Over a year and a half ago, President Jimmy Carter announced that he was entering at-home hospice care, which is generally reserved for people whom doctors expect to live less than six months. His wife, Rosalynn, joined him last fall and died a few days later.
While her experience is more typical of hospice patients—75 percent live less than 90 days—his longer tenure, while unusual, is not that rare. Ten percent of people in hospice care survive longer than 287 days, according to a National Hospice and Palliative Care Organization (NHPCO) study. Like Carter, many long-term survivors may attend functions, such as a spouse’s funeral, and be capable of continuing with aspects of their life. Carter is reportedly hopeful that he will be able to vote for the next president.
The most unusual aspect of the former president’s situation is that he shared details of it with the public, a rarity among both former presidents and celebrities. By making his decision open, he shone a beacon on hospice care and how unexpectedly doctors’ predictions can play out. He also allowed the public to see his vulnerability and, thus, provided a window into end-of-life issues that generally happen behind closed doors.
For caregivers, the Carters’ experiences can provide not only a reminder of the different turns that caregiving can take but also a peek into how hospice care can work. If you and your loved one are considering hospice care, here are some thoughts to keep in mind:
1) Hospice Does Not Equal Death
Hospice care is designed to provide comfort and support for both a family and the patient during the last phase of life. It does not promote the patient’s death or speed death along. Instead, hospice care allows everyone to let go of searching for a cure, which may provide an opportunity for more connection, comfort, and pain relief. The vast majority of patients spend their days at home with family and friends. Medical professionals often prescribe medications to reduce pain and increase comfort, but the patient and their loved ones are freed from the pressure of experimenting with further interventions.
2) Hospice Can Be Reversed or Shifted
While most hospice care ends with death, about 15 percent of patients end hospice care for other reasons. Of that group, more than a third have a change in diagnosis and are no longer considered terminally ill, according to the NHPCO study. Another third decide that they no longer wish to be in hospice, while a few simply move or change providers. At-home hospice care can also go through periods of change, including short-term moves to facilities that provide temporary 24-hour care or even a permanent move to such a facility.
3) Outcomes Vary by Illness
Patients with dementia tend to spend the longest time in hospice care, an average of 181 days over their lifetimes, according to a 2020 NHPCO study, while people fighting Covid or kidney disease tend to have the shortest average lifetime stays, 28 days and 35 days respectively. These numbers vary considerably and can perhaps be better understood by looking at the median number of days in hospice, because patients like Pres. Carter with particularly long stays have an outsized influence on averages. For dementia, the median hospice stay was 56 days, while it was four days for Covid patients and seven days for people with kidney issues. Cancer patients had a median stay of 17 days in hospice, while people with heart, lung, and stroke disorders spent between 31 to 40 median days in hospice.
4) A Unique Time
People who die of sudden illnesses or accidents often don’t get the chance to say goodbye, which can make death especially painful for those left behind. But death in hospice care can provide a unique time to both connect and let go. Moments at the bedside of a dying loved one can provide some of our most treasured memories. Decades later, we often recall them with perfect clarity. This can be a mixed blessing. It’s common to feel regret about ineffective or incomplete expressions to your friend or family member, but, if you have the emotional wherewithal, take the time to think about what you wish to say and say it. You’ll be glad you did, but if you can’t, that’s okay. Death is hard. There is no right way to handle it.
Thank you for reading, please share with a friend, and be well! —KK
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