Larry Beresford

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.

Should Hospice Executives Take Sabbaticals?

While researching a report on leadership succession planning for hospices (which members of the National Hospice and Palliative Care Organization can read in NHPCO’s NewsLine newsletter, March 2006, starting on page 3), I was introduced to the concept of a hospice sabbatical – taking a significant break from one’s job routines, as educators sometimes do.

The issue is how long-time hospice executives (or other professionals) can stay fresh, committed and creative in their jobs. How do they retain a personal connection with the underlying values and meaning of hospice care while staying on top of productivity, compliance, budgeting and other essential managerial tasks of running today’s complex hospice programs in an increasingly challenging and competitive environment? How do they avoid isolation from the larger health care system, from the intimate concerns of patients and families, and from perceptions of hospice care held by others?

Ann Luke, who retired after a varied career in non-profit, health-system and corporate hospice management in Colorado, related to me a story about Dr. Sylvia Lack, the first medical director of the first U.S. hospice. Lack believed that hospice medical directors should take a break from their hospice work and step back into traditional medical practice every six years or so. “Otherwise, you can limit your access to what’s happening in the real world.”

Luke wonders whether it could be a healthy practice for hospice administrators, as well, to take a sabbatical from their jobs. An executive who is professionally trained as a nurse or social worker could step back into that professional role as a kind of sabbatical. Given the pace of change in medicine, it could be an invaluable learning experience as well as a perspective-enhancing break from a current job rut.

Just as in academics, taking some months off from administrative responsibilities to pursue new skills, new interests and new roles could go a long way toward revitalizing the executive’s vision and leadership. Participating in an international delegation, such as those sponsored by the Foundation for Hospices in Sub-Saharan Africa, could provide indelible new viewpoints. What about a job exchange with someone in a very different setting – even another country?

The Shorter Version

I realize that few hospice executives are going to take months off from their jobs for a sabbatical, because of the disruptions and logistical challenges of installing an interim replacement. But there are more feasible options that don’t involve such a long time commitment while still exposing them to the real-life experiences of seriously ill patients and families, either before or after their referral to hospice.

Experts interviewed for my NewsLine article emphasized the value of arranging regular, face-to-face contact with patients and families. An executive could make joint home visits with the hospice’s professional staff in a supervisory, educational or just observational capacity. Executives who retain qualifications as health professionals could take on an occasional patient to manage. Others could visit patients as lay volunteers. I once heard of a hospital president who cooked pancakes for patients on the hospice unit. Whatever else fills the executive’s 50-to-60-hour weeks would need to be juggled to free up a couple of hours on the front lines of hospice care, in order to rediscover in concrete ways how the agency manufactures this unique widget called hospice care.

Other suggestions include taking a shift answering calls in the intake department, listening to the concerns of newly referred patients and those who are responsible for their care. As part of a quality initiative, be the one to call survivors three or six months after the patient’s death to hear their evaluation of the care they received. Ann Luke suggests contacting the people who were referred but then declined hospice care to find out what they perceived about it that made them turn it down. Even more instructive might be to take a few shifts as a home health aide or homemaker, experiencing hospice care at its most concrete level. While you’re at it, offer your clerical and billing staff the chance to make an occasional home visit – even just delivering the next prescription refill or carton of chux. Any of those measures could provide an opportunity for renewal and for sharpening rusty listening and communication skills.

Writers Also Need Human Contact

This question is relevant to my writing about end-of-life care. Although I was originally drawn to the human encounter with mortality and the ultimate questions that hospice care at its very best aims to facilitate, that’s not what I spend most of my time writing about. Instead, I regularly address hospice coverage, eligibility, reimbursement, regulations, staffing, organizational issues and the like. All important to the consistent provision of high-quality hospice care, but at an arm’s length from the deeper spiritual and existential questions. Only occasionally do I get to meet patients or bereaved survivors, which is always a highlight of my work.

I was drawn to hospice volunteering before I started writing about the field. Through much of the 1980s and 1990s I was a hospice patient care volunteer in San Francisco, visiting patients’ homes and doing shifts in residential settings. With no professional health care skills to bring to that role, I had to fall back on intangibles such as listening, presence and patience. But I haven’t done any hospice volunteering since 1999.

Just as I encourage hospice or palliative care administrators to incorporate face-to-face encounters with patients into their job routines, I recognize the same need in my own work, writing about hospice and palliative care. This week I was interviewed by a hospice volunteer coordinator in my community and I signed up to take a volunteer training course starting in May. We’ll see what comes of that.

Send your tales of hospice sabbaticals or other front-lines experiences intended to keep your job fresh to me at: larryberesford@hotmail.com.

