Allison Magnuson's guest appearances

Allison Magnuson

Cancer.Net Podcast

Angelina Jolie

Peter Brown

Paul Chapman

Lisa Smith

Robert Miller

Julia White

Neal Meropol

Jeffrey Meyerhardt

Donald Harvey

Ezra Cohen

Susan Chang

Andreas Rimner

Jyoti Patel

Howard Sandler

Joe Rotella

OwlTail

Beverly Canin

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 voice of the world's oncology professionals. 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. Guests’ statements on this podcast do not express the opinions of ASCO. 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 this podcast, Dr. Allison Magnuson talks to Beverly Canin, a cancer survivor and patient advocate, about the importance of specialized cancer care for people over 65. They discuss how the health care team can assess and provide specific support for people over 65, why people over 65 should be included in cancer research, and tips for people with cancer in this age group.  Dr. Magnuson is an associate professor of medicine and a board-certified medical oncologist and geriatrician at the University of Rochester Medical Center. Ms. Canin is a  patient advocate, research partner, and the co-chair of the Cancer and Aging Research Group’s Stakeholders for Care in Oncology &amp; Research for Our Elders Board, or SCOREboard. Dr. Magnuson is the Cancer.Net Associate Editor for Geriatric Oncology, and Ms. Canin is an advisory panelist on the Cancer.Net Editorial Board. You can view their disclosures at Cancer.Net.    Dr. Magnuson: Hi, I'm Dr. Allison Magnuson. I'm a geriatric oncologist from the University of Rochester, and I'm here with a good colleague and friend of mine, Ms. Beverly Canin, who is a patient advocate that I work closely with in geriatric oncology. And we're here today to have a conversation about why geriatric oncology is important, and what advice Beverly would have for older adults with cancer as they're navigating the cancer care process. Beverly and I do not have any relevant relationships to disclose. Good morning, Beverly, how are you?   Beverly Canin: Good morning. I'm very happy to be here. I’m well, thank you. And looking forward to our conversation. Dr. Magnuson: Me too. Beverly, I thought maybe we could start by you just sharing your story about how you became involved as an advocate in geriatric oncology. I think it's such an interesting story. So I'd love the listeners to hear about that. Beverly Canin: I'm very happy to do that. I was originally diagnosed with breast cancer in 2000. And for over 10 years, I was a very active advocate for breast cancer doing support for individuals of all ages and also peer review in the California Breast Cancer Research Program, the Department of Defense Breast Cancer Research Program. I worked in NCI, National Cancer Institute, committees and with the FDA. And in all those years of doing both personal support for breast cancer patients and committee work at national, state, and local levels, I was never made aware of special issues for older adults with cancer until I heard a session at the Annual Meeting of ASCO, the American Society of Clinical Oncology. I had been attending that Annual Meeting, but had never noticed that there was a session on cancer and aging. I was attending sessions that pertained to breast cancer only. And I was kind of blown away at what I heard and the fact that I had been an advocate for so long and didn't understand that there was such severe issues pertaining to cancer care for older adults. And it seemed to be based on 2 basic concepts or realities. In simplistic terms, it was that older adults were systematically ineligible for clinical trials, which meant that the results of clinical trials didn't necessarily apply to older adults. So treatments were being recommended that were based on a different population. And the other thing that struck me was that oncologists didn't have any training or minimum training in geriatrics, and geriatricians had little or no training in oncology. So that's what really caused me to see what I could do as an advocate to address these issues. Dr. Magnuson: That's great. And you know those are some of the reasons why I am so passionate about geriatric oncology and really trying to move forward research about how to best care for older adults with cancer and ensure that older adults are included on clinical trials. I think delving into that piece a little bit more, Beverly, thinking about members of our audience that might be older adults who are talking with their oncologists about treatment options, knowing that some treatment options might be less studied in older adults or there may be less data. Do you have advice for your patients when they're talking with the oncologists about kind of how to talk about this and how to ask questions about how they might tolerate treatment or respond to treatment in that regard? Beverly Canin: Well, of course, the first thing is to know what studies they're basing their recommendations on. And whether they included older adults in the results of the study. And unfortunately, all too often, we're going to find that the answer is going to be no. So, unfortunately, it really is incumbent upon patients to advocate for themselves and to do some research. And there are places, of course, here at Cancer.Net, and it is a very good resource. We also have the Cancer and Aging Research Group, which I have worked with now for over 10 years. And on their website, there is help and suggestions for older adults with cancer. The basic idea, I think, no matter who the patient is, is to have someone with you to make notes so that you can look back and study later. And to also understand that in most cases, there is time to make decisions. We tend to get very panicked about any kind of cancer and some, obviously, are much more aggressive, much more quickly than others. But for the most part, there is time to do a little bit of research and not make decisions hastily. Dr. Magnuson: I think that is such important advice. Yeah, always bringing extra supports to help kind of absorb the information too is so key and really being able to have somebody to talk to about kind of that information in the context of your own personal goals and preferences is so important. And I agree also that patients and their support system can be such an advocate about aging-related issues or concerns that they might have that kind of interface