Hospice Care and End of Life at Home
Coneigh Sea cared for her husband while he was a hospice patient in their Murfreesboro, Tennessee home. Sea managed all of his medications and his bodily fluids, mostly by herself. Although her husband died in 1993, Sea still remembers the burden that is placed on her. It’s a burden she says she “lovingly did.”
But, Sea, a social worker, has already told her adult children that she does not want them to use home hospice services for her. She jokingly told her children that if they do not handle her death differently, she will come back to haunt them.
Sea and other families are looking at hospice services from a different point of view since they were the ones providing most of the end-of-life care for their loved ones.
Hospice is a type of health care that focuses on care, comfort, and quality of life for a person who has been given fewer than six months to live or who chooses not to undergo treatment for a serious illness to prolong life. The services can be provided in a private home, a nursing home, an assisted living facility, a hospital, or a hospice facility.
Besides hospice, palliative care is another form of care for people with a serious illness. Palliative care can begin at the same time as the treatments for the disease or at the end of life. Hospice care begins after treatment for the illness has stopped and the patient is not expected to survive.
Hospice agencies provide equipment, such as a hospital bed or wheelchair, and prescription medication for pain or anxiety. Medicare pays for certain hospice benefits including a home health aide or a nurse. However, Medicare data show that hospice caregivers only stay in the home for an average of 30 minutes per day.
In some cases, people like John McCasland, hire private caregivers to help them provide personal one-on-one care for their loved ones. McCasland, who lives in Nashville, Tennessee, hired a caregiver to help him care for Jean, his wife of nearly 50 years who had dementia. By having a caregiver to help him for several hours, McCasland said he was able to get some rest. McCasland said he used his and his wife’s retirement account to pay for the caregiver.
Without outside help, family members, particularly adult children who care for their parents, cannot avoid handling embarrassing personal care tasks. Joy Johnston, for instance, felt uncomfortable giving her mother suppositories for constipation, which commonly occurs with people who are dying.
“That was the lowest point,” recalled Johnson, who moved from Atlanta to New Mexico to take care of her dying mother. “And I’m sure it was the lowest point for my mother as well. And it didn’t work.”
Johnson, who was the only child, does not regret that her mother died at home in hospice care. However, dying at home she says is “not all it’s cracked up to be.” In an essay about her caregiving experience, Johnson, a caregiver advocate, and a writer wrote that the home hospice experience for family caregivers “is not always as rosy as it is portrayed. It can be a gut-wrenching, soul-draining nightmare that no amount of therapy will ever be able to rectify.”
More Medicare Recipients Opt For Hospice Care
Medicare has been covering home hospice services since the mid-1990s. Since that time, the federal health insurer has been covering more hospice benefits and more diagnoses as Medicare recipients choose home hospice services.
According to a report from the National Hospice and Palliative Care Organization (NHPCO), Medicare paid hospice providers $19.2 billion in 2018. In addition, 1.55 million Medicare beneficiaries received hospice care in 2018, a 4 percent increase over the previous year. The report also found that 50.7 percent of Medicare recipients were receiving hospice services at the time of their death.
Since 2000, Medicare beneficiaries have been more likely to die in their homes or in hospice inpatient units than in hospitals, according to a study published in JAMA: The Journal of the American Medical Association.
The study used data from the Centers for Medicare & Medicaid Services. From that data, researchers compared end-of-life outcomes for Medicare fee-for-service recipients from 2009 to 2015, and Medicare Advantage recipients from 2011 to 2015. The average age of both groups was 82 years old.
For Medicare fee-for-service recipients, death in hospitals decreased, deaths in nursing homes remained steady, but death in hospice care jumped from 21.6 percent in 2000 to 50.4 percent in 2015. Among Medicare Advantage recipients, more than 50 percent of recipients entered hospice care in both 2011 and 2015, in both years, 8 percent had services for more than three days.
The final days of death were burdensome for patients, particularly fee-for-service recipients who had multiple hospitalizations for infections such as urinary tract infection, pneumonia, and dehydration.
These last days of life are also intense for the family members, said Dr. Joan M. Teno, a physician and leading hospice researcher at Oregon Health and Science University. Teno, who co-authored the study, has first-hand knowledge about hospice care.
Teno said her father was placed in a hospice residence, which in some ways, is similar to a nursing home with private rooms. Patients receive around-the-clock medical care and family and friends are allowed to visit.
While a hospice residence is a “godsend,” Medicare will not pay higher rates for such a place unless patients are in “bad shape,” Teno said.
Studies: People Prefer To Die At Home
Just as studies show that people 65 years old and older want to age in place in their own homes, studies have also found that older adults want to die at home. In a survey conducted by the Kaiser Family Foundation, 49 percent of respondents rated the U.S. health care system “fair” or “poor” when it comes to end-of-life medical care. If given the choice, 71 percent of respondents said they would prefer to die at home, and only 9 percent said they would prefer to die in a hospital.
Additionally, a study published in the New England Journal of Medicine found that “the home has surpassed the hospital as the most commonplace of death in the United States for the first time since the early 20th century.”
Because of this trend, more information is needed about patients’ experience of dying at home to “develop policies and services that ensure high-quality, end-of-life care,” according to Sarah H. Cross, the study’s co-author who is also a researcher at Duke University Sanford School of Public Policy.
It comes as no surprise to Dr. Parul Goyal, a palliative care physician with Vanderbilt Health, that people opt for home hospice care because of the “peaceful environment” they are in during their last days. But, Goyal says, “it may not be comfortable for family members watching them taking their last breath.”