The Goals of Care
Notes from a Family Meeting: Vol. 1, No. 9
I learned early in my medical training that the phrase “goals of care” is usually a euphemism for talking about withholding or withdrawing life-sustaining therapies, changing code status, and making decisions to pursue a comfort-focused plan of care. I never heard that phrase uttered, or uttered it myself, during a pediatric well-child check, during a psychiatric hospitalization, or when offering outpatient antibiotics for a urinary tract infection. Even if we assume we know the reason someone is seeking medical care, I’m convinced that all care needs a goal, not just care at the end of someone’s life. I hope I can sketch out something that shows the goals of care can be, and are, so much more than a euphemism.
One question should set us off in the right direction. It’s a question that is so plain and unremarkable, we rush past it to admire the greater discoveries of life science and medicine. Let’s ask this mundane question now: “What is healthcare for?” That’s the same question I ask as I set out to help orient folks to their complex health needs. From cancer to arthritis to a broken arm, we use healthcare to pursue some or all of three things: longevity, function, and comfort. These are the goals of care. That isn’t to say that these three goals exhaust what health is, only that medicine has three essential ways in which it can intervene to support and restore health.
As people fall ill and weaken, they prioritize, explicitly or implicitly, these three goals in different ways. Once upon a time, they may have enjoyed all of these without thought or consideration; now they must choose. Decisions favoring one goal come with trade-offs elsewhere. When someone’s seriously ill, it’s rare that we can satisfy all three goals equally. That’s the tragic reality, and a limit of healthcare we must recognize lest we harm our patients.
Harm comes not only by hurting the body, but also by doing things to someone that don’t help them pursue any goal that’s meaningful to them. This can happen when clinicians believe that the care they usually offer is what most people want and need; the result means sometimes receiving care that doesn’t work or doesn’t align with the patient’s goals for their health. Doing that, we can fail to intervene in ways that actually foster health. That isn’t to say all health boils down to the merely subjective (as I said, health is more than these goals), but that some portion of health relates to the how someone wants to use it. It’s much better when patients and their loved ones bring a firm understanding of their goals to a healthcare discussion because they’re better equipped to appreciate the limits of medicine and the trade-offs they’ll have to make pursuing what matters most to them.
Longevity
Some people want to work hard at living as long as they can. If someone isn’t alive, then the other two goals seem irrelevant, so this goal can dominate conversations, time, and effort. As a result, medicine has become adept at providing this kind of care. While perhaps the biggest strides in lengthening the human life span have occurred at the level of public health (e.g., water sanitation), individual medical care directed at longevity has its success stories too (e.g., percutaneous coronary intervention for STEMI, treatment of some cancers).
Yet when facing serious illness, the traditional model of life-prolonging care for which we laud modern medicine too often misses the mark – it’s burdensome, adds or exacerbates symptoms, and may not actually extend life, the very thing it promises to do.1 In pursuing this goal, patients might spend more time in facilities away from home and family with less control over their daily schedule. Medicine isn’t always gentle, and interventions aimed at prolonging life yield varying levels of discomfort, maybe even harm or disability. And there are no guarantees: hard work on the part of the patient and healthcare team may not translate to a longer life.
Even still, I don’t discourage patients from pursuing this goal. I do, however, want them to understand what it might be like to pursue it. I’m a palliative care doc, and palliative care isn’t at odds with pursuing longevity. I want to help patients live as well as they can for as long as they have. That’s what palliative care is all about.
Here’s something else a lot of folks have experienced. The longevity goal can foster conflict between clinicians and their patients when they disagree about what’s going to help. None of us want to harm our patients, and when clinicians believe they’re providing “futile care,” moral distress grows and compassion withers. This is particularly true for nurses who carry out, sometimes with deep reservation, someone else’s plan. It’s made worse when patients or their families request “everything.” One reason for that might be that they don’t trust they’ll get the best possible care otherwise; that distrust doesn’t provide good soil to grow a therapeutic relationship.
