End-of-life issues for aboriginal patients

Respect

Several commentators identified the importance of family, community, and respectful interpersonal relationships to aboriginal culture.3,8,13,16 Browne’s in-depth interviews of 5 Cree-Ojibway key informants from northern Manitoba found that actively listening and accepting others’ decisions were important for successful interpersonal relationships.4 Brant, a Mohawk psychiatrist, identified the concept of non-interference in his opinion article.3 He suggested that many aboriginals believe that all people are entitled to make their own decisions. This high degree of respect for personal independence means that advising, persuading, or instructing is “undesirable behaviour.”3

Elders might be participants in decision making, as they are highly respected in aboriginal communities. They are valued for their wisdom and experience3 and might be quite knowledgeable about medicinal herbs and spiritual matters.32 This respect for elders and healers can lead aboriginal patients to accept medical advice from physicians without question, out of respect for their parallel role as healer.3

Traditional perspectives

Traditional medicine is often assumed to refer to land-based medicines and plants. Hart-Wasekeesikaw, an aboriginal nurse who did a qualitative research study involving interviews with 42 aboriginal patients, suggests it is probably best understood as a set of assumptions concerning the holistic nature of a person.10 Both physical and emotional health are seen to stem from balance between the mind, the body, and the spirit, as well as strong interpersonal relationships.8,15,24,32 This holistic view means that modern healing practices that focus purely on physical problems are often not immediately accepted by aboriginal patients, particularly elders. They might prefer to be treated by traditional healers, using healing circles, sweet grass, or other spiritual methods. Patients might also wish to involve elders in their care and treatment decisions.2,8,37 Kaufert and colleagues suggest that access to a traditional healer in a modern hospital is similar to access to a hospital chaplain.20

Garro encountered an aboriginal perspective that differentiates between “Anishinaabe sickness” and “white man’s sickness.”9 Anishinaabe sicknesses can be caused by such things as “onjine” (bad behaviour) or bad medicine, and can only be cured by medicine men, not by modern doctors. White man’s sicknesses, which did not exist until the Anishinaabe people were exposed to white men, require a physician who might be more adept at these treatments.19

Not all aboriginal patients want traditional healing.11,22 During the 44 interviews conducted by Hotson et al in northern Manitoba, “most community informants … did not identify the need for any ‘traditional’ services for those who are dying.”13 This topic therefore needs to be cautiously explored with aboriginal families, as those from a Christian tradition might take offence.34

Truth-telling

Jennings, McQuay, Ellerby et al, and Kaufert et al all discuss the concepts of truth-telling and maintenance of hope.8,16,19,20,26 Relatives of a terminally ill aboriginal patient might not want their loved one to know the seriousness of the medical condition, as positive thinking is thought to promote health. Discussing terminal illnesses or death can cause the patient to die more quickly. For this reason, some aboriginal patients might accept “uncertainty in prognosis or disease progression” more easily than nonaboriginal patients.8 Ellerby et al and Kaufert et al cite instances where this focus on hope led relatives to protect their sick loved ones by acting as proxy decision makers or by discouraging physicians or interpreters from delivering bad news.8,19,20

Use of interpreters

Some aboriginal people do not speak English and rely on interpreters in their health care. In 3 studies using observed interactions with follow-up interviews, Kaufert and colleagues discussed the particular skills interpreters should have.19,20,21 Owing to differences in values and beliefs surrounding medical care, interpreters require good understanding of patients’ cultures as well as their languages. Kaufert et al and Smylie et al explain the disadvantage of using a family member as an interpreter, despite the apparent convenience.19,21,37 Individual privacy concerns and end-of-life values might conflict between the patients and their family members. This can lead family member–interpreters to consciously or unconsciously alter the doctor’s message in order to deliver a message that they think their loved one would want to hear.19,21,37 In addition to invaluable cultural and language interpretation, experienced nonfamily interpreters might have links to traditional healers and other services of interest to patients or their families.17

Trust

Benoit and colleagues studied 36 aboriginal women living in Vancouver, BC, using participant observation, focus groups, and follow-up interviews.2 The women liked the informal nature of the services at their urban health centre. They preferred aboriginal staff and wanted more information available in areas of parenting and coping with family illness. They liked the fact that they did not have to give any personal medical information on their first visit. Once they had built trust with the staff, nurses, and physicians, then they could address their specific medical concerns.8 Kelly and Brown also found this importance of trust in their interviews with 10 Canadian physicians working with aboriginal patients.22 They learned that it often took years of working in the same community before patients really started to open up and discuss issues.

Similar comments were made in northern Quebec by women involved in a diabetes education program.7 They thought the group of researchers should have had more understanding of their Cree community before coming to teach them about gestational diabetes. They also thought more local people could have been involved in organizing the project.7

End-of-life decision making

Many authors said aboriginal patients strongly preferred immediate and extended family members to be involved in medical decision making.8,13,16,19,20,39 Reviews by Ellerby et al, Brant, Kaufert et al, and Jennings, as well as interviews by Hotson et al and Kelly and Brown, all demonstrated the centrality of family and community.^{3,8,13,16,19,20,22,} When it comes to end-of-life decision making, family members of many aboriginal patients attempt to balance keeping their loved ones informed with still allowing them to maintain hope.20,21

Several authors mentioned the difficulty obtaining advance directives from aboriginal patients.12,39 The formal structured approach used by many hospitals might be ineffective with aboriginal patients.12,18 Hepburn and Reed, as well as Westlake Van Winkle, recommend trying to determine patients’ wishes in a less formal manner.12,39

Kaufert et al and Kelly and Brown also suggested that language barriers, as well as cultural differences in behaviour, might impede a physician’s ability to assess the patient’s mental competence to make informed decisions.20,22

