Timothy Greene was diagnosed with epilepsy when he was 11. He went on to graduate from the University of California, Berkeley, with a bachelor's degree in economics, from Stony Brook University with a master's degree in economics, and from the Wharton School of Business with a master's in health care management. Subsequently, he had a long and distinguished career as an economist who advised Congress about Medicare and other health care policies.
In later years, he developed a foot drop and used a cane or walker but remained physically active and mentally sharp, says his wife, Constance Gemson. Then on April 30, 2023, Greene, who was 75, had a seizure outside his New York City apartment, fell, and hit his head. The blow caused a brain bleed that affected his speech and mobility. After surgery and prolonged stays at three hospitals, Greene was transferred to a rehabilitation center in July. A few weeks later, he was moved to a nursing home floor, where he declined rapidly. “He couldn't speak or get out of bed into his wheelchair,” says Gemson, also 75.
Given Greene's limitations and quality of life, Gemson believed it was time to discuss hospice. “I felt he'd get more personal and humane care,” she says. Instead of taking him home—“If he fell, or if anything was problematic, I wouldn't be able to handle it, and I'd have to call 911”—Gemson asked that her husband begin hospice care in the nursing home. Once Greene was moved, Gemson, a former hospice social worker, placed a photo of him taken at the beach on his bedside table. “I wanted to humanize him so the staff would see him as a whole person, not just as a hospice patient,” she says. During her daily visits, Gemson and her husband sang songs together, spent time in the hospice's roof garden, and attended concerts at the facility. Less than a month after he entered hospice, Greene died peacefully on November 17. “Moving him to hospice when I did was without question the right decision,” says Gemson.
Unlike Gemson, Gant Redmon opted for hospice care for his wife, Frances, at their home in Alexandria, VA. Frances was diagnosed with dementia in 2021, and by the time she entered hospice at the end of February this year, she had stopped speaking and could no longer move around independently or feed herself. “I knew she would want to die at home,” says Redmon, who put together a full caregiving team for around-the-clock attention. As the weeks progressed, Frances couldn't get out of bed and stopped eating. Redmon and the caregivers had to turn her frequently to prevent bedsores and pressure injuries. She died on March 11, with Redmon and their son at her side. She was 86. “Hospice staff provided emotional support every step of the way, which I'm grateful for,” Redmon says.
Hospice Eligibility
Every year, about 1.5 million Americans enter hospice—medical care for people whose life expectancy is six months or less—according to the U.S. Centers for Disease Control and Prevention (CDC). In 2021, more than 50 percent of women and 40 percent of men on Medicare died in hospice, according to a 2023 report by the National Hospice and Palliative Care Organization.
In hospice, “the focus shifts from treating the disease to managing symptoms and maintaining quality of life,” says James Gordon, MD, FAAN, a neurologist and retired hospice and palliative care expert at the University of Washington in Seattle. “Patients and their families often get to a point where they ask themselves if the cure is causing more suffering than it's worth,” Dr. Gordon says. “If they are close to the end of life, it's often time for hospice.”
Patients are eligible for hospice if they are in the last six months of life and they or their families have elected comfort-focused care rather than life-prolonging treatment, says Jessica Besbris, MD, a neurologist and hospice and palliative care specialist at Cedars Sinai Hospital in Los Angeles. In addition to managing symptoms or the side effects of treatment for the condition, hospice care provides emotional, psychological, and spiritual support.
“Many patients are confused about the differences between hospice and palliative care,” Dr. Besbris says. “Neuropalliative care focuses on quality of life for people with serious neurologic illnesses,” she explains. “In palliative care, patients need not stop treatment that may help cure their disease. Palliative care can be provided with more aggressive curative therapy,” says Dr. Besbris. Hospice care provides comfort rather than curative measures at the end of life, she adds.
Read More: What is the Difference Between Hospice and Palliative Care?
