I’ve got some men in my life who are seriously big eaters. Forces to be reckoned with. Hosting a barbecue for them requires much advanced planning–plus a significant financial outlay at the butcher’s. One’s on the Atkins Diet–again–and watching him down hot dog after hamburger at the last picnic was truly observing a feat. I actually lost count.
I couldn’t claim I was a petite eater without my family laughing me out of town, but I’d certainly rather have one moderate, medium-rare fine-cut of sirloin steak than outdo myself on cow products [and has anyone ever determined, beyond a reasonable doubt, what part of the cow does go into hot dogs?].
It comes down to that age-old dichotomy between quantity and quality, a duality that pervades almost every aspect of our lives, from time spent dating to how much homework is appropriate, to what you want for your jewelry box, to time spent with your children, to number of household possessions–the list goes on.
It’s a duality that happens, additionally, to apply to the days of our lives themselves, and here the issue becomes, well, deadly serious. Particularly when it applies to terminal cancer patients. For while a number–perhaps the majority–of people may accept that there is a sanctity to life, and that each day is precious, for many, in the throes of terrible suffering, prolonging life through additional surgeries and treatments, often with little chance of long-term success, becomes undesirable.
Turns out, oncologists as a group, in contrast to those they treat, repeatedly come down on the side of quantity, of prolonging life, often at the expense of quality of life (not to the mention the dollars-and-sense expense of the treatment, as well). That may not necessarily be a path their patients want to head down, but the process takes on a life of its own.
A study published this past year brought this tension between treater and treated to the forefront of cancer discourse. Under senior author Peter Ubel, M.D., the John O. Blackburn professor of business administration at Duke University business school, a team of researchers surveyed a random sample of 1379 US oncologists, and presented them with 2 different scenarios involving a hypothetical new chemotherapy drug. The first dealt with a cost-benefit analysis in terms of patient survival–how long would a patient have to survive for a costly treatment to justify its expense. But the second scenario is more relevant here.
In it, a patient is expected to survive a year with a current score of 40 on a o-100 Quality of Life scale. Not too great. The doctors then had to determine the highest cost at which they would prescribe a medication that would increase quality of life to 90 on the scale–but have no impact at all on survival.
Found the researchers, “a significant majority of respondents (71.8%) . . .[placed] greater value on. . . life-prolonging treatments than on quality-enhancing ones.”
When it came down to hard dollars and cents, the oncologists stated a willingness to prescribe treatments costing around $245,000 to prolong life for one year, but only $119,000 for treatments that improve quality of life without prolonging it. You don’t need to be a mathematical wizard (lucky for me) to notice that quality of life seems worth less than half the investment of prolonging it.
The findings are somewhat controversial, given that many cancer advocacy groups have been working hard to get out the word that terminal cancer patients care greatly about quality of life, and that it impacts their decisions about whether to go forward with treatments.
Study co-author Dr. Michael Kozminski defended the doctors for the gap between what patients overall may want and what the physicians still push for, in a press release:
I would argue that length of life is a more tangible measure for most practitioners compared to quality of life. Medical trials highlight survival data, clinicians discuss prognosis as a timeline rather than a list of symptoms, and trainees learn about ‘time of death,’ not ‘state at death,’ in our medical schools. Moreover, when a physician develops a relationship with a particular patient, she may take every measure to extend that patient’s life, regardless of side effect profile, because of their shared bond – a documented phenomenon known as the “Rule of Rescue.”
That is all very well and good, but I would argue, given the statistics from Kozminski’s paper, that it’s possible that oncologists have lost sight of the vital importance of quality of life to the patient himself. In the push to prolong life–at the expense of quality–the doctors may have missed that, somewhere along the line, the patients stopped feeling the primacy of living just one more day, and instead wished for freedom from pain, for comfort, for the ability to be well enough to sustain relationships.
In short, several studies indicate that oncologists don’t seem to be listening to the their patients. In “Quality and quantity of life in oncology: What the CT doesn’t tell us,” author Peter Harper, Department of Medical Oncology, Guy’s Hospital, London, emphasizes:
Patients tell us that every month of life is precious if symptoms are controlled. We must be careful to listen to their needs and issues and respond to those and not judge by our own preconceptions. Treat the patient and the disease, not just the disease [italics mine].
Yes, patients are willing to fight for each day–if each day doesn’t bring unbearable suffering. There is a point of suffering, patients are saying loud and clear, at which life is no longer worth fighting for.
Ethan Remmel, an associate professor of Developmental Psychology at Western Washington University, died last year at the age of 41 after a battle with colon cancer. Remmel wrote a public blog about his experiences with cancer, Living While Dying: Learning to Live in the Face of Cancer, and one of his pieces was entitled “Quantity Versus Quality of Life.“
His experience, as written in that post, illuminates some of the concerns raised by Uber’s piece. Remmel writes of his experience,:
I feel that my doctors, family, and friends often weight the first goal (quantity of life), relative to the second one (quality of life), more heavily than I do. They would like me to exhaust every treatment option available. It’s understandable – they don’t want me to die; they want me around as long as possible, and I appreciate that. I don’t mean to suggest that they don’t care about my quality of life, but they don’t know – they can’t know – what my condition feels like to me. . . .I believe that there is a point where the quality of life that can be provided does not justify additional efforts to extend life [italics added].
It’s true. As sympathetic as the oncologist is, she can’t possibly really know what a patient’s condition feels like to him. Thus her decision to expend extra funds and efforts to keep that patient alive may not be at all desirable in the patient’s mind.