with their cancer treatment plan. And I know ASCO and also the ACCC [Association of Community Cancer Centers] are really working hard to kind of disseminate information into academic and community oncology practices about caring for older adults with cancer. So I think we're all working hard to kind of spread that knowledge and patients can help us in that too. Beverly Canin: It just occurred to me, it's really important also to understand that one of the primary issues and the thing that really needs to be explored with older adults with cancer is what are their goals? What's their hope for their life? Are they more interested in prolonging their life no matter what that means or in the quality of their life? And we have to remember with older adults or with anybody, we actually have 3 ages. We have a chronological age, we have a biological age, and we have a functional age. And those vary with every individual. I mean, the chronological age is fixed. That we know. But what that means for your biology or for your function is not relevant at all. And that is something that has to be explored and that patients need to be thinking about themselves because some patients are willing to tolerate toxicity for a short term in order to extend their life for varying periods of time. To me, a 2-month extension of my life might be very valuable because there may be something that I wanted. I may want to go to a wedding or see my granddaughter graduate or whatever it is. There may be a specific goal that I would like to live to see, but for someone else, that may not be important. They don't want to undergo that kind of toxicity because it may also impair your function or probably will impair the function. Dr. Magnuson: I think that's so well said. Yes. And I think it's important for us to kind of comment on how doctors do have ways to talk with patients to assess their functional age and really kind of help understand where patients are coming at in relation to their chronological age. And how that might relate to kind of treatment and also supports that we might put in place to try to optimize that treatment experience. But your advice on the goals and values and talking about what your values are with your oncologist, I think, is so important. And really, no matter what your age is. Beverly Canin: Right. And be honest. Be honest. Sometimes we are reluctant to discuss these things, and that can be a real impediment to the right choices for treatment. And it's not always easy to be honest with yourself. You have to really think of yourself, and your family, those who are also affected by what happens to you. And so it is complicated. It isn't easy. It takes determination. And it's good to be fearless as a patient and not be intimidated by your physicians, by your doctors. Dr. Magnuson: Yeah, I heard a colleague once say that really, patients are the experts on their own bodies, right? And their own goals and preferences. So really, they are the experts there, right? And so kind of having that knowledge really makes patients such an important, that perspective is so important in the conversation. So making sure there's time and space to talk about that is really important. Beverly Canin: I also appreciate the clinician who admits that they learn from their patients and that it's impossible to keep up with everything on their own and that they really need to learn from their patients so they appreciate what patients can bring to them. Dr. Magnuson: Absolutely. Yeah. Beverly, we talk a lot about what we refer to as supportive care during treatment, meaning kind of aside from just the cancer treatment, all the extra things that we might put in place for patients to try to help them through their cancer treatment journey as well as survivorship journey. And sometimes, as a geriatric oncologist, I'm really using information about aging-related things. Maybe physical function or cognitive status. I wonder if just from a patient standpoint, you might comment on kind of why some of those aging-related aspects might be important in our cancer care and how doctors might create a supportive care strategy for patients. Beverly Canin: I think we're beginning to learn how to do this. I think that’s an aspect that has been missing for a long time in intensive care, not just for older patients, but especially for older patients where there are all kinds of issues. And we have not mentioned specifically the geriatric assessment. But this is an important way of getting to these issues. And unfortunately, again, it's something that may be used in academic centers, but you're not finding that this is happening throughout the health care system. And it's very, very important that you use some kind of tool to assess these different ages that we refer to on each patient. And we know that there are several. We know one that is used quite frequently is the one that is found on the Cancer and Aging Research Group site, or CARG site, and which has been validated and used widely. But again, not widely enough, but it is a good way to get to these different issues that are not strictly medical. Dr. Magnuson: I always use an example of if we have an older patient come in and we assess how their balance is and how quickly they're able to walk, that helps us estimate, are they at an increased risk of falling at home? Because we know a fall can really be a life-changing event. And starting on cancer treatment or chemotherapy might increase our risk for falls. So we really want to be aware of kind of all of those other aspects that might interplay with the cancer treatment so that we can try to head those off and mitigate them. So sometimes we might refer patients to physical therapy to try to improve their balance and strength as we're starting on that cancer treatment journey to try to lower that chance of falling. And I think the most important step is kind of assessing that, as you said, and figuring out where are those vulnerabilities and how can we intervene to try to help support patients in those spaces better? Beverly Canin: The other thing patients can do is to connect with other patients who are going through what they're going through. And there don't seem to be specific support groups for cancer and aging or organizations that are focused on older adults with cancer. I'd like to see that happen so that we do have that resource available. But for the moment, I think, for