ARTICLE IN BRIEF
In an analysis of sites of death in 2000, 2005, and 2009, investigators reported that only 24 percent of people over 65 died at home. That's an increase from 15 percent in 1989 and parallels a decreased number of deaths in acute care hospitals. But experts say the statistics would be better if clinicians involved patients with chronic neurodegenerative disease and their families early on in discussions about planning for hospice care.
When James Gordon, MD, gives lectures about end-of-life care, he asks his audiences what their idea of the “best death” would be. Overwhelmingly, they say they want to die in their sleep or comfortably at home.
Then he asks them to tell him the biggest obstacle to having their wish.
“Calling 9-1-1,” said Dr. Gordon, medical director of palliative and supportive care service at Northwest Hospital and Medical Center in Seattle.
Nationally, about 70 percent of people want to die at home, according to a 2005 study from the Centers for Disease Control and Prevention. But about half die in a hospital.
A Feb. 6 study in the Journal of the American Medical Association that looked at the site of death found that only 24 percent of people over 65 died at home. That's an increase from 15 percent in 1989 and parallels a decreased number of deaths in acute care hospitals. But it's not close to meeting most people's wishes for end-of-life care.
“The good news is that people are using hospice more, but the bad news is that they aren't using hospice early,” said Dr. Gordon, who was not involved in the study. “There's nothing about that that's surprising, but in my estimation, the issue of transitions — helping people make the transitions from very aggressive cure-based care to hospice care — is one of the most important issues.”
Study author Joan M. Teno, MD, a professor of community health and medicine and associate director of the Center for Gerontology and Health Care Research at the Alpert Medical School of Brown University, said that part of the problem is communication, particularly with patients with chronic long-term neurological illnesses such as dementia. That particular patient population has an increased pattern of health care transitions and intensive care unit utilization, she said.
“Cynically, you could think, well what do you expect? Medicare fee-for-service pays more for people to be hospitalized,” Dr. Teno said. “We need to pay to provide quality of life, and use the best resources we have to take care of this population.”
STUDY METHODS, FINDINGS
The study compared sites of death from random samples in 2000, 2005, and 2009 — 270 and 202; 291 and 819; and 286 and 282, respectively. The patients were all over 66 and were diagnosed with cancer, chronic obstructive pulmonary disease (COPD), or dementia in the last 180 days of life.
One of the biggest positive changes was the use of hospice care at the time of death, up to 42 percent in 2009 from 21 percent in 2000.
There were several reasons for the disparity. Medicare requires that a patient be within the last six months of their life to be eligible for hospice. And many hospitalizations for patients with Alzheimer's disease, Parkinson's disease, and COPD may be due to unexpected illness, the study authors wrote.
Doctors said that even when wishes are clear, sometimes a family member or the patient will panic and ask for emergency care. The hope is that by bringing in hospice care early on, it will not get to that point.
CONVERSATIONS DIFFICULT, NECESSARY
All of the physicians interviewed said that talking to patients about palliative care and hospice care was both necessary and difficult. And they noted that there was no black and white script to follow, no easy way to have the discussion.
Dr. Gordon said that there is a cultural shift happening, albeit a slow one, that's more open to palliative and hospice care.
“There's always the tendency toward the prolongation of life, and we're not well trained at all for treating someone for comfort when someone appears to be dying and dying uncomfortably. We have difficulty accepting that sometimes the most compassionate thing we can do is to accept the notion that someone is dying. It's the hardest thing for any of us to accept.”
J. Randall Curtis, MD, who holds a master's degree in public health and is associate professor of medicine at the University of Washington, said that despite efforts to educate the public, nurses, and clinicians about end-of-life care, aggressive treatment continues to drive a lot of medical decision-making.
Just looking at the data, he said, it's hard to know which of the ICU admissions are appropriate and which are not.
He said when he went to medical school, the class watched a 40-minute video about how to give bad news and that was it. He learned by watching other doctors during his residency.
“Now, medical schools are better about it, they're beginning to take this on and teach communication,” Dr. Curtis said. “From our research, you can't teach people how to do this in a lecture format; it's a skill like driving. You've got to practice and get feedback on that practice.”
Encouraging doctors to have an end-of-life conversation and addressing what it means to have hospice and palliative care is a large challenge, Dr. Teno said. But she suggested that clinicians consider having a hospice consultant come talk to the patient.
“That way if the neurologist doesn't have time, a hospice nurse could come in and explain what they provide and talk to the family and answer their questions,” Dr. Teno said. “Yes, everyone is super busy but it's a benefit to people on Medicare to have a consultation done with a hospice provider.”
Dr. Curtis said neurologists have a particularly challenging time with these discussions because of the prognosis of many of the diseases in their practice.
Physicians are very often focused just on the patient, but it's important to bring in the family — whomever is defined by the patient as their family — and make sure they're involved.
Bringing up the issue earlier on, when the patient is able to participate in the discussion and the disease itself does not seem so threatening, is helpful. It is not helpful for the patient or the family, he said, to wait until the patient is too sick to speak for him or herself.
“Family members are a really important piece of this discussion when the patient is talking about values and goals in their quality of life. That way they can be prepared and the decisions are clearer,” said Dr. Curtis.