Larry Beresford

A report card for hospices

Through the complex process of reforming the American health care system, both within Congress and outside of it, one of the repeated themes is the need for the providers of health services to be more "transparent" -- to openly share their processes and outcomes of care with consumers, payers and the public.

Often the term "report cards" is applied to initiatives of publicly reported, searchable, comparable quality data on the actual performance of health providers. Such report cards allow shoppers for health services to make more informed choices among competing providers. Examples include the federal government's online Hospital Compare, Nursing Home Compare and Home Health Compare. An Oct. 27 Wall Street Journal article highlights growing evidence that public report cards can elevate the quality of health care overall.

Where does America's $12 billion hospice industry fit into this picture? Vaguely, at best, it would seem. There is no national public database of mandatory, comparable, uniformly reported hospice quality performance data like there is for these other provider categories, even though arguably the choice of a hospice is the most important health care decision of one's life. There is little publicly accessible hospice quality data of any kind, except for a fairly unrigorous initiative in Florida to report Family Evaluation of Hospice Care (FEHC) data from satisfaction-with-care surveys given to the surviving loved ones of hospice patients after the patient's death. An initiative by the American Hospice Foundation (www.americanhospice.org) is working toward a hospice report card of performance measures relevant to consumers, but because it is voluntary for hospices, it has been slow going for this pilot project to work its way toward the public domain.

My Growth House colleague Les Morgan earlier today posted a blog piece arguing that it is time for "Hospice Compare" . The government already collects lots of data from hospices, in return for the billlions it spends on their care. Hospices question the validity of some of the government's data, even though they are its source.

They also point out that hospice is different than any other health care provider, in that its consumers are all expected to die in the near future. Otherwise they wouldn't be eligible for hospice care. Therefore, conventional medical outcomes measures of mortality and morbidity would be of dubious value, if not downright misleading for evaluating a hospice's quality. This argument would carry more weight if America's hospices were more forthright and active in developing their own valid, hospice-specific measures of quality and voluntarily sharing them with the public. However, as I talk to providers across the country, this is not a high priority -- transparency be damned.

The growing competition between hospices sprouting up in some communities seems to make them want to be less transparent, rather than more. But I wonder what would happen in a city like Atlanta or Phoenix or Oklahoma City, where dozens of agencies clamor for hospice business, if a few intrepid hospices stepped forward and started sharing data on their performance -- warts and all. After all, hospice workers are only human and thus guaranteed to make mistakes, at least occasionally. I wonder whether the public would reward such candor, and whether that might shame other hospices into getting on board with this transparency thing.

hospice in national health care reform

While the complex drama of national health care reform plays out in Washington, DC, the little ($12 billion) hospice industry is addressed in the fine print and America's hospices are closely following the outcome of this effort to provide health insurance for most Americans. In the draft reform package passed by the Senate Finance Committee on Oct. 13, one of the multitude of provisions to try to control health care cost escalations is a "productivity factor adjustment" to reduce annual inflationary rate increases for hospice providers under Medicare and Medicaid.

The National Hospice and Palliative Care Organization's response is that "two cuts are too many," since a previously adopted gradual phase-out of hospice's Medicare "Budget Neutrality Adjustment Factor" over the next seven years already takes a bite out of hospice payments. According to a recent NHPCO legislative alert, Sen Ron Wyden (D-OR) has been working with Finance Committee Chair Max Baucus (D-MT) to try to negotiate some relief from the proposed rate cuts for hospice providers.

But the huge reform package includes other provisions relevant to hospices, such as a 26-site Hospice Concurrent Care Demonstration Project under Medicare. This would test simultaneous approaches to receiving hospice and curative treatment that don't require seriously ill patients to give up the prospect of cure in order to qualify for the palliative support of hospice care. This conceptual model has been espoused by palliative care advocates and tested by a variety of demonstration projects of the Robert Wood Johnson Foundation's Promoting Excellence in End-of-Life Care. A similarly concurrent program of hospice care for children is included in the bill. That approach has been piloted in a number of states through the Program of All-Inclusive Care for Children.

