Advance Care Planning for Mechanical Ventilation: A Qualitative Study on Health-Care Providers’ Approaches to Cross-Cultural Care

Abstract

Advance care planning (ACP) is a method used for patients to express in advance their preferences for life-sustaining treatments at the end of life. With growing ethnocultural diversity in Canada, health-care providers are managing an increasing number of diverse beliefs and values that are commonly associated with preferences for intensive mechanical ventilation (MV) treatment at the end of life. This study aimed to identify and describe the approaches used by health-care providers to set advance care plans for MV with seriously ill patients from diverse ethnocultural backgrounds. Semistructured interviews were conducted with health-care providers from acute-care settings. Using a value-based approach in ACP was deemed an effective method of practice for managing and interpreting diverse beliefs and values that impact decisions for MV. However, personnel, organizational, and systemic barriers that exist continue to hinder the provision of ACP across cultures.

Keywords

advance directives culture older adults dying religion or spirituality

Introduction

End-of-life care decisions have become increasingly complex with advances in medical technologies that are allowing seriously ill patients to live longer, but this does not necessarily mean that treatment will restore health or improve quality of life. Patients in Canada today have the opportunity to consider, choose, or refuse life-sustaining treatments through the process of advance care planning (ACP; Canadian Hospice Palliative Care Association [CHPCA], 2012). Using a patient-centered approach to plan for end-of-life care can help those with serious illness approach death and dying in a way that they deem acceptable. With 1 in 10 Canadians expected to be over the age of 80 years by 2056 (Statistics Canada, 2010), there is a particular need for older adults to discuss preferences for end-of-life care in advance to prevent the unnecessary or unwanted use of considerable health resources.

Mechanical ventilation (MV) is the most used form of life-sustaining treatment at the end of life and most frequently the treatment withheld or withdrawn in anticipation of death (Cook et al., 2004). This resuscitative measure protects patients from respiratory failure by reducing the work involved with breathing and promoting optimal conditions for recovery. While the ethical issues raised in clinical decisions to withdraw or withhold life-sustaining treatment are similar across the trajectory of care contexts, the withdrawal of MV is distinct in that it leads to severe discomfort and dyspnea (difficulty breathing) and the process requires extensive medication to manage pain and symptoms (Rubenfeld, 2004).

It is the responsibility of the physician to discuss with the patient and family the severity of illness, underlying health conditions, and appropriate options for care. Unfortunately, these conversations occur infrequently and patient preferences for MV are often unknown upon hospitalization (Heyland et al., 2006). Unless treatment is deemed medically futile, or a specific order exists on the patient’s medical record, the default directive is often to initiate resuscitative treatment (Canadian Medical Association, 2013).

The ruling for the Rasouli case in October 2013 by the Supreme Court of Canada was a landmark decision that ruled that doctors cannot unilaterally choose to end life-sustaining services, and that they must first obtain consent from the patient’s family, or failing that, apply for permission from an authorized quasi-judicial body that addresses matters of consent under government legislation (Cuthbertson v. Rasouli, 2013). However, as manifested in the Rasouli case, how one views the world and makes sense of thoughts, behaviors, and events that transpire throughout the life cycle, such as illness and death, is dependent on one’s ethnocultural worldview.

Culture is one of the 12 key determinants of health, and individuals living in Canada have a cultural right to maintain their ethnic, linguistic, and religious identities (Public Health Agency of Canada, 2013). In fact, contrary to mainstream thought, Baker (2002) found that end-of-life decision-making and uptake of ACP was more dependent on culture and ethnicity than on variables such as age, socioeconomic status, and education. While there are a number of studies that suggest that the latter factors are the main drivers for decision-making at the end of life (Littrell, Diwan, & Bryant, 1996; Menec, Lix, Nowicki, & Ekuma, 2007; Resnick, Cowart, & Kubrin, 1998), emerging international research suggests that culture and ethnicity may have a unique influence on end-of-life decision-making that is independent of other variables (Baker, 2002; True et al., 2005).

Interestingly, research has repeatedly shown that, regardless of the specific ethnicity, ethnic minorities are less likely to engage in ACP compared with the majority population. The use of cultural or religious methods for coping has also been shown to be commonly associated with preferences for intensive care near death (Maciejewski et al., 2012; Phelps et al., 2009; True et al., 2005). Contrary to the views espoused from a Western bioethical viewpoint, patients and families who hold diverse beliefs and values for end-of-life care may deem the fundamental principles that form the foundation of ACP as foreign values. Research has shown that some ethnocultural groups view the idea of patient autonomy as disempowering and isolating, informed decision-making as violating the protective role of family decision-making, truth-telling as inducing the nocebo effect and with it the risk of a premature death, and taking control of the dying process as an offense to a plan that is dictated by God (Johnstone, 2012). As a result, health-care providers are encountering an increasing number of diverse beliefs and values that may impede their ability to provide quality end-of-life care (Mitchell, Gale, Matzo, McDonald, & Gadmer, 2002).

The use of effective cross-cultural communication and culturally competent skills among health-care providers supports the provision of individualized health-care plans that address physical, psychosocial, and spiritual needs of patients and families (Kagawa-Singer & Blackhall, 2001). Unfortunately, cross-cultural considerations in ACP have rarely been considered in public policy and legislative frameworks in countries such as Canada, Australia, United Kingdom, and United States, which are recognized for their linguistic and ethnocultural diversity (Johnstone & Kanitsaki, 2009).

