JCO has a paper looking at prognostic acceptance in cancer patients, and its relationship with well-being. It's a Canadian study, involving 380 patients with advanced cancer (enrollment criteria including having an expected prognosis of under 6 months and being aware of the incurable nature of their cancer; this number is out of 920 who met enrollement criteria - the rest declined or died before the interview could occur; about 40% declined from the beginning and one wonders if these were disproportionately people who weren't doing well). They were interviewed about a lot of things, including whether they accepted their incurable cancer vs. not (based on answers to a question, in a semi-structured interview, of 'Do you feel you can accept your situation and come to terms with all that is happening?' They compared patients who endorsed acceptance (most of them; 74%) with those who didn't.The results are relatively straight-forward. Non-acceptors were younger, were more likely to have above-high-school education, and were more likely to have (based on concurrent screening during the research interview) depression and/or anxiety. No surprises there (well, while the 'above high-school education finding has not been a strong trend in this sort of research it's not a shocking finding either).
More interesting is the semi-quantitative part of the paper, in which they describe how these patients discussed their coping (or lack of). It's a like a mini-primer of how our patients cope or struggle with facing their deaths. It mentions an aspect of this that I've been thinking about a lot lately based on several patient encounters - the role of having family members who also accept their illness in helping people cope. It's a uniquely lonely place - to know you're dying - and not to have anyone who you can even mention that reality to or discuss it in a straight-forward way. There are many flavors of this: loved ones too gobsmacked by their own grief to be able to engage with the patient him/herself about what's going on, loved ones whose only response is to say 'don't think about it,' 'keep positive,' 'you'll beat this you're a fighter,' 'pray.' All those strategies are part of a healthy coping package for most people of course, but aren't sufficient for those who Know and want to connect with loved ones about what this all will mean. This stuff, in isolation of any other space for discussion, seems like a kind of 'positive-only' form of emotional distancing, and I've had many patients complain to me about it. A similar thing can occur with clinicians as well - ignoring the elephant in the room (the fact that the patient is dying) and talking about the scan results, or the next treatment steps. I'm curious if readers often find themselves in this position - realizing you (the clinician) is (at least temporarily) the only individual with whom the patient is able to talk about what they actually want to talk about.
9 comments:
This reminds me of an interesting book I’m reading: Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America. The author, Barbara Ehrenreich, points out how positive thinking has become rampant in medicine, business, and religion.
A dear friend of mine died of leukemia this year. Her death may have been inevitable, but I believe her chances of survival would have been much greater if she hadn’t focused exclusively on alternative therapies for the first year after her diagnosis. Right up until the end her “support” group was encouraging her to visualize pac-men eating those cancer cells. If she had had more freedom to share her thoughts and fears about death, her passing might have been easier both for her and for those who loved her.
I am really thinking what we need right now is another Ars Moriendi cultural revival like in medieval times when the Plague took so many lives. There is no 'Art in Dying' anymore in our culture at large. It is such a special important moment in one's life it seems odd so many should be so unprepared for it. Kind of like an arranged marriage that you don't want to happen but when it is only a few days away you resign yourself to the cold hard facts.
Jan,
I have not heard the Pac-Man analogy before. (And a funny thing too when I typed 'Pac' I accidentally typed 'Pca' which would bring a whole 'nother meaning to the term.
Jan - I had heard rumor of that book and plan on reading it. My understanding is that it's a further exploration of some of the ideas she wrote about (see my post about this from a couple years ago: http://www.pallimed.org/2007/02/barbara-ehrenreich-vs-hope.html.
Re: your friend. My own feeling about this is that there are absolutely some people for whom these coping strategies are the only ones they have, and certainly it does people no good to destroy that (not that I think that's what you were suggesting to do). There are as many people, however, who are desperate to talk with others about What's Really Going To Happen, to share their darkest fears and discuss the reality of their impending death. These are the ones who are done such a disservice by the cult of hope - who look for people in their lives to reach to about this, and find nothing but a wall of Keep Positive. I think clinicians can fill these roles, to an extent - lord knows there are plenty of oncology nurses out there who play this role, late at night in the hospital, when no one's around, and I know I do this at times as well, although get queasy when I realize god I'm the only one they've said this too.
Christian, I couldn't agree more. How about a We Are All Going To Die Let's Get Used To That Idea And Talk About It Like Adults movement.
What I find to be most difficult is that oncology is almost ALWAYS (at least in our office) a family visit. I find it to be a rare and precious time when I can speak to the patient alone. Within that construct, I do believe that patients put on the show that they believe their wife/husband/son/daughter wants them to provide.
I have, not commonly, but also not infrequently, had the opposite experience. A patient who is actively dying refusing to acknowledge the slow and relentless decay. A wife/husband will pull me aside and tell me that they know that he is dying, and they feel at a loss because of the lack of acceptance. I do believe that can be a great drain on the care-giver. They want to support their loved one, but are also able to see the reality of the situation.
Celeste,
The 'visit alone' is a interesting phenomenon. It seems the time you need it most is the time when it is hardest to get. It has been a theme for me over the past couple of months in trying to break through a protective shield of family and friends who are all well-intentioned but nevertheless may prevent the peeling back of the onion layers.
Celeste: great point. In my experience those situations (the family pulling you aside to have a hushed conversation in the hallway, for instance) are more common than the patient who wants to talk with their family but can't because of the wall of positivity. That said, these situations can easily be blended - families and patients mutually protecting each other from what everyone knows what is happening, and want to talk about, but can't because of the perceived importance of putting on a good face. It happens with clinicians too - particularly oncologists - they've been used to cheer leading their patients to get them through tough treatments and maintain hope; when this is no longer viable (because the treatments aren't working any longer, etc.), you see patients sometimes trying to protect their oncologists by remaining positive, 'game,' even when they know they're dying, are fed up with everything, and really would prefer to talk about What's Really Happening. It's easier for us in palliative care, in many ways, because we often don't have this prior relationship with the patient - there is no major role shift for us - and they don't need to feel like they'll disappoint us if they say they're done.
Your voices are echos of mine.
I truly believe that as complex human beings we are able to hold both "hope" (of relief of pain, recovery, stabilization, reconciliation) and "the possibility of death" in our hearts and minds at the same time. Speaking of death and dying does not need to diminish "hope" : but instead be open to all of the possibilities of what might unfold for the patient, family and health care providers. Of course the conversations are always in a respectful, non-judgmental atmosphere of support and care.
However, of course the word "hope" itself is full of interpretations!
I've been following palliative care blogs for years, this is my first comment ever.....on any blog...on any topic.
I look forward to participating in your important work here as I begin my new social mission.
www.livinglifedyingdeath.com
Thanks for courage to begin.
Jennifer,
Welcome to Pallimed and to the blogosphere with your new site and blog. I think you will find many palliative care and hospice providers who would agree that hope and discussion about death are not mutually exclusive. We hope you find some stimulating conversation and resources here. I have just subscribed to the RSS feed of your blog.
Christian ~
Your site has always been a source of excellent information. Since leaving the Hospice Palliative Care Unit where I had worked, to start my conversation network, I have missed the day to day community of end.of.life care professionals.
Thanks for the warm welcome into your community.
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