Joanne Lynn, M.D., invited participants in the Institute for Healthcare Improvement (IHI) Collaborative on End-of-Life Care to answer such questions by thinking of themselves as promisekeepers. By considering barriers to good deaths, providers might begin to uncover what is needed now to make life-and death-better for patients and families. Promisekeeping, Lynn suggested, would allow the usual person, coming to the end of life, to be comfortable, confident of care, and living a meaningful life. All providers can strive to create environments that show pride in their abilities in end-of-life care, that offer high value and sustained care for the dying. Joan Teno, M.D., from Brown University, concurred, saying that groups might go so far as to write down the commitments they are willing to make. We need to get to systems that are 100 percent trustworthy, Teno said.
Forty-seven groups are participating in the IHI Collaborative, a one-year project designed to help organizations become quick studies in improving end-of-life care in their communities. Through a series of learning sessions with collaboration of experts in the field, and by promoting rapid-cycle studies, IHI encourages participants to break through barriers and offer real-world solutions to problems in current operations.
In November, almost 200 healthcare providers, all six months into the learning process, met for two days to describe their projects, what they have accomplished, and where they have run into problems. The meeting offered participants a chance to talk to one another and learn not only from the IHI faculty, but from the experience of their colleagues.
At the first learning session held in July 1997, groups agreed to improve practices in four key areas: pain and symptom management, continuity of transfers, meaningfulness and family relationships and advance care planning. Groups discussed the state of current practice, as well as ideal practices, and proposed targets for their own populations. Many participants agreed to work to include pain as the fifth vital sign, ensuring that pain assessment occurred 100 percent of the time.
At the second learning session, attendees reported early successes, many in getting more patients and families to participate in advance care planning. Many groups have increased the number of patients who receive comfort care, or who receive such care for longer periods of time.
Several groups, however, reported that getting pain as the 5th vital sign is not an easy process. One group reported that doctors are sometimes reluctant to include pain as a vital sign, claiming that pain is not truly quantifiable. Another group reported that conducting in-depth pain assessments in a public clinic is virtually impossible, especially if patients have no privacy, or are reluctant to talk about pains associated with HIV/AIDS.
Yet another group reported reluctance by doctors to participate at all. The same group, however, finally received a call from a doctor trying to speak to a dying patient. The doctor reportedly called the team and said, I have a dying patient and I need a packet. It turned out that he expected a packet of materials and readings that would make a kit enabling better end-of-life care. The team thought they could assemble such a kit and did so virtually overnight!
There are, of course, no packets or easy prescriptions for correcting what's wrong with dying in America. Indeed, there are many obstacles, and the IHI participants have encountered remarkably similar ones, including:
Joanne Lynn noted that major barriers remain in the area of rapid response to patient symptoms, symptom breakthrough, and coordination of services across sites. Groups need to measure how changes affect families and patients.
The critical activity for the groups working to relieve pain, before the next learning period ends in March, will be to determine whether pain assessment affects patient care and comfort. If pain is only marked on a chart, but not relieved, then its assessment will have little effect on anyone. Similarly, advance care planning needs to come in a context of enabling patients and families to feel more in control, more valued. At its best, it must make a difference in how people feel, enabling them, Lynn said, Not to see the photographic negative of terrible dying, but to see how we can live meaningfully in the shadow of death.
Tom Nolan, Ph.D., a statistician with Associates in Process Improvement, provided insight and direction for groups struggling to implement the rapid cycle process. He encouraged them to view the model for improvement as a sequential set of circles (see chart). Groups must continually ask what it is they are trying to accomplish, how they will know a change is an improvement, and what changes might lead to improvement.
Nolan told participants that inaction is inappropriate, especially when a system is performing poorly relative to its potential, or when a variation in practice is so great that someone must be wrong. Sustaining change, Nolan asserts, is easiest when reversing, or going back to old habits, is as difficult as possible, or when participants have agreed to uphold specific standards.
Lynn suggested that groups need to measure enough to be persuasive. What's enough to know that you've actually made a difference? What is the smallest measurement you need to persuade yourself you've made a difference? Groups were encouraged to see their systems from the perspective of patients and families (see sidebar).
The Collaborative will meet again in March to review progress and plan for the National Congress to be held in St. Louis on July 20-26. For more information on IHI and the congress, contact Rebecca Steinfield, Institute for Healthcare Improvement, at 617-754-4825 (phone), 617-754-4848 (fax), or email: rms5@ix.netcom.com.
SIDEBAR
The problems of the two groups are likely to be quite different. Those who
feel oppressed and constrained are certainly aware that they are part of a
larger system, and may well be daunted by trying to find the
fixable piece. In contrast, those who are sure that their clinical
services are wonderful are mainly trying to gain enrollment of more people to
serve. Within the Collaborative, most hospices fit the latter description.
However, they often fail to see themselves as part of a larger system.
Review your perception by answering these questions as if you were a
seriously ill, last-phase of life patient in your care system. Ask others in
your unit or system to answer them as well - and decide how you can do better. Effective
quality improvement is impossible unless we can envision better systems and
figure out the possible steps to get there from here.
A. Were the last weeks or months especially meaningful for the patient
and your family?
B. Did the health care system do anything to help or to get in the way
of having the last few weeks or months be especially meaningful?
As one exercise, IHI participants were asked to answer the following questions
as if they were patients who were seriously ill and in the last phase of life.
Responses generally fell into two categories, which Joanne Lynn, characterized
as the we're-doing-God's-work group and the we'd-be-great,
except-for-our-work environment, which precludes real change.