Tuesday, January 27, 2009
Abandon All Hope
Journal of Clinical Oncology has an Art of Oncology piece about the role of investigational therapies in patients with refractory cancers - specifically arguing that it is very important not to give up 'hope' too soon and to make sure patients are informed about investigational therapies 'positively.' Two, rather remarkable, case descriptions are included, including one of a man with hairy cell leukemia who apparently was told for over 20 years with each relapse that he 'should receive palliative care,' chose instead investigational treatments, and did really well for a long time.
Fine. The cringe-inducing problem here is with their rhetoric around the term 'palliative care' as exemplified best by this palliative care = abandoning hope paragraph:
The distinction between palliative care and participating in investigational therapeutic protocols is the issue of hope. A move to palliative care requires that the individual accept a state of hopelessness. Many patients turn to unproven remedies to restore hope. In the case of investigational therapeutics, the patient is willing to participate in a process that offers not only hope for the patient as an individual, but makes a substantial contribution to the body of knowledge that will benefit patients in the future. Therefore, though there may be a point at which continuing therapy is unrealistic, or when the comfort offered from palliative care is preferable, it is crucial to acknowledge how difficult it is for anyone to know when a patient reaches this point. Breakthroughs, by definition, imply successful treatment in a situation that was previously considered hopeless.Obviously, this is not what one wants to read in the pages of JCO. To play devil's advocate (with myself I guess), it is important to realize that we really do have a problem in palliative care with terminology which is confusing all around, and we haven't been able to fix this (yet). The problem is that there are many (overlapping) flavors of meaning of 'palliative' and 'palliative care':
- A descriptive term which describes the non-disease-modifying-but-hopefully-quality-of-life-improving-ie-symptom-alleviating aspects of medical care (delivered in whatever settings by whomever and without any implication one way or the other if disease-modifying/life-prolonging care is being concurrently given). Similar to, but often used a little distinctively, from 'supportive care.' Not necessarily given by 'palliative care' clinicians.
- A descriptive term to describe a global approach to the medical care of a patient (given by whomever) which is solely symptom-alleviating without any disease-modifying aspects (in certain circumstances such as when a patient is receiving this care near to death some people call this 'comfort-care' or 'comfort-only care'). Not necessarily given by 'palliative care' clinicians.
- Care given by specialist-level palliative care clinicians and teams (which depending on the situation always involves attempts at 'quality of life improving care' but may or may not involve giving or advocating for life-prolonging interventions and under no circumstances should imply one way or the other if disease-modifying care is being concurrently provided or not)
- Heck it's also used for disease-modifying but non-curative interventions as well ('palliative chemotherapy' to refer to life-prolonging but non-curative chemo, a whole range of 'palliative' surgeries)
- I'm sure there are other flavors as well.
An excellent editorial touches on those issues, and goes into much more detail about how the piece is perhaps a wee bit off target, albeit in a polite and less wheezy manner than me above. There is sort of a 'phuleeze' quality to the editorial (as in it's not exactly fair to only use examples about hairy cell leukemia - a disease with fantastic and remarkable treatment breakthroughs in the last decades unlike most solid tumors - as well as suggesting maybe perhaps there is more of a problem nationally with poor quality end of life care (etc. etc.) and not so much with patients being inappropriately railroaded into 'palliative care'?). Maybe? Perhaps?
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6 Responses to “Abandon All Hope”
January 28, 2009
After reading your blog (although not the article itself) I can't help but think that this rather "rah-rah for research" article may reveal a bit of backlash from the investigationalists. Sort of a sign that palliative care has made inroads into their "turf" by offering an alternative approach to "last-ditch" experimental therapies at the end of the cancer road. Truth be told, I (we?)also have a bias, which is to question the "qualiy of life" value of entering a drug trial at this stage, and often communicate that (hopefully gently and respectfully) to the patient and family.
January 28, 2009
That's an interesting point, R. I don't know if it's a turf thing or not, or something more fundamental surrounding 1) conceptualization of hope as something solely dependent on attempts at treating cancer and 2) a lack of comfort with the Gray Zones in which both comfort and quality of life and a 'good death' are treatment goals existing alongside hopes for and pursuit of a cure/life-prolongation. Many patients live here, at least for a time, and part of my objection was with the suggestion that it's an either/or process: pursuing cancer treatments/cures/miracles OR 'palliative care.' It's not, and thank god it's not.
