Hope
Notes from a Family Meeting, Vol. 4, No. 12
I’ve appreciated the opportunity to work out my thoughts over two years and four volumes of Notes from a Family Meeting. I wish more clinicians would do it outside of academic journals. Thank you for your patience and good will as we’ve learned together and engaged in some conversation.
I’ve been surprised to see how my writing has coalesced around technology in healthcare. I didn’t set out with that goal in mind, but I’m glad that’s where my reading and writing took me. Over the next volume, I hope to develop this more, particularly the idea of “living medicine.” What is it, why do we need it, how is it vulnerable, how can we practice it? I also hope to test some of my observations about the machine in medicine.
In service to that goal, the regular monthly issue will be an essay similar in length and style to what you’ve been receiving. I’ll also send shorter, less polished notes that just begin to introduce a question or idea. I’ve mentioned before that one folly (the folly?) of modern medicine can be captured in the words of the Dodecahedron from The Phantom Tollbooth: “As long as the answer is right, who cares if the question is wrong?” I hope to sit before us some big questions that don’t have easy - or any - answers, so that we might sit before them. In some ways, the questions matter more than the answers, because they set the frame for what we see. They determine the range of appropriate responses. They constrain or open our thinking. They point us to the journey.
Modern healthcare is really good at getting a lot of right answers. Too often, though, I worry these are answers to the wrong questions: adjusting the blood glucose of a dying man (who asks, what is dying?), discerning bio-markers for dementia (who asks, what do people with dementia need right now, and how is dementia more than a neurobiological disease?), dissolving ethical dilemmas in our striving after a surrogate decision-maker (who asks, is this a good or bad decision, regardless of who makes it?), and so on.
I don’t know how to find different questions except to explore in the way I’ve been doing. We feel our way along. We poke at presuppositions. It might be uncomfortable for people who are accustomed to pursuing answers. It is for me, at times. I think, though, the importance is as great if not greater.
When I was in training, I joined an oncologist in clinic to talk to a dying patient - although he didn’t call him that. This man, accompanied by his wife, was ashen, skinny, and leaned back against the wall behind his chair. He longed for a bed.
Instead of dying-talk, the bad news was that there weren’t anymore treatments. The news hung in the air, infusing the man with nausea and his wife with fury. She didn’t yell, but made it clear they didn’t believe the oncologist at all. There was something out there, something else that would knock back this cancer like so many times before. “There isn’t. There’s no more,” the oncologist made pleas of their own.
She stormed out to find another treatment for her husband.
“Clinicians often struggle with imparting hope in providing patient care,” write Abby Rosenberg, Robert Arnold, and Yale Schenker. They continue:
“How can clinicians help patients hold onto hope? Should hope be protected, even when being hopeful is unrealistic? Or should clinicians risk a loss of hope to ensure that patients understand their prognosis?
These may be the wrong questions. Hope is neither dichotomous nor static. People have many hopes for things, and what they hope for evolves. Hope is a complex, continuous, and contextual process of appraisal and corresponding goal setting. Hope is directed toward something, such as living longer or living better, and it includes both agency (motivation) and pathway (self-efficacy). Hope consists of wanting something and perceiving it can be achieved.”
What should clinicians do? “…the role of clinicians is to help their patients recognize and diversify the breadth of their hopes.” They go on to suggest some strategies clinicians might employ for this purpose. Ultimately:
“[Holding hopes] involves questioning, exploring, and expanding a patient’s portfolio of hopes. It requires recognizing differences between tangible hopes for finding enjoyment in the moment and more nebulous desires for an unlikely future. It necessitates comfort with uncertainty and incompatible ideas. It entails readiness to navigate negative emotions. It demands continued conversation and willingness to both change directions and move forward without knowing what is coming. Holding hope also requires time and patience; acceptance and coping with serious illness does not happen quickly.”
Stephen Jenkinson is more pessimistic: “As long as you are hopeful, you are never in the land you hope for. If you bargain for More Time, you never live in the land of More Time. Your more time is spent bargaining or praying or hoping for More Time. No one seems to hope for what they have, and hopeful dying people rarely get the More Time they hope for, no matter how much More Time they get.”
