On Families and Their Absence
Notes from a Family Meeting, Vol. 2, No. 9
“Get out.”
The resident stumbled through the interruption. They were very conscious of a small coffee stain on the lapel of their white coat. Taking a breath, they attempted to pick up their monologue again, “If we don’t do the…”
“I said, get out. We don’t want to talk to you anymore. We want a different doctor,” the wife’s voice was louder but not aggressive. Stern, like when she used to teach third grade and had to get a rowdy classroom’s attention. But the resident didn’t know she had been a teacher. Nor that she had slept in the hospital’s recliner last night. Her gray hair was pulled into a neat bun and her clothes were unwrinkled.
The room felt and smelled stale and sweaty, like fever. The blinds were half-drawn and allowed a view onto the roof of the hospital, casting a pallid light across the woman that didn’t reach her husband. She turned to face him, love and anxiety painting her face. The resident couldn’t see that either. The man’s nap was a welcome respite from his recent weeks of pain and confusion.
The resident weighed the burdens of persevering in their endeavor against those of returning to their attending with no signed consent form in hand. After a moment, they said they’d talk to the team and left. The room was quiet again except for gentle snoring. It was the only thing that felt like home here.
Family Names
Andrew Peterson wrote a story about a royal family, a mother, two sons, and a daughter, hiding in exile with the children’s grandfather. The family faced many travails together, and one of the most harrowing was when the boy-king was cursed to become a wolf-like creature. At first, it appeared the curse only afflicted his physical form, but over time he began to lose himself. He became worse than feral. His family didn’t give up on him though. Although they had to tie him down for his and their safety, they would remind him every day of his true name that he had forgotten. He would snap, bark, and growl, but still they persisted. At night, when they were alone, his brother would whisper memories of childhood games to him. Eventually, the boy-king remembered who he really was. Thanks to his family’s steadfast love, he was restored to himself and to his family, even if he still looked like a wolf.
I don’t want to over-draw the connections between this story and our experiences in healthcare. I bring it up to highlight one thing: when suffering makes people forget, when it threatens to dissolve everything that’s important, when it’s overwhelming, who is it that will call the sufferer back? Who is it that will speak their name in the darkness - their name being, of course, the symbol of who they are?
These people are mothers, fathers, sons, daughters, brothers, sisters, life partners, friends (through thick and thin), fellow believers or disbelievers, and so on. When I speak of family, I mean it in these broad, not necessarily biological terms. Families tell us who we are in the first place, help us find our way back there when we’re lost, and help us grow in the ways that are true to who we’ve been. They are roots for us, even as they also teach us to fly.
This isn’t the case for everyone though. Some families are absent or worse than absent. They give curses that afflict rather than names born of love. People bear these curses of shame, sadness, anger, or estrangement throughout their lives. Maybe they’ll try to find a new name for themselves. Still, the world is caustic, and they need others to help them remember that name.
Most families are a mix of both, blessing and curse. In other words, a mess.
It’s very hard to be the only one who knows your own name though. It’s not common to be totally bereft of family, but when it happens, it’s tragic, both because of the weight of loneliness that such a person carries, and also because they don’t have anyone to help them remember their name when suffering makes them forgetful.
Families in Healthcare
Clinicians have names for their patients too. Sometimes we learn patients’ own names, but other times we know them as “you know, the patient with dementia and cholecystitis on the fourth floor” and “the 46 year old woman with cervical cancer and young kids.” In a world where relationships with clinicians are brief because of career nomadism (on the part of both patients and clinicians), insurance, and sub-specialization, long-standing relationships with patients where clinicians really know their patients’ names aren’t common.
Medical names become more powerful as people become sicker. More time and effort are spent managing their influence on one’s life. Such is their power that these new names can write over someone’s family name. That isn’t the clinician’s intention; it just happens because of how our healthcare system is set up and because people are desperate to have their health issues treated. Who they once were might be lost amidst waiting rooms, offices, hospitals, and pharmacies, managing medications, care plans, procedures, appointments, symptoms, and disability. Wendell Berry picked up on this tension in his essay, “Health is Membership,” reflecting on his brother John’s heart surgery:
“In the hospital what I will call the world of love meets the world of efficiency - the world, that is, of specialization, machinery, and abstract procedure. Or, rather, I should say that these two worlds come together in the hospital but do not meet. During those weeks when John was in the hospital, it seemed to me that he had come from the world of love and that the family members, neighbors, and friends who at various times were there with him came there to represent that world and to preserve his connection with it. It seemed to me that the hospital was another kind of world altogether.”
True to Berry’s characterization of efficiency, physicians usually think of families in three instrumental ways: as sources of collateral history, as surrogate decision-makers, and as caregivers. Most other clinicians (e.g., nurses, social workers, psychologists, etc.) see that families are more than those three roles, but physicians, bent toward efficiency and the nature of their work, fit families in their puzzle in those ways. They (we, if I’m honest) need to use families for something. This means we have trouble understanding that families are name-bearers for those under our care. Families are little societies, with unique histories, stories (mythologies and legends, even, replete with heroes and villains), and secrets. As a patient treads into the physician’s clinic or hospital room so, too, does the physician tread into the patient’s family.
