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Is Hospice a Drain?

Recently, The Washington Post ran a story investigating the increased use of hospice care. Its investigation found that the number of “hospice survivors” has increased greatly in the last few years. That is, people are put on hospice. Then they get better, and come off hospice. The Post’s story suggested that one reason this happens is that hospice firms have gotten better at recruiting patients, and that they have a motivation to recruit patients who aren’t quite dying yet. These sorts of patients need less care and stay on hospice longer. As the story’s headline put it, “Hospice firms draining billions from Medicare.” Of course, as a geriatrician doing house calls in the San Francisco Bay Area, I completely agree that it’s best when families can care for elders at the end of life. But I know from experience that this is just not possible for many families. Sometimes, adult children live far away. Other times, relatives simply do not have the resources—whether of money, of time, of expertise or of all three—to provide hospice care to their loved one.

Hospice care can be a great boon at the end of life. The popular perception is that “hospice” means “giving up.” Actually, patients on hospice—care that emphasizes alleviating symptoms rather than a cure—tend to live a bit longer than similar patients who don’t get hospice care.

While the Post’s investigation found an increase in patients enrolling in hospice too early, many patients enroll in hospice care too late, or not at all. For instance, only one-third of Medicare patients with a dementia diagnosis currently receive hospice care. And according to 2013 figures, the median number of days in hospice care was about 18.7 days.

What worries me is that our “fee-for-service” model of health care emphasizes profit incentives, there are just too many angles to squeeze. This hospice situation is just the latest.

A few years ago, it was nursing homes that were maximizing the number of Medicare dollars they could grab. Then the requirements tightened, and now almost none of my patients qualify for Medicare-paid nursing home care. I even had a patient who was refused nursing home care after a hip replacement, a situation in which a month or two of nursing home care would seem to be an obvious choice.

So now it’s hospice care that appears to be the profit center: The medical groups and hospitals have an incentive to release patients into hospice care. If a patient is put on hospice, they will not “bounce back” to the hospital for 30 days. In our current system, hospitals and medical groups make money from doing procedures, i.e. “fees for services.” They don’t make money taking care of patients in need of chronic care or recovery care, so they push those patients into hospice. And, apparently, many of these patients don’t die and “graduate” from hospice care.

I believe that the problem is not Obamacare, and it’s not Medicare. The problem is that we still seem to be too wedded to this “fee for service” model. It would make so much more sense if doctors, hospitals and medical groups were free to consider the need of the patient foremost. Everyone will tell you that that’s the case now, but the economic pressures in medicine are intense. Of course, hospitals and doctors want to care for patients but they also need to keep the lights on.

There are no great answers here, but it seems to me that a single payer medical system would avoid the kind of distortions like this spike in patients referred to hospice too early. In the meantime, I worry for the patients.

Elizabeth Landsverk, MD Specialist in Geriatrics

Board Certified in Geriatrics, Internal and Palliative Care Medicines. House calls throughout the San Francisco Bay Area

 

Hard to Swallow, Part 2

liz_bio_pic                                                                                                                                                                                                                                                                                                                    Recently, I came across this story from a family that inspired more thoughts about swallowing: An elderly woman suddenly started holding her breath. She gagged whenever she tried to eat, and she started spitting up saliva. Her daughter, a nurse, thought, “Oh my God, this is it.” The daughter rushed her mother to the emergency room. The doctors at the ER confirmed the daughter’s fears: Her mother’s dementia had progressed, they said. Her mother was losing the ability to swallow, a development that often marks the beginning of the end.

The daughter asked the physicians to do what’s called a “swallow evaluation,” in which a doctor would thread an “endoscope” down the patient’s throat to see what was going on. The ER docs refused to do this, and suggested that the daughter arrange for it through primary care.

The next day, her mother started holding her breath again and was really beginning to suffer, so the daughter took her back to the ER. At first, the doctors didn’t want to admit her mother, but they finally relented. Again, the doctors insisted that the daughter needed to accept that the dementia had progressed, that this “was it” and so on.

The daughter responded that she was willing to make the hard decisions when the time came. But she wanted to be sure that she’d exhausted all possibilities first. She pushed for the endoscopic examination of her mother’s throat. Finally, the doctors relented.

When they did the evaluation, they found that the patient’s throat had narrowed in two places. They stretched out those “rings” and the patient is back home and doing fine.

Like the swallow story I described in my previous post, I think that this story illustrates one of the central challenges of caring for elders with dementia:

How do you find the treatments and evaluations that will improve quality of life, while at the same time avoiding treatments and evaluations that can be done, but are unlikely to improve quality of life?

In my practice doing house calls for patients with dementia, I have often seen cases in which elder may have dementia, but still has a pretty good quality of life. Then that elder gets pneumonia from aspirating food, that is, from getting bits of food lodged in their airways. Let’s say this happens twice in four months. Too often, patients will be referred to hospice in a case like this. But I have found that it’s often enough to decrease sedating medications and to prescribe a full course of antibiotics.

That’s the balance we must try to maintain in caring for elders with dementia: Do enough; but not too much.

Less sedation and antibiotics may be the solution in the case that I just described. But let’s say the patient eventually progresses to a point where they really cannot swallow. In that case, I generally would not recommend a feeding tube. It might prolong life, but what sort of life?

Often, even at the end of life, there are all sorts of things that we still can do. The tricky question is: Should we? The answers are different for each family and for each case, but I think it’s always good to ask these questions: “Does the patient have a good quality of life? Will the exam or the treatment we’re considering add to that patient’s quality of life? If the treatment or the exam will not add to quality of life, then why are we considering it?

