Susan Block, M.D., FACP
Professor of Psychiatry and Medicine
Harvard Medical School
» Walter: So it's my great pleasure today to welcome Dr. Susan Block as our ACE lecturer today. Dr. Block is the Chair of the Department of Psychosocial Oncology and Palliative Care at the Dana Farber and Brigham & Women's Hospital in Boston and Co-Director of the Harvard Medical School Center for Palliative Care. Dr. Block received her AB from Stanford University and her MD from Case Western Reserve and completed residencies in both internal medicine and psychiatry at Beth Israel Hospital in Boston. Throughout her career, Dr. Block has had a strong interest in improving care of patients with life threatening illness and in a medical education reform and she is boarded in both psychiatry and palliative medicine, and in her career, she has had a number of interesting initiatives that she has been involved with including serving as the Assistant Director of The New Pathway at Harvard Medical School leading its curriculum reform effort, which served to integrate humanism and social science into the medical school curriculum. She has been very central in developing and moving forward the whole field of palliative care. She conceptualized and developed The National Program on the Project on Death in America, which actually was responsible for the professional development of a number of our colleagues in medicine, oncology, internal medicine, and palliative care around end-of-life education. And she was responsible in great part for the recognition and accreditation of the specialty of hospice and palliative medicine. Dr. Block leads a multidisciplinary team at Harvard, which is a joint department of palliative care docs and psychiatrists that have a wonderful integrative program together and we talked a bit about how much those two disciplines have created a win-win situation for the patient and for teaching and for the support of families. Dr. Block is well published having written over 130 articles and other scholarly publications and so we're really pleased to have her here today. Susan, thank you very much for coming.
[ Applause ]
» Dr. Block: Thank you very much Walter for the generous introduction, it's really a pleasure to be here and I'm looking forward to sharing some of my own thoughts and hearing some reactions from you. I think that I see you as fellow travelers since you're part of a large comprehensive cancer center with a strong research mission and where we are all trying to be on the cutting edge of discovery but also on the cutting edge of humanism, compassion, and excellence in communication. Now....
I'm just figuring out the technology. So what I'd like to try to accomplish in our time this morning or this afternoon is to kind of review the rationale with all of you for holding conversations about patients' values and goals early on with oncology patients who have poor prognoses, to think about the opportunities for and the benefits of these conversations in oncology practice, to reflect a little bit on the barriers to discussion about end-of-life issues in oncology, and to propose to you an advance illness checklist to guide discussions about goals and values about end-of-life care during the oncology care experience, and then we're going to do a little demonstration of how one might implement an advance illness checklist in oncology practice, which Dr. Baile will help me with.
So I think it's important to put this in a context, and unfortunately, we have a lot of data, which demonstrates dramatic and, I think, troublesome deficiencies in the end-of-life experience of cancer patients. And I just want to review this briefly with you. So first of all, the literature suggests that aggressive care including the use of life sustaining therapies, intensive care unit admission is not associated with improved survival in patients with advance cancer, that patients who receive hospice care generally report better quality of life at the end-of-life than those who do not. Aggressive care not only doesn't improve survival but is associated with reduced quality of life and more physical and emotional distress at the end-of-life for patients. In the last month of life for cancer patients, about 40% of them receive chemotherapy, almost half spend some time in the emergency department, half get admitted to the hospital, about 8% die in an ICU where 55 to 75% have serious pain, anxiety, and discomfort, 35% are never referred to hospice, and of those who are referred to hospice, hospice referral takes place late on average of 16 days before death. From the perspective of family members and caregivers, death in an ICU is associated with 11 times higher rates of posttraumatic stress and 9 times higher rate of generalized anxiety for bereaved caregivers. Hospital deaths are associated with 10 times more Prolonged Grief Disorder in bereaved caregivers and family members of patients who die report higher satisfaction levels with care in hospice than in the hospital consistently and across the board. Here's a little bit of data about family's perceptions of the quality of end-of-life care in the hospital, this is from a large national mortality follow back study, where family members were asked about their observations about the care of their loved one in the period before death: 78% of families reported that there was inadequate contact or communication with the physician, 51% described inadequate help with emotions, 50% said there wasn't enough information about what to expect in the dying process, poor family support was described by 38%, lack of respect by about a fifth, and inadequate symptom control by about 20%.
I don't think any of us would agree that this is an outstanding report card about what we're doing now in caring for patients at the end-of-life. My own view is that advance care planning and really integrating it into the process of cancer care beginning early on and extending through the disease trajectory is an important element that can help us address some of these deficiencies in end-of-life care. The ASCO, the National Quality Forum, and other organizations have recently identified advance care planning as a major quality indicator for good end-of-life care across all diseases and attesting to the, the consensus among policy makers and leaders that this is a core element of good quality clinical care, not just palliative care.
Advance Care Planning, just to kind of review a definition, is a process through which patients have an opportunity to explore and express values and choices about future health care, especially for care at the end-of-life with the healthcare team and with their families. The goal is to assure that patients' values and choices are respected and honored, if the patient is unable to speak for him or herself. The key elements of advance care planning include completion of a healthcare proxy or durable power of attorney for healthcare, to identify a decision maker if the patient is unable to speak for him or herself, communication with the family members and with clinicians about these values, preferences, and goals that should guide treatment so that the family member who is acting as the health care agent and the clinician who may have to make actual decisions know what the patient wants.
