Making Decisions for a Loved One With Cancer, with Paul S. Appelbaum, MD, Allison Magnuson, DO, and Jonathan M. Marron, MD, MPH

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors who care for people with cancer. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so data described here may change as research progresses. In today’s podcast, Dr. Paul Appelbaum, Dr. Allison Magnuson, and Dr. Jonathan Marron, will discuss their article “Medical Decision-Making in Oncology for Patients Lacking Capacity,” from the 2020 ASCO Educational Book. They discuss what it means for someone to be unable to make significant medical decisions for themselves, known as “decisional capacity,” and offer practical tips for families and caregivers. Published annually, the Educational Book is a collection of articles written by ASCO Annual Meeting speakers and oncology experts. Each volume highlights the most compelling research and developments across the multidisciplinary fields of oncology. Dr. Paul Appelbaum is a psychiatrist at Columbia University Medical Center, where he researches decisional capacity and decision-making in medical contexts. Dr. Allison Magnuson is a geriatric oncologist at the University of Rochester, where she researches older adults with cancer and older adults with preexisting cognitive impairments. Dr. Jonathan Marron is a pediatric oncologist, bioethicist, and researcher at the Dana-Farber Cancer Institute and Boston Children's Hospital. View disclosures for Dr. Appelbaum, Dr. Magnuson, and Dr. Marron at Cancer.Net. Dr. Marron: Hi. We wanted to welcome you to this Cancer.Net podcast. Today we're going to discuss our article in the 2020 ASCO Educational Book which is entitled “Medical Decision-Making in Oncology for Patients Lacking Capacity.” What we hope to focus on today specifically is what this means for patients, for families, for caregivers, and provide some practical guidance not just for oncologists but for patients, families, and caregivers specifically. My name is Jonathan Marron. I am a pediatric oncologist, bioethicist, and researcher at the Dana-Farber Cancer Institute and Boston Children's Hospital. Dr. Appelbaum: And I'm Paul Appelbaum. I'm a psychiatrist at Columbia University Medical Center where I do research on, among other things, decisional capacity and decision making in medical contexts. Dr. Magnuson: And I'm Allison Magnuson. I'm a geriatric oncologist at the University of Rochester, and my research focuses in older adults with cancer and more specifically in older adults with preexisting cognitive impairments. Dr. Marron: We should point out that none of the 3 of us have any relevant conflicts to disclose. Dr. Applebaum, can you tell us a little bit about what capacity is and why it matters to patients and their families? Dr. Appelbaum: So capacity is both an ethical concept and a legal construct. And it refers to those decision-making abilities that we require people to have, in order to make decisions that are binding decisions, valid and worthy of respect by others. Over the years, this notion of decisional capacity has evolved in a more focused way. So it was once the case that people were considered to be capable of making all decisions or no decisions. And now we recognize that people may be capable of making some decisions but not others. Moreover, we recognize that this capacity taken as a whole can change over time. So if you're sick, in pain, anxious, or of course unconscious, you may lack capacity to make decisions at that point. But the following day, when you are feeling better, no longer in pain, or have consciousness, you'll be quite capable of doing it for yourself. And then we focus in on 4 components of capacity which is what we look to assess when somebody is concerned that a patient may lack capacity. We ask whether the person can understand the information that's relevant to the decision, can appreciate what that information means for their decision-making context, can reason about the decision in a more or less rational way, and can make a choice and decide whether or not they want a particular treatment or want to be hospitalized or desire a diagnostic procedure. So in a nutshell, that's what we mean by this thing that we call decisional capacity. Dr. Marron: And so you just mentioned there a couple of different types of decisions that an individual might have to make. Might capacity vary according to each individual decision? Dr. Appelbaum: Yeah. But capacity is usually thought of as task-specific. So that even within the domain of medical decisions, a very simple decision like should you have a flu shot, like I did last week, is probably not one that requires a great deal of capacity. Indeed, they didn't give me any hard time when I asked for a flu shot. But if you're making a decision that has potentially life-saving or life-changing consequences, whether to accept, for example, or reject potentially life-saving treatment, more capacity may be required. So it depends on the decision that's at hand. Dr. Marron: So it sounds like as it relates to decisions that an individual with cancer might face, or those who care for individuals with cancer, this could end up being a relatively challenging process. Dr. Magnuson, what are some of the aspects of cancer and cancer care that might affect an individual's ability to have capacity for these kinds of decisions? Dr. Magnuson: Sure. I think that's a great question. So as Dr. Appelbaum mentioned, certainly the complexity of the decision can come into play. We