Can We Talk?

Roz Chast first published Can't We Talk About Something More Pleasant? in May of 2014. I thought it was one of the most honest, trenchant, and poignant descriptions of the last phase of life I'd seen. It's funny; it's sad; it's insightful. And it has much to teach caregivers. In honor of the imminent release of the paperback version, I had the opportunity to ask the author a few questions, which I'm posting here together with her responses. I'm including half the answers this week and the remainder will be posted next week.

MG: Your parents died in 2007 and 2009, but it looks as though you finished your book in 2014. Were you working on it all that time, creating the cartoons and the accompanying text, in which you capture your mother’s emotions, your father’s emotions, and your emotions, so beautifully—guilt, denial, affection, exasperation—or did you only start working on it years after their deaths? What made you decide to do this book, which is sometimes painfully honest and not the most flattering portrait of an aging couple?

RC: I wanted to remember my parents. I wanted to remember who they were—what they sounded like, the kinds of things they talked about. What they ate, what they argued about, how they looked… I have a kind of horror of forgetting things, and for me, writing and drawing about something is a way of remembering.

MG: In your book, there’s no mention of any doctor ever trying to engage your parents in a discussion of their wishes, not until years later when your father was 95 and hospitalized with a hip fracture and a DNR order was finally written. To the best of your knowledge, in the years between the beginning of the end (2001) and their respective ends (2007 and 2009), did any doctor ever try to bring this up? What do you make of this?

RC: As far as I know, no doctor brought this up. But I didn’t go with them to their doctor appointments until the very end, so I don’t know.

MG: One of my favorite cartoons in the book is the “Wheel of Doom.” The roulette ball could land on “death,” “deafness,” or “blindness then death,” to name a few. And then there are the “cautionary tales from [your] childhood,” truly implausible possibilities such as “killed by a baseball.”

RC: That is a completely true story. It was the son of my parents’ friends. His name, as I recall, was Ricky Laska. The  others were also stories I’d heard growing up: flower pot falling on guy, oboe, sitting on ground. ..Just thought I’d mention that.

MG: You present this as a way of showing that for your parents, all these outcomes are equally bad, a perspective that must have driven you crazy. But what it made me wonder was whether part of the problem with advance care planning as physicians conceive of it is that we tend to get too specific. We talk about “coma” and “persistent vegetative state” and “kidney failure,” which for normal people must sound much like your wheel of doom. Now your mother did say that she wouldn’t want to be a “pulsating piece of protoplasm.” Do you think your parents would have responded if their doctor had said, “So if you are ever a pulsating piece of protoplasm, we would not try to keep you going, but instead would try to keep you comfortable. But there’s a lot between the way you are now and a pulsating piece of protoplasm. If you couldn’t do anything for yourself—you couldn’t dress yourself, or get to the bathroom, or feed yourself—should we also focus mainly on comfort?”

RC: I think it’s so individual, when that border is crossed. And it’s possible that it changes. I.e., I remember when age 60 seemed impossibly old. Now, not so much. ;-)

MG: Speaking of states in between functioning—sort of—and being a pulsating piece of protoplasm, you do a terrific service by dwelling so much on what I call the in-between state, on frailty and decline, not just on death. For much of the time between your first visit to Brooklyn in 2001 and your mother’s death in 2009, she was frail. Your father spent over 5 years in this state of progressive dependence and disability. Do you have other thoughts about what would be useful to adult children when their parents are in that period of gradual decline?

RC: Get an elder lawyer to help your parents sort out stuff, to get a current will, to learn what “power of attorney” and “health care proxy” means, etc. And if you’re the person in charge, keep a notebook where you write down  all of the info you’ll have to keep track of: what drugs your parents are on, the dosages, their doctors, their doctors’ phone numbers, their pension plan information, the super and the super’s number, their neighbors and their numbers, bank info, your parents’ social security numbers… And if you’re in charge of hiring people to help take care of them, you’ll have to keep track of all of that too. Maybe to some people, this stuff is a big nothing. To me, it was very anxiety-producing.

The final part of this interview will be posted next week.

When Push Comes to Shove?

There’s been a lot of talk about advance care planning lately, with Ellen Goodman’s Conversation Project, Atul Gawande’s book, Being Mortal, and very recently, Angelo Volandes’ book, The Conversation. The message: think about what matters to you and discuss with your physician and with your family the approach to medical care that makes sense for you if you become very ill. We know that these kinds of discussions may not lead to the patient’s directive being followed when he or she actually does get very sick—sometimes the advance directive does not travel with the patient to the hospital, often the directive is difficult to interpret in practice (what exactly does “no heroic measures” mean?), and in some circumstances physicians or families override the directive. We know that patients with a medical order such as a POLST (Physician Orders for Life-Sustaining Treatment) are more likely to get what they signed up for than those with a wish statement (for example a living will). What we don’t know much about is whether patients change their minds when faced with an actual illness. A new study examines how often patients admitted to an ICU with some kind of “treatment limitation” in effect nonetheless received the treatment they previously had said they didn’t want.