There's been a lot of forward movement on the idea about advance directives and living wills in the past 20 years and they've been proposed as a dramatic solution to some of these issues. I think that consensus of expert opinion at this point is the advance directives and living wills where you try to anticipate every situation that might happen and say what you would want are not, haven't really improved care and so I'm not focusing on advance directives and living wills at this conversation. I don't think there's anything wrong with them, but I don't think they are a good investment of time and effort because they don't appear to improve care significantly. But other elements of advance care planning include the idea that this can't be a one shot deal either in the two days before the patient dies or at the time of diagnosis, but rather it's a process that needs to be ongoing with patients and family members as the medical situation evolves. Engagement of the health care agent is key and documentation of health care, of the discussion, values, and goals, and health care proxy is essential in the medical record and the advent of electronic medical records I think is a real boon for making sure that this information is available across multiple settings of care. Many states, and I gather Texas has this under consideration, are also looking at something that's called the POLST or the Physician Orders for Life Sustaining Treatment that was developed in Oregon as a way of documenting patient values and goals across clinical settings in the form of medical orders.
When we talk about advance care planning, and I'm not going to go into this in great depth, I think it's very important to put a significant asterisk in the upper corner when we talk about it because there are huge cultural differences and large effects of race, ethnicity, and religion on patients' attitudes about an engagement with advance care planning. Blacks and Hispanics are much less likely to engage in advance care planning than whites and more likely to want aggressive care, and highly religious patients, interestingly enough, and this is work, this is all work that I'm quoting from our center, highly religious patients are much more likely to prefer aggressive care including life sustaining treatments and express more concern about efforts to limit life sustaining treatments. So in having these conversations with patients, we need to be very aware of the cultural differences that may guide us and force us to modify our approach to be able to have these conversations really be patient centered.
So to review very briefly my reading of the benefits of advance care planning, and this comes from a variety of different sources, there's a list of references at the end of the presentation, although some are sprinkled in, first of all, in general, patients welcome advance care planning, but they don't want to initiate it themselves, they think it's the doctor's job, the clinical team's job to initiate the process of advance care planning. The overwhelming majority 80 or 90% of cancer patients want to know information about prognosis. Even when the information is upsetting, the caregivers, their family members want to know information about prognosis because it helps with decision making and planning for the future. There's always concern in oncology and other fields that prognostic is sharing information about a bad prognosis is going to compromise hopefulness in the patient, but the literature, and this is from a study that was done by my colleague Jenny Mack, shows that even parents who are getting information that their child is dying find that having this realistic information are more hopeful than parents who don't have the information about prognosis. It's kind of a paradoxical finding. The sicker the patient is the more caregivers tend to prefer more information. This is kind of a little bit against some of the prevailing practices and some attitudes in many settings including cancer settings, including cancer centers.
But the reason that prognostic information is really critical in advance care planning from my point of view is that having prognostic information has a major effect on patients' choices about what kinds of treatment they want. So patients who expect to have a shorter prognosis are more likely to prefer less aggressive care, are less likely to prefer aggressive care, that's a better way to say that. And so if you think that you're going to live for five or ten years, and that and something happens acutely, you are much more likely, and it's completely reasonable and appropriate to say yeah do everything, but if you think and understand that you have a terminal illness for which there are no more good treatments that can slow down the growth of your cancer, you may make, and the literature shows that people do make, different choices towards less intensive and less aggressive treatment.
More evidence: Early discussions of end-of-life care issues among cancer patients is associated with a lot of improved outcomes. Patients are more likely to have their wishes followed and to have the kind of deaths that they wanted, they're more likely to enjoy a higher quality of life, they're less likely to go to the hospital and end up in an ICU, they are more likely to get into hospice and to get into hospice early, their family members are likely to be less stressed, less anxious, less depressed, less traumatized, the family members are more satisfied with the quality of care of their loved one, the physician-patient or the clinician-patient relationship is strengthened, and also costs are reduced.
So I think that from the clinical standpoint these are all terrific and important outcomes, I think for some clinicians the most surprising one here or a surprising one is that engaging in these conversations actually strengthens the doctor-patient relationship. I think that there is a perception that if you bring this up with the patient you are in some way violating your covenant with the patient to do everything and to treat them aggressively and to hopefully gain a cure for their illness. And I think that the literature does not support that that's an accurate belief. So this is, there's also evidence that advance care planning does not leave people more depressed and anxious, it does not take away their hope, and that the current status leaves many of us as clinicians stressed by these conversations and the kind of decisions that we have to make with patients and families who are unprepared to have these conversations because they haven't had prior conversations and where there's a medical crisis going on in the hospital, and I can't tell you how many times just in the last week I've had conversations with intensivists who are pulling out their hair about patients with metastatic cancer who arrive in an intensive care unit with no prior conversations about end-of-life issues and where the decisions have to be made very, very rapidly where there's a sense, an atmosphere of crisis where the patient may not be able to participate and the family is overwhelmed with stress, terror, distress, about what's going on with their loved one, not a good time to be making big decisions.
