“My feelings and my thoughts are my lived experience, not the numbers they show me on a piece of paper”: Indigenous experiences of liver transplantation in British Columbia, Canada

ABSTRACT

Indigenous Peoples in Canada face healthcare inequities impacting access to solid organ transplantation. The experiences of Indigenous patients during the liver transplant process, and how transplant professionals perceive challenges faced by Indigenous Peoples, has not been studied. Thirteen semi-structured qualitative interviews were conducted via telehealth with Indigenous liver transplant patients (n = 7) and transplant care providers (n = 6) across British Columbia, Canada between April 2021—May 2022. Themes were identified to inform clinical approaches and transplant care planning and validated by Indigenous health experts. Among patient participants: transplants occurred between 1992–2020; all were women; and the mean age at the time of interview was 60 years. Among transplant care provider participants: roles included nursing, social work, and surgery; 83% were women; and the median number of years in transplant care was ten. Three broad themes were identified: Indigenous strengths and resources, systemic and structural barriers, and inconsistent care and cultural safety across health professions impact Indigenous patient care during liver transplantation. This study contributes insights into systemic barriers and Indigenous resilience in the liver transplant journey. Dismantling structural barriers to early linkage to care is needed, and training for transplant clinicians on Indigenous histories, cultural protocols, and cultural safety is strongly recommended.

KEYWORDS:

• Liver transplant
• transplant surgery
• transplant equity
• solid organ transplant
• Indigenous health
• health services
• healthcare equity

Background

Indigenous Peoples in Canada have strong and established systems of wellness among families and communities to support health and healing from a holistic perspective, which have been relied upon since time immemorial. Nevertheless, Indigenous Peoples experience inequities in healthcare access due to historic and ongoing colonial systems and structures of oppression [1]. Resulting health challenges from healthcare inequities include acute and chronic disease and may require consideration for solid organ transplantation including liver, kidney, heart, and lung. Liver transplantation is an intensive surgical treatment for end stage liver disease (ESLD) arising from multiple liver disease types including acute and chronic hepatitis, cancers of the liver and bile duct, metabolic diseases, alcohol-related liver disease, cirrhosis, and autoimmune diseases [2,3].

In British Columbia, Indigenous Peoples have higher rates of Primary Biliary Cholangitis (PBC), autoimmune hepatitis (AIH), and other autoimmune liver diseases, with significantly advanced disease presentation and worse long-term outcomes requiring transplantation [4–6]. While studies that focus on liver transplantation among Indigenous Peoples are limited, some research in Canada has demonstrated differences in access to liver transplantation and referral aetiologies among minoritized populations, including Indigenous Peoples. First Nations patients in Canada are more likely to present with more advanced disease, fewer sources of support, and have worse treatment outcomes [5]. Moreover, Indigenous Peoples referred for transplantation in British Columbia are most likely to present with ESLD from autoimmune disorders, and have the lowest rate of liver transplantation, and highest mortality rate while on the waitlist [4]. For any patient, including Indigenous patients, with ESLD, a liver transplant is a matter of life or death; uncovering the root causes of this inequity is of urgent importance.

Experiences of Indigenous liver transplant patients and how transplant professionals perceive and adapt to health equity challenges faced by Indigenous Peoples, has not been studied. Therefore, this exploratory qualitative study aims to understand the facilitators and barriers faced by Indigenous Peoples throughout the liver transplant process from the perspectives of Indigenous patients who have undergone liver transplantation, and those of interdisciplinary care providers on the liver transplant team. This study aims to inform the development of a more equitable approach to liver transplantation among Indigenous patients.

Studies investigating solid organ transplant access among Indigenous Peoples are limited and mostly focus on kidney transplantation. Canadian researchers found that disparities in transplantation between Indigenous and non-Indigenous patients living in Alberta occurred after the referral period, suggesting a major barrier in the process of determining eligibility for the kidney transplant waitlist [7]. Multiple review studies have found that Indigenous Peoples in Canada, New Zealand, Australia, and the United States are less likely to receive effective treatment for kidney disease such as transplantation [8,9]. Results from a study in New Mexico, USA showed a significantly longer time to waitlisting for Native Americans with kidney disease from diabetes or hypertension [10]. Similarly, a renal transplant study using the Australia and New Zealand Dialysis and Transplant (ANZDATA) Registry found that Indigenous patients in Aotearoa New Zealand and Australia were less likely to be added to the kidney transplant waitlist than non-Indigenous patients [11]. Another Australian study on waitlisting and access to kidney transplantation found that being Indigenous, a woman, or living in rural and remote regions was significantly associated with a lower likelihood of waitlisting for kidney transplant [12]. In another kidney transplant study examining the disparity in access to living donors for Aboriginal patients in Australia, researchers found that while most potential donors for non-Aboriginal recipients would be excluded for medical reasons such as hypertension or diabetes, potential donors to Aboriginal recipients were significantly more likely to be excluded for nonmedical reasons, most due to loss of contact [13]. In addition to a relative paucity of studies that focus on the liver, solid organ transplantation equity research tends to focus on disparities in referral, waitlisting, and outcomes, with little inquiry into the foundational factors such as systemic and structural racism creating and perpetuating these disparities.