Jaklin Eliott picks up on this, noting that hope carries both promises and perils. I could go on citing people modern and ancient. Hope, as a sister of religious faith, has been an object of meditation and striving for millennia. In a secular world, it’s now also the handmaiden of faith in technology. Whether it’s seen as good or bad, though, no one denies that hope is powerful. It invigorates and guides, builds up or tears down. Seeing its power, clinicians wonder: what am I to do with this? How do I assess this? How do I manage this?
Hope in the Machine
Diane Meier writes about a conversation she had with one of her oncologist colleagues. They were discussing the care of a mutual patient, Jenny, with lung cancer who had previously responded well to each treatment offered her. Jenny wanted to wrestle with the “what ifs” of her illness; her oncologist did not. After continuing the dance of meeting each advancement of her cancer with a new treatment, she finally developed brain metastases for which her oncologist recommended chemotherapy directly into the fluid space around the brain:
“Jenny was in today, and she mentioned that you had suggested intrathecal chemo for her brain metastases,” I said. “I told her I’d call to find out what you anticipated from this approach, since this is outside my expertise. What are you hoping we can accomplish with this treatment?”
After a brief pause, he spoke. “It won’t help her.”
I struggled for a response. “Would you want me to encourage her to go ahead with it anyway?” I asked, finally.
After another pause, this one longer and more awkward than the last, he said, “I don’t want Jenny to think I’m abandoning her.”
Meier continues:
“It seemed that the only way Jenny’s oncologist knew to express his care and commitment for her was to order tests and interventions. He felt that to stop doing this was akin to abandoning her. … The only way in which Jenny felt her oncologist had actually abandoned her, as she told me, was by his unwillingness to talk with her about what would happen when treatment stopped working.”
Meier focuses on compassion in her essay, but hope lurks behind every movement of patient and clinician, as it always does, for we must ask: if Jenny’s oncologist was worried about abandoning her, to what would he abandon her? Death, yes, and before that, hopelessness. Jenny’s oncologist saw their relationship mediated through the technology of cancer-targeted therapy. He also attempted to manage and mediate hope through that same technology. Some oncologists go so far as to say they “don’t want to take away hope” with their words or actions, so they radiate endless optimism and continue prescribing while their patient accrues physical, financial, and time toxicity with no apparent benefit. Jenny’s oncologist didn’t say he could take away hope, but he behaved that way. He believed hope and their relationship were found in the cancer-directed therapy he was prescribing. Jenny knew better.
This is hope in the machine: both hoping for the machine of medicine to act, and also hoping hopes shaped by what medicine has become. In this case, Jenny’s oncologist had been accustomed to using cancer-directed therapies to not only act on the pathophysiology of a person’s body, but to bolster and transform all social, psychological, even spiritual things. He had faith.
Faith and hope are sisters. Faith is a type of non-empiric belief. Hope is a desire for the future that is beyond the hoper’s control. Faith orients hope, and hope invigorates faith. When one hopes in medical technology, it reveals a new kind of faith. Maybe this is why some clinicians are afraid of “taking away hope” - because they feel they’re laying their hands on something sacred: their patient’s faith. The irony is that the clinician is the priest of this religion. They are the mediators between the patient and the sometimes deified medical technology.
The reality is that something is either possible or it isn’t. A clinician saying something isn’t possible doesn’t remove the hope. It clarifies the limits of medicine. Such talk of limitation jostles faith in medical technology. For Jenny’s oncologist, it shook him to his core: not just that the therapies might fail physiologically, but that the limits of the therapy might require discarding the ritual upon which all this relational and existential freight depended (or so he thought). What do compassion or hope look like without the mediation of chemotherapy? He would subject his patients not to proven therapies but to rituals that affirmed (what he thought was) their shared hope and the purpose of their relationship. That is faith.
