In 2023 the public benefited from the willingness of President Jimmy Carter and his family to openly share their health updates. Hospice care has gotten a renewed focus, and the Carters’ end-of-life journey is illuminating a complicated story of hospice use in the United States. Different sides of the same coin, the hospice experiences of President and Mrs. Carter are kindling a much-needed conversation around this underused service.
Hospice provides dignified, compassionate end-of-life care to patients and their families, offered at little to no cost through Medicare, Medicaid and private insurance. First introduced to the United States in the 1970s, the modern hospice benefit has been available to Americans for nearly five decades, but recent data reflects the general public’s hesitation to pursue end-of-life care. According to the National Hospice and Palliative Care Organization, the median length of time a person spends on hospice in the United States is only 17 days, a small fraction of the time they may be eligible to receive care.
Barriers to hospice care are not so much financial or geographical. In many ways, the greatest barrier to hospice is emotional. Of all the hospice misconceptions, the most detrimental may be that hospice is “giving up.” The reality is that patients who begin hospice earlier have higher quality of life, fewer hospitalizations and lower medical costs.
As demonstrated by the Carters, hospice is not throwing in the towel. Hospice is healthcare. It is a shift in focus from curative treatment to comfort and quality of life. Hospice is also not indicative of imminent death, nor is it a death sentence. In fact, a widely cited study has shown that hospice patients live an average of 29 days longer than terminally ill patients without hospice care.
Hospice is available to those with a life expectancy of six months or less, and as President Carter has shown us, patients can outlive an initial six-month prognosis. It is not uncommon for hospice patients to receive hospice recertification, extending their end-of-life care. One of the most common sentiments hospice care teams hear from their patients and families is, “I wish we had started hospice sooner.”
Hospice is not a place; it’s a philosophy. Hospice is a philosophy of care that celebrates life, and it is a commitment to the unique wholistic needs of patients and their loved ones.
The vision of hospice care is articulated well in the poignant words of British nurse, physician, social worker, writer and founder of the modern hospice movement Dame Cicely Saunders, who once said, “You matter to the last moment of your life. We will do all we can, not only to help you die peacefully, but also live until you die.”
I’m hopeful that the Carters’ decision to receive end-of-life care is driving a shift in public perception. More people are learning that hospice is not so scary after all. Since President Carter enrolled in hospice last February, he and his family have been able to focus on making the most of their final days together. And even though Mrs. Carter’s personal hospice care only overlapped with President Carter’s for a couple days, she still benefited from her husband’s care as a close family member. Their public journey has been able to show all Americans that memories can still be made and time with loved ones celebrated while receiving hospice care.
Hospice and palliative services honor the end-of-life journey with reverence and dignity. End-of-life care isn’t just about making death easier; it’s about making the most out of living.
Heath Bartness is founder and chief executive officer of St. Croix Hospice, a hospice organization headquartered in Minnesota that serves 10 states in the Midwest.
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