The Senate Finance reform package has obviously been informed by recommendations to Congress in March by the Medicare Payment Advisory Commission (MedPAC), which documented concerns about the "accuracy" and appropriateness of long-stay admission practices by some hospices. The bill would require a personal visit to hospice patients by a hospice physician or advanced practice nurse at the time of recertification that the patient continues to be terminally ill and thus qualified to continue receiving hospice coverage. It also requires improved data collection through hospice claims and cost reports to inform future changes in the hospice payment system in order to improve its accuracy, and calls on the Secretary of Health and Human Services to establish Medicare hospice quality reporting.

According to the Finance Committee's September 9 Framework for Comprehensive Reform, a major aim of the reform bill is to put providers, including hospices, on the path toward value-based purchasing, with providers who do not successfully participate subject to payment reductions. The larger question in all of this data collection is when America's hospices will arrive at the point of national public reporting of comparable quality data about their services, just as other health providers already experience through Medicare programs such as Hospital Compare, Nursing Home Compare and Home Health Compare.

Quality experts have warned that some kind of similar "report card" of comparable quality data was inevitable for hospices as a step in the direction of enhanced health care "transparency" for consumers and payers. The real question is why hasn't it happened already, and will America's hospices be prepared for this kind of quality transparency when it does arrive?

Advance Directive Wish List in Congress

In the shadow of the momentous national health care reform debate now underway in Congress, a number of collateral bills have been introduced aimed at strengthening and extending the use of advance care planning and advance directives to help consumers spell out their values and preferences for aggressive, life-sustaining medical treatments in some future crisis when they have become incapacitated.

One of the recurring themes of the larger reform discussion has been the high cost of "end-of-life care," although in Congressional hearings that term generally refers to the disproportionate costs of medical care for Medicare patients in their last two years of life, not to specific care models like hospice or palliative care.

The advance directive bills now before Congress have received endorsements from groups like AARP, the Alzheimer's Association and the National Hospice and Palliative Care Organization. That is not surprising, since these bills collectively contain a variety new benefits and funding streams that could benefit end-of-life care advocates and providers -- a real wish list for innovations in end-of-life care.

Sen. Jay Rockefeller (D-WV)'s Advance Planning and Compassionate Care Act emphasizes improved consumer information about advance care planning and EOL care, improved provider education and training, portability of advance directives across state lines, coverage for advance care planning consultations, grant funding for new and innovative approaches to advance care planning such as electronic registries, improved consumer access to hospice and palliative care, and establishment of a National Center on Palliative and End-of-Life Care at the National Institutes of Health, with support for research on EOL quality measures.

The Senior Navigation and Planning Act, introduced by Sen. Mark Warner (D-VA), proposes a transitional care benefit, administered by hospices, for patients with a terminal illness and life expectancy of 18 months or less. This benefit includes counseling for patients and families, respite care, education to increase public awareness of end-of-life planning, financial incentives for hospitals and SNFs to offer an accredited palliative care program, and a requirement that doctors offer certain patients information about advance directives and other planning tools or risk losing Medicare reimbursement.

Bills in the House duplicate provisions of these packages, cover POLST consultations (physician orders for life-sustaining treatment, a newer model of care planning for patients who are already seriously ill), or offer refundable tax credits for advance directives.

Do advance directives really make a difference in the time of need? Certainly some in the medical ethics literature have questioned their efficacy in preserving patients' previously expressed values and preferences during the high cognitive fog of a life-threatening medical crisis. Living wills in particular have been questioned. Naming a proxy through durable power of attorney for health care decision-making may be more helpful, but only if the person executing the document takes the trouble to make his or her wishes and values understood by loved ones, proxies and primary care physicians.

However, the advance directive is a tool that most people can understand, even if imperfectly, and that can be taught through high-profile community education campaigns to make those participating feel that they have done something important that might be helpful someday. If Congress passes any of these advance directive bills, advance care planning could become a real growth industry.

Is hospice paid too little -- or too much?

Where America's hospices fit in the national health care reform dialogue is yet to be determined, although a glimpse was offered in the Congressional Budget Office's recent "scoring" (estimating) of the cost implications of provisions in the House of Representatives' version of a comprehensive health care reform bill. According to the National Hospice and Palliative Care Organization (NHPCO), the House Tri-Committee health reform proposal applies a "productivity factor" to hospice's annual Medicare inflationary increases, based on a presumption that health care services like hospice are getting more efficient and productive over time.

