Editor’s Note: This is the second Health Affairs Blog post from the author on End of Life & Serious Illness. His first post “Why Now? Concerns About End-Of-Life Health Care Policy” was published on December 19, 2016.

The Medicare hospice benefit was passed in 1982 as part of the Tax Equity and Fiscal Responsibility Act, the same bill that instituted diagnosis-related groups (DRGs) for hospital reimbursement. Since it was passed with a sunset provision, there was only modest growth in the number of beneficiaries until the hospice benefit was made permanent in 1986. Other changes included in the bill helped patients by allowing them to be under hospice care beyond the initial cap of 210 days.

The challenge facing hospice and the six-month prognosis eligibility is that predicting survival is full of errors. Even though the median length of stay in the Medicare hospice benefit was 18 days in 2016, the average was around 70, and 11 percent of patients survived beyond six months. While such long-lived prediction errors may be surprises, almost half of all people admitted to hospice are dead within 14 days and 34 percent within seven days. This distribution is almost identical to that observed in the original National Hospice Study almost 40 years ago. If predicting six-month mortality is hard, trying to identify patients with life-limiting diagnoses who are candidates for “pre-hospice” services makes eligibility determinations even more ambiguous.

The purpose of this second Blog post on end-of-life care is to link the difficulty of predicting survival to recent calls for early palliative care and the discomfort clinicians feel talking with their patients about dying. While there are many cultural factors that reinforce this image, ranging from denial of impending death to clinicians’ desire not to dash patients’ hopes, I maintain that Medicare policy formalizes it, resulting in the service silos that make clinical and fiscal accountability for the whole patient so hard.

While doctors can’t predict survival, they do recognize when it is just a matter of time for a given patient; that is, when the trade-off between curative intent and palliative disease management should be considered. Historically, general physicians have not been anxious to have these conversations nor are they terribly good at communicating about these issues. Indeed a recent national survey found that while most physicians feel that discussing end-of-life planning is important, nearly half are frequently unsure of what to say. Recently, intensive care unit (ICU) physicians have expressed exasperation at being the first to have end-of-life discussions with patients and families precisely because no one is doing so earlier.

The call for “earlier palliative care” now arises from clinicians, the dedicated few palliative and hospice care physicians who have been calling out from the wilderness for some time. However, in spite of calls for advance care planning and even with the designation of National Healthcare Decisions Day on April 17, it is too easy to put off these conversations until it is too late; this is evident, for example, when a medical crisis brings an already seriously ill patient with a life-limiting diagnosis but no advance care directive into the emergency department and choices have to be made “in extremis.”

To facilitate these early conversations, Medicare and other payers have adopted several policy initiatives. Medicare now reimburses physicians for advance care planning conversations, but the rate is lower than it is for a complex patient visit, perhaps reflecting the lower value placed on such discussions. Various commercial insurers have promoted early conversations with their subscribers who have life-limiting diagnoses, and demonstration projects and innovative programs across the country are aimed at finding ways to expand the scope of palliative care precisely to avoid ICU admissions in the last weeks of life. Whether these initiatives reflect a growing professional consensus or truly reflect the public’s willingness to embrace these conversations and to act on them in the face of ambiguity and the persistent force of hope is unknown.

Since most deaths occur among older Medicare beneficiaries, it is Medicare policy that has the greatest influence on the feasibility of these initiatives being broadly adopted and influencing public expectations. Prior to DRGs, most people expected to remain in a hospital until they were well enough to return home. Now, people expect a short stay and are not shocked that they’ll transition to another setting for further recuperation. The structure of the hospice benefit actually sets the expectation that, after “all else fails,” patients will be made comfortable until they die. Perhaps a restructuring of Medicare policy would actually result in changes in public expectations? That is, revised policy should encourage clinical and fiscal accountability for the whole patient throughout the course of the life-limiting illness. The trick would be to reshape all the frequently conflicting policies that affect end-of-life treatment and decisions in a way that reflects the values inherent in the palliative care movement.

The currently ongoing Centers for Medicare and Medicaid Services (CMS) “Choices” demonstration project allows participating hospices to enroll patients in a palliative care type of program for an average of $400 per person per month in hopes of furthering advance care planning discussions while the patient is still undergoing “active treatment.” This is a far less ambitious initiative than the “MediCaring” approach championed by Joanne Lynn and her colleagues almost two decades ago. MediCaring proposed to give Medicare beneficiaries with life-limiting diagnoses or frailty a package of supportive care services not historically reimbursed by Medicare in lieu of hospital care treatment and similar aggressive interventions.

CMS actuaries have always been nervous about such proposals since they fear the “wood work” effect of demand and do not really believe that beneficiaries will eschew expensive medical treatment. This fear should be allayed by the positive results of the concurrent care experiments, but these tightly controlled studies don’t reflect the boundless energy and creativity of the medical entrepreneurs that shape all aspects of our health care system.

Without real changes in policy supporting the call for early palliative care, programs have emerged to fill the void. First, as might be expected, many hospice organizations around the country have developed palliative care referral programs staffed by palliative care physicians and nurse practitioners. These programs position the organization to respond to referrals without having to initiate the hospice benefit to be reimbursed for the visits.

Advanced disease management programs operated by specialty physician groups and health care systems have emerged to provide more sophisticated symptom management support for patients whose primary care physicians aren’t able to help or who weren’t helped by a disease modifying treatment. These programs often have direct referral arrangements with one or more Medicare hospice programs. Among the most recent arrivals on the scene is Aspire Health, a rapidly growing company providing medical support and advice to patients with serious illnesses. The company works with health plans, applying a prediction algorithm to electronic data to identify patients with serious illnesses who are at risk of “churning” through multiple hospitalizations and treatments, some of which might be avoided were advance care planning to occur. Company clinicians reach out to patients to solicit their interest in receiving the service, supporting them until the decision to enter hospice is made.

These innovations reflect the history of Medicare policy: Add a benefit, and a new type of service provider emerges. Such additions include skilled nursing homes and home health for post-acute care, dialysis facilities practicing separately from nephrologists for end-stage renal disease patients, and free-standing hospices for end-of-life care. We then have to pay others to knit patients’ experience together by coordinating the many sources of care. This piecemeal structure assumes that the benefits of specialization outweigh the complications of coordination and the risks associated with repeated transitions. The one aspect of Medicare policy that has been accountable for all care is Medicare Advantage, but even there, patients entering hospice are essentially transferred from the plan to the hospice. With that, the plan drops clinical and fiscal responsibility for its patients at this important time.

When and how policies will be restructured to reflect the holistic vision of early palliative care for the whole person remains to be seen. There are many cultural and financial incentives at work that operate to stimulate more aggressive treatment of people who instead could benefit from intensive comfort care rather than days in the ICU. More ICU beds are being built, more procedures being done, and novel treatments invented and tried on many people destined to die while being treated. A balance is needed, but the vested interests and cultural expectations run strongly in the direction of more aggressive care. For clinicians, policy types, and civilians who want to facilitate the dignified death most Americans want, it is important to keep pushing forward.

Author’s Note

Vincent Mor is an unpaid member of the board of directors of Hope Hospice and Palliative Care of Rhode Island.