EOL care improvements help patients, caregivers
Family conferences win all-around support
Advance directives and do not resuscitate (DNR) orders are some of the tools available to help patients, families — and ourselves, as providers — through difficult end-of-life health care decisions. To request a DNR order is not a casual step for patients or for their families. They expect their providers to take it just as seriously. However, many facilities have poorly articulated policies for clinicians and do little to enlighten patients about the choices at the end of life (EOL). Consequently, some patients endure unwanted resuscitation and nonbeneficial care.
Common misunderstandings that occur among patients and families include:
-They think living wills and medical durable powers of attorney include automatic protection against unwanted resuscitation either by cardiopulmonary resuscitation or mechanical ventilation.
-They don’t realize that DNR orders written outside of the hospital are invalid at the hospital unless somebody presents the properly executed form to staff on the inpatient unit. (Laws regarding these types of orders vary from state to state.)
Misunderstandings like those described were among the issues facing the palliative care task force at Saint John’s Health Center in Santa Monica, CA. The facility’s bioethics program coordinator, Gretchen A. Case, MPH, says, "We are still learning how to provide palliative care in this country. But instead of pointing fingers at who is to blame for how bad end-of-life care is, we must develop tools to change the delivery process."
Chart reviews and focus groups defined the problem as it existed at Saint John’s. While the task force developed a process that other facilities can replicate or adapt, Case warns against pushing for rapid change on EOL care issues. Due to the emotional charge, it’s best to involve providers at each stage, all the way from planning through implementing alterations in the way they care for the terminally ill. (For more on quality improvements in EOL care nationally, see QI/TQM, March 1999, cover story.)
In 1995, the palliative care task force assessed Saint John’s practices of caring for the terminally ill. Participants included staff from bioethics, intensive care, nursing, oncology, pharmacy, quality improvement, and social work, as well as physicians. The task force took these steps:
Stage 1
-Expression of long-felt frustrations about the state of care for terminal patients. Hospital staff and physicians alike joined the chorus. While it took time, airing of frustration was critical to the success of the project.
-Identification of improvement targets. DNR policies came up repeatedly as did communication with staff and family, pain and symptom management, policies for PCA (patient-controlled analgesia) pumps, advance directives, and nonbeneficial care.
Stage 2
-Design of new DNR order form. Using a form from another health care system, the task force made the first round of adaptations.
-Refinement of DNR order form. Case was surprised at the lively interest in the form demonstrated by revision notes on copies posted in the nursing and physician lounges and presented to medical staff committees. Typical feedback was, "At last you’ve given us a form we can use." All concerns were addressed, and the final version was drafted.
Like at other institutions, DNR instructions at Saint John’s are physician orders. However, Saint John’s took them a step further than most. They are now written on the separate "Order Set-DNR" form, which includes the plan of care. It goes into the patient’s chart; its blue tab and extra half-inch width make it easy for all to see. "Do Not Thin" instructions in the right margin alert the clerical staff to keep it in the chart.
A "Do Not Resuscitate Status" sticker on the front of the chart alerts providers to the DNR order within. "The new policy facilitates planning of care for the patient and facilitates communication between the providers and families," Case notes. (See copy of the "Do Not Resuscitate Status" sticker, below.)
Other products from the EOL task force include:
-Standard procedures to back up the DNR policy.
-Protocol for a patient care conference (PCC) for complicated cases. Attending the conferences are the family and hospital staff, as well as attending and consulting physicians.
-Physician’s guidelines on the use of narcotics for the terminally ill.
-Recruitment of full-time staff physician specialists in pain management and palliative care.
The palliative care task force’s work created ways to close the communications and knowledge gaps that make EOL care more difficult than it is anyway through these steps:
-New DNR orders are flexible, lasting either for a specified duration or throughout the hospital stay.
-PCCs, which run about 45 minutes, bring families and providers together to discuss the patient’s wishes regarding treatment as life ends, including pain management and aggressiveness of care. Doctors’ anxieties about litigation usually diminish when they’ve talked over the case with the family.
Designed around the physician’s schedule, conferences go like this:
1. Case review (about 20 minutes). Providers establish goals for the family meeting. Participants include representatives of the palliative care task force, bioethics committee, social work, attending and consulting physicians, case manager, and nurse on duty.
2. Family meeting (about 20 to 25 minutes). At this point, some of the clinical staff leave so the family will not be intimidated by a roomful of white coats. Clinicians explain the medical status and suggest benchmarks that will be used to determine the level of future care.
Carry an administrator in your pocket’
The palliative care task force’s goal was to create resources for the medical staff, freeing them from the tendency to base care decisions on litigation fears. But without medical staff input at each stage, Case notes, nonsupporters could have ignored the whole thing. "We didn’t want them saying, Have a conference or do what you will, my care won’t change.’"
Fortunately, Saint John’s executive medical director, Charles Pietrafesa, MD, was willing to enforce the facility’s medical staff bylaws requiring doctors to attend conferences and meetings. Case would never suggest applying administrative mandates with a heavy hand, but when you’re in a pinch, they help. Her rule of thumb is this: "Talk softly and carry an administrator in your pocket.
"We knew we were successful," she adds, "when our biggest opponent [of PCCs] came to us one day and said, I need help with this family.’"
Lessons of experience
If she had it to do over again, Case would have urged the palliative care task force to write standard procedures for PCCs as they developed the DNR forms, rather than wait until the forms were already in use. "People say that procedures just sit in a drawer, but there are moments when somebody challenges a policy, and having it on paper helps to maintain objectivity," she explains. "Even after we write procedures, we can tailor them. They’re always a work in progress. But we should have had something in place first."
On the other hand, Case is pleased that the task force took time to build a tight case for better EOL care. Case says they needed the documentation to generate full support of the hospital and medical staff. Chart reviews and focus group feedback cinched it so nobody could argue the point.
However, she cautions interested QI/TQM readers, "Don’t just try to take forms that worked in other systems and throw them at your people. They’ll fight it. You have to go through the steps to get consensus first." Case estimates it could take up to two years to put the changes in place.
Improvement measures are still in the works. Case says that most of the data collection will be retrospective. Analysis will probably compare the use of DNR orders before and after the palliative care initiative. For example, for patients having similar medical profiles, were DNR orders implemented more often and sooner in the patient’s stay after the project than before?
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