Can People Become Burdens?
Notes from a Family Meeting, Vol. 2, No. 1
The “right to die” seems a strange child of the bloodiest century in history.
One would have thought that the wars, along with the promises of advancing medical science, would have fueled an even stronger desire to keep living. The boons afforded to human health have indeed been amazing, but there has been a cost: the possibility of suspending life in a state that many consider a precursor to death without the release of actually dying. Medical technology has been good enough to resist death for a time, but will eventually fail in restoring people to the lives they once knew. Such medical interventions exacerbate the harms already inflicted by the illness itself.
It’s been a meandering journey to discern the ethical and legal basis for not intervening. Various courts, including the Supreme Court of the United States, have affirmed the right to decline medical interventions even at the risk of death. This became known as the “right to die,” though the judicial opinions usually located the right amidst within those of privacy and informed consent. Some people may prefer the risk of death to the burden of medical interventions and, ultimately, the individual right to privacy and the refusal of consent trumps the state’s interest in protecting life.
I’m not sure anyone could have predicted that the innovation of something like the ventilator, for example, would result in the limbo of chronic critical illness. To riff off Neil Postman, after the ventilator, we didn’t have medicine + mechanical ventilation. We had a different world of medicine. Each new major medical intervention doesn’t just inhabit the landscape of medicine but changes it entirely. So, too, can legal and ethical developments alter the world in ways we can’t anticipate. For example, consider that most people wake up each day living by default. They don’t ruminate on their so-called “right to die” and choose, instead, to live. Their living isn’t consciously chosen; it’s the container for everything else they’re doing.
Life itself is fragile, but so too is the opportunity to live by default. It can be taken away with just a simple offer: do you want to keep living like this?
Dinner Parties and Death
David Velleman framed the dilemma in an analogy:
Offering someone an alternative to the status quo makes two outcomes possible for him, but neither of them is the outcome that was possible before. He can now choose the status quo or choose the alternative, but he can no longer have the status quo without choosing it. And having the status quo by default may have been what was best for him, even though choosing the status quo is now worst. If I invite you to a dinner party, I leave you the possibilities of choosing to come or choosing to stay away; but I deprive you of something that you otherwise would have had - namely, the possibility of being absent from my table by default, as you are on all other evenings. Surely, preferring to accept an invitation is consistent with wishing you had never received it. These attitudes are consistent because refusing to attend a party is a different outcome from not attending without having to refuse; and even if the former of these outcomes is worse than attending, the latter may still have been better. Having choices can thus deprive one of desirable outcomes whose desirability depends on their being unchosen.
Although he provocatively titled his paper, “Against the Right to Die,” his argument had euthanasia in view (and, one could extrapolate, physician-assisted suicide [PAS]).1 The argument is broadly applicable across medicine: to offer a patient a choice removes from them the possibility of continuing in the status quo by default. This is usually a good thing because the status quo for someone with serious illness is detrimental to life, function, and comfort. To interrupt that status quo with our offers of medical intervention is an attempt to help!
But sometimes the default acceptance of the status quo is better than facing a choice. That’s the case in deciding to live or die. In facing that particular decision, patients find themselves in the unenviable position of having to justify their own existence. Velleman again:
Once a person is given the choice between life and death, he will rightly be perceived as the agent of his own survival. Whereas his existence is ordinarily viewed as a given for him - as a fixed condition with which he must cope - formally offering him the option of euthanasia will cause his existence thereafter to be viewed as his doing.
The problem with this perception is that if others regard you as choosing a state of affairs, they will hold you responsible for it; and if they hold you responsible for a state of affairs, they can ask you to justify it. Hence if people ever come to regard you as existing by choice, they may expect you to justify your continued existence. If your daily arrival in the office is interpreted as meaning that you have once again declined to kill yourself, you may feel obliged to arrive with an answer to the question 'Why not?'.
You can extrapolate Velleman’s argument to include the offer of life-sustaining therapies. That is, giving patients a choice about whether to accept or decline a life-sustaining therapy, recognizing that death is a possibility if one avoids the therapy, can induce this kind of twist in decision-making as well. Will life be “worth living” in the new state of affairs? Is it “worth living” now?
