Cultural Competency and Diversity Among Hospice Palliative Care Volunteers

Abstract

This case study examines the current state of cultural competence in hospice and palliative care in the Greater Toronto Area (GTA). Because of changing demographic trends and ethnic minorities underutilizing hospice palliative care services, this research examined the current state of culturally competent care in a hospice setting, and the challenges to providing culturally competent care in a hospice in the GTA. A case study was conducted with a hospice and included in-depth interviews with 14 hospice volunteers. The findings reveal that volunteers encountered cultural clashes when their level of cultural competency was weak. Second, volunteers revealed there was a lack of adequate cultural competency training with their hospice, and finally, there was a lack of ethnic, cultural, and linguistic diversity among the hospice volunteers.

Keywords

cultural competency diversity hospice palliative care volunteers minorities

The growing diversity of Toronto necessitates that its health care system be culturally competent and responsive to each individual’s needs. Health care providers must become culturally competent in order to effectively, professionally, and sensitively deal with a variety of different cultures and to diagnose, recommend, and implement health care strategies that coincide with a clients’ cultural preferences. A proficiency in cultural competency is important for all health care providers at all levels of agencies, institutions, and disciplines. From doctors to nurses, social workers, volunteers, staff members, administration, nutritionists, home health care workers/aides, technicians, and morticians—everyone must take personal responsibility for ensuring their own level of cultural competency.¹ Cultural competency in health care is essentially about ensuring that people are open to, respectful and cognizant of the various cultural differences between people, and most importantly to be knowledgeable about these differences.^2–5 Cultural competency in health care is not a final destination for health care providers but is an ongoing reflexive journey encompassing a varied and complex initiative on both a personal and corporate level.⁶ Once proficiency is attained in one aspect of cultural competency, there will always be new cultures, new traditions, or skill sets that require learning or updating, so that the learning process never ceases. It is acknowledged that ethnicities and cultures cannot be so easily compartmentalized. There is recognition that people’s innate desires, wishes, hopes, and fears are more similar than they are dissimilar. People want to be loved and they wish for good health, death and dying scares people and most are generally afraid of pain and the unknown. However, cultural competency is simply a tool for hospice and palliative care workers to enhance their repertoire of care and compassion.

Toronto’s increasing visible minority populations, similar to those in major American metropolitan cities, bring unique challenges to the community in general and the health care sector specifically. The medical and health care services community must meet the growing demands of a diverse and multicultural, multilingual, and multifaith population. Canada accepts more immigrants per capita than any other nation, and Canada has a responsibility as laid out in the Canadian Multiculturalism Act⁷ to identify and remove barriers that negatively impact visible minorities.

Close to 10% of the current adult population are visible minorities and this⁸ is expected to double by 2016. Currently, 43% of Toronto’s population (1 051 125) reported themselves as being part of a visible minority, up from 37% (882 330) in 1996. The top 4 visible minority groups in Toronto were Chinese (10.6%), South Asian (10.3%), Black (8.3%), and Filipino population (3.5%). Currently, 49% of Toronto’s population was born outside of Canada and half of Toronto’s population have a mother tongue in a language other than English or French. The top 5 mother tongue languages spoken in 2006 were Chinese, Italian, Punjabi, Tagalog/Filipino, and Portuguese.⁸ The changing demographics of North America are one of the most important reasons for instituting cultural competence in health care organizations. With immigration increasing every year in both Canada and the United States, the health care system is dealing with patients that are culturally and linguistically different and “providing culturally competent care is no longer a luxury but a necessity.”⁹ In fact, by 2023, the racial and ethnic minority population in the United States will be the majority, with African Americans, American Indians, Alaska Natives, Asian Americans, Pacific Islanders, and Hispanic Americans accounting for 40% of the population.¹⁰

Many ethnic and racial minorities in both the United States and Canada tend to underutilize health care services, because of issues of cultural insensitivity. Cultural and linguistic competency is necessary for health care organizations for a plethora of reasons, namely to respond to current and future demographic changes; to eliminate differences in the health care services usage of minorities; and to ultimately improve the health care services people receive.¹¹ The significance and value of cultural competency escalates when dealing with hospice palliative care because of the sensitive and stressful nature involved in the process of death and dying. In particular, cultural competency is imperative in hospice care because of a paucity of research in the field of cultural competency and palliative care; the changing demographics of North America demand it; the underutilization of hospice palliative care services by ethnic minorities; and lastly, to diminish the fear and stigma associated with death and dying. Unfortunately, only 1% of palliative care research focuses on the actual experiences of dying, so the urgency to further research this area is apparent.¹²

