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A Physician's Perspective on "Shifting to Palliative Care: Help Us Change our Pace"
Jessie Gruman | June 20, 2012
Jessie C. Gruman, PhD is president and founder of the non-profit organization Center for Advancing Health. Her experiences as a patient ' having been diagnosed with five life threatening illnesses ' informs her perspective as an author, advocate, and lead contributor to the Prepared Patient Forum blog. Her most recent book, AfterShock, helps patients navigate their way through the health care system following a serious or life-threatening diagnosis. You can follow her on Twitter at @JessieGruman. More'
Last week's essay, Shifting to Palliative Care: Help Us Change our Pace, provoked the following commentary from my friend and colleague, James Cooper -- to which I responded.
James Cooper, MD, FACPM, is a Clinical Professor of Medicine, Division of Geriatrics and Palliative Care at George Washington University. His practice is associated with George Washington University Medical Center, in Washington, DC.
James Cooper: Dr. Gruman's homily is so beautifully written that I feel a little guilty reacting to it. But believing she wishes to expand the conversation, I can't hold back. First, I would quibble with the components of the medical machine.' It is a mistake to leave out the patients who ask for, accept, or decline the diagnostic and treatments offered.' They are an essential part of the machine.' And of course, the payers have impact on most medical transactions, and when you think about it, that includes just about everybody.
Jessie Gruman: Ah yes.' But from our perspective --- that patient's perspective -- we feel like we are nameless little coke bottles being filled in the bottling plant.' We aren't part of the machine - we are the REASON for it to exist generally, but we are not part of it; we are interchangeable products, no more part of the medical machine than the coke bottles are part of the bottling machinery.
James Cooper: More importantly, it is not a failure when a person with a terminal disease steps out of the intense, agonizing, often frantic search for a cure. Death is not a failure; it is simply part of life.' ' If one insists on making this a contest, the failure is not one of the machine defined as clinicians, tests and assorted medical procedures.' It would be a failure of the person to conquer the disease. The machine can help the person sometimes, but not always.' In spite of efforts to depersonalize the condition, the disease belongs to the patient.
Jessie Gruman: Again ' this is not for you to say.' We take drugs in the expectation that they will cure or ameliorate our disease.' When they don't do this, we feel like they have failed to accomplish their aim. I don't think this is an idiosyncratic construction and I am surprised that you read this as a such an affront.' I am reflecting the perspective of the many patients I have talked to for whom this is a simple concept.
You, as a physician, don't define it is failure when a drug doesn't work. Indeed, isn't the usual construction physicians use one in which the patient has 'failed treatment?'' Just how partnership-y is that, sir?
James Cooper: Clinical Trials.' While some people enter clinical trials in the hope they will be in the treatment arm and be among the first to receive a breakthrough cure, I think most understand that is unlikely, but they will contribute to the understanding of the disease, and that likely will benefit their children or grandchildren.
Jessie Gruman: Ah.' Well, the people who have talked to me about their experiences in clinical trials don't see it that way, although they can parrot what they have been told by their doctor.' They then go on to talk about how they hope that blah, blah, blah.' I just watched a friend enter a trial to test whether the pill or liquid form of a chemotherapy was metabolized (or something ' consider the source) more efficiently.' No effect expected on his advanced rectal cancer.' Eight weeks later he reports that the drug failed to have any effect on his rectal cancer and he is devastated.' His is only the most recent story like this.
James Cooper: Our clinicians can help us.' I am glad to see this return to the concept of a partnership between the patient and clinician.' It is an old concept - very old.' It has been diminished by the brightly blinking and alluring advanced technology.' It has also been diminished by the polarization produced by critical essays that reflect nothing of the true complexities of the machine-the expanded version of the machine.' It is good to focus on the inherent team of the patient and the clinician at the point of care.
Jessie Gruman: I don't think for a moment that most patients have taken their eyes off their physician (alas, still ALWAYS physicians ' no NPs in sight) as the person who holds the keys.' I don't seem to run up against that many really angry patients, at least in my interviews.' This deep connection and dependence remains strong.' Much as I , like you, would like to see this as a partnership, I think that most people have yet to shift to that mutual / shared project approach.
James Cooper: (We will be better off if our care team is) more explicit and concrete...about our roles and expectations.' I would not advise expecting the palliative care team to be explicit about our (patient and family) roles.' Our roles should reflect our spiritual, intellectual, and emotional resources.' A key element of good palliative care is to find out what the patient wants, not to tell her what she needs.' The best way for clinicians to find out is for the patient to tell them.' If you expect clinicians to tell you what to think and how to act, or how long you have, you will be disappointed.' Such unrealistic expectations may lead unfairly to a critical essay, which may tilt people to more polarization, and erode the partnership.
