Leonard M. Fleck, PhD, and Karen Smith, LMSW, PhD, HEC-C, presented at the October 13 Bioethics for Breakfast session, offering their insight and expertise on the topic “Demystifying End-of-Life Care.” Bioethics for Breakfast is generously sponsored by Hall, Render, Killian, Heath & Lyman. The presentation portion of the session was recorded and is available to watch on our website.
The State of Michigan has recently approved the MI POST (Michigan Physician Order for Scope of Treatment), which allows a patient and physician to have in place directions (orders) on care to go between levels of treatment. Such orders typically specify the kind of care a terminally ill patient would want or refuse in an emergency situation outside a hospital setting. Such orders are agreed to by a competent patient or their representative and the attending physician. A POST document is often part of a larger advance care planning document.
Most patients do not have an advance directive or a POST. What happens when that patient is actively dying and the attending physician believes a Do Not Attempt Resuscitation order (DNAR) is in the best interest of that patient? Should that decision by the physician require the written consent of the patient’s family for that DNAR order? And what are the consequences for the patient if the family cannot reach agreement? If you were that patient, what would you regard as the most reasonable course of action? How would you ensure your wishes are followed?
Presenters Fleck and Smith gave some background on what it means to have a natural death and a managed death, noting that the majority of Americans today die a managed death. Smith explained that durable power of attorney and MI POST are the two state-authorized methods for directing end-of-life wishes. Fleck asked attendees to consider the following questions: Are the policies and practices in place regarding terminally ill incapacitated patients good enough? Are they the best we can do? What might we do better? What do we see as the main deficiencies in current policy and practice?
The presentation also explored how policy can protect patients and prevent suffering at the end of life and presented multiple case examples regarding terminal care in the ICU. Discussion during the Q&A portion focused on family disagreements in the ICU, the value of healthcare literacy and common misconceptions that stem from popular culture, and what happens when the court system is involved with end-of-life decisions.
Varkey B. Principles of Clinical Ethics and Their Application to Practice. Medical Principles and Practice. 2021;30:17-28. DOI: 10.1159/000509119. Free PubMed Central access.
About the speakers
Leonard M. Fleck, PhD, is a Professor in the Center for Bioethics and Social Justice and the Department of Philosophy at Michigan State University. Fleck’s interests focus on medical ethics, health care policy, priority-setting and rationing, and reproductive decision-making. He explores the role of community dialogue (rational democratic deliberation) in addressing controversial issues of ethics and public policy related to emerging genetic technologies. More recently, he has completed a book-length manuscript that addresses a number of ethical and policy issues related to precision medicine, primarily in a cancer treatment context. He also completed another book that addresses several contemporary issues related to bioethics and religion from a Rawlsian public reason perspective.
Karen Smith, LMSW, PhD, HEC-C, has been a member of hospital ethics committees for over 20 years. She is currently the Director of Ethics Integration for Henry Ford Health, a six-hospital system in metro Detroit. Smith publishes on issues related to clinical ethics the hospital setting. She specializes in death and dying issues and often works to educate the public on Advance Directive issues. She has been on the National Board for the Funeral Consumers Alliance which is a non-profit organization dedicated to providing the public education and advocacy related to after death needs.
Roi Livne, PhD, presented at the Bioethics for Breakfast event on October 4, 2018, offering perspective and insight on the topic “Values at the End of Life: The Logic of Palliative Care.” Leonard Fleck, PhD, moderated this session.
Over the past forty years, “the end of life” has become the center of extensive economic, policy, ethical, and medical discussions. Health economists measure and evaluate its cost; ethicists debate the morality of various approaches to “end-of-life care”; policymakers ponder alternative “end of life”-related policies; and clinicians apply a specialized approach (hospice and palliative care) to treat patients whom they diagnose as being at “the end of life.” How are those many-faceted conversations emblematic of this particular moment in history? How are the limits of what can be done, both medically and financially, to prolong life communicated to severely ill patients and families? Dr. Livne’s analysis drew from a combination of historical and ethnographic work conducted with palliative care clinicians in three California hospitals.