How would medicine be different if clinicians, especially physicians, saw their patients as belonging to families? A few tentative thoughts:
Families make clinicians humble. This patient is entrusted to me by their family. The objective part of health, as Leon Kass observed, is “well-working wholeness,” and that wholeness can’t be achieved by someone alone in a vacuum. Living creatures die in vacuums. My power to heal is thus curtailed when someone lacks a family. For those with families, I must cooperate with their authority; it’s not merely “doctor’s orders.” At this most vulnerable of moments, when someone needs help with their body, I’m invited into their life and into the life of their family. A clinician who resists this is foolish, and the humbling a family provides will be uncomfortable, if not painful, for them, though some clinicians have devised clever ways of avoiding it (e.g., discharging “difficult patients” from their care, avoiding conversations with family members, retreating into the dulling comfort of “respect for autonomy”). Clinicians are humbled also in caring for patients who lack families; there is no community in which to restore this person with whatever bit of health we might bolster. Wholeness is far more elusive for someone who lacks a family, and the clinicians’ interventions far less effective in restoring health.
Families speak their own language. This isn’t necessarily about health literacy, though that’s a component of it. Some families don’t speak the “D word” (death) or the “H word” (hospice) or the “S word” (schizophrenia). These taboos in the borderlands between the world of healthcare and the world of the family are attempts to enlist clinicians in secret-keeping. Families also speak words of love and embellishment in ways clinicians can’t and won’t. That isn’t extraneous babble on the way to getting the facts of the case. These things are what the family wants the clinician to know. They’re important. Or not: maybe the language of a family is vitriolic and hateful. Maybe the clinician tiptoes through a minefield with each conversation. Maybe deceptions abound. How does one work where these two languages meet? How does one try to find words that are helpful for someone who is sick and suffering? Sometimes it’s straightforward (“We can do a cataract surgery to help you see better”); other times, the translation is more elusive. It starts with listening, though. Not just listening for the history of present illness, but also for the story this family tells about how they’ve lived, are living, and want to live. I’d wager a guess it doesn’t often involve words like “creatinine,” despite that particular word’s importance to many clinicians.
Families bear burdens. A commonly uttered phrase in healthcare is, “I don’t want to be a burden.” The reality, though, is that our problems burden those who love us. Even the “able-bodied” burden those who love them with their issues and idiosyncrasies. One day, if it’s in the cards for them, they’ll burden their loved ones with their ailing bodies too, even if it’s just to complain about a runny nose and a cough, and won’t they run to the store to grab some medicine? It’s not that people themselves become burdens, but they bear the burden of their own suffering and illness. Those who care for them come alongside to bear those burdens with them. Sometimes that’s too much even for the companions. Their lives become restricted to mere caregiving. Friends, unsure of what to do, fade away. Hobbies and even work outside of this caregiving become difficult. Do clinicians see this when they meet with a family? Do they think about how to ease the burdens born by families? And for those who lack families, the lack of burden-sharing is starkly apparent. Even Jesus needed Simon the Cyrene to help him bear the cross.
Families are not efficient. Sure, there may be efficient processes within families (young parents usually become pretty efficient with changing diapers), but the family doesn’t exist to reach its end efficiently. Intimate relationships are inherently messy and slow-growing. What does it even mean to speak of an “efficient marriage,” “efficient parenting,” or “efficient friendships?” This is in sharp contrast to the institution of medicine, which, in its modern configuration, sprints toward efficiency. What happens when an efficient clinician meets an inefficient family? Families often want the clinician to slow down (e.g., “Come back,” “Explain that,” “Call me,” “He only spent five minutes with me”) and clinicians want the family to speed up. Clinicians want families to move from point A to B to C. Families want clinicians to meander with them, or at least meet them where they are.
The meeting together of clinicians and families in healthcare isn’t the creation of a new family. Instead, this is some new relationship: a very intimate relationship, if we allow it, something akin to family because of its intimacy and necessity, but subordinate to family proper because of its instrumental nature. Even the warmest, best clinicians aren’t there to just chitchat and eat leftovers; they’re there to do their job, and that’s something that can’t be said about true members of a family who belong just because of who they are (not what they do).
Recognizing this, clinicians have a choice in how they approach families. Just like any relationship, its soundness requires our attention and care. Berry again:
“Good artists are people who can stick things together so that they stay stuck. They know how to gather things into formal arrangements that are intelligible, memorable, and lasting. Good forms confer health upon the things that they gather together. Farms, families, and communities are forms of art just as are poems, paintings, and symphonies. None of these things would exist if we did not make them. We can make them either well or poorly; this choice is another thing that we make.”
Trajectories
Following a meandering reading-path, sharing some brief commentary along the way.
“Who are we caring for in the ICU?”