The management of ethnocultural beliefs and values at the end of life is a significant indicator for the quality of care and quality of death that patients and families experience (CPHCA, 2012). Unfortunately, there is very limited research that explores facilitators and barriers with using current methods of ACP across ethnocultural populations. The objectives of this study were (a) to identify approaches used by health-care providers to engage in ACP for MV with patients and families from different ethnocultural backgrounds, (b) to understand barriers that may hinder health-care providers’ abilities to engage in ACP for MV across cultures, and (c) to explore approaches used to overcome the perceived barriers.

Methods

Research Approach

A qualitative exploratory descriptive research approach was used to describe, compare, classify, and conceptualize meaning-centered questions on end-of-life concepts that are not easily quantifiable (Patton, 2002). A semistructured interview guide that included open-ended questions and two clinical vignettes was developed with themes that moved along the knowledge-attitude-behavior continuum (Appendix). The clinical vignettes were designed to explore approaches used by health-care providers to elicit preferences for MV in cross-cultural scenarios frequently encountered at the end of life, as described in the literature and reinforced in the pilot study. For example:

In some ethnocultural and religious groups, there is a strong value for the sanctity of life or the idea that human life is sacred and should be preserved at all costs. During an ACP conversation, an older patient and family under your care express strong preferences for MV intubation, despite futility or minimal benefits of this treatment. Can you describe how you would work with the patient/family to set a care plan for MV in this scenario?

The interview guide was piloted with different types of health-care providers (physicians, nurses, respiratory therapists, and social workers) from various settings to ensure applicability of questions across disciplines. Results from the pilot test showed that non-physician roles and responsibilities in ACP varied across health settings and institutions, with the exception of nurses who significantly contributed to the generation and implementation of advance care plans. The inclusion criteria were therefore limited to English-speaking physicians and nurses in acute-care settings who engage in ACP for MV discussions. This study received ethical approval from four research ethics boards.

Recruitment and Data Collection

Qualitative research guidelines suggest that participant recruitment occur until data reaches saturation and no new themes emerge (Mason, 2010). Thematic saturation was reached in our study after the coding of eight interview transcripts (n = 8), at which point subsequent interviews no longer provided new insights or information and categories had been fully explored. A snowball sampling approach was used to recruit participants (physicians n = 4; nurses n = 4) with maximal phenomenal variation in dimensions of interest, including gender, age, ethnocultural diversity, and number of years of medical or nursing experience. A letter of invitation was sent via e-mail and a follow-up message was sent 2 weeks after initial contact. Data were collected by the principal investigator through an audio-recorded, face-to-face interview lasting approximately 60 minutes at the medical setting of the study participants.

Data Analysis

Themes that emerged from the narrative data were inductively coded and categorized by the principal investigator using content data analysis (Mayring, 2000). Due to a small data set and modest analysis needs, data analysis was completed traditionally by hand by the principal investigator using Microsoft Word and Microsoft Excel. Interview transcripts were analyzed using emergent codes and context coding units, such as words, sentences, and paragraphs, to identify themes, subthemes, and ideas through the process of open coding (Mayring, 2000). Inferences were then made by the principal investigator by establishing frequency counts and highlighting differences in approaches used under the different scopes of care.

To gain credibility and trustworthiness of study findings, the open-ended questions and clinical vignettes helped to verify meanings of experiences. Examination of emergent categories by the two coinvestigators also helped to enhance credibility and to reach consensus with the evolving design of the study. Field notes reflecting the interviewer’s thoughts, ideas, and feelings were also noted throughout the interview to bring awareness to any preconceptions or biases during analysis (Krefting, 1991).

Results

Characteristics of Participants

Twelve physicians and nurses were invited to participate in the study, and eight participants (female n = 4; male n = 4) were recruited from four acute-care hospitals within the Ottawa region (see Table 1). Two physicians and three nurses were recruited from the intensive care unit (ICU), one physician and one nurse were recruited from palliative care, and one physician worked in both ICU and palliative care. Some of the physicians also did rotations in the ambulatory clinic, long-term ventilation, emergency room, and operating room; one nurse consulted in psychiatry, ICU, emergency room, operating room, and family medicine.

Table 1.

Characteristics of Physician and Nurse Participants (N = 8).

	N (%)
Profession
Physicians	4 (50)
Nurses	4 (50)
Sex
Male	4 (50)
Female	4 (50)
Visible Minority
Yes	3 (37.5)
No	5 (62.5)
Mean number of years in practice [Minimum – Maximum]	11 [4–25]
Medical	10.5 [4–21]
Nursing	11.5 [5–25]
Participation in cultural competency training/workshops
Physicians	0 (0)
Nurses	2 (25)

All participants completed their medical or nursing training in Canada, with the exception of one nurse who studied in France. Participants varied in ethnocultural and religious backgrounds, and recalled providing care to at least three different heterogeneous ethnocultural groups, including but not limited to African, Eastern European, Middle Eastern, East Asian, First Nations, and Caribbean populations.

Three major themes emerged from the collected data: (a) goals of care across the illness continuum; (b) respecting beliefs, values, and wishes for care; and (c) cross-cultural support in ACP (see Tables 2 to 4). Methods of practice used within these themes, as well as the associated facilitators and barriers, are described in detail below.

Table 2.

Methods Used to Engage in ACP Across Cultures: Goals of Care Across the Illness Continuum.