the most part, it's a matter of through whatever organizations there are, if they have support groups, to join the support groups and try to meet other patients who are older adults. Dr. Magnuson: Excellent. I would love to hear your thoughts on research, Beverly. You've been so active as a research advocate and we've worked together, collaborated in that space. But I'd love to hear your advice for patients, older patients who are considering clinical trials, or supportive care research studies. What recommendations you have to them about participating in research and why that might be important. Beverly Canin: Oh, it's very important as I mentioned early on. One of the issues that is still prevalent is that the eligibility criteria for participation in clinical trials traditionally excluded older adults for reasons that didn't really make any sense. It was fear of comorbidities. Older adults are likely to have other illnesses as well. So they were feeling it might confound the results to have this mix, which didn't make any sense at all. And so now we don't have upper age limits on most clinical trials. But there is a need for patients to engage in clinical trials. And I think there are a lot of misconceptions about participation in clinical trials. And particularly, any of those that have to deal with medical treatment, that patients feel like, “I want to know what I'm getting. I don't want to go into a clinical trial that is having some people on a drug and some people are not on a drug, and I don't know which group I'll be in.” But what I think is behind that concern is that you might not be getting the best care that's available at the time. And that's not true because any clinical trials you have to be assured that the participants have at least existing standard of care. And so I think dispelling myths such as that. The other thing, which you're bringing up, is that there are many, many, many trials that are so important about supportive care for older adults with cancer. And because these are the issues that fall by the wayside, but really, really influence how patients are going to respond to treatments. And so I think it's really, really important for older adults to ask their doctors about clinical trials, if they're eligible for clinical trials, and really consider participating in clinical trials. Many older adults will do so not for themselves, not expecting of results to be helpful to them, but for the future generations, to help future generations. And it's very, very important to think in that way, think in those terms. It's also important to find out, if you do start investigating any clinical trial, to find out what the costs might be to you. The ideal situation is that the patient will incur no cost at all, but we have found that that is not always true. And so it's really, really important to investigate that and understand if there is a risk of incurring any expense, which most patients can't do. And understandably. Dr. Magnuson: Thanks, Beverly. We've talked a little bit about where patients might be able to go for more resources about cancer and aging information, but I'd love to highlight that. So if you have some just suggestions for patients where they might be able to access that information? Beverly Canin: We don't have cancer support organizations the way we do for breast cancer or lung cancer and of the association that supports that. We don't have one that does that, but the best sources, I think ASCO here in Cancer.Net is providing information for patients. The Cancer and Aging Research Group website also has a page with information. The SIOG, the International Society of Geriatric Oncology, also has a page for patients. So it's really a matter of addressing the organizations that are focused on cancer and aging, for mostly focus for the research, for the scientists, but many of them also have pages that help patients. And ACCC I believe as well is a source for that. Dr. Magnuson: Absolutely. Great advice. Lots of resources out there for patients. Beverly Canin: Yeah, I mean, I wish it were easier than that. It's what we need to develop. We really do need to develop that. But we do have a group, we're engaging patients more and more in research, not as participants in the research but as partners with the researchers. This has been a very, very important development in advancing the issues and improving the research that is being done about cancer and aging. Dr. Magnuson: Absolutely. As a researcher myself, who's worked with patient advocates and what I refer to as research collaborators, my partners on research, I can't emphasize that statement enough. It has been a critical part of my learning as a researcher and I think really strengthened all of our studies here at Rochester, for sure. Beverly Canin: We have formed a research group called SCOREboard, Stakeholders For Care and Oncology and Research for our Elders, which is composed of older adults who are in treatment or were treated for cancer as older adults. And caregivers of such patients as well as advocates. And it has been very, very effective. We've been in existence now for over 10 years, about 12 years. And work very closely with the CARG researchers. Dr. Magnuson: Well, thank you so much, Beverly, for chatting today about this. I hope there were some pearls of wisdom that our listeners were able to take away from you, and I always enjoy talking to you so much. I feel like I learn more every time, Beverly. So thank you for making the time today. Beverly Canin: Well, I thank you for having me and giving me this opportunity to share my story. ASCO: Thank you, Dr. Magnuson and Ms. Canin. Learn more about cancer care for adults over 65 at www.cancer.net/olderadults. Cancer.Net Podcasts feature trusted, timely, and compassionate information for people with cancer, survivors, and their families and loved ones. Subscribe wherever you listen to podcasts for expert information and tips on coping with cancer, recaps of the latest research advances, and thoughtful discussions on cancer care. And check out other ASCO Podcasts to hear the latest interviews and insights from thought leaders, innovators, experts, and pioneers in oncology. Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds lifesaving research for every type of cancer, helping people with cancer everywhere. To help fund Cancer.Net and programs like it, donate at CONQUER.ORG/Donate.