It might offend the faithful to read that medicine isn’t a science. Medicine is a science-using practice with many other postures, movements, and facets. I often write about them here. There are elements of faith in medical practice that, in an attempt to secure the validation of scientific certainty, we don’t like to discuss. The most common varieties of this faith exist in the gaps between the evidence we gather from clinical trials and how we apply that evidence to the unique patient before us. We act with some degree of non-empiric belief in making those clinical judgments. Sometimes it’s with more or less warrant - e.g., we’ve seen this work before for a similar patient, or this patient is very much like the trial population, but it’s not 100% empirical. That’s not bad; it’s just the way things are. If we appreciate that, then we can also appreciate those qualities that can better help clinicians and patients navigate those gaps (e.g., wisdom). Medicine is never wholly a technical endeavor and therefore can never be fully standardized.
Jenny’s oncologist reveals another form of faith in medicine: this technology, studied and approved to treat a biological problem in the human body, will exert its power also over hope. It promises wholeness. It hides dying. If you ask anyone on the street, we all know we’re going to die. But if you apply enough medical technology to a frail human body, you might have tremendous trouble answering the question, “Is this person dying?” We submit someone to the altar of medical technology, transforming their living into an actionable array of numbers and other data for the sake of avoiding dying even as death itself is unavoidable. It seems like a paltry exchange when I phrase it like that, but it’s very alluring. It’s one movement of this faith.
Paul Kalanithi saw this in his own oncologist when he asked for a prognosis:
“You have five good years left,” [Emma] said.
She pronounced it, but without the authoritative tone of an oracle, without the confidence of a true believer. She said it, instead, like a plea. Like that patient who could speak only in numbers. Like she was not so much speaking to me as pleading, a mere human, with whatever forces and fates truly control these things. There we were, doctor and patient, in a relationship that sometimes carries a magisterial air and other times, like now, was no more, and no less, than two people huddled together, as one faces the abyss.
Doctors, it turns out, need hope too.
Maybe you think I’ve been unfair. These are sick people and their clinicians are just trying to do their best. So they are, on both accounts. I’m not judging anyone for having this kind of faith. I am warning about the magnitude and kind of power medical technology has over vulnerable people. In this case, both patients and clinicians are vulnerable because whether it’s magic or medicine, Tarot or technology, we’re primed to hope that technical interventions will save us from the condition of our own humanity. We so desperately want control. Sometimes, though, what we have isn’t a fix, but a relationship. It’s tricky when that relationship becomes bound up with our tools.
Human Hopes
The problem isn’t that our relationships are mediated. They’re always going to have some mediation through the tools we use together to pursue common goals and the communities and contexts we share. The problem is when we fail to account for that mediation.
I see in Jenny’s oncologist a lack of insight in how he was acting out of faith and how to do that wisely and well. At the other pole of the problem, though, is the clinician who acts with no apparent faith. They adhere rigidly to their evidence-based dogma. They’re quick to declare “futility.” These clinicians face the accusation of “taking away hope.” In either case, these clinicians stumble around the mystery that is the relationship between patient and clinician. Why wouldn’t they? They have no eyes to see. They don’t know that medicine is a kind of faith community. They don’t know what hope looks like outside the machine, or compassion, or suffering.
This is how medicine so easily vies for attention with traditional faith commitments for those who hold them. For whom that’s a problem, the answer isn’t to rid themselves of medicine but rather to properly situate medical care within the broader context of what that medical care is for. The machine of medicine cannot be allowed to set the standard for one’s life. It will inform our hopes but it shouldn’t hold our hopes.
What does this look like off the page, in real life?
Abby Rosenberg and her colleagues offer some recommendations. After doing so, they conclude:
“Rather than being concerned that hope is either so fragile that it can be lost, or so powerful that it can overwhelm decisionmaking, clinicians should remember that hope is protective, if not necessary, for managing serious illness. Hope is fluid, expandable, and persistent. Holding complex, flexible, and diverse hopes enables patients to believe in the unlikely while simultaneously accepting the inevitable. The role of clinicians is to support both.”
I worry they’re speaking a language many clinicians just can’t decipher. Support both an “unlikely hope” and “acceptance of the inevitable?” The word “support” carries a great deal of weight there. I’ve seen clinicians literally yell at their patients, eject themselves from a room when a patient starts to cry, and drag themselves exhausted through another day of rounds. I’m not sure how many clinicians understand what “support” would mean here.