Perhaps disquieted by Velleman’s observations, let’s step aside and consider a commonly uttered phrase in modern medicine: “I don’t want to be a burden.” These patients want to protect their loved ones from the harm (emotional, financial, physical) that they worry their own frailty, disability, and dependence may cause. They may also be disturbed by the idea of their own dependence. If they can’t regain independence, then what else is left for them?
It’s not just that one might be expected to justify their own existence to others, but that, when faced with the choice of living or dying, one must first justify their own existence to themselves. Talk of becoming a burden reflects that they’re thinking through this justification. There’s no more living by default. Someone who believes they’re a burden in the midst of serious illness will soon confront the question: “Should I keep living?” How do patients answer this question?
One way is to rely on the utilitarian calculus supplied by the language of burdensomeness. Only those who function independently are those who avoid being burdens. Our society values ability and independence, which aren’t usually hallmarks of serious illness. Because of those values, our society often neglects, forgets, and actively stigmatizes people who are frail, vulnerable, or disabled. This “perceived burdensomeness” is a risk factor for suicide. It’s also among the major reasons people opt for PAS.
To summarize then: engaging patients in a conversation to let them know that they need not accept a life-sustaining medical intervention, or that euthanasia or PAS are options for them, presents them with the option of living or dying. This removes from them the possibility of living by default, and thus imposes on them the need to justify, if only to themselves, why they should keep living. As they work through that evaluation they may rely on the heuristics given to them by our culture, namely ableism, utilitarianism, and (avoidance of) perceived burdensomeness. The last of these is itself associated with suicide, both in non-assisted and assisted varieties.
Rather than empowering patients, this chain of reasoning burdens them with the need to evaluate their ongoing existence. Is this a life worth living? The terms of worth are supplied to them by our utilitarian culture. Others go a step further in arguing for a “duty to die.” Perceived burdensomeness and the duty to die go hand-in-hand in a culture that is biased against disability.
Helping People Live
This puts us in a bit of a pickle. Am I suggesting we bypass informed consent and not offer patients any choices about those things that may result in their death? No, I’m not. Informed consent is critical. Patients must know when accepting or declining a medical intervention may result in their death. Weighing that concern is inevitable.
I see no other possibility: patients with serious illness will face the decision, and wrestle with it to a greater or lesser degree, of whether to live or die based on their acceptance or avoidance of certain medical interventions. They will make decisions in which they might not intend to die, but recognize the possibility, and death will factor into their deliberations. In light of that, I suggest two things.
First, let’s reframe this talk of burdens.
We know that patients themselves who have serious or chronic illness are burdened by their illness, symptoms, suffering, and all manner of other things. Sometimes that burden results from the illness itself and sometimes it’s from society’s response to the illness. Because of this, they struggle to go about their lives. Enter the wonderful work of palliative care: it provides the opportunity to come alongside someone and help ease their burdens so they can live their life in a way that is meaningful to them.
Can we recognize, and help others to recognize, that people themselves do not become burdens just because they’re sick? They can, though, share the burdens with those closest to them. Sometimes those shared burdens burn out caregivers. That still doesn’t mean the person has become the burden. It means that the burden of their illness has become too great even for multiple people to bear. Because we recognize their inherent dignity, we as a society stand ready to help bear their burdens with them in all the ways modern healthcare aspires to do. This shift allows the journey through serious illness to be one that is shared rather than isolating a vulnerable patient as a burden that, if found wanting on the balance, should be eliminated.
If a patient mentions that they “don’t want to be a burden,” maybe don’t just nod along. Inquire gently what they mean and what their specific concerns are. Often the caregiver will fall over themselves to exclaim the patient isn’t a burden, but don’t let that drown out the patient’s perspective. Try to understand what their hopes for the future are even as their illness advances, and how they might imagine their growing dependence.