Jessie Gruman: Oh nonsense. I said that this takes place in the context of patient aims established when this shift from active to palliative care takes place (as though there is a bright line').' You can say 'I know you want to be awake for part of the day so you can see your kids 'we really want to get the right balance of medication so you can be alert and pain-free, so keep a close eye on that and let us know so we can make adjustments.'' 'You know, you may not need to do those arm strengthening exercises with the soup cans if it feels too difficult.' 'You can expect that you are not going to have much of an appetite for a while now.' If there is something that you really would like to eat ' like ice cream or Reese's Peanut Butter Cups, I say go for it.'' 'You may be really unsteady on your feet because of the drugs and we don't want you to fall.' Can you guys arrange to make sure that you have help when you need to go to the bathroom?'
THOSE are the expectations we need to understand.' THESE are the behaviors we need help with now: what to attend to' -- how can we help ourselves, how can we help you ' how can we manage this time.
James Cooper: The medical machine, and here I would include the faith community, can be a partner along that final pathway when a person chooses to accept the emerging reality.' It can be a rewarding partnership.' Let's work to continually improve it, as partners.
Jessie Gruman: I find it puzzling that you argue with this representation of the patients' perspective, which is based on interviews with hundreds of people.' You can RESPOND to this, but you can't argue with it.' Of course we will be better off if we are able to feel there is a partnership, if we understand that when drugs don't work it is not OUR failure (ahem) nor the DRUG's failure, but rather one more of process.
Look at what I represent here as how many people view this situation when they arrive at the point where active treatment is no longer what they choose to pursue, what do you think you can do to help us experience it differently?
We are already doing the best we can.
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More Blog Posts by Jessie Gruman
Jessie C. Gruman, PhD is president and founder of the Center for Advancing Health. Her experiences as a patient — having been diagnosed with five life threatening illnesses — informs her perspective as an author, advocate, and lead contributor to the Prepared Patient Forum blog. Her most recent book, AfterShock, helps patients navigate their way through the health care system following a serious or life-threatening diagnosis. You can follow her on Twitter @JessieGruman. | More about Jessie Gruman
Comments on this post
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|John Lynch says|
June 20, 2012 at 6:44 PM
I appreciate the good doctor's intentions, but find it unrealistic to expect patients to become partners in their end-of-life care when most have not played such a role throughout their lives. It does come across a bit as trying to shift responsibility to patients when the reality is that the default in medical care generally takes control as patients and their families are often unable to cope with, or even understand, their true choices.
That default varies wildly among medical institutions and undoubtedly much of it is well-intentioned (not to diminish the financial gains involved). Having just published a brief report on this subject, I believe that if dying patients and their families understood the trauma that aggressive end-of-life care inflicts on already compromised patients - and the likelihood it will shorten rather than extend their lives - these agonizing decisions would be somewhat less agonizing.
This is a failure of the medical community to so enlighten these patients and families, not a failure of the patients themselves.
June 22, 2012 at 10:41 AM
this is a lovely (in its crafting) but tragic enactment of the gap in perspectives which rules too much of our health-care.
thanks for your many efforts to make these matters explicit and humane, there are passionate and yet thoughtful interests at play and you exemplify the best of them.
|Jessie Gruman says|
June 23, 2012 at 11:44 AM
Thank you both for your thoughtful comments.
Jim Cooper and I have been good friends for years and usually we duke it out on topics like this in person over coffee. This exchange (which continued but became too long to post) illuminated for me the difference in our perspectives that I think we both gloss over in the interest of keeping the conversation moving but which are actually quite profound.
Some days (not all days, but the day we went back and forth on this particularly) I am awed by the magnitude of the task of building true, meaningful partnerships between us and the professionals with whom we work to stay well or get better: the complexity of the barriers, the late effects of ancient traditions, the slipperiness of the language.
I am fortunate to have a Jim as my friend: some elements of good partnership are patience, the willingness to figure it out, and the ability to not to walk away when you don't agree.
June 25, 2012 at 10:01 AM
indeed, the mistake we all is make is to personalize interactions/attitudes that are not solely personal ( tho they need to be owned by persons to be changed), and so good to have living examples of these struggles and commitments made publicly available,
these difficulties are at the all-too-human heart of the post-modern philosophies that are often caricatured in their use by friends and foes and really need this kinds of personified exchanges to make them accessible and hopefully engaging to the general public.
One might also hope against hope that all of our professionalized ethicists will take note.
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