As culture can influence someone’s heath decisions, it is incumbent upon health care practitioners to be as culturally competent as possible when dealing with a diverse population. Culture and health intersect in the most delicate of manners particularly with end-of-life-issues. Cultures vary in how they perceive illnesses, medication, the role of physicians, hospitals, and their views on palliative care treatment. The health care system must be able to handle the ethnic and cultural diversity of the community by ensuring that minorities have equal access to end-of-life health care services. The main objective of this research was to analyze the current status of cultural competency in hospice and palliative care in the Greater Toronto Area (GTA). Currently, there is a lack of research on Canadian palliative care issues in general and hospice volunteers specifically. Although there are some studies analyzing cultural competency in health care, there are no studies that look at cultural competency in hospice care from a volunteer perspective in Canada. This research also builds on the strength of previous Canadian research on hospice and palliative care volunteers.^13–16

Methods

Background of Researcher

My interest in end-of-life care stems from my 10 years of experience as a hospice volunteer in the city of Toronto where I provided care to dying patients who had 6 months or less to live and who wished to die at home. I visited with patients once a week for a 4-hour shift in their homes and my duties included providing emotional and physical support. As a hospice volunteer with a decade of experience, I understand the complexities involved in the death and dying stages and that knowledge helped guide my research questions and my probing during the interview process.

Ethics

To research the hospice agency as a case study, I first obtained ethics clearance from the Hospice board of directors and then by the Research Ethics Board at the University of Waterloo. An initial summary of the research questions, the interview guide and questionnaire was provided to the Hospice beforehand. Each interview began with volunteer participants reading the information letter, detailing the goals of the research, the definition of cultural competency, and the ethical considerations involved. Each volunteer was advised they could decline to answer any question or stop the interview at any time. Once the volunteers read the information and signed the consent form, with their permission the interview was tape recorded and I also took notes while interviewing. Volunteers were reminded that their decision to participate in the study, or not, did not impact their status as a volunteer with the Hospice. No identifiers were used in this study, and the volunteer participants’ identities were coded as VT1, VT2, and VT3.

Materials and Procedure

This case study was conducted over a period of 7 months from January to July 2008. Interviews were conducted on a face-to-face basis, over the phone and through e-mail. Of the 14 interviews, 11 were conducted face-to-face, while 2 were done over the phone and 1 was conducted via e-mail. All the volunteer participants in this study currently work with the Hospice and provide support to patients who have a terminal illness, and wish to die in the comfort of their own home. Advertisements were placed in the monthly electronic newsletter circulated by the Hospice and went out to all 169 hospice volunteers. Posters were also placed in the hospice and I introduced the study during volunteer meetings and get-togethers. Interested participants contacted me through phone or e-mail and a subsequent day and time was set up to conduct the interview.

Adopting a case study approach, the methods used in this study included in-depth interviews and questionnaires with volunteer participants. The interview questions fell into the following categories: (1) sociodemographic questions, such as ethnicity, sex, marital status, income levels, employment, education, and language ability; (2) motivational questions such as, history of volunteering for the hospice and reasons for becoming a hospice volunteer; and (3) cultural competency questions such as, their knowledge of cultural competency, including their hospice training, their experiences working with clients of different ethnicities, languages, or culture (potential cultural clashes), and their recommendations on how cultural competency training could be improved in the hospice.

