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Adam And Krystyna: Hospice Under Scrutiny

March 21, 2013 2:14 p.m.


Mario Garret, Ph.D., professor SDSU School of Social Work, specializing in gerontology.

Mary Ball, president and CEO of the Alzheimer's Association of San Diego and Imperial counties.

Related Story: Adam And Krystyna: Hospice Under Scrutiny


This is a rush transcript created by a contractor for KPBS to improve accessibility for the deaf and hard-of-hearing. Please refer to the media file as the formal record of this interview. Opinions expressed by guests during interviews reflect the guest’s individual views and do not necessarily represent those of KPBS staff, members or its sponsors.

CAVANAUGH: Today on Midday, we're going to talk about an issue triggered by the closure of the San Diego Hospice. It's a perfect storm. Baby boomers are aging. There's a decline in the number of children who can be caregivers, and the safety net is prone to drastic cuts. Joanne Faryon produced a story of one couple's troubles with the closing hospice. Mario Garret, thanks so much for joining us.

GARRET: Thank you for inviting me.

CAVANAUGH: And Mary Ball, who is president and CEO of the San Diego Alzheimer's association, also of Imperial County, right?

BALL: Yes, thank you for having me.

CAVANAUGH: Let's listen to Joanne's story because I think that kind of sets the scene and gives us an idea of why this is such a crucial issue.

FARYON: Last November, Adam Saling received an unexpected letter. It was about his wife, Krystyna, she has late-stage Alzheimer's disease. The letter was from San Diego hospice. It was notification that after receiving hospice care for the past six years, Krystyna was being discharged because he was no longer dying. He had witnessed his wife's slow decline from strong and vital woman to a whisper of her past self. Just nine days prior, she had lost her ability to walk.

SALING: The letter from the hospice that essentially she is no longer terminal. I couldn't understand that because once a person is terminal, it's terminal until the end.

FARYON: After six years of receiving weekly visits from a team of nurses and health aids, she was cut off from the government-paid service as San Diego hospice scrambled to discharge patients who may not have been eligible for care. She was not the only one discharged. There were others in her nursing home, hundreds more across the county. In total, San Diego hospice reduced its patient population from 1,000 to just 400 late last year as it tried to get ahead of a Medicare audit and federal investigation questioning whether the people they were caring for were actually dying. Adam and Krystyna first met at a junior college in Germany. The music is a Polish solidarity song. It defined the time for Krystyna and Adam. They emigrated to Chicago. Adam proposed, and the two were married in 1956. The next several decades brought with it a move to San Diego, new careers, and a daughter.

SALING: Life was very nice in Southern California.

FARYON: Until 2003, Krystyna was diagnosed with Alzheimer's disease.

SALING: There was absolutely no indication that Krystyna was threatened by a disease. Her mind was very active.

FARYON: Whether Krystyna was ever eligible for hospice when her doctor first referred here in 2006 is at the heart of why San Diego hospice is being investigated by the federal government.

SALING: Even then, she was not in a bad condition.

FARYON: Hospice is under scrutiny nationwide. The government wants to know what's behind its soaring cost. $13billion in 2010, four times what it was a decade ago. Add up the monthly benefits San Diego hospice was paid for Christina's care over the six years, it totals more than $300,000 for one person. Doctor doors howl founded San Diego hospice in the '70s. She says she knew taking on too many Alzheimer's patients for too long was causing a problem.

SALING: We looked at them and said do you want us to, you know, say on 12:00 in six month, the patient is no longer eligible?

FARYON: Krystyna is losing the ability to swallow, the final stage of Alzheimer's. Weeks after being discharged from San Diego hospice, she was accepted by another provider. The experience has left Adam questioning the rationale of the system and the integrity of the institution which provided his wife treatment when she didn't need it and abandoned her when she needed it most.

SALING: She has led a very interesting and active life, and would like our friends to remember her.

CAVANAUGH: And we have in studio to talk about the issues that this story brings up, Mario Garret, a professor of gerontology, and Mary Ball, president of the San Diego Alzheimer's association. The story we just heard was about a woman who was cut off from the San Diego hospice because she took longer than the officially allowed time to die! How is this a symptom of what is facing many older people today?

GARRET: Well, in most case, you don't have to die within the six months, you know? You can get an extension on that. We must make sure that people understand that. Medicare is there to help people in hospice to die with dignity. So they shouldn't put people away from using that service. Actually it's underutilized. We need to use more hospice. But this shows how piecemeal our services are for older adults. We have people dealing with hospice, with medication, dealing with transportation, and they're all separate, and they're all silos. What there needs to be is better coordination, and really to look at the case that we had here about the woman that had Alzheimer's disease. It takes about 15 years, you know, for it to kill you. So that's a long gestation period. And we need to make sure that the services that that person needs are there for her or him. The issue now is we don't have that coordination. What we have is really silos, people providing one type of services to an individual and really no coordination.

CAVANAUGH: Okay. So Mary, this is just the story of one woman, Krystyna, but how difficult is it to find care for people in their declining years who have Alzheimer's specifically?

BALL: Well, it's very challenging. And today in San Diego County, there's more than 60,000 people that are living with Alzheimer's disease. And the typical length of time before they pass away is about ten years. And the challenge for many families is the need for care is long before end of life care. And the services that are out there cost money. And many families economically can't afford to have someone come into the home to supervise their loved one or adult daycare services. So it's very challenging for families to find care throughout the time their loved one has Alzheimer's disease.