The first hospice was established in 1967 in the United Kingdom. The idea was introduced in the United States in the mid-1970s at Connecticut Hospice in Branford. “The goal was to demedicalize death and to focus on quality of life at the end for both patients and families,” says Farrah Daly, MD, MBA, a neuropalliative specialist in Leesburg, VA, and founder of EvenBeam Neuropalliative Care. Before hospice, patients often died in hospital rooms or in intensive care units. Many families were unprepared for the dying process and often did not know what to expect.
Yet hospice doesn't necessarily mean giving up on life entirely, says Jerome Kurent, MD, MPH, FAAN, a neurologist at the Medical University of South Carolina in Charleston who has specialized in hospice and palliative care. “Sometimes we see an improvement in health and well-being because of the extra layers of attention and care provided,” he says.
Hospice care is covered by Medicare through the Medicare Hospice Benefit, according to the Hospice Foundation of America. It's also covered through private insurance and Medicaid. “Patients and their families have a lot of worries toward the end of life,” says Benzi Kluger, MD, FAAN, director of the Palliative Care Research Center and the Neurology Supportive and Palliative Care Service at the University of Rochester Medical Center in New York. “Concerns about paying for hospice shouldn't be one of them.”
What to Expect
An entire medical team comes together to administer hospice care, which can happen at home, in a facility like a nursing home or hospital, or in a separate hospice center, says Dr. Kurent. Doctors, who are board-certified in hospice and palliative medicine and work closely with patients' personal physicians or neurologists, usually focus on easing pain and managing symptoms while also providing support to the families. Nurses visit daily or several times a week to monitor patients. Home health care aides provide personal care like bathing and dressing, and they may even do light housekeeping. Chaplains offer spiritual counseling for patients and their families. Social workers lend emotional support and can identify community services and resources. Hospice workers also provide “anticipatory guidance” to patients and families so they know what to expect as the disease progresses, says Maisha T. Robinson, MD, FAAN, a neuropalliative care specialist at Mayo Clinic in Jacksonville, FL. Counseling for the family when the end of life is near is also available from the hospice team, Dr. Robinson says. And bereavement counselors are available for counseling and support for up to 13 months after hospice.
In addition, hospice usually provides durable medical equipment, like hospital beds; medical supplies like bandages and catheters; drugs for addressing pain and other symptoms; and short-term inpatient care when needed. “If patients develop uncontrollable seizures, for example, they may be admitted to the hospital briefly to try to stabilize them,” says Dr. Besbris.
Many people's image of hospice is of a patient in a hospital bed with a morphine drip running, says Dr. Robinson. “That's not usually the case for patients with neurologic disease because the symptoms at the end of life rarely include severe pain,” she notes. The idea that their loved ones will be overmedicated with opioids is one reason some families don't opt for hospice, Dr. Robinson says.
Caregivers who use at-home hospice are eligible for respite care, meaning their loved ones can stay in a hospital or nursing home (approved by insurance) while they get a break. The length of time, and how often, depends on patients' insurance coverage.
Sara Wind was diagnosed with relapsing-remitting multiple sclerosis in 2014. By 2020, when she was 44, she was incontinent, bedridden, and living in a nursing home in Grand Rapids, MI. Four years later, she made the decision to enter hospice. “She said, ‘I'm tired, and I don't want to keep fighting—I'm ready to let go,’” recalls her mother, Ginny Hartger. This past January, she moved back to her house to be with her husband and four adult children.
The hospice center sent visiting nurses or home health aides several times a week to assist with bathing and tending to bedsores. Wind's husband and children took care of her the rest of the time. “They arranged their work and family schedules around her to ensure that she wasn't alone for even a single minute,” says Hartger. Toward the end of Wind's life, in late February and early March, hospice services sent someone to the home every day to check in. “They were an excellent resource during that time, because they explained the dying process to us and told us what to look for,” Hartger says. Wind died on March 12 with two of her children by her side. Hartger came as soon as she heard the news and stayed with Wind's family until hospice arrived later that morning to take her body. “I was grateful for that extra time with her,” she says.
