Using Video to Facilitate Shared Decision-Making in Palliative Care

Angelo Volandes, MD, MPH

Following the American Society of Clinical Oncology (ASCO) Palliative Care in Oncology Symposium, held October 9–10 in Boston, we are speaking today with Dr. Angelo Volandes, an internal medicine physician in the department of medicine at the Massachusetts General Hospital, who does research on advanced care planning and palliative care. He spoke at the symposium about using video as an aid for patient decision-making.

 - Interviewed by Anna Azvolinsky

Cancer Network: First, could you tell us the types of patient decision that these video tools can facilitate in the context of palliative care?

Dr. Volandes: I think patients with cancer have a lot of decisions at various decision points along the trajectory of their illness that they really need to think about. I think at the time of diagnosis, it is important for us as providers to talk with our patients to ask them questions like, “You’re not sick right now, or you don’t have a serious illness, but in the event that you did, what sort of medical care would you want from us?” I think it’s important to introduce these concepts early in the course of an illness so that we don’t have these conversations at the late stages when patients are critically ill and probably thinking about other things in addition to advanced care planning. I think it’s a disservice for us not to have these conversations early and often.

Cancer Network: Could you tell us a bit about these video tools, and how they can help with patient decision-making?

Dr. Volandes: I think today we live in a visually literate society. A lot of our patients come in with information as well as misinformation about what some of the options are for medical care. I had a patient a few years back who had advanced cancer and started talking about some of the interventions, she was thinking about the latest episode [of a TV show] where the reality is not what we see in the hospital. So in addition to a good conversation, I think it’s important that we as providers have tools to empower patients.

I will give you an example. I think a lot of times when we introduce the concept of palliative care to patients, they think immediately about end-of-life and hospice care and that they are dying, and I tell my patients all the time that palliative care is not just for patients who are nearing the end of life or who have a terminal illness. Palliative care is a group of experts who help you coordinate your care, communicate what is important to you, treat your symptoms, your pain, but help make sure that you are at the center of your care.

A lot of my palliative care colleagues sees patients who may be cured or patients who are in the advanced stages of an illness. So sometimes we have to provide patients tools like videos that explain to them the truth about some of these interventions and some of our consults and colleagues.

I think videos help empower patients. They show them often what we talk about as clinicians, but also give patients the information they need to make sure that they get the right care at the right time but also on the patient’s terms.

Cancer Network: Do these video aids help to improve both communication between the patient and his or her physician as well as communication between the patient and his or her family?

Dr. Volandes: I think that’s a wonderful point because these tool are not just for improving communication between doctors and patients, which we know they do, but also between patients and their loved ones. We’ve conducted many trials now at Massachusetts General Hospital, as well as other comprehensive cancer centers around the country, where we have shown that in addition to a good conversation, if you have a video that helps a patient communicate what is important to the to their doctor, the communication between the patient and doctor is vastly improved. They have more information, and they have a better idea of the framework with which to understand their illness, but also in our studies, what we find is that when patients actually understand their options, they are much more likely to talk to their loved ones about what is important to them.

And so I encourage patients to not only use these videos for when they want to talk to their doctor, but also when they want to talk to their families. We have three videos that are freely available online. One that I tell all my patients to watch is on YouTube and available at theconversationbook.org, and it really is a general video to explore with patients the types of questions they need to ask. For example: “What is a good day for them? If they weren’t able to do the things that give them joy and happiness, what are the sorts of things they would want their doctors to focus on-quality of life or quantity of life?” And then it goes over things that they need to discuss with their family: “Who is going to speak for you when you are not able to speak for yourself? What is an advanced directive? What is a surrogate? What is a POLST or MOLST form and when should I fill one of those out?”

So I think if we have a short video that all patients and families can go to, we can do a better job in healthcare at making sure that we follow the patients’ wishes when they are most informed.

Cancer Network: Your book that you just mentioned, called “The Conversation: A Revolutionary Plan for End-of-Life Care,” is about how patients can take control to receive medical care that is best suited for their situation and on their terms. Can you tell us one or two of the ways that oncologists who do not specialize in palliative care can have better communication with their patients about the patients’ needs and to improve their quality of life?

Dr. Volandes: I will be the first one to admit that these conversations are really, really hard. They are difficult. By the time I completed medical school, residency, and three fellowships, no one actually sat down with me to make sure that I could have the conversation. I had to show competency running codes, doing a lumbar puncture, inserting central lines, but not a single senior physician sat down with me to say, “Hey Angelo, do you know how to have a conversation with a patient who has a serious illness?” So I get it. I think we do a poor job of training residents, fellows, future oncologists on how to have the conversation.

So the reason I wrote the book, which is called “The Conversation,” is to help providers on how to talk about this difficult subject. So in the book I talk about seven patients of mine, three of whom had cancer, and what it was like to take care of them, how I broached the conversation, where I went right, but also what did not go so well. And then at the end of the book I give appendices to help providers with the questions they should be asking and how they can help empower patients.

Along with the book is the free video that should help both patients, providers, and family start the conversation. And I am the first one to say that this is not a one-time conversation-It’s a conversation over time. If you’ve just been diagnosed with cancer, I think the conversation we start at that point, there’s a conversation when a patient has a metastasis or a recurrence and now it’s a very different conversation. The book walks people through what are the questions to ask, how to ask them, and how to make what is a difficult topic that much less difficult.

Cancer Network: Thank you so much for joining us today, Dr. Volandes.

Dr. Volandes: Thank you! Thanks for having me.