Roi Livne Roi Livne is an Assistant Professor in the Department of Sociology at the University of Michigan. He received his PhD in sociology from the University of California, Berkeley in 2016. An economic sociologist at heart, he studies everyday economic life and its somewhat awkward intersections with morality. His book, Values at the End of Life: The Logic of Palliative Care is forthcoming this February in Harvard University Press. The book develops a historical and ethnographic account of the deeply personal relationships between financial considerations, emotional attachments, and moral arguments that motivate end-of-life decisions in American hospitals. Livne’s other research is on the techno-politics of sovereign debt management. He has published in the American Sociological Review and Socio-Economic Review.
About Bioethics for Breakfast:
In 2010, Hall, Render, Killian, Heath & Lyman invited the Center for Ethics to partner on a bioethics seminar series. The Center for Ethics and Hall Render invite guests from the health professions, religious and community organizations, political circles, and the academy to engage in lively discussions of topics spanning the worlds of bioethics, health law, business, and policy. For each event, the Center selects from a wide range of controversial issues and provides two presenters either from our own faculty or invited guests, who offer distinctive, and sometimes clashing, perspectives. Those brief presentations are followed by a moderated open discussion.
Center Assistant Professor Dr. Devan Stahl is co-author of an article published in the February 2018 issue of the Journal of Pain and Symptom Management. “Addressing a Patient’s Hope for a Miracle” was written by Myrick C. Shinall Jr. (Vanderbilt University Medical Center Section of Palliative Care), Dr. Stahl, and Trevor M. Bibler (Baylor College of Medicine).
Abstract: Ill patients may make decisions to continue aggressive life-prolonging care based on hope for a miraculous recovery, and clinicians can find goals of care discussions with these patients extremely challenging. Thus, palliative care providers may be asked to help in these discussions. The concept of “miracle” can express a multitude of hopes, fears, and religious commitments. Effective, sensitive engagement requires the palliative care provider to attend to these variegated hopes, fears, and commitments. This case presents a typology of ways patients express hope for a miracle along with analysis of the motivations and beliefs underlying such hopes and suggestions for tailored responses by palliative care providers.
The full text is available online through Elsevier/Journal of Pain and Symptom Management (MSU Library or other institutional access may be required to view this article).
A recently reported study claims to more accurately predict how much longer patients will live. Researchers at Stanford University assigned a neural network computer the task of training itself to develop an artificial intelligence model that would predict if a patient would die within 3-12 months of any given date. The computer trained on the EMR records of 177,011 Stanford patients, 12,587 of whom had a recorded date of death. The model was validated and tested on another 44,273 patient records. You can find the wonky details here.
The model can predict with 90% accuracy whether a patient will die within the window.
Now this is a lot better than individual physicians typically do. It’s not just that such predictions are fraught with uncertainty, given how many complex, interacting factors are at work that only a computer can handle. If uncertainty were the only factor, one would expect physicians’ prognostic errors to be randomly distributed. But they are not. Clinicians overwhelmingly err on the optimistic side, so the pessimists among them turn out to be right more often.
The study takes accurately predicting death to be a straightforwardly useful thing. It gives patients, families and clinicians more reliable, trustworthy information that is of momentous significance, better informing critical questions. Will I be around for my birthday? Is it time to get palliative or hospice care involved?
But making real progress toward these goals will take a lot more than this model can deliver.
The first question is how it could inform decisions about what to do next. The limitation here is that the model uses events from my medical history occurring prior to the time it’s asked to predict my survival. Perhaps the decision I’m facing is whether to go for another round of chemotherapy for metastatic cancer; or whether instead to enter a Phase 3 clinical trial for a new therapeutic agent. The question (one might think) is what each option will add to my life expectancy.
Now if the training database had some number of patients who took that particular chemotherapy option, then that factor would have somehow been accounted for when the computer built the model. Assuming the model reliably predicted the mortality of those earlier patients, all we’d need to do is add that factor to my medical record as a hypothetical, run the model again, and see whether the prognosis changed.
But is there something about the chemotherapy being offered that is different than the regimens on which the computer trained? Then the model will not be able to assess the significance of that difference for the patient’s survival. Obviously, this limitation will be even more radical for the experimental treatment option. So in the individual case, the model’s helpfulness in making prospective treatment decisions could be quite limited. It would have to be supplemented, or even supplanted, by old-fashioned clinical judgment, or alternative algorithmic prognostic tools.
