Beyond Asking: Building the Goals of Care
Notes from a Family Meeting, Vol. 2, No. 3
This is a follow-up on my earlier piece on the goals of care. Check it out if you haven’t already. I hope that framework supports patients and their families in complex medical decision-making by clarifying that serious illness forces prioritization of objective healthcare goals, by highlighting that trade-offs are inevitable in pursuing those goals in the midst of frailty or serious illness, and by providing a concrete basis for clinical recommendations. It also helps to narrow a seemingly endless list of goals (e.g., go on vacation, see that graduation, mow the lawn, avoid pain, etc.) into three big goals that correlate to actual medical interventions.
I covered some questions patients might ask themselves and their clinicians to help manage the tension among the various goals, but I didn’t address how you might go about eliciting someone’s goals apart from asking, “Given everything you know about what’s going on with your health, what do you want to work hard to pursue?” Most people haven’t explicitly considered it or, if they have, they haven’t yet reflected on how the changing landscape of their health will influence their default choice. You’ll need to do a little more work to figure it out.
Medicine is the imperfect craft we use to traverse the dangerous and foreign territory of illness. Because it’s imperfect, patients need to discern where they want to aim medicine’s efforts in restoring health as its use will come with trade-offs. Clinicians, being experts in medical interventions, need to help their patients understand how to align their healthcare (using the goals of longevity, function, and comfort) with those things that are most important to them. This isn’t like filling out an advance directive form. Rather, it’s a creative, ongoing process that exists between the healthcare team (in reality, one or two trusted clinicians, with other consultants providing technical support) and the patient and their family. This means that, while I’ll discuss some ways of eliciting the goals of care, the process will pull more of the clinician into the clinical encounter than their mere technique.
Pillars and Pitfalls
So, before we get into those ways you might go about this task, it’s helpful to set some foundational pillars in place.
Cultivate conversation. You’ll need to weave these approaches together into a coherent conversation, rather than employ them in an algorithmic checklist. Don’t be a robot. You’re helping the patient and their family write this next chapter of their life, not fill out some tax forms.
Be curious. Without curiosity, compassion will wither. Without compassion, you won’t be able to care well for people even if you’re a rockstar in your techniques. Curiosity is also a key component of the intuition necessary to know when to say or do certain things. Cultivating curiosity isn’t easy in a harried, utilitarian environment, all the more so because it must be the right curiosity: not the curiosity that sees a patient as an interesting manifestation of a textbook chapter or laboratory experiment, but as an earnest desire to know this person and wonder how you might achieve their good. Wonderment before their dignity is a good first step toward wondering about them that enables you to ask the right questions.
Recognize that medical decisions are shared between clinicians and patients (and their families). Shared decision-making is commonly described as two parties meeting together, each bringing a piece of the puzzle to allow a decision to be made. Patients bring their goals, preferences, and values, and clinicians bring their expertise. But the process is far more creative than that, as patients need to articulate things they may have never have before considered, and clinicians need to make unique leaps from population-level medical evidence to the individual patient before them. Therefore, we should consider shared decision-making more broadly: the decision is owned by everyone involved, although the patient has the final authority to approve or decline a course of action (it’s their body, after all, and they’re in the best situation to discern whether that intervention will serve them well). Some patients may be clearer and more situated in their goals than others, but the clinician and patient still need to work together to figure out how this works now, in this context, with this degree of health and illness.
Ask permission. Can I say this enough? “Is it okay if we back up and talk about the big picture?” “Is it okay if I share how the current plan might play out?” Whenever you sense you’re changing the topic in a sensitive way, ask permission. It’s possible to over-do it (“Is it okay if I ask about your breathing now? …about your appetite now?”), but in general, I’ve seen clinicians err too far in barging ahead. When you don’t ask permission, you may waste your time. You’ve probably heard someone recount, “The doctor said ‘You have cancer’ and then all I heard was blah-blah-blah after that.” Asking permission ensures you’re moving at a pace the patient and family can tolerate and in a direction they want to go.
In addition to that foundation, we should know what not to do:
Don’t assume. Everyone has different hopes, worries, plans, and a different baseline. Saying it makes it seem obvious, but too often clinicians assume they know the patient’s goals of care or what the patient is willing to trade-off in pursuit of a certain goal. They assume a hasty conversation over an informed consent form actually helps the patient make an informed decision. They assume a discussion about code status is a discussion about goals of care. They assume something would be acceptable (or not) to a patient. Curiosity is a good way to avoid assumption traps.
