There are clear steps to making informed decisions about how you or your loved ones want to be treated in the event of life-threatening illnesses or accidents. Professionals who work with elderly people approaching the end of their lives say that regular discussions with caregivers, friends, and family must occur. Unless people are heard, their wishes can't be understood and shared with others. Most importantly, everyone around the individual needs to remember that it is her wishes, not theirs, that should drive decisions.

Sarah Broughton, Fred Poorpough, and Lou Wright are the palliative care team at the Richmond, Va. PACE program. One of more than 70 such outlets around the country, PACE stands for Programs of All-Inclusive Care for the Elderly. Serving older people who are eligible to move into nursing homes, PACE programs use Medicaid and Medicare funds to instead allow these people to remain in their homes while using PACE as the provider of their medical and many age-related needs.

Most are transported daily by PACE vehicles to a local center, where they are provided with activities and access to physicians, therapists, and other social-service professionals. The program reaches out into participants' homes as well, making sure home-based care is provided and that family members are informed and involved in the effort to make sure people experience the best possible quality of life.

At the Richmond PACE center, Broughton is a social worker, Poorpough is a chaplain, and Wright is medical director with extensive experience in geriatric medicine. As a team, they emphasize, they're able to see the full range of needs of PACE participants and they can gain more complete insights into those needs than any one of them could alone.

End of life planning begins even before someone voluntarily enrolls in the PACE program. "Our goal is to have people with us until the end of their life," says Craig Connors, who heads PACE efforts for two Virginia locations run by Riverside Health System in Newport News. A typical PACE participant spends two or three years in the program, which includes hospice care. "As part of the intake process, people are asked if they have an advance directive," Broughton says. More than 90 percent of local participants do have such directives in place.

Creating such a document requires family discussions and needs to be done when the PACE participant is mentally capable of understanding the issues and deciding what's best for them. Having such directives in place before a person faces actual end of life care decisions can be a tremendous relief for family members. Not having such plans in place can inflict a huge emotional toll on everyone involved, as well as causing physical distress to the dying person. "We can't honor your wishes if we don't know what they are," Broughton says.

From a medical standpoint, Wright says, he often sees end of life conditions approaching through shifts in people's attitudes about their own futures. This often happens as they become frail or hobbled by chronic health problems. And it shows up, he notes, when he poses a standard question about where they see themselves in one year. When the answer is, "I don't," it often means that the PACE team must shift its treatment goals from longevity to palliative care.

Poorpough says he also sees these shifts from a spiritual perspective. And it is spirituality, not specific religious beliefs, that dominates his work with PACE participants. As people contemplate their death, attitudes toward the value of life become very important. When people measure their accomplishments, non-material yardsticks often emerge as dominant gauges of a life's meaning.

Throughout an end of life process, Wright says, maintaining the autonomy of the individual and treating them with dignity should be top goals. "The hardest part in this whole spectrum of care is autonomy," he says. "It's what the individual wants [but] a physician who is not trained in hospice and end of life care just can't deal with it."

"The end of life process should be based on informed decisions," Broughton says. "And those decisions are not ours" but the person facing death. Wright says, "Many elders are bullied into what's done to them."

PACE uses a program called Five Wishes to help its palliative care team work with PACE participants. Five Wishes, developed by Aging with Dignity in Tallahassee, Fla., uses a five-point form to explain end-of-life options. Most states will accept a completed and signed Five Wishes form as a legally enforceable living will.

The program's five points ask people their wish for:

1) The person I want to make care decisions for me when I can't.
2) The kind of medical treatment I want or don't want.
3) How comfortable I want to be.
4) How I want people to treat me.
5) What I want my loved ones to know.

The Five Wishes form translates the legal aspects of end of life decisions into real-world issues and decisions that can more easily be understood by people and their families. It also provides PACE professionals with a helpful checklist and set of discussion points to make sure people understand the decisions that will govern medical care in their final days.


Published: June 7, 2010