Patti's Blog - Advocate for Elders, People with Disabilities and Their Families

Why Some Hospices Turn Away Patients Without Caregivers At Home

Excerpt from: NPR (click for full article)

 

"Lots of families can't afford to stop working to care for a patient," says Terry Berthelot, a senior attorney at the Center for Medicare Advocacy's Mansfield, Conn., office, where she works with seniors who've been denied hospice care, among other things.

Medicare typically pays most of the bills for hospice care. Under Medicare rules, patients who enter hospice care typically have less than six months to live.

Once a patient chooses to enter hospice, the benefits include medical treatment for non-curative purposes such as pain and symptom management, as well as emotional and spiritual support for patients and their families. Depending on a patient's needs, a nurse, home health aide or other hospice worker generally visits a patient on a regular basis.

Amy Grant opens up about parents' dementia

Excerpt from: Huffington Post (click for full article)

 

My sisters, Kathy, Mimi, Carol, and I have become a team, meeting with doctors and hiring caregivers (thank you, Dad, for all of your careful financial planning). Communication has been vital. My advice to every family going through this is to talk honestly with each other.

This reversal of roles -- caring for the ones who had been so capable -- is not easy. We would adjust to one change, one new wrinkle in this long downward slide, and then there'd be something new, one more loss of function, and we'd regroup.

 

Preparing for a Loved One to Die at Home

Excerpt from: New York Times (click for full article)

 

“What I see that prevents people from being able to stay at home [to die] is not their medical needs but the needs of their caregiver — can the caregiver really help, are there resources to help, or is that person going to be overwhelmed?” Dr. Morrison said.

There is professional help available. But before we get to that, here are what specialists say are the most common kinds of equipment and preparations you may need – though, of course, every person’s medical and emotional condition is different, as is every person’s home.

1. Make room for the bed.

2. Don’t forget curtains for privacy.

3. Get tools that keep them moving. 

4. Fix their favorite chairs.

5. Experiment with earphones.

6. Make the existing bathroom safer.

7. Good lighting is critical.

8. Bedside commodes are a delicate matter.

9. Make breathing easier.

10. Are pain pumps or intravenous drips for pain helpful?

11. Should you order a hospital bed?

12. Consider hospice

On the Way to Hospice, Surprising Hurdles

Excerpt from: The New York Times (click for full article)

 

I’ve often wondered why more families don’t call hospice when a loved one has a terminal disease — and why people who do call wait so long, often until death is just days away.

Even though more than 40 percent of American deaths now involve hospice care, many families still are trying to shoulder the burden on their own rather than turning to a proven source of help and knowledge. I’ve surmised that the reason is families’ or patients’ unwillingness to acknowledge the prospect of death, or physicians’ inability to say the h-word and refer dying patients to hospice care.

But maybe there’s another reason. A study in the journal Health Affairs recently pointed out that hospices themselves may be turning away patients because of certain restrictive enrollment policies. It’s possible, too, that physicians who know of these policies aren’t referring patients whom the doctors fear wouldn’t qualify.

Forced to Choose: Nursing Home vs. Hospice

Excerpt from: The New York Times (click for full article)

 

An older person, someone who will die within six months, leaves a hospital. Where does she go?

Almost a third of the time, according to a recent study from the University of California, San Francisco, records show she takes advantage of Medicare’s skilled-nursing facility benefit and enters a nursing home. But is that the best place for end-of-life care?

The study, using data from the National Health and Retirement Study from 1994 through 2007, looked at more than 5,000 people who initially lived in the community – that is, not in a facility. About 30 percent used the skilled-nursing facility benefit during the final six months of life; those people were likely to be over 85 and family members said, after their deaths, that they had expected them to die soon. (The benefit is commonly referred to as S.N.F., which people in the field pronounce as “sniff”).

Forced to Choose: Exploring Other Options

Excerpt from: The New York Times (click for full article)

 

I wrote last week about the poor choices facing patients, most very old and within six months of death, who need nursing home care after a hospitalization.

Medicare will pay for hospice, the acknowledged gold standard for those at the end of life and their families, and it will also pay for skilled nursing (known in this universe as the “sniff” benefit, for Skilled Nursing Facility or S.N.F.). But only rarely will it cover both at the same time, which creates a financial bind.

Rather than pay hundreds of dollars a day out of pocket for room and board in a nursing home, most families opt for S.N.F. coverage. But they pay a price in other ways: they lose the visits by nurses and aides and social workers, the comfort care, the pain relief and the spiritual support that can make hospice such a godsend, whether patients are at home or in nursing homes.