know that with cancer treatment, some of the treatments that we consider are high risk types of therapies, potentially high benefit but also high risk. And if patients have some type of preexisting cognitive impairment, perhaps some of those more complex decisions may be more challenging and require more support. There are also scenarios with a cancer diagnosis, for example brain metastases, that may impact capacity for certain patients as well. Dr. Marron: And then back to Dr. Applebaum. So if there's questions about whether or not an individual has capacity, what should patients and family members expect that their clinicians will do in order to assess that? Dr. Appelbaum: Yeah. I think it's important to say, first of all, that if family members believe that their loved ones may lack capacity, and sometimes they know much better than a doctor or any other member of the medical team who has just met the patient what their baseline functioning is and how different they may look and behave today, that if they suspect that that's something that they ought to communicate to the medical team. If that happens or if the team itself suspects that the person may have some impairment of their decision-making abilities, an assessment will take place. It can be performed by some member of the medical team itself or sometimes it will be done by a consultant. Typically, a consulting psychiatrist who's called in to see the patient and do the evaluation. Unlike blood tests for anemia, let's say, there's no definitive medical test that can be done to determine whether somebody is decisional and capable or not. The assessment is based on an interview. The interview typically will review what the patient understands about their condition and its nature, the treatment that's been proposed, the risks and benefits, and the alternatives along with their risks and benefits. It will assess whether the patient appreciates their own situation, that is recognizes the nature of their illness and its severity and what the likely consequences of either accepting treatment or refusing treatment might be. It will assess their ability to weigh the risks and benefits and come out with a decision. Typically, a decision that in some way reflects their assessment of those risks and benefits. That sort of interview can take 20 to 30 minutes. It's done at the bedside and the person doing it will integrate that information with information from the family if that's available with a review of the medical chart to see what other problems the person may be having or what variant behaviors or thoughts they may have manifested and will come up with a conclusion. What's important to underscore as we mentioned earlier is that conclusion is valid for that point in time. If the patient's condition changes, somebody who was competent yesterday may not be today and somebody who lacked that competence yesterday may have recovered it by today, and again if family members are aware of substantial changes in their loved one's condition, that's important to call to the team's attention as well. Dr. Marron: And that last point that you mention is particularly poignant in my area of practice in pediatrics, since children by definition legally don't have capacity. So we have to think about things in a little bit of a different fashion where typically the child's parents are the ones who are tasked with making decisions on behalf of the child. But we try to integrate the child's voice as best that we can and the age and developmentally appropriate way while understanding that until the age of majority, in most cases an individual doesn't have the legal ability to make a decision for themselves. That's not to say, however, that just because they can't make a legal decision doesn't mean that they shouldn't have a voice. In your practice, Dr. Magnuson, how do you try to approach patients that don't have capacity or have perhaps waxing and waning capacity? Dr. Magnuson: Yeah. It's interesting kind of hearing your pediatrics perspective. Because of the area of my interest, many of my patients do come to see me with a new cancer diagnosis and they have preexisting either mild cognitive impairment or dementia. And just as we've been talking about how the complexity of the decision at hand really is an important thing to consider. Often patients may retain the capacity for some of the more straightforward decisions but may need more involvement of caregivers, health care proxy, and such for the more complex, maybe treatment-focused decisions. Thinking through different options, cancer treatment options that have different risk profiles to them. Those are complex decisions and so often how I try to approach it is to really get a sense from patients, as Dr. Applebaum described, what is their understanding about their diagnosis? Some patients with advanced cognitive impairment may not recall that they have cancer even though they've been to several appointments prior to me where the diagnosis has been discussed. Those are more extreme cases certainly, but kind of getting that level of understanding using a lot of interview techniques in the office visit to gauge people's understanding of the different options that we're talking about. What are the goals and preferences that they're coming to this decision with? Just to get a sense of how are they reasoning through these options and certainly engaging their family and their support. But really emphasizing that they may retain capacity for certain decisions. So we don't want to