So I think that the summary here is that having, engaging in the process of advance care planning, helps patients feel confident that their end-of-life wishes will be honored, it prepares the family emotionally for what might come ahead, it gives information about the decision making process around goals and values to the health care proxy, it relieves the burden on family members, and it supports the oncology staff in doing the right thing. I learned a lesson about relief of burden on family members in a very personal way about 11 or 12 years ago when my father had a very unusual tumor of his spinal cord and had to have a very high risk surgery, and I was his health care proxy and I had a conversation with him, a kind of general values and goals kind of conversation about, you know, you know, what do you want if things go badly? And I realized on my way home from having had that conversation the night before his surgery, that I really hadn't asked the right questions and I hadn't gone deep enough with him and I turned around on the Bay Bridge, got off, one and only time I've ever been on Yerba Buena Island, that little island there, and got off and went back to San Francisco where he was hospitalized and back to his room and I had this agonizing conversation with him where I said, Dad, the surgeons are saying that you have a 25% likelihood of being a C12 or a high quadriplegic at the end of this surgery, and I really need to know kind of how much you're willing to go through in order to have a shot at continuing to live if the best life you can hope for is having that kind of high quadriplegia, and I'm afraid that I will be in a position of having to make decisions for you and I won't know really what the right thing is and so we had this conversation and what he told me was some things that surprised me, he said, I'm a tough guy, I can take a lot, I'm willing to go through a lot, if there's a chance that I can have a tolerable quality of life. So that was not a surprise to me. But what was a surprise to me was I said, well what's a tolerable quality of life? And he said, well, if I can eat chocolate ice-cream and watch football on television. And this was a, the chocolate ice-cream was not a big shock, but the football thing, I'd never watched my father watch football in my entire life. I've no awareness that he liked to watch football and I would not have thought that that was the case.
So and anyway, that was some useful information and so he had the surgery, it went fine, and then he had a terrible complication to the surgery and was going into respiratory failure and the only thing that was going to help was whether he should go back to the OR and I had like three minutes to make a decision at this point and I asked the neurosurgeon, well, is there any chance he can eat chocolate ice-cream and watch football? And the neurosurgeon said, yeah there is a chance, and so I said okay, he will, we'll have him go back to the operating room and I knew, I mean, he was extremely ill at that point, he faced at this point a 40-50% chance of being quadriparetic and I really struggled about, knowing that I would feel incredibly guilty if I made a decision to let him go at that point because I wouldn't be sure that was the right thing and I would also feel incredibly guilty if I made the decision to have him go back to the OR and he suffered, which I anticipated that he would, you know, in a prolonged recovery. And what I realized was that I wasn't making the decision that my dad had made the decision and that I had no, that the burden was not on me, in a sense, and I, you know, I sort of knew that intellectually, but I felt it at this very deep emotional way in this situation so my dad went back to the OR, they did the surgery, he had a terrible recovery that went on for two years, but he went on to live for 10 more years and wrote two books, and didn't watch football to my knowledge, but ate a lot of chocolate ice-cream. So that's, but that was, it was a very profound learning experience, which is why I'm kind of delving into it.
So, you know, I think what we're trying to achieve for patients who are going to die is we're helping them, we want to try to help them be at peace at the end-of-life. And part of that, and this is work that was done by my colleague Holly Prigerson and Jenny Mack, these are some of the core elements of what from patients' perspective would be defined as peace. It's an understanding of the reality of what's ahead for them with their illness, it's the ability to prepare an absence of struggle against what's happening, a sense of appropriateness and meaningfulness while the patient is living, feeling whole and not diminished as much as possible from the illness, being comfortable and not afraid, having a sense that their goals and values are honored in the way they receive care and having their family members be at peace about decisions. And I think that one of the things that is so key for me about advance care planning is I think it helps us support all of these really important outcomes.
Other things that are important, I think, is that when we do this process upfront, I think, staff are more at peace with the process of care and with the outcome, the moral distress that I hear about from my nursing colleagues especially is lessened, that we can feel a sense of pride in our teamwork and helping patients and their families get through a very painful process of coming to the end-of-life in a meaningful and respectful way, and I think even though I don't think the data on this is very good, but there is less burnout in our professions.
So there are barriers to advance care planning in oncology and I just sort of want to briefly kind of name them. The big one, the first one I want to say when we say what are the barriers? I say oh time, we don't have the time. So I think it's important, and this was some very nice work that was done by James Tulsky and then by Deborah Roder to realize that these conversations, even though we think of them as, you know, mammoth marathon conversations on average take 5.6 minutes when done by oncology providers. These are not long interventions. In those conversations, doctors do most of the talking, there's a little exploration of patient values, and the conversations as they exist currently, don't meet the quality standards proposed in the literature, and so that we are having conversations that are, you know, on average about 6 minutes and they don't really do the trick. Expert conversations, and this was a really nice study looking at a bunch of palliative care experts and how they hold the conversations, these conversations take longer, 8 whole minutes, maybe 9 whole minutes longer up to 14.7 minutes, again these are not marathon discussions, and are different in their tone and process. The physicians are less verbally dominant in them, they're more focused on psychosocial lifestyle issues, values, goals, and there is more of an emphasis on partnership building and with an extra 8 minutes the quality of these conversations appears to be much better, so I don't see, I think time is a barrier, it's real, we're all under tremendous pressure, but I think that there is kind of an exaggeration of what a barrier it is in this setting.