Pervasive stereotyping and racism in the healthcare system directly and indirectly contributes to Indigenous Peoples having lower access to health services, compounding additional financial and geographical barriers many Indigenous Peoples face when seeking healthcare services [1,14–19]. Indigenous Peoples in Canada thus experience poorer health outcomes, including increased rates of chronic liver diseases compared to non-Indigenous people. The experiences of Indigenous patients referred for solid organ transplant have been studied to a limited extent from a qualitative perspective. A systematic review of qualitative research on the experiences of Indigenous patients during the kidney transplant journey found that patients cared deeply about access to transplantation for not just themselves, but for others in their community. Indigenous patients experienced significant exclusion from decision-making, and culturally unsafe care, such as being denied access to ceremony as part of their care [19].

Methods

Theoretical framework

The theoretical scaffolding for this study was derived from Indigenous perspectives on health and wellness [20], evidence of the pervasive cycles of stigma, Indigenous-specific racism, and discrimination in Canadian health care systems [1], and Indigenous-led scholarship on cultural safety and humility in health care [21]. It was also informed by Indigenous knowledge and perspectives on liver health, including the liver’s “sacred yet fragile” role in wholistic wellbeing and traditional medicines, such as dandelion and milk thistle, that support the liver health [22]. Together, these perspectives helped to ground the work with the aims of identifying systemic barriers to liver transplant while emphasising Indigenous strength and resilience to survive and thrive the liver transplant journey.

In addition, this work was informed by important clinical considerations including the complex and often strict eligibility requirements for patients to be considered suitable for liver transplant that improve their chances of surviving both the operation and post-operative period. Requirements in British Columbia are similar to all transplant programs in Canada which include both clinical and non-clinical indications and contraindications. Clinical contraindications include but are not limited to extrahepatic malignancy, hepatocellular cancers outside of an accepted size or number, active infection, significant cardiopulmonary disease, and advanced age. Non-clinical issues are assessed by educated allied health care professionals including social workers, addictions specialists, psychologists, and dietitians. Non-clinical contraindications may include lack of social support, a high likelihood of active alcohol or substance use post-transplant, and non-adherence to medications. This area of work has broadened over the decades since liver transplantation became accepted and is evolving as the medical technology, as well as the understanding of how social determinants of health affect post-transplant survival, evolve.

Study setting and data collection

Liver transplantation is a relatively rare and arduous medical procedure, with long waitlists and high rates of death while waiting for a suitable donor [23]. This exploratory qualitative study took place in British Columbia within a rapidly expanding provincial liver transplantation program where, on average, 35 to 40 patients per year received a liver transplant in the 1990s to 2010s, growing to approximately 100 patients per year in the 2020 era. For this reason, purposive sampling was used to invite Indigenous patients and care providers to participate in the study between April 2021-May 2022. Sample size was restricted to the number of care providers on the liver transplant team, and the relatively small number of patients who met the eligibility criteria.

Patient participants who self-identified as Indigenous (First Nations, Métis, or Inuit) and who had received a liver transplant were eligible to participate in the study. One clinician (last author, E.Y.) identified eligible patients by reviewing client files where demographic information including Indigenous self-identification is stored. The clinician contacted eligible patients to ask if they would be interested in having a telephone or online conversation about their liver transplant experience with an Indigenous researcher (first author, C.C.M.). Through this process it became clear that some eligible participants were experiencing health challenges (some related to their liver health and general health and others to the COVID-19 pandemic) that precluded them from participating. Among the 16 invited, 10 agreed to participate and 7 were successfully enrolled into the study. Informed consent was obtained by emailing or mailing a consent form to the participants prior to the interview. Indigenous liver transplant participants were reminded throughout the interview of their right to refuse to answer any questions or to have parts of their story not transcribed. A semi-structured interview guide was developed by first and second author (C.C.M. and M.P.) in consultation with subject area experts (E.Y., T.H., N.C.) and an Indigenous Elder (R.A.) and were designed to explore experiences before, during and after the liver transplant process including challenges and barriers and sources of strength and resilience. Interviews lasted between 41 and 105 minutes and were transcribed verbatim. Indigenous liver transplant participants received cash honoraria as thanks for their time and contributions. Saturation, when interviews are not generating new information, was reached after interviewing seven participants.

Six liver transplant care providers agreed to an interview between April 2021-May 2022. Participants were identified through investigators’ professional networks and sent an email requesting participation. Providers who responded were contacted by a non-Indigenous researcher (M.E.P.) to set up an online interview and complete their informed written consent. Topic guides for providers covered: scope of practice and protocols for establishing patient eligibility for liver transplant and challenges faced by Indigenous patients in the transplantation process. These interviews lasted between 35 and 68 minutes and were transcribed verbatim. Providers were offered a coffee shop gift card as thanks for their time and contributions. Saturation was reached among care providers after representatives from different aspects of patient care were interviewed.

