Dr. Zorba Paster: Entering hospice should not be viewed as 'giving up'

Last year, I wrote about a hospice issue in answering a letter from a reader. I'd like to repeat that column, with some edits, a nip and tuck here and there, because of something that happened to a recent patient — he went into a terrible hospice.

Dear Doc: My mother is failing, with lots of medical problems that just have made her life miserable. She's in pain all the time, she's depressed, and her heart is failing. She was a lifelong smoker and is on oxygen. She can barely walk across the room without getting short of breath.

Her doctor said she would qualify for hospice. Most of the family is against it — they say mom is "giving up." I think it might be a good idea, but I don't want to go against what everyone else is saying. What do you think? — Sad reader

Dear Reader: I have a motto: It's never too early to go into hospice. Hospice is a Medicare Part A benefit. It's officially for people who have a six-month life expectancy, but the rules are a bit blurry.

Now, you can go off hospice anytime you want. If you want your mom to go to the hospital, you can, on that day, just go away from hospice and back on Medicare. But — and this is a big but — that is not the purpose of hospice. The goal is to make a person comfortable when they are at the end stage of their life.

The last thing anyone would want is to be in the hospital, surrounded by tubes and machines, having your blood pressure taken all the time, especially when you're trying to get to sleep, and then dying. That is not the way to go. But too many Americans do that because they want to do everything, and I mean everything, to stay alive when they might be at the end of their life.

Hospice benefits, and you can look them up, include visiting nursing assistants to help with bathing, nurses who come to the house to see how things are going, and social workers who check to see what you need. They provide hospital beds, adult diapers, medications and many other things to help your loved one stay at home when they are, in medical terms, transitioning.

In some ways, it seems like a hard choice, and there is that view that going into hospice is just giving up. And then there is the "seagull effect." Everyone at home with the ill person has made up their mind about what to do, and then someone from out of town, like a son or daughter who hasn't been involved on a day-to-day basis, flies in and poops on the plan.

They don't necessarily know what's happening, really, because they haven't been there, but they come in and immediately think they know what's best. This happens far too often.

My spin: At the end life, if someone has a potentially terminal prognosis, the time to call hospice is sooner and not later. The benefits can be huge. I also suggest that if you can choose a hospice, choose one that's a nonprofit unless, and that's a big unless, you can evaluate whether or not they give excellent care. There are too many for-profit hospices that do not go that extra step because they're paying attention to their bottom line.

Nonprofits often have a history of enlisting volunteers to come and just sit with the person who is transitioning. That means extra care — that doesn't come out of their pocket. Keep in mind that Medicare reimbursement for hospice varies, depending on the patient's length of enrollment in hospice. Days 1-60 bring approximately $200 per day, and days 61-plus bring approximately $155 per day. For-profit hospices are keenly aware of those numbers.

Now, it's not that all for-profit hospice situations are bad; far from it. Some are good and some are not, just like all doctors and all clinics vary — some are better than others. But I was aghast when I found out this patient did not have the same one-on-one care that our area's oldest nonprofit hospice, Agrace, had.

Agrace, the first hospice in Madison, was started by the late Dr. Bill Rock years ago and is still going strong. They are stars. I remember when Bill Rock spoke to me at Methodist Hospital, a hospital in Madison that became part of Meriter. He told us that our job, with people at the end of life, was not to "save them at all costs" but make their life more comfortable. And hospice does just that.

So back to this patient; keep in mind that you can switch hospices at any time you want. There is a right way and a wrong way to do this. The right way is to call the new hospice and have them arrange the switch. That way you don't have to go through the enrollment process again. That's critical. Stay well.

This column provides general health information. Always consult your personal health care provider about concerns. No ongoing relationship of any sort is implied or offered by Dr. Paster to people submitting questions. Any opinions expressed by Dr. Paster in his columns are personal and are not meant to represent or reflect the views of SSM Health.

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