Based on CBO's findings, NHPCO estimates that the productivity factor for hospice care means a 3.6 percent reduction in Medicare hospice rates, which could amount to $2.3 billion in lost revenues over five years or $9.8 billion over 10 years. NHPCO calls this situation "cuts on top of cuts," since another cut in hospice rates, first proposed by the Bush Administration but postponed for a year, is now scheduled to be phased in starting October 1.

Hospice advocates are walking a fine line, trying to argue against these "cuts on top of cuts" while acknowledging that health care reform for all Americans inevitably must include some belt-tightening for most -- if not all -- categories of health providers. Hospice is in a more sensitive position because some, including the Medicare Payment Advisory Commission, have wondered if hospice's benefit structure under Medicare encourages inappropriate utilization and indeed if hospices are being paid too much. Anecdotal reports of double-digit profit margins realized by some hospices need to be balanced against the significant community fund-raising other hospices must do just to keep their doors open.

The online version of the New England Journal of Medicine on June 29 posted an article by John K. Iglehart, founding editor of Health Affairs and national correspondent for the Journal -- in other words, a health policy commentator who is not to be taken lightly. Iglehart reviews the design of the Medicare hospice benefit and the findings of the recent MedPAC report to Congress, especially related to increasing lengths of stay in hospice care.

Then he points out -- surprise! -- that much of the recent dramatic growth of hospice spending in Medicare is "largely owing to the entry of for-profit hospices." And here lies the man-bites-dog quality of the article -- as it has been for many casual observers of America's hospice industry: Hospice has a large and growing for-profit sector. Hospice corporations are traded on Wall Street. This incredibly compassionate, spiritually inspired service for America's vulnerable dying patients is often (roughly half of the time) provided by profit-making entities!

That this fact should be surprising suggests America's $10 billion hospice industry is not very well understood. For-profits have been part of the hospice movement since its early days, just as there are for-profit hospitals and doctors' groups. And there is little in the research to indicate that the for-profit hospices as a group are providing a lower quality product than their non-profit peers.

Iglehart notes that MedPAC's recommendations to Congress, along with NHPCO's advocacy, have proposed that changes in the hospice benefit should be done in a budget-neutral fashion. But he concludes that if Congress decides to take up reform of the hospice benefit, it is more likely to happen "in the context of intensified efforts to slow Medicare spending." Stated another way, it may be time for some serious belt-tightening in health care -- even for America's hospices.

The Hospice Conversation

Several recent articles and blog postings have discussed the emotional barriers to hospice access for people with terminal illnesses, including a just-released Archives of Internal Medicine study (Huskamp et al, http://tinyurl.com/qnj242) about conversations with physicians regarding end-of-life care prospects and options. This kind of research can help us understand some of the nuances of such encounters at the end of life, but I wonder if they take us closer to solving hospice's Flying Dutchman status in our society.

The Archives study examined charts of 1500 patients with metastatic lung cancer -- ideal candidates for hospice -- 4 to 7 months after diagnosis to see if there was any discussion of hospice care. Only half of the time was there any. The New Old Age Blog by Paula Span in the New York Times last week contrasted the benefits of hospice care with the common tendency to wait too long for enrollment -- and thus miss out on some of those benefits.

Another Times blogger, physician and author Pauline Chen recently wrote about how hard it was to have end-of-life conversations with her mother-in-law, but how important it was in the end. Chen also cited a JAMA article (Wright AA, et al, 2008 Oct. 8, 300: 1665-73) discussing how these kinds of discussions with terminally ill patients affect their quality of life. Patients who had discussions about end-of-life with their physicians were found to have better quality of life -- and so were their surviving caregivers. Which is an almost perfect summation of the philosophy behind the hospice movement.

There is a tendency sometimes to want to blame physicians, or health plans, or Medicare, or the denial of patients and families for the delays and barriers and misunderstandings, and yet I think the problem runs much deeper -- to the heart of our culture. Samuel Johnson famously commented, "When a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully." Once upon a time, doctors told patients when it was time to get their affairs in order -- because that was considered important for a host of practical, social and spiritual reasons. Ira Byock has written powerfully about the end of life as a phase of life with its own developmental tasks and opportunities for personal growth.

