Hospice is a topic with which I’m somewhat familiar. From a personal standpoint, hospice was there in the days, weeks, and months leading up to my father’s death from lung cancer. The team of nurses that worked with my parents was, from what I’ve been told by my mother, a “godsend”. The hospice nurse that visited my dad everyday was the one who called to tell me that I needed to come home because my dad wasn’t doing well. She had done all she could to make those terminal months as painless as possible, and someone from the hospice was always available by phone for my mother. I wasn’t around much during those last few months, but from what I can tell, my mother was comforted knowing that she was not my dad’s sole caretaker.
Hospice is something we talk about quite a bit in medicine. Common opinion is that when facing the end of life, Americans do not actually want the aggressive therapy they so often receive. Nearly 70% of Americans report wanting to die at home surrounded by family than in a hospital. Over 80% of patients report wanting to avoid hospitalization and intensive care when they are dying. From a medical perspective, hospice should therefore be the preferred method of treatment by patients. Yet the reality is far different. Almost half of Americans die in a hospital, a figure that increases by 20% if you include nursing homes and long term care facilities. Americans face increasingly complex and intensive care toward the end of life, with increasing hospitalizations and longer ICU lengths of stay.
In health policy circles, hospice is often viewed as one way to contain spiraling health care expenditures. Medicare spends nearly 30% of it’s massive budget on the last year of life of its beneficiaries – and that’s not on hospice care. By keeping people out of the hospital, hospice decreases the costs of health care by avoiding emergency room visits and expensive intensive care unit stays. Oddly enough, hospice may also improve the quality of patient’s lives in those final months. There is even evidence to suggest that patients enrolled in hospice live longer than their counterparts who continue to pursue aggressive therapy for terminal diseases.
Though hospice enrollments have increased over the years, hospice participation still remains absurdly low at just over 40% of deaths from terminal illnesses. Low hospice enrollment has traditionally explained by the unwillingness of patients and family members to “give in”, by physicians not wanting to broach the subject of death, or more sinisterly, not wanting to lose revenue by no longer treating patients. But Paula Span of The New York Times points out a reason that largely goes unknown about the difficulty of enrolling in hospice – many hospice programs restrict access to the crucial end of life service. But why?
Span points out that when Medicare began paying for hospice, the insurance program required eligible patients to forgo life-sustaining treatment in order to qualify for hospice. Since patients had a terminal illness, defined as less than 6 months (180 days) to live – any treatment would be considered futile. No chemotherapy, no intravenous nutrition or tube feeds, no blood transfusions. This is where medicine and health policy once again clash. Many of these treatments are now considered palliative in nature – radiation and chemotherapy to shrink tumors causing pain or tube feedings to improve quality of life. But Medicare’s payments are so low (on the order of $140 a day) that most hospice programs cannot afford to take on patients for whom Medicare will not reimburse. Most of the private insurance companies follow Medicare’s lead.
Ironically, hospice programs that allow patients to continue life-sustaining treatments find that most patients forgo these treatments altogether, and the savings are substantial. In fact, in 2004 insurance giant Aetna decided to perform an “experiment”. Rather than requiring people to give up life-sustaining treatment, they allowed terminally ill patients to continue treatment when they enrolled in hospice. A two year study of their concurrent care approach found that enrollment in hospice jumped from 26 to 70%, and yet patients enrolled in the program visited emergency rooms half as much and dropped their use of hospitals and ICUs by more than two thirds. The bottom line for Aetna? Costs for these patients fell by almost 25%. The majority of these savings were realized in terminal cancer patients.
So maybe our nation’s collective reluctance to enroll in hospice is not because we are afraid of death or because our physicians do not want to destroy hope. Maybe all it boils down to is health policy standing in the way of good medicine all in the name of saving money. And maybe, just maybe, health policy may be standing in it’s own way of showing that improving quality and reducing costs are not mutually exclusive events. But in the end, even if we end up not saving a dime… should we not be providing better care?
For more information on hospice and Aetna, read Atul Gawande’s piece “Letting Go“