affiliation (Statistics NZ, 2014). Yet most Māori recognise that life and death are intertwined and that when the physical body dies, the wairua leaves the body and undertakes different journeys. Some go to Ranginui, the Sky Father, or to the underworld, or remain close to their kin in the burial grounds, significant places, or in the landscape (Mead, 2016). A study by Webb and Shaw (2011) identified that tikanga beliefs and practises varies across iwi, hapū and individuals. For instance, some Māori think of organ donation as strengthening the whakapapa of the donor, and contributing to the whakapapa of the recipient.

Human beings also have mauri, a life force attached to a person until they die. The concept of mauri has largely been over-looked in discussions about end-of-life nursing care (Moeke-Maxwell, 2014). The mauri is particularly salient as the dying and their whānau embrace the interface between life and death. The need to provide care that is truly whānau-centred is crucial at this time, for the donor and whānau must be seen and treated in their totality. Understanding this concept can increase a nurses’ awareness of the sacredness of each individual patient and their whānau, promoting culturally-safe care. Cook and Rocker (2014) offer the suggestion of using introductory questions such as, “Many people have beliefs that shape their lives and are important at times like this. Is there anything that you would like me to know?”, to assist a discussion. While there is no one definition of a good death (Steinhauser, et al., 2000), a “good enough death” (McNamara, 2004), for most people, means spiritual concerns need to be addressed.

The literature points to the involvement of whānau in facilitating culturally-safe care for the donor, regardless of identified ethnicity. However, for Māori whānau involvement is intrinsic, and individual and family identities are not distinct entities (Durie, 1994). Intimate whānau involvement during the process of deceased organ donation is therefore expected, and should be encouraged. In one study intensivists reported that raising the topic of organ donation with Māori will consistently include immediate and extended whānau. This can involve large numbers of people contributing to the discussion (Shaw, 2010). In turn this requires a higher level of skill and confidence by all staff in caring for the donor. Historically, ICU environments have not been designed for whānau-orientated care. Nurses have reported the lack of private rooms when providing end-of-life care as a chronic problem (Espinosa et al., 2008). Māori families are also less likely to have organ donation mentioned or formally discussed with them. For instance, a discussion occurs 78% of the time with Māori donors, in comparison to 97% of the time with European donors (MOH, 2016b). Bascom and Tolle (1995) have argued that provisions for family during the death of a family member should include open and frequent communication between staff and patient or their family; the need to be aware of family dynamics; attention on what the patient would desire, and a focus on the patient's comfort. Practical steps such as enabling family and friends to participate in patient care (e.g. hair washing, oral care, or massage) can include whānau.

Global context

Nursing today is practised in a globalised world. A quick glance around any tertiary setting in New Zealand will reveal a variety of ethnicities in hospital beds being tended to by nurses from many different cultural backgrounds. Overseas research indicates that the phrase 'culturally-safe care' for dying patients is enshrined in various terminology, and is practised in a variety of ways. The American nursing theorist Madeleine Leininger developed the culture care theory in the late 1970s, and it is defined as a, “formal area of study, research, and practice, focused on culturally based care beliefs, values, and practices to help cultures or subcultures maintain or regain their health (wellbeing) and face disabilities or death in culturally congruent and beneficial caring ways” (Leininger, 1999, p. 9). Leininger argued that nurses who use observation, participation and interviews gain a better understanding of that culture, thereby gaining cultural knowledge. This knowledge then guides holistic care.