Other barriers are the perception and sometimes the reality that patients don't want to talk about this and it's scary to talk about and patients are at best ambivalent about talking about it and yet most patients are appreciative when they have the chance to talk about this when they have a serious, when their cancer is progressing. There is uncertainty about processes and outcomes that make us a little nervous about what to say, like if the patient asks me what the prognosis is, it's really hard to be sure and I can't know exactly whether this patient might be able to eat out another couple of years with their disease, until I think that that's a very appropriate barrier that we should be kind of humble about. It's hard to find the right balance between supporting patients' hope, which I think we believe in oncology. I certainly believe is very important but also giving them realistic information. There's a perception that focusing on palliation and focusing on aggressive treatment is in some ways mutually contradictory and we can't do that, physicians, and this is again work that comes out of our group, clearly lack both confidence and competence, there've been lots of other studies that demonstrate this in having effective end-of-life conversations. You know, we live in a society where, you know, I think there is a difficulty accepting the fact that people die and there're a lot of unrealistic expectations that patients have about, oh I'm going to come to M. D. Anderson and they're making cancer history there, so they're going to make my cancer history. And it would be so wonderful if that ever happens, but in the meantime, we need to have a plan B, is sort of my belief about it. But I think not only do the patients have these unrealistic expectations, I think we as clinicians as physicians, nurses, we have un, nurses maybe less so, because I think the nurses have their heads on straight about this, but the physicians, at least, have very unrealistic expectations about what treatment can do at times and think that, you know, more treatment is going to make things better and better and better whereas it doesn't necessarily do so and I think that the big palliative care randomized controlled trial from Mass General that was published in August suggests that good palliative care actually prolongs life as much or more than even bevacizumab. So, you know, I think we need to be rethinking some of these expectations, and you know, I think we also need to recognize that I think for many patients death means giving up and for many doctors death means failure and so that these are all things that make us tend to avoid these conversations. And when we do have them, there are some problems. They tend to happen late, the patient isn't prepared, and at times, particularly when somebody is hospitalized when they are at their worst, they may not have all their cognitive abilities to make these complex decisions that we're asking them to make, they feel especially vulnerable, regressed, and dependent, when they are very ill. These are bad times to be having, to be having conversations that require such high level emotional decisions and thinking.
The conversations often are, happen without a context, prognosis isn't discussed explicitly and the patients don't get information about what the big picture is that they need to make informed decisions so, you know, the big picture in my mind is, you know, six months ago, you know, we hadn't gone through all of our treatments, you were walking around, you were able to go to work some of the time, you were able to really engage with your family in ways that are meaningful to you. In the past three months, you've really gone downhill a lot and we don't have treatments that can reverse this process, so we're in a different situation now and the decisions we make need to kind of reflect the realities of this change in your circumstances. So we need to have a different kind of conversation with patients that reflects the big picture.
You know, we in medicine, we're all about the procedures, you know, should we put the tube down the throat, should we resuscitate them, should we give electroshock, pressers, all those things. But you know, patients don't want to talk about procedures, when they think about quality of life and what's important to them, they are concerned about the things, about their family members, they are concerned about their personal goals, they're concerned about their comfort, those kinds of issues and I think we need to learn to have a non-procedure oriented conversation about values and goals, which is what patients live with and need in order to have effective conversations. There's often a tendency in having these conversations to give the Chinese menu, you know, do you want resuscitation with or without ventilation, pressers, and antibiotics? You know, which is insanity. Patients need to be guided by us in terms of what makes medical sense. The patients are experts on values and goals, we're experts on the procedures and treatments that will help patients achieve those values and goals. And then I think we also need to recognize that it's very common for family members to be in surrogate decision maker roles about 30% of the time for older patients and we need to be aware of the burden and the challenges that they face in those roles.
So general principles for end-of-life communication, I think these conversations are about helping everybody manage their anxiety the patient, the family, and the clinician, I'm not exempting the clinician and about decision making and if you only focus on decision making, either you don't engage enough with the things that are making the patient anxious or should be about what's ahead or you terrify them and overwhelm them, and so you need to be managing these two things simultaneously. Decisions require renegotiation over time and patients cope better with anxiety and with a, with difficult news when you think about end-of-life planning and discussion as a process, you know, I always think about, you know, you have people who are running, you know, at a 100 miles an hour, treatment, treatment, treatment, more chemo, more chemo, more chemo and they crash into a brick wall and say okay no more treatment, you're dying and I think that that's too much psychologically for patients to take in and to respond in a... we can do better than that, I think. And we need to think of it as a process where we're giving them information along the way about what's happening with them. And my, you know, and I think that we also need to think of these end-of-life conversations as being a kind of procedure and my surgical colleagues do a lot of procedures, this is, this needs to be our procedure in oncology in palliative care and we need to get really good at it, we need to get trained in labs like Walter's labs and in places where we can, where people can really learn how to be effective compassionate communicators of these issues and more and more I'm becoming to believe that having sort of road maps and checklists can be a useful resource. So in these conversations, I think the key message is we need to help the patients focus on what's important to them in terms of quality of life, suffering, survival they care about rather than what's relevant to us, which is the procedures.
As we talked about before, hope is important to nearly everybody, but we tend to focus in medicine on the biomedical hopes, the hope for a cure, the hope for disease prolongation. Patients have all kinds of other hopes and we need to help them focus on other things that are more achievable sometimes than cure or life prolongation and there has been a lot of work on trying to understand, Walter has been at the forefront of some of this, but other colleagues as well about what are, what are the key elements of effective compassionate discussions and this is no surprise to anybody here, but empathy, understanding, commitment to providing support, reassurance that you're not going to abandon the patient, making sure that the patient's symptoms are controlled well enough that they can even listen to you, emphasis on what can be done rather than what can't be done, it drives me crazy when you hear these conversations about, well, if you, about hospice, for example, about not focusing on all the great things hospice can do, but well you won't be able to come in to get your labs drawn, or you won't be able to get radiotherapy, or you won't be able to get chemo, or you won't be able to get this or that, and that scares patients and it makes them feel diminished and frightened that they won't have access to the kind of help that they need. And then as I said before, this focus on the non-biomedical hopes that patients have.
