Larry Beresford

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.

hospice in the stimulus package

Yesterday's (2/19) Denver Post and its Internet iterations carried a brief announcing that the just-signed federal stimulus package would benefit the Denver Hospice, the largest provider of end-of-life care in the Denver area, by $800,000 (see http://tinyurl.com/bbgw9t). For those who were wondering what hospice is doing in the stimulus package, I offer a brief explanation. Hospice care is covered by Medicare, and the rates Medicare pays are subject to an annual cost-of-living increase and are regionally adjusted based on local labor and other cost variations. Complex negotiations a decade ago over how to fairly apportion the wage index between rural and urban providers without hurting either too much resulted in the Budget Neutrality Adustment Factor (BNAF) to the hospice wage index.

Last year the Bush administration decided to eliminate the BNAF in phases over three years, starting Oct. 1, 2009, as a cost-cutting measure. Over the course of five years, it was predicted that eliminating the BNAF would reduce overall hospice rates by about 4.5 percent, which amounts over five years to a $2.2 billion reduction in Medicare spending on the $10 billion industry that hospice has grown into. Hospice representatives challenged the administration's move to eliminate the BNAF in Congress and the courts, but the first phase (25 percent of the total elimination of the BNAF) went into effect Oct. 1.

With its history of allies and legislative support in Congress, hospice got a provision included in the stimulus bill that would delay the BNAF's elimination for one year, retroactive to Oct. 1. That restored hospice rates to the level they would have been at if the BNAF never been eliminated, which industry leaders estimate amounts to about $135 million over the course of the year. Some of that is for care already provided and hospices are in line to collect some additional payments for that care. The Denver Hospice believes it is in line for an additional $800,000, which is its proportional share of the stimulus support for the hospice industry as a whole.

What happens in the next fiscal year, starting Oct. 1, 2009, is still to be determined. As it now stands, the cuts ordered last year by the Bush Administration would be implemented but a year later than first ordered, and perhaps with the phases readjusted. But perhaps all of that will be reconsidered by the new administration. What remains unanswered is whether hospices are overpaid or underpaid. The recent rapid growth of the for-profit sector of the hospice industry suggests one answer, but many agencies providing hospice care in patients' homes across vast rural stretches, or responding to the needs of patients for expensive treatments to relieve their pain and other symptoms of terminal illness, all while shelling out increased travel costs for gas and increased labor costs in an era of nursing shortages, draw a different conclusion. One thing we know is that America's hospices, caring for 1.4 million terminally ill patients in 2007, have become an ever more mainstream participant in the health care system and a significant part of the Medicare budget -- and thus a target for more government scrutiny.

MedPAC looks at the hospice benefit

In January, the Medicare Payment Advisory Commission (MedPAC) took a close look at hospice care and its coverage under Medicare. MedPAC is the agency that advises Congress on the Medicare program and recommends possible legislative tinkering with its various provisions. A transcript of a lengthy discussion held January 9 in Washington, DC, among MedPAC staff and Commissioners can be found online at www.medpac.gov/transcripts/0108-0109MedPAC.final.pdf, starting on page 259 of a 398-page document, labeled as page 3 from the second day of MedPAC's quarterly meeting.

It is interesting in a deeply wonky, public policy-focused way, particularly for anyone curious to triangulate between hospice's rather vague image with the public, the version of hospice projected by its larger and more marketing-oriented practitioners, its evolving and somewhat diminished reputation among government officials, and the variable reality of hospice care on the ground. The MedPAC report talks about structural incentives in the Medicare system favoring long stays in hospice, the correlation between length of stay and profitability, the need for closer attention to the timing of hospice admissions, marginal costs of care, the U-shaped curve of hospice costs based on length of stay, and how to reweight Medicare payments to hospice in order to achieve budget neutrality and encourage more appropriately timed admissions.

On second thought, maybe you don't want to look at this 85-page transcript, especially if what you are seeking is information about where you can find a competent and nurturing guide to deal with the fact that your own mother with cancer or Alzheimer's doesn't seem to be responding anymore to her medical treatments. One of the striking phrases from MedPAC's report is "very bad actors." For those of us who believe that hospice can be an enormous and at times even miraculous support for people at a most vulnerable time of life, it's hard to think of very bad actors inserting themselves into that intimate encounter.

Hospice professionals generally are aware of the bad actors among them but don't talk about it except among themselves, behind closed doors, believing that widespread public exposure of the problem would hurt the reputation of all hospices. MedPAC does not say who those bad actors are, how to identify them, or what to do about them once we find them. But MedPAC also thinks Medicare may be paying hospices too much and that some hospices may be inappropriately admitting some patients too soon for a benefit expressly designed for terminally ill patients with a prognosis of six months or less to live, perhaps in order to run up profits in a program that now costs Medicare somewhere around $10 billion a year.

I appreciate that many hospices struggle to keep their doors open on what Medicare now pays, some because they cover geographically dispersed areas with a top-notch workforce and take all comers with a commitment to cheerfully supply whatever is needed to maximize comfort, quality of life, relief from pain and overall peace of mind, thereby helping to facilitate what could be a truly meaningful end-of-life experience for patients and families.