Participants

The participants included 14 hospice volunteers and 1 administrator from the Hospice. Among the volunteer participants, 2 were complementary care volunteers who provided patients with services such as massage therapy, reflexology, and reiki or music therapy for free. The main differences between these volunteers are that they did not visit clients for the average 4-hour shift once a week. Complementary care volunteers generally visit clients once a week for 1 to 2 hours at a time. “Volunteer” used in this context means both regular volunteers and complementary care volunteers. The volunteer participant’s age ranged from 31 to 75 years, the mean age was 52.1 years. The majority of the volunteers were women (79%), born in Canada (86%), were white/Caucasian with European decent (93%), were university graduates (79%), had average annual incomes of over $41 000 (64%), and were involved in hospice care volunteering for the first time (79%). Six volunteers (43%) spoke a language other than English, and only 2 volunteers (14%) spoke a language other than English and French. The main reason for joining the hospice as a volunteer ranged from experiences with the death of a loved one to a desire to educate themselves on the processes of death and dying which is similar to previous research.¹⁷ For example:

It’s based on my spiritual beliefs, I believe in giving back to the community. I hope that there is someone there for me and my family when the need arises. I guess it goes back to the golden rule—do unto others as you wish to have done to you, but for the Grace of God. (VT11)

For 11 of the 14 participants this was their first hospice palliative care volunteer job.

Results

Cultural Clashes Because of Weak Levels of Cultural Competency

When volunteers are not adequately trained in cultural competency, situations arise where there is a clash of cultures. A situation such as this can lead to awkwardness, confusion, and embarrassment for both the client/patient and the volunteer. Worse yet, it can offend or disrespect the client/patient in a way that negatively impacts their already fragile health. The role of volunteers in hospice care revolves around easing the pain and discomfort of patients by providing caring support during such an exhausting and difficult period of their lives. Therefore, it is of utmost importance that volunteers are properly and adequately trained in the complexities of cultural competence. When discussing these issues with the volunteers numerous examples were given where there was indeed a clash of cultures between client and volunteer. Once such example consisted of a Muslim family where the volunteer had been placed to take care of a 6-year-old boy whose older brother was dying. On one of her visits with the Muslim family the young boy initiated a discussion on God and religion. This is her story:

When the little boy asked me if I believed in God, well, there was a long pause, and then he just kept looking at me, with such wide eyes, waiting. “I love God!” he said emphatically. “I love God.” He was so excited about God and because his mother and aunt were both in the room, and a question like that obviously perks up people’s ears. Well, at first I tried to tell him that there are many different things that people believe in—but it wasn’t computing, and it wasn’t the answer he was looking for. So, finally I just said “yes,” even though it was a lie. I mean, I’m an atheist, but I felt I needed to say it to make him happy. You don’t want to provoke a philosophical debate on religion with a child. He was too young, especially when you’re in the home of a devout Muslim family, so I just went along with it. He just wanted to hear his own beliefs reaffirmed, he was only 6, so it was totally appropriate to do so. (VT1, p4-5)

In this case, despite the cultural differences the outcome was positive in the sense that the volunteer acknowledged the cultural difference and resolved the situation positively. But obviously this kind of positive resolution does not always happen. Language barriers are one of the biggest challenges or impediments to positive volunteer-client relationships. Issues have arisen surrounding linguistic competency when dealing with clients who speak little to no English, and volunteers need to rely on body language, or family members as interpreters. For example, “Language is the biggest barrier, it was a problem for me, because it’s difficult to communicate with someone when they don’t speak English and you just have to rely on body language.” (VT6, p1)

Language has been a barrier and made it difficult for me. My client was Japanese and spoke no English and as he progressively got worse, it became more difficult to try and read his body language. I had to rely on hand gesturing and I don’t think I was doing what he asked me to do, so that was troubling. (VT6, p2)

Many volunteers expressed a desire to be able to better communicate with their clients whose English skills were lacking.

It’s usually just a language issue. All of my clients have been able to speak English, even if it’s just poorly, but I wish I could speak their language, especially with the older family members, you know the grandmothers, they usually can’t speak English that well, and it would be nice to know a little bit more about the family, or what they were trying to say, to know what was going on with them. (VT8, p2)

Another example included a patient who had Alzheimer:

The lady I’m seeing at the moment is Bulgarian and she has Alzheimer’s and she doesn’t speak any English … I sense after a time that she’s wondering why I’m not understanding her, or maybe she thinks I’m disagreeing with her, or giving her attitude or something. I don’t want her to feel frustrated, so the longer I’m in her room, and the longer she tries to talk to me, she gets frustrated. So, I go out of the room, and then when I come back in, she’s happy all over again to see me. (VT3, p2)

Language barriers showcase the need for greater diversity of hospice volunteers themselves. It is a dilemma for hospice organizations, because it is difficult enough trying to recruit volunteers to work with people who are dying, but then to find volunteers who are ethnically, culturally, and linguistically diverse themselves can present a challenge.