So I'm very focused on system change and I've been thinking a lot about what would a system that did this look like and I think the cardinal element of the system is that all patients would have the right conversation at the right time with the right clinician. And that's very general and I'm going to get much more specific. We need an accountable system to assure that patients designate health care proxies as a first step and that involves a patient education campaign, a commitment on the part of healthcare organizations for developing systematic processes to make sure that health care proxy documentation and discussions are included in the overall system of care that as part of our registration process patients would designate a health care proxy. For most patients, it's not a really big deal to designate your health care proxy and that it would just be woven into the fabric of the way we do things, I can tell you that until recently that was not at all the case at my institution and we've been able to make some changes there and that we would be having advance care planning conversations routinely with patients in the outpatient setting way upfront and we'd be measuring these and seeing whether, how close we're getting to achieving our goals.
We need to identify, figure out a system to identify people who are at high risk of needing advance care plans and those are patients with poor prognosis cancers, you know, patients with pancreas cancer, glioblastoma, stage IV non-small cell cancer, you know what these diseases are, as well as people with progressive widely metastatic breast cancer, prostate cancer, and so on. In our system, we're working on a series of triggers that would identify patients so that we can define a universe of patients who need to have these conversations and monitor that and move towards, towards integrating them into practice, and then we need to have some structured conversation guides, scripts, checklists that could be used by clinicians as resources and tools to help make sure that we're having the right conversations with our patients so that we get good information about what they want and don't want. We need training for our physicians, our nurses, our social workers, about how to conduct appropriate advance care planning conversations and the question about who engages with it is really complicated and it depends on your team structure, but I would say that everybody has a role in this, but there needs to be one person on the team who is accountable. And we do have more and more training programs and ways of teaching communication skills that can be helpful to all of us in improving our competencies and having these conversations and my own belief is that we should define some minimum competency standards for clinicians who are going to engage in these conversations regularly and measure people against competency standards.
Then for an organization, I think, we need to have some quality standards that are promulgated throughout the system including electronic medical records that support good documentation as well as identification of patients and that we report these metrics as part of our quality measures. And so this is, I think, what a first class system for integrating advance care planning upstream would look like in a cancer center, and I'll tell you a little bit about what we're doing at Dana Farber, just because it's an example. We're in the piloting phase of this initiative, but we tell patients that cancer is a life threatening illness in which unexpected medical issues arise regularly, therefore, we expect all patients to designate a health care proxy within their first three visits at Dana Farber and we encourage them and educate them about the importance of having these conversations with their proxy about what they want, what's important to them, but the expectation is that everybody is assigned a health care proxy immediately.
When we started this, there was widespread panic among the oncologists, to be honest, and including the worry that our patients would run down the street to our sister hospital Mass General and decide to get their care there, where the institution wouldn,t have given up on them before they even started, but what we've learned is that patients really value having these conversations, you know, having a backup plan and having the health care proxy done that we haven't seen attrition, we haven't seen patients being upset by it, and the oncologists now understand that this is a really important part of the, of care, to varying degrees, I don't want to overstate that, but there's more acceptance of it. And then we have started a project where we have a new policy that all patients with advance and poor prognosis cancer are expected to have early discussions between six months and one year what, what a prognosis is, you know, between six months and one year, it's about their values and goals of care as their illness progresses. And that these conversations get readdressed and documented in the electronic record, so if the oncologist answers, No to the question, would you be surprised if this patient died within one year? That patient is expected to have a conversation, that oncologist is expected to initiate a conversation, is a better way to say that and to have it documented in the electronic medical record in a special advance care planning module. And we've begun a process of training our physicians how to have these conversations. We have been using, what we're calling, an advance illness checklist which I've been developing with my colleague and friend Atul Gawande, who is a surgeon who has developed checklists that are in wide use nationally and internationally for surgical care and we're trying to learn about whether this kind of a checklist is going to be effective in this situation, but the checklist includes the screening question would be: Would you be surprised if this patient died in the next year? If not, the oncology clinician prepares the patient for subsequent discussion. This normalizes the fact that we're going to have this discussion, it explains the goals of the conversation, and then we provide the patient with some structured questions in advance of a subsequent visit to help them prepare for an advance care planning discussion at the next visit and those kind of structured questions are about prognosis and about key values and goals.
So this is our advance illness checklist and if you kind of take a look at it, and in a moment we're going to show you it in action. It is a little bit of a different kind of conversation than one often hears, that I often hear in oncology and we think that it does a really good job of identifying the key information that is useful in guiding care for the patient. And then the last part of the checklist process is documentation and we have a, in our, this is a copy or version of our electronic medical record, and you click on a little icon in the upper left corner and this screen comes up and then you click on the bottom left where it says treatment goals, which I know you can't see, but I couldn't figure out how to blow this up, you click on that and it goes to the next page and here we have the checklist which is sort of embedded in the electronic medical record, and if you click on those little plus signs, the question is there so the oncologist can refer to it and there are a series of dropdown menus that also come up, but it allows you to describe what the patient understands about their prognosis, their information preferences, their fears and worries, goals, trade offs they're willing to make, function and concerns about sharing this information with family members.
So what I'd like to do now is to go and try to show you a checklist conversation to make it a little bit more real and Walter has agreed to be my partner in having the conversation, and in this scenario, he is a 57-year-old investment banker. He has pancreatic cancer that he has had for the past two months. It's been unresponsive to gemcitabine. He had scans last week and was informed that the gemcitabine wasn't working and that we are going to meet this week to begin to discuss treatment options, values, and goals if he becomes sicker. He is married. He has two children who are in college. His wife is a judge. He very much wants his family to live a normal life. He doesn't want the kids to be disrupted in their school. He doesn't want his wife to, you know, come to appointments with him so she can continue her judge work, but he is going downhill. He is losing weight, he is having, has poor appetite, and he is having abdominal bloating and discomfort. Okay so that's the scenario. I know this patient, I've been taking care of him for the past two months, but I have not had this particular conversation with him. Oh, wait, I just wanted to, I meant to go backwards, I'm sorry, ooh.... Sorry I just want to go back, oh go to the checklist. Hmm... well maybe I won't do that. Maybe I can.... Oh hang on one sec... okay I'm not going to fuss with that. Alright so we're going to bring these chairs up here.