These are tough questions to ask and to answer. But I believe they are necessary questions.

Elizabeth Landsverk, MD - Specialist in dementia

 

When Things Get Hard to Swallow

As a geriatrician making house calls throughout the Bay Area, I often must explain to families that toward the end stages of dementia, their loved ones will eventually forget the most basic of physical functions, like how to swallow. Often, this signals that there’s not much time left. But not always.

My own mother died last year at the age of 88. She had advanced dementia and required total care for the last five years. Her ability to communicate was extremely limited. In July 2010, my mother started to clear her throat over and over. She ended up at the emergency room where all her lab work came back normal: urinalysis, a CT scan of her head, and so on. The staff advised me that her dementia had progressed and she had lost ability to swallow. They advised either a feeding tube, or hospice care.

I felt that a feeding tube would be too stressful for my mother, because I couldn’t explain its purpose to her in a way that she would understand. The hospital staff refused to feed her because of the risk that she might aspirate the food, that is, suck food down her airway rather than swallow it normally. One day, as I was feeding her, I asked my mother, “Do you have something stuck in your throat?”

As clear as day in that moment, my mother answered, “Yes.”

I advised the hospitalist, the doctor in charge of coordinating hospital care, of this exchange. He still insisted that she had lost her ability to swallow. The doctors did not want to hear that she simply had something stuck in her throat.

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So I went home and did some research. I found that, in a situation like my mother’s, the recommended action was to get an “endoscopic evaluation.” That is, a scope should be inserted down her throat while she was sedated, so that the doctors could get a clear picture of what was going on down there. I went back to the hospital, and the doctor refused to consider this course of action. The hospital began to threaten me. They said they would discharge my mother against my wishes if I did not agree either to tube feeding, or to hospice care. I had to fire the first doctor and consult another.

The next doctor, a gastro-intestinal specialist, was wonderful. He agreed to do the endoscopic evaluation as long as I would sign a form releasing him of liability if anything went wrong. (All procedures are more risky for a patient who has advanced dementia.) After about 45 minutes with my mother, the new doctor came out beaming and said, “Your Mom is the luckiest woman in the world!”

He asked me to come back into the procedure room so that I could see what he meant: The endoscope images showed that my mother’s throat tissue was not damaged. And there, low and behold, was a sliced carrot lodged in my mother’s throat. It had been there the whole time. He removed the carrot, and my mother’s symptoms vanished.

After that, my mother was put on a pureed diet. She lived for three more years.

Yes, dementia is a disease that eventually causes death. But we need to remember that even demented elders may sometimes still have something to communicate. As difficult as it is, we need to be open to the possibility that they may be trying to tell us something important. If I had not pushed for that endoscopic evaluation, my mother would have died three years earlier.

We need to listen, and observe, and advocate for our elders. Yes, we need to accept it when “it’s time.” But we should not do that until we have eliminated all other possibilities.

Elizabeth Landsverk, M.D. specialist in geriatrics

What if an Elder Resists Treatment?

One of the most common complaints I encounter doing elder care house calls is this: “My—father/mother/aunt/uncle/grandmother—will not cooperate with care. We’re just trying to help, and our loved one fights us every step of the way!” There are so many reasons that the elderly may resist treatment: anxiety, delusions, frustration, old resentments, a desire for control. I could easily write a book on this topic alone.

elder stress

But one of my key findings is that, for us as family members and elder care practitioners, it’s easy for us to overlook two simple causes for an elder's resistance to treatment: low-level pain and a lack of pleasure in life.

Often, I try two simple solutions before looking for deeper causes:

• I prescribe 500 mg of Tylenol, three times a day. It’s amazing how much more cooperative people become when they’re not constantly burdened by arthritis, headaches, or other ignored pains they may be suffering.

• I prescribe ice cream. One of the difficult realities of growing older and of suffering from dementia is that it’s easy to go days and days without feeling pleasure or joy in life. Elders may lack the mobility or cognitive ability to participate in activities they once enjoyed, whether that’s bridge, golf, reading or needlework. But everyone, even the most frail and ill among us, can enjoy a dish of ice cream. There are even delicious ice creams for diabetics.

Of course, if these simple measures don’t work, more investigation is in order. But as a geriatric specialist, I’ve found that the power of simple over-the-counter painkillers and ice cream is undeniable. Let's allow our care practices to reflect our compassion.

Elizabeth Landsverk, M.D. Specialist in Geriatrics, ElderConsult Geriatric Medicine

Don’t Forget Dental Care!

Brushing teeth

Recently, as I was doing house calls in the San Francisco Bay Area, I visited a patient whose dentures were caked with plaque. Those dentures spoke volumes. Often, a patient with dementia will not let caregivers near their mouth. After a hospitalization of several weeks or months, the last thing a family may be thinking about is tooth brushing and flossing. Remember that dental issues can become serious problems: It goes way beyond bad breath and cavities. Poor dental hygiene can lead to life-threatening infections. It can result in lost teeth, discomfort, difficulty eating.

One way to get “buy in” from your elder is to let them hold the toothbrush. Stand behind the elder and help them to guide the brush or floss where it needs to go.

Elders may also respond if you wear a surgical mask and act as if you’re a professional hygienist. It depends on personality, but some elders respond to that kind of “authority.”

Dementia expert and consultant Teepa Snow has produced an excellent video with detailed instructions  and on YouTube (quick view) explaining dental care for elders with dementia. Check it out!