Advanced Care Planning (ACP) – communicating end of life choices in advance

MD Anderson Cancer Center
Date: 11-19-12


Lisa garvin : Welcome to Cancer Newsline, a podcast series from the University of Texas, M. D. Anderson Cancer Center. Cancer Newsline helps you stay current with the news on cancer research, diagnosis, treatment, and prevention, providing the latest information on reducing your family's cancer risk. I'm your host Lisa Garvin, and today, we have two guests, Dr. Donna Zhukovsky, who is a Professor of Palliative Care and Rehabilitation Medicine at M. D. Anderson and also Dr. Katherine Pisters, who is a Professor in the Department of Thoracic Head and Neck Medical Oncology. Our subject today is advanced care planning and I think we need to start out with the basics. I think for a lot of people when they think of advanced care or advanced directives, they think about signing that form that says somebody can pull the plug. So what exactly is advanced care planning? Dr. Zhukovsky?

Dr. Donna Zhukovsky: Advanced care planning is a way that people can tell their family, loved ones, and clinicians what's important to them in their medical decision making as based upon their values and goals, so it's not about signing papers and it's not about giving up or withdrawing, it's actually about what's important to you in your care choices, particularly if the disease or the illness progresses and you're closer to the end of life. So what are the things you would like to happen within what your medical reality is and what are the things that you'd like to avoid?

Lisa Garvin: And I think we've come a long way particularly here at M. D. Anderson in how we approach palliative care and, and we've even changed things around to kind of address that so it seems like this is becoming more in the forefront of, of dealing with patients. Is that correct?

Dr. Donna Zhukovsky: Well actually, advanced care planning as it's currently exists in our country and actually worldwide has been pretty much of a failure. It's been a lot about completing forms without people understanding the reality, it's often done without any involvement of your healthcare team, and again, people often think it's about giving up and there has been no systematic inclusion of advanced care planning and care. So it has been in the media more of late with the Affordable Care Act, and again, the role is to give people choice within what's medically reasonable. Some of the decisions aren't directly about medical care per se, but, for example, if, if you're in the advanced stages of an illness or some health condition, where would you like to be, where would you like to spend your time? Would you prefer to be at home or would you prefer care that's perhaps more aggressive and, and spend your last days in, in a hospital or intensive care unit? How do you want people to remember you? So what is your legacy for your family or your children or perhaps for your professional identity? How do you want your funeral to be? Do you want a party and celebration? Do you want something else? So there are a lot of different things that people can put in their advanced care plans.

>> Lisa Garvin: And Dr. Pisters you had mentioned something when we were talking earlier about the crisis moment and it seems like a lot of these decisions are left when all of the other options are gone.

>> Dr. Katherine Pisters: So I think that reflects the crisis moment happens because you haven't had those advanced care planning discussions early on and I think the earlier we talk to patients and their families about these sorts of things, the better and more smoother it is for everyone. You get in a crisis when something unexpected happens and the family doesn't know what their loved one wants or the loved one hasn't communicated with the medical staff, what you want and so things happens and you may come in the morning and they're like... Wait, you know, what are they doing in an ICU? They never would have wanted this and then that's just, that's just a bad memory and a bad time for everybody. So I think that what this whole initiative about is trying to get these discussions to happen earlier on and to, to know what people want, and it just makes everything so, so much better because I, I think then the family feels like well we're following what they wanted to do, not, you know, even in my own family when we were faced with a situation like this with my mom, it was very interesting to me that my sisters and I had very different ideas of what our mother wanted and, of course, I was right and they weren't. But, you know, it's really good to talk about it and so it's really good for the patient to talk about it.

>> Lisa Garvin: But how, how is that subject broached in a clinical setting? I mean is it up to the doctor, is it a social worker? I mean, how does that even come up?

