How family physicians introduce palliative care to patients with chronic illnesses

Abstract

Objective

Increasing numbers of Canadians living with complex, life-limiting conditions demand high-quality palliative care. Timely access to palliative care can help to reduce stress, improve quality of life, and provide relief for patients and their families. The purpose of this study is to explore the experiences of family physicians (FPs) regarding the decision and process of introducing palliative care to patients with chronic diseases.

Methods

Interpretive description methodology was used to guide the investigation of the research question. Thirteen Calgary Zone FPs participated in individual interviews. Data was collected iteratively and analyzed using constant comparative analysis.

Results

Analysis of interviews identified the overarching themes of dignity and empowerment, which describe the experience of FPs introducing palliative care to chronically ill patients. Four subthemes were woven throughout, including the art of conversation, therapeutic relationships, timing, and preparation of the patient and family.

Discussion

While the benefits of palliative conversations are widely accepted, a deeper understanding of how FPs can be supported in developing this aspect of their practice is needed. Understanding their experience provides knowledge that can serve as a framework for future education, mentorship, and competency development.

Introduction

Increasing numbers of Canadians living with complex, life-limiting conditions demand delivery of high-quality palliative care outside of acute care or specialist practice. ¹ Family physicians (FPs) are often responsible for discussing and providing palliative care, a topic that remains challenging for most health professionals. Little empirical evidence exists about how FPs identify whether and/or when it is appropriate to engage in these conversations with their patients. ² However, delays in these conversations may impede the ability of patients to participate in informed decision making at all stages of their illness experience. ³

Timely access to palliative care can help to reduce stress, improve quality of life, and provide relief for patients with a life-limiting illness and their families. ⁴ When the initial introduction of palliative care occurs within the last weeks or short months of an individual's life, there are poorer patient outcomes, including lower mood, decreased quality of life, and higher rates of hospitalization, as well as greater financial costs to the health system.^5,6 As FPs are often the primary providers of palliative care, their proficiency, and comfort are essential components of this role. The early introduction and provision of quality palliative care are particularly important for individuals with chronic illnesses whose health status and prognosis are difficult to predict. Information gathered by FPs when discussing palliative care can be used to guide decision making, anticipate future needs, and ensure treatment decisions are aligned with the patient's values and expressed wishes. ⁶

The value of FPs providing palliative care has been established, however, little research has been done to understand their experience in undertaking such a complex and emotionally challenging aspect of care. Our study shares the experiences of FPs who responded to the question, “what is the experience and understanding of family physicians in having palliative conversations with patients with a life-limiting, non-cancer diagnosis?”

Methods

Design

We used interpretive description (ID) methodology to guide the investigation of the research question. ID stems from a core tenet of valuing clinical experience that may not be adequately captured in other qualitative methodologies. This methodology was initially developed as an approach to qualitative research that addresses complex clinical experiences and is informed by the researchers’ clinical expertise as described by Thorne. ⁷ ID seeks to inform understanding by exploring clinical problems with the goal of guiding future practice.^7,8 Ethics approval was obtained from the University of Alberta Ethics Committee (Pro00096196) and the University of Calgary Ethics Committee (REB20-1147).

Recruitment

After obtaining ethics approval, participants were recruited using posters that were displayed in local clinics where FPs practiced. Electronic posters were forwarded to FP contact lists (via email) by third-party contacts including clinic managers or collegial physicians. The poster reflected the team's research purpose to interview FPs about their experience introducing palliative conversations to patients with chronic illnesses. Interested participants were then required to complete a consent-to-contact form, which the identified third party then forwarded to the Principal Investigator (PI). Inclusion criteria were English-speaking FPs currently practicing within the Calgary Zone and who care for patients with life-limiting, non-cancer illnesses. Exclusion criteria encompassed non-English-speaking FPs, FPs who have subspecialized practices, FPs outside of the Calgary Zone, those not currently practicing, and/or those who did not care for individuals with life-limiting, chronic illnesses. Using purposive sampling, 15 Calgary Zone FPs who worked in private practice or as part of a Primary Care Network were contacted by the PI via telephone or email and provided with further information, and a consent form. Thirteen of the 15 potential participants returned the consent form and agreed to proceed with the interview. The two FPs who did not participate did not respond to investigators. Participant contact information was provided to select members of the research team who conducted the interviews virtually. The research team had no prior knowledge of, or working relationship with, any of the participants who were interviewed. The same two research team members conducted all interviews to ensure as much consistency as possible.