Daniela Lamas, an ICU doctor, writes of her experience in working to keep someone alive at the behest of their family. Not because the patient necessarily wanted this nor because they thought it was best for the patient, but because this is what the family wanted for a time. What does it mean to care for the family and not just the individual patient amidst critical illness? Is that even possible? Tensions like these almost always remind me of Wendell Berry’s short story “Fidelity,” about the death of Burley Coulter, one of the pillar characters in his fictional town of Port William, Kentucky. It reminds me that people belong to their families, not to the hospital. Of course there are limits (neglect and abuse come to mind), but one of my tasks as a clinician is to restore patients to community however I can. Sometimes that mean continuing life-sustaining therapy for a period of time as these people try to make the best decisions possible for their critically ill loved one. “Burley remained attached to the devices of breathing and feeding and voiding, and he did not wake up. The doctor stood before them again, explaining confidently and with many large words, that Mr. Coulter soon would be well, that there were yet other measures that could be taken, that they should not give up hope, that there were places well-equipped to care for patients in Mr. Coulter’s condition, that they should not worry. And he said that if he and his colleagues could not help Mr. Coulter, that they could at least make him comfortable. He spoke fluently from within the bright orderly enclosure of his explanation, like a man in a glass booth. And Nathan and Hannah, Danny and Lyda stood looking in at him from the larger, looser, darker order of their merely human love.”
“Palliative care is the umbrella, not the rain”
A helpful metaphor when talking with clinicians or patients who face a palliative care referral with trepidation. Umbrellas are helpful to have on hand because you don’t know when it will rain; likewise, early palliative care is helpful to address symptom management needs that arise in the course of an illness. I would add that for goals of care, early palliative care is a bit like a magical umbrella that can control the weather and even the climate. It can avert future weather-related disasters, like crises in decision-making, because difficult conversations were already had. It can also alter the entire experience of illness (i.e., climate), which includes but is more than symptom management.
“Time to benefit for stroke reduction after blood pressure treatment in older adults”
A helpful meta-analysis to consider when thinking about hypertension management in patients with shorter life expectancies. Time to benefit ranges from ~2 years to ~6 years. Importantly, this only looks at stroke and not other possible sequelae of untreated hypertension like myocardial infarction. Nevertheless, more studies like these in chronic illness management will be very helpful.
This story is one young woman’s reflection on her life at the boarding school Hailsham with her two friends. The way Kazuo Ishiguro wrote the story, you might recognize some scenes as echoes of your own childhood. Often, though, there is a dark shadow cast over them, lurking in an off-hand comment or in an assumption the main character’s narration. Never Let Me Go is a commentary on a possible world in which the health of society is born by the suffering of a select few. Such a society has become cold and efficient in its zealous pursuit of health. For us today, it raises the question: what would we, as a society, be willing to sacrifice for health?
“'Nothing about this felt OK': The troubling debate over a 'good' death for all”
This article helpfully covers a number of perspectives on this issue and adds depth and color to a discussion so often enmeshed with euphemisms and over-simplification. Canada’s deployment of euthanasia is what happens when compassion rushes ahead without wisdom. This is a portrait of a country that is rapidly bringing arguments in favor of this practice to their logical conclusion.
A retrospective study comparing decedents who received inpatient and/or outpatient palliative care with those who didn’t. Those who received any palliative care were more likely to enroll in hospice, have a DNAR order, have advance directives, and die at home or in an inpatient hospice unit. Outpatient palliative care specifically had shorter hospitalizations, longer hospice enrollments, and less ICU care at the end of life. The retrospective nature of this study means we can’t account for a major confounder: what if those patients who opt for outpatient palliative care are just more likely, because of who they are, to make decisions that lead to shorter hospitalizations, earlier hospice enrollment, etc.? This study is helpful for laying the groundwork for a future randomized controlled trial.
“How Tech Despair Can Set You Free”
Relying on Jacques Ellul’s The Technological Society, Samuel Matlack argues that despair in our overly efficient technique must come before any new hope rises to meet the needs of our dehumanizing age. We live in an age of “efficiency gone mad” which results in all sorts of problems. Although Matlack doesn’t get into it, we can appreciate how technique possesses the professions of medicine. As a result, medicine, meant to heal, actually becomes dehumanizing. If we despair in medicine’s promise to relieve us of the human condition (as argued by Gilbert Meilaender), then maybe we could cultivate a space for hope in a more human and humane medicine.
“Medical Ethics as Taught and as Practiced: Principlism, Narrative Ethics, and the Case of Living Donor Liver Transplantation”
A quick tour of some of the roots of modern medical ethics. Daniel O’Brien also argues how those roots, found as they in the Enlightenment, actually disempower principlism, the major framework that most clinician’s use for considering biomedical ethical dilemmas today. Principlism doesn’t help us move beyond Alastair MacIntyre’s charge that ethics, once it’s abandoned teleology, devolves to mere emotivism (that is, preference). This disempowerment becomes quite apparent in the exam of living donor liver transplantation.
Closing Thoughts
“She stands In the quiet darkness, This troubled woman, Bowed by Weariness and pain, Like an Autumn flower, In the frozen rain. Like a Wind-blown autumn flower That never lifts its head Again.”
Langston Hughes, “Troubled Woman”