Sacramento community speaks and takes action
ECHO aims to present humane dying options
Defining futile care and determining absolutes about when it is morally acceptable to withhold aggressive treatment is something many communities and most hospitals have struggled to address. Now several Northern California ethics committees’ questions about medical futility have led to a communitywide effort to secure "humane options" for dying patients. The program is called ECHO (Extreme Care, Humane Options).
"We believe that what we have accomplished is a first step," says Marjorie Ginsberg, MPH, executive director. "We have been talking to ethics committee members for 10 years about changing the course of dying. This will not change the culture of death overnight, but it will get us started in the right direction," she says.
An action plan
The final report of the group is "not a white paper but rather a feasible action plan that local health care providers can adopt and implement," Ginsberg says. It includes five main goals:
• Develop treatment options that are responsive to the needs of dying or irreversibly ill patients and their families.
• Identify patients at risk of receiving inappropriate or unwanted medical treatments.
• Improve communication among patients, families, physicians, and other health care team members to foster informed, timely, and mutually satisfactory treatment decisions.
• Assure that patients and surrogates are the primary decision makers in choosing appropriate treatment options.
• Support effective processes for preventing and resolving conflict regarding treatment decisions that respect patient values and the professional integrity of health care providers.
How the ECHO project will incite change is up to individual health care providers in the Sacramento region. It is not a "cookie cutter" method to assure a "good death," Ginsberg cautions.
One physician who participated in the process says its success will rest on the fact that each health care provider will want to offer the same standard of care. "Physicians really don’t want to continue the futile care of the past," says Janet O’Brien, MD, a physician in practice at Woodland (CA) Healthcare. She recently presented the outline of the ECHO goals to the hospital’s medical staff. "Hopefully, doctors will gain more confidence in using their best clinical judgment and in doing what they feel is right for each patient," she says.
Comfort care
O’Brien suggests that one incentive for physicians to implement a comfort care plan is to quantify how it actually can improve the care of their patients.
In at least six Catholic hospitals in the Sacramento area, the implementation process is well on its way. The Mercy Healthcare System, which includes six hospitals, a hospice, and home health program, has initiated the development of a supportive care pathway, says Lori Dangberg, director of advocacy for the system and an ECHO participant.
The plan will be completed by mid-summer and will include specific action steps following the identification of a patient desiring comfort care. (For information on when comfort care must be offered and when it is considered most appropriate, see story, at right.) These steps include a list of physician orders to follow, a hospice referral, a change in the physical environment of the room, and a delineation of role responsibilities for the care team.
Defining a process
ECHO project leaders sought to ensure that the public was at the table from the beginning and that all health care providers were represented. The concentrated involvement of the local community included 92 public discussion groups, a focus group with families who had recently made difficult end-of-life decisions, and a random telephone survey of 1,022 residents.
Another 1,000 residents from four counties including Sacramento participated in the two-hour structured discussions beginning in 1994. These discussions centered on the values and priorities most critical when end-of-life decisions are being made.
At the same time, groups of health care professionals from various settings met to discuss clinical issues surrounding terminal illness. Subcommittees on adult and pediatric intensive care, as well as long-term care, met for nearly a year. A physician survey was conducted in nine regional hospitals to identify educational needs and encourage changes in practice.
O’Brien says the community will pool its resources to develop educational programs for health care professionals. She urges other ethics committee members to invite public discussion of end-of-life issues. "There were a lot of revelations gained from listening to the community members. It is really important for physicians to hear these sentiments because, in most cases, what we assume patients want and think is wrong."
Despite its support, ECHO members say the recommendations are only a beginning. "We have to challenge ourselves to recognize inherent problems like poor communication," says Michael Tschev, LCSW, director of Sutter Hospice in Sacramento. "None of us can afford to say that we know all the answers," he contends.
Tschev predicts that hospice care programs will serve as a resource for other health care providers who will be developing supportive care teams, comfort care pathways, and bereavement programs.
"Our biggest opportunity will be to learn from each other," Tschev says. "A great deal of cultural change has to occur, and it will take time and commitment."
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