If the opportunity affords itself, you’ve validated the patient’s worries, and you have a fair appreciation for their perspective, consider offering a reframing, something like: “Is it ok if I share a thought with you about what you just said? I care for a lot of patients who are sick. They struggle mightily under the burdens of symptoms, medical bills, hospitalizations … [and so on, whatever might be relevant]. But just because they’re bearing those burdens doesn’t mean they themselves become a burden. You’re not a burden. And you do have a choice to share your burden, even a bit of it, with those who want to help. It’s so hard to walk this road alone, and part of the journey is helping others bear part of the load for a while. This isn’t your fault. This is part of having these issues, and you are not a burden.” Reframing without invalidating or condescending requires a gentle, patient demeanor; I miss the mark if I’m feeling harried.
Second, let’s avoid the use of death as a medical intervention.
Given the course of decision-making and cultural influence I’ve traced thus far, death is an unwieldy instrument for relieving what is often a social phenomenon.2 The choices we offer patients confront them with decisions that may result in their death. The culture in which we live foists on them heuristics that are harmful and lead people to weigh their own lives using utilitarian, ability-based metrics that may induce them to consider suicide. Thus, PAS would naturally bias itself toward that population. This is something that escapes formal safeguards because it doesn’t involve the strong-arming of patients by their families or clinicians nor will it necessarily manifest as overt mental illness. It’s baked into the mores and hidden curriculum of our culture. It also impacts many more decisions than those involving suicide, including decisions about withholding or withdrawing life-sustaining therapies.
Is that the culture we want to build: one in which we use ability and independence as the major metrics of determining whether life has the value to continue living; a culture in which people become burdens because they’re frail and dependent before we ourselves become frail and dependent? Is that the foundation on which we want to build our institutions of healthcare? Is this how we want to raise our families? Is this how we want to be treated by our friends?
What if we worked hard, instead, to build a society that cares well for all people? In so doing, we might remind them and ourselves of the truth of what Stanley Hauerwas observed: “Medicine is but a gesture, but an extremely significant gesture of society, that while we all suffer from a condition that cannot be cured, nonetheless neither will we be abandoned.” In shouldering one another’s burdens, we show that no person can themselves become a burden. This is the mutual dependence that marks our humanity. This is the basis for any right to healthcare. It isn’t and won’t be easy. These decisions where one’s life hangs in the balance remain difficult. Serious illness and dying are terrible. Suffering is real. But at least we wouldn’t compound the challenges inherent in caring for people with serious illness by contributing to their perceived burdensomeness.
Becoming Burden-Bearers
Often arguments against PAS are caricatured as arguing against liberty. As Velleman has shown, and I’ve extrapolated, the mere offer of more choices may be harmful and may paradoxically constrain liberty. We need to be mindful of the environment in which those choices are presented and made. So, instead of framing these discussions in terms of which hypothetical (or actual) life would be “worth living,” I attempt to engage my patients and their families in conversations about the goals they want to prioritize (e.g., longevity, function, comfort) and how medical interventions will help or hinder them. It’s a subtle shift that, along with the aforementioned approach to perceived burdensomeness, helps to honor the dignity and agency of patients while at the same time setting aside death as an instrument.
We could resist the ever-present cultural impulse to esteem ability and independence to the devaluation of the actual human condition of frailty, dependence, and mortality. We could recognize that attempting to use death as a medical intervention will inevitably harm not only some individuals but our entire society. We could honor patients no matter how they’re living and seek to help them live well for however long they may have left.
We can help people to share their burdens and, in so doing, declare that no one is a burden.
Trajectories
Following a meandering reading-path, sharing some brief commentary along the way.
“War and peace in cancer - the words we choose”
I’ve never liked the use of war metaphor in medicine. Maybe it’s because I’ve spent so much time caring for those with chronic and serious mental and physical illnesses where you never really “win.” Invoking the hypervigilance that we muster in war-time is exhausting beyond the illness itself and narrows our imagination about what else might be possible: viewing health and illness as a journey, a story, a spiritual challenge, and so on. I’m not sure the use of war metaphor has been helpful when COVID has been in view either. It’s exacerbated the political hyperpolarization we’ve seen around public health measures and made it difficult to compromise where scientific evidence is pending or limited.
