Thomas J. Smith, MD: Guidelines for Palliative Care and Doctor Communication from ASCO 2011
Thomas J. Smith, MD, FACP is a Massey Endowed Professor of Palliative Care Research & Medicine from Virgina Commonwealth University-Massey Cancer Center. Dr. Smith gives an overview of the guidelines for hospice care in the United States as well as some insight into best practices for doctor communication around the subject.
The Group Room at the 2011 American Association For Cancer Research Annual Meeting was made possible, in part, by:
VIDEO TRANSCRIPT
Selma R. Schimmel, Founder & CEO, Vital Options International:
This is Selma Schimmel at the 2011ASCO meeting in Chicago, and we’ve been speaking to many physicians about some of the innovative therapies and breakthroughs and data that’s being presented at this meeting. And we’re going to expand our discussion now into an area of oncology care that sometimes we don’t talk about, and we certainly don’t talk about enough. And we’re going to introduce you to that subject now with Dr. Thomas Smith: Professor of Medicine and Palliative Care Research, the Director of the Thomas Palliative Care Unit at Virginia Commonwealth University, Massey Cancer Center, Richmond, Virginia. Hello, Dr. Smith.
Thomas J. Smith, MD, Med. Director, Thomas Palliative Care Unit, VCU Massey Cancer Center:
Hello. Thank you for inviting me to be here.
Selma R. Schimmel:
What are the guidelines for hospice because I have heard patients say you have to be within a certain… death has to be eminent. You have to be within a certain, like 6 weeks, and I don’t know how you can tell exactly, you know, someone may live 8 weeks or several months yet. So, are there really stringent guidelines to hospice care?
Thomas J. Smith:
There are recommendations and guidelines for hospice care. There are also recommendations for when you should discuss things like advanced care planning. Those issues, which I just mentioned, when someone is diagnosed with a disease from which they’re likely to die within the next year, the National Conference of Cancer Center Network recommends people should have a discussion with their physicians and nurses about advanced medical directives and advanced care planning when they have less than a year to live. When people have a disease, when they’re likely to die within a year, that’s the time to bring it up; not when they have 2 weeks left to live, or 2 days, or 4 days. In one of the most recent studies done in Boston of lung cancer patients, the average person in the control arm spent 4 days in hospice, that’s hardly enough time for hospice to get to know the patient, much less talk with them about their life issues, evaluate the family for prolonged grief and bereavement; so we’re asking people, asking doctors like me, oncologists like me to have patients talk with hospice when they have 3-6 months left to live, and to bring it up as something that’s part of routine cancer care for diseases which cannot be cured. The hospice guidelines are not as strict as most people interpret them to be. The hospice recommendation is that you have to have a 50/50 chance of dying within the next 6 months, or an average survival of 6 months from your illness. That’s relatively easy to categorize patients into that. Any physician who says, ‘well I can’t predict’, isn’t really up on their information. Anybody with advanced malignancy, anybody with a solid tumor that’s come back like breast cancer, lung cancer, colorectal cancer, pancreas cancer, that’s come back, anybody who has a high calcium level, anybody who has fluid in their abdomen or fluid in their chest, those are all trigger points that a doctor like me should say, ‘hm, have we had the talk about what it is that you want to do with the rest of your life?’
Selma R. Schimmel:
How do you bring that subject up? How do you broach that with patients? You’re comfortable with it, many medical oncologists may not be so comfortable.
Thomas J. Smith:
I’m comfortable with this because I’ve had some training and I have some interest. Probably, half of oncologists are not comfortable with it. They don’t really show up for training courses so I’m not sure that this is a trainable skill, but I think it is.
Selma R. Schimmel:
It must push issues… a human being… a physician is a human being, which means that human being has to have some degree of their own comfort with the d-word. We don’t know what family issues they carry, what past experiences they carry with death. It has to color their own perceptions and their ability to communicate about the subject. And also, I fear when I hear patients say, ‘when the going got rough and I was past cure my doctor disappeared, I didn’t see him or her anymore.’ And that abandonment is devastating.