ignore as you said their voice and their input, even for those more complex decisions. Often patients I'm seeing are older and they've had many life experiences that have informed their decisions, so their family does come with that knowledge. And so it's important to really kind of evaluate those aspects as well. Dr. Marron: And with that in mind, is there any advice that you might give to a family member of a patient who will be coming in to the oncology clinic with the expectation that decisions you're going to have to be made, but that the patient him or herself is not thought to have capacity presently? How can families and caregivers help to prepare for meetings like that and decisions like those? Dr. Magnuson: That's a great question. So sometimes I do see family struggle with kind of really wanting the patient to make the decision themselves. But they're just unable to kind of retain all the detailed information that would go into that decision. And I can see that sometimes be challenging for patients, especially if there's the level of cognitive impairment wasn't maybe previously appreciated to the degree that it's actually present. And so I definitely try to work with patients and families to kind of all be on the same page at kind of where that level of decisional support is needed and try to engage everyone together. I guess as far as advice. certainly as Dr. Appelbaum said, if there's concerns that you as a family member have in this regard sharing that with the team is always helpful and really kind of helps us to make sure that we're assessing at each point kind of that level of understanding. Dr. Appelbaum: It’s probably worth noting that in most cases, unless the patient him or herself has designated another decision maker, it will be the family that the treatment team will turn to to make decisions for an incapable patient. And one of the ways the family can prepare for that in advance is to try to ascertain as early as possible in the process what the patient's desires are, how aggressive they want to be about treatment, how they feel about issues like do not resuscitate orders and other choices that they may have to make, for example, with regard to palliative care or facilities where they may want to be if they get towards the end of their lives. Dr. Magnuson: Yes, I agree with that Dr. Applebaum. Kind of that ongoing discussion with families about what people's goals and preferences are and they definitely evolve over time, too, I think. So kind of having that open dialogue is important. Dr. Marron: Seems like a common theme here is how much this can change both for a given individual and then over time and according to different scenarios and different decisions. We certainly see that in the pediatric space as well as children get older and they move through the illness experience, they may develop a greater degree of ability to participate in decisions even if they're still under the age of majority and/or if they get sicker. As Dr. Magnuson mentioned, it's possible that any involvement they had may decrease over time. Any other pieces of advice that either of you would want to provide to a friend, a family member or a patient who might be coming to clinic and be faced with some of these challenges? Dr. Appelbaum: So family members are often uncomfortable with their role as decision makers. I know this from my own life, my own experience when I made decisions for my mother at the end of her life and it wasn't easy, and I still think about those choices. But there's general agreement among bioethicists today that the best way to think about these decisions is to try to ascertain what the patient would have done in that circumstance and rather than making a decision for the patient, see yourself as making the decision that the patient would have made if the patient were capable of doing that. Now sometimes we just have no evidence of what the patient would have wanted, and we have to do the best we can and we make a choice in their best interests. But in so far as we can actually reflect desires, that I think is generally acknowledged to be preferable and is part of the point of those advance discussions that we were talking about a few minutes ago. Dr. Marron: It's such an interesting and important point because I think that brings up one of the important distinctions in a practical fashion between adults and children and adolescents in this area because children don't have that sort of experience to show parents what they would want. So we have to work as a team to try to integrate both what we feel is in the best interest of the child but also in a way if we can integrating any values or preferences that we're able to elicit from the child or more often the adolescents when making decisions on their behalf. Well, before we close are there any other additions that are giving you Dr. Appelbaum or you Dr. Magnuson would like to add? Dr. Appelbaum: I think we've covered the points that [crosstalk] I wanted to make sure we did today [laughter]. Dr. Magnuson: Yes. Dr. Marron: All right. Well, thank you both and thank you to everybody for joining us with this podcast. Okay. If you're interested in learning more about any of the things that we've talked about today you can visit ASCO.org/edbook. And there you can find the paper that we dive into this in a little bit more depth. ASCO: Thank you, Dr. Appelbaum, Dr. Magnuson, and Dr. Marron. Please visit ASCO.org/edbook to read the full article. 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