But we also know that the for-profit sector of the hospice provider industry has been growing most rapidly, that some of those providers have begun bumping up against the aggregate, average per-patient "cap" on hospice reimbursement from Medicare, a problem that was once considered unthinkable, and that some are actively lobbying for legislative relief from the cap's inhibitory effects on their profit margins.

Of course that's how things are done inside the Beltway, regardless of the actor. Again, if you're trying to find the right path for your own mother, whose cancer doesn't seem to be responding anymore to her medical treatments, their messages are not meant for you. Perhaps hospice lobbying, just like the making of legislation overall or of sausage, is something best not observed too closely if you wish to retain respect for the final product -- which in this case remains the expert and compassionate care of patients with terminal illnesses and their families.

When is the right time for hospice?

My uncle died last month at the age of 94, not long after celebrating his 60th wedding anniversary. He died in a hospital bed set up in the living room of the apartment in an assisted living facility where he and my aunt had moved a couple of years before, and where they had entertained a succession of visitors, mainly their three children, numerous grandchildren and, most recently, a great granddaughter.

My uncle died peacefully following a slow decline, attended by his wife and a hospice nurse. The nurse had noticed his irregular breathing during a scheduled home visit and sat down to time the breaths, but the next one never came. My uncle’s full life and love of family and music were celebrated in a service at the tall-spired Presbyterian church where he had been active for nearly six decades. The pipe organist played one of his favorite pieces, Bach’s Toccata and Fugue in D Minor, thunderously, with all of the stops pulled out.

There’s nothing unusual in my uncle’s story. This is what we generally think of as a good life -- and a good death, quietly slipping away without pain in a peaceful setting, his life partner at his side, not overburdened with intrusive medical technology. That’s what people tell pollsters they would want at the end of life, but it can be hard to achieve these days without the help of a committed and competent hospice team.

When I saw my cousin, who knows that I write about hospice care, she emphasized that the hospice had given her father good care. She characterized the encounter as a positive one. “They had suggested hospice earlier, but we weren’t ready. When the right time came, we just knew.” That is something else I have heard before: people aren’t ready when hospice is first suggested. At some point, the right time comes and everyone just knows it. But what is that mysterious point, and how do people recognize it?

Those who work in the field say that hospice is often not well understood by consumers—at least not with the appreciation of nuances and opportunities that we might wish. We know that people don’t like talking about end-of-life care. One survey found that Americans would rather discuss sex and drugs with their teenaged children than end-of-life care with their aging parents. We also know that medical prognostication of a terminal illness of six months or less to live is notoriously unreliable, even for the most skilled practitioner.

Hospices complain that too many referrals come in the final days or even hours of life, often under extremes of symptomatic crisis. Yet average lengths of stay in hospice are creeping up, and government watchdogs are concerned that some patients are enrolled for too long -- longer than the intent of the 1982 statute creating the Medicare hospice benefit. (That’s a subject for another posting.)

Many families have expressed regrets that they weren’t referred to hospice sooner, so that they might have taken more advantage of its support and expertise. It is probably true that some of those families would have resisted an earlier referral. We also know that patients sometimes miss out on very real opportunities for meaningful farewells, wrapping up their life’s business in satisfying ways and leaving legacies for those left behind -- in other words, the optimal hospice-facilitated experience -- because they were too busy grasping for low-yield, intensive medical interventions aimed at cure.

When I add up these different perspectives, it becomes clear that the path into hospice is not an easy one. The markers for optimal transition are not widely agreed upon between patients, families, physicians and hospice professionals. Despite this lack of clarity, some 1.4 million Americans crossed the threshold into hospice care in 2007, each with their own sense of when was the right time, with their own unique version of the hospice experience and their own highly personal encounter with dying. Some resisted the referral or came with reluctance. It is hard to agree on what the proper time for a hospice referral ought to be. But in many cases, for reasons I can’t explain, when the time was right, they just knew.

The Spiritual Essence of Hospice and Palliative Care

In April I joined some 2000 hospice and palliative care professionals in San Diego for the National Hospice and Palliative Care Organization's annual Clinical Team Conference. Much of the meeting was devoted to exploring quality improvement and measurement in end-of-life care, expanded roles for physicians, and the continued emergence of new palliative care models-including those being established by certified hospice programs, large and small. But I was also struck by an undercurrent at that meeting and I am curious to find out what those who work in the field might think about it.

First, let me try to frame a context. More than a million patients received hospice care in the United States last year, and the numbers continue to grow. Despite ongoing concerns about short-stay patients who only reach hospice in the final days of their lives, overall average lengths of hospice stay are creeping back up. And the potential to generate a profit from hospice care inspires new entrepreneurs to enter the field.

At the same time, palliative care consultation services are springing up in many hospitals, driven in part by a professional critique of the barriers to hospice access and the reluctance of seriously ill patients to acknowledge their terminal prognosis or accept a hospice referral. Growing recognition from key national bodies regulating medical practice suggests that palliative care will also continue to grow.