Building a Meaningful Continuum of Care

Hospice and palliative care, they go hand in hand, to paraphrase swing master Louis Jordan. These two labels for models of care that target the relief of suffering and the human needs of patients with serious, life-threatening or terminal illnesses increasingly get uttered in the same mouthful. Just look at the names of the National Hospice and Palliative Care Organization, state providers' associations and numerous local retailers of end-of-life care.

But what does that mouthful really mean? Is this essentially one broad type of health care that spans settings, reimbursement streams and stages of illness? Are hospice and palliative care alternatives to each other, competitors or closely linked neighbors on the continuum of care? If partners on the care continuum, are they cooperating in a way that maximizes access and the reach of each partner?

Some established hospice programs have viewed palliative care development with alarm and suspicion, although this perspective is becoming less common. Palliative care advocates have highlighted the problems of hospice-short lengths of stay, physicians' reluctance to give their patients informed referrals to hospice, patients' reluctance to accept such a referral, regulatory and eligibility barriers, the "terrible choice" that patients sometimes must make between hospice care and cure-oriented treatment. At the same time, a palliative care service isn't going to meet the full range of its patients' needs if it does not have ready access to a hospice program when that level of care becomes timely.

Note that most of the criticisms of hospice have to do with barriers and with consumers not being able to take advantage of this "gold standard" of end-of-life care, rather than specific complaints about the quality or value of the service for those who obtain it. As someone who has written most often about hospice but also about its cousin, palliative care, I am an unashamed advocate for the hospice concept and its ability to work miracles in the lives of dying patients and their loved ones.

Yet I understand there are many other patients who struggle with the demands of serious illness, suffering imposed by untreated symptoms or harsh treatments, fears about their changing health status and confusion about their medical treatment. Many of those people could benefit from hospice's specialized skills but are unable to enroll in hospice care because of emotional barriers, lack of knowledge, lack of referral, lack of eligibility and hurdles imposed by hospices themselves.

This could be a partnership made in heaven between hospice, the most intensive form of palliative care, and the emerging new models of palliative care that are extending this kind of care to more patients much sooner. It could be a seamless continuum of care, but again, what does that mean?

Continuums of Mistrust

At a recent hospice conference, I met a quality improvement nurse from a health system-based hospice program who had been given the assignment of liaison to a palliative care service recently launched within an affiliated hospital. She had learned the buzzwords "seamless continuum of care" and understood that it was her responsibility to try to build one. But there was a lot of suspicion between the two programs, not much mutual understanding and little meaningful collaboration at the personal level.

"It sounds like where you need to start is by building close personal relationships between hospice and palliative care staff," I said to her. "How can you act more like a single team? Have you thought of planning a joint picnic or other team-building activity?" She suddenly stiffened, as if in horror.

Hospice professionals, I knew, were well-versed in the techniques of team building: support groups, pot lucks, boat rides, bowling nights. But for this hospice nurse, pursuing such trust-building activities with palliative care, well, that was beyond the pale.

Don't misunderstand my sympathies. I am sure the palliative care service was equality reluctant to initiate friendly continuum-building, just as suspicious of the intentions of those hospice people who work out there in the community. Did they understand the regulations under which hospice must operate and the ways that skilled hospice professionals have learned to successfully navigate those rules? Had they bothered to learn the first names of hospice staff with whom they should have been interacting-and their children's names?

I would suggest that building the continuum of end-of-life care is an act of team-building and relationship-building that involves both hospice and palliative care teams. They should see each other as a single team, regardless of their respective corporate or ownership auspices, fully cognizant of the different coverage rules each operates under, but with patients' and families' actual needs driving the joint team's efforts.

Opportunities for Partnering

I would add a few other observations to this realm of hospital-hospice interaction and continuum building. It seems unlikely that the development of a palliative care service in the hospital would have negative effects on local hospices' caseloads or lengths of stay. Anecdotal evidence suggests that the opposite outcome is more likely. Hospitals in present-day America are not going to hold onto terminally ill patients who could be discharged, because their reimbursement pressures would not permit it.

The presence of a palliative care service doesn't impede hospice referrals-even though physicians and patients may still resist them. More often, it will encourage patients and families to consider and discuss their goals of care, how to plan for undesired contingencies, and their hopes as the patient's physical condition deteriorates.

At the same time, if a palliative care service is serious about meeting the care needs of seriously ill patients, many of those patients eventually will need hospice care. Whatever can be done to build relationships and ease referral barriers will be a win-win situation for the palliative care service, the hospice and the patient. All of which will make a hospice referral more likely when that becomes appropriate.

