Hospice Trends: Simultaneous care’ may be in hospice’s future
Don’t force patients to make the terrible choice
By Larry Beresford
A report issued late last year by the Robert Wood Johnson Foundation’s Promoting Excellence national program office in Missoula, MT, highlights some provocative new directions for end-of-life care policy and financing. Drawn from the experience of palliative care demonstration projects funded by Promoting Excellence between 1998 and 2001, the report suggests that improving quality and access to appropriate end-of-life care can also generate cost efficiencies for the health care system. One of its most provocative themes is a concept called simultaneous care.
This concept has huge implications for the future of hospice. Simultaneous care means offering seriously ill patients the compassionate support of hospice or palliative care while they are still pursuing "aggressive" curative, disease-modifying, or even experimental treatments. The simultaneous approach can address patients’ needs for support, symptom management, and whole-person care while acquainting them with the palliative care team and its philosophy. That relationship has the potential for easing the patient’s eventual transition from active treatment to a strictly comfort-oriented approach such as hospice when that becomes appropriate.
The concept of simultaneous care increasingly turns up in the palliative medicine literature and in public statements by end-of-life leaders such as Promoting Excellence director Ira Byock, MD; Diane Meier, MD, of the Center to Advance Palliative Care (CAPC) in New York City; and even Donald Schumacher, the new president of the National Hospice and Palliative Care Organization (NHPCO) in Alexandria, VA. This concept holds the potential to dramatically alter some of hospice professionals’ most basic and cherished assumptions about the demarcation between cure and care.
But it does not alter what is perhaps the cornerstone of the hospice movement: restoring patient autonomy — meeting the seriously ill patient where he or she is and addressing care needs as defined by the patient.
Medicare’s current hospice regulatory structure poses barriers to the provision of simultaneous care by hospices, because only clinically appropriate, terminally ill patients should be enrolled on the benefit. However, some hospice agencies have gotten around those barriers by developing corporately segregated palliative care programs.
An even greater barrier is the ingrained hospice belief that seriously ill patients must "give up" curative treatments before they can qualify for the psychosocial/spiritual support and relief of suffering that are hospice’s stock in trade.
Hospices prevented from sharing expertise
This divide is known as the "terrible choice" and is one of the primary reasons why stays in hospice care have gotten so short in recent years — as well as why new models of non-hospice palliative care are springing up in hospitals from coast to coast. The terrible choice prevents many seriously ill patients with significant palliative care needs from taking advantage of hospice because they are not willing to give up the pursuit of a cure.
But that also prevents hospices from sharing their expertise in symptom management, whole-person care, anticipatory grief support, life-transition management, and counseling with patients who truly need these services from the moment of diagnosis of a life-limiting illness.
In the view of simultaneous care advocates, it is neither realistic nor fair to expect patients and families confronting a life-limiting illness to do all of the hard work of giving up aggressive treatments before they can take advantage of the support of hospice — not when the best resources for helping them work through those issues are on the hospice team itself.
The Promoting Excellence report, Financial Implications of Promoting Excellence in End-of-Life Care (available at www.promotingexcellence.org) profiles seven demonstration project grantees that attempted to provide simultaneous aggressive and palliative care for specific patient populations including cancer patients, children, people with AIDS, veterans, and enrollees on a Blue Cross case management program. (I was primary author and site visit researcher for this report, although it mainly reflects the vision of Byock and his staff at Promoting Excellence.)
Saving money by averting crises
While cost data from these innovative, leanly funded projects are sketchy, they nevertheless are suggestive in terms of the potential for palliative care to generate cost savings by preventing or managing medical crises and thereby forestalling emergency room visits and hospitalizations.
"They achieved these results by coordinating care and facilitating communication between patients, families, and providers; by enhancing patients’ autonomy and sense of personal control; and by assisting patients with advanced care planning and treatment decision-making that reflected their personal values and preferences," the report states.
In other words, the simultaneous care demonstrations offered the best of hospice care to patients who had longer to live than the typical hospice patient and weren’t ready to give up active treatment. "Comprehensive hospice care at its best is the gold standard for end-of-life care in America and it also provided a benchmark for the Promoting Excellence projects," the report notes.
In several instances, hospice agencies were actively involved as partners in the Promoting Excellence projects’ provision of simultaneous care. However, their experience also demonstrated that under the current reimbursement system, financing hospice care at the same time as active treatment is difficult. Ultimately, changes in the funding of hospice care may be needed to institutionalize the simultaneous approach.
The best way for hospice professionals to begin to understand what simultaneous care means for the practice of hospice is to go back to the profession’s historical focus on the patient and on "what is in the best interest of the patient — as defined by the patient," Meier observes. "We may disagree with some of the decisions these patients make, but whose life is it? Very few patients want to give up on active treatment. Both doctors and patients, understandably, want appropriate life-prolongation. We shoot ourselves in the foot by insisting on the forced choice," she says.