The answer: about one-quarter of the time.The most common treatment that people specifically said on admission to the hospital they didn’t want was attempted CPR (accounting for 77.4% of the limitations expressed), but 24.6% of them ended up having CPR initiated. Another 21.3% of people said they didn’t want specific therapies such as dialysis or artificial nutrition, but it is not clear from the study just what proportion of them received those treatments. Finally, 3.9% of those admitted said they wanted a focus on comfort. We don’t know what kind of treatment those patients in particular received. All we know is that of the 13,405 patients admitted to one of 141 ICUs at 105 US hospitals between 2001 and 2008 with some kind of treatment limitation request in place, 3123 ended up getting attempted CPR, 3841 got intravenous medicines to maintain their blood pressure, 2660 were put on breathing machines, and 283 got dialysis. Finally, we know that there was considerable variability between hospitals, both with respect to the rate of treatment limitation expressed initially (from 1% to 30%) and to the rate of treatment limitation reversal (2% to 76%). So what does this all this mean?

Since we don’t know what led to the changes that occurred, we can’t know for sure. What is clear that these were not cases where the doctors simply never saw the advance directive. These are all cases in which the plan was not to provide a specific treatment (principally CPR) but the reality was that the order was rescinded and the forbidden treatment was actually administered. So somewhere between entering the ICU and leaving it (whether alive or dead), a major change took place. It could be that when push came to shove, patients changed their minds. When confronted with their own mortality, they chose to have a shot, however small, at living longer. It could be that most of the patients were incapacitated by illness and the actual decision to reverse course was made by a health care proxy or family member—we know from other studies that fully 70% of patients in whom a decision about life-sustaining treatment needs to be made are cognitively unable to engage in decision-making at the crucial moment. It might be that the limitation-of-treatment directive didn’t really reflect the patient’s goals—perhaps what they meant was they didn’t want to spend their life as a vegetable, not that they didn’t want a trial of life-prolonging treatment—and they came to understand that their directive as written should be revised.  Or it could be that patients and families were persuaded to change course because the environment of the ICU promotes life-prolonging treatment and it is very difficult to stick to a plan of care that violates the raison d'etre of the ICU. 

In all likelihood, the answer is all of the above. This study does not imply we should abandon advance care planning. It’s worth pointing out that 75% of patients with treatment limitations in place retained those restrictions. But it does raise questions about whether patients really know what they are signing when they complete an advance directive—whether a traditional living will, a detailed instructional directive, or a POLST form. It makes me even more convinced than ever that we need to focus more strongly on ascertaining the patient’s goals of care when we engage in advance care planning, and leave the translation of those goals into medical treatment to the moment when an actual decision must be made. And it does remind us that hospital culture in general and ICU culture in particular are very powerful. When an institution is structured and staffed to provide life-sustaining care, then treating some patients without using life-sustaining care creates cognitive dissonance. If patients truly want a different approach to care, we should provide an alternative environment in which to deliver that care, either the home or an intermediate facility such as a skilled nursing facility.

Goals, Goals, and then What?

Last week’s New England Journal of Medicine asked readers to weigh in on who should initiate a conversation about goals of care with the patient described in a clinical vignette, a 59 year old woman with very advanced breast cancer. Should it be the primary care physician? The oncologist?  Or should it be a palliative care specialist? Three short pieces make the case for each perspective. But the reality is that it’s not who initiates the conversation about the goals of care that’s important; it’s what’s done with the information.

The primary care doctor might be the best person to start talking to the patient about “what is most important to her” if that physician has a longstanding relationship with her. The oncologist might be the best person to “elicit... values and goals” if he or she has the requisite communication skills. The palliative care physician might be the optimal choice if there are other issues to address, such as symptoms or social supports. Ideally, any of the three candidates could discuss with the patient what matters to her, given the realities of her disease and its likely trajectory.

What the three respondents leave out is the next crucial step: going from goals to decisions about treatment. The primary care advocate says that the physician should help the patient “match future care and treatment to her goals” but is principally concerned with recommending use of the POLST form (physician order for life sustaining treatment) as a means of documenting her wishes. She doesn't explain how wishes, expressed in terms of goals, are to be translated into actual medical orders. The palliative care advocate argues that the patient needs “help understanding what to expect and how to manage it” along with symptom control and emotional support, and is chiefly concerned with touting the importance of palliative care as a specialty. She says nothing about who or how anyone will infer from goals what the treatment should involve. The oncologist argues that the physician should provide information about prognosis and elicit the patient’s values and is mainly interested in assuring that the specialist physician not abdicate this responsibility. He alludes to the physician’s “judgment and advice,” but then states that the doctor's role is to to help the patient "understand her prognosis and options, articulate her values, and match her medical decisions to those values." Evidently the patient is supposed to make the leap from goals to treatment, though with the physician's advice.