>> Dr. Katherine Pisters: So I think what Anderson is trying to do is to make this more systematic where you know you provide a framework for clinicians to work with. It, I think in the past it's been sort of random and it may not be, you know, the social worker may talk about it and the clinician may be upset that the, the whole thing has been broached with their patient and they don't think it's appropriate and so there's a lot of misunderstanding and, and I hate to use the word ignorance, lack of knowledge about it and so I think if, if a framework is provided in the system and everybody can see it then it'll make it a lot smoother for patients.

>> Lisa Garvin: And Dr. Zhukovsky there is an advanced care planning initiative underway here at M. D. Anderson starting shortly. Can you tell us more about that?

Dr. Donna Zhukovsky: I would love to, but first if it's okay, I'd like to weigh in on some other things that Dr. Pisters said and I think her personal experience speaks to what the data show us, what the research shows us, people think that their loved ones know what they want and the data shows that actually they don't that family members, loved ones are, are not, are not knowledgeable about what, what patients would like. There're a lot of studies to show that. People also think that talking about these things will cause more distress, stress for patients and families and there are numerous studies that show that in fact the distress levels don't go up and for those patients who do go on to die that it actually decreases the burden and makes easier the bereavement process. People who haven't had these conversations have a long, often have long lasting negative memories and, and emotional burden and more complicated bereavement. And in terms of who brings these discussions up as, as Dr. Pisters said right now it's kind of random. The literature shows that patients want their physicians to bring it up and they want their physicians to bring it up ideally in an outpatient setting whereas the physicians are waiting for the patients to bring it up and that speaks to some of the lack of systematicity. What we are attempting to do at M. D. Anderson and there are three co-chairs to this initiative, so it's a multidisciplinary initiative not relying just on medicine or just on social work. The other two co-chairs are Margaret Meyer, Director of Social Work and Ad Interim Chair of Chaplaincy and Dr. Susan Gaeta of Social Work and in our team we have diverse representation from many different disciplines in the institution as well as patient representation, so it's been a thoughtful process. We'll be starting in one of the outpatient centers with an identified group of patients where their physicians think that they might be at risk for dying not necessarily right away, but in the medium term and so we'll be starting by having these conversations, we'll have a systematic process with the physician introducing the concept, then the individual with their family member will be referred to what's called an Advanced Care Planning Facilitator who's been specially trained and certified in how to conduct discussions about values and goals and then eliciting the patient's understanding of their knowledge, the physicians will fill in any gaps in the medical knowledge and then will go on to articulate some plans. And in this way, we'll have again multidisciplinary representation from nursing, medicine, social work where there won't be an undue burden on the physician in terms of time constraints, which are priority for everybody. So if the physician wants to participate more, he or she can, but if not, there's just a modest additional investment of time, which in the long-term we anticipate will save time because there'll be fewer crisis moments, fewer surprises, and less conflict and we'll be measuring and evaluating all these things, so to, to see in reality if this is working out the way we expect it to.

Lisa Garvin: And as you select the patients I'm thinking that some people are probably in denial no matter what the situation. Do you have to carefully pick them based on psychological profiles or what sort of criteria, because obviously some people aren't going to take bad news well at all no matter when you introduce it to them? So is this plan based on individual reactions you may get from patients or?

Dr. Donna Zhukovsky: It will have eligibility criteria so when patients meet certain conditions in their disease or their prognosis, the referral will be generated. We're starting out with a relatively small group of patients in order to test the system and make sure that it's working well. Patients will have the option to decline, we're offering them an opportunity, and again, we don't anticipate much distress, based on other people's experiences elsewhere.

Dr. Katherine Pisters: But what I would say is the folks who you think are going to be the least wanting, wanting to do it the least are the people who need it the most because if they're in denial and they don't want to address those issues, we're, you're heading for an even bigger crisis down the road, so the sooner you start talking about those things and getting everybody on the same page and knowing what the person wants and what their wishes are then all of that's going to get clarified and so why put it off to some horrendous, you know, middle of the night issue as opposed to doing it in daylight when everybody is feeling well and people are hopefully more rational.

