I love hospice, because I’m old enough to remember when dying patients ended up in hospitals, or we docs would try to make house calls and try to get neighbors to help give adequate care in their homes. But with hospice, nurses helped me care for my patients by checking them frequently at home, and getting the narcotics and equipment they needed to stay comfortable.

There are also “in patient” hospices, which care for the dying patient by stressing comfort care and quality of life, not overdoing things which won’t prolong life very much.

Originally, hospice care was for those with cancer, but as time went on, it has included patients with terminal lung disease (emphysema, cystic fibrosis), terminal liver, heart, or kidney disease, or even HIV. 1.3 million Americans used some type of hospice service last year, many of them being able to stay at home during their last days, while getting adequate symptom relief and supportive care.

The “down side” of hospice is that it is time limited: Only caring for those with six months to live. Live longer, and you’re not covered. In fact, you and your doctor could be sued for “fraud” for guessing wrong. As a result, often patients are not referred early, where a lot of pain and suffering could be eliminated, but only when they are literally at death’s door.

But the bad news is that in the latest budget, Hospice care won’t get a larger budget.

 the most recent budget package sent to Congress specifically asked for drastic cuts in hospice reimbursement rates. Together, two proposed approaches would cut rates in excess of 15 percent. Such an action, if approved by Congress, would cut hospice reimbursement by more than $5 billion.This cut would dramatically impact the care that hospices around the country…

The National Hospice and Palliative Care Organization (NHPCO) explains it this way:

By phasing out the annual adjustment that is applied to the hospice wage index over the next three fiscal years, CMS will be cutting the reimbursement levels hospices receive for the care they provide to terminally ill patients and their family caregivers.

In recent years, regulators have been looking closely at hospice reimbursement levels and have expressed concern over the growth in hospice expenditures — which are $11 billion per year. …

So the cuts will mean  less money to go around to care for these patients at a time when there are more and more people using the service. Fundraisers will help, but it still will be a problem to make ends meet.

But the real fear among doctors and caregivers is that some beancounter will decide Grandmom has lived over six months, and will stop paying for her care, meaning family will have to figure a way to pay for it…and sometimes the loss of care means relapse in symptoms or disease and the patient ends up dead.

This happened to one of my alcoholic patients with terminal liver disease. No insurance, and after a nightmare of a hospitalization he decided no more hospital. So we put him on hospice, and with the supportive help visiting him at his home, he sobered up and got better. Six months later, he was released from hospice care, and alas,  a couple months later, fell of the wagon, and reentered the program and this time ended up dying at home (refusing hospitalization again).

If he had continued getting his biweekly nurse visit, would he have reverted to his drinking? Would his terminal illness (sepsis from a neglected leg wound) have been found earlier and treated? I don’t know. It just made me sad.

Finally, although this budget can be blamed on President Bush, the Clintons weren’t much better.

Hillary’s health care plan back in the early 1990’s would have allowed denying care if that care “didn’t improve one’s quality of life”, which was a slippery slope disaster waiting to happen.

Then in the mid 1990’s the Clinton administration started getting strict about the regulations being followed by the home health industry (including hospice), the program was ironically called “Operation Restore Trust“. They were looking for “fraud”, and that included not just living too long for hospice care, but getting home health to visit you when their experts thought you’d be fine.

The OIG determined that 44 percent of the claims made by another Florida HHA for home health care services for the year ended December 31, 1993, did not meet Medicare reimbursement guidelines. Twenty-five percent of the claims were for services which, in the opinion of medical experts, were not reasonable or necessary; 14 percent were for services to beneficiaries who were not homebound; 3 percent were for services which physicians did not authorize; and 2 percent were for services not provided.

Sounds terrible, doesn’t it?

The problem is often we have home health to bathe grandmom in her Minnesota home, but she still can make it out to bingo using her walker on her good days, when it’s above 20 degrees and someone picks her up at the door. But according to the OIG, that care is a fraud because she’s not “homebound”.

Or maybe checking a heart patient, but with the nurse’s supervision, their heart failure improves, so they aren’t eligible.

So home care stops, and a lot of these people end up with complications because they mix up their pills or stop taking them altogether.

But in hospice, it’s worse, because the decision is based on a time line, and instead of seeing hospice as a way to keep people who don’t want machines and tubes comfortable at home. Cutting the money at six months is bad enough, but cutting the budget for dying patients is even worse.

Human Rights lawyer Wesley Smith has the last word on this cynical ploy:

Why go after hospice? Because it is politically weak. So why not save a few billion on the backs of dying people?

Why not, indeed.


LINK is a page with advice on how to contact your congressman.


Nancy Reyes is a retired physician living in the rural Philippines. Her website is Finest Kind Clinic and Fishmarket, and she writes medical essays at HeyDoc Xanga Blog

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