On February 18, Jimmy Carter, America’s longest-lived president at age 98, opted to receive hospice care at his home. The Carter Center issued this statement: After a series of short hospital stays, former US President Jimmy Carter today decided to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention. He has the full support of his family and his medical team.
Our 39th president and Nobel Prize winner has had several bouts of cancer and experienced numerous falls in recent years. He kept bouncing back, continuing his work with Habitat for Humanity and teaching Sunday School. Now, in his waning days, he is educating Americans about hospice, a program most of us understand only vaguely.
What is hospice care?
For someone with an incurable medical prognosis who rejects medical intervention that may be fruitless or just intolerable, hospice may be the best choice. Hospice is for a person who is expected to live for six months or less.
Patients under hospice care do not receive medical interventions designed to cure their illnesses. Instead, they receive pain relief, and emotional and spiritual support for themselves and loved ones. This enables the patient to live his/her last days as fully as possible, with the highest possible quality of life. Amy Tucci, president of the Hospice Foundation of America, puts it this way: “The goal is to help people die pain-free…with dignity and surrounded by family and friends.”
According to the National Hospice and Palliative Care Organization, 1.6 million Medicare beneficiaries received hospice care in 2018. The average patient received hospice care for 93 days. The diagnoses of hospice patients that year were, in descending order: dementia (including Alzheimer’s and Parkinsons); respiratory illness; circulatory/cardiac disease; stroke; and cancer. Typically, the referral to hospice comes from the treating physician.
Do not confuse hospice care with medically assisted dying. In fact, some who receive hospice services may leave the program if they go into remission or otherwise improve.
The hospice team
The hospice care team typically consists of social workers, medical nurses, doctors, and spiritual counselors. Medicare-certified hospice services must have physician, nursing and pharmacy services on call 24/7. For at-home services, nurses aides will come to the home throughout the week to help with more strenuous tasks, such as bathing. Nursing care becomes more frequent as the patient requires more intense care or is deteriorating rapidly.
Home preferred to hospitals
Most people say they prefer to die at home, surrounded by familiar people and things. This has been the trend in recent years. According to a study in the Dec. 12, 2019 issue of The New England Journal of Medicine, home has replaced hospital as the most common place of death. It therefore is essential for patients and families to keep their eyes open about what at-home hospice care actually entails. It is generally not round-the-clock care. Hospice trains one or more family members to serve as the patient’s primary caregiver(s). For some family members, the demands of the role can be overwhelming. Dr. Haider Warraich of VA Boston Health System comments: “You’re handing off the primary responsibility for the daily care of the patient from the medical system to the patient themselves and/or their informal caregivers.” Read more about this issue in the National Public Radio article, Patients Want to Die at Home, but Home Hospice Care Can be Tough on Families.”
Many people are not aware that grief counseling is also offered by hospice, both in anticipation of a loved one’s death and after it occurs. Counseling can be in person, via zoom or phone. Counseling specifically for children is also available. Some hospices offer weekend programs and summer camps for children and teens who are grieving the loss of a significant person in their lives.
Hospice benefits are available through Medicare, Medicaid, the Veterans Administration and private insurers. Hospice providers will do the legwork and let you know what benefits are available.
More information is available from the Florida Hospice & Palliative Care Association, which maintains a directory of hospice providers by county. Check it out here.
Thank you to President Carter for your years of service and your many humanitarian contributions. Wishing you and your family peace in your journey.