Dr. Donna Zhukovsky: Absolutely, and again these, this is information that people ideally should have in terms of making their treatment decisions with their clinicians, so we're not going to be going, the facilitator won't be giving them new news, this is information that they already have from their oncologist and their treating team and if there're gaps, they redirect it. So this is all information that should, should be there to begin with.

Dr. Katherine Pisters: I think the other thing that's really going to be great about this is that it, it provides maybe for some physicians who didn't feel comfortable talking about these issues a format to talking about it, and, you know, I always think that knowledge is power and that is true for everybody and it's really true for the patients. I don't, you, how can you make an informed decision if you don't understand whether your disease is curable or it's not curable and what the goals are and what, you know, you've just got to understand the whole process. You know, we live and breathe cancer all the time, but then when you've just been diagnosed you're scrambling to understand and you're overwhelmed and it'll just provide another opportunity to educate patients about, you know, what it's all going to be like and what the goals are and I think bring things out that maybe would not have been brought out earlier on and will be really helpful.

Lisa Garvin: And how do you anticipate this will help you as a clinician in dealing with your patients as a new initiative?

Dr. Katherine Pisters: So for me, you know, I, as you can I guess the reason why I'm here is because I tend to talk about these things a lot with my patients, but I think it'll be terrific in terms of providing a framework and having resources there with other disciplines that will, you know, help complement what I'm already doing with my patients. I also think on our inpatient service, you know, I cover patients for multiple doctors, and so if we all have followed the same kind of recipe and have flushed these issues out ahead of time that will just make the inpatient experience better for patients and for Dr. Zhukovsky and her colleagues who we often call when we get into the crisis mode. You know, I think it'll, I think it'll really help in that setting as well.

Dr. Donna Zhukovsky: Key to this process is actually transparency so that there'll be easy avail, avail easily available and accessible information in the electronic medical record so that people won't be going back and rehashing the same things with people that they already discussed. The information will be clear and it'll be easy for everybody to share and it offers bedside nurses a way to, the new documentation tool when it'll be available, will offer bedside nurses a way to communicate information that they don't have right now, for example, it includes chaplaincy and social work and many different disciplines and it'll be in, in one easy place for people to access. We're partnering with a company called Respecting Choices, which is known for its advanced care planning work and they've worked nationally and internationally, in fact, and so they'll be helping with the training process for the Advanced Care Planning Facilitators and with parts of the implementation process.

Lisa Garvin: So what is your, what is your endpoint in this initiative? What do you hope to resolve or, or create?

Dr. Donna Zhukovsky: We hope again for there to be a systematic approach to this so that there aren't lost opportunities for people and we really want, I mean really the goal is for people to have a better match of the care they desire for the care they ultimately received within the context of what's medically realistic.

Lisa Garvin: And could this be a, you want, I guess a repeatable algorithm that you could provide, that other groups could probably use as well?

Dr. Donna Zhukovsky: Well I, I think it needs to be customized to each organization or environment because they have different personalities and means, but we've designed a systematic approach that we'll try out and then we'll refine based on feedback from the clinicians, the patients, and the families and we'll be then moving on to a second pilot site to extend the program and then to a third and then from there we'll ideally broaden it to the rest of the institution, and hopefully to the satellite locations.

Lisa Garvin: Any final thoughts from you Dr. Zhukovsky?

Dr. Donna Zhukovsky: Well, I think we really appreciate this opportunity to talk about such an important subject and hope that people will keep an open mind so that they have all the opportunities that they, that they can have and the way that they want them.

Lisa Garvin: And Dr. Pisters?

Dr. Katherine Pisters: She said it all.

Lisa Garvin: Great. Thank you very much for being with us today.

Lisa Garvin: If you have questions about anything you've heard today on Cancer Newsline, contact ask MD Anderson at 1877-MDA-6789 or online at Thank for listening to this episode of Cancer Newsline. Tune in for the next podcast in our series.