This may be one reason the study authors imagine a different use: identify patients with 3-12 months life expectancy and refer them for a palliative care consultation. The idea is to push against the tendency already noted for physicians to wait too long in making palliative care or hospice referrals. Assuming the model is running all the time in the background, it could trigger an alert to the attending physician, or even an automatic palliative care referral for all those the model flagged.
Now, in my ethics consultation experience, getting an appropriate palliative care or hospice referral only one month preceding death would be a stunning accomplishment, let alone three months prior. But the key word here is “appropriate,” since the need for palliative care is not dictated by life-expectancy alone, but more importantly, by symptoms. Not every patient with a projected life expectancy between 3 and 12 months will be suffering from symptoms requiring palliative care expertise to manage. Automatic referrals requiring palliative care evaluations could overwhelm thinly-staffed palliative care services, drawing time and resources away from patients in greater need.
Part of the problem here is the imprecision of the model, and the effects this may have on patient and provider acceptance of the results. A 90% chance of death within 3-12 months sounds ominous, but it leaves plenty of wiggle-room for unrealistic optimism: lots of patients will be confident that they are going to fall at the further end of that range, or that they will be among the 10% of cases the model got wrong altogether. And it’s not just patients who will be so affected. Their treating physicians will also be reluctant to conclude that there is nothing left to do, and that everything they did to the patient before has been in vain. Patients aren’t the only ones prone to denial.
And the nature of the AI-driven prognosis will make it more difficult to respond to patient skepticism with an explanation anyone can understand. As the authors point out, all we really know is that the model can predict within some range of probability. We don’t know why or how it’s done so. The best we can do is remove a feature of interest from the data (e.g., time since diagnosis), rerun the model, and see what effect it has on the probability for the patient’s prognosis. But the model offers no reasons to explain why there was a change, or why it was of any particular magnitude. The workings of Artificial Intelligence, in other words, are not always intelligible. Acceptable explanations will still be left to the clinician and their patient.
Tom Tomlinson, PhD, is Director and Professor in the Center for Ethics and Humanities in the Life Sciences, College of Human Medicine, and Professor in the Department of Philosophy at Michigan State University.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, March 8, 2018. With your participation, we hope to create discussions rich with insights from diverse perspectives.
You must provide your name and email address to leave a comment. Your email address will not be made public.
Center Assistant Professor Dr. Marleen Eijkholt recently traveled to Marquette, MI to present at the Upper Great Lakes Palliative Care & Hospice Conference, hosted by Lake Superior Life Care & Hospice.
The conference brought together a wide variety of providers, including home health and hospice providers. Dr Eijkholt’s presentations touched on two controversial areas, through a mix of practical case samples and some theory. Her first talk, “Ethical dilemmas in advance care planning–Mom isn’t herself,” sought to engage participants with the different advance care planning options in Michigan and throughout the U.S. The presentation explored the challenges that come with advance care planning instruments and their application. In Dr. Eijkholt’s second presentation, “Mom wants to die–Professional and personal ethical dilemmas at the end of life,” the participants discussed different end-of-life scenarios, patient perspectives, and wishes. The presentation and discussion also explored distinctions and strategies for dealing with patient requests at the end of life.
Imagine your loved one is dying. You have heard about an intervention out there, somewhere, that could help—you think. Not trying this intervention for and on your loved one would seem insane, as who knows, there could be a chance for a cure. Without trying it, your loved one’s death is certain. But by trying it—who knows—this intervention might be the miracle for your beloved. Why not try?
Though death ultimately takes all, most of us resist a final exit for both our loved ones and ourselves. Pursuits to forestall death can take the shape of family’s quests for experimental treatments, like in the Charlie Gard case, or they can come by insisting on a “full code” for a terminally ill loved one who is on their deathbed. This rescue impulse (by unbridled hope) encourages health care professionals as well to marshal all available resources in attempts to circumvent the inevitable.
Where “right to try” creates false hope, I submit, however, that that the health care profession (HCP) has an obligation to avoid collaborating in, participating, propagating or augmenting false hope. By not speaking up against such requests, health care providers precipitate a harm, i.e., the false hope harm (FHH). As such, the HCP should show courage, and show spine to resist more broadly unreasonable “rights” to try.
