How long can you get comfort care hospice?
Important comfort care hospice fact:
Medicare comfort care hospice benefits:
- Your hospice doctor and your regular doctor (if you have one) certify that you’re terminally ill (with a life expectancy of 6 months or less).
- You accept palliative care (for comfort) instead of care to cure your illness.
- You sign a statement choosing hospice care instead of other Medicare-covered treatments for your terminal illness and related conditions.
Comfort Care Hospice Article-The End is a series about end-of-life issues
I spent the last Sunday of my father’s life sitting by his bed on the hospice unit in a small Connecticut hospital. He was dying of pneumonia, once called “the old man’s friend.” There was a nondenominational chapel down the hall, and a sheet cake in the kitchen. His hand was warm. Reassured by the quiet presence of the hospice nurses and feeling the mysterious quickening of life through his veins, I gave over to being his daughter and letting him be my father one last time.
It had been six and a half years since I’d felt purely like his daughter. When he was 79, a bad stroke (followed by a succession of mini-strokes, vascular dementia and creeping blindness) ended my father’s role as paterfamilias and transformed my mother and me from wife and daughter to exhausted caregiver and untrained medical advocate. We soon found ourselves in the maw of America’s fragmented fee-for-service medical system, a notoriously bad fit for the frail elderly. Ours is a story familiar to many families: shuttling my aged father to specialist after specialist, each focused on a single crumbling organ — his brain, his heart, his bladder, his colon, his eyes. Each ordered tests, carried out Medicare-reimbursed procedures, and rarely, if ever, talked to one another. If it hadn’t been for my mother’s nonstop caregiving and my parents’ stoic medical minimalism, I have no doubt my father would have joined the sickest 5 percent of Medicare’s patients who run up almost half of its costs.
My father, and others like him, suffered because, at the tail end of life and hospice care, Medicare continues to pay well for fix-it treatments focused unrealistically on cure and underpays for hospice care and desperately needed hospice home support. In his last six years, it paid more than $80,000, all told, for treatments that included a hernia repair, a pacemaker, and $24,000 for the injectable drug Lucentis which, sadly, failed to arrest the macular degeneration that was robbing him of sight. It covered a series of ambulance rides, emergency room visits and a hospital stay after he fell repeatedly on throw rugs and down the stairs, once breaking his wrist, falling on my mother, and leaving her black and blue from toe to hip.
But it paid very little for hospice home health aides to give my mother hospice respite and cut off, far too soon, the speech and physical therapies that helped maintain his ability to function and take pleasure in life. Under fee-for-service medicine, Medicare paid to patch him up after he fell but not to keep him from falling.
Two months before he died, my parents’ doorbell rang. The family doctor, alarmed by my father’s falls, had referred us to an outpatient palliative care team spearheaded by a nurse, a social worker and an occupational therapist. The team toured the house and advised my mother to get rid of slippery throw rugs, install a stair lift, and put a baby monitor in my father’s bedroom. They even gave her the phone number of a “lift and assist” service at the local fire department to call after minor falls, as an alternative to 911.
Finally we rested in a coordinated set of hands. The falls stopped. My mother got more sleep. When my father developed pneumonia and qualified for hospice care, the hospice nurse helped facilitate his transfer to an inpatient hospice unit.
We could have used their help for years, not months. And we were lucky, because most Medicare patients never get it.
Don’t get me wrong. Medicare as currently organized is fine for the “young old” – those in the 65- to 80-year-old range who play tennis, visit museums, volunteer at food banks, and generally manage their own lives. Resilient enough to survive a major surgery, they’re well served by a Medicare that pays handsomely for hip and heart valve replacements. Medicare’s also not bad for those with swiftly fatal diseases: a hospice benefit covers those with less than six months to live.
But for those in between, there’s a terrible gap. A little less than half of Medicare patients between the ages of 75 and 84 (and a little more than half of those over 84) are coping simultaneously with four or more incurable conditions, including slowly fatal diseases like heart failure, emphysema, kidney failure and dementia are are or should be in a hospice program. Nearly half of people age 85 and older need help with at least one basic life task, such as walking or driving that also could qualify for them for hospice. More than two-thirds of the sickest elderly end up in an emergency room each year, and over a quarter visit three times or more.