» Dr. Block: Does anybody knows how to do that, I don't want to take the time to do it, to get to that slide again, I did something wrong. Oh! [inaudible] okay, but I don't know how to drive this thing.
» Dr. Block: Oh, okay down here, okay great. Alright.
» Dr. Block: Great... yeah... okay, there we go, alright.
Is this working?
» Dr. Block: Okay terrific. Alright. You're in the exam room. I'll kind of come in, so Hi Mr. Jones.
» Mr. Jones: Hey Dr. Block! How are you?
» Dr. Block: Good to see you, have a seat.
» Mr. Jones: Yeah.
» Dr. Block: I wanted to check in and see how you're feeling today.
» Mr. Jones: A little bloated and I've got some abdominal pain, I'm feeling tired.
» Dr. Block: Yeah, yeah. So...
» Mr. Jones: The chemo was pretty rough.
» Dr. Block: Yeah, so you're not feeling as well as you'd like to feel?
» Mr. Jones: Could be better.
» Dr. Block: Yeah, yeah, alright, well I want to make sure we come back at the end of the visit today because I have some ideas about things that might be helpful with some of your symptoms.
» Mr. Jones: Okay.
» Dr. Block: So that we can address those, but last week when we were talking about the results of the scans, I told you that I, I thought this would be a good time for us to sit down and have kind of a, what I would call, a big picture conversation about sort of, you know, how you're feeling, where you are, and where do we go from here.
» Mr. Jones: You know, those scans were kind of discouraging, I've been thinking a lot about that.
» Dr. Block: Yeah, tell me a little more about what you've been thinking about?
» Mr. Jones: Well, you know, I mean, I mean I know pancreatic cancer isn't such a great thing, and I was really hoping that the gemcitabine was going to do something and it really didn't and so I've been thinking about, you know, what's next? Do you have other treatment, is there something else that's going to help me? What do we do and so I was hoping to hear from you. I haven't really told my family much about it, though.
» Dr. Block: Is that right?
» Mr. Jones: Yeah, you know, my, my, my wife in fact was just appointed to Superior Court and God, the last thing I want is to sort of, you know, knock her for a loop.
» Dr. Block: Yeah. So you're concerned that if you talk with her more about what's going on and what you're facing, that it would be really tough on her.
» Mr. Jones: You know, she has been really great and I just really would feel badly to see her burdened.
» Dr. Block: So that's a big concern that you have about burdening her?
» Mr. Jones: Oh yeah.
» Dr. Block: Yeah, so let me step back for a moment and I want to just make sure that you and I are on the same page about where things are with your cancer, and I too really had wished that the gemcitabine would work better than it did, and I'm disappointed in the, in the medication, but I think we need to kind of look at where we are and try to make some decisions, but let, give me a sense about kind of what your sense is about, about where you are with your disease right now?
» Mr. Jones: Well, you know, I'm an internet freaky, so I know that pancreatic cancer is not a good thing to have, right, but I know that also a small number of people also respond to gemcitabine, and get some time.
» Dr. Block: Hmm... hmmm.
» Mr. Jones: Right, so I was really hoping for that.
» Dr. Block: Yeah.
» Mr. Jones: And so I know it's not a good thing when, you know, you get treatment and you get scans and it shows that the treatment, treatment's not working.
» Dr. Block: Yeah.
» Mr. Jones: So I mean, I don't know if there's something next, if there's something experimental or, or what? But it's very confusing to me right now what we're going to do.
» Dr. Block: Yeah. Well I think that there certainly are other treatments that are available and I think the real question is sort of what makes sense in terms, in light of the things that are most important to you. We have other treatments, they tend to be less effective than the gemcitabine, and there certainly are some experimental treatments here that would be available, but I want to make sure that whatever we decide we figure out something that fits with the things that are important to you. So let me, let me ask another question, which is sort of, you know, when you in trying to think about what you want next, you know, how much information do you think it would be helpful to you to have about what's likely to be ahead with your illness?
» Mr. Jones: Well, you know, I'm the type of guy who really needs a lot of information, you know, I work in a bank and I'm kind of a numbers guy.
» Dr. Block: Yeah.
» Mr. Jones: And so I'd really like to know what my chances are and because, I mean, if I don't have any chance, you know, I don't want to be in a hospital, get sick with side effects of stuff and, but if there's a chance then, you know, maybe I'll take it.
» Dr. Block: Yeah, and let me push you a little bit, a chance of what? What would you be hoping treatment would offer?
» Mr. Jones: I don't know maybe a year, two years something like that.
» Dr. Block: Yeah, yeah.
» Mr. Jones: You know, my son, my son's a junior in college.
» Dr. Block: Right.
» Mr. Jones: And so I'd like to see him, you know, graduate, I mean, I don't know if that's unrealistic or not, but that would be one, one thing for me. My wife just got appointed to the bench and sort of, you know, it's really weird because it's a time we should be celebrating and we got this.
» Dr. Block: Yeah, yeah well, you know, I, I wish I could say to you, you know, Walter I really think you're going to be here for your son's graduation, and I'm still hoping that that might be possible, but I think it's a rather distant hope. And I'm worried that even with the best, most aggressive treatment we have that that's unlikely to be an outcome.
» Mr. Jones: Hmmm... that's not so good.
» Dr. Block: No.
» Mr. Jones: So what next?