I call for an active stance from the HCP against populist legislative initiatives, such as the latest U.S. Senate’s “right to try” bill. In the same way, I call for an active stance against unrealistic patient and family requests for rights to try, including resuscitative efforts in terminally ill patients or other demands for non-beneficial treatments. My position thus supports the providers’ prudent approach in the tragic Charlie Gard case, as described at the end of this post. The FHH can best be countered by courageous advocacy from the profession.
Earlier last month, the U.S. Senate passed a “right to try” bill, and if the House approves this legislation, the bill would allow terminally ill individuals to access experimental drugs not yet available on the regular market. Once a drug has passed Phase I drug testing, an individual could petition the pharmaceutical company for access to that experimental drug. This bill also provides protection for pharmaceutical firms. The legislation restricts the FDA from using right-to-try-related adverse outcomes in determining a drug’s safety. Accordingly, the bill limits “penalizing” pharmaceutical companies for their “generosity” in offering access.
A discouraging stance against “right to try” legislation is tricky. It is telling that “right to try” legislation has been dubbed “feel good” legislation, and thirty-nine states already have such legislation, including Michigan. Although there are proponents of these laws, I contend that these laws are “rhetorical pleasers” more harmful than beneficial. Criticism directed at “right to try” legislation focuses on several concerns, including its potential to undermine the clinical trial system and the belief that ultimately such laws only serve the elite. Some critics address false harm arguments, although these concerns are mostly different from mine. Critics argue that the legislation creates false hope, because pharmaceutical companies are less than eager to share their innovative pharmaceuticals, and are afraid of right-to-try-associated risks and harms that might lead to scientific and drug development setbacks. Patients, therefore, most often are unable to obtain access to the medications, so their hope for a “miracle drug” is in fact unfulfilled. Without actionable pathways, patient access cannot be guaranteed. (Indeed, in Michigan, Bridge Magazine suggests that the legislation has failed to change the status quo, and no one has sought access.)
My proposal that the HCP should stand up against unreasonable rights to try comes from my belief that these laws create FHH instead of real benefit. “Right to try” legislation generates false hope as the sought after experimental interventions are unlikely to benefit the patient. Although the legislation requires the drug to have passed Phase I clinical trial safety testing, this measure does not amount to a guarantee that the medication offers benefit. A Phase I clinical trial is safety focused, conducted in a very controlled environment, and in fact many treatments fail to demonstrate benefit outside that controlled environment.
The federal legislation is therefore an even more troublesome example of “feel good” legislation, as it propagates and augments FHH. It endorses the idea that pursing experimental treatment is both feasible and reasonable. Equally, it supports the notion that as long as one has the means, one should have access to try. Most importantly, by limiting FDA oversight, it undermines safeguards and trust in the system, and creates more room for FHH, giving pharmaceutical companies nearly a free reign.
Standing up to false hope is painfully hard, especially in the face of persuasive, emotionally vivid stories. Who would want to deny anyone hope for a miracle? Charlie Gard’s parents wanted to try a new treatment for their son, but their providers refused access. While their son was tragically dying, they were helpless to avert the inevitable. They heard about a treatment in the U.S. and appealed for access. But the UK doctors refused to endorse their appeal and the Court eventually prevented Charlie Gard’s parents from taking their son to the U.S. for treatment. A compassionate intuition could be: provided Charlie did not feel pain, why would there be anything wrong with them pursing this treatment in the U.S.? His parents had sufficient funds to cover related costs, so their pursuit would not further tax the social system. Experts suggested that there was a zero percent chance of health benefits for Charlie, but who can really know zero percent if you haven’t tried? We can never exclude miracles, can we? Even though this drug was not past Phase I, it had shown marginal benefit in other kids with illness that were related to Charlie’s, so safety wasn’t hard to prove.