But in the midst of those upward growth curves, has something essential at the heart of hospice and palliative care gotten lost or diluted? What that missing something might be was captured for me in a remark by Tom Beason, spiritual care professional with Hernando Pasco Hospice in Florida, during an ethics conclave sponsored by NHPCO. "Dying ultimately is a spiritual matter," Beason said. Recognizing that truism, he added, hospice teams obviously would want to do everything they could to help dying patients get to a place where they and their families were okay with their looming mortality, seeing death as a natural part of life, not some kind of mistake.

That may seem obvious, and in accord with hospice's press clips and its view of dying as a transformative process and an opportunity for personal growth and development. But is it really so obvious that hospices (or palliative care services) routinely do everything in their power to make their patients okay with dying? How would we know if that were true? Could it be measured and documented by any of our existing quality tools?

This notion of helping terminally ill patients learn to be okay with their dying is what inspired many hospice and palliative care professionals and volunteers to enter the field. I think it also reflects the public's general understanding about hospice. But I also think Beason was talking about something more nuanced and less prescriptive than Elisabeth Kubler-Ross's fifth stage of acceptance, and deeper than the "self-determined life closure" targeted by some hospice quality measures.

If my hypothesis is correct, that this essential spiritual aspect of hospice is being diluted, what might be threatening hospice's ability to normalize death, facilitate the search for meaning, and help dying patients get their affairs in order in the broadest and most spiritual sense? I wonder if the sheer growth of hospice caseloads and staffs has the potential to dilute this spiritual commitment. Could current efforts to make hospice and palliative care more culturally inclusive, important as they are, conflict with preserving the spiritual essence that hospice founders envisioned?

We have heard from our social marketing consultants that death is a toxic subject for many seriously ill patients, challenging us to find new ways to bring them within our orbits. Do these cultural trends, coupled with short lengths of stay, leave hospice professionals less likely to offer their patients spiritually meaningful closure at the end of life?

Preparing for the Big Transition

I called Tom Beason to ask him if we had our fingers on the same pulse in the hospice community. Hospice and palliative professionals claim great skill at managing pain and symptoms, he replied. "But when I go to hospice team meetings, it seems like most of what they're talking about is the medical stuff. If that's so easy to do, why do we keep fine-tuning the medical treatments while our chaplains and social workers sit there not saying much?"

Beason, who provides education and supervision for spiritual and bereavement professionals at his large hospice, explained, "I tell my chaplains to speak up at team meetings and get involved in the discussion. Ultimately what we're trying to do in hospice is prepare people for this huge transition in their lives. But I'm afraid that a lot of times, because we get involved so late, we don't actually get to the psycho-social and spiritual aspects of that transition until the patient is no longer able to meaningfully participate."

Beason said he is also curious about currents among hospice professionals, reflected in the avid interest shown by many at NHPCO's San Diego conference for presentations by Frank Ostaseski, founder of the Zen Hospice Project in San Francisco and the Alaya Institute for spiritual training. Ostaseski, too, reminds us that dying, at its core, is a spiritual, not a medical event? Beason believes that hospice professionals are more than ever drawn to Ostaseski's message and interested in finding ways to keep spiritual care at the table, even while we continue to hear the message that consumers find hospice toxic.

"It's a debatable point whether the hospice movement has made any impact at all on the fear of death in American culture. And yet there is in this country an upsurge in spirituality," Beason noted. "It seems to me that many people resist these spiritual conversations-not about whether they are saved, but what kind of shape are they in at the end of their lives? What about all of the things they've done in their lives that they regret, or relationships that are in disrepair? Most people don't have a language or anything in their lives to prepare them for this conversation, and I don't see religious institutions contributing to it either."

Based on his own work in hospice, Beason says these spiritual questions are eating many seriously ill patients alive. "Don't we owe it to our patients to put them in the best possible position, before they die, to have dealt with everything that matters in their lives as whole human beings, regardless of what we may think comes next? I recognize that this is very critical and subtle work. You can't push people into it. Some won't want it. But don't we in hospice have an obligation to offer it?"

What am I really asking in amplifying Beason's remarks? I guess I wonder if the archetypal view of hospice as helping terminally ill patients get okay with death has actually survived hospice's growth into a six billion dollar industry. Is that experience still routinely offered to patients who are open to it? Did it make it through the translation of the hospice concept into hospital-based palliative care? Or does the medicalization of end-of-life care threaten this softer side of the work? How do people who work in the field today feel about their ability to routinely touch that part of their patients' lives? What would help to preserve this aspect of hospice care and how does it relate to efforts to quantify the quality of hospice and palliative care?

I wonder if these questions can be openly discussed at this stage in our young movement's evolution. Or is it a kind of cultural imperialism to even bring them up? I know I need to refine my questions, but I would welcome your feedback on this initial foray of the spiritual heart of hospice and palliative care. Send your comments to me at: larryberesford@hotmail.com.