Revisiting Hospice: The Continued Drive for Acceptance

The contemporary hospice movement took root under the direction of Dame Cicely Saunders in the UK in the mid1960s with a holistic, team-based approach to bringing comfort and dignity to those who were dying. Imported into North America a decade later, hospice proliferated after the adoption of hospice care as a Medicare benefit in the 1980s. The Medicare Hospice Benefit stipulates who can get hospice and outlines specific requirements for the hospice team. This team will include a medical director, nurse case manager, social worker, chaplain and volunteers. The goals are to assure patient comfort and dignity as they approach the end of life. The main criterion for hospice eligibility is that an individual has a terminal illness and that if the disease runs its normal course, death would be expected to occur within 6 months. So after four decades of hospice availability, how are we doing?

There are currently over 6,500 Medicare-certified hospices in the United States serving over 1.7 million Medicare beneficiaries annually, costing $26 billion per year. Approximately 50% of all Medicare decedents record at least one day under hospice services. By all accounts, patients and families appreciate their hospice providers. The focus on compassionate care, the power of the interdisciplinary team addressing the physical and psychospiritual aspects of living and dying, and the centering of patient and family values in the care planning process is an appealing and essential part of this unique medical model. While there have been some adjustments in the regulations governing hospice over the years, the essence of the model and payment system is generally what was established in 1982. For example, recognizing that prognostication is an inexact science, Medicare now allows unlimited benefit periods, as long as the patient continues to meet specific clinical criteria.

Hospice is not about giving up—it’s about ensuring comfort, dignity, and quality of life when cure is no longer possible. Patients and families who embrace hospice often say, ‘I wish we had called them sooner.’ Everyone deserves compassionate end-of-life care

Despite the growth and ubiquity of hospice agencies, there still remain pockets of resistance and reluctance to hospice care. Some continue to see hospice as “giving up,” a last-ditch option when “all hope is gone.” We need to dispel that notion once and for all! Contemporary medicine continues to be caught up in an attitude of “fixit” mentality—as physicians, we are taught to look for broken things and fix them and if we can’t, then somehow we have failed our patients. The reality is, however, that the vast majority of us will at some time be diagnosed with some disease that can’t be fixed. We are all going to die, and most of us will have a good idea as to what is going to be on our death certificate before we get there. While it may be of value to explore options to live longer—with the caveat that we are able to live lives of meaning and joy—my observation is that when we recognize the reality that some condition or disease will cut our life short, we have the opportunity to dig deeper into the richness of life and relationships and ferret out what is most meaningful in life. Denying that reality can obscure that opportunity.

As opposed to “giving up hope,” it is precisely the hospice environment that provides the greatest opportunity to ensure comfort and optimal quality of life when a cure is no longer possible. We must continue to advocate for patients and families to explore hospice options when a progressive disease has entered their lives and life expectancy is limited. There is no downside which talks to the team learn what they can offer to enhance the quality of life and bring resources to patients and their families. The most common comment that I have heard after families’ involvement with hospice has been, “I wish we had called them sooner!”

It is the joy and honor of hospice teams to be with those in their most vulnerable moments at the end of life. Everyone facing that reality deserves the opportunity to experience the enhanced quality of life that hospice care provides. We must continue to emphasize the availability and benefits of care and overcome the negativism that can invade the conversation. Allow hospice to bring that to your family and those who you serve.