Table 1 Patient and Family Views

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]