The concept of brain death in Western medicine relies heavily on a line of thought developed by ancient Greek philosophy and René Descartes' concept of cogito ergo sum (“I think, therefore I am”) (Stetta & Shemie, 2015). In another words, greater value is placed on the mind and brain than other organs. However, death and the value of a deceased donor, may be defined differently for other religions and ethnicities. American policy has branched out to include cultural differences in intensive care units. For instance, New Jersey has amended brain death legislation allowing for an exception based on religious beliefs (Koenig & Bates-Williams, 1995). In Australia three to eight Aboriginals donated per year between 2008 and 2014 (Australia and New Zealand Organ Donation Registry, n.d.). The 2008 Taskforce report stated concerns about cultural disparities and complexities regarding Aboriginal/Torres Strait Islanders organ donation (National Clinical Taskforce on Organ and Tissue Donation, 2008). The Australian Organ and Tissue Authority set out strategies in 2014-2018 to engage indigenous Australians in culturally appropriate information about organ donation, and, “develop advanced Family Donation Conversation modules on faith and cultural perceptions and requirements” (Ernst & Young Global Limited, 2016).

Implications for practise

Historically, New Zealand deceased donor rates are low in comparison internationally. In 2013 New Zealand ranked thirty-eight in the world with 8.1 deceased donors per million people, below Australia, the United Kingdom and America (Ministry of Health, 2016c). The 2016 discussion paper Ethnic, cultural and religious differences in relation to deceased organ donation states that one of the possible reasons for this is the “inability of health providers to bridge cultural gaps” (p. 3). The paper suggests further training around cultural competence to support Māori through the donation process, and more consideration into whether cultural advisors, such as kaumātua, could be more involved in the donation process to support Māori whānau. By engaging in culturally appropriate care a secondary benefit is that the nursing partnership with Māori and their whānau becomes more effective, increasing awareness about the need for, benefits and process of organ donation.

Recommendations and rationale

• A study to be conducted in regards to providing culturally-safe nursing care in intensive care units, particularly focused around Māori.

Rationale: During my search I discovered that there is scant literature exclusively devoted to kawa whakaruruhau of Māori deceased tūroro in intensive care. Extensive searching across CINAHL, ProQuest, PubMed and Gale Cengage databases has not uncovered any New Zealand research focused this issue, without being attached to explaining why organ donation rates among Māori are low. Furthermore, practising nursing in a culturally safe manner is legally enshrined in New Zealand law, under the Health Practitioners Competence Assurance Act 2003 (HPCA Act, 2003). A study would generate information to further guide nurses' practise. The aims of the study would explore defining characteristics of culturally-safe care of Māori deceased donors, focusing on whānau feedback. The data generated would most likely be qualitative and exploratory, and useful for tertiary hospitals to develop protocols. As mentioned above, Māori are a significant cultural and ethnic group in New Zealand, and a study moving away from generalist care to more specialised is long overdue. In addition, as New Zealand opens its doors to more ethnic minorities, for instance Syrian refugees, the chances increase that some will require ICU care in the future. By developing a platform now, nurses will be better equipped to serve their community.

• Developing training to suitably qualify nurses to nurse-lead Māori deceased organ donation.

Rationale: The United Kingdom and United States use specialist organ donation nurses, as well as intensivists, to lead the organ donation process within intensive care units and emergency departments (Pickersgill & Jean, 2011). In New Zealand, switching from medical-led model to a nurse-led model could ensure that the areas discussed above that contribute to Māori deceased donors being cared for in a culturally safe manner eventuate. Auckland City Hospital transplant physician Ian Dittmer has publicly stated that specialised staff should approach families about organ donation, rather than medical staff (Hunt, 2010). This is underscored by Sorensen and Iedema (2007) who argue that since nurses have unique insights in the dying patients’ situation and are patients' advocates, they should be given a more prominent in their role. In addition, it is nurse managers who oversee staffing and bed management in intensive care units, and who would be best placed to arrange the ward in a patient-centered manner.

Conclusion

In conclusion, the role of the nurse is highly important and influential in end of life care for deceased Māori organ donors in intensive care units. The literature has shown that the nurse's role and their care can be significantly enhanced with the application of kawa whakaruruhau, or culturally safe care. The literature has found that by using culturally safe care a more holistic approach is taken, incorporating Māori spiritual values, involving whānau in end of life care, and caring for the individual in a way that reflects their personal values. Further research and training for nursing staff needs to be done in order to move culturally-safe care into more specialised, critical care environments, especially when the health consumer is unable to verbalise their wishes about care. It has been noted that the idea of using body parts in a medical manner is new to Māori: “One hundred years ago there were no options for Māori. This is all new for Māori … ” (Te Puni Kōkiri, 1999). As the nursing partnership continues to put the consumer at the heart of patient-centered care the hope is that Māori organ donations increase, and Māori that come into nursing care see nursing staff as their advocates.