What should the process of moving from goals to a plan of action look like? Figuring out what treatment plan is most consistent with a patient’s goals of care requires technical understanding of the treatment and its alternatives. Suppose the patient decides that focusing on comfort is most important to her; it is the physician (most plausibly the oncologist, in this scenario) who is in the best position to explain whether oral opioids, an infusion pump, or radiation therapy are most conducive to achieving that goal. Suppose the patient chooses to focus on life-prolongation. It is the physician who is best able to determine which, if any of the available chemotherapeutic regiments, is likely to prolong life. Or suppose the patient concludes that remaining as mobile, independent, and clear-headed as possible is her primary concern. It is the physician who is able to say, based on knowledge of the benefits as well as the burdens of each alternative, how best to accomplish this goal.

Shared decision-making, the gold standard of care today, involves the active participation of both clinicians and patients. It is a dynamic process that requires give and take by both parties. It demands skill, rests on trust, and takes time. But it’s important to realize that the physician and the patient bring different kinds of knowledge and expertise to the dialogue. A division of labor between patients and doctors is perfectly consistent with respect for both parties. Just as patients have a unique understanding of what matters to them, physicians have a special understanding of what it is like to go through a course of treatment. Physicians can help patients articulate their goals but then it is up to physicians to conclude what those goals imply for treatment. Patients may reject the conclusions drawn by physicians—usually because they realize, when faced with the implication of their stated goals, that their description of what was important to them was not quite accurate. 

The translation of goals of care into actual therapy should be the physician’s prerogative--with the patient maintaining veto power. What matters isn’t so much who starts the ball rolling as how to shepherd it into the end zone.

Is the ICU Good for Your Health?

Your goals of care determine what kind of medical treatment makes sense for you—or they should. If you want any treatment, however painful or debilitating, as long as it has a reasonable prospect of prolonging your life, then you would accept high risk surgery or attempted CPR. If you want treatment that offers a good possibility of making your daily life better by helping you with every day activities such as seeing or walking or hearing, then you’d be all for cataract surgery or a hip replacement or a hearing aid. And if you want treatment provided that it makes you more comfortable, by helping you breathe more easily or diminishing nausea or lessening pain, then you’d opt for oxygen, anti-emetics, or opioid medications, depending on your symptoms. The challenge for patients and doctors has been figuring out what kinds of medical treatment don’t make sense, given your goals, because they are unlikely to produce the effect you want—and may even produce the opposite effect. A new article in JAMA Internal Medicine helps clarify when one particular treatment, ICU care, is apt to achieve various discrete goals of medical care.

The authors of this important new study wanted to know what happens to older people after an ICU stay. They wanted to know not only whether they would survive, but also what their lives would be like in the months following ICU treatment. They also wanted to know how the person’s level of functioning before the hospitalization would affect what happened after the hospitalization.

This remarkable study involved prospectively following individuals over the age of 70 who, at the time of enrollment, were non-disabled in four basic activities of daily living. A total of 754 people were followed with home assessments at baseline and every year and a half from 1998 through 2012. When patients or their surrogates reported a hospitalization, the details of that stay were gleaned from medical record review and from claims data. 

Of the 754 patients followed, 291 (or just under 40%) at some point were admitted to an ICU, which in itself is impressive. For the 241 who lived to be discharged (17% died in the hospital), the researchers found 3 distinct trajectories. Fully half (51.1%) experienced severe disability over the year after discharge; slightly over one-quarter (28.1%) had mild to moderate disability; and just over one-fifth (20.8%) had minimal disability. Most of the patients (except the 7% who died during the first 30 days after discharge) got slightly better in the first three months after leaving the hospital—that is, they experienced fewer disabilities than at the time of discharge—but in all 3 groups, the level of disability stabilized after 3 months rather than continuing to improve.

How well people did after an ICU stay was closely related to how well they were functioning before the hospitalization. Not surprisingly, those with severe disability before the acute illness (77 people) had severe disability afterwards as well, and one-third of them died. Among those who had mild to moderate disability before the hospitalization (128 people) , 32% had roughly the same level of disability afterwards, 40% had severe disability, and 26% died. Finally, among those who had only minimal disability before the ICU stay (86 people), half still had minimal disability afterwards, about one quarter had mild to moderate disability, and the remaining quarter were evenly distributed between those who died and those who had developed severe disability.

How does this study help align treatment with the patient’s goals? For older people whose primary goal is comfort, ICU care is not likely to help. Patients in the ICU were placed on ventilators (30%) and underwent all the other invasive treatments commonly associate with the ICU. For older individuals whose primary goal is maximizing function, ICU care is likely to lead to a deterioration of function, unless the patient was already suffering from severe disability (though even these individuals tended to have a larger number of disabilities after the hospitalization than before). Decline in function is particularly striking for those who started out with mild to moderate disability. And for older patients whose primary goal is life-prolongation, ICU care made most sense for those whose baseline status involved minimal disability—81% of such patients survived a year, compared to 56% of those with mild to moderate disability at baseline and only 33% of those with underlying severe disability.

The ICU is a remarkable institution. It represents the pinnacle of American high-tech care. But it comes at a price, even when it succeeds in prolonging life. That price is greater disability, which may or may not be acceptable to older patients. It all depends on your goals of care.