Mainstream, VOL LVIII No 45, New Delhi, October 24, 2020
Leah Samples Review of Mangalik, Aroop, Dealing with Doctors, Denial and Death
Saturday 24 October 2020#socialtags
Aroop Mangalik. Dealing with Doctors, Denial and Death. Lanham: Rowman & Littlefield, 2017. 274 pp. $22.00 (paper), ISBN 978-1-5381-2338-6.
Reviewed by Leah Samples (University of Pennsylvania)
Dr Aroop Mangalik wants you to know what it means to live well with a life-threatening illness. Here, “you” refers to the person dealing with a life-limiting disease, the parent of a child with an acute form of leukemia, or even the medical provider who wants to do more than offer treatment upon treatment when they know what the patient truly needs is comfort and care.
Mangalik is a New Mexico-based retired hematologist-oncologist with over fifty years of experience in the United States and India treating patients with blood diseases and cancer. His book, Dealing with Doctors, Denial, and Death: A Guide to Living Well with Serious Illness, addresses the culture of dying in the United States, a culture defined by denying death at all costs even at the expense of the terminally ill patient’s quality of life. Mangalik takes as his central problem the question of why patients are encouraged to undergo painful treatment when they are unlikely to benefit from that treatment in the long run. According to the author, there are several interrelated structural, religious, cultural, professional, and economic forces at play that actively contribute to a culture of dying in America that is marked by denial. Those forces range from the financial incentives of pharmaceutical companies, hospitals, and physicians to the structure of Medicare coverage and even to the role that false hope can play in the patient-provider decision-making process. All of these factors work together to essentially sanitize death, leading to the overtreatment of the terminally ill.
Dealing with Doctors, Denial, and Death is in conversation with other contemporary books that address the comfort of death, like Knocking on Heaven’s Door by Katy Butler (2013) and Being Mortal by Indian American physician Atul Gawande (2014). Similar to Mangalik, both authors use their personal and professional experience to explain why the way the American medical system treats terminal illness is problematic. While Gawande and Butler offer the reader a look into how the medical-industrial complex shaped their fathers’ experiences with death, Mangalik offers the reader a more practical guide on how a person currently facing a terminal illness can take control of dying.
Written in clear and concise prose, the first three chapters are primarily devoted to explicating two central phenomena: overtreatment and false hope. Overtreatment refers to unnecessary tests, excessive medications, and procedures. Mangalik especially takes issue with overtreatment in cases where “the disease was too advanced for the patient to tolerate it, the patient had more than one problem affecting different organs, or there was no treatment available with a reasonable chance of controlling the disease(s)” (p. 157). The other phenomenon Mangalik addresses is the culture around false hope, which he claims can be found in medical education, the daily lives of Americans, and even the way doctors themselves think about and frame illness. By false hope, Mangalik means allowing a patient to believe they will get better when the doctor knows that is not the case. Combined, overtreatment and false hope can lead to overly aggressive treatment at the end of life and a chaotic death marked not by comfort or peace but by beeping machines. Keeping these phenomena in mind, Dr Mangalik spends the rest of the book identifying the structural factors that lead to overtreatment, the material consequences for patients and their families, and practical solutions for how providers and the terminally ill can avoid being overly invaded at the end of life, allowing them to leave this earth in a dignified way.
Chapters 4 and 5 offer a practical road map for people who are, as Mangalik says, “interested in taking charge of their lives and their deaths” (p. xiv). Chapter 4 addresses how the consumer revolution of the 1960s and 1970s pushed healthcare providers to become more responsive to patient-consumer voice, eventually leading to the passage of the Patient Self-Determination Act (PSDA) in the early 1990s. The PSDA was a series of laws requiring medical providers to give the patient disease details, the proposed treatment, and the expected results. Theoretically, the treatment information would enable the patient to either move forward or deny the treatment, but Mangalik suggests that in his clinical experience physicians do not always provide patients with the appropriate information. Mangalik offers a comprehensive list of questions that patients should ask their doctors before making a treatment decision. Mangalik suggests that patients “ask for the names, training, and field of work of all medical personnel involved in your care and treatment,” and he also recommends questioning the nature of the treatment itself by asking “how effective the treatment is,” “how often the treatment works,” “what are the chances of the treatment helping you in particular,” and “how long you will need to take the treatment” (p. 59). Once the patient has obtained answers to these questions, they might feel overwhelmed or confused, so in chapters 6 and 7, Mangalik helps break down and explain medical statistics, health literacy, and—I think most importantly—clinical drug trials, which he also addresses in detail in chapter 9. He writes, “By selective presentation, by misusing statistical methods, they can convince others of the validity of a statement they want to make,” whether that be on behalf of the pharmaceutical company trying to show that a new drug is better than an old one, the advertising industry relying on phrases like “25 percent better,” or a clinical trial demonstrating the efficacy of their drug (p. 73). Using the latter as an example, the author explains that patients need to discuss the recommendations with their health care provider in order to understand the benefits and risks, taking into consideration the difference between effect and benefit. A new drug may show that patients treated had a significant improvement in their heart function, but did the patient feel better? Did they live longer with a better quality of life?
