Former President Jimmy Carter and his wife, Rosalynn Carter, have both transitioned into hospice care at home. Mr. Carter, 99, decided to forgo additional medical interventions in February after facing several health issues in recent years, including melanoma — a skin cancer that spread to his brain and his liver. The Carter Center announced that Mrs. Carter, 96, who has dementia, entered hospice in November, and that “she and President Carter are spending time with each other and their family.”
Hospice provides end-of-life palliative care with a focus on the patient’s comfort and dignity. Pain relief is a priority, while treatments intended to prolong life are discontinued. Hospice agencies offer access to physicians, nurses, health aides, social workers and chaplains who assist patients and their families with everything from symptom management to funeral arrangements. The care is typically provided where the patient lives, whether that’s at a private home or in an assisted living facility.
“When people are close to the end of their lives, going to the hospital does not make them feel better anymore, because there’s not necessarily something that we can do to address their underlying illness,” said Dr. Carly Zapata, an assistant professor of medicine at the University of California, San Francisco, who specializes in palliative care. Hospice “is really focused on caring for people — and their caregivers or loved ones — to help them have the best quality of life possible for the time that they have left.”
Here’s what hospice care entails and how to decide if and when it’s right for you or your loved one.
Who is eligible for hospice care
To receive hospice care, a person must have a terminal diagnosis with a prognosis of six months or less to live. In most cases, a physician recommends hospice; patients and their families can also take the initiative and contact hospice agencies, although a doctor must attest that a person meets the qualifications.
“It’s a hard conversation to have,” said Dr. David Casarett, a professor of medicine and section chief of palliative care at the Duke University School of Medicine. “Enrolling in hospice means that you have to confront that person looking back at you in the mirror and realize that you’re going to die.”
Most people receive hospice care for less than one month. In the rare instance that a person lives longer than six months while in hospice, a physician will re-evaluate the person’s health to assess whether the patient still qualifies.
Many people would benefit from enrolling sooner so that they can receive hospice services for months instead of weeks, Dr. Casarett said. But, he acknowledged, “that doesn’t work for everybody — many people really want to continue aggressive treatment up until the very end.”
How to choose a hospice care agency
Hospice is provided regionally, so the first step is to search for agencies that serve your county. Nursing homes and assisted living facilities usually have contracts with one or two local hospice agencies.
Medicare covers the cost of hospice care. (In most cases, the people who require hospice are on Medicare because they are over 65 or have a qualifying disability.) Medicaid and private insurance also typically cover the service, although just like any other health care cost, your insurance may require that you use a specific provider. For people who are uninsured, some hospice agencies operate as nonprofit organizations or provide services free of charge.
If several options are available, “I really strongly recommend that folks talk to more than one hospice” to find an agency that best matches their needs, said Katie Wehri, director of home care and hospice regulatory affairs at the National Association for Home Care and Hospice.
“There are requirements from Medicare that all hospices have to abide by,” Ms. Wehri said. “But then hospices can also choose to deliver additional services, and how they deliver those services is really up to them.”
Ms. Wehri’s organization provides a list of questions for families to ask when talking to potential hospice providers, such as: “What kind of out-of-pocket expenses should be expected for hospice-covered services?”; “How often will a hospice team member visit, and how long will most visits last?”; and “What happens if I need to go to the hospital or the emergency room?”
Dr. Zapata also advised asking about how medical care will change when the patient enters hospice, such as which treatments and medications will be stopped and who will oversee care. Hospice agencies employ their own physicians, but if you have a strong relationship with a primary care provider or a specialist you’ve been seeing, you can request to have that physician continue to supervise care.
“Sometimes people enroll in hospice expecting everything to be the same,” Dr. Zapata said, and when that isn’t the case, it can be “an unwelcome surprise.”
What hospice care entails
Hospice care is most intensive at the beginning, when a person starts the transition, and at the end, as the person is closer to dying. Hospice agencies provide a range of services, support and supplies to help during the end-of-life stage, including medication management, such as for pain, nausea and depression; equipment like hospital beds, wheelchairs or oxygen; help with navigating legal documents and medical bills; and bereavement services for family members.
Nurses are the hospice providers who visit most often. Appointments may be scheduled every day, but more typically they occur one or two times a week. The nurse will check vital signs, ask about symptoms and consult with the supervising doctor about the need for any changes in medication. The nurse also educates caregivers about how to administer medicines or how to assist with a patient’s personal care, like bathing.
Hospice teams provide crucial emotional and logistical support, as well. Social workers might assist in setting up a will, power of attorney or funeral arrangements. Spiritual care providers — religious or nondenominational — can help a person come to terms with the end of life through prayer or facilitating conversations with loved ones.
For all the benefits and services offered through hospice, though, it does not provide round-the-clock, in-person assistance. If a person is undergoing hospice at home, “It is the patient’s family or friends who are often providing care to them,” Ms. Wehri said. (In assisted living facilities, staff members will administer care.)
Because of this reality, “hospice almost never provides the level of support that families expect,” Dr. Casarett said. “That’s nothing against hospice; it’s just when you’re trying to take care of somebody who’s dying at home, you need all the help you can get.”
If someone’s needs are beyond what can be managed at home, many hospice agencies have inpatient facilities, or they work with a hospital or a nursing home. But those inpatient stays are intended to be used for temporary, acute concerns, such as if medication needs to be administered intravenously, and insurance will often cover them for no longer than a week.
For people who live alone, or if receiving care from family is not an option, it may be necessary to hire a home caregiver or to move to a nursing home. Unfortunately, these options can be expensive and are not typically covered by insurance. Experts say this is the biggest challenge when it comes to hospice care.
When a loved one is being cared for at home, a “beautiful part” of hospice is that, logistically, it doesn’t really require any preparation, Dr. Zapata said. The people who deliver the medical supplies will rearrange your furniture to fit a hospital bed. The social worker will help make sure advance directives are taken care of.
Instead, she said, the preparation that’s needed “is the acknowledgment that someone is getting close to the end of their lives” and deciding how to make the most of that time.