A Conversation with Dr. Greg Miller

Q: How has medical technology changed the way we die in America?

Dr. Miller: Well, over the last thirty years, technology in terms of medicine has changed the way people are cared for. People are living longer because of medical interventions. For example, heart disease used to be a significant killer. But now we can diagnose it early, and between medications, surgery, even transplants, people don't die immediately from their heart disease. They eventually will die of their heart disease, but it's after a chronic disease process. So instead of dying within a short period of time, people die after years and years of a chronic disease process.

Q: So now is technology driving the way we die, instead of using it as a tool, is it now something that's mandating how we die?

Dr. Miller: I'm afraid that's where we are right now. Almost everybody has a sense that modern medicine can cure us, no matter what it is. Our medical education is highly technical. There's so much information that's available now that we really focus on the scientific basis of medicine, which is wonderful, and necessary, but it's changed our focus. We tend to focus on organ systems, on hearts, on lungs, on kidneys, and step back from the overview of the patient and the family.

Q: Is that changing now? Are we looking more at the whole patient in the dying process?

Dr. Miller: Well I hope so. There is more attention being focused on end-of-life care. We're trying to have a quality, good death, and that's new. Over the last 10 years we have a new medical specialty, palliative medicine. Palliative medicine is an interdisciplinary approach to disease management for someone who has a life-limiting process. It focuses on not only the physical symptoms, but all the other activities that surround someone with chronic disease–their spiritual, religious, family, and social milieu so that there are no untreated symptoms.

For example, in our hospice we're caring for a several patients who are young women, and they have young children. And physically their symptoms are managed. They don't have pain from their cancer. But you can imagine the pain that they have trying to conceptualize the loss of their children and not being able to raise them. And the dynamics that exist in the family, the new burden on the surviving spouse, those issues are critically important and need to be addressed.
So, with palliative medicine, we're starting to focus on more comprehensive care-dealing with comfort and symptom management instead of focusing on curing an organ system.

Q: What is the clear difference between palliative medicine and hospice?

Dr. Miller: Palliative medicine describes an interdisciplinary approach to symptom management. And it can occur at any point along the disease process–not just at the end-of-life. Hospice, in this country, is a federally regulated and mandated program that is defined by someone being in their last six months of life. Palliative care occurs in hospice–what goes on is the same. It's just the definition by Medicare regulations that it has to be in the last six months of someone's life.

At some point though, the goal is to have palliative care available for all of someone's life when they need it. In an ideal world, palliative medicine would commence at the time the diagnosis of a life limiting condition is made. And the interventions would be minimal during the first-basic symptom management; it would be education-talking about things that will be necessary further down the road such as advanced directives, a living will, or the durable power of attorney. These are things that need to be discussed when people are healthy and can communicate and share their thoughts. Then as the disease progresses, the role of palliative care becomes much more important and the curative approach declines in significance. So, there should be a transition over time and then palliative care would be constant at the end. And we really wouldn't need to use the hospice word, because it would be a natural blend.

Q: How far away are we from seeing that in place?

Dr. Miller: I think it's going be quite a while. The model exists in other countries and it's very effective. I think there's some economic barriers that need to be crossed first to recognize palliative medicine as a specialty and to allow people to get reimbursed for providing that care. And to have other health care professionals recognize it as a specialty that they work with. And then to expand the hospice benefit. For example, in England the hospice benefit is always available. I think we're starting to move that way, but it's going to be a long evolution.

Q: How are we in Utah in terms of the rest of the nation?

Dr. Miller: We're at the very a start of that process. The Huntsman Cancer Institute has established an integrated palliative medicine program under the leadership of Dr. Sharon Weinstein and that's just beginning. And there's all sorts of plans for that in the future, hopefully even to establish a fellowship so that we train physicians in Utah to do palliative medicine. We're starting to do some work at LDS Hospital with Dr. Sarah Goodlin and Helen Rollins-doing a supportive and palliative program there. It's in its infancy.

Q: As a palliative care physician you focus on treating pain. How well do we do in Utah on pain management?

Dr. Miller: Well, pain is the number one underdiagnosed and under treated symptom in the country. And unfortunately, Utah is no better, nor worse than the rest of the country. And it's really of epidemic proportions. Certainly, if we had an infectious disease that was as unrecognized and as untreated it would be a public health crisis. But it's not getting that kind of attention. The reasons for it are many. The barriers come from health care professionals not receiving education or not having the time to really explore an adequate pain history. Also, there are concerns about utilization of opiate medication; that they will get looked at by the regulatory bodies. There are some fears of over prescribing medicine; that they will get looked at by regulatory bodies. There's an equal barrier present in the public, and because of their concepts of opioids and our awareness of drugs in this country. Often people think that using pain medicine is like taking drugs, and the connotation there is not a positive one. And so many are unwilling to take these very safe and very effective medications because of irrational or uneducated fears. People are afraid of addiction. But that's a myth. People confuse addiction with physical dependency. The appropriate utilization of pain medicine does not cause addiction.