While the first half of the book is geared mainly toward patients and families looking to make empowered decisions about living and dying, the second half addresses the structural flaws of the medical-industrial complex, using the end of life care and treatment as a lens. In chapters 8-10, Mangalik addresses why providers overtreat. First, Mangalik explains that “there are factors leading to over-treatment that are ingrained through their training and what they see as the normal or usual behavior of their peers: refusal to accept failure, focus on the disease, not the patient, use of treatments that have not been tested, suboptimal understanding of medical progress, guidelines that are employed without proper analysis, and belief in certain treatments” (pp. 84-85). Second, Mangalik purports that there are “pressures from society in general and from the medical system specifically which leads many providers to over-treat” such as competitiveness and ambition perhaps fostered in medical school, but undergirded by the competitive business models that hospital and medical centers function on, which emphasize efficiency (p. 103). Finally, Mangalik examines flaws in the way doctors interact with patients; he looks at how these micro-interactions shape profoundly the decision that the patient makes regarding their treatment or nontreatment. In particular, Mangalik explains “that some doctors are so apprehensive to stop treatment that they will try unproven, even ineffective treatments” (p. 143). Moreover, sometimes this “false hope on the part of the doctors matches up with your false hope as the patient. As a result, you may subject yourself to futile, ineffective treatments, and this delays implementation of comfort measures that would lead to a good death” (p. 145). Mangalik argues that doctors might overtreat patients due to a belief in the power of technology, a desire to go along with a patient’s wishes, the doctor’s own fear of death, and even a desire to be thorough and complete.
The final three chapters of Dealing with Doctors, Denial, and Death focus on medical futility. Most controversially, Mangalik examines methods for dealing with comfort before death for patients who have accepted that “active treatment of [their] disease is not in [their] best interest” (p. 210). He suggests that while the process for assessing this is certainly a continuum, there are three broad categories one can use: comfort care (i.e., hospice), hastening death by passive methods, and hastening death by active means. Mangalik believes that the key here is that “the patient has the option of ending her own life, painlessly and at a time of her choosing” (p. 220). The author mentions that “there are those who oppose this method of comfort at the end of life ... these groups base their opposition on religious and moral grounds” (p. 221). Disability activists, for example, have lobbied against assisted-suicide legislation, arguing that proponents of assisted suicide have essentially equated “disability with dying.” However, others such as Dr Lennard Davis have suggested that “disability studies in activism is all about empowerment and control. So when terminally ill people want to control their death, they are not doing anything radically different from what people with disabilities want to do. There is a commonality of purpose between people with disabilities and people who seek physician-assisted suicide. What disability activists seek the most is control over their own lives. Why would they want to deny that to someone who is terminally ill in Oregon?”
A difficulty of this book is that Mangalik is primarily writing from his own experience, which, while incredibly valuable and insightful, tends to lead to the author using his own clinical experience to make sweeping statements about all patients or health care providers. The greatest strength of the book lies in its ability to serve as a guide for terminally ill patients who might currently be facing a difficult decision about either their end-of-life care or that of a family member. This book breaks down complicated processes and language into a comprehensible guide to the types of questions one might ask to make the most appropriate decision for one’s own family. Dealing with Doctors, Denial, and Death would also be an excellent resource for medical students or providers who know they will be, or are, encountering situations where they have to guide patients through this challenging path of dying because, as Mangalik states on the last page, “Nobody gets out of here alive” (p. 227).
. “Assisted Suicide and the Rights of the Disabled,” Lennard Davis interviewed by Melissa Block, All Things Considered, National Public Radio, September 27, 2005.
(Courtesy: H-Disability, H-Net Reviews, June 2020 | This work is reproduced here under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License)