In the face of such difficulties, two things (among others) help me: first, it helps to see myself as a hospitable companion who walks with my patient across the landscape of their illness rather than as a mere provider who portions out impersonal parcels of disease-directed treatment. One would think increasing the emotional distance between ourselves and the “consumers” would help us resist fatigue, but it also widens the gap between our work and the compassion that should invigorate it. The corrosive nature of suffering, which we need compassion to face, remains unchanged. Seeing myself as a companion, a co-laborer, even a co-author, helps to situate and humble me within my patient’s story, as one human alongside another. First and foremost, I care for a person, and caring for people is messy business. Entering the encounter knowing that it’s a human encounter, and not a laboratory, helps me to set my expectations well from the start.
Second, I try to use informed consent to support an ongoing conversation that centers the goals of care, the state of the patient’s health, and the medical interventions used to pursue both. Too often, informed consent in these situations is a procedural formality involving the murmuring of various statistics and likelihoods divorced from any meaningful anchoring in the patient’s own experience. We can contextualize that a little better.
There’s more to be said there, much more, but with that introduction to the longevity goal, let’s move on.
Function
I remember another clinician and I were discussing the plan of care for our mutual patient. The patient’s life was on the line, but they also risked significant impairments of cognition with treatment. I attempted to bring the patient’s voice into our deliberations, as their concern about impairment may have provided a limit on what treatments they were willing to accept. “Death,” my tenacious colleague replied, “causes that impairment as well.” True though that may be, it missed the mark. I’m amazed how often facts in the world of medicine don’t provide the right answer. That’s pretty disorienting for those of us formed under repeated standardized, multiple choice testing. I’m not advocating for a post-truth practice, only that facts require contextualization. Facts unmoored from the reality of someone’s life may be useless or even harmful. For our patient, they could pursue function without pursuing longevity, and in fact, avoiding some treatments may have been the best way to do that.
Some people want to work hard to do something. There’s so much in this goal: fishing the pond with friends, talking to a grandchild, walking, eating pizza, working a job, attending a graduation, or getting married, just to name a few examples. Depending on what’s going on with someone’s health, pursuing this goal is probably going to take a lot of effort from the patient, perhaps in the form of rehabilitative therapies or surgeries. It may involve, like our aforementioned patient, avoiding some therapies that could cause intolerable functional deficits.
Some are chased toward this goal by the fear that they might become a “burden.” How often have you heard that - “I don’t want to become a burden?” Maybe you yourself have said it. For many, independence is a hallmark of human dignity, so exploring this goal provides an opportunity to explore together this facet of the human condition: we need one another. Dependence is the reality; independence is the illusion. To love and be loved is to give and receive burdens.
That doesn’t mean I downplay the real desire to maintain and improve function, to keep doing or to do once again what one loves to do. If I can help someone with that, all the better. But losing function is also an inevitable aspect of being a frail, mortal human. Eventually, it happens to us all, either quickly or slowly, in part or all at once.
How clinicians view families can exacerbate this perceived burdensomeness. Maybe it’s easy to miss the love between patients and their families because the pathophysiology of the individual patient is our fundamental unit of concern. With that mode of thinking, we risk reducing family members to mere “caregivers.” Their primary roles are to supply additional history to inform diagnosis, to make decisions if a patient can’t, and to ensure a safe and ongoing plan of care outside the clinical setting (or at else cooperate as “clinical setting” expands to include the home). Viewed as such, what more could patients do but burden these whom we call caregivers?
Families are so much more than this, as anyone with a family knows. They’re the little societies in which we’re first formed and continue to grow physically, mentally, emotionally, socially, and spiritually. Whether your own experiences with family have been tender or terrible, the vast majority of people belong to some non-instrumental group (sometimes blood relatives, sometimes not).2 That is, they belong just because of who they are, and are held with bonds, weak or strong, of love, creed, or something else.
Those people who live beyond the veil of their diagnoses are not burdens. Instead, serious illness is the burden they and their loved ones carry together, each in their own way. Pursuing this goal shows us all (patients, families, and clinicians alike) what it means to carry one another’s burdens in love and patience. Reframing the pursuit of function in this way helps us and our patients to better appreciate that dependence is more reflective of human dignity than isolated (and isolating) autonomy.
Comfort
Another group of people want to work hard to minimize their symptoms. Pursued alone, comfort can be an end unto itself, especially at the end of someone’s life when symptoms can be overwhelming and trade-offs immense. But short of that, it’s usually not pursued alone, as people want to be comfortable for something: to enjoy time with their family without pain distracting them from the conversation, for example.