Interviews

Due to the COVID-19 pandemic, all participants were interviewed remotely via Skype for Business. Only the participant and interviewer were present. Rapport was established and consent was confirmed prior to formally initiating the interview. Semi-structured interviews were employed to allow for sharing of each participant's lived experience while ensuring the following topics were addressed: personal understanding of palliative care, experience and understanding of the elements of early palliative care, application and value of palliative care in practice, timing and strategies to initiate conversations about palliative care and challenges. Interviews took place between November 2020 and March 2021. All transcripts were transcribed verbatim by a professional transcriptionist.

Data analysis

All personal identifying details were removed from transcripts prior to analysis by the research team. To gain familiarity and consistency, the first three transcribed interviews were reviewed independently by all research team members making annotations on relevant themes. Next, these three transcripts were reviewed collectively to identify similarities and differences in how each team member analyzed the data. Once consensus was obtained, relevant themes were coded. The remaining transcripts were analyzed and coded independently by two team members. After all transcripts were analyzed, team members worked together to collectively identify themes that were representative of the experiences of the majority of participants.

Results

Participants were 13 FPs practicing in a rural or urban setting and who had varying experiences in introducing palliative care to patients with chronic illnesses. Several themes emerged from the analysis of the interviews. Research findings identified the overarching themes of dignity and empowerment as integral in the experiences of FPs introducing the concept of palliative care to patients with chronic illnesses. Dignity and empowerment were woven through four subthemes: the art of conversation, therapeutic relationships, timing, and preparation of the patient and family.

Dignity and empowerment

FPs expressed that the promotion of dignity was a strategy to empower patients by offering them the opportunity to be active participants in their own care, including end-of-life decision making. One participant stated, “Knowledge is power and if you just give them everything that you know, and then they can plan their life and they have some kind of control as to what is happening.” Another subject expanded on this concept: “So they are part of the team themselves and I want them to take hold of some of the information and say, ‘okay, this is me, this is my life, so I need to be a part of this.’”

The art of conversation

Participants recognized that palliative discussions are sensitive, difficult, and require specialized communication skills. This is the art of conversation. Strategies such as the use of open-ended questions, active listening, and demonstrating flexibility and respect, were found to be especially effective in supporting patients to feel heard. Participants indicated that the development of these skills is an art form that can take many years of practice to fully develop. One interviewee described the value of skillful conversation as intrinsic rather than medical:

Family medicine, from a palliative care standpoint, is really about improving quality of life for patients, and at the same time, these gentle conversations, where you ease a person into conversations about where they’re at, in terms of what their wishes are and it's a complicated art talking to people.

Fundamental to an effective palliative conversation is being able to relate to the individual as a person, a fellow human, rather than speaking with them solely as a physician: “I guess my only strategy is, you need to not be a doctor, you need to be a person, so you need to not talk medicine. You need to talk life.” One participant alluded to the value of authenticity in their connections to patients by taking the time to actively listen to what the patient needs to say in a flexible and genuine way:

…and listening. Listening, like shutting up at the beginning and just letting them talk and then just trying to be as patient-centered as possible, and let them cry, or shout or whatever they need to do, works well, and definitely at the beginning for sure.

Therapeutic relationships

Due to the fulsome and longitudinal nature of the FP–patient relationship, FPs have a unique opportunity to introduce palliative conversations. One participant noted, “Honestly, their patients, who know them well, would be delighted for their own family doctor to give that care that they know and understand at a much deeper level than someone they’ve never met before in a palliative team.” This long-standing relationship allows the FP to view each successive conversation as a new and unique experience within the context of that relationship, a term one participant described as “drip feeding.” These conversations are circumstantial and value-driven: “We’re looking for clarity, places to give empathy, and real friendship with these people. We really do know these people, we see them every week, and we see them as they change or deteriorate.”

Participants identified that each patient is positioned within a unique system of support. Identifying and including these are imperative to successful and respectful palliative conversations. There often exists a therapeutic alliance between the FP, the patient, and their identified support system. As one participant stated,

Family usually, from my experience, ends up being a huge support and so the support is not only for the patient but also for the family…empower the family members so that they can be there for the patient because I think that's important for them.

