By Amy Tucci
A media microscope recently zoomed in on hospice, providing evidence that this rapidly growing sector of health care needs greater oversight.
But amid the criticism, it is imperative to understand the nature of hospice; it is seldom a place to go to but a philosophy of specialized care that most often treats a patient and, importantly, aids the caregiver in the home. Hospice care itself is not a problem in need of a solution.
Hospice first became available in this country in 1974 and mercifully changed the way we could die in America. There are more than 5,500 hospice programs in the United States today that cared for an estimated 1.6 million patients last year. It has provided choice, pain and symptom control, and quality of life to patients whose terminal illnesses and conditions.
So as the media suggest evidence of wrongdoing by a few, the hospice experiences of people like Karen Jones should not be overlooked. Karen of Rockville, Md., was a nonsmoking, marathon-running, working mother of two boys who was diagnosed with Stage-4 lung cancer at 41. Two years later, after surgeries, trips to world-renowned cancer hospitals and rounds of chemotherapy, Karen’s oncologist sat by her hospital bed and told her that all known protocols had been exhausted and nothing more could be done.
Hospice care is restricted to those whose life expectancy is six months or less, so Karen rejected the idea of hospice at first, fearing it would symbolize defeat. But after days of serving as her primary caregiver, caring for their young sons, and trying to do his regular job, her husband Bill tearfully confessed to Karen that he could not manage her condition alone, so together they called a local hospital to provide care in their home.
Soon Karen’s life and that of her family found a new normal. Although her lifespan still could be measured in months, she was again able to attend mass, visit with friends, and cheer at her son’s football games. Her physical status improved enough that she could drive again, and she joyfully chauffeured the boys to activities.
After several months with hospice, Karen’s condition began its inevitable decline. Hospice was there at the end but our cameras were not. Her hospice team joined Karen’s friends and family at the memorial service. Months later, hospice bereavement counselors regularly check in on Bill and the boys.
Karen, Bill and others shared their stories in our television program called “Hospice: Something More,” funded by the John and Wauna Harman Foundation. It’s an unvarnished look at the lives of hospice families and their families, what hospice care should be, and how it helps terminally ill people live until they die.
Hospice cares for the person who is ill in several ways: providing medication and medical equipment, regular visits from clinicians including the hospice doctor, and emotional and physical support to caregivers and families. Grief support services are offered for a year after the death.
Individual hospice providers deserve scrutiny. Medical knowledge continues to evolve and the health care provider market has changed dramatically, but let’s also appreciate what hospice care has done for millions of dying people and their families in recent decades. That should not change with the future. Hospice provides “something more” for those whose illness has reached the limit of curative treatment.
— Amy Tucci is president and CEO of Hospice Foundation of America, which informs people about hospice care, end-of-life care options, grief and caregiving. It is neither a membership nor a trade organization. “Hospice: Something More” and more information about hospice care, caregiving, and grief, are available on streaming video at hospicefoundation.org