“Cognitive biases and heuristics in medical decision-making”
I came across this review while reading Jennifer Blumenthal-Barby’s book Good Ethics and Bad Choices. It’s a helpful collection of many of the most common biases that we see in clinical medicine, and groups them according to the context in which they’re most likely to appear. Here’s another list of cognitive biases. What do you do with all this information? Read Dr. Blumenthal-Barby’s book to dwell on her well-reasoned argument and recommendations!
Prognostication is tricky. That’s why this paper (and others like it, looking at patient-reported outcomes [PROs]) are so helpful. Whether PROs predict treatment outcomes, they’re still useful to measure because the patient’s experience matters. Worse symptom burden was associated with progressive disease, a higher risk of hospitalization, and lower overall survival in this study. We don’t yet know if intervening to improve symptoms can improve these outcomes (though one study in non-small cell lung cancer did show an improvement in overall survival with specialty palliative care consultation).
How does a clinician balance or prioritize love and efficiency in their work? Ben Frush writes about how love and efficiency both confront death, but when I’m really sick, I want a clinician who is both efficient and loving. I want neither an efficient robot nor a compassionate quack. Love and efficiency sometimes appear mutually exclusive because human clinicians are fallible, time is finite, and we just don’t learn well how to do this. We can start by figuring out if we want to learn compassion as a skill to make us more efficient clinicians (by caring more, we get to the root of the issue more easily), or if we’ll cultivate compassion as a virtue because it’s good in and of itself.
“Surgical overtreatment and shared decision-making - the limits of choice”
These authors argue that more goes into surgical overtreatment that misinformed, malformed, or biased individual decision-making. This adds depth to the earlier work by Jennifer Blumenthal-Barby that elucidates individual cognitive biases. That’s part of it, sure, but there are also systems-level issues at play that promote surgical overtreatment and all sorts of bad medical decision-making. Just like respiratory failure might be the final common pathway of many diseases that require different treatments, so, too, is a bad medical decision perhaps the termination of many processes that each require different interventions.
“Medical cannabis or cannabinoids for chronic pain”
A very helpful way of presenting the evidence in this area. Importantly, this pertains only to chronic pain and not cannabinoids for other uses (e.g., psychiatric disorders, nausea, etc.).
“Emily in conversation with Katie Engelhart”
In this episode of The Nocturnists, Emily Silverman interviews journalist and author Katie Engelhart on her book The Inevitable: Dispatches on the Right to Die. I haven’t read the book yet and so I feel like commenting on the substance of the podcast would be incompletely informed. I did want to make one observation on something they discuss, which is this idea of “rational suicide.” As a psychiatrist and palliative care doc, I totally believe rational suicide exists. There are many reasons why people end their lives and not all of them are related to mental illness. Whether a suicide is rational or not, though, doesn't help us determine whether it's good. John Safranek argued way back in 1998, "It is not autonomy that vindicates an autonomy claim but the good that autonomy is instrumental in achieving." Where this lands us, Safranek observed and still is true today, is that "...the debate over assisted suicide is a conflict between competing theories of the good, and not a dispute between proponents of autonomy and the sanctity or dignity of life." The reliance on autonomy alone in this conversation reveals our stunted collective moral imagination. We need better ways of talking about this. I look forward to seeing how Ms. Engelhart’s book contributes.
These are poetic reflections from pediatric palliative care doc Chris Feudtner on the nature of hope. Some hopes are solid and specific. Other hopes are gaseous and ephemeral. Still other hopes are liquid, flowing, capable of eroding and dissolving other things. Clinicians would do well to see people who can hope for more than one thing as hope morphs among its different states.
“Loving someone through a different version of themselves”
A beautiful reflection from a speech pathologist on loving her father with dementia. “...So if you’re struggling with a new version of a parent, just remember how many versions of yourself they have loved you through.”