And yet for many people, those concepts seem alien. It is easier to avoid, evade, change the subject or grasp for some kind of familiar conceptual solid footing when it comes to that hanging in a fortnight. We have so few widespread cultural models of dying well. We can't imagine benefits to knowing, planning, straight talk, frank decision-making, meaningful farewells -- even though some recent research suggests that terminally ill cancer patients may even live a little longer on hospice and off chemotherapy.

Hospice veterans talk about the dance of denial between the physician and patient and family, warily circling each other, waiting for the other's cue that it's now, at last, okay to bring up terminal illness and consider a hospice referral, and as a result perhaps never getting into step. I wrote a while back about the phenomenon of some patients and families just knowing when the time was right for hospice -- even though they many not have fully understood what hospice care is or what it offers. For my father, the right time for hospice was 36 hours before he died, and he was very familiar with the hospice concept -- he had my book on the subject.

We could ask what if people knew more about hospice, how it works, what it offers, and the benefits of earlier referral. Could a well-planned social marketing campaign be devised to overcome the misconceptions? Or would people still find ways to avoid the correct information? Is it hospice's job, ultimately, to take patients where they're at and when they come, willingly or kicking and screaming, early, late or not at all -- if that's the path their choices and unwillingness to choose take them?

social networking at NHPCO

I've been back about a week from the National Hospice and Palliative Care Organization's Management & Leadership Conference in DC. Although Twitter activity did not seem quite as robust at MLC as from the American Academy of Hospice and Palliative Medicine meeting in Austin, TX, the month before, there still were a number of people tweeting comments, summaries, opinions, heads-ups, reiterations and reinforcements of what was happening in the conference hotel -- all in the 140-character-or-less format that Twitter has made famous. Various themes were explored related to hospice rates, Medicare surveys, cap problems, quality measures and programs, and how social networking is impacting on the hospice professional community. Some, like AAHPM's Steve Smith, were tweeting from the conference rooms. Others were talking it up throughout the Exhibit Hall.

When I ran into old friends and colleagues and answered their question: What are you doing? naturally I mentioned my blog and Twitter. Some would roll their eyes while others asked how it really worked -- or what was the benefit. But everyone had heard of Twitter and everyone had an opinion, which might not have been true a couple of months before. For most I suggested that they could do a quick search at http://search.twitter.com and see how the entire Twitter dialogue from the NHPCO conference played out, posted in a long feed with the most recent tweet at the top. I'd make the same suggestion to anyone reading this column, but I just discovered that postings at search.twitter.com only stay up for a week. However, you can still see several dozen brief postings I filed onsite from NHPCO's cyberstation by following me on Twitter: @larryberesford.

A week ago, by searching #NHPCO, you could have seen hundreds of postings and gotten a sense of how useful this tool can be to professionals in the field who are interested in a lively, timely conversation about the most current issues of mutual concern. Like FDA decisions regarding opioid pain formulations. But not so much about meal choices or Austin Kutcher. Twitter remains a fad and a buzz and a target of derision by some in the mainstream media. But I recently attended the Association of Health Care Journalists' annual meeting and I can confirm that there are a lot of recently ex-newspaper health care writers who are also very interested.

social networkers help overturn FDA morphine ban

When the Food and Drug Administration on April 9 reversed its decision to ban certain unapproved formulations of concentrated liquid morphine and other opioid analgesics that hospice and palliative care clinicians have long ordered for their patients, it provided dramatic evidence of the emerging power of social networking within the online community of hospice and palliative care advocates to rapidly inform and mobilize their peers.

The American Academy of Hospice and Palliative Medicine (AAHPM) and the National Hospice and Palliative Care Organization (NHPCO) helped to organize the response to the FDA's March 31 memo giving manufacturers 60 days to stop producing 14 analgesic drug formulations that have been in use for so long that they never received formal FDA approvals. But the alarm was initially sounded via  blogs, Twitter, Facebook and other social networking tools of the new Millennium -- designed to spread the work quickly among multiple overlapping networks.

