A Conversation with Dr. Greg Miller

Continued...

Q: In order to qualify for hospice, you have to basically say, "I'm not going to actively pursue curative treatment'. What advice can you give patients having to make that type of decision?

Dr. Miller: It's a very difficult decision to make. And I believe it's not necessary to make it a black and white decision. It's important to have real conversations with your health care professionals and to try to educate yourself as much as possible so that you make an informed decision about a treatment. And only in that way can you get a sense of where you're going. For example, if you're given the option of a very aggressive treatment, that's going to make you feel poorly, and there's only a five percent chance of that making any impact in your length of life, that's important knowledge to have. And then you need to be able to discuss that with your family and with your health care providers to make that decision. If you choose to do that, to go ahead with this treatment, then it's important to have all those palliative components there at that time. Because there's a ninety-five percent chance that it's not going to work. And you need to have that structure available. So I guess right now, it seems black and white, because it's, gee, if you're going to remain on this curative treatment, you can't go to hospice. And that's because we don't have the palliative medicine piece in between. Eventually that will change. And so people can look at aggressive treatment and have other options available. But it's an individual decision, and it has to be done with as much information as possible.

Q: Along with the trend to look more at how we die in this country, there's also a movement to say that patients have rights. What rights do patients have?

Dr. Miller: Patients have the right to, not only get excellent care, but even the supreme court back in 1997 said there's a constitutional right not to suffer. And I think that's important for people to understand that they don't have to suffer any undesirable symptom. And that there are people that will take care of that symptom and if they're not being treated, they need to demand it. Some physicians may feel uncomfortable with patients demanding treatment, but that's because things are changing now. I think physicians in the past had been put on a pedestal. Things have changed dramatically in the last 10 years, and to have a working partnership between a patient and a physician is really important. So, there is that interaction and for those folks that aren't getting symptom management, they do have a right to it and they need to demand it.

Q: Let's talk about some of the families we're focusing on in "The Journey Home". Karen Cook has dealt with the difficulty of making health care decisions. She's mentioned at times that she's felt pulled in different directions between what hospice tells her she should do to prepare for dying, and what her other doctors are telling her . How would you address that?

Dr. Miller: Karen represents an atypical hospice patient because of the length of time that she's been on hospice. Our average length of stay is less than twenty days. And so when someone stays on for months and months and months the focus can change over time. She was given the diagnosis and a prognosis that she was going to die, and so there was a lot of end-of-life work done early on. But she hasn't died. And she's gotten better at times, she's gotten worse at times, and so it really represents how palliative medicine should work. But over a long period of time we do symptom management. Including recently, her blood level got quite low and she wasn't able to interact with her family because she was weak, so she received several transfusions which got her strength back. So, again it's a little different than someone who is rapidly dying. Also, it is an important difference in the model that we hope will exist in the future as hospice professionals can interact with patients and families for prolonged periods of time.

Q: What can Karen expect, how will her disease progress?

Dr. Miller: Well I think now we're getting to the point that, as in most cancer cases, people become more fatigued, and that they spend more and more time sleeping and in bed because they just don't have the energy to get up. With that, they start to lose their appetite, so they're not eating. And it just represents the general overall decline. Pain may or may not be present. But that's fortunately easy to manage. But if you look at how the course of people's functioning decreases with cancer, it's a pretty straight line approach. Once the disease reaches a certain point, things just decline continuously. And she'll become more and more bed ridden, the family hopefully will gather around and she'll have a peaceful death.

Q: Describe what happened with Rick Rydalch's brain tumor.

Dr. Miller: Rick was diagnosed with a brain tumor seven or eight years ago. He underwent some treatment, but it was not an aggressive tumor. And he led pretty much a normal life after the original diagnosis. Then he acutely developed new symptoms, and on evaluation found out that he had an expansion, a very large expansion of the tumor, and it also had changed in its aggressiveness. The tumor is present in much of the left side of his brain. And he was given a prognosis of having less than six months to live. And surprisingly, he's not declining rapidly. But he has significant lost cognitive function. So he's a different person. You can imagine the frustration of having a brain tumor for seven years and leading a normal life, and all of a sudden it's changed. They tell me I'm gonna die. I don't think like I used to. But really I'm doing fine. So, we've got those forces going on. And now he needs supervision, where he didn't need supervision before.

Q: Rick's wife, Jeannett wanted a test, a CAT scan, done on Rick to see if the tumor was growing. That's something that you and the hospice team decided not to go for. What's the decision process you go through to determine whether someone can get a test or treatment while on hospice?

Dr. Miller: Well, we're guided a by a primary motive and that's to treat symptoms. Whatever they may come from. So we will do anything to treat that symptom. Whether it's radiation, or surgery, we're guided by symptom management. The symptom that was present for the Rydalches that created the request for a scan was the symptom of, what's the future going to be? The uncertainty. And I don't think that would have been answered by a test. And that's why we made the decision not to perform the test. And I think what occurred was we were able to have a dialogue with Jeannett about her fears and the lack of ability to forecast the future. We really focused on what the caretaker was trying to figure out --how much energy she had and the hope that the CAT scan would tell her, well you've got a month left. Well, I can make it for a month. Verses well, I have a year left, and I don't think I can make it for a year. So, with the dialogue I think we helped her out, where the CAT scan I'm afraid would not have done so.