Don’t write it down in stone. Framing one’s experience in healthcare as a journey implies that as you prioritize one goal over others, you’re going to move in one direction for a while. While that requires work and commitment, it doesn’t mean you can’t change paths later. It does mean that the process by which you come to choose another path may take longer than you have to live, so clinicians should have patience with the process. This also means there’s a great deal of ambivalence in decision-making, even if a patient makes a decision to move in a particular direction. I’ll get to the ambivalence in greater detail below.
Don’t ask what they want. This seems counter-intuitive. Aren’t we trying to understand what the patient wants? As Dr. Nakagawa rightly observes, we can’t properly frame choices until we understand the goal someone wants to achieve. A patient may want more chemotherapy but that’s a moot point because there’s none left. They may want a treatment for a reason that treatment won’t accomplish. Jumping to specific choices before understanding goals also exacerbates entrenchment when there’s conflict. Channeling Roger Fisher and William Ury, we should shift the focus from negotiating based on positions (e.g., on a particular procedure, code status, disposition) to negotiating based on interests (e.g., the goals of care). Building bridges from a goal to what’s possible requires creativity, not a selection from a menu of options.
Don’t ignore the surrogate decision-maker. Usually this person is a loved one and more than a mere surrogate decision-maker or caregiver. We run into trouble when we’ve had discussions about goals of care with an individual patient, they lose their capacity to make important decisions, and the surrogate decision-maker was kept in the dark until that eleventh hour. This can be devastating for the surrogate decision-maker and may also inhibit the whole decision-making process as they need to be caught up and reckon with the fallout of their ignorance. What happens then is a new creative process with this person who wasn’t involved in this first iteration. It may not always be possible to include this person in every conversation while the patient still has the capacity to make these decisions, but at least try do it for some of the bigger ones.
Death is neither a medical instrument nor a goal of care. For some, this is controversial, and I’ll eventually share a more robust explanation of my reasoning for this view. For now, I need to be brief. Many patients say they want to die. They may even overtly request euthanasia or assisted suicide (whether it’s legal or not). I explore what drives this desire, but I don’t shape conversations to imply that we should do things to intend someone’s death. If a life-sustaining therapy is withheld or withdrawn, for example, it’s because the burdens of that therapy outweigh any benefits in pursuit of a prioritized goal of care. I don’t do it because the patient is “ready to die now,” although it may be true they feel that way. There’s much more to be said here, but for now: I don’t recognize death as a medical instrument nor as a goal of medical care, and I don’t think you should either.
Figuring Out the Goals of Care
Okay, how do I go about to eliciting someone’s goals of care? I might do all or some or just one of these:
Just ask. Use the question I posed above or some variation (“Given everything you know about what’s going on with your health, what do you want to work hard to pursue?”). This is a good screening question to discern how much thought someone has given to all this, and how much collaboration might be required from you in helping them discern their goals of care. You should explain what the objective goals of care are first, as this question, without that mooring, pulls for specific treatment preferences that may or may not be possible or relevant (e.g., “I want that surgery” when a surgery won’t actually be possible or helpful).
Listen for the things that matter. As I wrote previously, medicine intervenes to restore or sustain health in three big ways: longevity, function, and comfort. Those three things don’t exhaust what health is, though. However, listening for big things that matter can help lead you into some helpful ways to frame questions and statements about what someone’s health means to them. These are things like family, freedom, religion, work, creativity, food, physical and emotional intimacy, honor, and so on. They’re sometimes couched in metaphors or stories and the concepts need to be inferred (e.g., “It sounds like your work means a lot to you.”). They’re also highlighted by affect; if someone looks like they’re bored or distracted, then the content of what they’re saying probably isn’t very important to them (assuming they’re not delirious or depressed). How the goals of medicine intersect with these existential issues of real life is a matter to work out between clinicians and their patients.
Hypothesize about limits and trade-offs. “What if your health got to the point that you couldn’t return home?” “What if this treatment worsened your diarrhea?” “What if the doses of medications we needed to use to control your pain also made you too sleepy to talk with your family?” These hypothetical situations need to be tailored to specific patient needs. At the outset of a serious illness, the future may be so uncertain and the number of hypothetical scenarios so numerous that this approach is less helpful. It’s more helpful when facing particular decisions and pairs well with the best case/worst case scenario planner.
