Home / Spotlight Interview / Improving end-of-life care In Pennsylvania

Improving end-of-life care In Pennsylvania

By Jeffrey Barg

David Barnard, Ph.D.
David Barnard, Ph.D.

David Barnard, Ph.D., director of the Institute to Enhance Palliative Care at the University of Pittsburgh, is co-chair of the Report and Recommendations Subcommittee of the Task Force for Quality at the End of Life in Pennsylvania, whose final report was released in February.


PND: What was the genesis of the Task Force for Quality at the End of Life in Pennsylvania?

DB: The governor was alerted to the results of a report that generated a report card evaluating states on various measures of preparedness to provide good end-of-life care. Pennsylvania was very poorly rated on a whole host of measures. The report mentions things having to do with availability of palliative care specialists, hospitals’ use of advance directives and living wills, the ways laws are written that regulate physician prescribing of pain killing opioid drugs, and several other measures. Pennsylvania overall received a ‘D’ and the governor took this up with Department of Aging Secretary Eisenhower and his Office of Health Care Reform and said, “We need to put together a group to make recommendations to me.”

PND: What did you find are the most pressing problems and unmet needs within end-of-life care in Pennsylvania?

DB: Most people, when asked, would say, “If I’m dying, I want to be with my family, I want to be with familiar people around me, I’d like to be in my house. I don’t want to spend the last part of my life in a strange environment like a hospital or nursing home with a lot of technology around me.” But in order to make that a reality, a number of things have to happen, and among those is thinking about it in advance. A major item that is on our agenda is to promote and foster some thinking about these issues, and it’s hard to get people to pay attention to what many of us would say is kind of a grim subject. Now, to get those conversations to happen you need a couple of things which our report addresses. One is a public awareness initiative that encourages people to think about these things. Second is some education in the health professions that helps people learn some of the skills to promote and carry out these conversations, which doesn’t always come as second-nature to doctors. And third, there needs to be some reimbursement for the time that it takes a doctor to have this kind of conversation. If you look at the way doctors are paid, they are paid either for doing procedures or they’re paid as a kind of lump sum for people who have a particular diagnosis when they’re in the hospital. The hospital is paid according to the diagnosis the patient has and then they get a lump sum regardless of what you actually do for the patient while they’re in the hospital. Those two payment mechanisms – the procedure-based payment and the lump sum per diagnosis payment – both create disincentives for doctors to spend time simply engaging patients in this kind of conversation. So, a very useful reform would be to pay doctors for the time they’re taking on these kinds of advanced planning discussions.

The second thing that flows out of this is that it’s all very well and good to talk about giving people options for care that would emphasize support for their family and pain and symptom management and this kind of thing. But if the professionals who are going to be depended on to provide these kinds of services don’t know how to do it, it’s kind of an empty promise. Another important part of the report was to address this gap between what the state-of-the-art is in things like pain management and effective psychosocial care for people, and what actually is delivered by people who are trying to give this kind of care. There’s a lot of data in our report that shows that people with cancer, for example, or people in nursing homes, mostly elderly people, suffer from a significant degree of pain even though we have all of the knowledge and technology that we really need to treat people’s pain quite adequately. One of the things that we’re calling for in the report is a much more aggressive approach to the improvement of health professionals’ education in pain management and a number of other aspects of good palliative care.

PND: Are there any legal obstacles to the use of pain medications?

DB: We’re in pretty good shape there. The medical board in Pennsylvania and even the attorney general at one point a few years ago issued a very constructive statement saying that aggressive pain management, as long as it follows accepted medical guidelines, should not be viewed as an abuse of opiates and doctors should not feel in jeopardy if they’re following accepted guidelines. But that message needs to get out much more aggressively.

PND: The report alludes to the difficulty that funding for hospice care usually involves the cessation of life extending care. Could you speak to that?

DB: It is an unfortunate way in which mechanisms for payment have tended to drive the services that are available to people more than the actual needs that people have. And it is true that most people want to be as comfortable as possible and when they die, to die with the most physical, social and psychological support that they can have both for themselves and for their family members. They want all those things, and that’s what palliative care is all about. But they also want to live as long as possible. They usually don’t want to give up as long as there’s any realistic chance that their life can be prolonged, so they can continue to enjoy the things that make life meaningful to them in the first place. We’re talking about people who are sick with conditions that are chronic and incurable but don’t necessarily have a very clear pathway to death, such as chronic neurological conditions, lung disease and HIV and AIDS. The notion is that you would only switch on the payment spigot for supportive hospice and palliative services once you clearly see that the patient is going to be dead within six months, which is how the hospice benefit for Medicare was written. It’s very hard to make those kind of predictions. It’s hard scientifically, and from a standpoint of interacting with the patient and the family, if a physician needs to tell the patient in order to get the services that they really need that they are imminently dying – that’s kind of a downer. And it’s unfortunate that people have to make those kinds of certifications in order to make service available.

