In the Vale of Tears: Dying and its Prolonging
Notes from a Family Meeting, Vol. 2, No. 7
“He doesn’t get it. I don’t think he understands that he’s dying.”
Clinicians bemoan this on rounds and whisper it in work rooms when they’re worried the medical interventions they feel compelled to provide are futile in helping their patient. If only this person (or, as often, their family) understood, like we do, then they’d make the “right” decision. What they need is more information. Education is low-hanging fruit in these situations, but often bitter and poisonous. Usually these families don’t need more information - they know how bad things are.
Part of the problem here, I worry, is that we’re confused when we talk about dying. “How do you know when someone is dying” pulls for a biological answer. We’ll listen for the gurgle in the back of the throat, search the limbs for mottling, palpate for the weakening pulse. A person bearing those signs is “actively dying.” But does that mean they were only “passively dying” before? What does that mean?
This is often when a conversation about dying occurs for the first time with families, but sometimes it happens earlier. Dying in those cases has something to do with a lack of therapies that will substantially prolong life, or may even harm. Sometimes people are dying if they’re diagnosed with a terminal illness for which there is no treatment. Other times people are dying after they’ve exhausted every possible therapy. Someone can be dying from something in one part of the world while it would only pose an annoying challenge elsewhere. Dying is context dependent.
This dilemma is about more than medical therapies and physical exam signs. What are the socially and culturally-approved ways of transitioning out of the sick role into something other than “health?” This shapeshifting definition of “dying” is part of what makes talking about dying so bedeviling. What do we really mean when we talk about dying?
Role Confusion
Roles give us scripts telling us how to behave in certain situations. The roles of “mother” and “father” tell us how someone should behave to their children. The words themselves are containers that our cultures fill with all kinds of content about what it actually means to be a parent. So, too, we have roles like teacher, banker, physician, president, environmentalist, woodworker, dog-walker, and so on. Some roles are foisted upon people after a struggle, like “loser” or “criminal.” Some roles are better defined than others. “Patient” is a common role in healthcare that signals you’re under the care of a clinician.
Just because you’re a patient doesn’t mean you’re sick or dying. Think of an otherwise healthy person having their eyes checked; they’re a patient, but inhabit neither the sick role nor the dying role. People can also be sick or dying without ever being a patient. It does lend credibility to the role if its authorized by a clinician, though, as anyone who’s needed a doctor’s note knows. Sometimes a clinician and patient disagree about whether they belong in the sick role, with the patient trying to surmount the clinician’s authority to get out of or into the role. Either way, being able to inhabit the sick role, as terrible as it is, often confers benefits, like being free from work for a time and qualifying for additional support (informally from friends and family, or formally through government services). Of course that’s all highly context dependent; some families and governments don’t give a hoot if you’re sick, in which case the sick role confers other things, like stark vulnerability. It’s not just that you become physically infirm when you’re sick. Being identified as sick also makes you vulnerable to the schemes of others, even if they mean you well.
Like the sick role, the dying role can also be ambiguous and fraught with social peril. Stephen Jenkinson, author of Die Wise, wrote, “Dying is not what happens to you. Dying is what you do. … Dying is not a time for not dying.” He paints a portrait of the dying role as one of significant agency. People have a choice about what to do with their dying, if only they acknowledge it. But acknowledging it is the trick, as so much in our culture militates against dying. People die without ever dying. He observed that the culture renders unto its people thousands of ways of “not dying,” of avoiding the important tasks of dying. As far as I can tell, this happens for at least two reasons:
Dying is terrible. As Allen Verhey observed, death threatens to separate us from our loved ones, from God, even from our very selves. It ruins our plans. It breaks our hearts and spoils our hopes. It’s no wonder, then, that we’d rather not talk about it. It’s no wonder we’ll do anything we can to avoid it. It matters little that it’s guaranteed for each and every person eventually.