A fascinating, blow-by-blow account of how that alarm spread virally across those networks, written by Christian Sinclair, MD, can be found at Pallimed (www.pallimed.org/), a hospice and palliative medicine blog founded in 2005 by Drew Rosielle, MD. Rosielle is palliative medicine physician at the Medical College of Wisconsin, Sinclair is a hospice and palliative medicine physician in Kansas City, and both have been leaders in cultivating an online community interested both in hospice and palliative medicine and in how to communicate about it. Angela Morrow, a hospice and palliative care nurse who produces the Palliative Care Page at About.com, also helped to spread the word with her blog (http://tinyurl.com/cntbse), along with an accelerating traffic of brief updates by many others on Twitter.

Sinclair heard about the FDA's decision from a Facebook message from a former colleague the same day it was announced. Late the next day he posted a blog piece about the ban, which started generating a lot of responses by the following morning. Concerned responders were encouraged to contact AAHPM and NHPCO, which used their usual channels to develop responses to the FDA's decision, including an official letter from AAHPM sent on April 6. When the FDA decided to hold a Stakeholder Briefing on April 9, announcement of that audioconference was spread across the various social networking forums less than an hour before the event began. Still, 133 stakeholders were on the line to hear the FDA credit the hospice and palliative care community for "helping us understand" that some patients need the concentrated liquid morphine. The ban on the analgesic will be reversed until it can be replaced by an approved formulation or equivalent therapy. Some of the other unapproved analgesic formulations on the FDA list are still scheduled to go off the market in June, but negotiations are now going with the HPM professional organizations.

"From my point of view, this shows the power of social networks and how the information could come to me and then go out across multiple networks," Sinclair says. But it also underscores gaps in the communication network and the need for members of social networks to keep building bridges across platforms. Hospice and palliative care advocates, surprisingly, were overlooked by the FDA when it concluded that removal of the unapproved analgesics would not harm patients. "My point is this: Contribute to your network -- develop it, so that when you need it, it will work for you."

AAHPM's executive director, Steve Smith, finds this story an intriguing example of where organizations like his can go to enhance and expand their communication with members with a multi-pronged strategy that includes the new social networking tools. "It requires us to come up with some different pathways, but I see it as an opportunity." For a medical association, there are challenges to instant response, he says, and in this case AAHPM took a couple of days to communicate among its leadership and partnering organizations before jumping into the open forums. "We'll get more sophisticated in how we're able to engage, but we're definitely interested." (See also Associated Press story at http://tinyurl.com/cuyjsv.)

Does hospice have an "image problem"?

One of the speakers at the Compassion in Action hospice and palliative care conference in Santa Clara, CA, last week said that hospice has an "image problem." I knew what he meant: the fact that hospice care is intended for people who have been diagnosed with an incurable, fatal illness causes it to be viewed as a harbinger of doom -- like the Grim Reaper or the Flying Dutchman -- posing a classic marketing dilemma for those charged with representing a service that no one would want if they could possibly avoid it. Palliative care advocates have tried to work around this dilemma by offering their support simultaneous with active medical treatment and without asking for a terminal prognosis. Still, the taint of mortality is hard to overcome.

But I wondered if hospice actually has an image problem that is qualitatively different than providers of colonoscopies or prostatectomies or kidney dialysis or cardiac bypass surgery or an overnight stay in an intensive care unit. For the average consumer of health care services, these and countless other medical procedures are unattractive but necessary evils. If they weren't viewed as essential to the best medical management of the patient's condition, no one would agree to them. Hospice, too, might be seen as a necessary evil but when it is truly needed, people are grateful to have it available. There is a lack of consensus about when is the right time for hospice, and a lot of current public policy wrangling about patients who are enrolled in hospice care either too long or not long enough. But the families of hospice patients often tell me that when the time was right, they took advantage of the necessary evil of enrolling in hospice care, and they are glad that they did.

Hospice is typically called in when the situation looks dire, when conventional medical care is not getting the job done, when physicial and emotional problems are mounting. Some hospice patients are more or less open to talking about the fact that they are dying, but most recognize that they are in crisis and need help. And in most cases, hospice delivers as promised, and family survivors generally express satisfaction with the assistance that the hospice team provided to them during a most difficult situation.