Reference List

Australia and New Zealand Organ Donation Registry. (n.d.). Annual reports. Retrieved from             http://www.anzdata.org.au/anzod/v1/reports.html

Barnum, B. (2003). Spirituality in nursing. New York: Springer Publishing Company.

Bascom, P.B., & Tolle, S.W. (1995). Care of the family when the patient is dying. Western Journal           of Medicine, 163(3), 292-296.

Cook, D., & Rocker G. (2014). Dying with dignity in the intensive care unit. New England Journal         of Medicine, 370, 2506-14.

Crawley, L.M. (2005). Racial, cultural, and ethnic factors influencing end-of-life care. Journal of             Palliative Medicine, 8, 58–69.

Durie, M. (1985). A Maori Perspective of Health. Social Science & Medicine, 20(5), 483-486.

Durie, M. (1994). Whaiora: Māori health development. Auckland: Oxford University Press.

Durie, M. (2001). Mauri Ora: The dynamics of Māori health. Melbourne: Oxford University Press.

Espinosa, L., Young, A., & Walsh, T. (2008). Barriers to intensive care unit nurses providing        terminal care: An integrated literature review. Critical Care Nursing Quarterly, 31, 83-93.

Ernst & Young Global Limited. (2016). Deceased organ donation and transplantation:     Recommendations to improve practice in clinical settings and commentary on institutional     arrangements. Independent report commissioned by the Ministry of Health. Retrieved from             https://www.health.govt.nz/system/files/documents/pages/final_ey_report_-            _review_of_deceased_organ_donation__-_21_march_2016.pdf

Fridh, I. (2014). Caring for the dying patient in the ICU: the past, the present and the future.         Intensive & critical care nursing, 30(6), 306-11.

Germov, J. (2014). A second opinion: An introduction to health sociology (5^th ed.). Melbourne,    Australia: Oxford University Press.

 

Health Practitioners Competence Assurance Act. (2003). Retrieved from           http://www.legislation.govt.nz/act/public/2003/0048/latest/DLM203320.html?            search=sw_096be8ed8166e49d_cultural_25_se&p=1&sr=0

Horton, K., Tschudin, V., & Forget, A. (2007). The value of nursing: A literature review. Nursing ethics, 14(6), 716-740.

Hunt, T. (2010). Farewelling body parts would help Maori donors. Retrieved from

            http://www.stuff.co.nz/national/politics/3563310/Farewelling-body-parts-would-help-Maori-            donors

Kai Tiaki Nursing New Zealand. (2016). Absence of cultural considerations 'unjust and unfair'    22(7). Wellington: Kai Tiaki Nursing New Zealand.

Koenig, B.A., & Gates-Williams, J: Understanding cultural difference in caring for dying patients.             Western Journal of Medicine, 163(3), 244-249.

Leininger, M. (1991). Culture care diversity and universality: A theory of nursing. New York:

National League for Nursing.

McCormack, B., &McCance, T. (2006). Developing a conceptual framework for person-centered             nursing. Journal of Advanced Nursing, 56(5), 472-479.

McNamara, B. (2004). Good enough death: autonomy and choice in Australian palliative

            care. Social Science & Medicine, 58(5), 929-938.

Mead, S. (2016). Tikanga Māori: Living by Māori values. Wellington: Huia Publishers.

Ministry of Health. (2016). Increasing rates of deceased organ donation: Consultation document.             Wellington: Ministry of Health.

Ministry of Health. (2016b). Discussion Paper: Ethnic, cultural and religious differences in         relation to deceased organ donation. Wellington: Ministry of Health.