Timing

The opportunity for drip feeding that is made possible by this longitudinal relationship allows for identification of ideal timing for the introduction and development of these discussions: “I think it's important that people are drip fed, over time, the right messages, so pretty much at diagnosis.” When another participant was asked about the way to begin palliative care conversations, they replied, “The beauty of general practice is that we have that time and we have the ability to kind of move people slowly through the process.” FPs acknowledged that they watch for patient cues to identify the ideal time to introduce and progress palliative conversations.

Preparation of the patient and family

FPs felt that patients and their families are empowered to make fully informed decisions when they have a detailed understanding of their disease, which is best facilitated by initiating palliative conversations early. In doing so, participants indicated that patients and families, in collaboration with FPs, develop a plan of care: “Giving caregivers, families and healthcare providers a concrete map and allowing patients to say, ‘this is what I want.’”

After FPs have provided the groundwork for early palliative care conversations, they have the opportunity to continue these discussions at various points in the illness trajectory. When this drip-feeding approach is applied in a manner that is respectful of each individual and circumstance, it allows for continuous education and evolving understanding of the diagnosis. Furthermore, participants felt that the patient's fears and anxiety about their future are reduced when the patient has a full understanding of their diagnosis.

This comprehensive understanding assists FPs in eliciting patient and family input regarding their preferences for care. In this way, FPs provide ongoing education, support, and encouragement that better prepares patients and their families for what is to come. One participant noted, “I think the benefit of [earlier palliative care] is that it eases the later activities of palliative care.”

FPs highlighted the importance of preparing the family alongside the patient. They acknowledged that at times, the expectations between patients and their families do not align. Some of the participants spoke about family expectations that differed from those of the patient. For example, family members may focus on symptoms or details at end-of-life that are not bothersome to the patient, thus families may need guidance to return their focus to what is important to the individual. One participant stated, “In palliative care you have to treat the whole family; treating the patient, like treating the medical complaints of the patient, is nothing compared to treating the distress and expectations of the family.”

Discussion

Dignity and empowerment

In this study, the primary outcome of FPs initiating palliative conversations was the promotion of both dignity and empowerment. This enables patients to make decisions based on personal values that represent their unique perspectives of “quality of life.” Maintaining dignity for patients, especially those approaching the end of their lives, is a core principle of palliative care and can be described as being worthy of respect or esteem, thereby helping patients to develop a sense of self-worth. ⁹ Participants felt that as FPs they can have a significant influence on the dignity of their patients which can improve the patient experience. The promotion of dignity in palliative conversations correlates highly with the construct of empowerment which refers to “a process through which people gain greater control over decisions and actions affecting their health” thereby gaining confidence in controlling one's life and claiming one's rights. ¹⁰ Participants felt this was particularly important for patients with life-limiting illnesses, in order to optimize comfort and quality of life for each individual. The art of conversation, therapeutic relationships, timing, and preparation were the themes identified by participants who used them as tools to ensure these crucial elements were addressed.

The art of conversation

The art of conversation was a concept that participants identified as important to palliative conversations to empower and respect the individual. Developing specialized communication skills such as active listening and open and reciprocal dialogue was noted by participants to require time and experience. Given the sensitive and sometimes difficult nature of palliative conversations, it is important that the practitioner intentionally look beyond the “medical” scope of care and incorporate the element of human connection. The ability to do so yields meaningful conversations that explore the patient's needs, goals, and preferences for care. Similar findings were corroborated by Sinuff et al., ¹¹ who found that end-of-life care is improved when practitioners take the time to create a mutual understanding that helps to inform a plan of care that is unique to the patient.

Further, participants shared that the ability to develop these skills and employ them in an authentic and genuine manner can take years of intentional practice and commitment. The more competent and confident FPs are in having these conversations, the better able they are to promote their patients’ sense of self-worth thereby empowering them to take an active role in their health journey. These findings were consistent with other research studies. For example, Glaudemans et al. ¹² identified that advance care planning was more likely to be done by physicians who were intrinsically motivated to have these conversations and had more clinical experience and appropriate training to engage in palliative conversations.