I propose that if providers would have allowed Charlie to leave for the U.S., their endorsement would have exploited vulnerable individuals; they would have collaborated in FHH. The providers took the right and courageous action. Not speaking out against FHH passively supports initiatives that are more harmful than beneficial, and speaking out requires an active positioning of individual providers—optimally supported by the larger body of HCPs. I submit that this should extend to participating in requests for non-beneficial treatment requests like resuscitative efforts on dying patients. The medical profession rests on elements of trust, guidance, expertise and collaboration. Absent health care providers’ courage to deny treatment, we are doomed to see a further erosion of that profession. Without provider action against “right to try,” under legislation or requests in the clinic, medicine is at risk of further drifting into consumerist medicine, where money, fear, and privilege turn health care (and providers) into hostages of patient demands.
Marleen Eijkholtis an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Obstetrics, Gynecology and Reproductive Biology in the Michigan State University College of Human Medicine. Dr. Eijkholt is also a Clinical Ethics Consultant at Spectrum Health System.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, October 5, 2017. With your participation, we hope to create discussions rich with insights from diverse perspectives.
You must provide your name and email address to leave a comment. Your email address will not be made public.
Questions about end-of-life care are always vexing, but a recent article in U.S. News and World Report suggests that cancer patients continue to receive useless but harmful treatments at the end of life (Thompson, 2016). A new research study presented at the American Society of Clinical Oncology’s (ASCO’s) annual meeting revealed that a big part of the problem comes from a lack of meaningful dialogue among physicians, patients, and family members. Indeed, in many cases, serious discussions never take place. Dr. Ronald Chen, a radiation oncologist at the University of North Carolina’s Lineberger Comprehensive Cancer Center, and his colleagues examined de-identified claims data from patients younger than 65 with advanced cancer who died between 2007 and 2014 and were enrolled in Blue Cross Blue Shield insurance plans. They found that nearly three-quarters of patients with a variety of advanced cancers received aggressive care within the last 30 days of life—a proportion that remains virtually unchanged even after the ASCO issued warnings to physicians about the harm of such treatments in 2012 (Begley, 2016). Unfortunately, these treatments are not only unlikely to help but can be quite harmful. Andrew Epstein, an ASCO palliative care expert, explains, “Much more often than not, these types of care at the end of life are not helpful, and they are emotionally and physically harmful for patients, and emotionally harmful to the patients’ loved ones” (Thompson, 2016).
The ASCO’s “Choosing Wisely” guidelines encourage physicians not to perform invasive procedures or try last-ditch chemotherapy and radiation regimens when patients are already significantly debilitated and unlikely to benefit. But, although the ASCO has encouraged end-of-life discussions, experts on end-of-life care worry about evidence that most terminally ill patients don’t even know they are in their final days. A separate study recently published in the Journal of Clinical Oncology found that only 7% of patients who had scans, knew their cancer was quickly progressing, and discussed their prognosis with a physician acknowledged that they likely had mere months to live. Physicians frequently used overly optimistic language, and patients did not press their physicians for more information or explanation. As Holly Prigerson, an expert on end-of-life care at Weill Cornell Medicine, suggested, oncologists are generally “very reluctant to put a number on how long patients to have live” (Epstein et al., 2016). This reluctance likely stems from a fear of being characterized as overly pessimistic or as giving up on patients too quickly. Thus, we are left with the question of what to do with the results of these two studies. Why are physicians and patients so reluctant to discuss end-of-life choices and care options?
I believe there are two primary issues at play here. First, there appears to be unwillingness on the part of physicians to broach difficult subjects. It is especially problematic that despite general professional agreement about the need for less aggressive end-of-life care physicians routinely fail to have frank discussions with patients and steer them toward appropriate palliative options. I surmise that part of what is going on here has to do with the difficulty of changing perspectives. Few physicians would voice disapproval for palliative care in theory, but it is difficult to give up the fight and focus only on palliation. The medical community wants to “beat” cancer, not admit defeat. The culture of cancer has been shaped by a warrior myth whereby giving up on a cure is unacceptable. The only acceptable response is to fight the cancer to the very end, even if that fight requires significant sacrifices. No doubt, cancer culture is fueled by the general public’s expectations as well (Page, 2015); but, since physicians ultimately control access to aggressive care, they must take a large share of responsibility for the warrior ethos. Physicians would have great social power if they presented a united front in favor of palliative care.
