The Truth About Hospice Care: Why More Time Matters

Our 39^th US President Jimmy Carter will celebrate his 100^th birthday in October, in the modest ranch house he built with his wife Rosalynn more than 60 years ago. For 18 months now, in Plains, Georgia, President Carter has been receiving comfortable, compassionate home hospice care as his late wife did, surrounded by their loving family and friends.

As a hospice professional and someone who has been part of my own loved ones’ end-of-life journeys at home, the Carters’ story brings me joy. Whenever I hear that anyone is receiving hospice care, I breathe a sigh of relief. Because I know they are in good hands. They have the support they need. Their families are going to be cared for, and their transition, as sad as it may be, is going to be a little bit easier, on their own terms. 

President Carter’s length of stay in home hospice dispels some prevalent myths that I hope to clear up, because when hospice care is misunderstood, it causes families to delay this priceless care for their loved ones.

I have found, in reality, that the earlier a person can begin hospice care, the better their quality of life becomes. 

Myth 1: The decision to “go into” hospice is final. 

Hospice is not a place, it is a compassionate philosophy of care, more often provided in private homes than in a facility. Our services can come to a patient wherever they happen to be. If you are living at home or in an assisted living facility or nursing home, if you are temporarily hospitalized, it does not matter, we can come to you.  

Hospice services can follow you wherever you go, so it is perfectly fine to start at your current home and later transition into a loved one’s home, a senior living community, or a nursing home if your needs change. And contrary to popular belief, you can choose to leave hospice care whenever you like. There is always the option to recertify for services again sometime down the road. 

Myth 2: Hospice care is just about managing pain. 

While palliative (comfort) care is a critical component, hospice services are so much more than that. We take a holistic, interdisciplinary approach that offers emotional, spiritual, social, psychological, and bereavement support for both the patient and their family. Adequate time to provide end-of-life education, to discuss what matters most to the patient, and to personalize a plan of care according to their wishes alleviates not just physical symptoms, but also the emotional and mental toll of advanced illness.

The last year of life typically involves a lot of stressful back and forth between emergency visits and hospitalizations, doctor appointments, tests, and treatments. Choosing hospice can prevent unnecessary health care utilization, reducing costs and stress on the whole family. Statistically, the total effect not only improves satisfaction and quality of life, it has been shown to extend life at the patient population level.  

Myth 3: Hospice care is only for the last few days of life.

The most recent data published by the National Hospice and Palliative Care Organization (2023) says that the median length of hospice stay is only 17 days. Over 28 percent of patients die within seven days of hospice enrollment. Yet, patients who only experience hospice for their last few days do not get the full breadth of the benefit.

Believe me, even one day with hospice makes a difference and is better than none at all. But you have the right to choose hospice care as soon as your doctor certifies that you have a life expectancy of six months or less and you decide to stop trying to cure your terminal illness. Not only that, but once you start hospice services, as long as your medical prognosis has not significantly improved, your doctor can continue to recertify you indefinitely, however long you may live. 

Myth 4: Hospice care means giving up hope.

With an insider’s view of countless hospice experiences, this does not resonate at all. When a patient decides to conserve their energy for a new set of positive priorities—quality time with the people and places they love; more control over their end-of-life experience—it can be amazingly empowering, even liberating. 

We love to get the time and opportunity to help patients fully embrace the remainder of their life with independence and dignity. Time to tend to any relationships that may be unresolved, fulfill final wishes, reflect on their life stories, and leave a legacy that is meaningful to them. It is incredibly rewarding and life-affirming work.

Start the conversation!

Hospice awareness is improving dramatically, and physicians are more attuned to having end-of-life conversations with their patients than they were ten or 20 years ago. If you feel tired and overwhelmed but need the words to talk about it, call a hospice provider. We can help you understand your individual circumstances, think about your health care goals, and start that conversation with your doctor. Knowledge is power.