Data analysis

Interpretive description (ID) and thematic analysis were used to describe participants’ experiences with and perspectives on liver transplantation and capture thematic patterns. Because ID is an inductive approach, researchers were supported to apply existing knowledge and real-world experiences to findings. Audio recordings were transcribed verbatim immediately after the interviews, so researchers could listen to the recordings, make corrections, and reflect on them. Two authors (C.C.M. and M.E.P.) grouped transcripts by patient and provider and read each multiple times to achieve immersion into the data and allowing for development of concepts. Next, they conducted a first round of transcript review and initial “binning” of concepts [24], involving the loose categorisation of data by concept, for respective participant groups, and then switched. The authors arranged and rearranged initial concepts until agreement was reached on broad, overarching themes that captured what participants experienced and the meaning of experiences and perspectives. The themes were then reviewed and refined with co-authors until consensus was reached. To ensure the validity of the findings, themes and related recommendations were validated by Indigenous health experts prior to contextualisation. Analysis was supported by Microsoft Excel and NVivo software.

Ethical considerations

This study was approved by the UBC Behavioural Research Ethics Board (Ethics ID: H20–03548) and adhered to the principles outlined in the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Informed consent was obtained from all study participants prior to the commencement of the interviews.

Results

Thirteen semi-structured qualitative interviews were conducted with Indigenous patients (n = 7) and transplant care providers (n = 6) across British Columbia, Canada. Among liver transplant patient participants: transplants had occurred between 1992–2020; all were women; and the mean age at the time of their interview was 60 years. Among transplant care provider participants, roles included nursing, social work, and surgery; 83% were women; and the median number of years in transplant care was ten.

Three broad themes were identified, along with subthemes organised by patient and provider perspectives, from systemic to interpersonal levels, related to barriers and facilitators in care: 1) Indigenous strengths and resources are required to survive a long health and wellness journey; 2) Systemic and structural barriers in healthcare for Indigenous Peoples are amplified by the liver transplant process, and 3) Inconsistent care and cultural safety across health professions negatively impacts Indigenous patient care during liver transplantation.

Indigenous strengths and resources are required to survive a long health and wellness journey

Indigenous Peoples who successfully complete the liver transplant journey do so with strong familial, cultural, and financial supports. Patients included in this study expressed the necessity for a robust support system to undergo the liver transplant process. Patients described severe, debilitating illness and, at times, amnesia: “[family] did come and see me twice while I was in the hospital and, uh, I don’t remember a couple of visits, like, of, my brother and his family came over and, you know, I have no memory of that”. ESLD patients require full-time care support for themselves, and for any children or family members in their care. Patients described their rapid decline in health: “I knew quite a while before that I had PBC. I just, I was in stage 1 and then all of a sudden, I was in stage 4, so it escalated quite quickly”.

Strong support network

The rapid progression of liver disease complicates logistics for organising family support and full-time care, which is critical to undergo liver transplantation:

I think people who don’t have a strong network, I mean, as an example, my first cousin, her main caregiver was her partner, and he is so burnt out. Um, her health is still poor, but you can’t just have it be one person be your prominent, your primary caregiver. You’re going to need more people than that. If you can recruit people to be on your team, recruit them because you’re going to need them. Especially, um, going through the transplant and post. Indigenous transplant recipient

Indigenous transplant patients relied heavily on their families for support throughout the transplant process. All stages of the liver transplant process from diagnosis to post-operative recovery require full-time support for themselves, and for any children or family members in their own care: “I just kept getting sicker and sicker. And they, they thought it would get better, but it didn’t. Right. So having a little baby at the time. It was terrifying. But also, he pulled me through this”. Patients were not only in need of a strong support network but were sometimes part of that network for others while enduring serious illness.

Patients with dependents expressed that without family support in place, it would have been impossible to take significant time away from home. In addition to stepping into the patients’ caregiving roles, family members often played a key role in advocating for the patient and helping them navigate the healthcare system. Due to these constraints, one patient who lives far from community and extended family support spoke of the difficulties of having a young child and partner, with no other immediate family nearby. Her partner had to take over full-time care of their children, leaving her in hospital without family support for extended periods of time: “I was alone quite a bit. I was terrified. I was quite ill”.