Play it out. Some patients feel overwhelmed by repeated questioning, particularly around big, existential matters. It can feel nagging and intrusive. Patients in the hospital may have a blur of white coats and scrubs asking them dozens of questions every day. While it’s probably less intense in the clinic, they still may not know the answers to all your hypothetical questions. You might get more mileage out of simply describing where you imagine the patient’s current trajectory will land them. You can rely on their behaviors as so-called “revealed preferences.” Maybe even if they don’t express their preferences, we can infer them from their behavior. Because people may act without intention or at least much forethought, this exercise might also help the person to better understand their rationale in behaving a certain way. This is best used when keeping an ear out for what may be impairing their participation in more explicit discussion about their goals of care, or why their behavior might not align well with their explicitly stated goal of care. For example, someone might say they want to work hard to live as long as possible but they also frequently skip dialysis. It’s critical to discern why they skip dialysis (e.g., symptoms peri-session, schedule constraints, transportation, etc). It can also be helpful to play out the trajectory of their behavior to further discern if their non-adherence to dialysis is actually an inchoate desire to pursue a different goal. Revealing a comfort-focused path that doesn’t include dialysis might help them realize that’s what they really want. Beware of making their current trajectory (and thus their behavior and implicit decision-making) sound absurd. That’s a risk when you personally don’t agree with the decision to venture down a certain path.
Run a time-limited trial (TLT). This is an under-utilized tool and it’s great for approaching uncertainty and ambivalence in decision-making. This allows patients to “play it out” for real rather than hypothetically. Briefly: set the timeline, define the intervention(s), and define the objective criteria for success or failure of the trial. All that can be summarized in the nifty mnemonic TIME. The timeline needs to be realistic and the criteria need to be objective and agreed upon by the patient, family, and clinicians. The TLT gives the space, emotionally, cognitively, and physically, for patients and families to try pursuing a particular goal for a time and weigh that in their deliberations.
Telescope the timeline. Usually when we talk about goals of care, we mean some kind of monolithic guide for all care from that point forward. However, sometimes we need to prioritize one goal for a period of time with a plan to shift focus afterward. For example, someone might need to have their symptoms urgently addressed before they can engage in any conversation about this at all. The prioritized goal in that moment is comfort which may change to longevity after further deliberation. Alternatively, a TLT focusing on longevity may allow for acceptance of a comfort-focused plan of care if the trial fails. This flexibility and creativity fosters an atmosphere of open communication where the goals of care can be further revised and clarified.
For surrogates, bring the patient into the room. Too often, once we discern a patient has lost the capacity to make an important medical decision, we exclude them from further deliberations about the decision. From a legal and ethical standpoint, the binary nature of capacity assessments is important: folks either have the capacity to make a decision or they don’t. However, practically, it’s better to understand that the capacity to participate in the process exists on a spectrum. Someone might not have the legal authority to make a decision but they can still make their preferences known, which can be immensely helpful for a surrogate decision-maker even if the patient never had capacity in the first place (e.g., children, intellectual disability). Even if we’ve lost the patient’s voice entirely, you can ask questions like, “What would [the patient] say about all this that’s going on here?” As above, I try to avoid asking, “What would [the patient] want?” It’s a variation of “what do you want” that’s unhelpful because the patient didn’t know all the facts that the surrogate now knows.
Ambivalence
So you’ve navigated your way through this conversation. You’ve connected, inquired, reflected, and inferred. But still your patient is racked with ambivalence. They’re pulled in too many directions. They struggle to decide. And who wouldn’t? I also want all of longevity, function, and comfort. So much in life requires them all. How can you weigh these things against one another?
Clinicians seem most commonly to respond to ambivalence in one of two ways. They either leave the patient alone to mull it over (often, though not always, a wise decision) or they provide more information (rarely the answer at this point in the conversation). Bryanna Moore and colleagues very helpfully exploded this idea of ambivalence into nine ambivalence-related mental states: uninformedness, evolution, indecisiveness, vacillation-general, vacillation-conflict avoidance, vacillation-contrarian, apathy, indifference, and “true” ambivalence. In addition to these cited in the paper, I’d add mental illness, which can masquerade as one of these states. They only briefly discuss this and it can include anything from severe depression to dementia to delirium.
