Most people would prefer to die at home, surrounded by loved ones.
However, often their lives end in a hospital.
According to a 2014 report by the Institutes of Medicine (IOM), people nearing the end of life often experience multiple transitions between healthcare settings and preventable hospitalizations.
These experiences can fragment care delivery and create challenges for patients and families.
A new study out of Japan suggests that choosing to die at home actually helps terminal cancer patients live longer.
A research team examined 2,069 patients. There were 1,582 patients that received hospital-based palliative care and 487 who received home-based palliative care.
Those who chose to receive in-home care lived longer than those who chose to stay in a hospital. The analysis adjusted for outlying factors, such as demographics and clinical characteristics.
Quality vs. quantity
The results, published Monday in the journal Cancer, expand on the conversation around a shift in the U.S. medical system and the quality of life during a person’s final days.
Dr. Jun Hamano, an assistant professor at the University of Tsukuba, said patients and their families tend to worry that home care won’t provide the quality of care that a hospital will. However, spending the last days or months at home doesn’t necessarily mean life would be shortened.
"Patients, families, and clinicians should be reassured that good home hospice care does not shorten patient life, and even may achieve longer survival," Hamano said in a press release.
The research team says the findings suggest oncologists shouldn’t hesitate to consider home-based palliative care for patients simply because less medical treatment may be provided.
Palliative care the preferred approach
The IOM report, Dying in America, found that there’s a shift in how people choose to spend their final days.
Most advance care directives are focused on alleviating pain and suffering.
Demand for family caregiving is increasing. This is due partly to aging Baby Boomers and a focus on quality of life over quantity of life.
The role of family caregivers is also changing. Personal care and household tasks have expanded to include medical and nursing tasks, such as ensuring medication is taken.
Earlier this month, The Washington Post reported that while medical advances can extend a person’s life, many of those measures — including CPR, dialysis, and feeding tubes — are often painful and don’t actually prolong life.
These measures often don’t help the underlying problem so that the patient’s symptoms may remain. One survey the Post article mentioned found that 85 percent of people say they would turn down dialysis should they suffer a brain injury.
Planning in advance
One of the major problems in allowing terminal patients to direct their own end-of-life-care is that they may be unable to make their own decisions.
“The majority of these patients will receive acute hospital care from physicians who do not know them,” the IOM report states. “Therefore, advance care planning is essential to ensure that patients receive care reflecting their values, goals, and preferences.”
While slowly gaining traction, few people have advance care directives, such as “do not resuscitate” orders.
According to a 2014 report appearing in the American Journal of Preventive Medicine, only 26 percent of nearly 8,000 people surveyed had advance care directives. The most common reason for not having one was lack of awareness.
Those who had advance care directives were more likely to report having a chronic disease and a regular source of care. This group tended to be older adults that had higher levels of education and incomes. Researchers also noted that advance care directives were less frequent among nonwhite respondents.
In a blog, Lee Goldberg, director of the Pew Charitable Trust’s improving end-of-life care project, stated that polls show people would prefer to die at home. However, 70 percent die in hospitals, nursing homes, or long-term care facilities.
“The care Americans say they want near the end of life differs significantly from the care they often receive,” Goldberg wrote.
The Pew group has requested the Centers for Medicare and Medicaid services include palliative and end-of-life care in its Quality Measure Development Plan.