Means That Prognosis Is Poor
The researchers interviewed patients and caregivers about their perceptions of palliative care. Participants from both groups described palliative care as being synonymous with end-of-life care.
One study participant associated palliative care directly with death, “It means death to me. It does. The end.” Comments from other participants expressed the same dim outlook regarding prognosis when palliative care is initiated. “The nurse looking after him took him on another floor. That’s where the palliative are. People are here to die, or they’ll never get out of here or something like that.” “Well, when you think palliative care, you think the person’s on death row.”1
No hope Palliative care was interpreted as a passive modality; the care you get when nothing further can be done. The patient is dying and there is no hope left. “Because when it comes to palliative, they’re always sad that they didn’t help, that all is over.” “The stage of palliative care, hope is kind of more or less gone.”1
For the bedridden Patients described palliative care as care provided when a patient is bedridden and so incapacitated that self-care is impossible. “I guess palliative care is when you’re pretty much at that stage where you can’t take care of yourself anymore.” “When you think palliative care, you think bedridden, unable to look after yourself on any level.”1
Comfort care Most of the patients and caregivers did understand that palliative care was really comfort care; however, they still had misperceptions regarding prognosis. “I thought, what the heck is that? Then I realized they’re just trying to keep you comfortable until you die. Can’t ask for any more.” “Our impression, or my impression at least, of palliative care was sort of keep them doped, keep them comfortable, make them as comfortable as you can before he goes.”1
For many patients and caregivers, their only prior familiarity with palliative care was if they had had relatives or friends who received end-of-life care, and for whom they said palliative care was the last resort. Some participants said they tried not to think about palliative care, because the thought was negative and frightening. Others admitted they had no idea of what it actually was.
A BETTER UNDERSTANDING
At the end of the study period, patients’ opinions changed for the better. Participants in the intervention group were more receptive to palliative care after having received it. One patient in the intervention group said, “I certainly don’t now see it as I’m in the final box or the chamber.”1
“I see that it now comes on in an earlier stage of my treatment.… Earlier stage, rather than palliative care as in when they’re no longer treating you. So this is palliative care while they’re still treating you,” is how one participant explained it.1
Patients and caregivers in both groups shared thoughts on how they make palliative care seem more appealing. “Well, I think just in my own head, just to make me feel more comfortable, I referred to her as my ‘medication specialist,’ as opposed to my ‘palliative care doctor’ vs my ‘oncologist,’ right? … [To others] I say that I’m seeing my ‘medication specialist.’ Sometimes if they ask a little more, then I will say that she is actually in the palliative care department, but they branch out a little bit, and they deal with people like me.… Why? Because if I told people I was seeing a palliative care doctor, they would think I was going to die in a few weeks or months.”1
Some participants in the intervention group proposed calling palliative care supportive care.1 However, the authors do not believe a new name is going to change the stigma associated with this type of care.
“A name change may be considered, but would achieve nothing without a fundamental shift in the manner in which palliative care is practiced and portrayed,” concluded the study authors.1 They call for better educating the public, patients, and health care providers to correct the misconceptions surrounding palliative care.
1. Zimmermann C, Swami N, Krzyzanowska M, et al. Perceptions of palliative care among patients with advanced cancer and their caregivers. CMAJ. 2016;188(10):E217-E227. doi: 10.1503/cmaj.151171.