In recent years, America’s hospice programs have experienced an epidemic of late admissions and very short-stay patients – patients who are referred for hospice care mere days before their deaths, typically in a state of acute medical, emotional and family crisis.

Even though the Medicare Hospice Benefit is explicitly designed to cover the final six months of life, half of all hospice patients nationwide are enrolled less than three weeks before their deaths and 37 percent spend less than a week in hospice, according to data from the National Hospice and Palliative Care Organization. Some patients are referred so late that the hospice team can’t get out to see them before they die.

Because of the problem of late admissions, VITAS and other hospices have been forced to modify team operations to emphasize emergency response, crisis management and hurried attempts to maximize quality of life in the few precious days before the patient dies. That crisis-management approach is in sharp contrast to the hospice ideal of building relationships, controlling and managing distressing symptoms such as pain, encouraging meaningful emotional closure for significant relationships, and facilitating a peaceful, self-determined dying experience for the patient and grief support for his or her loved ones.

The Hospice Option

There is much that the interdisciplinary hospice team can mobilize in late-referral situations to reduce the stress and chaos of the patient’s final days. Most families will say that the experience of a very short hospice stay for a dying loved one still gave them invaluable support and peace of mind and thus was preferable to no hospice admission at all. Even in a day or two, the hospice team often can get the most pressing physical symptoms under control while family survivors will enjoy the full benefit of hospice’s bereavement program for a year or more after the patient’s death.

Yet the regret of hospice professionals in such situations is deeply felt, because they know from experience how much gentler the patient’s dying process might have been. So much more could have been done to make the final chapter of this patient’s life comfortable, peaceful and satisfying – with enough time to do the job. And that complaint is echoed countless times by bereaved family survivors in hospice grief support groups: If only we had known about hospice sooner.

Why Are Hospice Admissions Delayed?

Why are there so many late admissions to hospice care? Part of the answer lies in the widely held symbolic meaning of a hospice referral as a “death sentence” – even though there is no scientific evidence that referral to hospice care actually shortens patients’ lives and, in fact, the opposite may be true.

Physicians are reluctant to acknowledge the “failure” of their care and resist initiating difficult conversations with terminally ill patients. They lack confidence in their ability to determine a six-month prognosis. The federal Center for Medicare and Medicaid Services, however, has advised that physicians may be worrying excessively about the six-month rule and what it means.

Late Hospice Referrals

What typically happens when a terminally ill patient is referred late to hospice – just days before death? The patient or the physician may have avoided discussing the hospice option until all curative or disease-modifying treatment alternatives were exhausted. Also, the burden of symptoms from the illness and the side effects of aggressive treatment likely have multiplied to such a point that everything seems to be going wrong at once, both in the patient’s physical condition and in family dynamics, emotions and the spiritual realm.

Late referrals can introduce discontinuities into the patient’s care at a most stressful time, rather than allowing for a more orderly transition and a relationship of trust to develop between the hospice team and the patient. In some cases, the crisis may land the patient in the hospital and even preclude the opportunity to die at home, which public opinion research has identified as the preferred site of death.

Terminally ill patients and their families typically have been so focused on fighting the illness that little attention was paid to the eventuality of dying. Funeral plans, wills, advance care directives, financial arrangements and the mending of long-estranged relationships are among the issues that may have been neglected. Such unaddressed concerns can multiply the natural fears and anxieties that patients and families experience at this time of life.

Another serious consequence from late hospice referrals include adverse economic implications for health care payers, since many of these patients have received expensive disease-modifying treatments that, in hindsight, can be viewed as ineffective and even futile.

Introducing Palliative Care Consultations

The ultimate frustration of late referrals lies in trying to manage a hospice benefit that works well once patients are enrolled but that presents barriers to access and optimal utilization. One possible answer to this dilemma that has emerged in recent years is the multidisciplinary palliative care consultation service, whether based in the hospital or in the community. In the last session of Congress funding for the physician component of palliative care consults actually passed and, as a result, many hospices are working with local hospitals to implement this change to the benefit of patients and providers alike.