Culture as a source of strength

Cultural and spiritual support, such as traditional healing practices and ceremonies, were important for many patients. As one woman described, “it wasn’t only a medical procedure. It was a spiritual and a cultural experience for me”. In settings dominated by western medicine and non-Indigenous practitioners, it is especially important for Indigenous patients to have access to cultural and spiritual resources, spaces, and sources of support. Sometimes support was available in the hospital:

I met the Elder, [name], um, once and she did a wonderful little ceremony with me. Um, and the, um, the other Elder, I mean, the cultural coordinator that came, he, he did a, um, an eagle brush off of me and it was his own eagle feathers and stuff and it was just such a, a release. A relief. Um, you know, ‘cause I wasn’t just there any, you know, I wasn’t alone. Indigenous transplant recipient

For others, that spiritual support came in the form of family ceremony and prayer from afar: “You know, like … culturally, um, really it was just, you know, having the sweat lodges done for me and the different people, I had the whole world praying for me”. And sometimes spiritual support from family happened in the hospital room:

I was in the hospital. I was really, really bad. I couldn’t move. I was just laying in bed and trying to breathe and trying to get up. And about a week later, about a week or so later, um, actually my, my brother and his wife, like, are very traditional spiritual people and so we practice some medicine and, and, um, my brother and his wife came to the hospital and did a ceremony for me to get better. Indigenous transplant recipient

Active participation in ceremony is central to Indigenous health and wellbeing. For one patient on Vancouver Island, this involved participating in sweat ceremonies with the support of her relative after a major health incident:

My late auntie, after I hemorrhaged, she says phone me, and she says, you ask your doctor if you can do a sweat lodge. And I said, oh, I’ve never done that, auntie. She said, well, we’re going to see what happens, okay? If it’s okay with your doctor. So, when I talked to [doctor] about it, she, um, she said if you think you can manage it, you, you go ahead and do whatever your auntie wants you to do. And so … she did about five-four or five sweat lodges. Just for me. She had two medicine men. Indigenous transplant recipient

Critical to this example was the patient’s western care provider supporting the integration of traditional medicine in the form of sweat-lodges into her program of care and trusting that the patient knows her needs and abilities best.

Meaningful connections with healthcare providers

Undergoing a life-saving procedure requires patients placing all their trust in the care team. Relationality is a core principle for all Indigenous cultural value systems [25,26], and positive, communicative relationships with the care team are paramount to ensuring patients feel safe throughout their experience:

I have a fabulous nurse at the, um, [local] health centre. And I believe, I totally believe that if it wasn’t for their persistence, I wouldn’t be where I am today. I wouldn’t have been pushed through the way that I am, through the medical system. Um, Doctor, or, um, [name] she’s absolutely prominent in [First Nation] with, um, people who have PBC. So, she’s a prominent, um, people, that’s who I send people to. Because people talk to me about transplantation and so I send people to [her]. I was like, [she]’s the one you need to talk to. Indigenous transplant recipient

Multiple providers in this study shared the importance of taking the extra time to build rapport with patients and facilitate connections with different providers and family members in home communities, to build a more robust support network:

And again, usually I’ll talk to patients about what’s required and then oftentimes, I’ve done like family meetings in the past and connecting with like nurses in different communities. So really trying to understand kind of what that support looks like in the community as well. So, and then also talking about like, the fact that they are down here out of their, potentially out of their community with a caregiver and, and yeah, like what that means to be down here without your, your supports for that time. Right? And so, I do a lot of talking around that stuff too. Transplant care provider

Resilience

It was clear among participants that Indigenous patients who are successfully able to navigate the health system, receive and recover from liver transplantation display a high degree of resilience. Resilience is comprised of many parts, and manifests in different ways; for multiple patients, resilience manifests as humour: “I said it to a million of my medical people that my sense of humour about everything that went on with me right from the get-go has brought me so far. To be able to find the humour in the stuff that went on with me”.

For one patient, who received a liver transplant when she was 37 years old, early exposure to culture despite harder circumstances in her childhood home created a foundation upon which she would later build her recovery from substance use and enable her liver transplant journey:

So, I saw both of my grandparents living in a traditional and healthy way and they would bring me to ceremony as well. So, I did hear the language, I was engaged with the Elders in the community. Uh, I participated in ceremony growing up. But it was like having two lives. There was the really rough life on the rez, and then there was the safety and cultural life with my grandparents. Indigenous transplant recipient

Systemic and structural barriers in healthcare for Indigenous Peoples are amplified by the liver transplant process

Colonialism has created and perpetuated structural barriers preventing many more Indigenous Peoples from being considered eligible for liver transplant: “The system is designed by white people for white people, I learned”. Multiple participants have a family history of liver disease resulting in either death or liver transplantation, and some even attribute the strength of their family support to their collective experience with liver disease, coupled with the historic and complex trauma known to so many Indigenous People:

I come from [community] where this condition [PBC] is for some reason rampant. And, like, I had a grand auntie who had it and she never touched alcohol or drugs in her whole life, and she died from it. From liver failure … so because my family is also so experienced in seeing people suffer from this liver condition, they, also there’s so much tragedy in Indigenous communities as it is. They, learning how to function and cope through trauma is, like, second nature for a lot of Indigenous People and that includes my family. So being responsive instead of reactive when I, uh, got extremely sick was just, they managed to, um, work together cohesively to be there. Transplant care provider

