Four patients, four family members, and ten oncologists participated in this study. One patient participated from the province of Ontario, where she was receiving treatment. This research was approved by the Nova Scotia Health Authority Research Ethics Board. None of the patient-family member participants were dyads. The duration of each interview was 38-64 min for the patient and family interviews, while oncologist interviews lasted from 26-69 min. Analysis of the transcribed interviews resulted in four overarching themes from patients/family members and five overarching themes from oncologists. Themes identified from patients/family members were: 1) positive attitudes towards ACP; 2) HCPs lack an understanding of patients’ and families’ informational needs during the ACP process; 3) limited access to services and support within the healthcare setting; and 4) poor communication between HCPs. Themes identified from oncologists were: 1) initiating ACP discussions; 2) navigating patient-family dynamics; 3) limited formal training in ACP; 4) ACP is better suited to / requires a team approach; and 5) lack of coordinated systems hinders ACP. These themes are described below; Tables 1 and 2 present illustrative quotations.
Patient and Family Views
Positive attitudes towards ACP
Almost all patients and family members portrayed positive attitudes towards ACP. Although most participants were unable to specifically define ACP, this appeared due to unfamiliarity with the term itself. When given the definition, they expressed that they had indeed participated in activities and discussions that are part of ACP. All participants understood ACP involved planning around the end-of-life care. Patients and families felt ACP discussions increased their knowledge about the disease process, allowing an opportunity to plan for future medical emergencies, as well as the practical aspects of living with a serious illness (e.g., finances) toward which they expressed positive feelings. ACP was felt to empower patients, allowing them to regain a sense of control during a time when much of their autonomy had been stripped from them. Personal experiences with ACP ranged from individuals with metastatic cancer who had undergone conversations around their wishes for pain/symptom management as they continued non-curative intent treatment to family members who expressed negative experiences near their end of life due to the lack of timely conversations and an advance care plan. Most participants stated ACP should occur shortly after their diagnosis of cancer, with one individual expressing that ACP should be discussed prior to any serious diagnosis.
In the context of advanced cancer, participants expressed their beliefs that is it the responsibility of the physician to initiate these discussions. They also expressed their views that HCPs must provide patients and families the time and space to assimilate feelings and emotions about prognosis and not feel rushed to make decisions.
HCPs lack an understanding of patients’ and families’ informational needs during the ACP process
Patients reported feeling they were not fully involved in decision-making processes during their care. This occurred as patients and families thought their HCPs did not know or appreciate what information they required to make informed decisions. Specifically, participants described wanting all the information possible to evaluate options and inform their own care plans. They also emphasized wanting to know their prognosis at an earlier stage and what to expect. Some participants reported physicians not discussing all aspects of their care and many perceived their ACP and goals of care (GOC) discussions were conducted too late in their disease trajectory. Specific aspects of care patients deemed particularly important were earlier access to palliative care and the possibility of transitioning care to home. Some reported a desire for additional discussions on topics such as the changes in medications as they neared EOL. A lack of these conversations deeply and negatively affected patients and families, resulting in distrust and frustration with the healthcare system. One participant described a situation whereby a failure to discuss prognosis and what to expect earlier in the disease trajectory resulted in limiting time with a loved one prior to death.
Participants also discussed how the transfer of information was sometimes impeded by medical jargon. This jargon either had no meaning to the patient or their family, or the term had permeated into the lay population without being properly defined, such as the terms palliative care and ACP. Participants said a common misconception was that palliative care referred only to hospice and EOL care and had no association with symptom management. Most participants had never heard of ACP prior to the study. Those who believed ACP was synonymous with a do-not-resuscitate order did not appreciate that ACP involved discussion of one’s values and preferences for care, encompassing all aspects of treatment at the EOL. Limitations in communication were felt to disrupt the quality of health care that patients and their families received.