Some of these appear very similar. Take, for example, apathy, indifference, and “true” ambivalence. Apathetic patients have no preference and will decline to engage in the process of decision-making; they don’t care. Those who are indifferent engage in the process of decision-making and prefer the options equally; they’re satisfied no matter what’s chosen. A truly ambivalent patient wants everything; they want what’s usually impossible.
Just as important as knowing what mental state your patient might be inhabiting is knowing how to respond. The authors suggest ways one might approach these different mental states. If you respond to evolution (working through the options, deliberating, conferring with others) with more information because you think the delay in decision-making is due to uninformedness, then you’ll likely just annoy the patient. Someone who’s in evolution may need a deadline, though.
Some of these mental states reveal a deep, perhaps unreflective, conflict in one’s values. Ambivalence in particular shows how difficult it is to weigh good things against one another. It may be a landmark indicating that one needs to now engage in some existential work posed by the decision at hand. Amelie Rorty describes moving from unreflective ambivalence to appropriate ambivalence to responsible ambivalence to constructive ambivalence to epistemically responsible ambivalence. She goes into greater detail but the main idea is that “resolving” ambivalence is a far more arduous task than merely making a radical choice, flipping a coin, or gathering more information. Such resolution requires collaborative creativity. Because clinicians play a major role in helping patients and their families through major medical decisions, we aren't neutral. We can't be. Many palliative care clinicians say we “clarify” the patient’s goals of care, as if they exist prior to our interaction with them. It’s possible they might, but unlikely. Even if they do in an inchoate form, it’s unlikely someone has deeply reflected on how their values inform a decision about their health in this moment, with all its incumbent trade-offs.
That doesn't mean we wrest a decision from the patient that we think is best. It does mean, though, that “clarification” may be the wrong term to use when we describe what we do in discussions about the goals of care. Instead, we creatively construct how we see and appreciate things together. I’m humbled repeatedly before the complexity of the decision-making process. That helps to sustain my flexibility in accepting inevitable bumps in the road as my patients, their families, and I seek their goals of care, sometimes over a conversation and sometimes over the course of months.
Trajectories
Following a meandering reading-path, sharing some brief commentary along the way.
“Trust, Partisanship, and Medical Science with Yuval Levin”
Aaron Rothstein and Yuval Levin discuss the challenge facing bioethics during the COVID era, reflecting on other times in recent history when medicine and society faced similar challenges. Levin cautioned against treating the human condition as a crisis, for when we do that, we turn life itself into an emergency where we suspend normal ethics.
We don’t live in a vacuum, as Margot Hedlin discovered as a hospitalist caring for cancer patients.
I’m struck by this reflection on rest from L.M. Sacasas and how it relates to burnout in healthcare. It also makes me think of how we use language in the clinical encounter. Palliative care in particular, in helping with complex medical decision making, risks turning the illness experience into a series of decisions. Certainly decisions are important, but there’s more to it than deciding on things. The techniques of helping patients make medical decisions (e.g., VitalTalk) risk transforming the illness experience into one that accommodates the technological dilemmas of modern medicine by way of a series of complex decisions. It’s funny Sacasas mentions robots, for I feel so many attempts at communication in healthcare wind up in an uncanny valley. That is one uncomfortable side effect of utilizing this technique to mold the illness experience into a map of medical decisions that clinicians can comprehend and manage.
“Recognizing a patient is acutely dying”
A helpful review, albeit editorialized, on how to diagnose and think about acute dying. His framework highlights the subjectivity, rather than objectivity, of dying. People may be dying when they receive a terminal diagnosis or when they’ve exhausted all life-sustaining therapies, depending on the setting where they’re receiving care. They may be dying when their body can no longer accept any physiologic support from therapies. They may be dying when they choose to avoid life-sustaining therapies. This designation of “dying” (acute or not) leaves unanswered the twin questions, what should you do when you’re dying, and what should others do for you? The implication of diagnosing dying in an ICU, for example, is that we should limit life-sustaining therapies, as they won’t work and may be harmful. But is the diagnosis of dying only useful in determining how much and in what ways we use medical technology?
Joseph Davis, a sociologist at UVA, argues that medicalization has turned everyday life into a series of pathologies. We come to see ourselves and others through the lens of medicine - we are reduced to mere biology and therefore all our problems call for medical interventions. While I might take issue with some of his observations (e.g., OCD is more than mere perfectionism), I share his concerns that, particularly in the realm of psychology and psychiatry, human life is far too easily medicalized, and we are the worse for it.