Structural barriers

Financial and administrative barriers were a significant issue for patients but support from family and community organisations helped them to overcome these challenges. As one participant shared: “There was always somebody there at the hospital. If, if not one, two people. But they had the financial means to do that as well. Most Native People don’t”. Others face geographic challenges and financial barriers, and must lean more into community support:

Like, just a trip to [nearest urban center] is something that I know a lot of families can’t afford who come from my tribe. And a lot of Indigenous People from my tribe have this liver condition. It’s like, I see posts on social media and they’ll be like, my, you know, my daughter has this liver condition and we need to travel to [nearest urban center] but we don’t have the money so we’re doing a fundraiser. And I’m like, how are you going to get through the rest of this liver failure and potential transplant if you can’t afford to go to [nearest urban center]? It’s a 45-minute drive. Indigenous transplant recipient

Challenges extend beyond financial barriers, as there were significant logistic and administrative barriers to accessing liver care and potential transplantation noted by all patients:

And then the paperwork too. Like … when I finally recovered, we have this box and it’s just stuffed with paperwork that my family had to do for medical purposes and financial purposes and making sure I had all of the insurance I needed. It was crazy and unfortunately due to lack of education, a lot of [Nation members] aren’t capable of doing all that paperwork. Indigenous transplant recipient

Eligibility criteria for the liver transplant waitlist include attending regularly scheduled appointments, which is a logistical challenge for Indigenous patients who do not live in Vancouver, BC:

I missed a couple of appointments, um, because of lack of rides, I couldn’t get there. And then a few times I had transportation from the Native Health people, patient navigators, I believe. And, um, the one driver made me late, you know, made me late and missed my appointment so I just didn’t bother with them anymore because they weren’t very supportive. And so I was taken off [the waitlist] and then I had a nurse that advocated for me and got me back on the list. And she helped me with getting there on time and stuff like that. Indigenous transplant recipient

Indigenous patient advocacy

Most patients and providers involved in this study felt strongly that Indigenous patient advocacy within the institution was critical for successful access to healthcare and treatment. Some felt this role was best served by family or community members, while others looked towards Indigenous Patient Navigators embedded within the health system. Most patients felt there were relatively few they could trust among those most involved in their care. One patient describes finding an advocate in only two doctors of the entire roster of care providers they encountered throughout their liver transplant experience: “I met my doctor, … from [hospital], and he started taking care of me. And he was the one who, um, suggested to, to get me a transplant. So, he was an advocate for me, and he saved my life. Only one, besides [other doctor]. So those are the heroes in my book”. Strong Indigenous patient advocacy can dramatically improve the outcomes and experiences of care:

I feel good about it because, um, I think I’ve been able to move through the whole process in a really good way. I think I was really well taken care of by the medical system and, um, I know some of our People, uh, our First Nation’s People aren’t well taken care of but they also don’t know how to ask for what they need of for what they want. And my family and my nurse were profound. “Make sure you ask ‘this’. Make sure you ask ‘this’.” So, I always had advocates acting for me. Um, my sisters were my voice and, uh, I think that having an advocate is paramount in the process. Somebody who can speak up for you when you can’t speak. Somebody who, um, can be your, um, your storyteller when, um, how rough you’ve been or what it is that you’re going through when you’re at home. Indigenous transplant recipient

Inconsistent care and cultural safety across health professions negatively impacts Indigenous patient care during the liver transplantation process

Providers interviewed for this study frequently dismissed aspects of patient care that fell outside of their professional roles, coping with an overwhelming workload by deflecting responsibility for Indigenous-specific patient needs:

If it’s anything medical and clinical, I can certainly help with that problem. But otherwise, what I’m hearing is a lot more social stuff. So, if the person, let’s just say, you know, they are low on funds, you know, then the social worker would either work with whichever band they come from, and what money that they can provide. Transplant care provider

Patients in this study felt that at times their care providers’ biomedical worldview created a sense of apathy towards their health concerns, and a narrow approach to assessing patient wellbeing: “My feelings and my thoughts are my lived experience, not the numbers they show me on a piece of paper. And with white male doctors, it’s always about the numbers on the piece of paper”.

Time constraints

An important factor brought up by both patients and providers in this study that influenced Indigenous patients’ care experiences was time constraints on providers, largely dictated by structural factors such as patient requirements, hospital policies, and provider practices. Providers in this study recognised the need for additional time and resources, such as more dedicated staff to travel regionally, to provide better care for Indigenous patients:

I mean, I think it would be nice to have, if there was more of us nurses to go around, we could go to individual community hospitals, you know, talk to the ICU, talk to the nurses. And just basically, tell us what we do, you know, and have that understanding. But there’s no time for that, you know. There’s only so much time in the day. Transplant care provider

