A Message to our Hospice and Palliative Care Community

NHPCO just wrapped up the first board meetings of the year (look for a follow-up report in the days ahead). Our discussions included an in-depth look at the changing nature of our field and the work that we as a hospice and palliative care community and NHPCO do. In the days since our meeting, an issue has arisen that I believe has the potential to negatively impact those that we serve.

As many of you know, for more than 30 years I have dedicated my professional career, indeed, my life’s work, to the care of those at the end of life. In 1989 I opened the Hospice of Mission Hill in Boston, one of the first hospices in the country dedicated to caring for AIDS patients – bringing hospice services to those who were being ignored. Later, as head of the Hospice of Buffalo, I broaden the scope of our services to include the provision of palliative care which increased access to quality, patient-centered care for those living with non-cancer diseases – another population whose unique needs were being ignored.

Nine years ago, when I began my tenure as president and CEO of the National Hospice and Palliative Care Organization, I brought with me my burning passion to eliminate barriers to access and ensure all people whose needs are ignored have the quality care they deserve at life’s end. So much has improved; yet, advancement has not come without change.

In our early days, hospices served primarily cancer patients. Now, less than 44% of patients served have a cancer diagnoses.

In a nation that is made up of many races and cultures, hospices are beginning to extend their reach beyond a solely white patient base.

One of out of four Americans will die in a nursing home. Those individuals – who are our parents, our siblings, our neighbors and friends – deserve the compassion and skilled care that we are uniquely trained to provide.

Society is changing; the world is changing. The hospice community is changing. When we began our work over three decades ago, who would have thought that in such a short period of time we would be caring for more than 1.5 million patients and their family caregivers every year? Could we have guessed that Medicare expenditures on hospice would exceed $11 billion?

We never would have imagined that what was once a volunteer-driven passion would become an industry that parallels other sectors of healthcare provision. There are almost 5,000 hospices in the US. Forty-nine percent are nonprofit, 47% are for-profit, and government providers make up the balance.

An article in the February 2 issue of JAMA dissects some of our community’s characteristics and presents some poorly thought-out conclusions and unsubstantiated suppositions.

NHPCO issued a press release that emphasized what I believe is the paramount consideration in any discussion of hospice care: Quality. As the study authors clearly wrote, quality measures were not a factor in their research. The article did not look at costs, variations in visit types or needs of the patients served. Yet, we’ve seen numerous articles in the media making correlations about the findings and implications surrounding profits.

While it’s not surprising to find that some in the media have turned this into a sensationalized story, it is disturbing to see the reaction among some of the providers in this field – people who I know share my passion for quality care – who are using this study to carry messages of division.

Let me be perfectly clear, I am not defending any one type of hospice provider, nor am I dismissing comments from others.

Yesterday afternoon, I spoke with the lead author of this study, at her suggestion. What initially surprised me was the dedication she voiced for all providers of hospice care in our country. She expressed surprise and disappointment at the response this journal article has elicited.

I don’t think she would mind me sharing something she said. She told me that some of the messaging she has seen oversteps the findings of the study and the message that she and her fellow researchers intended to convey in this work.

At this point, I’ve moved beyond worrying about the article and am instead concerned about a divisive and opportunistic position that some of my dear friends and colleagues have taken.

Promoting a perception that any hospice “cherry picks” patients and is motivated solely by profits is demeaning to all hospices. It dismisses the dedication and passion that motivates team members and volunteers in communities across the nation working in all sorts of programs. And it could prevent a patient and family from seeking the quality care you can offer them.

I’ve seen stellar care in nonprofits and for-profits. And I’ve seen inadequate care delivery by nonprofits and for-profits. Again, it comes down to quality. In fact, this is why NHPCO is calling for more surveys of providers, why we’ve created our Quality Partners program, and why we continue to advocate on behalf of all providers and professionals.

There is not a single provider type that can lay claim to serving only one type of patient profile. There is not a single provider type who does not care for complex and costly patients – this care is delivered by all types of providers. Ultimately, what matters is the care that patients and families receive at the bedside.

There is no room in our field for any provider that does not deliver quality care and strive to reach the highest standards of organizational excellence.

Thirty years ago when I started that hospice in Boston that cared for AIDS patients, our patient mix didn’t match the rest of the country. Twenty years ago when most hospices were serving mostly cancer patients, other hospices developed specialized programs to reach out to those with COPD and CHF. And today some hospices have built world-class programs to serve individuals with dementia and their families.

Our industry was built upon the premise that the needs of the dying were being ignored. That hasn’t changed. The field has changed, but the needs haven’t.

I am asking you to please think about the needs of those we all seek to serve, to put competition aside and to not comment on or encourage the spread of stories that seek to derail all that we can do for the dying and their families.

When people hear about hospice in the news, they don’t stop to think about tax status, or which hospice has been around for years, they just know that a trusted provider – the “angels” who cared for their family – have disappointed them. They question whether hospice has become another industry in America: Greedy, competitive, more interested in our own survival than the communities we serve. The day that those words replace compassionate, patient-family centered, and caring is the day that we have all failed.

In December 2008, NHPCO’s board of directors released a unity statement, “One Voice,” that I feel warrants revisiting. That board proclamation read in part:

One Voice Serving All Patients and Families

· Hospice and palliative care providers are unified by a common mission to provide the highest quality end-of-life care and support to patients and families facing serious and life-limiting illness;

· Our strong commitment to that mission and the people we serve transcends all differences in how we are structured, the size of our organizations, the programs we offer, and where we provide care;

· We reaffirm our collective belief in the essential dignity of every person, regardless of age, health, or social status, and our commitment to serving patients and families wherever they are with the utmost respect and care;

· Our maturing field will evolve in different ways in different regions of the country and that we will not allow challenges brought forth by such changes to compromise our strength as a united community;

THEREFORE, be it resolved that the Board of Directors of the National Hospice and Palliative Care Organization, by virtue of the authority accorded this governing body, do hereby publicly proclaim NHPCO ‘s commitment to preserving the unity of the hospice and palliative care community and emphasize NHPCO’s mission as a leadership organization providing services and expertise to all providers who share our vision of quality, thereby ensuring that all those in need of care and support will be assured of the best that humankind can offer.

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This statement of unity was more than a document we posted on the website and shared in our newsletter. This expresses consensus among our diverse community and celebrates the strength and resilience we share as a unified group of providers, professionals, and volunteers.

I would hope that the spin that is being given the JAMA article will slow to the point where we can see what our current words and actions might lead to. Capitol Hill has made clear the value they place upon the collaborative spirit that is a hallmark of America’s hospice community. It’s taken thirty years to build that reputation. How tragic it will be to see it destroyed due to a small portion of providers who misguided sense of personal opinion will ultimately harm those we hope to serve – the dying and their loved ones.

I think it’s important also to remember how the public perceives those of us in this field. We’ve learned from some of the focus group work that was done as part of our Caring Connections engagement initiative that the public does not distinguish between media reports and public messaging based on a profit status of a service provider. Yes, those of us in the field are keenly aware of it, but the significance I see providers placing in this one factor is disturbing and short sighted. When all the press about bad nursing home care was circulating, the public didn’t make a distinction based on tax status – all nursing home care was bad. Folks who go down this path are going to hurt all hospices (and future patients) in the long run.

NHPCO is here to support you, serve you, and help you and your organization fulfill what I’m sure is your ultimate mission, to care for the dying.

Don Schumacher
President and CEO