Methods	Facilitators (F) or barriers (B)	Illustrative quotes
Exploring belief and value systems of patients and families	(F) Avoid generalizing beliefs/values to certain ethnic or religious groups (F) Cross-cultural input from healthcare team members (B) Limited knowledge on diverse ethnocultural perceptions and practices (B) Pressure for timely action (B) Difficult to have value-based discussions in tech-heavy environments	“If I were lucky enough to meet people early in their disease course, what I would be telling them is: ‘what brings meaning to your life, what are your values, what’s important you, what would be acceptable for you’, as opposed to ‘I never want a [nasogastric] tube’. You don’t know the circumstances of your future illness, it’s very difficult to pinpoint particular interventions and MV would fall into that.” (N1) “It’s not like I have a handbook, you know ‘what does a Buddhist believe’ - I don’t have any of that. It’s mostly on experience and dealing with colleagues and spiritual care workers and social workers. But I’m not really aware of it, so that would be really helpful.” (P4) “You can’t generalize certain principles from a previous experience that you may have had with a similar family. There are so many variables within the same cultures that your role is really to learn about what their perception is and what is bringing that sort of meaning and value in how they interpret MV.” (N1) “These discussions are extremely important but I think that they’re undervalued in ICU - it’s great when we’re doing our tasks, but we sort of see emotional support for the families and things secondary because we’re a very tech-heavy, machine-heavy, task-heavy environment.” (N3)
Finding common ground for setting care plans for MV	(F) Data, evidence and education to address misconceptions with MV (B) Generic resources may not meet diverse needs of ethnocultural groups	“The key thing is to gain an understanding of who you’re dealing with and why they think the way they do. Usually if you could have that understanding, you could establish some common ground for moving forward [in ACP].” (P3) “You have to keep bringing the object of reality back to them; an object of reality is data and evidence and in certain stages of illness, there’s certain prognostic scales you can use. And you need to talk about that realistically, openly, and honestly. That is a very real conversation that I don’t think we have with enough import, it’s often glossed over.” (P1)
Interpreting goals of care into care plans for MV	(F) Value-based approach facilitates decision-making for MV (F) Non-denominational chaplains and religious persons help to interpret cultural/religious principles (B) Difficult to interpret MV preferences in different medical scenarios	“What I’ve learned is you need to bring [patients/families] beyond these yes/no questions because they’re kind of false. That’s not the question that we’re asking. The question or statement usually is “Your loved one is dying. They are unable to sustain their life without advanced technology. How do you see that dying phase unfold?” So we’re not actually asking you about [MV]. People feel an incredible weight and feel like they’re actively participating in people’s dying.” (N1) “You can’t predict every possible scenario at the end-of-life, so when something is based on values, then the physician can interpret: “Well what was important to this person was to live independently, was to have their full mind, etc. MV treatment is unlikely to give that person what was important to them, therefore we will not do it.” (P2) “I had a call once of a woman who came in with an acute stroke and they wanted to put in a [nasogastric] tube in order to give her medication to reduce her pressure … but the daughter was frantic because her mother’s advance will had said ‘no NG tubes’. In that context, I think it could have been interpreted differently. We get involved in cases like that to help them interpret what the advance directives really mean and that is why we find it more useful when we do rely on values and meaning of life.” (N1)

Note. ACP = Advance care planning; MV = mechanical ventilation.

Table 3.

Methods Used to Engage in ACP Across Cultures: Respecting Diverse Beliefs, Values, and Wishes for Care.

Methods	Facilitators (F) or barriers (B)	Illustrative quotes
Accepting ethnocultural beliefs and values	(F) Avoid having objectives to convince patients/families to adopt alternate plans for MV (F) Be aware and open to diverse, ethnocultural perceptions (B) Frustration and ethical/moral distress with disagreements	“I’ve come to believe that we don’t approach [patients/families] with these objectives to get them somewhere they’re not ever going to get to. We all die very differently and there are some people who are going to die with aggressive interventions and resuscitation and they’re never going to be a DNR, but that’s not my job. I used to think it was my job to make [patients/families] change their mind, that’s the perception when you’re younger, especially when you’re the palliative care team. We actually have more success now that we don’t feel that pressure.” (N1) “Sometimes you just accept that they’re going to die in the ICU with very aggressive management and that’s what their story was going to be. Try to not to let that get in the way of end-of-life care, although it’s very difficult.” (P2) “As much as possible, we want to honor peoples’ ethnic and cultural background and their beliefs. You want to respect people for their beliefs and sometimes they’re in conflict with our beliefs. And yeah, it’s tough … that’s very, very tough. Or the whole quality of life decision - with some ethnic or cultural beliefs, any life is life, right? And all the resource stuff comes into it too, not that you want to think about resources in that context, but it’s really challenging. (P4) “There’s still frustration, there’s still a feeling that we failed to bring them to that spot where we want all the families to be at the end-of-life, which is accepting of comfort care. There’s still that feeling of not having been completely successful, but what I have always said is that it’s okay that some people don’t want that. It’s about having made the effort and having had those discussions and if you’ve done your very best to explain your perspective and to inform them so they can make an informed decision for MV, that’s all you can do really.” (P2)
Revisiting the conversation	(F) Instill trust for when major decisions for MV must be made (B) Cost of time on patient/family, healthcare team, healthcare system (B) Difficult to determine futility or benefits of MV	“The problem is by the time they come to ICU, they’re ventilated. Or if they’re in [emergency room] and a decision has to be made - that is the most non-optimal time to be having a discussion with the family about ventilating or not ventilating someone. To be honest, I don’t have many of those discussions. The discussions we’ll have are: “The patient is ready to have the tube out, we think we’ve got them as good as we can get them. If they’re not able to sustain themselves without the tube, what’s the next process?” (P4) “What I tend to do is do everything with the expectation to reconvene and rediscuss goals when it’s clear things haven’t been working, or things are going in the wrong direction, or if they’re actively dying. I find that approach can be more useful because you’re still able to maintain trust because you’re doing everything. So when you eventually say ‘despite everything the patient is dying’, there tends to be less resistance and at the time the more appropriate treatment, so palliative care or comfort care, is provided.” (P3) “When there’s uncertainty with the outcome, you tend to say ‘do I really need to discuss this?’ Because it’s obviously not a topic anybody wants to discuss, including myself. It’s a hard topic - if you can avoid it, you will.” (P2) “There are patients who come to the [emergency room] and they are DNR, no CPR, no ventilation, etc. but in the end they finish with ventilation because we don’t know their wishes. For me it’s very important to have a discussion before the worst happens, but sometimes it’s too late and it is harder to say: “Okay, now he/she is on ventilation - do we stop the ventilator?” (N2)