I think as a community we need to be openly and actively supportive of investigational anti-cancer treatments, even Long Shots as 1) our patients are and 2) this is the only way when I get cholangiocarcinoma when I'm 50 I'll have a decent shot of living more than a couple years. We can/should/and do of course should be advocating for honest communication and truly informed decision making (which the vast majority in the research community aim for too), terminal care planning, symptom control, etc. for out patients choosing phase I trials.
January 30, 2009
We had an Oncologist throw the term 'pallative' care at us during our decision about whether to go through a bone marrow transplant.
In that instance I think (hope) it was #4 - do something but don't expect a 'cure'.
When you have a cancer that's pretty much chronic then barring a true breakthrough/miracle like the hairy-cell guy, everything is 'pallative' but you need to be aware that the term has some variations.
January 30, 2009
As an oncologist waiting for her father's funeral, I see a huge break in the minds of most patients between treatment based palliative care and hospice/comfort care. I have recently had several patients, that absolutely refused hospice, despite direct advice that hospice would likely provide greater comfort and longevity, because hospice is viewed as giving up hope and also viewed as limiting the scope of care.
With my my father, I knew he was dying. However, until the end, my parents resisted hospice. Their resistance was induced by a wish to continue to see their oncologist, and because they viewed hospice as an acknowledgment that the end was near. In the end, Dad was on hospice for less than 24 hours. I know that amount of time on hospice is not the desired time, but my father was able to die in home in comfort. My mother is incredibly thankful for what hospice did in that short period of time. I personally wish that she had the benefit of hospice services for a longer time.
I don't know if there is a regional thing, but when I trained in California, it seemed that patients on hospice had a much wider range of services open to them, including testing, surgery (for things like bowel obstruction), etc. I don't know if the funding mechanism for hospice has induced a change or if it is just the way hospice has been established where I live. Truly palliative interventions such as radiation for painful lesions are not funded by hospice, which creates unfortunate gaps in care.
I wish that patients with terminal disease, especially cancers, could be on palliative treatment AND hospice, but the funding mechanism does not allow that -- at least not in my part of the country. Is it different elsewhere? For me, and I think most patients, that failure creates a stark division and a desire to cling to active treatment.
January 31, 2009
Celeste - sorry about your father.
There are some regions which have larger hospice organizations which have the resources and are amenable to continuing certain more expensive therapies which can lessen the disorientating treatment transitions some patients go through going from, e.g., $20k worth of chemo a month with weekly labs, IVF and blood product support, etc. to a partially demedicalized home-based model of care which most hospice organizations provide. Even if that's completely medically appropriate for someone (ie their symptoms, quality of life, and longevity wouldn't be any different or in fact would be worse with all the fancy stuff) the transition can obviously be psychically traumatic, to speak nothing of the whole Hope question as well as concerns for abandonment (whether founded or not). Obviously this is only for some patients, and many actively welcome the 'pulling back.' Ideally we would have a system that meets the needs of both 'types' of patients, whether it's labeled hospice or not.
(FYI My 2.5yo son has been delighting in your blog as I clicked through to it from your profile - all the puppy pics.)
January 31, 2009
In war, each participating country invokes the Divine: "God is on our side." In caring for patients with advanced illnesses we discover that there are opposing forces which both invoke Righteousness. One group finds it unconscionable that another group is taking away--perhaps intentionally--the patient's hope. The other group finds it unconscionable that the first group seeks to instill false hope, or to subject the patient to harsh treatments with heavy burden and limited--if any--benefit to the patient.
Both extremes tend to accuse the other other of preventing the patient from getting appropriate care. Remarkably, both extremes tend to accuse the other of taking away patient choice or interfering in decision-making.
Of course, real life & death are far more complex than either position suggests, but we tend to distill it that way. Either way, the bias of the medical professional gets in the way of honest exploration with the patient of their values, how they are experiencing this phase of their illness, and what are their expectations, wishes, needs, and yes, hopes.
Phase I & II trials have a societal benefit, possibly an altruistic or similar existential/spiritual benefit for the individual patient & conceivably a personal health benefit (it is troubling, though, that after an informed-consent discussion, many patients considering or enrolled in a Phase I study think of it as "treatment"). 5th line salvage therapy benefits (shrinks tumor, relieves symptoms, maybe prolongs life) the rare patient.
But why do we get hung up in the anecdotes? Do we really think they prove our point to anyone other than ourselves? Do we really think they represent "the Truth?" They don't and they can't. Remarkable stories about exceptional people/cases do little more than remind us that there are variables well outside our control, that there are events we can't explain medically/scientifically very well, and that we need to be on the lookout for both forests and trees. Do we ask ourselves if we can distinguish the exceptional from the normal or expected?
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