Looking back, Hartger says she doesn't regret anything about hospice, including when her daughter started and her decision to do it at home. “My advice to anyone facing end of life is to not wait, to enter hospice as soon as you're ready for it,” she says. “It doesn't hasten death. It makes your remaining life more comfortable and enjoyable.” Wind's family hosted a low-key party with a taco bar on Wind's first weekend home, for example. “She couldn't participate much in the conversation because of weak speech, but they placed her bed in the middle of the family room so she could see everyone coming and going,” says Hartger.
Hospice providers are available 24 hours a day, seven days a week, if there is an emergency or if patients or caregivers have concerns. But the bulk of day-to-day care falls to family members, which can be stressful. When Mary Louise, 68, began hospice for her 70-year-old husband, Robert, in December 2023, she quickly realized that she needed more support than hospice services could offer. Robert had been diagnosed with amyotrophic lateral sclerosis (ALS) a year earlier. The disease progressed quickly: In April, he started a feeding tube, and seven months later he was hospitalized and placed on a ventilator. When he came back to their Washington, D.C., home for hospice, he still had the feeding tube and remained on the ventilator. “Our home health aide was supposed to come for only an hour once a day, but when she saw how much help I needed, she increased it to two hours a day,” Louise says. Because the home health aide wasn't allowed to assist with Robert's noninvasive ventilator or cough-assist machine, Louise had to do it herself or call and make a special request for a nurse to come and help her.
As her husband's condition deteriorated, Louise required more help. “I was surprised at how little insurance actually covered when it came to in-home care,” she says. Louise ended up hiring and paying for private nurses so she could sleep and a private nurse one afternoon a week so she could have time for herself. Neighbors and her son also came by frequently to pitch in and do errands for her, like grocery shopping. “It was a very hard, challenging time,” says Louise, whose husband died in December. “I was always exhausted, from both taking care of Bob and advocating for him.”
“Hospice at home is not necessarily the right choice for every patient,” says Dr. Besbris. “Some patients don't want their loved ones to have memories of them dying at home. Others may not have access to regular caregivers, or their needs exceed what their families can provide.” In these cases, she says, patients may be better off at a facility. “It allows family to visit and just be the patient's spouse or child, without the pressure of also being the caregiver,” she says.
Regardless of where patients receive hospice care, they and their families should let staff know what they need, advises Gemson. “When I worked in a hospice, I would ask patients what would help them during this time,” she says. “One wanted me to read poetry to them. Another wanted crayons to draw pictures. Those aren't things I would have necessarily thought of myself.” Gemson often requested volunteers who came by to sing to her husband. “Tim was sharp up until the moment he died,” she says. “I wanted to make sure everyone around him treated him with respect.”
Post-Hospice Support
Hospice personnel don't provide care only while patients are alive. They assist in the days and months after death as well, says Dr. Daly. A hospice clinician will arrive to pronounce a patient's death, remove any ports or tubes, bathe the body, and dress it in clean clothing before it goes to a funeral home.
Hartger got to her daughter's house 20 minutes after Wind had taken her last breath. “When we called hospice, they suggested we wait an hour until 8 a.m., when her regular nurse would be on duty, so we could have some time alone with Sara,” says Hartger. “It was the right suggestion. The whole family—my husband and I, Sara's husband, and her kids—were all able to process her death together.” When the nurse arrived, Hartger and her granddaughter bathed and dressed Wind, then stayed with her until the funeral home came to pick up her body.
Hartger is also grateful that the social worker from hospice has called several times since Wind's death to check in. “We have a strong support system through our family and church, but it's comforting to know that we have hospice to turn to as well,” she says. “When I look back at Sara's last months of life, my only regret about hospice is that we didn't do it sooner. It was the most compassionate and gracious way for my daughter to spend the last weeks of her life.”
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