Therapeutic relationships

Artful conversations also allow for the development of genuine, therapeutic relationships. FPs who are skilled in these discussions are best able to get to know their patients over time: the individual, their circumstances, strengths, and challenges, all of which allow for effective and dignified conversations. It is clear from the results and literature that palliative conversations do not cease after they are first introduced. They require multiple discussions over the duration of the relationship and trajectory of the illness and are based on what is important to the patient and family. This is the nature of the FP–patient relationship, which allows for the giving and gathering of information over time, described earlier as drip feeding. This longitudinal relationship dispels the misconception that palliative care should occur at a specific time (end-of-life) or in a standardized manner. The importance of progressive therapeutic relationships was also emphasized in research done by Sharp et al. ¹³ who identified that knowing the patient and their family, “planting seeds,” and having flexible ongoing discussions were facilitators to the introduction of advance care planning with patients.

Participants acknowledged that this relationship with their patients does not occur in a silo but encompasses each patient's unique system of support. Just as each person's strengths, challenges, and circumstances are different, so too are their support systems. By gaining an understanding of the complex social ecosystem within which each patient lives, FPs are providing the opportunity for a mutual, respectful relationship, giving the patient the best opportunity to thrive and promote quality of life, whatever that means for that particular person. ¹⁴

Timing

Added to their ability to define and build therapeutic relationships is the FPs’ sensitivity to timing, the third theme identified in our study. This includes knowing when to initiate palliative conversations, when to build the discussion, and when to engage support systems across the illness trajectory. Participants reiterated that FPs are well-positioned to do this work based on their ability to identify individual patient cues and readiness. In addition to the specific timing and evolution of discussions, most participants felt palliative conversations should be initiated as early in the disease trajectory as possible. This finding was unique to our study, as the literature suggests that FPs find it more difficult to identify palliative care needs in the earlier stages of disease rather than the terminal phase. Several studies, as well as the extensive clinical experience of the research team, reveal that FPs are most comfortable discussing and identifying palliative care needs when prognosis is clear, which is usually in the last weeks of life.^15,16

Preparation of the patient and family

By beginning palliative conversations early in the disease trajectory, FPs are best able to prepare the patient and family for the journey ahead, which is the final theme identified as being critical to the establishment of patient dignity and empowerment. Knowing what to expect and having a patient's wishes and values identified in the context of their progressive, life-limiting illness is critical to supporting their feelings of dignity and empowerment. Therefore, preparation involves not simply educating the patient but doing so in a manner that respects how they prefer to receive information and using this to create a plan of care that aligns with what is most important to that individual and their family. Participants identified that this collaboration between FP and patient fosters the patient's sense of control over what is happening, allows them to make truly informed decisions, and reduces fear and anxiety about their future. These progressive conversations can identify the patient's and family's changing preferences for care at all stages of the illness. One participant described this as the ability “to knit and re-knit each individual's palliative journey.” Other work in this area has shown that when palliative conversations involve exploration of patient and family knowledge, fears, hopes, and needs, patients are better positioned to define goals and preferences for future care. ¹⁷ Furthermore, it is agreed that in addition to facilitating patient autonomy, early initiation of palliative conversations is shown to improve patient satisfaction and self-assessed quality of life. ⁶

Barriers to initiating palliative conversations

Successful development and implementation of a palliative approach to care are dependent upon whether individual FPs feel confident initiating palliative conversations at diagnosis. FPs with limited experience understood the essential components of early palliative conversations but were uncomfortable proceeding. Some FPs expressed increased comfort with transferring care of their palliative patients to other physicians, possibly due to this lack of knowledge or experience. This barrier was corroborated in a study conducted by Wichmann et al., ¹⁷ which identified a perceived lack of training and experience as hurdles to initiating effective palliative care conversations.

Despite a general agreement that the FP role is uniquely poised to initiate and develop palliative conversations, logistical barriers were found to make this difficult at times. Some participants identified lack of time and financial compensation as major obstacles in this aspect of their work. Participants felt that palliative conversations were too time consuming to incorporate into traditional 15 min appointments. Additionally, many participants identified that the systems within which they work do not compensate them for palliative conversations, despite the significant resources and skills needed. Relevant studies show that both patients and practitioners cited the length of time palliative care conversations require and the perceived busyness of the FP as barriers to initiation.^12,18 The lack of financial compensation is not unique to the setting of our participants: many international studies demonstrated the same findings where reduced or absent financial compensation significantly impaired the ability and desire of FPs to engage in palliative conversations.^18–20

Another commonly cited obstacle identified in the literature was related to the uncertainty of whose role it is to initiate palliative conversations: the FP or the patient. A systematic review by De Vleminck et al. ²⁰ found that many FPs believe it should be the patient or caregiver who raises the concept of palliative care while at the same time, patients feel this falls within the responsibilities of the FP. Comparatively, participants in our study felt strongly it was the responsibility of the FP to introduce palliative conversations early in the illness trajectory.