» Dr. Block: Well, I think that there certainly are things that can help you feel better, and I don't think we should completely rule out further treatment that might possibly buy you a bit more time, and that's where we need to go in our conversation is to sort of think about that together, but let me ask again, I mean, it sounds like about your, your sort of fears and worries about what's ahead with your illness. You mentioned you don't want to be in the hospital, and what are the other things that you're concerned about if you think about your disease getting worse?
» Mr. Jones: Well, I don't want to be a burden to my family. Okay, I don't want to end up in the emergency room, you know, with complications every week, something of that sort.
» Dr. Block: Yeah.
» Mr. Jones: I don't want to have pain on the other hand.
» Dr. Block: Yes.
» Mr. Jones: So I, I guess that the most important thing, you know, for me is to be as independent as possible and, you know, not be a burden to my family.
» Dr. Block: Yeah.
» Mr. Jones: Those are biggies.
» Dr. Block: Yeah.
» Mr. Jones: Especially my wife who has been really so great throughout this whole, I mean, you know, it's a short illness, but she's really been there for me.
» Dr. Block: Yeah. Well, it kind of leads us into sort of a question about sort of trade offs, because, you know, everything has sort of risks and benefits, and one of the questions that I would ask is sort of you know, if you had chemo that could buy you a few more weeks or a month, you know, is that worth for you chances of going into the hospital of, you know, having to come here once a week for the infusions or giving up some of that independence? Is that...
» Mr. Jones: So you're talking months uh? With this disease?
» Dr. Block: I think that's what's likely yes.
» Mr. Jones: Wow. You know, if I'm going to get treatment and it's going to make me sick, then I don't want it, I mean if I can, if you can help me be comfortable and manage the way I am, I'd much rather do that, I don't want to be up here, I mean, I've seen patients up here two and three times a week either for treatment or because of complications and I don't want that, but one thing I really need you to help me with I need you to help me tell my wife. Can you do that?
» Dr. Block: Yes. I think it's really important.
» Mr. Jones: Because I'm really scared.
» Dr. Block: Yeah. And, and what are you most afraid of in talking to her?
» Mr. Jones: I mean I think that she's just going to fall apart, I mean, she's strong, she's a judge, you know, but she's got such a tender heart and we've had a great marriage.
» Dr. Block: Yeah. Well I think it's really important that that we figure out a way and I'm happy to help you in whatever way you think would be helpful to you. Now who is your health care proxy?
» Mr. Jones: She is.
» Dr. Block: She is, okay, so she, and have you had any kinds of conversations with her about any of these? About your wishes
» Mr. Jones: I must admit... You know, things have happened so fast.
» Dr. Block: Yeah, yeah.
» Mr. Jones: We just haven't had time to talk so I'm afraid that this is going to have to be like from the beginning with her.
» Dr. Block: Okay, alright. Well I definitely think that this is a conversation that we need to have and we need to involve her and I'd be happy to help you...
» Mr. Jones: That would be great.
» Dr. Block: And I'm sorry we're at this place in your illness.
» Mr. Jones: You know, I've got to think about a lot of stuff and, you know, we've got, I've got to think about a lot of stuff. Because if there's not much time left, then I have to start thinking right away.
» Dr. Block: Okay, and I'm in it with you and will try to do my best to help you.
» Mr. Jones: Thank you so much.
» Dr. Block: Okay, alright so we'll stop. Alright, so I'd like to...
[ Applause ]
» Dr. Block: So my, my goal in the last few minutes is to engage you in reflecting a little bit, I first might just ask Walter as the patient how this conversation felt? And to just share some observations, reactions.
» Walter: Well, it was very scary, I think, and the point that I was sort of dancing around it, didn't want to get to, but you pushed me on a little bit was how much time I had left and so when I heard six months it sort of propelled me into a different realm.
» Dr. Block: Yeah.
» Walter: You know, and it was a lot to absorb all at one time and maybe in different circumstances I would have said I need to go home and think about this, because it just kind of blew me away, but in a way that my mind, only mind could think about was my family and the fact that they were so unprepared and we hadn't had any discussions and I really needed help with that, so I was feeling very helpless and very scared at that particular moment to find out about that.
» Dr. Block: And did you feel that we were talking about the right questions from your point of view as hard as it was? Questions that were meaningful to you and that you felt that you needed to think about.
» Walter: You know, the big question for me was whether or not, I'm a banker, so I deal in risks, you know, risks of loans and things of that sort, so I understand that and the question for me was what's, what's the likelihood that I was going to get better and the moment that I heard that it wasn't very likely that I was going to get better, then all of these things about, you know, treatment sort of went to the backburner, it was very, very hard to accept that.
» Walter: But I knew that at some moment I would have to.
» Dr. Block: Okay, great, thank you. So let me, let me throw it open and invite people from the audience to share any thoughts about how, how they felt about the structure of the conversation. Now you could see that I couldn't adhere rigidly to this checklist right, and it would have been pretty awful to do that, but I certainly used it in my mind and I think we addressed pretty much, all except the function one, and you don't have to do it all in the same visit. But I wanted to just get some feedback and reactions, is this something you could imagine using finding helpful, yeah please Dan?
» What I'd do is...
» Dr. Block: And can you just speak up and turn to the... oh there're microphones, oh how great!
» I noticed that the skills you demonstrated were very, very high order and that what you brought to bear was adaptability so you had the checklist, but you weren't really confined by it or constrained by it.
» Dr. Block: Yeah.
» So what I wonder is how do we take sort of a checklist and then get and there's a tremendous gulf between the checklist and then actually implementing these kind of things among many people.