A fascinating discussion on the family of beliefs to which hope, denial, and unrealistic optimism belong. The authors make an argument that a patient’s denial is an insufficient reason for clinicians to intervene and try to persuade them to believe differently. The paper only addresses the patient’s half of clinical decision-making, though. How do clinicians choose to offer therapies? What are the circumstances in which a clinician can say this will (not) work vs. might (not) work? What is the relationship between the clinician's belief and the patient's belief? How responsible is the clinician for cultivating a patient's belief that ultimately motivates action? What does it mean that we shouldn't intervene to change a mental state when the healthcare system may have been initially responsible for cultivating that mental state? It's common to see a newly diagnosed patient with cancer met with hope from their clinician. The patient's hope and the clinician's hope reinforce one another. They both have treatment as their object even if they have different sources (e.g., religion, EBM, stories, etc). Even as disease progresses, they learn to sustain hope together. But sometimes the patient crosses a threshold, often in the hospital when they're very sick, when the clinician's hope shifts or wanes, and the patient's hope persists. Now the patient's hope is unrealistic. Now they may even be in denial. Relative to what? To the clinician's own hopes. Hope isn't something that springs from nowhere, but grows from the relationship a patient has with the whole healthcare system, nourished by other things like their cousin's success story, their faith, the popular press, the online support group, etc. And clinicians are influenced by similar things too, not just RCTs, because mere trial results are insufficient to tell us whether we should act. How do beliefs, whether belonging to a clinician or a patient, create a threshold upon which we act? And how is responsibility for those beliefs shared between clinicians and patients?
An excerpt from Ross Douthat’s new book on his descent into a world of debilitating symptoms. Most of the patients I see in hospice and palliative care have lesions to explain their symptoms, but as a psychiatrist I've seen many patients with medically unexplained symptoms, or their otherwise explainable symptoms are ignored because of their mental illness. All of them feel aggrieved by a healthcare system that doesn't listen, dismisses them, and is biased against them. Chronic illness and unexplained symptoms are where the rubber hits the road for compassion. Many clinicians want lesions to intervene upon, not people to care for. As Stanley Hauerwas observed:
Our pains divide us and there is little we can do to restore our unity. I suspect this is one of the reasons that chronic illness is such a burden. For often we are willing to be present and sympathetic with someone with an intense but temporary pain - that is, we are willing to be present as long as they work at being “good” sick people who try to get well quickly and do not make too much of their discomfort. We may initially be quite sympathetic with someone with a chronic disease, but it seems to be asking too much of us to be compassionate year in and year out.
“The real scandal about ivermectin”
James Heathers and his colleagues are “forensic peer reviewers.” That is, “we check everything, and try to ferret out any potential biases in reported patterns of digits, statistical impossibilities, inconsistencies between what researchers said they’d do and what they actually did, and plagiarized sentences or paragraphs.” They’ve uncovered a host of problems with the published literature on ivermectin and COVID, but more alarmingly, those problems exist in the broader medical literature too. All the more reason each clinician should have well-honed skills of critical evidence appraisal. We might not all become forensic peer reviewers, but we can always improve our skills here. Don’t stop at the abstract!
The latest issue of the AMA Journal of Ethics is all about palliative surgery. That might sound like an oxymoron given the invasiveness and burdensomeness of surgery, but as authors in the issue argue, sometimes surgery is the only thing that can help relieve far greater burdens for a patient suffering from a terrible illness.
Parting Thoughts
Everything is an oversimplification. Reality is messy and complex. The question is whether it is a useful simplification. Know the limitations of an idea and you can apply it to great effect—despite the messiness of reality.
James Clear, 3-2-1
Some might take issue with my use of the term "physician-assisted suicide" as opposed to one the alternatives (e.g., medical aid in dying, physician aid in dying, etc.). Philip Reed has published two articles in which he provides an extensive argument for why we should stick with the term "assisted suicide." I won't rehearse those arguments here. I'll only add that calling suicide (intentional self-killing) something other than what it is further stigmatizes those who die by suicide for other reasons (e.g., mental illness). Only people who kill themselves in a very particular way earn the "dignifying" stamp of "assisted death." Here are Reed's papers: Reed P. Is "aid in dying" suicide? Theor Med Bioeth. 2019;40(2):123-39. and, Reed P. Against recategorizing physician-assisted suicide. Public Affairs Quarterly. 2020;34(1):50-71.
Let us set aside for the time being those rare situations in which physical symptoms cannot be relieved by traditional means, as this deserves a discussion in and of itself.