They end up there not because it’s the best place for them, but because, as the health policy expert Muriel Gillick of Harvard has written, Medicare pays poorly for primary care and supportive services except within hospice. Small problems become big, and then Medicare covers an unending cycle of expensive emergency room visits, hospital stays, and aggressive Hail Mary treatments that can do more harm than good. As a result, Dr. Gillick writes, Medicare “shapes the way we die” by funneling us toward a high-tech hospital death.
That’s why I think we need an optional new Medicare benefit. It would be called Part Q, for Quality of Life. Only those who seek it out could sign up. Democrats should love it for expanding services. Republicans should love it for expanding freedom of choice without raising costs. Those who don’t like it can leave it alone. But I’d join as soon as I turned 80 — and earlier if I developed chronic health problems.
Once I signed up, a coordinated Part Q primary care team — a concierge medical service for the 99 percent — would take responsibility for all my medical care until my death. Over time, it would help me make the transition smoothly from useful curative approaches to those focused on sustaining my quality of daily life, to “comfort hospice care only” and, I hope, a gentle death at home. Doctors, nurses and home health aides would come to the house for as long as I needed them. I’d get up to two years of hospice benefits, rather than the current arbitrary six months. And I’d save Medicare money.
To qualify for Part Q, I would promise, upfront, to forgo medical treatments that evidence shows are outrageously expensive, not cost-effective, painful to endure, and likely to extend my life, if at all, by only months.
If I have advanced, incurable cancer, I would not be eligible for second or third attempts at chemotherapy that usually extend lifespan by only a few weeks or months and can cost Medicare $10,000 a dose. If my kidneys failed, I’d voluntarily enter hospice care rather than enduring the painful, debilitating, $70,000-per-year ordeal of thrice-weekly dialysis. No feeding tube, implanted defibrillator, organ transplant, million-dollar external heart pump, or stay in intensive care for me. No colonoscopy at age 90, duplicative M.R.I., or other questionable test.
Yes, I might die too soon rather than too late. But I’d have a better shot at what the John A. Hartford Foundation’s health policy program officer Amy Berman calls “the Niagara Falls trajectory”: maintaining a high quality of life for as long as possible, followed by a mercifully rapid decline.
Small existing programs offering the benefits of Part Q without my proposed draconian trade-offs have already drastically reduced costs when targeting the sickest and most medically expensive patients. The Veterans Affairs medical system’s Home Based Primary Care Program, for instance, currently provides house calls to 60,000 chronically ill veterans annually; the medical team includes, as needed, a doctor, nurse, social worker, rehabilitation therapist, occupational therapist, physical therapist, dietitian, pharmacist and psychologist.
These seemingly deluxe, intensive teams spend a lot more time and money than medicine-as-usual on primary care and can make arrangements for home health aides, but ultimately save money by heading off avoidable crises and reducing time spent in hospitals and nursing homes. Patients give home-based primary care the highest overall satisfaction rating of any V.A. health program, and it has long waiting lists. Studies have shown it reduces costs to Medicare and the V.A. system combined by 10 percent to 12 percent. To be clear: The program doesn’t require its patients to forgo any treatment. But fragile patients who are well supported at home tend not to need to go to the hospital, and they like it better that way.
Across the nation, a handful of underfunded and idealistic physician practice groups have struggled for decades to offer similar house call programs within standard fee-for-service Medicare. Reimbursement has been so poor that most have relied on philanthropy and hospital subsidies to fill financial gaps. In a reform folded into the Affordable Care Act, however, Medicare paid financial bonuses this summer to house call programs that proved they saved money in the long run while meeting quality standards. The nine successful programs, out of 17 enlisted in the first year, included North Shore Long Island Jewish Health Care, and Medstar Washington Hospital Center in Washington, D.C. , part of the Mid-Atlantic Consortium. Medicare returned to the practices a total of $11.6 million, or 80 percent of the savings they generated, ranging from $275,000 to Doctors Making House calls of Durham, N.C., to $2.9 million to the Visiting Physicians Association of Flint, Mich. (The other eight programs either did not meet quality standards or did not sufficiently reduce overall per-patient costs.)
I wonder how much suffering might have been avoided if a home-centered hospice program had been available to my parents in their final years. I hope that 10 or 20 years from now, I’ll have a chance at something better. By then, I hope, priorities in Medicare will have shifted, programs like these will serve millions, and some version of Part Q will be in effect. At the age of 84, I don’t want to shuffle into an emergency room as my father did, suffering from a broken wrist, when what I need most is physical therapy at home, respite for my caregiver, and five cents’ worth of advice to take up the throw rugs.