End of Life - What is Hospice?

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Sally Smith: Welcome to Age to Age. I'm Sally Smith. Let's talk. Today we’re fortunate to have Dr. Angus Baker with us. For thirty years he was a private practice doctor specializing in Hematology and Oncology. And several years ago gave that up to become the Medical Director of Hospice of Charleston. And I'm very excited about having you here to talk with us about 'hospice'.

Recently I visited my mother and she has severe dementia, Alzheimer's. And I was thrilled to find a hospice nurse with her. This was in Tennessee. And at that point I realized that I have sort of pigeon holed hospice as an end-of-care situation for cancer patients mostly. And I understood right then that I needed to get to the hospice all over again and that's what I'd like to ask you that today. It's much bigger than I understood it was. What is hospice and why did it developed?

Dr. Angus Baker: Well, hospice is a method of caring for people at or near the end of life. It doesn't require people to die. Some people get better when they're on hospice and may be get off hospice for a while. But it is for patients, took care of patients and their families when the patient that is judged to be near the end of their life.

Hospice first started in this country around 1980. But most communities, in our community I think started in 1981 or 1982. When it first started, it largely had to do with care of in-state cancer patients. But now it has become much more in-state heart, lung, neurological disease, HIV, and these all things. It mainly is designed for home care, patients at home, who would always be at home. But most hospice patients are cared for in their homes.

It is a multi-disciplinary, inter-disciplinary approach to care which is what really makes it possible and makes it work. And it's a team based care for patients near the end of life at home.

Sally Smith: If I would ask, who does it serve? It's patients not just with cancer but patients of all ages and many different diseases. I saw somewhere in a particular hospice and was amazed by this. This was just some of the situations that it touched on. Alzheimer's disease, Parkinson's disease, HIV, Aids, in-state diabetes, stroke, coma, liver or renal diseases, respiratory diseases.

I was stunned by that because it takes such a broad spectrum of knowledge to deal with that. Is this the sort of thing that we deal with here?

It is and a lot of how you'll end up defining hospice these days. By practical necessity is how Medicare defines it because Medicare pays for the vast majority of hospice care. How Medicare defines a person being eligible for hospice care is someone who two physicians usually they're referring. The attending physician and the hospice physician both agree that the patient has reasonable expectancy that could die within six months or less.

And if those two doctors certify that and the patient and their family members wish to have hospice care, that defines what you have to have to qualify for hospice care.

And then the patient or family members can request an evaluation by hospice or the referring physician can. But to be admitted to hospice care, the patient has to have their physician referring them. And sign the reasonable expectation of why to expect six months or less then hospice care begins.

Sally Smith: Wow! And as you say, sometimes they do improve. So you don't have to die six months in order to make the paperwork?

Dr. Angus Baker: That's correct. And that's a big misunderstanding. A lot of people worry about that, 'what if I don't die within six months?' But the way it works is at six months, if somebody still has the disease that's reasonably two physicians agree and sign that it could end their life or like to end their life and the reasonable expectation in the life within six months or less. Then they're still eligible for more hospice care.

I actually had a patient on hospice for four and a half years and at all times had a life expectancy of less than six months based on her disease. And then eventually did die of her disease.

Sally Smith: One thing you said earlier about starting in 1981, was this really a response to the fact that patients had no hope that they were facing the end of their life. A lot of times with a lot of pain. They wanted to be home with their families. Is this the sort of thing that beautiful idea bloomed from?

Well it may have started way back in Medieval times actually. But in modern times, the idea started in England and then moved in New England. And became more and more obvious in the 70's in this country that the pioneer hospices like the one in Connecticut.

This home care provided by a team was much preferred to one doctor and a hospital and a beleaguered family member taking care of patients at home. If you created and provided this team approach to care then everything could work better including better comfort care to end of life. And so that's how it really happened that way up.

Sally Smith: That's exactly what I mean. It's such a human approach, such a caring and warm approach. I know from other studies that I have read especially John Weinberg's study in Dartmouth of that the amount of time those people spend at the end of their life in a hospital. Those people don't want to be in a hospital at the end of their life and all those strange surroundings.

This is to me a very beautiful idea and possibly even no more expensive may be less expensive but much more able to achieve the happy, comfortable end of life goals that somehow I would want for myself.

Dr. Angus Baker: Patients and family members actually worry about giving up so-called 'aggressive care'. Or we like to say in hospice and title of care which is sort of all the same thing, is that we still give aggressive care. We have aggressive care more aimed toward comfort and dignity. And patient choice and family talks about where and how to get the care.

And less emphasis on technical care when it's not working anymore. And we have a feeling that anybody who's getting an aggressive treatment or a disease specific treatment if it's not helping then it's probably causing side effects and caused an inconvenience. And people will be really better off not being on treatments that are not helping.

Sometimes people come to hospice and the doctors say, "I'm sorry there's nothing more we can do." We'd like to point out, "Oh yes there is more that we can do and we do it." And that is by giving aggressive comfort care. And we believe that some of the hospice patients live longer because of hospice than they would be if they're still taking aggressive therapies that turn out to be in fact...

Sally Smith: That makes good sense to me. That brings me to a very interesting question that I had as I begin to read about hospice. Are all hospices the same? Are they independent or are they with just a mother name that they're under? How much independence is there in decisions just like that approach to care that you just spoke of for your hospice.

Dr. Angus Baker: One of the question and maybe some people think at least 15 or 17 hospices. And actually they're all working at this present time whether they're starting or whether they stopped or whatever. But there are many, many hospice agencies in our community. And some other states have certificate of need requirement to have a hospice. It can only be one or two or three in a community.

In our community there are many, many hospices. Some are community-based, volunteer, non-profit hospices like Hospice of Charleston and I believe Lutheran Hospice and I think some old hospices are also non-profit. And there's some that are corporate owned or private hospices.

But let me say that while the ownership and business model can vary from hospice to hospice, there are very strict standards mostly provided by Medicare about what hospice care has to include or how it has to be, what must be given. And we tend to worry about government regulations. In this case, we really feel that the Medicare regulations for hospice are quite reasonable. They are very much aimed toward making sure that patient is well-cared for.

Because the patient does have to give up the autonomy just to go get any care anywhere that you might otherwise have on the Medicare. When you're in a hospice Medicare benefit, you're more assigned to hospice to provide all the care including the physician care and paying for hospital or in-patient care if needed.

Sally Smith: One other final question. How would one shop for a hospice. If it has the word hospice in it, that means it is accredited by Medicare?

Dr. Angus Baker: By Medicare, yes.

Sally Smith: And so if it uses that word 'hospice' it means it is accredited. So it has a certain base level up here. But other than that, it's just you call them up and get a feel for people?

Dr. Angus Baker: If it's a Medicare-approved hospice then that would apply. What we feel or should do is all physicians refer to hospices have ample and learn about the different flavors of hospices in the community. Some have inpatient units, some don't. Some have fulltime physicians, some don't. Some are in certain counties, others don't.

So the patient's physician hopefully is taking care of patients who are sick enough to have end of life care needed. The physicians and all their hospital staff should know a lot about what hospices are available and what the different benefits and advantages of one hospice compared to another might be.

Sally Smith: That is fascinating. Thank you so much Angus for talking with us today. I want to thank also my producer Betsy Reeves, the web administrator Sujit Kara. And I also want to thank all our listeners for joining us today. We welcome your suggestions and invite your comments on our website. This is Sally Smith, Age to Age saying goodbye. And wishing you courage and joy on your own journey. We are all connected

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