A personal perspective on length of stay
By Larry Beresford
Editor
Hospice Management Advisor
When my father died at his rural Kansas home early on the morning of Nov. 2, he became one of those very short stay patients whose growing incidence bedevils the hospice industry. Although such patients, enrolled on the hospice benefit only days or hours before their deaths, raise serious financial and policy dilemmas for the hospice industry, families such as mine may view the interaction more favorably. In my father’s case, despite everything I know about the potential benefits of a longer involvement in hospice care, I believe that the hospice care he received in his final two days of life was just what he and his family needed.
My father spent more than six weeks in the hospital, some of that time on the intensive care unit, following major surgery to remove malignant tumors on his colon, abdominal cavity, and one kidney. Plan A, according to his doctors, involved stabilizing his condition so that he might return home, regain his strength, and then consider radiation therapy to treat the cancer’s residue. But that never happened because of a progression of unanticipated medical complications following the surgery, each of which was treated by the medical team.
Larger picture not revealed
In hindsight, his age (78), the stress of major surgery, and his weakened condition from perhaps years of undiagnosed cancer conspired with a string of bad luck and bad outcomes to prevent my father from ever turning the corner. While this drama was unfolding, the almost daily medical reports my six siblings and I exchanged obtained via long distance calls or during the weekend trips to Kansas we each made in turn remind me of nothing so much as the fable of the blind men and the elephant. Each report offered a glimpse of recent advances or setbacks, accurate for a piece of the whole at that moment, but failing to reveal the larger picture.
However, when at last it became clear to all that turning the corner wasn’t an option, my father declared that he wanted out of the hospital, and my stepmother brought him home to die. The local hospice arranged to have a hospital bed waiting for him, provided information about signs of approaching death, and showed up promptly to pronounce his death a day and a half later. Bereavement support had also been offered to my stepmother. But mostly, hospice provided the confidence that this brief crisis could be managed.
Several of my brothers and sisters, who were present at his death, have made a point of telling me that hospice’s presence was incredibly supportive to them. They wanted me to understand that things worked out just as they were supposed to, that he died where he should have been, surrounded by loved ones and without terrible pain or discomfort. In terms of one family’s experience, we were satisfied with the hospice care our father received, despite its short duration.
I was also repeatedly reminded, throughout the illness, how the best medical providers don’t always have the answers for serious illness, how fate and circumstance can circumvent the best laid plans or medical efforts to master the situation, and how determining a terminal prognosis much in advance of the end often is extremely difficult. In a sense, my father’s illness reflected in microcosm the lessons which have emerged from the rich array of data gathered in SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment).
The progression of my father’s illness was puzzling and frustrating, a six-week roller coaster of contradictory reports and setbacks. But I don’t believe his care was inappropriate. In my father’s case, his family and his doctors made the best decisions we could with the information available at the time. Only in retrospect was the treatment obviously futile. We all miss my father, and we might rue the fact that his cancer wasn’t diagnosed far sooner. But we have no recriminations or regrets over the medical care he received.
Nor was there lack of awareness of hospice or what it offered. Both my father and stepmother were retired hospice volunteers. All of my family members have signed copies of my 1993 book, The Hospice Handbook, which explains hospice philosophy, benefits, and admission criteria although a few intimated that they did not want to hear about "the H word" before its time. In this case, an informed patient and active family members, striving to do the right thing, pursued curative treatment for as long as it made sense and then shifted gears when it no longer made sense.
I can imagine that my father’s hospice care must have been quite costly, relative to what Medicare paid for it. But that is a policy issue between the hospice industry, the Health Care Financing Administration, and Congress not a patient care issue. I understand the financial challenges raised for hospices by short-stay patients. There may even be a need to rewrite the Medicare benefit to reflect the new realities of end-of-life treatment and to devise more realistic payment structures for short-stay patients.
But I need to point out, from one family’s perspective, that a very short stay in hospice was the right and indeed, the only answer realistically open to us. In fact, it was just what we needed, just when we needed it. To some hospice professionals, such a short stay might be viewed as a failure but not for our family. I hope the hospice industry can find a way to address the important policy issues, so that the benefits of hospice’s crisis management at the very end of life remain available to dying patients and their families.
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