» Dr. Block: Yeah, you know, I think that's a really good question and, you know, the way I look at it is, you know, I remember as a medical student that, you know, I used to do neurologic exams that took two hours, and were by the book and I tested every single nerve in that patient's body in a really regimented, you know, rigid way and now I don't do that, and I've learned to improvise, right, I've learned to improvise in terms of the key elements that need to be assessed with every patient and so part of it is, but I needed that structure at the beginning to figure out what I could peel away and what things really needed to stay and so I think part of it is learning a new practice, a set of, learning a set of questions that tend to be useful questions and then kind of practicing it enough and that you can learn for yourself what needs to be added, what needs to be peeled away in the individual patient. And so it's not a prescription to say these checklist words and, you know, everything is going to be hunky dory because that's ridiculous. On the other hand, the question is would having some kind of a guide like this help focus on some of the key questions and that's what we're kind of hoping. We're going to be doing a big trial looking at this checklist and we're going to learn about it, it's still very early in its development. Yeah?
» I'm just wondering if you could speak to kind of setting up a visit like this because, you know, when he was in the week before and you gave him the bad news, then there's all these things going on at the time, how much time, what about more treatment, what about my pain, what about my... you know, all that kind of happens and it seems like if you can set aside a dedicated appointment just for this type of conversation in your mind and in the patient's mind it would help to eliminate a lot of the other issues, but I'm wondering how you set that up and whether the patient's actually going to come back for that discussion, I, I can't see really setting, transitioning from that delivering bad news to making an appointment for this purpose.
» Dr. Block: See I think, I think that many patients really appreciate having the opportunity to do some thinking, to do some preparation and to know that they're going to have a whole visit to talk with you about these kind of key elements of where do things go from here and it does require them and you in a way to tolerate this sort of gap, you know, between last visit and this visit, but I think that, you know, and for some patients you have to go right in at the, you know, right after you're saying that the gemcitabine didn't work and the scan showed things are worse, you have to go right to that, you have to do it that day, but I think a lot of patients are able to do this and it's a very useful way because it allows them to do some pre-work and be more prepared for the conversation. Yeah?
» Hi there! Thank you for the presentation, okay, so what I'd like to know, what has been helpful for you, a challenge for me is working with 39, 49-year-old men with adolescents in their home and they flat out say to us, this is not an option. They say it verbally, they give it, they demonstrate it with their body, this is not an option.
» Dr. Block: What is not an option?
» To discuss advance care. We're only going to talk about treatment. What I do, I look and I listen who in the family will say we see the decline, so I'm looking for who in the family is open, that said, I'm still working with a man in his prime who is deteriorating daily, how do we address this? Thank you.
» Dr. Block: Well, you know, I think that's a really great question and I think these situations.
» You know, are our research team showed that parents who have dependent children are much more likely to have terrible quality of life at the end-of-life to go to the ICU and to receive futile treatment. Because, and it has to do with this I'll do anything, you know, not being alive is not an option, and my own view is that that's an area in practice that I think you can capitalize on and it's a hard conversation to say, you know, Mr. Jones I know that the most important thing to you is being a great dad, okay, and we're in a situation where I think you have one of the hardest dad jobs there is, which is to look at what's going on and to figure out what makes most sense in terms of the needs of your family about how we go from here and I know this is going to be very painful, but I also know, I mean, you know, and I wouldn't say it if I didn't know this, but that being a good father is really important and that your children, children do better when they are prepared, and you know, so I would, I would kind of...
» Acknowledge his values and work from there.
» Dr. Block: Yes, yeah, and I think that, you know, because the thing that's, I mean my hypothesis is from you're saying that the thing that's making it unthinkable is his children, okay and the idea of leaving his children and hurting them in that way and so I have to go right at that in some way if I'm going to be able to make any headway, and...
» [inaudible] It will be a split, it's either the focus on the children or I can't let down my parents, so it's one or the other. » Dr. Block: Right one or the other and so you have to... and my own belief is that and my experience has been that you have to go there and it's a very heavy intense conversation, but it's also about the most important thing to this father at this moment and so that it's very, it's very tender and it's very emotional and it is also, I think, often very powerful in getting somebody like this to think a little bit differently and to be willing to engage, no guarantees though.
» Okay, I had a quick question over here that, thank you for the wonderful presentation, I'm thinking this is a wonderful way to do things and you could set up for the patient let's make a visit we have to, you know, we could do some more discussing, I'm wondering would you ask then would you like someone with you for this visit or do you find it better like you did here to have the patient alone first and then another visit with family?
» Dr. Block: Yeah, great question, I mean I would ask the patient, but I normally would try to include the family if at all possible. The patient needs the support, it's good for the family to hear this stuff from me and from the patient and it's just better all around, but I think it's up to the patient. Oh I didn't even...
» Quick question. In regard to the checklist, what part of it should be done even before Mr. Jones gets the gemcitabine? So should he be prepared before he starts that treatment so the expectation will not be very high, when you have that discussion?
» Dr. Block: Oh, that's a really great question, well I think that we need to be realistic about what our treatments can offer to patients and I think and about, look we are going to be, I mean from the beginning, you know, pancreas cancer is a tough illness and we have some treatments, I wish we had better treatments, we're going to do what we can to try to help you live as well and as long as possible with this illness, but I need you to know that we have a tough fight ahead of us. Okay so that they are prepared for this, you don't want this to be, you know, we're going to do everything we can to try to find a good treatment that's going to work for you, but this is a tough illness is sort of the way I would frame it. Alright.
» Thank you very much.
» Dr. Block: Thank you.
[ Applause ]
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