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Interventions in Dying Chapter 7 Interventions in Dying The title – The Death of Cancer – is nothing if not provocative. And the subtitle elaborates: After Fifty Years on the Front Lines of Medicine, A Pioneering Oncolo- gist Reveals Why the War on Cancer Is Winnable – and How We Can Get There (2015). The lead author, American physician Dr. Vincent T. DeVita, Jr. (1935–), writes that he has seen the war on cancer “from every possible angle: as re- searcher and clinician at the National Cancer Institute, as the longest-serving director of the National Cancer Institute, as physician in chief at Memorial Sloan Kettering Cancer Center (mskcc), as director of Yale University’s Cancer Center, as president of the American Cancer Society (acs), and, most recently, as a patient myself” (DeVita and DeVita-Raeburn 2015: 6–7).1 DeVita’s conclu- sion is simple: “We are winning this war” (9). There is much truth to this state- ment. But the larger argument of DeVita and his co-author, his daughter Eliza- beth DeVita-Raeburn, is more controversial, namely, that at least in the contemporary United States, many cancer patients are losing their lives less because of the disease itself than because of the complex bureaucracies sur- rounding the disease, the timidity of review boards and the Food and Drug Administration, and physicians who “won’t stand by their patients or who are afraid to take a chance” with potentially risky treatments (32). For DeVita and DeVita-Raeburn, it is all about responding aggressively to an aggressive disease. DeVita is explicit about his strategy of “buying patients time,” not so they can get their affairs in order, but so they can be kept alive to take advantage of the next experimental treatment. He asserts, “I’m an aggres- sive doctor. I will do whatever it takes to cure patients and, if that isn’t achiev- able, keep them going as long as possible” (17). DeVita gives the example of his friend Lee, who after being diagnosed with a particularly aggressive form of prostate cancer, told DeVita he was willing to do “anything” to buy himself an- other decade. And DeVita did everything in his arsenal to keep Lee alive. But DeVita describes being hampered by “bureaucracy and its attendant inertia” and by “regulations and research protocols” that stood in the way of more ag- gressive therapies (23). DeVita depicts Lee’s death, after more than a decade of considerable medical intervention, as a direct consequence not of his disease but of the medical establishment’s refusal to give DeVita access to a new drug, 1 Vincent DeVita co-wrote The Death of Cancer with his daughter Elizabeth DeVita-Raeburn, but the book is narrated in the first person from his perspective. © koninklijke brill nv, leiden, ���� | doi:10.1163/97890044�018�_01� Karen Laura Thornber - 9789004420182 Downloaded from Brill.com09/29/2021 08:25:49PM via free access <UN> Interventions in Dying 387 abiraterone. Although initial studies had demonstrated this drug to be remark- ably successful in patients with late-stage prostate cancer, current studies were being done only on patients with less advanced forms of the disease. So, De- Vita writes, instead of receiving this drug and gaining a new lease on life, Lee went into hospice and died within weeks. Exactly two years later, in September 2010, the drug company that manufactured abiraterone made it available to anyone who needed it, the medication having proven exceptionally effective in further clinical trials. DeVita terms what happened with Lee a “near miss,” and he uses his experience as proof that “we need a treatment to keep the patient going so he can reap the benefits of the next new thing that will come along” (31).2 Yet like many health professionals, DeVita downplays the impact of such aggressive treatment on the quality of the lives that are prolonged, and he does not adequately address what the individual patient might want and whether a physician can be too aggressive. DeVita declares that because of his efforts, his friend Lee enjoyed for more than a decade an “excellent quality of life with a nasty prostate tumor” (32). And to implore physicians not to give up on their patients, DeVita gives the convincing example of a patient he encountered early in his career, a teenage girl who had been given such a large dose of vin- cristine for her leukemia that the nerves to her respiratory muscles had been paralyzed. DeVita admits that he was “shocked that she was being kept alive,” and he was not alone; virtually everyone at the hospital where she had been admitted “thought that giving up on patients like her was the humane thing to do” (59). But when despite all predictions she pulled through and achieved complete remission from leukemia, DeVita describes himself as learning “nev- er to give up on anyone” (59). Moreover, DeVita is understandably frustrated with physicians who refuse to treat people with advanced cancer who are desperate for treatment because doing so would be too much of a hassle, because they worry about being sued, or because they are intent on maximizing their incomes (26, 113). And certainly there are many patients such as DeVita’s friend Lee who will do anything to delay death and are not deterred by even the most life-altering side effects. But DeVita outright dismisses physician colleagues who are concerned with “what we were putting [patients] through” and who fear that their patients will suffer “severe side effects” from toxicity. Instead, he claims, “the truth is that a person facing imminent death has an entirely different perspective” (112–113). 