Oct. 4, 2011 -- It's a conversation that many of us don't want to have. Maybe we are superstitious, feel that we are young and invincible, or maybe we just can't find the right time to discuss our end-of-life wishes.
But a new study suggests that telling the people in your life about the type of care you do and don't want in the event you become incapacitated can help shape your overall experience at the end of life. Such advance directives also can help reduce health care costs.
The study is published in The Journal of the American Medical Association.
"It's really important to talk to your family and friends about what you want and to prepare a living will, as it can help ensure that your end-of-life care is consistent with your preferences," says study researcher Lauren Hersch Nicholas, PhD. She is a health economist at the University of Michigan in Ann Arbor.
Nicholas is 31 and has already had this conversation with her family. "Talking about it when it is not imminent is really helpful so you do not fear something that is coming at you right away," she says.
This should also be an ongoing conversation because preferences may change, she says.
Researchers analyzed information on 3,302 people with Medicare who died between 1998 and 2007, including their health care costs and treatments during the last six months of their lives. As part of the study, the relatives of the deceased were asked about any advance directives.
Advance Directives Eliminate Guess Work
People who had advance directives were less likely to die in a hospital and more likely to receive palliative and hospice care. Palliative care, which focuses on pain and symptom management, can be provided at any point during a life-threatening illness.
Hospice care, which can take place in settings such as a nursing home, assisted-living facility, or your own home, is often offered in the last six months of life.
There were no differences in rates of life-sustaining procedures seen among people with or without advance directives, the study showed.
"Physicians were making efforts to provide feeding tubes or resuscitation when it could help, but they did make a more rapid recognition of when these measures were no longer effective among people who had a living will," Nicholas says.
"You don't get less treatment if you have an advance directive," she says. "An advance directive can make the difference between dying in a hospital and dying in a comfort care setting such as your own home."
Curbing Health Care Costs
In regions of the U.S. where end-of-life spending is greatest, advance directives helped reduce costs. Cost of caring for people with living wills who stated that they did not want aggressive measures taken to keep them alive was $33,933.
By comparison, if a person did not have an advance directive, the cost of care during their last six months was $39, 8517. This difference was only seen in "high-spending" regions.
"At large academic medical centers, there are lots of specialists and there is a treatment-speeding train, and the doctors don't always engage patients and family in the treatment decisions," says Nancy D. Zionts, MBA. She is chief program officer of Jewish Healthcare Foundation in Pittsburgh, a nonprofit group that focuses on end-of-life and other health care issues.
"The conversation that takes place should be about where you want to die, whether or not you want additional treatments, and/or whether they want to be taken to the hospital if there is a change in their terminal condition," she says. "You can say 'I want everything' as easily as 'I want less,'" she says.
Other issues that should be addressed include pain management and what friends or family members you do, or don't, want around, she says.
It's also important that doctors are on board, she says. Some states are adopting a program called Polst -- Physician Orders for Life-Sustaining Treatment -- in which doctors sign off on advance directives.
"These will be game changers," she says.
Porter Storey, MD, is the executive vice president of the American Academy of Hospice and Palliative Medicine. He says that hospices and palliative care services are responsible for the differences in the end-of-life experience -- not the advance directive, per se.
"People who don't want to die on a ventilator and would rather spend their last days at home are using hospice and palliative care services," he says. "Part of a palliative care team's job is getting the advance directive done and making sure you get the services that line up with what you want, which may be hospice care," he says. Storey practices palliative care in Lafayatte, Colo.