Limited access to services and supports
Participants felt they had limited access to the services and supports they needed for ongoing discussions concerning prognosis and future care, including conversations about the extent to which healthcare professionals and healthcare services could be involved. Approximately half of the participants discussed limited access to the psychosocial supports they needed to engage in and support comprehensive ACP. While participants mentioned receiving emotional and psychological support from family, friends, and their communities of faith, they expressed concern with exclusively using their personal support networks as they believed that doing so resulted in additional stress. Both patients and family members discussed these social supports as important to decreasing stress around discussing their values and preferences. At the same time, patients highlighted that formal supports would have been helpful for both themselves and their family members prior to the initial ACP discussion to emotionally prepare them for the conversations. In fact, several patient participants stated their preferences that family members not take part in ACP discussions because family members might react more negatively to these discussions than the patient, require additional supports, and cause the patient additional distress that he/she/they (the patient) would prefer to avoid. Conversely, family participants stated that involvement in ACP conversations relieved stress as they then knew how to appropriately plan for the patients’ inevitable decline in health.
During discussions with physicians, some participants, primarily patients, were referred to formal supports in the healthcare system as part of the ACP process, including counselors, spiritual care and palliative care. However, many participants felt the needed individuals and services were difficult to access through the cancer centers/clinics.
Family members reflected on the challenges aligning care with the patient’s preferences, particularly with respect to the use of home care services and palliative treatment at home. Participants believed these topics were not discussed in a timely manner that would have benefited the patient.
Poor communication between HCPs
Participants discussed their perception that there was poor communication between members of their healthcare teams. This was described in terms of ongoing breakdowns in communication between referring physicians, medical oncologists, radiation oncologists, the palliative care team, and professional psychosocial supports. Patients felt their care was transferred from one specialist / subspecialist with limited handover of patient information (or values). Others described negative experiences where they did not feel that there was any communication between specialists.
Table 1: Patient and Family Views
Overarching Theme
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Illustrative Quote
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Positive attitudes towards ACP
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Advance care planning is what the patient desires for their last phase on this earth and how they wish to leave this world. [Participant 1]
It [ACP] should be brought up hopefully long before a critical time…. And if one (patient or physician) doesn’t bring it up, the other one (patient or physician) should, even for a young person. Like if you go in for a physical…To me, that’s a time to discuss it and certainly with any, not even necessarily critical, but potentially serious medical problem. [Participant 2]
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HCPs lack an understanding of patients’ and families’ informational needs during the ACP process
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There was no plan. He barely got in there (the hospital) and then everything just fell apart. So, it would have been nice maybe if we’d known more about this (the cancer/the patient’s prognosis), maybe he could have had something happen at home and that would have been fine. Or maybe what did happen could have happened for him a little bit earlier so we could have been a little bit more at peace. …And even when they were explaining all this stuff to us, it actually was taking away time that we spent with my husband because the whole family was away spending like an hour or even an hour and a half finding out about it…that really wasn’t the time to find out about. [Participant 3]
ACP means to me; do I want to be resuscitated if my heart stops? And I had asked for and signed a DNR order. [Participant 2]
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Limited access to services and supports
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...it is nice to have the support but sometimes it is almost more stressful having people [family members] there who are getting as upset as you or more. Suddenly then you have to be worried about their feelings.
[Participant 1].
And they [ACP conversations] did help me to know what would happen in the future and how she would progress, and what some of the signs and signals would be from her [the patient]. Like bodily functions and just things like that for me to be aware of so I wouldn't be afraid. [Participant 6]
They [the hospital] have support groups and support workers available. I did have some trouble accessing them at the beginning of my treatment. That is what I kind of had the most need for. And I tried a couple of times to get a hold of them and never heard back and left a message that was forward or something like that. I think that there could be closer relationships between the medical team and the psychosocial oncology team.
[Participant 1]
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Poor communication between HCPs
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Even though it was kind of implied and assured that it was a collaborative approach, to be honest, it seemed more like a step by step – Okay, I’ve done my part, I’m passing the baton.
[Participant 3]
I truly believe that the physicians need to get…they need to get on track with one another. They need to be communicating between themselves. Because they’re not doing that. One physician might know something, a specialist knows something else. But not being a team where they’re communicating together and they’re planning together…. A patient should not have to go to a specialist and take her information with her to the specialist because the physician, the family physician didn’t inform them, or vice versa.