It is also important to recognize that semantics can cloud understanding the implications of simultaneous care. Hospice care is palliative care, the most intensive and specialized form of palliative care, although other palliative care models are now attempting, with varying degrees of success, to move "upstream" and offer similar kinds of support for seriously ill patients from the point of diagnosis.
There is also the distinction between hospice agencies and their primary income stream, which is the Medicare hospice benefit. Increasingly, hospices themselves are providing palliative radiation, chemotherapy, and other intensive treatments when those are desired by the hospice patient or the treating physician and when such treatments have the potential to enhance comfort. At times, calling the treatment palliative may just be a euphemism or a form of psychological palliation for patients who aren’t quite ready to let go.
Palliative care can support search for a cure
Simultaneous care, on the other hand, explicitly acknowledges that the seriously ill patient is still fighting for a cure. For such patients, the support of palliative care can help them explore their treatment goals and preferences in a non-judgmental atmosphere while having their symptoms and side effects managed by experts — without requiring them to give up treatment before they can be considered for such support. In the case of treatments that are no longer offering much benefit, palliative counseling might make it easier for the patient to reach the inevitable conclusion sooner to let go and focus instead on comfort and goodbyes.
For one of the Promoting Excellence demonstration projects based at the Ireland Cancer Center in Cleveland, the results of simultaneous care were dramatic. Project Safe Conduct brought a team from Hospice of the Western Reserve into Ireland Cancer Center to provide integrated, concurrent support to advanced lung cancer patients who were still receiving treatments at the center. The proportion of patients who ended up on the hospice benefit increased under this project from 13% to 80%, while their median length of hospice stay increased from just three to 30 days, compared with the center’s lung cancer patients prior to Project Safe Conduct.
Even the NHPCO, long-standing defender of the Medicare Hospice Benefit, is exploring how simultaneous care models might be integrated into the field. Hospice has clearly influenced the overall culture of dying in America during its three-decade history, Schumacher observes. "But you can’t legislate psychology, and the human tendency is to hold onto chemotherapy until you’re truly ready to let go," with the result that most patients choose hospice too late.
Demonstrations and other opportunities
"If we can offer these patients the opportunity to have a reasonable and purposeful discussion of what the therapies mean to them, I believe that patients eventually will choose hospice sooner in the disease progression," giving up aggressive treatments that aren’t helping them.
In the current regulatory environment, Schumacher says, "I think you need to be very careful only to admit patients onto the hospice benefit who meet the criteria [for a terminal prognosis]. I would agree that a patient seeking aggressive, curative therapy is not hospice-appropriate at this time."
However, NHPCO has developed a public policy proposal that would permit Medicare-certified hospices to provide and be reimbursed for interdisciplinary palliative care consultations for patients who are not hospice-appropriate. NHPCO’s Public Policy Steering Committee also is exploring a proposal for regional demonstration projects that could test simultaneous care models. "What those demonstrations would look like is still to be determined, but we believe they have the potential to save money and bring patients into hospice sooner," Schumacher says.
Other ways for hospices to begin to explore the potential and the implications of simultaneous care include collaborating with hospitals in the development of hospital-based palliative care programs, as described in the joint NHPCO-CAPC monograph, "Hospital-Hospice Partnerships in Palliative Care" (accessible at www.capc.org/content/165/). There are also opportunities to expand the role of the hospice medical director in physician relations and to establish more effective professional relationships with physician offices and medical groups. Hospices can conduct their own mini-demonstration projects by working with a single medical group to test models of simultaneous care, Schumacher suggests.
Precedents for simultaneous care
The simultaneous approach is not without precedent for American hospices. A number of specialized AIDS hospice teams in the 1980s experimented with simultaneous models that would be more palatable to the relatively young AIDS population. Pediatric hospice experts point out that parents of terminally ill children are unlikely to give up active treatment as a condition of enrolling them in hospice care. As a result, pediatric hospice programs have tended to relax that requirement. The new emphasis on simultaneous care suggests that these kinds of modifications aimed at expanding hospice access are appropriate for all patients with life-threatening illnesses.
Otherwise, as medical treatment continues to advance, the "terrible choice" will loom ever larger as a barrier to hospice referrals. Increasingly, end-of-life care providers will be dealing with patients who are not going to be cured but who may live for years with their illness. For such patients, extending their life span with adequate quality of life may be a good thing, not just "delaying the inevitable." If hospices can’t find ways to get involved in caring for such patients, they are in danger of being left on the outside looking in.
(Editor’s note: Larry Beresford is a health care journalist who specializes in hospice issues. He is author of The Hospice Handbook: A Complete Guide.)
A report issued late last year by the Robert Wood Johnson Foundations Promoting Excellence national program office in Missoula, MT, highlights some provocative new directions for end-of-life care policy and financing. One of its most provocative themes is a concept called simultaneous care.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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