And it’s a damned good thing. The problem is, thanks to politicians pandering to fringe idiots who for some reason often seem to have them quaking in their boots these days, the provision in the health care law providing incentives for doctors simply to find out their patients’ preferences for end-of-life care was removed. So, what we are left with is a recommendation by one small organization – the American Society of Clinical Oncology - that maybe it would actually make sense to do this anyway, because of the pain and grief it would help relieve (separately from any economic considerations, but dovetailing conveniently with them). A good place to start is with newly diagnosed terminal cancer patients:
…despite many advances, the fact remains that in the vast majority of cases, these interventions control disease by months, rather than years, and efficacy measured in terms of disease response or time-to-progression does not always translate into improvement in patient quality of life or survival. Further, in many settings, including late lines of therapy for most cancers, we simply have no options with clear evidence of benefit, yet all interventions have some chance of toxicity and detriment to quality of life. Given these limitations of current therapy, treating the cancer should be viewed as an option for discussion rather than a given.
To their credit, the authors representing the ASCO choose not to hide behind patients’ wishes, as important as those are:
Although our goal should be to provide care consistent with our patients’ preferences whenever possible, oncologists should feel no obligation to provide an intervention that clinical evidence and the clinician’s best judgment suggest will provide no meaningful benefit to the patient and may cause harm.
This is a key point that politicians probably have no choice but to steer clear of. It’s good that these doctors don’t, because it’s a difficult truth. While traditional care in which doctors dictated to their patients has been rightly put behind us as too paternalistic, we have swung too far in the other direction, in which patient advocacy is promoted to the point in some cases where doctors are reluctant to offer their medical opinions strongly enough. Yes, it is the patient’s responsibility to know where she stands on treatment options and how they relate to her quality of life, but the internet is not an appropriate substitution for medical school, and we need to remember who in the room actually has earned a medical degree.
To those who would object that the above suggestion does not offer enough patient choice, the authors make a key point:
Some patients will wish to pursue any possible anticancer intervention, even in the last weeks of life, but such treatment should be the result of an informed choice, rather than a consequence of failure to realistically address prognosis or the limitations of current treatments.
This is the type of nuanced, logical thinking that is lost in a shrill political debate that exists only to score points against the opposition, and the loss is tragic for the millions who may experience a more painful and distressing end to their lives because of it.
So the question remains: although financial incentives have been removed that would have encouraged more primary-care doctors to discuss end-of-life concerns with their patients well ahead of time, when the discussion can be the most rational, will oncologists follow the lead of their national organization and try to pick up the slack after a devastating diagnosis? Waiting until this point to have the conversation isn’t ideal, but it still appears to enhance quality of life for patients.
And, the estimate of oncologists currently having frank conversations with their advanced-cancer patients about their prognosis is a pathetic 40%, according to the authors of the paper. One very human reason for this is the reluctance of doctors to present a prognosis that leaves no room for hope, as detailed by Atul Gawande in his insightful and sensitive New Yorker article on the problem. But this is not really the fault of doctors. In fact, their discomfort with discussing death is clearly rooted in our society in general, a culture of people who love to “fight” low odds – from “Rudy” to anyone buying a lottery ticket – war metaphors and all.
Ironically, it is our recent medical advances that have given the impression to so many of us that death is not a natural event, but something to be endlessly “battled” with never-ending treatment (“patients are increasingly receiving chemotherapy within the last 2 weeks of life”). When it isn’t cheated, it is crucial that we have “done everything we can” or it must be someone’s fault. Certainly defensive medicine due to tort law has an important role to play here (how many doctors have been sued for doing too much?), but surely our belief in the right to sue when someone dies comes partly from constant immersion in a culture in which death from a disease is invariably described in an obituary as a “lost battle” – as if it is a battle that could have ultimately been won.
This belief is not only supported by unrealistic tort laws, but has been crazily incorporated into the dysfunctional insurance system itself, because
…the current reimbursement system strongly favors intervention over prolonged discussion. There is a misalignment of incentives in the current health care system that inadvertently encourages administration of cancer-directed treatment at the end of life rather than the time-consuming, emotionally challenging discussions that emphasize candor, comfort, family, and quality of life.
But modification of tort law and insurance policy alone would clearly not so easily fix this cultural imperative to keep fighting, because right now, even though people who are happy with their or their family members’ care are a lot less likely to sue, evidence is accumulating that the overtreatment of terminal patients can often reduce both life span and quality of life. Thus, we are stuck in a completely dysfunctional system, costing us a lot both in treasure and happiness, because we think it’s morally wrong to plan ahead of time for the inevitable, because we can’t acknowledge it as inevitable.
I hope more oncologists take heed of this paper, and think a little a bit harder about the conversations they are having with their terminal cancer patients. The authors fortunately provide a starting point for helping doctors to do a better job of considering more objectively the position their patients are in, and discuss it frankly, but I fear that without a change in the culture at large, they are facing a daunting challenge.
This is one of so many areas in which it is well past time for Americans to get over their constant attitude of entitlement that is ultimately so self-destructive. This paper represents one of the ripples of change here and there that pop up occasionally and seem promising, but is our societal inertia too great to be able to change course? If so, we will soon be bankrupt, both financially and morally.
Harrington, SE, and Smith, T.J., 2010. Providing palliative care and
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Peppercorn JM, Smith TJ, Helft PR, Debono DJ, Berry SR, Wollins DS, Hayes DM, Von Roenn JH, Schnipper LE., 2011. American Society of Clinical Oncology Statement: Toward Individualized Care for Patients With Advanced Cancer. J Clin Oncol. 2011 Jan 24. [Epub ahead of print]
Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA, Lynch TJ, 2010. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 363(8):733-42.