Dying is pointless. There is great hope in the sick role. If you’re sick, you may get better. If you won’t be cured, at least you’ll receive treatment aimed at making you stronger or helping you get back into the normal rhythms of your life. Or even creating new rhythms, but at least you’ll live. I don’t mean to romanticize this. Some wither there under the afflictions of their treatment, for lack of an appropriate diagnosis, or for want of a compassionate, competent clinician. But, in general, medicine makes great promises to the sick. Dying, on the other hand, in our secular culture, is pointless. There’s a history behind this that I can’t explore but has been reviewed by others (e.g., Dying in the Twenty-First Century). The promises have evaporated. There is no hope for recovery. There is no hope for better things. What’s a dying person to do except languish? It’s much better to linger too long in the sick role than face that, right? Ironically, though, most people (not all, but most) say they would prefer to die at home, implying they would, at some point, leave healing hands and assume the dying role. But that moment is often just one more treatment or one more hospitalization down the road, indefinitely delayed as they follow the shining promises of medicine.
Medical technology is very good at hiding dying. When, after all, can we say someone is dying? When they’re born? When they receive a diagnosis of serious illness? When they’ve exhausted all disease-directed therapies? When they’ve exhausted all life-sustaining therapies? When they’re undergoing CPR? As long as someone continues to be the recipient of disease-targeted therapy, they usually remain unavailable to assume the role of someone who is dying. The default position is to continue medical therapies; you need to make an active decision to stop. Our loss-averse minds don’t like “stop” or “none.” And so the conversations are related to making numbers move in the right direction, adjusting doses of medications, and assessing eligibility for procedures, rather than delving the deeper social and existential reality behind the technology.
This role confusion between the sick role and the dying role generates immense conflict. You might hear stories of patients jumping pre-emptively, in clinicians’ eyes, from the sick role to the dying role. Sometimes they aren’t really allowed to do it, like in the acute period following an organ transplant. Usually, though, conflict centers on a patient and family that resists the healthcare team’s assertion that they should move from the sick role to the dying role. Clinicians balk when their authority is resisted. We do it when patients resist the sick role (or the denial of the sick role), and we do it when they resist the dying role. Shouldn’t our authority be sufficient in authorizing this role transition?
But it’s not. It’s not because the dying role is not a mere physiologic process but a social construction. A culture agrees, sometimes tacitly and sometimes explicitly, what it means for someone to be dying. There may be signs to herald its coming and rituals, like the ars moriendi, to guide someone through the role and give them their lines. Because of the biological reductionism that marks our current practice of medicine, modern clinicians have very little to bring to the table when we negotiate with society about what it means to be dying. All we offer are the bare physiologic basics: raspy breathing, mottling of the skin, diminished urine output, and so on. But most of those happen so late in someone’s illness that they aren’t helpful in discerning whether someone should have entered the dying role sooner.
What happens instead is that it’s up to individual patients and their families to decide when and if they’ll assume the dying role. That causes problems because the role as such can’t be idiosyncratic. It needs to be jointly constructed by everyone: patients, families, clinicians, and all of society. Healthcare teams often have a tacit understanding of dying that varies from setting to setting (e.g., transplant surgeons probably understand this differently than geriatricians, and both in a first world academic setting differently from a rural third world setting). Whatever they believe, it’s probably different from patients and their families. This disparity inflames conflict and provides the occasion for patients to fall into all kinds of medical technology that harms them. That harm isn’t apparent unless we know what it means to harm a dying person.
“So what,” some might shrug, “It’s their choice.” Barely. This is how we’ve constructed the decision for them. Modern medical technique has contributed to the desiccation of the dying role. If that’s true, then we bear responsibility in helping to clear the confusion over what it means to die in this century and our society.