One of the more bedeviling things a clinician can tell their patient with cancer is, “If you get stronger, you can get more treatment.” I had been searching for evidence to support this recommendation for some time and finally, thanks to #MedTwitter, I finally found a single paper. Only about a third of patients referred to subacute rehab in this study actually went on to get more treatment for their cancer. Of those who did, 63% were dead within 180 days, and the median LOS on hospice for them was a measly seven days. Twenty-eight percent of those discharged were readmitted within 30 days, and only half of patients made it to oncology clinic before readmission or death. However, the median survival of the group receiving treatment was 259 days from date of discharge to rehab; 6-month survival was 75% in this group compared to 24% in the no therapy group. The question is, were those who received treatment after rehab just hardier folk with less aggressive disease, or did the rehab and treatment actually change their disease trajectory? This trial can’t tell us that. But it’s a start.
“CORE IM: Treatment Over Objection”
Treatment over objection in psychiatric contexts has a robust ethical, legal, and clinical literature supporting its practice. However, as discussed in the podcast, there’s less published about treatment over objection in medical contexts - e.g., forcing dialysis on someone with uremic encephalopathy. The approach to scenarios like these will vary from setting to setting, as cultures will also vary. Where I’ve practiced, most people wouldn’t bat an eye at restraining a delirious patient to keep them from tearing out their endotracheal tube and IVs that are providing life-saving medications. But Kenneth Prager, ethicist and PCCM doc, does offer a helpful heuristic of seven questions to help discern when treatment over objection is going to be not only ethically justified, but helpful. Sure, dialysis might get someone over the hump of uremic encephalopathy, but if they have advanced dementia with behavioral disturbances, chronic dialysis is logistically untenable and thus an impossible long-term solution. This is a helpful and brief podcast for any clinician who regularly cares for incapacitated patients.
“The desire for health and the promises of medicine”
Roberto Mordacci highlights that the experience of illness is more than pathophysiology. Illness has many levels, the deepest of which is a disruption of one’s capacity to freely discern meaning in one’s life and the closing of the possibility of a good future. If that’s the case, then modern medicine’s technological responses will fail to foster health insofar as they merely aim at the merely biological. However, there is a risk that Mordacci doesn’t address: that modern medicine, in attempt to cover all aspects of illness, becomes a totalizing force. Everything is measured, everything relates to health, everything falls under the purview of medical care. Ivan Illich and others try to wrest back control by identifying the harms of iatrogenesis and extolling the virtue of forms of non-institutionalized care, but given the victories (admittedly, some are Pyrrhic) of biomedical technologies, throwing off modern medicine is impossible. How do we move forward in caring well for others while not desiccating their lives of all meaning?
It’s no surprise that these authors find there’s no agreed upon definition of futility in this setting. They do reinforce the importance of clinical outcome scores (e.g., GO-FAR, PIHCA) in quantitatively assessing the likelihood of a good outcome after an in-hospital cardiac arrest. I rarely use the numbers provided by GO-FAR with patients (after all, patients can believe there’s 100% chance they’re in that 1%), but I do use it as a piece of the story I tell about the best case scenario: if they survive the cardiac arrest, you’re looking at a long road of recovery ahead, away from home, and with no guarantees that you won’t backslide into other health problems. Whether they want to work hard doing that, particularly if their time is already limited by something like advanced cancer needs to factor into how they make decisions on emergency plans like these.
“Clinical trials in medical center advertising”
Alex London and Jonathan Kimmelman argue that academic medical centers foster therapeutic misconception when they advertise their cancer trials as therapies, or mix therapeutic advertisements with the hope for trial enrollment. It reminds me of the “waiting for a miracle” conversation that often bedevils end of life conversations, particularly in the ICU. We forget that modern medicine fosters that hope in miracles, and is happy to do so until the clinicians lose faith before the patients do.
Parting Thoughts
The intrinsic promise of technology—that it will relieve uncertainty and lighten doubt—is virtually irresistible given the special circumstances of medical practice. However, despite the uncountable benefits of technology, uncertainty and doubt remain, although often shifted or concealed.
Eric Cassell, The Nature of Suffering and the Goals of Medicine