[Participant 6]
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Oncologist Views
Initiation of ACP discussions
Many participants defined their ACP discussions with patients as any conversation involving the topic of disease course, prognosis, treatment (non-curative intent), EOL care, and GOC. These conversations often focused on discussing DNRs, symptom management and quality of life. Participants’ experiences initiating ACP were described as complex processes that encompassed a number of variables, including how family members could influence patients ACP decisions and the timing of the discussion. One of the salient variables was whether patients and families had already thought about ACP. For those patients who had not previously heard of ACP or had not considered what their advance care plan may include, oncologists said they decided on when to initiate the ACP discussion based on their clinical acumen. This clinical acumen was also used to determine the extent of information they disclosed to patients. They discussed that this process is typically determined by extent of the disease, prognosis and how they believed the patient and family would tolerate the conversation.
Navigating patient-family dynamics
Participants discussed that ACP often involved navigating patient-family relationships, which either facilitated the process or significantly inhibited it. As in all aspects of healthcare, there is often not one “patient” and discussions about treatment, GOC, and EOL decisions were often complicated by family members involved in the process. Participants discussed the various dynamics between families that made ACP less or more challenging, including situations whereby patients and families had discussed plans prior to seeing the oncologist and engaging in ACP (facilitating the process) to situations where patients had accepted their illness while their family members had not (hindering the process). Pertaining to the latter situations, some oncologists discussed navigating these conversations by reminding those present that ACP was to determine the wishes of the patient and not others. Conversely, some stated they would not interject as they did not want to cause a disruption in the family or alter the family dynamic going forward. The decision of how oncologists would react to any family pressure were made on a case-by-case basis.
Limited formal training in ACP
Most participants had no formal training in delivering ACP. Participants indicated that medical education around ACP was (during their training) and remains (today) minimal. They described the formal education at the current undergraduate level as primarily involving learning how to “break bad news”, which is not ACP. Oncologists reflected on how they taught ACP to their residents, which was similar to how they were taught, through informal education in clinical settings. Processes were described as clinical learning where individuals witnessed others performing ACP, forming their own “style” that incorporated aspects that the individual deemed to be important or facilitate ACP and disregarding those they thought impeded ACP. Some participants discussed changes that could be instituted to increase training of ACP, including but not limited to simulation and increasing teaching around cancer and its prognosis.
ACP requires a team approach
Participants emphasized that a team approach is crucial in ACP and identified several other members of the healthcare team who are integral to discussing and developing a patient’s advance care plan: other physicians (surgeons and family doctors), allied healthcare (nurses, social work, nutritionists), spiritual care, the palliative care team (if involved), and the psychosocial oncology team. Oncologists viewed the team approach as crucial for a number of reasons, most prominently time constraints and competing clinical responsibilities. There was a unifying view that each member of the healthcare team was important but also that each must play a specific role in ACP as to limit misinformation or lack of accountability. This was highlighted by many participants who discussed that patients can be told multiple, and sometimes conflicting, information. Oncologists identified several activities as being part of their specific role, including sharing important clinical information such as prognosis, helping patients identify goals of care, particularly treatment goals, and referral to other HCPs as warranted (e.g., palliative care, social work, and psychosocial oncology).
Despite appreciating others involvement, some participants were critical about how other members of the healthcare team approached ACP and their specific role in the process. This was largely related to initial oncology consultations with patients who had been referred from another provider without having had a discussion related to prognosis, clinical / pathological results, or ACP.
Participants expressed mixed views on the role of primary care providers (PCP) in ACP. Some participants believed PCP should play an integral role in ACP due to the nature of the patient-physician relationship. Additionally, many commented that ACP would be an appropriate conversation for PCP to be having with all older patients regardless of their health conditions. However, participants also expressed disappointment that such conversations had not occurred in primary care.