Prolonged Dying
This confusion also contributes to the idea of “prolonged dying.” As best I can discern, when we prolong dying, we sustain someone in a state of hopelessness, outside the bounds of the sick role. The promises of death (in dependence, in disability, in suffering) overwhelm the promises of medicine without the actual release of death. Some see daily living with a chronic illness as a form of “prolonged dying” because of tremendous suffering or loss of function. As I wrote elsewhere:
“It is difficult to discern when one actually starts to die. Although dying surely entails a loss of independence at some point, losing independence doesn’t necessarily mean one is dying. What, then, are we trying to say when we claim someone is “dying”? The Times article tells the story of the “protracted death” of John Rehm (first husband of Diane Rehm of NPR fame) who, struggling with Parkinson’s disease, “could no longer stand, feed or toilet himself” and whose doctors “could not legally grant his plea to help him die quickly.”
Dying, the idea goes, isn’t truly living. It is a process of irreversible loss and suffering, and should be as short as possible. Thus to claim someone is dying is to make certain claims about how the person should act and how we should treat him. To call the period of diminished independence not only dying but protracted dying is to imply that it should end sooner. This places an immense burden on some of the most vulnerable people, who, by this evaluation, may themselves be in the throes of ‘protracted’ dying.”
This language is invoked to suggest we should abstain from delaying death or, as is increasingly common, do something to expedite death. This involves an evaluation about what’s meaningful or not at a certain point in someone’s life. Naomi Richards and Marian Krawczyk remark, “Whether a person seeks to extend life or hasten death depends on whether the individual, and those around them, perceives a meaningless prolongation of dying or a meaningful prolongation of life. Both life-extending and death-hastening techniques can be understood as manifestations of a Western denial of dying.”
Bound up in our understanding of dying, then, isn’t just physiologic knowledge of how the body breaks down, but valuations about what it means to live, to be healthy, and to die. Richards and Krawczyk again: “Dying is therefore best understood as a collective social process as much as an individual biomedical event.” The insidious difference between “prolonged dying” and living with a chronic, life-threatening illness is an evaluation about what lives are worth living that plays on the ambiguity of what it means to die. Within this context, people make the choices they inherit from the culture that forms those choices.
One additional cause for prolonged dying is role insufficiency. Carol Williams noted that the dying role is particularly vulnerable to role insufficiency because of a lack of an appropriate role definition, misperceptions of role relationships between the dying and others, inadequate knowledge of appropriate role behavior, and the absence or misperception of role cues (e.g., continuing treatment even in the face of dying). In the face of one’s mortality and this burdensome role insufficiency, the resolution seems to occur in death itself rather than in resolving the role insufficiency via a better understanding of what it means to be dying.
This insufficiency also metastasizes to those tasked to care for the dying. Caregivers, professional and family alike, struggle to know what to do with themselves. Williams concluded, “To the extent that health professionals avoid responsibilities related to the dying patient, they foster continued neglect, isolation, and inadequate role performance on the part of the dying.” We can’t know what those responsibilities are, though, without first understanding the dying role. Building, entering, and sustaining these roles is dynamic between those who are dying and those who care for them. In the role confusion between patient and clinician, then, we could inadvertently “prolong dying” by exacerbating role insufficiency without the release of death (which, without other options, appears to be the only available off-ramp out of suffering).
The Art of Dying
In the face of overwhelming death from the bubonic plague of the 14th and 15th centuries, Christians developed the ars moriendi, the art of dying. I can’t do justice to explaining it in detail here, but suffice it to say, this was a formal set of practices that helped both the dying and their community to navigate the task of facing imminent death. It simultaneously buoyed and demonstrated the faith of the dying while preparing those in the community for when they would one day die. It’s morphed through the years and has become more secularized, but there’s very little of its formal structure remaining today. Other cultures and faith traditions developed their own ways of dying, also increasingly absent from today’s homes and hospitals.
Physicians like Lydia Dugdale hope to recover the “lost art of dying” for use in our time of vast pluralism and secularism, rife with the role confusion and insufficiency I described. She hopes to bring ancient wisdom to modern medicine, both for those dying and those caring for them. Her chapters headline what she understands to be the major tenets of dying well, from appreciating death and our own finitude, to wrestling with fear, to embracing one’s embodied nature, to engaging rituals of care for the deceased and for our own grief.