What I think poses an image problem is the notion of the good death, the idea that the end of life could be a fulfilling phase of life and an opportunity for personal growth -- a time of reflection, of resolving emotional rifts and achieving satisfying farewells, of wrapping up one's life's work, of finding meaning in one's life and legacy, of realizing peace and grace and forgiveness and true comfort as death draws near. This idealized good death might involve writing or videotaping messages for future generations, finishing a major art project, talking to a long-estranged friend or family member, revisiting an old house or favorite natural vista, leaving financial affairs in good order, and just spending quality time with the important people in their lives.

This is what most people find hard to imagine, and because they can't imagine it, they don't ask for it. Hospice professionals know that such a good death happens because they have seen it in some of their patients. They hope that if pain and other symptoms of the terminal illness are relieved, if troubling life issues are addressed, if the crisis and chaos can be brought under control, then opportunities may emerge for patients to seek that kind of acceptance and closure and grace. But for many hospice patients, especially those who don't get referred until a week or so before their deaths, managing the worst aspects of the crisis of a terminal illness and tamping down the chaos to a dull roar is the best that can be hoped for. And if you look at the way hospice teams spend their time, it's generally focused on managing problems, treating pain, controlling symptoms -- not facilitating transcendent dying experiences.

Hospice advocates have not successfully communicated the opportunities for a good death to the American public. But they have been more successful at representing their crisis management and symptom relief skills. I think that's what people expect when they sign on for the necessary evil of receiving hospice care, and in cases where the hospice team is not able to manage the crisis, people will be disappointed and dissatisfied. Is this the right approach to hospice's image problem and the right use of hospice marketing efforts? Or should we be trying harder to communicate the opportunities for personal growth at the end of life and how people can realize the good death experience -- with hospice's help?

Hospice cap issue heats up blogosphere

The issue of Medicare's hospice cap or aggregate, average per-patient ceiling on Medicare payments to hospices is coming to a boil -- at least in that corner of the blog and Twitter world where hospice and palliative care posters congregate.

The cap is a provision of the 1982 law that created the Medicare hospice benefit, included for the purpose of ensuring that this new model of care would not prove more costly than the conventional care default for terminally ill patients. Since then, hospice has grown into a $10 billion industry that served 1.4 million dying Americans in 2007. The rapid growth in Medicare outlays for hospice has attracted the attention of the Medicare Payment Advisory Commission (MedPAC) and others in government concerned about extended lengths of stay, questionable admissions practices and the potential for excessive profits in hospice.

The hospice cap has grown with inflation from the original amount of $6,500 per patient to $22,380 currently, but is not adjusted for regional differences in operating costs. The average, aggregated cap amount is calculated for each hospice at the end of its fiscal year based on the total number of unduplicated Medicare beneficiaries served during the prior year. At one time, exceeding the hospice cap was considered a near impossibility. Today some hospice providers hold the opinion that in order to exceed the cap, one must be doing something fishy -- perhaps cherry-picking long-stay, uncomplex hospice patients from nursing homes and avoiding the more typical, challenging, short-stay patients with acute needs who are enrolled in hospice for seven days or less, and who would naturally counterbalance long-stay patients in a hospice's cap calculation. MedPAC has concluded that the cost of providing hospice care is highest in the days immediately after hospice enrollment and then before the patient's death, and has proposed that Congress reduce hospice's daily reimbursement rates between those high cost periods for long-stay patients using a payment model resembling a U-shaped curve. Hospices that wish to retain the cap also feel that this is not the right issue on which to expend the industry's goodwill.

Opponents of the hospice cap say that the retroactive calculation and subsequent demands to repay the government for care already given can be a nasty financial surprise, especially given the complications of tracking patients who come in and out of hospice or cross fiscal years. They point out that this provision of the hospice benefit designed to make sure hospice care remains cost-effective to the government is a blunt tool from another era very different than today, when a vastly larger proportion of hospice patients have diagnoses other than cancer and/or reside in nursing homes. According to Medicare fiscal intermediary data, in 2005, 44 out of 91 hospices in Alabama had cap overpayments totalling $48 million, 47 out of 85 hospices in Mississippi owed $46 million, and 47 out of 112 hospices in Oklahoma owed $28 million. Those are the hardest hit states.