Note. ACP = Advance care planning; MV = mechanical ventilation.

Table 4.

Methods Used to Engage in ACP Across Cultures: Cross-Cultural Support in ACP.

Methods	Facilitators (F) or barriers (B)	Illustrative quotes
Participating in the decision-making process	(F) Provide recommendations and input to support decision-making for MV (F) Family insider to push healthcare team’s position within the family (B) Bedside nurses suffer with the patient (B) Discord between patient/family and healthcare team often defaults to MV	“When I feel that it’s not a reasonable treatment plan because the outcome will be very poor, I say it like that: “You’re very sick. There are things that could be done but I do not recommend you go to ICU and I do not recommend we put you on a breathing machine”. I’m not at all reluctant to give my opinion, in fact I like to take that burden off [the patient/family].” (P2) “I think one of our biggest challenges is when you look at old school patriarchal culture … if the patriarch or matriarch does not get it, it doesn’t matter if everybody under them does, you’re not making any headway. But you’ll almost always find in a group somebody who will get it, and then you tend to rely on them as an ‘insider’ to advance your position within that group.” (P1) “It can be hard for ICU nurses. I would say for myself that we so often see so much suffering and case after case where people don’t do well. So we’re quick to say ‘let’s have comfort measures’ or ‘let’s move in a comfort direction’ rather than give this three weeks, flog this poor person along, cause them all kinds of suffering, and then if we’re going for comfort measures anyways, let’s just go for it now.” (N3)
Language translation	(F) Diverse multidisciplinary team helps with verbal and non-verbal communication (B) Difficult to understand and conform to non-verbal communication (B) Difficult to provide emotional support through translators (B) Risk having information filtered when family members translate	“I worry about language barriers and sometimes we use the patient’s family to translate, but I’m not a big fan of that because you don’t know what’s being filtered and how it’s being interpreted. I always think that if you’re having these discussions and you’re not 100% comfortable with speaking the language, then having an outside interpreter might have some value.” (P3) “Non-verbal communication can be a very big [barrier], a lot of people forget that but sometimes the way you interact with family members while you’re providing care, you’re non-verbal communication can signal something that the family picks up on as not being congruent with care their loved one should be provided and that can cause issues.” (N4) “I had a translator once who made it very clear that all she would do was transfer words and it was a very unpleasant experience. I have had other translators where they get tears in their eyes and they feel it and they help us with things like: “when you say that word it doesn’t translate well and it can mean a different thing”. It’s incredibly helpful. Our medical team or multidisciplinary teams are very diverse so that’s wonderful.” (N1)

Note. ACP = Advance care planning; MV = mechanical ventilation.

Goals of Care Across the Illness Continuum

Exploring belief and value systems of patients and families

Physicians and nurses in the study believed that ethnicity, culture, and religion had a significant influence on patient and family decision-making and expectations for care. All participants recognized that variations exist between and within ethnocultural groups and believed that their role was important for exploring unique patient and family perceptions for MV as a life-sustaining treatment. Participants described using general questions in ACP to elicit beliefs and values for end-of-life care across ethnocultural populations. Using this value-based approach in ACP was deemed an effective method for eliciting goals for care that would encompass and guide decisions to withdraw or withhold MV treatment in medical scenarios that could not always be predicted.

If I were lucky enough to meet people early in their disease course, what I would be asking them is: What brings meaning to your life? What are your values? What’s important you? What would be acceptable for you? As opposed to ‘I never want a [nasogastric] tube’. You don’t know the circumstances of your future illness, it’s very difficult to pinpoint particular interventions and MV would fall into that. (N1)

Due to extensive heterogeneity between and within ethnocultural groups, participants described the importance of avoiding generalizations and stereotyping beliefs and values to certain ethnocultural groups based on previous experiences. However, it was deemed difficult to ensure that all important ethnocultural or religious subtleties were explored or addressed, and participants believed that patients and families had a responsibility to be verbal about their beliefs and values in order to ensure that important aspects would not be missed. Study participants also expressed a desire for more knowledge on ethnocultural and religious perceptions at the end of life to facilitate with exploring goals for MV treatment with patients and families, and to understand where deference may be accorded to physicians in some ethnocultural groups. Participants further expressed dependence on health-care team members to lend their cross-cultural insights based on previous experiences with certain ethnocultural groups.