It’s a start. Still, we need more help in navigating the transition from sick role to dying role. Hospice, for example, helps to carve out a space where the dying role might be imagined but this remains a challenge. As Farr Curlin writes,
“Without a framework in which suffering, loss of control, and even dying can be received with gratitude and can disclose to the sufferer new and worthwhile tasks, the putative goal of medicine - to preserve and restore health - seems beside the point. Health for what? If no morally significant tasks remain, it seems that the minims of health that [hospice and palliative medicine] might secure are goods in some abstract sense, but they are good for nothing. In these naturalistic philosophies of life, the only reasonable response to unwanted suffering is to be rid of it. In this context, compassion, compels those who are able to relieve the suffering of their neighbors using the tools at hand. If doing so means breaking free of the traditional constraints of medicine, so be it.”
In theory, hospice provides that minimal framework but it stumbles in filling the role with content. It’s not just that there’s an absence of the role. There is, as Jenkinson observes, a real role of “not dying,” different from the sick role in its vehement denial of limitation and death. It has its own formative influence over how people die. Curlin mentioned receiving suffering, loss of control, and dying with gratitude. Perhaps in some form of the dying role this might be possible. In the role of “not dying,” these things don’t even make sense. We talk past one another.
Life-sustaining therapies may be the most prominent technological feature in the role of “not dying,” but they’re not alone. Assisted suicide and euthanasia (ASE) are playing an increasingly bigger part. Because our culture has “death with as little dying as possible,” Richards and Krawczyk note that advocacy for ASE is able to draw value from cultural scripts that were once attached to dying itself and signaled a so-called “good death.” Ultimately, “assisted dying is not so much a cause but rather a symptom of a cultural loss of meaning in the human experience of dying.” This doesn’t deny that many who participate in ASE ritualize the practice. One of the advantages is people can schedule their goodbyes as they see fit. But this is something different than assuming the dying role as it’s traditionally understood, and doesn’t settle the question of whether death should be a goal of care.
Stephen Latham, relying on the framework laid out by Nicolai Hartmann, argues that bad deaths occur when we’re confused about our values. The preservation of life and health is a strong value in that its deprivation is a grave wrong. It’s also a low value in that it’s necessary for the achievement of many other “higher” values, the likes of which merit praise. For example, someone needs a degree of health in order to be an artist capable of producing great beauty. To the extent that you don’t have health, you may need help shoring up that lower, stronger value in order to achieve the higher value. However, failing to achieve beauty isn’t a great wrong against you, which makes it a weaker value than failing to preserve your health. “A person’s death is bad,” Latham writes, “Insofar as it violates that person’s strong values; a death is good insofar as it enables high values to be instantiated or affirmed.” This means, all deaths are shaded with evil, but some have the possibility of reaching for a higher value. He goes on to make the point more forcefully: “A death that involves violation of low values (suffering, anxiety, loss of life) that isn’t redeemed by some compensating achievement of higher value (patriotism, courage, religious fidelity, family love) is, everywhere and always, a bad death. A death that minimizes violation of low values and permits the achievement of higher values is a good death.”1
So, what’s the point of dying? We need a dying role to inhabit a space where this is possible: where we’re free to take our eyes of the pursuit of health for health’s sake and instead spend time and energy pursuing other things, like those “higher” values. That doesn’t mean forsaking health altogether. We could appreciate, though, how health might be used in a different way when someone is dying, and care for health in a different way too. Our finitude teaches the humility to do that.2 Without anything in this role, this is impossible, because “loved ones often die fighting for strong values in a way that excludes their achieving higher ones.”