But, it is not enough for physicians to endorse and openly encourage palliative care. Secondly, we must consider what rights and responsibilities patients have when faced with critical illness. Too much of the discussion about end-of-life care to date has focused exclusively on the rights of patients to seek last-ditch treatment options. There is less discussion about patients’ right to receive comprehensive hospice and palliative care, and there is absolutely no discussion about the responsibilities patients have when they exercise their rights. It seems obvious that patients have a right to understand their prognosis and make informed decisions, but what of their responsibilities? Patients have a concomitant responsibility to be informed consumers when they seek care in accordance with their individual capacities. Part of becoming an informed consumer is recognizing that there will come a time in life when modern medicine no longer has an answer. That time may be sooner or later than a patient anticipates, but it will assuredly come. Preparation for these decisions is a patient’s responsibility. I would argue that current social pressures on patients to be so-called warriors who give up everything for a cure—no matter how unlikely or far-fetched said cure is—both limit individual choice (Page, 2015) and simultaneously allow patients not to discharge their responsibilities as informed consumers.
Remedying current end-of-life care challenges requires changes in attitude and behavior on the part of physicians and patients. Physicians have a professional responsibility to educate themselves and to offer patients reasonable treatment options—options that will most likely be palliative rather than curative. But, patients also have a role. They have a responsibility to think about end-of-life decisions. As human beings, we know our time is inevitably finite. We have a responsibility to prepare for end-of-life choices in the same way that we make plans for dependents, write wills, and purchase life insurance. Now, we just have to find ways to change behavior. So, to start the discussion, I am asking, “How can we collectively speak out against the current cancer warrior culture and help physicians and patients appreciate their rights and responsibilities?” Hannah Giunta is an eighth year DO-PhD student at Michigan State University. She received her MPH in May 2015 and her philosophy PhD in May 2016. She is currently completing her medical school clerkships.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, July 7, 2016. With your participation, we hope to create discussions rich with insights from diverse perspectives.
You must provide your name and email address to leave a comment. Your email address will not be made public.
This post is a part of our Bioethics in the News series. For more information, click here.
By Leonard Fleck, PhD
In an essay in the New York Times (12/9/15) titled “Imagine a Medicare ‘Part Q’ for Quality at the End of Life,” Katy Butler tells the story of her father who suffered a devastating stroke at the age of 79. That was followed by additional strokes and vascular dementia that culminated in his death six and a half years later. She writes: “Ours is a story familiar to many families: shuttling my aged father to specialist after specialist, each focused on a single crumbling organ—his brain, his heart, his bladder, his colon, his eyes.” She goes on to write: “My father, and others like him, suffered because, at the tail end of life, Medicare continues to pay well for fix-it treatments focused unrealistically on cure and underpays for care and desperately needed home support.” Butler’s goal in writing this commentary is to advocate for a reversal of Medicare’s priorities: more emphasis on funding quality home care, quality primary care, and quality palliative care at the end of life rather than hospital-based or emergency room expensive, marginally effective life-prolonging but quality-of-life-diminishing curative efforts.
A similar story is told in another New York Times essay by Nina Bernstein (2014). She tells us about Mr. Joseph Andrey, 91 years old, beset with multiple chronic degenerative conditions, whose one wish was that he be allowed to die at home. The problem, however, was that multiple home care agencies refused to take him on as a home care patient because he was too complex a patient requiring too much care relative to the reimbursement they would receive from Medicare. Consequently, in the last two years of his life he endured multiple hospitalizations and nursing home placements that left him with a hospital-acquired sepsis and nursing home-acquired pressure sores. His daughter, who fought heroically to honor her father’s wishes, calculated that Medicare paid over a million dollars for “care” in the last two years of his life.
The story of Mr. Andrey is both sad and tragic. From a policy perspective we might think of him as an outlier, one of those rare anomalous cases that policies cannot accommodate. However, that would be a mistake. More than half of Medicare patients over age 85 have four or more incurable conditions, including what are described as “slowly fatal” conditions such as heart failure, emphysema, kidney failure, various advanced incurable cancers, and dementia. In 2014 roughly 6 million Medicare patients were over age 85. It strains the bounds of linguistic and ethical propriety to think of 3 million of these individuals as “outliers.”