With the number of different cultures, you never really know. There’s a bit of an onus on the family to let me know because I’m not familiar with their views or what they want. (N3)

Value-based discussions were deemed an effective method for facilitating decision-making for MV; however, three nurses and one physician described time as a barrier to having sufficient discussions on goals for care with patients and families when there was pressure for timely action. Especially in cases concerning frail older adults, several nurses in the study expressed urgency with eliciting decisions for MV from older patients or families upon ICU admission. One nurse also expressed difficulty with having value-based discussions in technology-heavy environments, like the ICU, where emotional support could be seen as a secondary task.

Finding common ground for setting care plans for MV

Participants who achieved mutual understanding and common ground with patients and families deemed this as an effective approach for engaging in ACP across cultures. The process of achieving common ground was described as building mutual trust and understanding the belief systems of one another prior to setting care plans for MV. This approach also allowed physicians an opportunity to reinforce their professional obligation in providing (or not providing) MV treatment at the end of life. All physicians in our study further described using data and evidence to address patient and family understanding of the medical situation and expected outcomes.

At the end of the day, it’s getting people to understand what is and what is not quality of life. All of these different cultures that believe in the sanctity of life no matter the cost, they can all imagine a scenario whereby life at any cost is not reasonable. There is a quality that doesn’t involve endless, intractable, untreatable pain. So now at least we have a point of agreement that we can start from - let’s move forward from there. (P1)

All of our nurse participants, on the other hand, described using an educational approach with patients and families to address common misconceptions with MV, euthanasia, and palliative care. Resources available to support patients and families through the dying process, however, were seen as a potential barrier by one physician and one nurse who described them as generic materials that did not necessarily meet cultural, religious, or linguistic needs.

Interpreting goals of care into care plans for MV

Physicians and nurses in our study described ACP as a value-based process, whereby the content and questions move across the illness continuum as a patient transitions from curative to comfort care. Using this value-based approach enabled the interpretation of goals for care into decisions to withdraw or withhold MV treatment in different medical contexts. This method was also seen as helpful for alleviating family guilt and burden associated with feeling “actively” involved in a loved one’s death. Furthermore, the involvement of nondenominational chaplains or religious persons in ACP were seen as a helpful resource for assisting patients and families with interpreting how religious principles are applied in different medical scenarios.

You can’t predict every possible scenario at the end of life. When something is based on values, then the physicians can interpret: What was important to this person was to live independently, to have their full mind, etc. This treatment is unlikely to give that person what was important to them, therefore we will not do it. (P2)

Respecting Diverse Beliefs, Values, and Wishes for Care

Accepting ethnocultural beliefs and values

Unless treatment was deemed medically futile, physicians described their obligation to uphold preferences for MV, even if those wishes were inconsistent with his or her moral or ethnocultural values for care. Two physicians and one nurse believed that ethnocultural beliefs and values never fade; people will prefer to die in different ways and there will always be demand for MV treatment for seriously ill and frail older patients. The most effective method used by physicians and nurses to prevent feelings of frustration was to avoid going into ACP discussions with objectives to convince patients and families to opt for an alternate plan of care. Physicians and nurses who described themselves as being open and accepting of diverse beliefs and values for MV believed that it prevented roadblocks and feelings of failure when patients and families did not adopt a Western biomedical view for care.

There’s still frustration, there’s still a feeling that we failed to bring them to that spot where we want all the families to be at the end of life, which is to be accepting of comfort care. There’s still that feeling of not having been completely successful, but what I have always said is that it is okay that some people don’t want that. It is about having made the effort and having had those discussions, and if you’ve done your very best to explain your perspective and to inform them so they can make an informed decision for MV, that’s all you can do really. (P2)

I used to think that it was my job to make [patients and families] change their mind, that’s the perception when you’re younger. We actually have more success now that we don’t feel that pressure. (N1)

However, many of the study participants described experiencing ethical and moral distress in situations where cultural and religious beliefs for MV differed from what he or she believed to be appropriate care. Values for the “sanctity of life”—a deeply held principle of the three monotheistic religions that recognizes human life as a creation of God and that underpins an attitude of respect and reverence for life (Jericho, 2011)—was the most frequent doctrine that conflicted with participants’ medical training, experience, and moral values for MV treatment at the end of life. In these situations, participants described seeking reassurance and support from health-care team members to validate that the patient’s case was being perceived and managed accordingly.

I lean on my colleagues that have more experience than me: “I’m at a loss here, help me out or help me understand this, or help me come to terms with what this is. Am I seeing things properly or am I being biased?” to sort of double check yourself on stuff, because it’s tough … it’s tough stuff. (P4)

Revisiting the conversation

Allowing time for the medical situation to evolve was believed to instill trust with patients and families and helped with grief when major decisions like MV withdrawal were to be made. All physicians said they would uphold preferences for MV with the intention of revisiting the conversation as new information emerged with changing health status. When patients experienced a sudden deterioration in health, three nurses and one physician expressed difficulty with having discussions regarding beliefs and values for MV in high-pressure situations or when family members were in a state of shock at the sudden risk of death. Three physicians also found it difficult to initiate ACP discussions when there was uncertainty in the health outcome or potential benefit of MV treatment. Under such circumstances, all physicians said they would initiate MV to allow time for the situation and discussion to evolve. One nurse, however, found it more difficult to discuss MV withdrawal once treatment had already been initiated.

