08/01/2011 05:50 pm ET Updated Oct 01, 2011

The Ethics Of Hospice Care

Bill wanted us to know his tears were not of sadness but of joy, as he stood by the bedside of his wife, who was in the final stages of cancer. "I've been delightfully surprised," he said of the level of care and compassion she and the family received in hospice. "I get to spend more time with her. I'm just so grateful."

This year, VNSNY Hospice Care will help close to 6,000 New Yorkers like Bill's wife spend their final months at home with family, alleviating the pain, reducing discomfort, treating symptoms and enhancing quality of life. Hospice nurses, social workers and bereavement counselors provide family members with support and resources to help them navigate the great challenges of dying, death and bereavement.

Because I have seen the profound comfort hospice brings to patients and their families, I am extremely gratified that more and more people are taking advantage of hospice services at the end of life. The number of hospice patients in the United States has more than doubled in the last decade -- from about 700,000 patients in 2000 to more than 1.5 million patients in 2009, according to statistics from the National Hospice and Palliative Care Organization (NHPCO). In 2009, nearly 42 percent of all deaths in the United States were under care of a hospice program.

Growth in Care, Growth in Oversight
With this growth comes increased scrutiny. The Office of the Inspector General (OIG) of the U.S. Department of Health & Human Services recently announced it is investigating fraud, waste and abuse in the hospice industry, especially as it relates to patients who are covered by the Medicare hospice benefit (which accounts for about 83 percent of hospice patients, according to NHPCO).

Any industry that has regulations -- ours has plenty and rightly so -- will have people and institutions that flout those regulations. Among the key regulations at issue now is how long some patients are living in (and therefore covered for) hospice care. The Medicare hospice benefit is available when the patient's physician determines that the patient's disease at its current stage typically claims life within six months. While patients can certainly outlive the prognosis (and be recertified for care), the OIG is investigating organizations that have a disproportionately high number of patients who remain under hospice care for more than six months -- sometimes many more.

As the OIG investigates these so-called "long-length-of-stay patients," it is worth noting that the average length of hospice care, for VNSNY and nationwide, is 60-70 days, far below the six-month timeframe. And the median length of stay, which has not budged in years, is about 20-22 days.

Even if hospices are acting in good faith -- and I do believe the vast majority are -- patients can outlive a six-month prognosis. There are no ironclad, evidence-based measures of prognosticating how long someone will live with a life-limiting illness. Life expectancies for cancer patients tend to be the most accurate, and indeed there are few long lengths of stay among our cancer patients (who make up about half of VNSNY's patients and about 40 percent of hospice patients nationwide). For cardiac and pulmonary patients, as well those with end-stage dementia and other chronic conditions, life expectancy is much harder to predict.

The OIG, and a Bloomberg News story that followed, have focused on hospice care provided in nursing homes -- intimating that this is an unethical practice. It is not. In fact, many terminally ill persons who reside in nursing homes are alone and distant from family and friends, compared to those at home with a family caregiver. These patients derive benefits from hospice care: relief of physical distress, as well as critical emotional and spiritual support. In addition, the collaboration of the hospice and nursing home staff creates an important partnership that has positive outcomes for both agencies.

A Call for Transparency
The media attention surrounding this issue has been equal parts heat and light. I agree with Brian Lehrer, host of WNYC's Brian Lehrer Show, who introduced his segment on the latest hospice lawsuits and investigations by saying: "Hospice generally has such a good reputation. Of course we're going to get the information out, but ... I don't want to turn people off to something that has helped so many."

I applaud his continuing the conversation, which included the writer of the Bloomberg News story as well as a number of callers -- both hospice workers and family members of patients -- most of whom had extremely positive experiences with hospice. This mirrors the anecdotal and empirical evidence on hospice care. It has long been known that hospice care improves quality of life, and recent studies have also shown that palliative care can also help patients live longer.

We are a mission-driven industry, and I wholeheartedly agree with J. Donald Schumacher, NHPCO President and CEO, who believes:

The overwhelming majority of U.S. hospices are committed to a shared vision to bring the best that humankind can offer to all those individuals facing serious illness, death and grief. Within that vision, however, is the duty of each provider to do the best job possible to ensure that every single patient day of care is within all regulatory and legal limits. NHPCO will not support any provider who fails to strive for the highest level of compliance and practice.

Can some good come out of this increased scrutiny? Absolutely. As in any industry, transparency is the best policy. I would welcome more frequent site visits by the Centers for Medicare and Medicaid Services (CMS), which oversees the Medicare hospice benefit. Come talk to our patients, examine our charts, look at our numbers. The best counterweight to finding that a few organizations are flouting regulations is to prove that the rest are complying -- bringing much-needed care to patients and their families during one of life's most trying times.