Pursuing comfort is the goal of many forms of healthcare we don’t even give a second thought, like taking a mild analgesic for a headache. But when you’re seriously ill, it requires explicit consideration because it’s vulnerable to being compromised by illness and all the things we do to pursue longevity and function. That means pursuing comfort in the midst of serious illness might involve counteracting the adverse effects of other medical interventions, or even withholding or withdrawing those interventions. Pursuing comfort isn’t mutually exclusive with other goals, but such comfort is fragile.
We don’t always need a medication to bring someone comfort, either. That’s true for things like suffering and demoralization. Sometimes a word brings comfort. Sometimes it’s psychotherapy. Sometimes it’s a spiritual practice. Sometimes it’s simply a shared silence. In seeking symptom relief, we gesture toward a deeper, richer peace. Symptom relief at least let’s someone glimpse the memory of the way things That peace may only fall dappled and fleeting across the shadows of someone’s afflictions, but if I can help the light shine a little brighter, I’ve done my job well.
Goals for the Journey
By now, I hope I’ve got you thinking that these conversations can inform care across the lifespan, not just at the end of life. Longevity, function, and comfort are things we ask of healthcare no matter our problem or prognosis.
Not all healthcare is good healthcare. Good healthcare helps people preserve and restore their health, within the limits of that health and the limits of that care. Our recommendations should vary based on the goals patients and their families wish to pursue, taking into account other things like logistics, legal matters, ethical nuances, and clinical constraints. Aligning with patients and their families around the goals of care is a big step toward forming a properly functioning healthcare team. When you don’t have that, teams can fracture along the fault line between clinicians and families.
After I explain these three goals, I usually ask some variation of, “Given everything you know about what’s going on with your health, what do you want to work hard to pursue?” Some other questions I might put in the hands of my patients for their conversations with other clinicians and their own consideration are:
Will this intervention actually help me pursue my goal?
What will pursuing this goal actually look like in my day-to-day life?
What are the trade-offs? What’s the best, worst, and most likely case?
How will I know when interventions designed to help pursue this goal aren’t working?
If I become sicker, what will it look like to keep pursuing this goal?
Would there come a time when I’d prioritize another goal more highly?
I know we want all or at least some of each goal, especially since so much in life requires a bit of each. The fact is, serious illness forces trade-offs. We can work on all three of these goals while acknowledging priorities and limits. We can seek to understand what our patients are willing to trade-off. As someone weakens and nears the end of their life, the limits, particularly for longevity and function, draw nearer too. Interventions designed to help pursue those goals may only harm. That’s hard for folks to accept when medicine promises so much.
One thing that I think meshes really well with the way I’ve framed the goals of care is the journey metaphor.3 Metaphors rely on our knowledge about one thing to build understanding about another thing. We use them all the time. Metaphors are flexible and summon worlds of meaning. To say, “She’s a ray of sunshine,” might mean someone’s a joy to have around, but not everything about light applies, so she probably doesn’t move at the speed of light. To say, “He’s a fighter” pulls in all kinds of intonations about enemies, struggles, wars, winners and losers, etc. There’s a lot packed in there, and both the speaker and listener probably don’t consciously acknowledge it all. That means metaphors can be unwieldy, as the meaning received may mismatch the meaning intended.
You can see how I already began using the journey metaphor as I described myself as a companion joining the patient and their family. This metaphor helps me see that their commitment to one kind of journey - prioritizing their healthcare goals a certain way - doesn’t mean they can’t change their mind. They can try to find another path. However, the language of journey suggests that they’ll head in one direction for a while and it’s going to take work. For those who do change their mind, the process that causes them to take a new journey (and choose a different goal for their healthcare) is complex. Shifting from one kind of journey to another might take longer than someone has to live, and that’s okay. My job isn’t to force people to make a decision; their disease usually does that. My job is to accompany them in the best ways I know how, even if we’re wandering in the wilderness for a while.