What I tend to do is do everything with the expectation to reconvene and rediscuss goals when it’s clear things haven’t been working, or things are going in the wrong direction, or if they’re actively dying. I find that approach can be more useful because you’re still able to maintain trust because you’re doing everything. So when you eventually say “despite everything the patient is dying”, there tends to be less resistance and at the time the more appropriate treatment, palliative care or comfort care, is provided. (P3)

Cross-Cultural Support in ACP

Participating in the decision-making process

Two physicians and one nurse described using a shared decision-making approach to provide patients and families with varying degrees of input, recommendations, and support for making meaningful decisions for MV. One physician found it helpful to offer an alternate plan for care or an action, as opposed to presenting a plan that simply refuses MV. However, some participants found it challenging to engage in the decision-making process with strong patriarchal or matriarchal figures, as discord between decision-maker(s), other family members, and the health-care team often defaulted to intensive MV treatment. To overcome this challenge, one physician described using a “family insider” to advance the health-care team’s position on withdrawing or withholding MV within a group that is pushing for aggressive care for a seriously ill or frail older patient. One nurse also believed that because nurses experience bedside suffering with the patient, they are often more quick to push for comfort care.

Share in the decision-making process if you can … They want that information and what they want is to know that this is reasonable, this is normal, this is respectful, and that this is loving. You don’t want them to feel unsupported. There is a category of people that really just don’t know and they’re just not able to make decisions with the skills that they have, so you have to recognize that and support them. (N1)

Language translation

Language was described as a barrier for setting care plans for MV with patients and families from different linguistic backgrounds. One nurse also expressed difficulty with understanding and conforming to nonverbal communication with different ethnocultural groups. Health interpreters were seen as a great resource for overcoming language barriers, and in some cases, helping to understand nonverbal cues and ethnocultural worldviews. While seen as beneficial, one nurse found it difficult to provide emotional support through health interpreters. Family members were able to serve as interpreters and trusted messengers for the patient; however, physicians worried that information would be filtered in a way that would impact patient understanding and the decision-making process. When health interpreters were unavailable, two nurses found it valuable to seek cross-cultural input from health-care team members from diverse ethnocultural backgrounds.

Non-verbal communication can be a very big barrier, a lot of people forget that but sometimes the way you interact with family members while you’re providing care, you’re non-verbal communication can signal something that the family picks up on as not being congruent with care their loved one should be provided. And that can cause issues. (N4)

Discussion

Moral Disagreements at the End of Life

With growing attention to the value of patient-centered care in Canada, our findings are important for identifying and describing the approaches used by health-care providers to set advance care plans for MV with seriously ill or frail older patients from diverse ethnocultural backgrounds. All cultures and societies have a moral system that serves to guide the conduct and duties of its members. When one’s beliefs and values are violated or threatened in clinical contexts, people often respond in defensive ways to protect them (Johnstone, 2012). Interestingly, though rarely considered, this phenomenon seems to occur for all counterparts involved in the healthcare of a dying patient. Clashes in ethnocultural perceptions on death and dying often provoke profound moral disagreements and disputes between health-care providers and patients and their families (Johnstone, 2012).

Considering the bioethical principles of Beauchamp and Childress (2009) that are engrained in the Canadian health-care system, it is not surprising that health-care providers who uphold values of beneficence and nonmaleficence are conflicted in situations where there is demand for life-sustaining treatment for a seriously ill or frail older patient. Bioethics in the Western world grounds its approach in patient autonomy and quality of life as a way to prevent harmful outcomes from occurring in the dying process. Some ethnocultural and religious groups, however, view more to a meaningful death than simply exercising one’s autonomy to refuse life-sustaining measures. Although health-care providers feel that they are doing the morally appropriate thing when applying these principles, threatening or interfering with one’s ethnocultural worldview impedes safeguards intended to alleviate death-related anxieties (Johnstone, 2012). Failure to take into account ethnocultural differences between the health-care providers, patients, and their families, can result in unjust and preventable moral harm.

There seems to exist a perception among health-care providers in our study who felt that ACP was a method used to move a patient and his or her family toward comfort care when health outcomes looked grave. Participants who appeared to have objectives to convince patients and their families of alternate plans for care ultimately experienced frustration when they were unable to move them toward comfort care. Furthermore, these feelings of failure seemed to be associated with ethical and moral distress, and negative caregiver attitudes that could ultimately have adverse effects on job satisfaction, retention, and physical and psychological well-being (Dodek, Norena, Ayas, & Wong, 2013). As expressed by some participants and confirmed by research, these situations can be more difficult for bedside nurses who experience suffering with the patient but have little input on the direction of care (Dodek et al., 2013). Furthermore, the two physicians that described experiencing ethical and moral distress in these situations were both female, alluding to research findings that suggest female physicians display higher levels of empathic concern and an array of negative feelings in clinical practice, though this concept should be further explored (Elpern, Covert, & Kleinpell, 2005).

There is a difference between respecting and accepting ethnocultural perceptions for MV that appears to dictate this experience for physicians and nurses in our study. Health-care providers who have awareness of their own moral and ethnocultural values and are able to separate this from the provision of patient-centered care ultimately experience less frustration and negative attitudes that impact quality of care. If the issue is to be solved, the Canadian health-care system needs a fundamental shift in the way Western bioethical principles are perceived in order to meet the moral interests and ethnocultural perceptions of the patients they concern.

Enhancing Patient-Centered Care in ACP

Our findings suggest that ACP is more effective when a value-based approach is used to elicit goals for a meaningful death and plans on how that might be best achieved. When ACP discussions focus too narrowly on decisions for treatment, such as to withhold or withdraw MV, it becomes difficult to consider how preferences can be applied in different medical scenarios that cannot always be predicted. Inquiring about one’s beliefs and practices is an important starting point for ethical decision-making for MV—unfortunately, ACP discussions are currently not framed or approached in this way.