To add fuel to Remmel’s fire, in “Comparison of the quality of life of early and advanced stage ovarian cancer survivors,” researchers found that medical staff were less tolerant than patients of suffering and impact on quality of life of nausea, anorexia, diarrhea and rash. They really ‘don’tknow’ what it ‘feels like’–and they’re not all that willing to believe that these complaints: 1) will impact a patient’s decision to act to prolong his life, and 2) are valid to justify the choice to forego further treatment.
Journalist Leroy Sievers echoes Remmel. An Emmy-Award winner, a journalist for more than 25 years, Sievers worked at CBS News, the Discovery Channel, and ABC News, where he was the executive producer of Nightline. Also diagnosed with colon cancer, he, too began a daily blog, My Cancer–written until his death in 2008. Sievers writes,
[Doctors] want to do everything they can to prolong your life…. But after you’ve taken the drugs, or had the radiation, it may not be so attractive. So it comes down to that one basic question: Would you rather have quality of life, or quantity? Is it worth it to live longer, even if the treatments that make that possible also make you miserable? Or would you rather have a better quality of life, even if that means a shorter life?
And he poses the essence of the question, painfully, working to the crux of the matter–and it’s something that doctors can’t ever answer for their patients:
“Is that time [bought by treatment] so precious that it’s worth any amount of discomfort?”
The sense that oncologists are missing the vital role quality of life plays in the cancer patient’s desire to keep fighting is confirmed by “Physicians’ perspective on quality of life: an exploratory study of oncologists.” Researchers conducted 60 interviews with oncologists in Canada and the U.S. between October 1992 and April 1993. The paper focuses on the portion of the interviews dedicated to the topic of physician views on quality of life.
Results indicate that doctors both aren’t aware of the role quality of life plays in the patient’s decisions to continue–or not continue–treatment, and, additionally, may not even understand what patients are referring to when they use the phrase ‘quality of life’ at all.
For example, the majority of interviewed physicians understood quality of life to refer to physical issues, like symptom and pain control, failing to account for the psycho-social domain, and felt that the former was of primary importance in quality of life measurement. However, cancer research and advocacy groups emphasize that dealing with the pain and debilitation and fear of death often triggers anxiety and depression–another layer in the patchwork quilt that is quality of life.
Failing to account for such emotions and affective issues means doctors are missing a vital piece in comprehending their patients’ concerns about life quality
Further emphasizing how the very definition of quality of life seemed unclear to the oncologists, one physician defined it in the following manner, somewhat belittling the concept itself, and perhaps impugning the person who has concerns about his life quality, suggesting it has to do with unrealistic expectations:
It is a relative term that means how well satisfied the patients are with their health status; it is a relative term in that it is usually measured against what their expectations are so it may in fact measure the distance between what their expectations are and what reality is. The smaller the distance, the higher the quality of life. The expectations are usually culturally defined and therefore vary among and between patients.
Such studies could clarify why Uber et al found that doctors valued quality of life as worth less, if a price was put on it, than prolonging life. If it’s a relative term, with no absolute meaning, and can be explained as disappointment as much as suffering–or if it’s a list of complaints the doctor doesn’t fully validate–then it is, literally, less valuable than extra weeks or days.
But perhaps the kicker was oncologists’ understanding of how much of a role the patients’ stated assessments should play in ongoing treatment. If quality of life becomes an issue of such magnitude that continued treatment is called into question, the study suggested that the doctors saw themselves, not the patients, as “entitled to ultimate control over the treatment decision on such a situation.”
That is partially explained by the fact that a small but signficant number of the respondents–14%–‘felt strongly’ that the oncologists should keep control of the quality-of-life decision-making process, since they, as physicians, had more insight and distance into the relative importance it than the patient.
Clearly, if a doctor believes she more fully understands the issues–despite varied proofs that she doesn’t–then she should retain ultimate control over decision-making regarding treatments that can buy time. But where, precisely, does that leave the suffering patient?
While patient after patient draws a line in the sand, claiming that their lives are not worth extending after a certain amount of suffering, oncologists don’t fully seem to have realized the reasons behind those stances–or the importance of respecting them. In a culture where something is made valuable by what you’ll pay for it, doctors have indicated their relative disregard of quality of life by cheapening it on the market.
But it is a patient’s right to say no, to complain that his life stops being meaningful at a certain degree of debilitation, to insist that equal energy should be spent easing his psychosocial suffering and symptomology as prolonging his time on earth.
Trite as it is, sometimes less is, really, more, whether you’re talking about Big Macs (no bun–this is Atkins after all,), or about something as existentially meaningful as the days of your life. And the decision about when more days are no longer more value belongs to the person whose days they are–and to his loved ones–more than to any treater, as well-meaning as she might be.
Harper P. Quality & Quantity of life in oncology: What the CT doesn’t tell us. Oncology 2006; at www.roche.com/med_mb060620ph.pdf.
Hasan Z. Quality of life vs. quantity. Bulletin of the American College of Surgeons 2011; 96(11):23.
Kozminski MA, Neumann PJ, Nadler ES, Jankovic A, Ubel PA. How long and how well: oncologists’ attitudes toward the relative value of life-prolonging v. quality of life-enhancing treatments. Medical Decision Making 2011; 31(3):380-5.
Mirabeau-Beale KL, et al. Comparison of the quality of life of early and advanced stage ovarian cancer survivors. Gynecologic Oncology 2009; 114(2):353-9.
Taylor KM, et al. Physicians’ perspective on quality of life: an exploratory study of oncologists. Quality of Life Research 1996; 5(1):5-14.