Recommendations/strategies to initiate palliative conversations

As identified, the primary objective of this work has been to create recommendations and identify strategies that could be used to help FPs successfully initiate palliative conversations. When asked about this, participants indicated that the establishment of formal and informal mentoring amongst FPs is key to developing this domain of their practice. Further, there should be ongoing work by specialist palliative care practitioners to educate and partner with FPs to support capacity building. Therefore, our study supports previous studies which recommend experienced physicians provided leadership and mentorship to novice FPs. Another recommendation is to develop strategies to address the logistical barriers of time and money. These include introducing systems that flag patients who would benefit from palliative conversations based on disease-specific criteria, as well as ensuring financial compensation is provided to reflect the time and skill needed for these discussions. The cost of these strategies would likely be mitigated by the downstream benefits identified in the literature related to the early introduction of palliative care such as lower rates of hospitalization and decreased frequency of invasive medical procedures in the last months of life.^5,6

Limitations of the study

Interpretive research allows for the integration of clinical experience into the study, however, by emphasizing qualitative analysis over quantitative, there is room for bias on behalf of the researcher. In this study, purposive sampling led to the recruitment of many participants who were advocates of early palliative care. Although there were some inexperienced physicians who participated in the study, the majority of participants were comfortable introducing palliative care conversations. Further, participant recruitment occurred during the COVID-19 pandemic, which resulted in greater “word of mouth” recruitment than would have occurred had we been able to share recruitment materials more objectively, which may have contributed to sampling bias. The sample may not be representative of the FP population.

Alignment with existing literature

An updated literature review was conducted upon completion of our study to identify if any new or differing findings were available on the topic. Our study is largely in agreement with recently published literature. The benefits of the early introduction to palliative care, difficulty determining the best time or trigger to initiate conversations, and systemic barriers such as lack of time and compensation were consistent with our findings. Deckx et al. ²¹ identified that the unique FP–patient relationship helps FPs recognize knowing how and when to start a palliative conversation. Further to this, the involvement of FPs in palliative conversations has been connected to earlier completion of advanced care planning for patients with chronic illness. ²² It has been consistently reported that patients prefer to have palliative conversations in the primary care setting as their relationships with their FPs allow for more individualized and effective dialogue.^21,23,24

The current literature also identified ongoing barriers to FPs engaging in palliative conversations. These included physician-dependent uptake (often related to comfort and experience), demands on time, lack of compensation/value for the work, and limited practical resources.^25–27

There was one area in particular where our findings differed from what has been recently published. The majority of our study participants indicated that it should be the responsibility of the FP to initiate palliative conversations, however, many studies have found that FPs prefer patients/families to begin these discussions.

Implications for future research

Further studies with groups of participants with a broader range of experience and practice settings should be considered to expand these findings. Increased focus on exploring practical solutions or tools would be valuable. Research with patients whose FPs have introduced palliative care would also be helpful in understanding the broad scope of the dynamics and experience of these conversations in this particular setting.

Conclusion

In our study, we developed an understanding of the experiences of FPs initiating palliative conversations with patients who have life-limiting, chronic illnesses. These discussions revealed the overarching themes of the promotion of dignity and empowerment of patients. While the benefits of palliative conversations are widely accepted, the delivery requires a skillful and thoughtful approach that considers not simply how or when to initiate the conversation but also the complex social and value-laden ecosystem within which each patient exists. For most participants, the artful engagement in these conversations happened slowly over time as their relationship with their patients progressed, an approach FPs felt uniquely aligned with their roles. Despite the clear benefits to FPs engaging in palliative conversations, systemic barriers such as time and compensation present challenges. A deeper understanding of how FPs can be supported in developing this aspect of their practice is needed, particularly in relation to the concepts of mentorship and competency development within the constraints of a public healthcare system.