To provide culturally safe care, providers are required to go above and beyond for Indigenous patients, rather than it be built into the requirements of the job. Some providers in this study were readily willing to put in the extra time required to provide better care for Indigenous patients: “I have a very good relationship with all of my Indigenous patients … you have to put in extra time and … communication, and things like that. Which I happily do”. Others did not share the view that the additional time was important to improving provider-patient relationships, and instead found the needs of Indigenous patients bothersome. One care provider shared frustration about the extra paperwork involved for Indigenous patients accessing funds to support travel from rural and remote reserves for treatment:

I don’t do very much, a lot of it, obviously. I mean, if I get the inquiries about that particular [Indigenous] person and say, hey, I need a [medical] letter. And it wasn’t just one time. It was constant. It was almost like, every week, we were getting a phone call from the, the hospital for the work [of writing a letter], because right now, like, [by] that time the patient was admitted. And getting a call from the in-charge nurse over there, getting a call from the social worker over there, or, and trying to communicate with us, what can we do? How can we get this letter? And we tell them the same message as always, then I would transfer it to our social worker and say, hey, you know, can you help me with this again, and again, we give them the same message and be like, it’s not gonna come from us, you need to really get the letter from your specialist, doctor, whoever told you that you need to stay and have the accommodation sorted out. Transplant care provider

Inefficiencies across the liver transplant team compound the barriers faced by Indigenous patients seeking care, and the responses from providers do not exemplify a patient-centred approach to solving problems. Despite recognising the additional needs of Indigenous patients, the same provider lacked awareness that the current one-size-fits-all approach does not work, adding, “So we, we treat everybody the same. But I feel like I think there is a lot of, like, there is a lot of time put into these people. And we do tell them the same consistent message every time”.

Educational gaps in Indigenous health

Among patient interviews, references to inappropriate repeated questioning about alcohol and drug use were common:

I kept saying no, I don’t use IV drugs. I don’t use any drugs. I have a baby, and I don’t drink, like I’m not a drinker. Like maybe a social here and there, but I’m not an alcoholic. But they kept asking me that. And then I was thinking, is it because I’m Native that they keep asking me this? Indigenous transplant recipient

This participant goes on to say that harmful stereotypes extended beyond the healthcare system as well: “And a lot of people you know, they, they, if they do know that you have a liver transplant, the first thing they think of course is oh, well, what did you do to bring that to yourself, right?”

We found that spiritual views on receiving an organ donation from another person posed important challenges for some Indigenous patients and their families upon joining the waitlist or receiving the call that there was an organ match:

Um, in the beginning, so if I backtrack just a little bit, my mom, um, she was an Elder so getting an organ transplant kind of, um, it’s against our culture because you’re putting somebody else’s, somebody else’s spirit into your body. And so, my mom was like, oh, no. And we had to really talk her through it. My sisters talked her through it and then finally she accepted that this is what’s going to happen. Indigenous transplant recipient

Cultural safety

Almost all providers in this study expressed the sentiment that they “treat everyone the same”. One provider reiterated throughout the interview that “just because they’re Indigenous, it doesn’t mean that they’re going to be treated differently”. The same provider deemphasized the importance of Indigenous-specific care needs, and dismissed Canada’s mistreatment of Indigenous Peoples: “I know that Indigenous issues are … the issue at hand, at the moment, right? You know? … I’m all for advocating for each ethnic group, right … but … I’m not trying to be insensitive, but it’s like, the humans are well known to do atrocious things to each other”.

As one provider alluded, this “equal treatment” deflects responsibility for any differential treatment many Indigenous People face when accessing healthcare, onto the patient:

If we deemed them not a candidate for whatever reason, it could be because they lack social support, or they … have non-compliance with things. It becomes personal for them, I think. You know, you hear it after the fact and say, you guys have been, you know, discriminating us just because we’re Indigenous, it’s not that at all, I think we treat everybody equally. We have the same, we, we deem them a non-candidate based on what we see. And whether or not you’re what white or black, if you’re non-compliant, you’re non-compliant … so, yeah, so I think it becomes a bit more subjective, like, it’s, you know, and they don’t see it like that, but then they take it personally, is what I’m just seeing. But we treat everybody the same. We, our process is the same, it doesn’t matter. Transplant care provider

Multiple providers in this study also shared that they did not believe they were capable of prejudice or perpetuating racist systems because they were not white, and experience racial discrimination themselves, as non-Indigenous people of colour.

