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: email@example.com.