Because it’s hard to predict scientifically and because there’s an understandable resistance among both doctors and patients to think about the patient in that way, referrals to this kind of service are much slower and later than would be desirable. That’s also been the economic problem for hospices. It’s important to make a distinction between hospice as a mechanism for providing services and palliative care as the general term for the services that the hospice is providing. I think it’s useful to think of palliative care as the generic term for all of the psychological, social and physical symptom management types of support that people need, and hospice being a particular vehicle for delivering those services. The way the hospice vehicle has been constructed by Medicare, it requires this certification that patient have a life expectancy of six months, that they not be using the benefit to pay for life prolonging therapies and so forth. With that distinction in mind, ideally you would be receiving palliative care at the same time as you were dealing with your disease because in fact we’ve had some peculiar unintended effects of writing the legislation the way that they did, and a lot of insurance companies actually have followed for their patients under the age of 65 the same blueprint that Medicare drew up for people over 65. The problem is that, if you do come into a hospice and you have certain needs that are related to your underlying disease that the hospice benefit doesn’t cover, if you want it under the existing system, your hospice would have to pay for those additional treatments with the money they’re getting from Medicare or the insurance company to give you hospice care. The result is, a lot of the hospices would say, we only admit to our hospice patients who we really are absolutely sure are not going to want those extra services. The irony is that in many cases people who are in hospice actually have less need for hospice than people who are not in the hospice because the hospice has got people who are pretty straightforward to take care of. They have symptoms and discomforts and needs – they certainly do – but the person who is equally far along in their disease but is also, say, taking cancer therapy and is therefore suffering the side effects of chemotherapy – that person might have even more symptoms, might be even more uncomfortable. Their family may be going even crazier with all the stresses and strains, and they’re not getting the palliative care.

PND: What sort of education in end-of-life palliative care should all physicians have, and what is the specific role of a physician who specializes in palliative care?

DB: As far as the general education goes, the American Medical Association has put together a curriculum called EPEC which is designed to give that basic knowledge. It includes basic communication skills, both in the terms of giving bad news to patients in a compassionate way and not necessarily hope-killing, and also having conversations about the advance care planning. Too often, those conversations are of the following variety: “If your heart were ever to stop, would you like us to do everything possible to start it up again?” Or what happens is people say, “I’m going to give you a list of medical treatments. Tell me which ones you want and which ones you don’t want in the case that you were very sick and couldn’t speak for yourself.” Most people wouldn’t have a clue as to what they want. And probably what they’d say is, “Well doctor, I’d want anything that you think would help.” So, we need to help doctors move beyond that kind of conversation and ask people to think realistically about qualities in their life that are most valuable and important to them, the kinds of risks they personally believe they would like to run in terms of trying various forms of medical therapies in a situation where we might not be able to predict in advance whether it’s going to help or not. Is he or she the kind of person who’d want us to err on the side of too much treatment or little treatment? And third, “Who can we speak to if you can’t speak for yourself. And by the way, does the person really understand your values and goals, and is there any way that I as your doctor could help, perhaps have a conversation with the two of you together?”

EPEC also includes the skill of assessing what they call the whole patient. We’d like most doctors to recognize that besides the disease and the illness, there’s also the impact on the patients’ daily life of having the illness. Whether the doctor him or herself, or staff such as nurse practitioners or social workers does this isn’t quite so much the problem as somebody needing to really give the patient an opportunity to draw a picture of what is going on in his family and life as a result of being sick, because if you don’t know what those issues are it’s very hard to make recommendations to ease them. I think it also is very important to understand how to assess pain and physical distress. People sometimes need a little coaching by their doctor to feel that it’s appropriate to complain because a lot of people like to feel they’re tough guys. To make it possible for people to really give a good history of their pain or some other aspect of physical discomfort is a skill and is important. Doctors ideally would be comfortable with prescribing the full range of opioid and non-opioid pain relievers, would know their indications, would know their side effects, would know their alternative routes of administration. Most doctors who go through basic medical school know very little about this. Many doctors are affected by the same misconceptions about opioids that lay people have in terms of addiction, and if you take them too soon in the course of an illness they’re not going to work anymore – and then you won’t have anything left. There’s also recognizing patients’ negative emotions such as anger, fear and sadness. There’s a kind of myth out there that if you talk seriously with a patient, they’re going to break down and have an emotional meltdown in your office and you’re not going to know what to do with them. So there’s a tendency to kind of skip over any topic that might be tinged with these feelings with the result that many patients go away feeling that their doctor never really quite understood what they’re going through. There are programs that are good in helping physicians recognize strong emotions in their patients and be able to respond helpfully – not necessarily waving a magic wand and making the patient feel everything is honky dory, because that’s not going to happen – but to really show the patient that the physician is a sympathetic listener and that they have an ally in the course of this illness. Finally, I think it’s important to make physicians aware of the broad range of supportive professionals who are available to collaborate with them in the care of critically ill or dying patients. That means letting them know more about the indications for referral for hospice or palliative care, the kinds of social services that are available, and so forth.

What’s the role for specialists in palliative care? I think as with cardiology or nephrology or anything else, there’s always a group of patients the generalists bump up against whose symptoms are more complicated than they’ve ever seen before or whose family situation is really complicated and they need extra help, so the palliative care specialist certainly is available to help with those kinds of patients. Sometimes it’s a matter of time – where even doctors who are skilled just don’t have enough time to provide the whole family with that kind of support, and so you want a team that’s used to doing this to be available to help you out with that. Palliative care specialists have an educational role within the profession.

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