When there is no urgency to plan for end-of-life care, such as in cases dealing with acute comorbidities, physicians and nurses in our study felt that this difficult conversation could be delayed. Similarly, it was considered to be a nonoptimal time to be exploring goals for care when facing pressure for timely action. Institutional policies that support the transition of beliefs, values, and goals for care across the illness continuum, and through different health settings, may prove to be valuable in urgent episodes for care where a decision for MV must quickly be made. Unfortunately, only about one third of long-term care facilities currently have policies for ACP and these discussions are currently not in routine practice (CHPCA, 2012).

Physicians are not obligated to provide treatment that is deemed medically futile; however, many have expressed difficulty with predicting timing of death and assessing futility of MV, especially during acute episodes of deterioration. In these situations, physicians said they would initiate MV treatment in high-pressure situations with the intention of revisiting the conversation as health outcomes become more apparent.

Aside from the issue of potentially providing unwanted life-sustaining treatment, the initiation of MV is often the site where cultural and religious clashes occur. Jewish, Muslim, and Catholic religions allow for the refusal of MV but forbid the withdrawal of life-sustaining therapies once they have been initiated (Jericho, 2011). Suicide is condemned in these three monotheistic religions, and MV withdrawal may be interpreted as an act that hastens death. In the wake of the landmark decision on physician-assisted death in Canada that now allows patients with a grievous and irremediable condition the right to end their life (Carter v. Canada, 2015), health-care providers are encouraged to clarify for patients and families the moral distinctions between the different acts and omissions that result in death in order to avoid disagreements that ultimately leave the patient in pain or receiving unwanted life-sustaining treatment.

Physicians in this study described using data and evidence as a method to address misconceptions with MV. Research in the fields of neuroscience and social psychology, however, show that when making decisions, people are primarily driven by emotion, not “facts and evidence” (Damasio, 1994). These findings further emphasize the importance of using value-based approaches in ACP, whereby health-care providers can better understand the belief systems behind the decisions being made and to better guide patients and families in making meaningful end-of-life decisions.

The involvement of nondenominational chaplains and spiritual care workers was considered helpful for providing patients and families with religious inquiries on the differences between euthanasia and the withdrawal or withholding of MV. Research suggests, however, that generic interfaith spiritual care workers experience challenges in addressing the needs of Muslim patients and that nondenominational services are often refused (Abu Ras & Laird, 2011). Considering these findings, it would be worthwhile for researchers to further evaluate the effectiveness of cross-cultural approaches used by health-care providers in public health contexts (e.g., patient or family satisfaction with using nondenominational chaplains), and to further explore from a cross-cultural perspective patient and family expectations when planning for end-of-life care.

Supporting Cross-Cultural ACP Across the Illness Continuum

As it currently stands, the Western biomedical viewpoints emphasized in ACP cannot be appropriately applied to another culture without modifications. For example, the use of terms like “cancer” or “palliative care” that do not have direct translations or that instill negative emotions in other languages should be modified in a way that enables moral discourse across cultures. Considering the high degree of heterogeneity between and within ethnocultural groups, health-care providers should also have the required skills to not only explore ethnocultural perceptions but also to effectively adjust their approach in accordance with the patient and family’s needs.

Despite a majority of our participants feeling confident with exploring beliefs and values for MV in ACP, all had expressed a desire for more cultural competency education and training. A Canadian study showed long-term benefits of cultural sensitivity training for health-care providers, and the results include an increase in health-care providers’ understanding of multiculturalism, open-mindedness, and an improved ability to communicate with different ethnocultural populations (Majumdar, Browne, Roberts, & Carpio, 2004). Cultural competency training alone, however, will not directly translate or guarantee health-care providers’ behaviors.

Limitations

Due to limited time and resources, recruitment was limited to the Ottawa region. The strength and consistency of major themes suggest that results may be generalizable, but the findings should be confirmed in other settings and regions across Canada. Due to the qualitative nature of this study, there was difficulty in presenting concrete methods for facilitating ACP across cultures. The ethnocultural demographics of patients and families and the number of patients receiving MV per annum within the research sites were not obtained and it is unknown whether some hospitals presented more ethnocultural diversity and MV scenarios compared with others. There was also a possibility of social desirability bias in participant responses to sensitive questions and descriptions of cross-cultural approaches may differ from the care that was actually delivered.

Conclusion

An ACP approach that is effective across ethnocultural groups is essential for the provision of patient-centered care in Canada, and the benefits could be seen on the health-care system, health-care teams, and patients and families during this vulnerable time. Our findings identified personnel, organizational, and systemic barriers that challenge the application and uptake of ACP across ethnocultural groups. There is a need for ACP to be further explored using participatory action research approaches to identify the expectations of patients and families in the end-of-life process. Furthermore, implementation research approaches should be used to address gaps in organizational support that enables health-care providers to provide good quality, end-of-life care across cultures, and should explore the potential of ACP policies to move across the illness continuum with the patient and family. In undertaking these efforts, ACP can prove to be a valuable tool for reducing social, economic, and psychological burden at the end-of-life, and can afford every Canadian the opportunity to a meaningful and culturally appropriate death.

Appendix

Interview Guide

Part I – Introduction

1. Please tell me your job title and the medical units you normally work in?

2. How long have you been practicing?

3. In what country did you complete your medical training/residency?

Part II –Advance Care Planning Across Cultures

Advance Care Planning

4. Are you involved in ACP discussions with patients and families?

If so, are you familiar with any frameworks or policies (published or unpublished) that help guide you through the process?