Q: Do you really have to watch the bottom line?

Dr. Miller: Yes, we have to constantly be aware of it. We recently had a couple of hospice companies here in the Salt Lake area close. The Medicare hospice benefit provides per diem payment to the hospice company. And at this time, it's around one hundred dollars a day. And that money covers home visits as well as medications and some procedures. There's a lot of palliative medicine treatments that decrease symptoms that are very expensive-- radiation, surgery, some chemotherapy. And if those treatments are ongoing when someone is referred to hospice, many of the hospice companies, because of the small number of patients they take care of, can't afford to take on that financial burden. In Utah, hospice is a cottage industry. Many of the hospice companies only have twelve to eighteen patients. So they're at a marginal operation, and they can't take on a very expensive case because it would shut them down. Companies that have one-hundred, two-hundred, four-hundred patients can absorb an expensive case every once in awhile. But we're not there in Utah, we just have these tiny companies. So that's a real frustration.

Q: You mentioned that Jeannett was having a hard time dealing with Rick's illness. What are your concerns for her?

Dr. Miller: Well, our biggest concern is that she's going to burn out. That she won't have the strength to continue to be a caregiver, plus be a mother, with all the financial concerns, lack of support from the state, and that some day she'll just throw her hands up in the air and say I can't take it any more and bolt. Considering what she's going through, that's not an unreasonable expectation if she doesn't get some balance in her life.

Q: What happens if she does bolt?

Dr. Miller: Well, then we're in a real dilemma. If a caregiver burns out, and that does happen, you look first to the family. If there's an extended family that can bridge the gap. And you would hope you'd have that initially, so that the primary caregiver does have relief and doesn't have to take on the whole thing alone. Because you can't do it by yourself. And there are cases where the primary caregiver can no longer do it, especially in the older population. Usually the spouses are around the same age, they both have some disability, and they can't provide continuous care. If the caregiver burns out, and there's no other support, then you look for other options. Such as a care-center where the patient would go to and be treated instead of in their home. Usually it would be a nursing home. And that's not a great option for a young person like Rick.

Q: What would be the ideal option?

Dr. Miller: Well, the best option would be to have a hospice house – a residential facility, specifically designed and staffed for end-of-life care. Not a skilled facility, not a hospital setting, not for people with unstable out of control symptoms, but a residence that can provide the environment and support when it can't be provided at home. Many states have hospice homes, but we don't have any in Utah at this time. It's something many hospices would like to see in the future. I think it will happen, I think as people understand that there's a missing piece in Utah's end-of-life care delivery system, that people will become interested and support the establishment of at least one if not more hospice houses.

Q: Describe Cary Jones' case.

Dr. Miller: Cary is a young woman who was diagnosed with lymphoma. And her disease progressed until she was referred to hospice. And when admitted to hospice, she was quite uncomfortable, she had massive edema, swelling, and a lot of tumors present. She's gotten a lot better. She's gotten worse, and then better. So, she is an example again of someone who has a fluctuating course of their disease. When she came on she really thought she was going to die soon, and she has done incredible personal work. The family has evolved through time and understands the process. And they're looking at her good times as a gift. It's problematic, of course, when she has a bad time. And it looks like uh-oh, here it comes, so let's prepare. And everyone kind of does so and then she gets better again. I would like to think much of it is due to the great care that the hospice team is giving, which in some respects is true. We've done some great symptom management.

Q: Do you have frustrations?

Dr. Miller: Yeah, I think there's a big frustration nationally with hospice because there are not enough nurses. We are really limited right now in the amount of service that we can provide because we don't have the professionals to deliver the care. And that's true locally as well as nationally. So, it's a professionally limiting staff. And that's very frustrating since we only have a small percentage of the eligible people on hospice. We want one-hundred percent of everybody whose eligible to be on hospice. And today we couldn't provide that care. We just couldn't do it. Even in the local community, the hospice personnel migrate between one hospice and another depending on administrative issues, pay issues. But it's because there are not enough new people that are coming into the field who are interested in end-of-life care. That's a frustration.

I think the other frustration is the reluctance of my physician-peers to recognize hospice and refer patients in a timely manner. It doesn't take too many cases where you admit the patient and they die within twenty-four to forty-eight hours, to make you crazy. Especially knowing what you could have provided to the patient if you had weeks to months to work with them.

Q: Any last advice to patients?

Dr. Miller: It is important to have dialogue between patients and their physicians, "Doctor I know you're ging to try to cure any disease that I bring to you, but I know you won't be able to always do that. I want to make sure that you care for me, and when a cure is no longer possible, that you care for me as I die." If everybody did that with their physicians, it might make a significant difference. So, I would encourage people to have that dialogue with their physicians that it's okay not to cure. Because eventually, we won't cure.

Back to Dr. Miller's biography