Background
Methods
Research design & data collection
Participants
Analysis
Results
Overarching Theme | Illustrative Quote |
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Positive attitudes towards ACP | 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] |
HCPs lack an understanding of patients’ and families’ informational needs during the ACP process | 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] |
Limited access to services and supports | ...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] |
Poor communication between HCPs | 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] |
Overarching Theme | Illustrative Quote |
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Initiation of ACP discussions | … 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] |
Navigating patient-family dynamics | 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] |
Limited formal training in ACP | … 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] |
ACP requires a team approach | … 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] |
Lack of coordinated systems hinders ACP | 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] |