Based on your experience, what is your role in ACP?

Who is often involved in this discussion?

At what point is this conversation normally initiated?

If no, are you able to describe for me how ACP takes place in your practice?

Is there anything specific that you do that supports or contributes to planning for end-of-life care?

SKIP TO #8 + SIMULATED SCENARIOS

5. In your opinion, how important is it to have discussed plans for MV treatment (invasive/non-invasive) in advance?

6. Briefly, what are some of the main points that you want to get from an ACP discussion?

7. Generally, how comfortable are you discussing end-of-life care with patients and families?

Cross-Cultural Care

8. Do you feel that in your medical experience, you have managed care for patients from a variety of different ethnocultural backgrounds?

If so, briefly what ethnocultural backgrounds have you cared for?

Have you ever participated or taken part in any form of cultural competency training or workshops?

In your opinion, how important is the patient/family’s ethnocultural background when it comes to end-of-life care?

How confident do you feel providing care for a patient/family with an ethnocultural background that is different from your own?

If no, have you ever participated or taken part in cultural competency training or workshops?

In your opinion, how important is the patient/family’s ethnocultural background when it comes to end-of-life care?

How confident would you feel providing care for a patient/family with an ethnocultural background that is different from your own?

SKIP TO SIMULATED SCENARIOS

9. Does your approach to ACP change when you are dealing with a patient/family from an ethnocultural background that is different from your own?

If so, can you describe to me what you do differently?

10. Can you describe for me the general approach that works best for you for understanding different religious or cultural beliefs/values at the end-of-life?

ACP for Mechanical Ventilation Cross-Culturally

11. Do you find that, at times, ethnocultural beliefs/values for MV are inconsistent with what you thought was appropriate for the patient?

Do you experience moral distress in these situations?

What methods or skills do you use to work with the patient/family to find a solution for care?

Do you face any challenges with using this approach?

12. How does this approach change according to different illness trajectories?

13. OPTIONAL: Can you think of an example where there was a cultural misunderstanding or a disagreement with regards to CPR or MV treatment?

How did you find a solution for care?

14. Overall, do you feel that ACP is effective for managing or dealing with different ethnocultural beliefs/values for end-of-life care in advance?

15. Do you feel that you have the support (ex. organizational, systematic, material, etc.) to provide end-of-life care that matches ethnocultural needs at the end-of-life?

16. Are there any other sorts of challenges that you experience that hinder your ability to provide cross-cultural care at the end-of-life?

If any, how do you overcome these challenges?

Simulated Scenarios

Consider the following scenario: In some cultures, discussing death and dying with a seriously, ill patient is considered offensive, taboo and inappropriate. In an attempt to develop an ACP for MV, the family pushes for familial autonomy and prefers to take responsibility for decision-making, despite the patient’s capacity to make decisions:

What are some important considerations that you would take into account?

Can you describe for me how you would set a care plan for MV in this situation?

How would your approach change if the patient were dealing with a gradual/progressive illness (ex. cancer) vs. an acute deterioration (ex. organ failure)?

Consider the following scenario: In some cultures, there is a strong value for the sanctity of life or the idea that human life is sacred and should be preserved at all costs. During an ACP discussion, a patient/family under your care express strong preferences for MV intubation, despite futility or minimal benefits of this treatment:

What are some important considerations that you would take into account?

Can you describe for me how you would set a care plan for MV in this situation?

How would your approach change if the patient were dealing with a gradual/progressive illness vs. an acute or traumatic illness?

17. In your opinion, is there anything that should be changed or done in advance that would improve your ability to set or meet goals for MV cross-culturally?

18. Knowing what you now know about this topic, what advice would you give to researchers or fellow health care providers about how they should talk or think about this issue?

Part IV – Closing

19. Is there anything else that you would like to say or add to this discussion that I did not bring up in the interview?

20. Are there any reports or other literature that you would recommend that would be helpful to my research?

21. Could you suggest anybody who would be helpful in providing me with more information on ethnocultural considerations in ACP or might be interested in doing this interview with me?

Footnotes

Declaration of Conflicting Interests

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

Funding

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

Author Biographies

Ayah Nayfeh is completing her PhD in Health Services Research at the University of Toronto and completed her MSc in Interdisciplinary Health Sciences at the University of Ottawa. She has experience conducting research on end-of-life care, global health, and health system issues. She currently holds a position as a program management officer in the Inclusive Economies program at Canada s International Development Research Centre, and worked in the Knowledge Translation unit at the Canadian Institutes of Health Research.

Isabelle Marcoux holds a PhD in community psychology (Université du Québec à Montréal, 2003). She has completed a postdoctoral fellowship in social and preventive medicine at Vrije Universiteit, Amsterdam (the Netherlands) and a second one in humanities and social sciences applied to cancer care at the Université de Nantes (France). She conducts studies on attitudes, knowledge, and experiences on euthanasia and medical assistance in dying among different populations. Through her research, Isabelle Marcoux aims to contribute to knowledge development and knowledge translation in order to improve end-of-life care in Canada.

Jeffrey Jutai is a psychologist who received his MSc and PhD degrees from the University of British Columbia and his BSc from the University of Toronto. For more than 20 years, he has been doing research on assistive technologies for persons of all ages who have a sensory or physical disability. He has significant experience and expertise with research syntheses (systematic reviews) on topics relating to physical rehabilitation. At the University of Ottawa, he has taught courses on technology and health, information systems in health, and experiences of illness, impairment, disability, and health care.

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