I, like Warren Kinghorn and colleagues, worry that mere medicine may not have the resources within itself to sustain clinicians in the care of people, even while it continues to hone its power in the care of disease. We may need to learn from those communities that are well-practiced in seeing hope (among other things) and living by faith. Not so that we can improve our medical metrics, but so that we can preserve our and patients’ humanity in a healthcare system that so often feels like a machine.
To suggest that we can hold hope might be to open us to the temptation that hope can submit to technical intervention - whether in our words or deeds. If I’m honest that’s what the milieu of mechanized medicine tempts me to do: what is the right password for this conversation to make things better? “Better” might mean bringing peace, and it may also mean just arriving at a decision. I know, I’ve seen it, clinicians use flourishes of communication techniques just move things along. They reside in the uncanny valley and submit themselves and their patients to the machine. I don’t think that’s what Rosenberg et al. are suggesting, but the power of the medical context bends it in that direction (similar to how it transforms attempts at “whole person care”). We’re unprepared to “hold hope” until we become the kinds of people who can see hope for what it is.
What if instead we allowed ourselves to be held by hope? It would mean sacrificing a bit of the sovereignty clinicians sometimes act like they have. It would mean becoming a student of hope, even of faith. It would mean learning to see beyond blood pressure and creatinine to those things in life that make health wonderful and unquantifiable.
I don’t think it’s something the machine will teach us, but it’s something to hope for.
Trajectories
Following a meandering reading-path, sharing some brief commentary along the way.
“What does true equality in assisted dying require?”
An important response from Scott Kim to an increasingly popular argument in favor of “assisted self-administration” of the lethal drug used in assisted suicide in the USA. There are those people who, because they’re too weak, can initiate the procedure (required by law) but cannot finish. Some, like the authors of the article to which Kim responds, argue that it’s discriminatory to not help them. Kim argues that drawing the boundary there is arbitrary - what about the person who can’t even initiate? Either you argue that equality in some situations is deprioritized, or you admit that your present argument isn’t made in good faith but is only a strategic move toward greater expansion in the future. Ultimately, Kim settles on the only way to honor the equality of all humans: disallow assisted dying in all circumstances.
Zena Hitz, drawing on the lives of ancient intellectuals, observes the tension between leisure and work that persists even to the present today. Leisure, in this understanding, is not binging Netflix. Rather, it’s the pursuit of something for its own sake. Spending the afternoon reading - not so that you can write a book report or appear smart in a dinner party conversation, but just to enjoy the book - is an example of leisure. It does assume a certain level of privilege and control one has over their time. Whether you’re tethered to multiple part-time jobs or a touched-out stay at home parent, leisure time might be limited. What would it look like to try to cultivate it in community with others?
“What should clinicians know about palliative psychopharmacology?”
reflects on modifiable and unmodifiable aspects of psychiatric illness to better inform our understanding of “palliative psychopharmacology.” Being both a psychiatrist and a palliative care physician, this is something upon which I’ve ruminated - particularly in the context of severe and persistent mental illnesses like treatment-resistant schizophrenia and anorexia nervosa. Two aspects worth exploring further are the goals of care and the proportionality of treatment. Consider a condition like anorexia nervosa. The goals of care are also the limits of medicine, as trade-offs among them are inherent in the process of intervention (e.g., in order to live longer, you may be limited in what you can do as you spend more time in the hospital, and the process may be uncomfortable). As someone becomes sicker and more frail, clinicians may need to exert more force (and/or force more frequently) in order to achieve the same effect. Unless we allow for an ethic of preservation of life at all costs, we eventually allow for other goals to take priority over longevity. Psychiatric treatment makes this tricky because the patient themselves may not have the capacity to decide when or how this reprioritization occurs. Clinicians and surrogate decision-makers are left to ask: are we helping or harming with further longevity-focused intervention?Closing Thoughts
“I wouldn’t demand a lot of my doctor’s time: I just wish he would brood on my situation for perhaps five minutes, that he would give me his whole mind just once, be bonded with me for a brief space, survey my soul as well as my flesh, to get at my illness, for each man is ill in his own way.”
Anatole Broyard, Intoxicated by My Illness