I hope the framework here can provide a solid handle to help grapple with how one might one use healthcare, whether you’re a patient or clinician. Talking about this is hard, and you’ll probably revisit this conversation. That’s okay. That’s in part because we’re pretty poor at “affective forecasting,” or predicting how we’d feel in some future circumstance. We don’t really know what we can live with until we’re actually living with it, and so decisions made earlier may need to be revised as new things develop. Reassessing the goals of care doesn’t mean I’m badgering patients to change their mind but I do want to make sure we’re using their healthcare in ways that are the most helpful given that serious illness too often moves and hides the target.
The work’s still hard. Suffering is tragic. I’m not downplaying any of that. But I hope this can at least help us better understand what we aim to do as we become hospitable companions with our patients and their families in this often elusive search for health.
I appreciate a review of a previous draft of this essay by Drs. Brittany Gatta and Paul Riordan.
Larkin G., et al. Pre-resuscitation factors associated with mortality in 49,130 cases of in-hospital cardiac arrest: a report from the National Registry for Cardiopulmonary Resuscitation. Resuscitation 2010;81:302-11.
Wright A., et al. Associations between palliative chemotherapy and adult cancer patients' end of life care and place of death: prospective cohort study. BMJ 2014;348:g1219.
Pacetti P., et al. Chemotherapy in the last 30 days of life of advanced cancer patients. Support Care Cancer 2015;23:3277-80.
Even for those who lack families and any meaningful, intimate community, society stands ready, through its imperfect commitment in healthcare, to help someone bear these burdens. It won’t replace a family, but the idea of burden-bearing is similar.
There’s risk in introducing a metaphor into a clinical conversation, instead of relying on those supplied by the patient and their family. It’s a topic for another time, but suffice it to say, I’ve found the journey metaphor to be fairly benign, whereas if I were to introduce the war metaphor (e.g., “We’re going to fight this disease”), I might unwittingly inject the possibility into my patient’s ruminations that fighting entails the possibility of losing, and so their only option is to fight to win.
Trajectories
Following a meandering reading-path, sharing some brief commentary along the way.
Aducanu-rama! “Aducanumab for the treatment of Alzheimers” and “Revisiting FDA Approval of Aducanumab” and “An Appropriate Use of Accelerated Approval - Aducanumab for Alzheimer's Disease”
Conversations about this drug and its approval process will continue for years to come. The podcast here is a good perspective on the data, the approval process, as well as the utility of surrogate markers in clinical trials and practice. NEJM published this pairing of an indictment of FDA’s reliance on (what they argue is) a faulty surrogate measure, whereas others provide a defense. A major learning point for those reading any medical literature: is this trial using a surrogate end-point? If so, is it actually linked with any meaningful outcome (e.g., survival, symptoms)?
“Avoiding stupidity is easier than seeking brilliance”
A short read discussing the concept of the “winner’s game” and “loser’s game” from tennis and how it applies elsewhere in life. Of course we’re supposed to be the experts in medicine, but there may be areas in our practice where we’re more or less competent. If you know your limits, you’ll know where it might be best to just avoid being stupid.
A helpful framework for critically appraising ethics literature, similar to how you might critically appraise medical literature.
“Vaccine mandates are lawful, effective and based on rock-solid science”
A bird’s eye view of an argument in favor of vaccine mandates, specifically pertaining to the recent discussions around COVID-19 vaccination mandates, but drawing on experiences from other mandatory vaccinations. This is not a new thing. Perhaps what’s new is the speed with which we’ve moved from the discovery of the vaccine to mandate, but the only salient concern there is one of safety. The vaccine may have adverse effects, but it’s safer than COVID and imbues substantial benefit.
“Clinician conceptualization of the benefits of treatments for individual patients”
These authors chose a handful of conditions from atrial fibrillation to osteoporosis and looked at how primary care clinicians (mostly physicians) estimated the benefit of treatment. It turns out the clinicians surveyed way, way over-estimated the benefits. This may be related to an over-reliance on relative risk reduction instead of absolute risk reduction, the former usually being a bigger number suggesting (wrongly) that the treatment has a bigger effect. I think also, as we see everywhere in healthcare, it feels better and is perceived as providing better care when you do something compared with when you withhold something, even if withholding is the clinically indicated course of action.