Q: The fear of pain or loss of dignity can sometimes lead people to contemplate suicide. How do you address those fears?

Dr. Miller: People have fears of dying. They fear uncontrolled symptoms whether that be pain, nausea, vomiting, shortness of breath, and that's a rational fear. Because many people have an image of some somebody who died an ungood death. But those symptoms are fairly easy to take care of with the interaction of the hospice team, because we can control every symptom. And hopefully, if you take care of those symptoms then the suicidal thoughts aren't present. Of course, doctor assisted suicide is illegal in Utah. And it's something that I, as a professional in the American Academy of Hospice and Palliative Medicine, have taken a very strong stance on that we don't think suicide is an option. And we feel that the reason it's there is, not only because of Dr. Kovorkian's visibility, but because people don't get good symptom management.

Q: Do you ever have cases where you can't control the symptoms?

Dr. Miller: We certainly have individuals that have symptoms that we can't manage completely with our normal bag of tricks. And for those symptoms we will use sedation. Prior to that point, with all of our hospice patients we discuss what options we have to control symptoms. And talking about total sedation is an option that we talk about. And people react to that differently over time. Some people want to go out screaming and kicking. They want their eyes wide open and they want to face death straight in the face when it comes. And occasionally that happens. It's hard to watch, but occasionally that happens. And that's again allowing the individual to direct it, not what we want, but what they want. The majority of other people want their symptoms to be managed. But there is a smaller percentage of people who suffer from not just physical symptoms but emotional, spiritual, and existential symptoms. They want those symptoms to be treated too. And if after we bring in all the professionals, the spiritual counselors and the social workers, and if we can't deal with those issues, providing sedation, in my mind is appropriate symptom management and that rarely occurs, but is a possibility and occasionally it does happen.

Q: You've mentioned the term, " good death." How would you define that?

Dr. Miller: Well, it really needs to be defined by the individual. There's a wide variety of experiences. But I think the biggest issue that people deal with during the dying process is fear of losing control. Whether it's losing control of their bodily process or just of their independence to get around. One of the important areas hospice is involved in is educating the patient and family on what's going to happen in the dying process, and supporting the patient and the family during this time. And you can see an evolution, the fear of loss of control changes. There's an acceptance of the uncertainty about the future, and an acceptance of allowing family to become caregivers. A change from feeling that I'm a burden on my family to one of allowing my family to share this experience, and really in some aspects, a gift that I can give to them. So in terms of what a good death is, it's in a controlled environment, one with plenty of information and knowledge so that you don't fear the unexpected. Certainly the symptoms have to be managed so that people can be together during a the end-of-life.

Q: If I'm terminally ill, how do I get on hospice?

Dr. Miller: Well, you have to have a physician sign that statement, the certifying statement that you have a disease that would result in your death within six months. But, how you get on hospice is really up to you and your family. There's no barrier from anyone picking up a phone and calling one of the local hospices and saying, ‘I think I want to be evaluated for hospice and a hospice will come out and do an evaluation and make that communication with your physician. If the physician says no, then it stops there, unless there really is evidence that there's a decline and then you can find other medical professionals to substantiate what you think is appropriate for yourself. It is a Medicare entitlement. So everyone is entitled to the hospice benefit, and no one should die in this country with a life limiting disease and not receive the hospice benefit.

Q: Is hospice for everyone?

Dr. Miller: No, I don't think so. Treatment has to be guided by the individual. And there are some individuals who make it very clear I want to be treated, I want to be treated in the most high-tech way possible until the end of my life. And those people would be uncomfortable with hospice. Because just having a comfort care approach and talking about end-of-life would be unsettling to them. They want to be in the hospital, and they want to be in the intensive care unit if necessary. For those people it's not an option. And that's okay. There are other people, even who are on hospice, that don't want to talk about dying too much. They say, keep me comfortable but I don't want to talk about these things. And again you're directed by the patient. So there's a wide range of possibilities, which there should be considering that humans are a pretty diverse bunch.

Q: Some people feel they don't want to accept hospice care because it would mean that they are "giving up." How do you address that?

Dr. Miller: There's a connotation that hospice means giving up-- means the death service. And there are a lot of negative feelings about it. And that comes about because of a lack of knowledge. There's a lack of understanding on the part of the public, and from medical health care institutions, of what hospice is. And I think as we expand the scope of palliative medicine, that people will recognize it's part of our care and it extends into the end-of-life and you don't have to put up that six-month hospice sign and walk through that door. We have a lot of work, but we're slowly overcoming it.

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