Dollars for Dying

A recent article in the Huffington Post focused attention on an often neglected part of the American health care scene, hospice. Unfortunately, by relying largely on interviews, chiefly with angry and very vocal family members of patients who died while enrolled in hospice, and very little on data, the article distorts reality.

The article:  “..Dying became a multibillion dollar industry.”

The reality: Just under 2.5 million Americans die each year, three-quarters of them over age 65. It’s about time we started to spend money on taking care of them competently and compassionately. Hospitals are also a multi-billion dollar industry. Is that bad?

The article: “Many providers are imperiling the health of patients in a drive to boost revenues and enroll more people;” i.e., the problems are due to for-profit hospices.

The reality: 63% of the 5500 hospices in existence today are for-profit, along with a growing proportion of hospitals and medical practices, but despite several studies comparing the quality of for profit hospices to that of not-for-profit hospitals, it’s been impossible to pinpoint any important areas where ownership status predicts quality. A study by Wachterman et al in JAMA in 2011 showed that the median length of stay was longer in for-profit hospices (20 days vs 16 days), largely reflecting a larger proportion of patients with dementia and a smaller proportion of patients with cancer. But does this demonstrate poor quality? Don’t patients with Alzheimer’s disease deserve to be enrolled in hospice? Isn’t the median length of stay in hospice widely held to be excessively short, with 35% of patients dying within a week of enrollment? And don’t other health care institutions deliberately offer some lucrative services (think hospitals providing a transplant program) in order to subsidize money-losing services (think mental health programs?) What’s so surprising or unfortunate about for-profit hospices having the business savvy to compensate for the low per diem reimbursement (Medicare paid hospices $153/day for home care in 2012, which was supposed to pay for nursing visits, home health aides, social work care, medications, and supplies)? Another study in 2011 reported the results of a national survey of hospice programs and found adherence to National Quality Forum measures of quality to be high, with for-profit hospices doing better in some areas and not-for-profit hospices in others. 

The article: Hospice representatives “troll the halls” of hospitals in search of patients.

The reality: Since the seminal SUPPORT study of 1995 documenting the large proportion of American hospitalized patients who die in pain, burdened by invasive and ultimately non-beneficial care, there has been widespread acknowledgment that Americans receive too little palliative care. One study done in nursing homes found that when attending physicians received a note informing them that a patient met the criteria for hospice, the rate of hospice referral soared from 1% of eligible patients to 20%. Are reminders to physicians overly intrusive? Is having a hospice representative available at the hospital to discuss their program with patients promptly when called by the attending physician aggressive? Or does it facilitate a quick and smooth transition from curative care to comfort care?

That said, anyone who has taken care of patients enrolled in hospice is aware that the quality of hospice care is not uniformly excellent, despite surveys revealing that 75% of families with a relative under hospice care at the time of death rated quality as excellent, compared to only 49% of families whose dying relative was cared for in the hospital. What can we do to further improve the hospice experience?

Three approaches come to mind, regulatory, economic, and educational. The regulatory tack, advocated in the Huffington article, is reasonable—if exercised cautiously. Nursing homes were transformed from unsanitary firetraps warehouses for elderly individuals to sterile, medicalized facilities. They are now the most highly regulated American industry; some have claimed more tightly regulated than nuclear power plants. In the process, they stopped being homes and became institutions. The majority of hospice care is delivered in the home. The challenge will be to design regulations that promote quality and prevent abuses without destroying the essence of hospice care. 

The economic strategy is what MedPAC (the Medicare Payment Advisory Commission) advocates. At MedPAC’s recommendation, the ACA includes a provision allowing Medicare to change its current uniform daily rate to a higher rate for the first few days and the final days a patient is enrolled in hospice, with a lower rate for the intervening days. This will make enrolling patients with dementia less financially attractive, thus ensuring compliance with hospice’s current eligibility criteria, though whether this will improve quality is questionable. 

The educational strategy, really an approach to communication, translates the claim that hospices enroll people who “don’t  belong in hospice” into a concern about poor communication. I have watched hospital discharge planners and hospice representatives promote hospice to patients. They describe all the services that hospice will provide: nursing visits, home health aide hours, respite care, bereavement services, prescription medications, and so forth. They typically say less about what hospice does not provide, such as (with the exception of so called open access hospice) palliative radiation or palliative chemotherapy or blood transfusions. When I broach hospice care with a patient, I start by determining the patient’s overriding goal of care. Is it to live as long as possible? Is it to focus exclusively on comfort? Or is it somewhere in between—mainly wanting comfort but being willing to put up with certain kinds of unpleasant medical treatments in exchange for living longer? Only once I know what the patient wants—and ideally am satisfied that the family accepts the patient’s perspective—do we talk about the best way to achieve their goals. If hospice is the best way, then I tell them so. If it’s not, we discuss what approach would be most conducive to their goals.

Hospice is far from perfect and my natural tendency is to be suspicious of for-profit health care. But what's wrong with hospice care and how to fix it are not quite so obvious. We need more data and better analysis before we act.