Physicians have peculiar power, which these authors describe as Aesculapian authority. This is the capacity to wield special knowledge, to define what is good, and to hold a revered position in society. A physician, for example, defied Hitler without repercussion because Hitler implicitly deferred to this Aesculapian authority. However, reluctance among patients to just “follow doctor’s orders” and get a flu shot (let alone a vaccine against COVID-19) suggests this authority might be eroding. Whether that’s a good thing (following after Ivan Illich’s concerns about iatrogenesis) or a bad thing (dangerously following after a growing suspicion, if not disdain, for expertise and institutions) remains to be seen.
Chris Feudtner, a pediatric pallaitive care doc, writes on the multiple manifestations of hope and the process of hoping itself. He provides a helpful reframing of what it means to hope and what changing hope looks like amidst serious illness. On the heels of mentioning “Aesculapian authority,” I read with some suspicion Feudtner’s mention of the “appropriate management of hopes” (in his contrast to the manipulation of hope). Implicit in Feudtner’s observation is that clinicians have the power to “manage” others’ hopes. I’m not denying that clinicians have a role in supporting patients’ process of hoping in some way, but I don’t think anyone else in the world except for a physician could say they “manage someone’s hope.”
For older adults who have comorbid dementia and depression, you may want to avoid starting an antidepressant to limit polypharmacy and its incumbent harms. It’s good to know that you can address these depressive symptoms and you can do it using things that aren’t overt psychotherapy (e.g., massage, exercise, cognitive stimulation, social stimulation).
“Characteristics of Cancer-Related Fatigue and Concomitant Sleep Disturbance in Cancer Patients”
Spoiler: sleep apnea is common in this sample. Anecdotally, I’ve uncovered more obstructive sleep apnea in my palliative care clinic in folks who have struggled with “insomnia” for years than I have in any other setting in which I’ve worked. All the more germane since the patients I care for are often prescribed opioids, benzodiazepines, and other medications that can exacerbate their sleep apnea.
“Three Kinds of Decision-Making Capacity for Refusing Medical Interventions“
Assessment of a patient’s capacity to make medical decisions can be fraught with ethical, legal, and clinical peril. These authors propose that, in addition to the traditional method of demonstrating this capacity, there are two other ways in which a patient might decline a medical intervention: a burdens-based refusal and a goals-based refusal. Their frameworks are intriguing, and, while probably not legally binding, help to orient us to how we might incorporate a patient’s perspective (which does have its own moral weight, regardless of rationality) into the overall decision-making process along with their surrogate decision-maker.
“Personal experiences bridge moral and political divides better than facts”
A fascinating collection of studies that demonstrate people are more likely to believe and respect those who support their stances on various issues with personal experience rather than facts. This holds true even for scientists sharing their own research! We can’t extrapolate these data to infer things about how patients receive information from their clinicians, but it may help to explain some of the COVID culture confusion: even as clinicians share their own personal stories of harm, other people (perhaps closer to the relevant communities) share their own stories with opposite conclusions. Facts are flung about with, apparently, little effect.
Vaccine hesitancy, in America and abroad, is a big problem, but educational programs and clever PSAs won’t overcome this: “If then knowledge is ‘justified true belief,’ as many philosophers have it, what justification would people in Zambia have, as one of my friends there recently asked me, to trust the pro-vaccine pronouncements of the BBC, CNN, and Al-Jazeera? These powerful media corporations are part and parcel of a global capitalist system founded upon the often-times murderous racialization, exploitation, and dispossession that disproportionally falls upon Black and Brown bodies, especially in Africa.” We need trust, and trust takes time to build. It also requires long conversations about what’s good, what health is, and what healthcare is for.
“Trial of pimavanserin for dementia-related psychosis”
Using the lesser known randomized discontinuation trial design (to reduce exposure to placebo and assess for utility of continuing vs discontinuing medication after demonstration of effectiveness), these authors show that pimavanserin is a promising choice for this indication in a group of patients with various sub-types of dementia. A few caveats: this trial doesn’t tell us whether it’s a good idea to start pimavanserin in any given patient with dementia-related psychosis. Also, it’s hard to draw conclusions about certain types of dementia (e.g., FTD) given the low numbers of patients with those sub-types. Where this might influence my practice: if I have a patient already taking pimavanserin but I’m worried about polypharmacy or some (apparently minor) adverse effect, I’ll be more inclined to continue the medication, as this trial suggests a relapse may be in the patient’s future if we discontinue it.