Participants expressed positive views on both the palliative care team and their early intervention. They described specifically referring patients to palliative care to further ACP discussions around practical (e.g., legal and financial) issues, even implying or explicitly stating that it would be beyond their scope of practice to have these discussions. Some participants believed it was solely the responsibility of palliative care to discuss EOL care and ACP. Similarly, participants emphasized the role of psychosocial teams (counselors, psychologists, spiritual counselors) to attend to patients’ anxieties and emotional/spiritual well-being. These auxiliary supports were positively viewed as they provided a skillset and training that participants did not feel they could provide.
In contrast to the overall positive attitude participants held towards palliative care and the psychosocial team, the role of nursing was not seen as central in ACP discussions. As one participant articulated, “their (nurses’) role is different but very complementary”. The nursing role was often discussed as an informal role with nurses acting as a sounding board for the patient. That is, nurses were viewed as professionals who can help patients frame questions or seek whether patients had thought about their EOL but were never to discuss prognosis or formalizing advance directives.
Lack of coordinated systems hinders ACP
Participants discussed an overall lack of coordination when it came to the healthcare system and how it functions. This ranged broadly from isolated approaches specialists take during care provision to the need to improve documentation systems. The system itself was perceived to be largely reactive to patient problems versus proactive and preventative. The segmentation of services was described by Participant 8 as “…each one of us putting up silos.” Participants further described the fractioning of the healthcare system as leading to burnout and complacency. Participants described this lack of coordinated systems as hindering ACP discussions and leading to a fragmentation of services, which resulted in increased frustration amongst HCPs. Moreover, participants believed that improved documentation of a patient’s advance care plan would be one mechanism to enable direct lines of communication between the silos that exist between providers and institutions. They felt this would improve both informational, relational and management continuity for patients with advanced disease.
Table 2: Oncologists Views
Overarching Theme
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Illustrative Quote
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Initiation of ACP discussions
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…the majority of my patients, 99% of my patients are presenting with an incurable disease. But they’re treated. I don’t discuss those issues until I feel that there are no more treatment options, or the patients cannot tolerate the treatment and we should stop. Then comes the conversation about advance planning.
[Participant 7]
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Navigating patient-family dynamics
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So that’s the downside of advance planning. It’s actually different for the patient and the family. So, it's actually often much more accepted by the patient. And the patient comes to terms with it a lot quicker than the family. And there's many… You know, one of the difficulties is the patient who comes in here and their family wants to be aggressive, and they don’t.
[Participant 3]
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Limited formal training in ACP
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…so we have a case…We’ve inserted some videos in there. … we’ve introduced the concept. The same method I learned about breaking bad news. So it's in there. It’s the only mandatory reading actually. And then some videos on people doing it well. [Participant 10]
So that’s part of the teaching. I let them carry on the conversation and telling me what they think and how would they approach. But that’s their learning pattern. This is very informal, okay. But it’s with the patient…. At some point they will develop their own style, yes.
[Participant 7]
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ACP requires a team approach
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… somebody shows up and really nothing has been done, and then I look in the system and I’m like, you know what, this person has seen like 3 surgeons, has seen the rad onc [sic], has seen all these… What were they all doing? You know, why should it be left to me to fix everything in one appointment? Well, I cannot fix everything in one appointment. So I prioritize and I try and do what I can. But if I can’t get everything done in one appointment, especially in someone who I know has been seeing lots of other people, well, they’re going to come back to see me. [Participant 8]
What’s very interesting is they [patients] can be 90 years old and they’ll have never talked about it [ACP]. Which again, it doesn’t matter if you’ve got cancer or not, the fact that no family physicians ever brought it up with them either is interesting.
[Participant 10]
It’s always proven that the early involvement of a supportive care team or a palliative care team has such a huge impact in terms of patient satisfaction but also in terms of management issues in terms of quality of life and even in terms of survival.
[Participant 6]
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Lack of coordinated systems hinders ACP
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It would be helpful to have one provincial approach that’s appropriately communicated to all healthcare providers so that we can consistently in the same way communicate to patients and family members….There should be one source of documentation, right…That we have that advance care planning documentation on there so that with one click, we know. Right now we have to go to 5 or 6 different health records, and then we still may not get it.”
[Participant 6]
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