Ministry of Health. (2016c). Donation rates and trends in New Zealand and the potential scope to             increase deceased donation. Wellington: Ministry of Health.

Moeke-Maxwell, T. (2014). What whānau need at the end of life. Nursing New Zealand, 20(4), 12-          14.

National Clinical Taskforce on Organ and Tissue Donation. (2008). National Clinical Taskforce on             Organ and Tissue Donation final report: Think nationally, act locally. Retrieved from             http://pandora.nla.gov.au/pan/82729/200803271318/www.health.gov.au/internet

            /main/publishing.nsf/Content/19CD4D9197499048CA25732B00390E92/$File/Volume    %201.pdf

New Zealand Nurses Organisation. (2010). Code of ethics. Wellington, New Zealand: New Zealand             Nurses Organisation.

Ngata, P. (2005) Death, dying and grief. In M. Schwass (Ed.), Last words: Approaches to death in           New Zealand's cultures and faiths (pp. 29-41). Wellington: Bridget Williams Books

Nursing Council of New Zealand. (2011). Guidelines for cultural safety, the Treaty of Waitangi and             Maori health in nursing education and practice. Wellington: Nursing Council of New       Zealand.

Organ Donation New Zealand. (2017). Organ donation annual report 2017. Retrieved from             https://www.donor.co.nz/media-centre/annual-report-2017/

Pickersgill, F., & Dean, e. (2011). Organ donation rate raised by dedicated nurse-led service.        Emergency nurse, 19(3), 7.

Scheunemann, L.P., Arnold, R.M., & White, D.B. (2012). The facilitated values history: Helping surrogates make authentic decisions for incapacitated patients with advanced illness. American Journal of Respiratory and Critical Care Medicine, 186(6), 480-6.

Setta, S., & Shemie, S. (2015). An explanation and analysis of how world religions formulate their             ethical decisions on withdrawing treatment and determining death. Philosophy, ethics and             humanities in medicine, 10, 6. Retrieved from           http://dx.doi.org.op.idm.oclc.org/10.1186/s13010-015-0025-x

Shaw, R. (2010). Organ donation in Aotearoa/New Zealand: Cultural phenomenology and moral  humility. Body & Society, 16(3), 127-147.

Sorensen, R., Iedema, R. (2007). Advocacy at end-of-life research design: An ethnographic study of        an ICU. International Journal of Nursing Studies 44:1343-53.

Statistics New Zealand. (2013). http://archive.stats.govt.nz/Census/2013-census/profile-and-        summary-reports/quickstats-culture-identity/religion.aspx

Steinhauser, K., Christakis, N., Clipp, E, McNeilly, M., McIntyre, L., & Tulsky, J. (2000). Factors             considered important at the end of life by patients, family, physicians, and other care         providers. Journal of the American Medical Association, 284(19), 2476-2482.

Te Puni Kōkiri/Ministry of Maori Development. (1999). Hauora o te Tinana me ōna Tikanga: A guide for the removal, retention, return and disposal of Māori body parts and organ        donation: Service providers. Wellington: Ministry of Māori Development.

Walker, T., Signal, L., Marie Russell, Kirsten Smiler, Rawiri Tuhiwai-Ruru, Otaki Community    Health Centre, et al. (2008). The road we travel: Maori experience of cancer. New Zealand           Medical Journal, 121(1279), 27-35.

Webb, R. and Shaw, R. (2011). Whanau, whakapapa and identity in experiences of organ donation           and transplantation. Sites: A Journal of Social Anthropology & Cultural Studies, 8(1), 40-58.

Whitehead, D. (2013). Identifying research ideas, questions, statement & hypotheses. In Z.           Schineider, D. Whitehead, G. LoBionda-Wood, & J. Haber (Eds.). Nursing and midwifery       research methods and appraisal for evidence-based practice (4th ed., p. 57-76) Sydney,    Australia: Mosby/Elsevier.

Word Health Organisation. (2009). Global glossary of terms and definitions on donation and             transplantation. Geneva: World Health Organisation.