Any meaningful relationship is two-sided and mutual. For hospices and palliative care services to start to build tighter bonds as members of the same seamless care continuum, either party can originate a friendly contact, but both sides must be willing to get together. The weather might not be cooperative this week, but come spring, I highly recommend a joint picnic. I'd be happy to offer my potato salad recipe.

Contact end-of-life writer Larry Beresford at: larryberesford@hotmail.com

Introducing another blog on end-of-life care

It would seem that there's no getting around the need for me to blog. The determined and persuasive techno-architect of Growth House, Inc., Les Morgan, has asked me to do it. My role as a health care journalist trying to comprehensively cover the field of end-of-life care demands it. There are nuances and conundrums of this work that need further exploration, and I hope this space can turn into a conversation about the issues.

For most of the past two decades I have worked as a freelance writer haunting the narrow realms of hospice, palliative care and end-of-life care, tailoring my newsletters, columns, trade magazine articles, reports and one book (The Hospice Handbook, Little, Brown & Co.) to specific audiences and clients. But some of the stories and themes I encountered along the way fell through the cracks between those markets, not quite fitting into any of their formats. Many of the questions that most interest me haven't had a proper outlet for exploration except, sometimes, over a glass of wine at a hospice conference. Those are the stories I want to tell in this space.

Although the mortality rate is still 100 percent, end-of-life care is a subject that people don't want to even think about until they absolutely have to. Yet most Americans eventually will confront the challenges of end-of-life care as chronic illnesses mount. Why the public is so resistant to the realities of end-of-life care, and how to provide consumers with helpful and accurate messages about those realities that could contribute to the quality of their lives, are questions I have wrestled with throughout my career.

Why are Americans so averse to thinking about, talking about or documenting their values and preferences related to the all-too-common outcome of incapacity and terminal illness? Even when that avoidance means their actual preferences are less likely to be respected? Research shows that the typical American is more resistant to talking about end-of-life care options with elderly parents than about sex and drugs with teenaged children.

Why is planning for an elder's inexorably changing health status and long-term care needs so fraught with heartbreak and undesired outcomes? Why is hospice, highly valued in the abstract, such a conversation stopper for so many people? How, after so many feature articles, is it still possible to misconstrue hospice as that place where you go to die?

Yet if hospice is too intimidating, too real, too frank, too closely associated with death for most Americans to consider, as some experts claim, how did over a million of them enroll in hospice care last year and receive that care for an average of nearly two months? These are the kinds of questions I would like to explore in this space, sharing stories from my other writing projects but also finding personal slants that don't fit elsewhere.

What I Write About

Currently, I am a half-time consulting writer and editor for the National Hospice and Palliative Care Organization (www.nhpco.org), which in no way is responsible for the content of my blog opinions (generic legal disclaimer here). Yet it is largely thanks to NHPCO that I get to regularly visit hospices, learn about their special programs and services, meet patients and team members and hear about their challenges and successes.

In the last couple of years while working on these projects for NHPCO I have learned about pediatric palliative care, the challenges faced by rural care providers, inpatient hospice units and their coverage limitations under Medicare, the special needs of armed forces veterans nearing the end of life, unique aspects of care for patients with ALS (amyotrophic lateral sclerosis) or end-stage renal disease, and the challenges of making hospice more diverse and inclusive.

I am also a consultant to the Center to Advance Palliative Care (www.capc.org), interviewing and writing about hospital-based palliative care services. Other recent clients have included the Robert Wood Johnson Foundation, the Project on Death in America, Promoting Excellence in End-of-Life Care, the National Coalition on Health Care, VITAS Healthcare Corporation and the Hospice Foundation of America.

Most of my work has been aimed at the professionals who work in this field, helping them understand trends affecting their work and reporting on creative responses to those trends-so that they can do their jobs better. This blog, too, is targeted more at the people who work in the field. However, it won't address fine points of Medicare coverage or of the clinical management of terminal illness. Instead, I will look at why providing end-of-life care, reaching the people who need help and satisfying their deepest needs for comfort, dignity and meaning, is so difficult.

Some of the rules of health care reimbursement and regulation and the operating procedures of health providers must seem incredibly strange and hard for consumers to fathom. I believe I am in a unique position to wade into that ambiguity and try to shine a light on it. I hope to explore some of the contingent mysteries accompanying life's greatest mystery, without forgetting that the human encounter with death is profound, life-transforming and the best opportunity to explore questions of ultimate meaning. I aim to write something that a lay reader interested in these questions would also find valuable.

Meanwhile, I continue to seek ways to reach a general audience about the issues I cover every day for the professional audience. My latest attempt to explain the essence of hospice care in print to a general readership can be found on page 40 of the February 2006 issue of VFW Magazine.

Contact end-of-life writer Larry Beresford at: larryberesford@hotmail.com.