Family caregiving

Newbold reviewed the Aboriginal Peoples Survey of 1991 (N = 25 122) and learned that family or friends often care for disabled aboriginal patients, instead of involving external agencies.28 This might be due to the geographic remoteness of patients, financial barriers, or the personal importance of family. MacMillan et al had similar findings in 2003, analyzing the Ontario First Nations Regional Health Survey (N = 1094) compared with the National Population Health Survey (N = 4840).25 It is difficult to tell if this caregiving by family members is by choice or out of necessity.25 Most aboriginal patients would like to die at home13 but do not.31 Aboriginal northern Ontario community members (N = 216) cited inadequate resources, training, and time as contributing factors.31 Aboriginal patients in remote communities more commonly interact with nurses, social workers, and alternative health care providers than they do with family doctors. Aboriginal patients might, therefore, be more comfortable with nonphysician care providers.

Family involvement with the death of the patient

In the event patients are incapable of making their final wishes known and a substitute decision maker has not been appointed, health care providers might have to determine which family member acts as spokesperson. Hepburn and Reed found that a spokesperson often emerges without any formal intervention by caregivers.12

Some aboriginal people see death as a necessary part of the life cycle and are quite accepting.12,39 Terminally ill patients might feel that it is very important to say goodbye to loved ones before they pass away.31 This might relate to their belief in an afterlife and the importance of maintaining relationships with loved ones upon entering the spirit world.18,30

Once an aboriginal patient has passed away, there might be additional local cultural considerations. In aboriginal communities, news that someone has died is usually told simply, directly, and promptly.30 Views on the handling of the body vary by community and family. The review by Smylie et al presents several belief systems.37 It might be important for family and community members to be present at the time of death. The patient or family might request that the death take place in the home community. If this is not possible, the family might request to have the body returned to the community soon afterward. The family might ask to be directly involved in the preparation of the body, and some traditions even require that the body not be left alone until after burial or that the body be buried within 24 hours of death.26,37

The process of dying

Many traditional aboriginal cultures consider death to be very natural. For many aboriginal people, a “good death” is one where they meet death with dignity and composure.31 Dying this way implies a further experience of an afterlife.11 Focus groups in 10 northern Ontario communities further defined a “good death” as “during sleep, without pain, in a patient who had received proper care.”31

There are several accounts of aboriginal patients seeming to know when they will die. This can allow them to prepare themselves both physically and spiritually. Some people die while dressed in particular clothing which family members believe were specifically worn as preparation for their journey. This knowledge allows them to say goodbye to their loved ones, thereby maintaining their important positive relationships.30

Most authors point out that dying is a uniquely individual process, and care must be taken to ensure sensitivity toward the specific patient’s wishes.

Organ donation

Molzahn and associates conducted interviews with 14 members of the Coast Salish people in British Columbia regarding organ donation. They encountered a belief in the existence of spirits within each person: when aboriginal people die, they should be buried with a complete body and soul so that they are prepared for their next life.27 This concept was also discussed by Kaufert et al in their reviews, and by Verble et al in their study of data collected from routine organ donation meetings (N = 323).18,20,38 Molzahn et al also discussed the concept of spirit transfer: some of the participants believed that part of a donor’s spirit might be transferred to the recipient during an organ transplantation.27

These body-wholeness and spirit-transfer values might be issues for aboriginal patients contemplating organ donation. Molzahn et al mentioned the large number of aboriginal people awaiting transplantation and the low donation rate. The need for an intact body and complete spirit at burial might be met by performing a cleansing ceremony before the procedure.27

Injury is the leading cause of death for aboriginal people, most from motor vehicle accidents.14 Evidence from United States general population shows that minority ethnicity lowers donation rates across many cultures.36 Molzahn et al pointed out that many aboriginal people do support organ donation but lack relevant information.27 In the United States, Callender and colleagues found that a community-based minority research program in Washington, DC, increased organ donation rates over a 17-year period, addressing awareness and “ethnically similar messengers” with “culturally sensitive messages.”6 Even among the 14 interview participants of Molzanh and colleagues, there was considerable diversity of beliefs, and the authors acknowledged the paucity of Canadian research on barriers to and beliefs about organ donation in aboriginal communities.27

Grieving

The concept of grieving parallels culturally appropriate care. Aboriginal people express their grief in various ways. Some aboriginal cultures view outward expressions of emotion as inappropriate,20 and the apparent grieving period is often quite short.30 Some families hold sharing circles or other ceremonies to help with their emotional pain.20 A traditional healer is sometimes consulted to help bereaved families spiritually.26 Additional customs sometimes take place during the year following the death of a family member.11,30

Complications and barriers

Hotson et al interviewed 44 key informants including community residents, elders, northern physicians, and nurses.13 They identified some of the challenges to providing a high level of health care: geographic isolation, language barriers, and financial barriers. The remote nature of many reserves means less access to medical procedures and professionals, lack of inpatient facilities, lack of permanent nursing staff, and difficulty accessing medications.13 Physician turnover and inexperience can also play a role.28,35 Brown and Shultis found that nonaboriginal communities had more health care services than aboriginal communities of similar size and geographic remoteness.5

Physical distance might force patients to leave their families and communities and go to larger cities for medical treatment. Hospitalized patients often feel isolated and lonely without these supports,8,17,34 compounded by the unfamiliar atmosphere of a distant hospital.17 One author wondered if a history of “inadequate health care and broken treaties” might contribute to an undercurrent of suspicion of Western caregivers.39 Doctors’ and aboriginal patients’ communication styles often differ. Aboriginal patients might be comfortable with more silence than Western caregivers are.11,22,29