My objector might retort again, “So what? That’s their choice. Some people just want a simple, quick, comfortable death.” Perhaps. Perhaps they want no reconciliation, no thanksgiving, no blessings passed ‘round, no expressions of affection, no reflection on their life. Perhaps there are none available for them as they pass lonely from the world. To the extent that we affirm this way of dying, though, we also affirm this way of living. I’m not in the business of twisting arms either way, but so much of life is spent trying to figure out how to live well - buy this, go here, cheer for that sports team, believe this, etc. - that it would silly to say we should abandon patients with serious illness to a default way of “not dying” that they’ve unconsciously inherited from our medicalized culture.
In sight of all that, might I offer a humble, incomplete proposal? This is intended to help us discern a dying role together and begin to fill it with content.
It’s very difficult, if not impossible, to help someone with a role transition if you don’t know their current roles. Sure enough, a major role transition here is moving from sick to dying. But what about from speaking to silent? From caregiver to care-receiver? From employed to retired? From seeing to blind? From strong man to frail man? The transition to dying isn’t monolithic but involves dozens of role losses and transitions, each of which must be navigated with more or less difficulty. That “challenging” patient for whom you’re caring? They might be struggling to understand how they can lay down the mantle of parental caregiver so as to receive care in their dying days. Getting to know someone and all the roles they inhabit isn’t a talisman against role confusion and insufficiency, nor does it mean you’re the one to help them with all those transitions, but it’s a start in helping them on their illness journey.
Seek to discover how this person sees the dying role. Do they belong to a culture in which the script is already available? I would say most of the people for whom I’ve cared don’t have particular rituals around dying, anticipatory grief, or the like. But maybe they have some ideas. “How have you thought about dying?”
Shift away from a medical frame of their experience. Most people with serious illness have been well trained to anticipate labs, scans, pharmacy visits, doctor’s appointments, and recurrent hospitalizations. Their daily schedule is spent trying to hold themselves together against advancing symptoms and dysfunction, usually using medical interventions. Although medicine doesn’t and shouldn’t abandon someone who is dying, the frame is different and far more limited. Hospice and palliative care risks being just as totalizing as life-prolonging medical care if it continues to drench someone’s life in measurement, analysis, and medication management. There is certainly a place for those things, but dying is an opportunity to regain some agency by turning away from the sick role of the patient. An example of this is in James Griffith’s and Lynne Gaby’s approach to demoralization in medical illness:
Adapted from Griffith, J. And L. Gaby. Brief psychotherapy at the bedside: countering demoralization from medical illness. Psychosomatics. 46:2. 106-116. See more hope. This is a classic move in serious illness communication: “What are you hoping for?” Patients often offer the obvious: to get better, or to live longer. You need to frame the question appropriately, usually after you’ve provided some thoughts about the current state of their health and a holistic prognosis. But don’t stop with this one question. “And what else?” They offer another hope. “And what else?” Keep going. The thing about hoping for More Time, as Stephen Jenkinson observes, is that most people don’t realize it comes with More Dying. More Time is inevitably spent in the shadow of one’s own mortality, whether it be for ten days or ten years. How will this shape hope?
What do the four most important things mean to this person? Ira Byock wrote a fantastic book, The Four Things That Matter Most. He shares stories that highlight the importance of four things we say to one another: saying “I love you,” “I’m sorry,” “I forgive you,” and “Thank you.” It’s not that these phrases are magical; they stand for big conversations and major relational tasks. The great thing about these is we shouldn’t wait until we’re dying to engage them, but they are very important to engage if we are dying.
Trajectories
Following a meandering reading-path, sharing some brief commentary along the way.
“Extending Drug Monopolies by Patenting Safe Drug Use”
Brand name drugs cost more. But that doesn’t last forever: patents for novel substances eventually run out and, barring a patent-extending indication, generic drugs can move into the market to compete and hopefully drive down the price while improving access. But pharmaceutical companies are learning new ways to protect to their monopolies: they use very small trials to discover nuanced data about safety and then patent the instructions about safe use of the medication. Maneuvers like this show that pharmaceutical companies are, of course, businesses selling a product. They have no mandate to serve the public.
