Dec 18, 2010

Now I'll Tell You About Franny, and Hospice Care Increasing for Nursing Home Patients with Dementia

I have a dream. A goal really. To keep Dotty here at home until the end. I know I'll need help, and I hope that help comes from Hospice....
By Bob DeMarco
Alzheimer's Reading Room

Few people know this. Caring for Dotty is my second tour of duty. Back in 1991 my father was diagnosed with terminal cancer. He had a wish -- to die at home.

The doctors thought he would last 3 months. We have some monster genes in this family, he lasted 11 months.

For the first eight months, Dotty did it with the help of friends. Little young Dotty, she was only 75 back in those days.

Finally, she just couldn't handle it. That was the first time I dropped out of the World for a while.

For three months Dotty and I went about our business. I heard all the same words: "I don't know how you do it", "Why don't you do this, or do that".

During the last month or so, Franny (thats my Dad) was completely confined to a hospital bed. A hospital bed right here in our home in Delray Beach.

We had a Hospice nurse come in twice a week to check on him, and an assistant come in and give him a bed bath once a week. Other than that it was Dotty and me. This you might find hard to believe, not a single visit from a doctor. I am still amazed when I think about this one.

Franny didn't want to go to Hospice.

I didn't realize it at the time but you can die from bed sores. This is why I couldn't understand, at the time, why the nurse and assistants kept congratulating me on the fact that Franny didn't have a single bed sore.

I kept thinking no big deal. Well, I might have started thinking, no way I am letting Franny get a bed sore, I am digging this praise (even if I had no idea why they kept saying that).

I just rolled Franny around, moved him around on the bed, and rubbed Lubriderm on him.

Franny refused to die. He just kept on going.

I could tell you some stories. How about the night we fed Franny some pizza. Dotty cut the pizza into pieces about the size of a quarter. It worked. You would have thought Franny was having the best meal of his life. I think he ate about 20 quarters before he ran out of strength.

Or, the time I said to Franny, I am going to am going to get a cup of coffee. Franny could no longer talk, he held up two fingers. I used a straw to help him drink the coffee from the cup.

Finally, our very wise and wonderful Hospice nurse said to me -- you need to get your mother to tell him it is okay to go. I asked the nurse, can we sit down and talk about this with my mom? She said yes.

When the nurse left I said to Dotty, when do you want to do it? She said right now. I thought she would be reluctant to do it, Dotty never ceases to amaze me. Not even now.

Dotty went in there, climbed into the bed, held Franny's hand and told him it was okay to go. I can't tell you everything she said, its a secret. Well not really. It is just to hard to get the words out.

Right then and right there, Franny started fading away. He was gone two days later.

I wonder what happened to our wonderful Hospice nurse?

I'm worried about Hospice and the article below is of concern to me. I'm going to need Hospice sooner of later.

I forgot to mention, Dotty and I became good buddies during this experience.

Hospice care increasing for nursing home patients with dementia

A new study of nursing home records shows more residents with dementia are seeking a hospice benefit and using it longer. The study also estimates that 40 percent of nursing home residents die with some degree of dementia. Researchers hope the new data will help policymakers preserve the hospice benefit even as they seek to control Medicare costs.

In newly published research analyzing data on more than 3.8 million deceased nursing home residents, researchers at Brown University and Hebrew SeniorLife/Deaconess Medical Center in Boston found the proportion of residents with dementia who benefited from Medicare hospice care nearly tripled — and the duration of care more than doubled — between 1999 and 2006.

Because hospice care provides important medical benefits to patients with dementia, including more attentive assistance with feeding and medication, the increased use of the benefit is good news, said Brown University gerontologist Susan Miller, the study's lead author. But the data need to be considered carefully by policymakers, hospice administrators, physicians and families in the context of efforts to control Medicare costs, she said.
"Families and caregivers don't always recognize it as a terminal illness, but people die of dementia," said Miller, research associate professor of community health in the Warren Alpert Medical School of Brown University. "Ideally the higher the proportion of people with dementia who are in hospice care the better because many studies have shown a benefit. But the issue is the cost and the length of stay."
The paper, published in the December issue of the American Journal of Alzheimer's Disease and Other Dementias, is the first to estimate the proportion of people who die in nursing homes with mild to moderately severe or an advanced degree of dementia, an important indicator of the prevalence of the condition in nursing homes. It puts the figure at 40.6 percent nationwide in 2006, although that varies widely by state.

Length of stay

Miller also found wide state-by-state variations in the length of stay in hospice care. That is a key finding because Medicare requires patients to have a terminal prognosis of six months or less before they can be enrolled for the hospice benefit. Because the prognosis of someone with dementia is hard to determine so precisely, some patients with dementia have remained in hospice care for much longer than six months, Miller said, and that concerns Medicare officials who must manage costs.

While the national average length of stay for nursing home patients with advanced dementia increased from 46 days in 1999 to 118 days in 2006 — still within the six-month time frame — in eight states more than a quarter of such patients retained hospice care for more than six months. Oklahoma had the largest proportion of long-staying patients with 46.6 percent, followed by Alabama, New Mexico, Wyoming, South Carolina, Mississippi, Arizona, and North Dakota.

The variations revealed in the state-by-state data suggest that very long stays are not just a product of a general uncertainty about prognosis but also of very different practices in different parts of the country.

As Medicare officials consider the cost of the rising use of the hospice benefit, especially with regard to patients with dementia, Miller said she hopes they will not create "perverse financial incentives" that make it harder for patients to get care they really need.

For example, physicians should not be discouraged from referring dementia patients for hospice care even though determining an exact prognosis is difficult. They should retain the latitude to act in good faith, Miller said. Meanwhile, reimbursement should be configured in such a way that it does not unduly favor short hospice stays.
"Initiatives focusing on reducing long hospice stays could disproportionately and adversely affect the timing of hospice referral for persons with dementia," she wrote in the paper along with co-authors Julie Lima of Brown and Susan Mitchell of Hebrew SeniorLife and Deaconess. "It is critical that the creation of any new policy explicitly consider the challenges inherent in the timing of hospice referral for nursing home residents dying with dementia."
Funding for the study came from the Alzheimer's Association and the National Institute on Aging.

Alzheimer's Disease -- Advice and Insight

Original content Bob DeMarco, the Alzheimer's Reading Room