Thomas J. Smith:
That’s really tough on patients, it’s tough on families and I think, eventually it’s tough on the doctors and nurses too because they don’t have any sense of closure or pleasure that they’ve helped somebody adapt to a really difficult circumstance. The way ASCO now recommends that we talk about these very difficult issues is to bring it up early and bring it up often, that it’s no mystery who’s likely to die of their illness. But knowing that patients want us to discuss these issues we should say on our very first or second visit, say ‘we’re going to do our very best to prolong your life for as long as possible and preserve the quality for as long as possible, but there may come a time when medical science doesn’t have a way to treat your illness and make you live either longer or better. For right now, we’re going to give you drug x, y, and z and hope to prolong your life but at some point it may change.’
Selma R. Schimmel:
How do we help patients draw the line to know at some point it no longer behooves you to continue trying more therapy? That’s such a slippery slope.
Thomas J. Smith:
It is. Again, the good news is that this doesn’t have to be an either/or situation. The only way it’s an either/or situation in the US is, typically you can’t get into the hospice benefit until you stop doing treatment because treatment is expensive and you’re hospice director gets paid $165/day to take care of you and that doesn’t cover transfusions or radiation therapy or chemotherapy therapy. That’s really the only major, major barrier other than us.
Again, most patients really want to have these conversations and yet, in one big study at 5 US centers only 37% of patients and families remembered a physician ever discussing impending death with them. And half of all lung cancer patients, all of whom die from their disease, if it’s metastatic, half of all lung cancer patients hadn’t discussed hospice 2 months before their death; that’s modern failures on our part to bring up these words. So, I mentioned that you can say at some point there may not be a way to treat your disease and you go through first line of treatment, and second line of treatment, and then you can say, remember the discussion we had when you were first diagnosed and came to see me, I said, ‘at some point there may not be a way to treat your disease that’s going to make you live longer or live better, we’ll still be here to take care of you and help you but now may be a time to start thinking about treatments that don’t involve chemotherapy.’
Selma R. Schimmel:
On a psychological level, when you have to confront that with a patient, what goes on usually with the patients and the family members? There has to be some adjustment phase to accept the new reality.
Thomas J. Smith:
It’s hard on everybody and doctors will say I don’t want to do it because I’ll make the patient depressed: lie number one and falsehood number one. In actuality, if you have the discussion, patients are less likely to be depressed and less likely to have anxiety; even more so for their families and caregivers because they can plan. Falsehood number two is, it’ll take away their hope. Our studies show that even when you sit down with people and write out what their prognosis is, ‘the average person is going to live about 3 months in your situation and there’s no chance of cure’, and then give them some transition points to help make the transition from somebody going for cure to not, people’s hope goes up, it actually goes up. It’s really us, it’s us as doctors who find this so difficult to have the discussions that we don’t do it.
Selma R. Schimmel:
Hope is very fluid. What you hope for at the beginning of your diagnosis may be very different from what you hope for later on as you progress in a disease. You can hope for many things- you can hope that you have your dignity, you can hope that you don’t have pain, you can hope that you can get closure and that you can say to the people that you love, ‘I love you’ and express your feelings and maybe reconnect with people that you have outstanding issues with, and that’s where, to me, hope never really goes away. It just changes.
Thomas J. Smith:
You asked me how I bring these issues up and I always ask 2 questions first: ‘What do you know about your disease? And what do you want to know about your disease?’ And that lets me identify the 5% who say, ‘well, I’m really not interested in finding out what’s going to happen, but tell my daughter.’ For almost everybody else, though, they’ll say, ‘tell me everything that’s going to happen to me’ and that lets me have an opening to really start to explore these. So I can ask somebody ‘what is it that you hope for?’ And if they say, ‘we’ll I hope that I’m going to be cured of my lung cancer’ and I can say, ‘well we all would, I wish it were different but your cancer has grown on the last 3 different treatment regiments and there really isn’t a good 4th one. And the American Society for Clinical Oncology and the National Conference of Cancer Center Network recommend against taking chemotherapy but switching more to hospice type care. Tell me how that sounds to you.’ It’s asking open-ended questions that is hard for oncologists, because if we ask the question, we have to listen to the answer.
Selma R. Schimmel:
Thank you, Dr. Thomas Smith: Professor of Medicine and Palliative Care Research, Director of the Thomas Palliative Care Unit, Virginia Commonwealth University, Massey Cancer Center, Richmond, Virginia.
Thomas J. Smith:
Thank you.
END OF VIDEO