Volunteers also discussed the need to be aware of their actions and behaviors while visiting clients from a different culture, so as not to accidentally upset or offend them. Volunteers had different techniques for trying to avoid cultural clashes, some chose to be reflective on the various cultures of illness, household, family dynamics, and ethnicity, while others chose to steer conversations away from controversial topics.

It made me more conscious about being aware, to stay on my toes, so to speak. Every person, every household has their own culture, and I have to be aware of that. It’s a couple of layers really—personal culture, household culture, ethnic culture, culture of dying, and working intimately with the family, trying to be aware of these different levels of cultures is important. (VT10, p1)

Volunteers expressed a real desire to be sensitive to their client’s needs, even when their client’s beliefs or needs contrasted with their own views; they try to always be respectful of their clients.

My outlook is about being present and aware, and this helps me when dealing with different cultures and when dealing with death and dying. I don’t go into defining anything with people. I try not to get into certain discussions. I’m there to do what is necessary. Basically, all people are the same. We all have similar habits and you have to be open to receiving whatever people are giving you. Even if I don’t agree, you have to remember that nothing is personal, we may not all believe in the same things, or live by the same rules, but it’s not personal. (VT12, p2).

Hospice volunteers are a unique brand of personalities who willingly enter into the arena of death and dying, whereas most people fear, deny, and ignore the inevitability of death. To be able to handle the stressful atmosphere of dying, sadness, and grief, where the only guarantee is death itself for the clients, requires that volunteers possess certain attributes such as flexibility, patience, acceptance, compassion, empathy, common sense, and good listening skills to be able to withstand the pressures.^18–20 Volunteers must often handle varying situations ranging from difficult and unpleasant clients who may resist or deny their impending death with hostility and anger, to unsettling family dynamics where family members may place unrealistic expectations on the volunteers.

Lack of Adequate Cultural Competency Training

The majority of the volunteer participants in this study stated they had not received any training on cultural competency or sensitivity; if they had, they could not remember what it entailed. In fact, the Hospice does provide a segment on cultural competency in their initial intensive 30-hour training for volunteers; obviously the training was too brief or not detailed enough for volunteers to remember. At the time of this study, cultural competency training is not a requirement of the Hospice Organization of Ontario (HOA). However, the results point to a need for greater training on cultural competency and even a need for re-fresher courses or take-home materials for volunteers. Responses to the initial question of whether volunteers were trained on cultural competency were very similar:

No, Not that I can remember. We may have, but I don’t really remember. Well, I can’t exactly remember what the training was, so I guess I needed more of it. It’s not very nice to say that I can’t remember what the training on cultural competency was. Maybe it’ll come to me during the interview. (VT3, p1)

Volunteers either responded that they could not remember the training or that there was no training in cultural competency. For instance, “No, there was no training,” (VT5, p1) “No, but if I did [have training], it was really brief, and not enough for it to stick in my mind, or nothing that I really remember,” (VT6, p1) “Yes, in the initial training, just a little bit, but I can’t remember it now. I don’t specifically remember what it was” (VT7, p1), “Yes, in the initial hospice training, but I don’t really remember the training ….” (VT8, p1)

There was an element in there called cultural competency, but I’m just trying to remember what it covered … I think that I should probably pull out my binder and remind myself what they trained us on, because I just can’t at the moment, I just don’t recall, I don’t remember it. What it actually covered, I can’t recall. Maybe it will come back to me while we’re talking. (VT2, p1)

