How We Define Death And The Future of Hospice.

Larry Beresford challenges the latest meme that hospice patients have declined in number recently. He notes that, among others, Tim Cousounis at Palliative Care Success and the Urban Institute's Howard Gleckman, who wrote a recent article for Kaiser Health News, have examined hospice enrollment and concluded the same thing. It is in decline.

The reasons they cite are varied but predictable: a bad economy makes doctors hesitant to refer profit-generating patients to hospice where the income derived from costly curative treatments naturally declines; Medicare rules require that a patient have less than 6 months to live before going into hospice and sometimes patients, particularly chronically ill ones, live beyond that time frame, a situation Medicare would like to avoid; and of course, the constant challenge of image that hospice faces as a place where one goes when they have "given up" continues to prevent ever-growing enrollment.

From Beresford's latest blog post:

I contacted a couple of leading hospice executives to ask them if the declining enrollments trend is true. One said that hospice patient census fluctuates up and down for all sorts of reasons, but that his agency's is up, after a sharp drop in 2008. But Samira Beckwith, CEO of the highly successful Hope Hospice and Palliative Care in Fort Myers, Florida, responds, "I think that everything [Gleckman] says in his article is true." One of the problems, she says, is that America's hospices still have not successfully communicated the idea that hospice care means "living" as fully and as well as possible until death comes. Instead, Americans have learned a little bit about hospice and believe it means "they have to die really soon if they say yes."

The problems of misunderstanding, misconceptions and mistrust of hospice care by people confronting hard choices at the end of life have been around throughout the history of hospice in America, even as the number of people receiving hospice care has steadily grown, up to 1.45 million in 2008. Physicians' reluctance to bring up the "H" word with their terminally ill patients has been well-documented. The second-guessing of hospices' enrollment decisions by Medicare has also intensified recently, but is not a new phenomenon. A similar round of government scrutiny occurred in the mid-1990s. And still the trends of the number of hospices, number of patients served and total Medicare outlays have pointed steadily upward since the first U.S. hospice opened in 1974 and since Medicare began paying for hospice care in 1984.

Beresford's conclusion is that perhaps this ebb in enrollment is really a reflection of market capacity:

The MBAs who run fast food or pharmacy chains are taught that when your company or your industry stops growing, it is already dying. But is that the right model for a service designed to promote compassionate, individualized, quality of life-promoting care for dying patients and their families? Shouldn't hospice's goal be to offer a meaningful option to all those who might need it and want it, and who might qualify, according to the rules of those who would pay for it, as being terminally ill -- rather than just continuing to grow? And if there is a current decline in referrals, given the recent proliferation and rampant competition of mom-and-pop hospice providers, particularly in certain metro areas and in the states of Alabama, Mississippi and Oklahoma, perhaps what's happening now is what the economists might call a necessary market correction.

I tend to disagree with Beresford and here's why: hospice is really the only option for patients who wish to die at home and so, as long as statistics continue to show that a majority of Americans wish to die at home (80%) and that most continue to die in facilities (75%) there's room for hospice to grow.

Whatever strides the hospice community has made in the past three decades or so of convincing society that the patient can decide where they die (and increasingly, when), the prevailing institutions in our culture - the church, the medical industry, and the state - haven't done much to change the tone of discussion about death. Only in Oregon, where the state population has had a long and in-depth conversation about end of life care (primarily because of the successful initiative to legalize assisted suicide) is there a more sophisticated understanding of end of life care options. I suspect that, as statistics in 2007 showed, that Oregon continues to lead the country in hospice enrollment. A couple of other factors that are working against hospice enrollment:

1. The rise of "pro-life" opposition to end of life choice (as conveyed through fear of "socialized" medicine, removal of artificial nutrition and hydration, end of life care planning (DNR, living wills, medical proxy designation), and aid in dying) and simple statistics that show the devoutly religious are more inclined to seek aggressive, futile care at the end of life are only one front that prevents society from viewing hospice as a healthy, life-affirming choice.

2. The medical industry has absolutely no incentive to direct terminal patients to hospice. Doctors are entrenched in a culture that, as Joanne Lynn says, puts patients on a "glide path" that involves aggressive treatment until death, as though death is a "failure" of medicine that can be cured. Doctors have only begun to be trained in medical schools for end of life care discussions (and continue to not be reimbursed for the necessarily lengthy discussions); palliative care is growing but still in its infancy; doctors tend to grossly over-estimate the time a patient has before death (hence delayed and briefer hospice enrollment); aggressive care is revenue for medical institutions and doctors; the conservative AMA and other medical associations (with the exception of many nursing organizations) have resisted society's call for greater improvements to end of life care. As well, advancements like 911, CPR, and the ability to lengthen a patient's life have prevented serious discussion about "quality of life." "Doing everything we can" to save a patient is the default, whether it lengthens the patient's life or keeps them comfortable - or not.

3. As we've seen during the year-long health care debate, the state has done little - either at the state or federal levels - to promote or legislate sound end of life care laws. I can think of only a handful of state laws that promote end of life planning. Veteran's Affairs, the largest health care provider in the US, has made commendable, great strides in meeting patient's needs and wishes in the last months of life but at the end of last year we saw them come under attack for distributing a planning guide, then termed the "death book." This noise, however illegitimate, makes institutions, health care providers, and doctors hesitant to discuss these issues.

In essence, the media and society have allowed fear-mongering and inaccurate accusations to shut down the end of life discussion.

The entire non-sensical circus that stemmed from the health care debate - death panels, the state's gonna euthanize you, etc. - has had an effect. The environment we're in at the moment (a political battle that has less to do with patient care than politics) has had a dampening effect on legislative efforts to enforce good end of life care planning.

The powerful Catholic church, a strong opponent of removal from ANH and of assisted suicide, is in a position where they must articulate nuanced and complicated arguments for hospice (an organization founded by the Catholic Cicely Saunders and long affiliated with the Catholic church) if they want to support hospice at all. For their political purposes, it is much better to push "all life is sacred" than "you're bound for a better place," both rhetorical constructs that sound true enough but work to As well, the church is firmly under the influence of a staunchly conservative leadership right now. And, as the second largest operator of hospitals in the US, they too have an interest in keeping patients in hospitals, receiving aggressive care. Their force and influence was proven during the health care debate.

And lastly, death just isn't what it used to be. Death used to mean the almost simultaneous end of a heart beat, breathing and brain function. In the past 30 or so years medicine has figured out how to maintain the first two indefinitely. And brain function, as we've seen with the cases of three young women - Karen Ann Quinlan (1985), Nancy Cruzan (1990), and Terri Schiavo (2005) - is increasingly considered not a suitable qualification for death.

But there is hope for hospice. Baby boomers are increasingly greying and, as they have changed every other institution their generation has moved through, end of life care is bound to be altered by their increasing need of it. As well, our health care system is not equipped for such a large influx of elder patients. The threat of economic destruction should be enough to push US society and government to reconsider how we care for those who are dying. Hospice will play a vital role in that reconsideration.