2 What DeVita fails to mention is that patients treated with abiraterone lived on average only 3.9 months longer than they would have without the medication (Jauhar 2015). Karen Laura Thornber - 9789004420182 Downloaded from Brill.com09/29/2021 08:25:49PM via free access <UN> 388 Chapter 7 In fact, although many people facing imminent death are desperate for medical heroics and an aggressive physician such as DeVita is precisely whom they need, many others have an entirely different perspective. These latter individuals have little interest in extending their lives in the manner DeVita describes. What is startling about The Death of Cancer is its virtual silence re- garding either palliative care or hospice care – the former is mentioned not at all and the latter only in relation to Lee.3 As cardiologist Sandeep Jauhar writes in his review of DeVita’s book, “Perhaps at some level DeVita should be applaud- ed for not giving up on a patient, a friend. But he also has a certain narrow- minded focus that is perhaps no surprise. He is a general on the front lines of a war…. Still, aggressiveness doesn’t always serve patients in the best way” (2015). This is the very point made by hospice and palliative care physician Joanne Lynn: “It makes me shudder to think how often we caregivers inflict terrible suffering as we thoughtlessly pursue correction of a physiological abnormali- ty” (1993: 44).4 Remarkably, what prompts Lynn’s comment on the “thoughtless pursuit” of correction is not her use of a cutting-edge experimental treatment but instead a deceptively simple gastronomy tube she inserted into an octoge- narian patient with Alzheimer’s-type dementia who had forgotten how to swallow. Lynn thought she was helping the patient. In contrast, his wife and caregiver considered Lynn’s tying this man to the bed a “deeply offensive abuse” (43). Lynn quickly realizes the “impropriety of intervention” in this case and notes that working with patients forces health professionals to “enlarge the 3 The one exception is DeVita’s observation that in 1945, the newly renamed American Cancer Society (formerly the American Society for the Control of Cancer) spent its limited resources on helping patients find the right doctors and “hospice-like resources” (2015: 126). Although palliative care and hospice care are often conflated, and both are focused on relieving symp- toms and increasing the comfort of seriously ill patients, hospice care is for patients with a life expectancy measured in months. While patients receiving palliative care can also receive curative care, those receiving hospice care cannot. Palliative care has been demonstrated to improve both the quality and length of life. For a summary of recent progress see Ruder (2015). See also Khullar (2017a), who discusses both the increase in availability of palliative care in the United States overall (up 150 percent in the last decade), and the disparities that remain by race, income, geography, and type of disease. For instance, about one-third of people with cardiopulmonary failure die in the intensive care unit, compared with 13 percent of people with cancer and 9 percent of people with dementia. Furthermore, many palliative care programs in the United States are underfunded and understaffed. To date, most pallia- tive care has been hospital-based, but home-based palliative care is making inroads (de Marco 2017). See also Livne, whose Values at the End of Life: The Logic of Palliative Care (2019) examines the tensions among financial considerations, emotional attachments, and moral arguments behind end-of-life decisions in the United States. 4 Lynn has published a dozen books and hundreds of articles on palliative and end-of-life care. Karen Laura Thornber - 9789004420182 Downloaded from Brill.com09/29/2021 08:25:49PM via free access <UN> Interventions in Dying 389 scope of what could count as optimal care” (44).5 In other words, Lynn – unlike DeVita and even Jauhar – does not equate “giving up” on extending a person’s life with “giving up” on the person.6 Instead, Lynn’s approach keeps people who are dying, and their desires, the central focus of her practice.
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