Discussion

This early exploratory work suggests that even before Indigenous patients are referred for liver transplantation, there are distinctive cultural (e.g. Nation-specific traditions and ceremonies), historical (e.g. intergenerational trauma), and socioeconomic factors (e.g. cost of accessing care for rural and remote patients) that need to be considered to facilitate treatment of ESLD for Indigenous patients. Once patients are referred, these factors create significant ongoing challenges for Indigenous patients to follow-through on referral and pre- and post-operative care. To our knowledge, this study represents the first to ask Indigenous patients about their experiences undergoing liver transplantation; however, this is not the first study to investigate and report negative attitudes towards Indigenous patients in the healthcare system in British Columbia. A seminal report published in 2020 titled: “In Plain Sight: Addressing Indigenous-specific Racism and Discrimination in B.C. Health Care”, compiled incriminating evidence of racism at all levels of the health system:

Interpersonal racism contributes to less accessible and responsive health care. This is compounded by structural racism, including continued socio-economic inequities and the geographic reality of many Indigenous communities which were forced onto small Indian Act reserves. The result of these compounding factors is continued gaps in services and inequitable health outcomes [1

Shortly before data collection began for this study, all regional health authorities in British Columbia signed a collective agreement to uphold the recommendations contained within the In Plain Sight report [27]. The findings from the report shone a light on widespread discrimination of Indigenous patients in British Columbia’s healthcare system. To better understand the healthcare environment and systemic factors that influence an Indigenous patients’ journey undergoing liver transplantation, and to contextualise patient experiences in this study, we sought the perspectives of members of a liver transplant team. This enabled us to understand the liver transplant process and the system in which Indigenous patients navigate healthcare, and unearth care providers’ reflexivity, bias, and knowledge about Indigenous histories and healthcare needs.

ESLD requiring transplantation causes extreme illness, described by all patients in this study, and patients are at high risk of dying from comorbidities during the waiting period [4]. For Indigenous patients, the impact of this process on their health is compounded by additional colonial harms. Colonialism has created and perpetuated structural barriers preventing many more Indigenous Peoples with liver failure from being considered eligible for liver transplant. Systemic and structural barriers have created situations in which entire communities have a high prevalence of otherwise rare liver diseases [6], yet little or no access to appropriate, routine treatment.

For example, the cost to undergo liver transplantation highly depends on regional access to care. One of the most important, proximal economic and structural barriers to accessing healthcare for Indigenous Peoples is geography [15,18,28]. Indigenous patients are more likely to live further from major healthcare centres and are more likely to require travel and extended accommodations for surgery preparation and recovery [29]. Many patients are required to travel into urban healthcare centres from rural and remote communities to receive advanced treatments such as those required to diagnose and treat liver diseases [18,29]. Costs associated with routine appointments, travel, accommodation for family and social support, medical relocation, childcare for patients with children, extended time off work, and other hidden costs add up to make liver transplantation prohibitively expensive for many [18,30]. Across Canada, one in ten First Nations adults report requiring health care but being unable to access it, and patient ratings of the quality of care received is significantly lower in remote and rural communities compared to urban-living First Nations [14].

For urban Indigenous Peoples, the predominant barriers to accessing health services are racism, discrimination, and mistrust, while also experiencing localised transportation barriers and long wait times [31]. For all Indigenous Peoples regardless of where we live, these barriers are the result of systemic racism, “enacted through routine and societal systems, structures and institutions such as requirements, policies, legislation and practices that perpetuate and maintain avoidable and unfair inequalities across racial groups, including the use of profiling and stereotyping” [1]. Anti-Indigenous racism and a lack of cultural safety and humility are barriers for Indigenous Peoples who require timely care for liver disease and for establishing trusting relationships with care providers.

In this study we were only successful in recruiting Indigenous women to participate in patient interviews. It is possible that this reflects gender differences in disease risk, as First Nations ESLD patients in British Columbia are more likely to be women [4]. A more likely explanation, however, is that because Indigenous women face greater barriers to healthcare access than Indigenous men, liver disease in women progresses further without treatment, resulting in ESLD requiring more drastic treatment measures. Gender disparities have persisted for decades in healthcare and are considerably well documented in the heart and kidney transplantation literature. In the United States, women are less likely than men to be waitlisted for a heart transplant, more likely to die while waiting for a heart, and receive less aggressive treatment for heart disease [32,33]. Additionally, women are more likely than men to be living kidney donors, yet less likely to be a recipient, and less likely to complete the work-up process to be added to transplant waitlists [34]. Despite known disparities, sex and gender are considered in less than a quarter of studies represented in the transplantation literature [35]. For Indigenous women, sex and gender intersect with structural and systemic racism. The mistreatment of Indigenous women in the healthcare system in Canada has been well documented, yet seldom are actions taken to protect Indigenous women from harm [36].

From a cultural standpoint, a lack of awareness of cultural differences in health and wellness protocols can cause challenges for both Indigenous patients seeking care and healthcare workers providing care. Ceremonial practices, family involvement, cultural and spiritual beliefs surrounding medical procedures, and language use differs significantly between Indigenous worldviews and those of western biomedicine. Indigenous languages offer a more comprehensive, holistic, and active definition of the liver, and its vital role in our lives, and Indigenous knowledge keepers know that poor mental health affects the liver and its functionality in the body [25]. As some patients exemplified in this study, Indigenous humour and laughter are good medicine, essential to health and wellbeing [25,37]. Similarly, having family support and access to traditional foods are key facilitators of wellness for Indigenous patients; food is medicine [25]. Worryingly, such cultural awareness lacked in all provider interviews.

