How Hospice Saved My Dad’s Life
March 29, 2021
by Robert J. Laskowski, MD MBA
My Dad passed away this past year, peacefully at home after a full life of 93 years. He was a hospice patient—twice. Dad was a member of a seemingly unique but growing group of individuals-hospice survivors. Hospice is a program of care designed for the terminally ill. Hospice, quite literally, saved my Dad’s life.
My Dad’s experience has many lessons. These lessons speak to us about healthcare—its goals, content, style and its adequacies and failings. These lessons are not about the high-tech strengths of American medicine, but rather of the low tech, high compassion, the thoroughly human power of healing. My Dad’s hospice experience taught me, a physician/executive, much about medicine. And, as a person, it continues to teach me about life and myself.
My Dad suffered from respiratory symptoms. A non-smoker, he had experienced significant asbestos exposure from his work as a young man in a chemical plant. This left him with some pulmonary scars, but no symptoms until late in life. Gradually over the course of a decade he developed shortness of breath when he exerted himself. He was a vigorous gardener and active walker. Slowly these activities both diminished. The precise cause of his respiratory decline remained undiagnosed and untreated until the heat and humidity of a summer day forced him to his physician’s office. At age 91, he was diagnosed clinically with COPD-chronic obstructive pulmonary disease and treated with home oxygen and several medications. Other aspects of my Dad’s health had also been in decline. His balance was unsteady; his memory, once acute in its accuracy, was fading; his judgment was unreliable; he was having serious trouble caring for himself. Fortunately for him, Dad had alive-in home health aide. She enabled him to stay safely in his own home.
Dad and the family had a conversation some years before. While not generally resistant to medical care, he did not want “to end up in the hospital.” So, when my Dad’s doctor asked my sister “Do you want me to get an x-ray?” with the qualifying statement “I don’t think it will have any effect on his treatment,” the question of how to best care for Dad at home jumped to mind. Dad’s frailty and the prospects for his rapid decline abutted against his desire to live at home.
Most older individuals want to live their later years in their own homes. How to do this is a challenge, especially when a debilitating illness arrives. The American healthcare system is designed for diagnosis and cure. However, living requires more than doctors’ visits, tests, hospitals and medications. To remain at home when one is frail and failing requires support. Families provide most of this support. As a person becomes frailer, families themselves need support. This support is often difficult to find, expensive, uncoordinated and uncovered by insurance. For those facing a terminal illness, hospice can help.
The Hospice movement began in the United States in 1974 with the founding of the first US hospice program based on a model developed in Britain. Hospice care was uncovered by medical insurance until 1983, when Medicare initiated its hospice benefit. As defined by Medicare the Hospice Benefit provides services for 'individuals whose life expectancy is less than 6 months, as certified by a physician. These include nursing care, social work consults, medications, and home medical equipment. These services are important to patients and they are a vital safety net for the family caregivers of those patients – they provide more than care. They provide confidence to family members who provide the bulk of care to the chronically ill. This confidence allays stress and allows patients to have the support they need to live their last days as they wish.
In my Dad’s case, my sister was his primary organizer of my Dad’s care. She lived close by and, while working full time, arranged for and supervised Dad’s live-in help. As a female and a family member, my sister is typical of most caregivers in the United States. The fact that Dad’s doctor questioned the need for an x-ray immediately raised the uncomfortable prospect of unmanageable family burdens of a rapid further deterioration in my Dad’s already frail health. Dad already had a live-in aide, yet clearly that would not be enough. How could my sister manage the inevitable but unpredictable crises that would occur? Who could help her?
Hospice supplied that help-at least for a time. Dad’s doctor agreed that the severity of Dad’s respiratory illness combined with his other medical problems gave him a life expectancy of less than 6 months. The hospice benefit began with the visits of a social worker and a nurse. These individuals were the key. Their primary clinical tools were confidence and compassion rather than medicines and technology. They quickly gained my Dad’s and, most importantly, my sister’s trust. Their message was simple and clear—you can do this. You can continue to live in your home. You can care for your dad. We will be here to help you. We will always be available if you need us.
These are the consistent messages of any hospice.
After a few months of decline, a surprising thing happened. My Dad stopped dying. He was frailer, but at home, and happy. During this time, he had virtually no “medical care” in the usual sense. No doctors’ visits, no blood tests, no x-rays, no emergency room visits, and very few medications. He did have regular visits from a hospice nurse, very modest help from a hospice aide and lots of compassionate attention. My sister had something which was most important for her—someone to call. Though seldom used this immediate access to a knowledgeable professional proved invaluable. It kept Dad home and avoided the trauma and risks of an ER visit. I realized that in hospice, the family, not just the sick individual, is the real patient.
My Dad’s stabilization was great news. We viewed it as a gift of precious time together. There was one downside. The Medicare Hospice benefit requires a patient to get sicker.
Almost all hospices are certified by Medicare. Medicare administers hospice as a financial benefit rather than as a clinical service. Hospice providers are required to meticulously document their patients’ decline. Bizarrely, weight loss, loss of appetite and declining abilities are “good” in the Medicare world of hospice. They enable a patient to continue to receive the hospice benefit. My Dad’s stabilization proved problematic and he was discharged from hospice care.
This transition back to “regular” care was traumatic. The low-tech compassionate care of hospice was lost and with it all the services that enabled Dad to stay home. There was no nurse to call at night. Dad’s home oxygen provider changed with the change of benefits. He needed to be recertified by a doctor in person, but no doctors would make a house call. It was winter, flu season and Dad was immobile. A visit to a doctor’s office was an unthinkable risk given his frailty. “Regular” healthcare for my Dad was bad healthcare.
It is ironic that the hospice benefit is so tightly regulated. The cost of hospice care is less than “regular” care. Medicare regulations are a response to the growth of the use of the hospice benefit. For-profit hospices have grown exponentially over the past decade. Regulators have concerns that all hospice care may not be “appropriate.” Inthe effort to avoid abuse, however, the goal of providing “right care, in the right place, at the right time” can easily be lost. In my Dad’s case, it clearly was.
Hospice is a part of a larger concept of Palliative Care. Palliative Care is a clinical approach to caring for individuals with serious illnesses, which may not be immediately life threatening. It involves the coordination of healthcare professionals to focus on maximizing one’s ability to live with an illness. Symptom control and functional status are its goals. The problem with Palliative Care is that it is funded through a patchwork of existing services. It is not, at least not yet or in most places, a coherent program of care like hospice. The palliative care programs near my Dad offered little beyond “regular” care. The reassurance that we all needed—that we “could do this”—was sadly absent.
As a family, we figured out ways to keep Dad home, with great difficulty and without the help of hospice. After about 9 months he again declined and was readmitted to hospice. He was able to die at home, peacefully, as he wished.