Cancer Care and Research for People 65+, with Allison Magnuson, DO, MS, and Beverly Canin

Paul S. Appelbaum

Jonathan M. Marron

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. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play. This Cancer.Net podcast is part of the ASCO Podcast Network. This collection of 9 programs offers insight into the world of cancer care, covering a range of educational, inspirational, and scientific content. You can find all 9 shows, including this one, at podcast.asco.org. Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/donate.

ASCO: You’re listening to a podcast from <a href="http://Cancer.Net" rel="nofollow" target="_blank">Cancer.Net</a>. 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 <a href="http://Cancer.Net" rel="nofollow" target="_blank">Cancer.Net</a>. Dr. Marron: Hi. We wanted to welcome you to this <a href="http://Cancer.Net" rel="nofollow" target="_blank">Cancer.Net</a> 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 <a href="http://ASCO.org/edbook" rel="nofollow" target="_blank">ASCO.org/edbook</a>. 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 <a href="http://ASCO.org/edbook" rel="nofollow" target="_blank">ASCO.org/edbook</a> to read the full article. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play. This <a href="http://Cancer.Net" rel="nofollow" target="_blank">Cancer.Net</a> podcast is part of the ASCO Podcast Network. This collection of 9 programs offers insight into the world of cancer care, covering a range of educational, inspirational, and scientific content. You can find all 9 shows, including this one, at <a href="http://podcast.asco.org" rel="nofollow" target="_blank">podcast.asco.org</a>. <a href="http://Cancer.Net" rel="nofollow" target="_blank">Cancer.Net</a> is supported by Conquer Cancer, the ASCO Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund <a href="http://Cancer.Net" rel="nofollow" target="_blank">Cancer.Net</a> and programs like it, donate at <a href="http://conquer.org/donate" rel="nofollow" target="_blank">conquer.org/donate</a>.

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