Providers shared significant time constraints and a lack of a patient-centred approach in delivering consistent quality care to their Indigenous patients. While it is important that care providers have a functioning system in which to operate to the best standards that meet the individual needs of each patient, much needs to be done at the health system level to facilitate change. For one, there is a lack of research done on Indigenous patient experience across medical fields, such as surgery and solid organ transplantation. Indigenous Peoples are often excluded from clinical trials and other research studies, which limits the understanding of how different treatments and interventions may work for them and is akin to “data genocide” [38]. Additionally, a lack of awareness and education about the true genocidal history of Canada perpetuates harmful stereotypes about Indigenous Peoples, such as the “drunk Indian” stereotype commonly used to problematise Indigenous People who seek healthcare services, especially for the liver [1,6].

This study found an urgent need for more Indigenous healthcare providers and for cultural safety and humility training for non-Indigenous providers. Cultural safety training helps to teach healthcare providers not only about the cultural and social history of Indigenous Peoples in what is now called Canada, but it provides the tools to reflect on one’s own practice and gain self-awareness during engagement with Indigenous patients. Providers frequently used statements of equality in our interviews to deflect responsibility for any negative encounters reported by patients. “We treat everyone the same” was a common blanket response to questions about equity which fails to recognise the difference between equity and equality in care. The frustrations felt by transplant care providers who did not want to work outside of their narrow clinical responsibilities centred on time constraints and a lack of administrative support. Going “above and beyond” our job descriptions is necessary to meet equity goals, by definition, to uplift people who are faced with sociohistorical and economic barriers to accessing healthcare. Yet, few take personal or professional responsibility for that effort. At best, practitioners do not stand in the way of equity, but neither do they actively uphold it, leaving equity goals up to the patient. The burden of overcoming additional colonial barriers faced by patients is thus placed on the patients and their families. The Elder supporting this study (R.A.) shared that she is frequently asked by patients for help with non-cultural logistics such as accessing funding support, transportation, and accommodations. Elders support patients through cultural and ceremonial practices; patient advocacy and logistic support should come from the transplant care team.

Limitations

For some participants, their transplant experience was in the 1990s, over 20 years prior to their interview. For these participants, their responses are likely affected by recall bias. Additionally, comparisons between patients who received their liver transplants more than 20 years apart are limited. Interviewing during the COVID-19 pandemic came with multiple challenges. First, it was difficult to secure interviews with all patients, and we were unable to secure male transplant patients, for reasons that are not known. It is likely that stressors and circumstances related to the pandemic and lockdown measures impacted prospective participants’ interest and capacity to participate in this study. There were far fewer male Indigenous transplant recipients than women, impacting our ability to recruit Indigenous men who received a liver transplant into this study. As previously mentioned, Indigenous women face inequities at various points along the transplant care journey for multiple solid organs, yet gender-based, intersectional interventions are underreported in the literature.

The participants and results of this study may not be representative of the experiences of Indigenous patients across Canada. Additionally, the perspectives of transplant care providers may not fully capture the experiences of Indigenous patients. To our knowledge, this study is the first to explore experiences of Indigenous liver transplant recipients and transplant care providers’ understanding of inequities uniquely experienced by Indigenous Peoples. Through this work, we hope to encourage more comprehensive research in an historically understudied area of health that is traditionally viewed from a strictly biomedical perspective.

Conclusion

In British Columbia, it is time to break the cycle of negative health and wellness impacts stemming from systemic and structural racism embedded in the healthcare system. This exploratory qualitative study found that systemic and structural barriers to liver transplantation deeply impact the eligibility, waitlisting, and overall experiences of Indigenous women requiring liver transplantation from across British Columbia, and highlights the importance of social, cultural, and economic support for success along the liver transplant journey. Without significant changes to healthcare support systems in the province, Indigenous Peoples will continue to experience barriers to care. Solutions to structural barriers within the health system are urgently needed, especially early linkage to care for Indigenous women, and training for transplant clinicians on Indigenous histories, cultural and spiritual values, complex and intergenerational trauma, and cultural safety is strongly recommended. It is our hope that this work may open the door to more in-depth research that could inform policy decisions and shift patient care in a positive direction across hospitals, health authorities, and ministries of health. All staff on liver transplant care teams in British Columbia should be required to read the In Plain Sight report (2020), and be prepared to uphold its recommendations in their day-to-day care for Indigenous patients. Leadership should 1) implement the recommendations from the In Plain Sight Report into liver program protocols, and 2) review team operations to provide appropriate administrative support to care providers so they can take an equitable, patient-centred approach to Indigenous patient care.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Supplementary Material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/22423982.2024.2359747

Additional information

Funding

This research was supported by an unrestricted research grant from Paladin Laboratories. This work was presented in preliminary form at the Liver Meeting of the American Association for the Study of Liver Disease, in Washington DC, USA in November 2022.