Lack of Ethnic, Cultural, and Linguistic Diversity of Hospice Volunteers

At the time of this study, the hospice volunteer team was not ethnically, culturally, and linguistically diverse. Of the 14 volunteers interviewed for this study, 13 of them were white/Caucasian. The Hospice stated in their administrator interview that approximately 80% of their volunteers are white/Caucasian, but admitted it was a difficult aspect to assess, since they do not require their volunteers to self-identify, nor do they keep a track of the ethnicity or cultural backgrounds of their volunteers. At this particular hospice, approximately 20% of their volunteers are ethnic and visible minorities, and their volunteers are able to provide linguistic support in 13 different languages (English, Portuguese, Spanish, Cantonese and Mandarin Chinese, Korean, Polish, Hindi, French, Urdu, German, Farsi, and Greek). To date, the Hospice has not been able to provide data on the ethnic composition of their clientele base. One volunteer in the interview actually mentioned the lack of diversity of hospice volunteers as strange, “It would be nice to recruit more volunteers of different ethnic and cultural backgrounds.” (VT4, p6) Finding volunteers to work in the health care sector, for a 4-hour shift per week, for a minimum of 1 year is quite difficult in and of itself, but to find volunteers willing to work with people who are dying, and to find volunteers who are ethnically, culturally, and linguistically diverse who speak more than 1 language is a huge feat for any hospice to overcome. This is a challenge that must be taken on by hospices, and their recruitment techniques should target a more diverse and multilingual population, so that they are truly representative of their community.

Discussion

This study has shown that cultural competency is vital for health care agencies and providers and must be a core value for each institution. Minorities suffer cultural and linguistic barriers when trying to access competent end-of-life care. These barriers include health care staff and volunteers who are inadequately trained in cultural competency, who lack the linguistic abilities to communicate in languages other than English and French, and whose breadth of knowledge regarding different cultural beliefs and attitudes toward death and dying are weak, if not completely lacking. Future research will benefit from a conceptual framework that addresses race, culture, health, and end-of-life issues. People’s cultural values and beliefs differ greatly in terms of their desires for pain relief, denial or acceptance of their disease, how they perceive their illness, and the role of family members and friends. Ignoring cultural worldviews at the most vulnerable period of one’s life is unnecessary and only serves to heighten the stress and anxiety of the patients, their family, and the health care providers.

Providing culturally competent care for minorities during the end of life is one of the ways to reduce social exclusion and can boost the confidence and knowledge of health care providers, giving them the necessary skills and education to competently handle any situation, regardless of language, culture, or ethnicity.

Future Trends

There is a dearth of research on the implementation of culturally competent health care policies, specifically within hospice and palliative care. Future research must look at various levels of interactions between health care providers and recipients of care. Research is needed not only as a nursing perspective (which dominates the field), but from the viewpoint of doctors, volunteers, staff and administration members—but most importantly, research needs to focus on the patient’s vantage point. We need to hear from the people who will benefit most directly and immediately from culturally competent initiatives and policies. Having said that, there needs to be research detailing the consequences of implementing culturally competent measures within a health care agency or institution, and the success or failures of these measures.

Conclusion

The demographics of the GTA are dramatically changing as the city has the highest number of visible minorities in all the metropolitan areas in Canada.⁸ For the health care sector to be able to competently and respectfully handle the health care needs of visible minorities requires that health agencies and individuals begin the journey of becoming culturally competent. This necessitates that they have the proper skill sets, tools and knowledge to train, educate, and self-reflect on the processes of working with such a multicultural, multilingual, multiethnic, and multireligious population. Health care agencies must be representative of the populations they serve by practicing what they preach, and making sure that their own staff is culturally diverse, multilingual, and capable of dealing with a vast array of cultures and their individual health care needs.

Hospice palliative care research in cultural competency is imperative for 3 reasons; one, because of the current dearth of research in this field, especially a lack of Canadian data regarding hospice volunteers and cultural competency; second, because of the changing demographics of Canada in general, and Toronto specifically; and lastly, because ethnic minorities underutilize hospice palliative care services, and it is crucial that services become equally available and accessible to all cultures and ethnicities within the city of Toronto. Canada has a duty as laid out in the Canadian Multiculturalism Act to “preserve culture, reduce discrimination, enhance cultural awareness and understanding, and promote culturally sensitive institutional change.”²¹ This research is the first step in bridging that knowledge gap and creating sustainable future policy recommendations that will decrease the inequities minorities encounter when attempting to access hospice palliative care.

Footnotes

The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

The author received no financial support for the research, authorship, and/or publication of this article.

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