I remind the reader that the major problem of health policy today is cost containment. Medicare is an inescapable focal point for that concern. In 2014 Medicare expenditures were about $640 billion. Over the ten-year period 2015-2024 projected Medicare expenditures are estimated to be $8.3 trillion. It is not as if all Medicare patients have extraordinary health needs. Rather, 5% of all Medicare patients account for 38% of total Medicare expenditures, roughly $256 billion in 2014 (National Institute for Health Care Management, 2012). If all those dollars were needed to address serious health needs, effectively restoring high quality life-years, a just society would have a presumptive ethical obligation to address those needs. But the stories of Mr. Andrey and Katy Butler’s father suggest that this is not often the case. Dr. Joanne Lynn, a veteran hospice physician, asks (no doubt in a frustrated tone of voice): “How can I get a $100,000 drug [for a terminal cancer patient] but I can’t get supper [for that same patient]?” She said that in the context of a federal budget sequestration that slashed spending on meals for seniors (Bernstein, 2014).
To return to Katy Butler, she is advocating for what she calls Medicare “Part Q” (for quality of life). Part Q would pay for a coordinated primary care team that would provide care in a patient’s home, what might be described as intense palliative and supportive care until that patient died. Such care would be provided for as long as two years prior to the death of a patient, most often with multiple slowly fatal medical conditions. To qualify for Medicare Part Q Butler says, “I would promise, upfront, to forgo medical treatments that evidence shows are outrageously expensive, not cost-effective, painful to endure, and likely to extend my life, if at all, by only months.” Medicare Part Q would be an option that patients would have to freely embrace. In spite of that qualification, it is easy to imagine death panel rhetoric being readily resurrected with the intent of scotching that option.
What we should note, however, is that under the Affordable Care Act the Obama Administration put in place three years ago a demonstration project under Medicare titled “Independent at Home.” About 8400 frail seniors with multiple chronic conditions are receiving customized home-based primary care, similar to what Katy Butler had in mind, except there is no requirement to forgo expensive and aggressive end of life care. Still, the goal of the program is to minimize use of emergency room and hospital services, thereby saving Medicare dollars. After one year the program has saved about $3100 per beneficiary.
I want to conclude with a provocative endorsement of Katy Butler’s Medicare Part Q. But I find it difficult to imagine what would motivate a substantial majority of Americans, likely within two years of dying, to forgo aggressive costly life-prolonging care (otherwise paid for by Medicare). Ms. Butler believes patients would vividly imagine the pain and suffering they could avoid for the sake of a dignified and peaceful death. But the sad reality is that most patients can imagine that pain and suffering but see it as something that can be endured for the sake of an indefinite gain in life expectancy, which is why so many cancer patients spend only the last week or two of their lives in hospice.
To correct for that distorted judgment I would offer a provocative addendum to Part Q, namely, that patients would receive 25% of whatever they saved the Medicare program. If they gave up a $100,000 cancer drug for their metastatic cancer, they would receive $25,000. Presumably another $25,000 or more of that savings would pay for intensive in-home palliative care and supportive social care. Physicians would have to be entrusted with responsibility for protecting the best medical interests of those patients, i.e., dissuading patients from inappropriately foregoing a necessary hospitalization that was congruent with a dignified dying process. Still, my critics might see this proposal as fundamentally ethically flawed, manipulating patients with a monetary offering so that they would give up some portion of their remaining life. But if medical research shows in some range of definable terminal circumstances that higher costs are associated with a worse quality of death, then that is ethically significant. Some research shows just that (See Zhang et al., 2009; De Jonge et al., 2014; Boling and Leff, 2014; Meier, 2015). If such economic incentives serve to nudge patients to make choices that are more congruent with their objective best interests near the end of life, and if those savings can be reallocated to higher priority (more just and more cost-effective) health care needs of the elderly, then this proposal deserves thoughtful consideration rather than rhetorical savaging.
For my physician readers I will conclude with this question: Would you be comfortable counseling patients likely in the last year of life regarding this option, i.e., being a bit more directive?
Leonard Fleck, PhD, is a Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Philosophy at Michigan State University. Dr. Fleck is the author of Just Caring: Health Care Rationing and Democratic Deliberation (Oxford University Press; 2009).
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, March 10, 2016. With your participation, we hope to create discussions rich with insights from diverse perspectives.
You must provide your name and email address to leave a comment. Your email address will not be made public.