The National Alliance for Hospice Access (NAHA), a coalition of 500 hospices formed to address the cap "crisis", with an Arlington, VA, office and website at http://tinyurl.dgkbqg, worked with the National Hospice and Palliative Care Organization (NHPCO) and other professional groups in the ad-hoc Medicare Hospice Benefit Working Group last winter to mobilize against Bush Administration cuts in hospice rates and MedPAC scrutiny. NAHA recently announced a Leadership Summit to be held April 7, 2009, in Tulsa, OK, to mobilize advocacy for a moratorium on enforcing the cap until Congress can craft a fiscally responsible long-term solution for hospices facing cap problems. Stuart Haugen, a Paris, France-based media commentator, has been using Twitter to help spread NAHA's views. 

See http://is.gd/nUrA for an alternate view and nuanced argument in favor of keeping the hospice cap, posted last April by a blogger who calls himself hospice_guy. I can't go to to next month's meeting in Tulsa, but I will be at NHPCO's conference in Washington, DC, April 22-25, and will try to sample what hospice executives are saying about the cap.

Hospice, once again, gets unjustly compared to euthanasia

Much ado on the airwaves today about yesterday's Associated Press article in which a lawyer compared hospice with assisting in suicide. (See it on the Washington Post: http://tinyurl.com/b4wmvu.) The National Hospice and Palliative Care Organization responded sharply this morning (see their statement at prnewswire: http://tinyurl.com/czjupq.)

Four members of a group called Final Exit Network, inspired by Derek Humphry's book Final Exit, were arrested last week as an "alleged assisted suicide ring," charged with assisting in the suicide of a 58-year-old Georgia man. Yesterday's article, "Assisted Suicide Presents Legal Quandary," written by the Associated Press's Greg Bluestein, who has been covering the case, quotes Michael Kaminkow, a lawyer representing two of the network members "Whatever happened here is no more than what happened in a hospice," Kaminow said. "A hospice is suicide. It's just a little slower."

NHPCO calls the lawyer misinformed, but I think it would be more accurate to call his statement outrageous, intentionally provocative and a natural tactic for someone representing defendants in a high-profile, sensationalized case. He would probably call it doing his job. But his unfortunate comparison is a sore point for the hospice community, which has confronted many right-to-life-oriented critics over the years.

In Oregon and, starting this month in Washington state, where assisted suicide is legal, hospices have walked a delicate tightrope, striving to meet terminally ill patients where they are at and supporting them with skilled and compassionate care to the very end of their lives while not directly participating in an act to end those lives. In other places, the medically inaccurate and misleading specter of the "morphine drip" is too often invoked in uninformed comments about appropriate end-of-life care. Although not all hospice professionals agree, the hospice community generally has taken the position of opposing the legalization of assisted suicide or euthanasia, viewing it as an ethical can of worms while offering hospice care as a better way to relieve the suffering that might drive some terminally ill patients to want to end their lives. Let's be clear: hospice doesn't practice assisted suicide, whether legalized or not.

But I find that this distinction can be hard for the general public to understand. The hospice movement was founded by people who appreciated that the mortality rate is 100 percent, that disease will sometimes (eventually, always) win, that increasingly desperate medical rescue measures may come at a cost that is too high, that miracle cures may not be realized -- and that sometimes we need to change our notion of what constitutes a miracle or healing in the life of someone with advanced terminal illness. Dame Cicely Saunders, founder of the modern hospice movement, was profoundly committed to the value of every human life until the moment of its death, offering pain relief, emotional and spiritual support and a safe haven for living fully until death's arrival. But in the larger culture, except for people who have had a personal experience with hospice care and were able to see it with their own eyes, these concepts can be hard to fathom. And hospice professionals, who have gotten more comfortable with the realities of living and dying, aren't always successful in communicating what they have learned to those who are not.

An attorney's outrageous publicity ploy on behalf of assisted suicide advocates accused of a crime may cause some individuals to think twice about seeking the support of hospice, and that would be a shame. But talking more broadly about the end of life, about disease processes and care options, about personal values in the face of the inevitable, about how to manage care and maximize quality with life-threatening illnesses, about choices we make as individuals and society and that are available from our evolving health care system -- that is what I hope a case like this might inspire.