CAVANAUGH: So Mario, what are you people to do when they take six months for the whole process?

GARRET: That's right. And there are fragmented services after that. If this is difficult for the general population, look at migrants and how difficult it is for migrants. It's also extremely difficult in San Diego. We have a very large Latino population, and we have not addressed that. We just actually today have a paper populationed in the general of population aging looking at that increase among the Latino population. And by the year 2050, what we expect is that the Latino population suffering dementia will increase by 11 times! 11 times! And we are not --

CAVANAUGH: What is the cause of that increase?

GARRET: Well, the cause is a number of factors. A lot of demographic issues, but primarily it is demographics. The second one is because a lot of Latinos suffer from diabetes, hypertension, cardiovascular diseases. So preconditions. Dementia is really a problem of the brain, and the brain is a very fine organ. Anything that is bad for your health is bad for dementia. And what we are seeing is that there is very little proactive -- addressing the issues that are coming down the pipe.

CAVANAUGH: Well, you're adding to the issues now by pointing out that perhaps there's going to be a big increase in the Latino population. But the same applies to all of us, I guess.

GARRET: Correct.

CAVANAUGH: You're talking about the fact that there are silos, what do you mean by that?

GARRET: Well, silos in terms of we have services that only cater to one specific need. What you find when you get old is that the needs are not specific, they are very general, and also they happen very fast. So if you break your leg, it's not just about an orthopedic support that you need. You need transportation, you have issues with eating, problems with communicating with people. So it's really an all encompassing problem, and especially with older adults.

CAVANAUGH: So you can't just go to one place. Where's the hospice is one place, I guess.

GARRET: Correct.

CAVANAUGH: Mary, have you had a lot of inquiries since the hospice had to close from people looking for assistance?

BALL: We have had some inquiries. The good thing in San Diego, there's a number of hospices out there that are bridging the gap and filling that need in the community. The estimates are in hospice care, more than 1/3 of the people in hospice care today, whatever hospice it might be, are suffering from Alzheimer's disease or related dementia. And it is very difficult with those folks to really determine what the lifespan may be.

CAVANAUGH: And the medications --

BALL: And the medications. But the issues about care start long before end of life care. The issues about daycare and supervision start ten years before that. And I think those are the issues as a community. And at the federal level, we've got to address -- of course we've got to address changing Medicare eligibility around Alzheimer's disease. But it starts long before that.

CAVANAUGH: So you're sort of saying that this void exists so it's not surprising that San Diego hospice kind of stepped into it because there was no -- is it true to say that there really isn't another easy alternative?

BALL: There aren't. For many of these families, there aren't other the alternatives. And when they are seeking assistance from their medical doctor, they do refer them to hospice care because they're not sure when that person may pass away. And it's a benefit that's covered by Medicare. Where other options aren't covered by insurance and people don't have the resources.

GARRET: Yes, hospice is not just about a dying person, it's also about a family. Which is why it's such a great service. And we really need to address what the needs are. And we said at the start of this discussion, we should not frighten people from using hospice. Hospice is excellent, they need to use it, and if they need more time after six months, there are ways of doing it. But it's not clear cut. And we need to bring end of life issues back on the table. We need to start discussing them, leave the politics out of it, the religion out of it. We need to discuss it in a very rational way. And what the guy, the reporter said about having -- not understanding the rationale for this, really we do not understand the rationality for it, and we need to talk about the rationality of our healthcare system in general, and specifically end of life issues.

CAVANAUGH: So are you suggesting that one solution might be to extend the amount of time that people can stay in a hospice? Or are you saying that there's other things that need to happen?

GARRET: Everything should be on the table! End of life, assisted suicide, prolongation of life, everything should be on the table. There are some people who are very comfortable with physician-assisted suicide, and other people are not. We should not have a one size fits all. We need to address the needs of the individual. And we don't do a very good job with this. We say this is what we provide, this is what the federal government funds us for, and that's all we're going to do. And that is in fact very piecemeal and doesn't get us anywhere. This problem is going to keep coming up.

CAVANAUGH: And it's not just the government that I guess should be thinking about this. Most of us think this is a problem we'll face when we get there! But do you think it's important for people to start thinking about this way ahead of time?

GARRET: Of course! But the federal government of course pays the money. And they are the ones that control most of the discussion here. And it needs to be a discussion on the federal table, it needs to be a discussion on the state and that level as well.

CAVANAUGH: And the private way, how many people are taking advantage of that finding that it helps?

BALL: Very few people take out long-term care insurance. It's in the single digits. And for the people that we work with who have been diagnosed with Alzheimer's disease which is a terminal disease, they don't have the long-term care insurance. So it really limits options out there for them.

GARRET: Yes, and they try to promote that, but it has never been very popular, unfortunately.

CAVANAUGH: So it is more of Medicare coming up with better solutions, right at the time when Medicare is looking at possible cuts.

GARRET: That's right.

CAVANAUGH: Okay. This leaves us with a conundrum, but we'll have to leave it there for now. Thank you so much for joining us.

BALL: Thank you.

GARRET: My pleasure, thank you, Alison.