“Turning the lens inward: the psychological elements of clinical well being”
These authors have produced a series of articles for the Journal of Palliative Medicine focusing on important psychological elements of the palliative care encounter. This article, as the title implies, focuses on the clinician rather than the patient, highlighting the importance of boundaries and countertransference. They recommend various types of supervision and mentorship to help one navigate the uncertainty, moral distress, and challenges inherent in the palliative care encounter. Countertransference comes off a little one-dimensional; it’s more than the mere feelings we have for patients. It’s informed by our prior experiences in life, particularly in childhood, and sometimes isn’t so easily managed in the ways the authors offer. Furthermore, if we engaged in activities like peer supervision just for the purposes of “self care,” we desiccate morally formative practices like individual and communal reflection into mere fuel to ward off burnout.
“Representation and Outcomes of Individuals With Schizophrenia Seen in Everyday Practice Who Are Ineligible for Randomized Clinical Trials”
Generalizing the results of a trial to the patients you’re actually treating is always a challenge. Those running trials in the treatment of schizophrenia don’t make it any easier because the trial participants are often so unlike the patients we’re seeing in practice: they may “only” have schizophrenia with few, if any, other medical or psychiatric comorbidities. In this particular trial, 79% (!) of the patients with schizophrenia evaluated would be ineligible for a randomized controlled trial. That seems about right for the patients for whom I was caring when I was working as a psychiatrist.
“Wabi-sabi: a virtue of imperfection”
I had heard of kintsugi, the practice of repairing broken pottery with gold so that the imperfections are not hidden but rather shine with new beauty, but wabi-sabi is new for me. As best I can understand it, it has to do with transient, imperfect beauty. Indeed, the transience and the imperfections are part of what the thing beautiful. Dominic Wilkinson takes the concept and applies it to physical imperfections in the human body, disability, and death. Although only a brief reflection, it offers a playful introduction into how this art form might frame medical care in a unique way. “Autumn twilight falls / The road ahead stretches out / Empty and forlorn.”
“Death and dying in car real America: the prison hospice as an inverted space of exception”
Lesley Sharp writes poignantly of the lives of inmates who service as hospice volunteers within a prison. Conditions for anyone are poor, including those who are dying, and hospice volunteers step into a risky role, as any demonstration of care or compassion for another person might betray vulnerability. Yet the work also provides an opportunity to testify to the dignity of the one who is dying as well as an opportunity for transforming the monotony and noisy meaninglessness of prison life for the volunteer (who themselves may one day become a patient on the same hospice unit).
Closing Thoughts
“There, peeping among the cloud-wrack above a dark tor high up in the mountains, Sam saw a white star twinkle for a while. The beauty of it smote his heart, as he looked up out of the forsaken land, and hope returned to him. For like a shaft, clear and cold, the thought pierced him that in the end the Shadow was only a small and passing thing: there was light and high beauty for ever beyond its reach.”
J.R.R. Tolkien, The Return of the King
Latham doesn’t engage the possibility of achieving one’s higher values at the expense of someone else’s lower values - e.g., pursuing your patriotism via my death. That’s beyond my scope here.
Latham remarks that those who die suddenly and unexpectedly can’t be said to have died a “good” death, even if they don’t suffer a “hard” or “bad” death. This is because there is an “absence of any chance to achieve any higher values.” Reflecting on a woman who dies suddenly from a stroke, “nothing about the manner of her death said anything about her, or permitted her to affirm anything about or to herself.” I think Latham might be mistaken, though, for there seems to be a difference between a person who suffers a fatal stroke while robbing a bank and someone who does so while gardening. We might impute on the deaths moral meaning or questions (e.g., “They got what they deserved,” or “Why do bad things happen to good people?”), but death also provides an opportunity for the bereaved to see a person’s life in a new light, such that the circumstance of their death does affirm something about how they lived.