Good end-of-life care requires cultural change

Multidisciplinary approach pays dividends

By Suzanne K. White MN, RN, FAAN, FCCM, CNAA

Executive Vice President

Chief Nursing Officer

Kate Payne, RN, JD

Clinical Ethicist

End of Life Team Leader

Clarence S. Thomas Jr., MD

Chairman, Department of Cardiac Sciences

Medical Director Critical Care

St. Thomas Health Services, Nashville, TN

Improving the care of dying patients and families in critical care looms as a special challenge for the next century. The 1995 SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment)1 verified what practitioners knew from experience. Many terminally ill or elderly patients who die experience pain and suffering and receive little attention to their wishes and goals for the end of their lives or the time spent with their families. Improving care for these patients requires a challenging balance of preparing the patient and family for death and bereavement, while continuing to implement aggressive treatments to prolong life.

The initial discussions regarding the need to move from curative care to supportive care logically should begin early in the clinical course when the outcome is not yet clear to either the family or clinicians.2 St. Thomas Hospital, in Nashville, TN, knew these discussions, coupled with sensitive attention to the patient's wishes and goals, should occur more often. To look for innovative solutions, a team was sent to the Institute for Healthcare Improvement's (IHI) Breakthrough Series Collab orative on Improving Care at the End of Life.

The collaborative focuses on testing changes on small patient groups with the intention to change overall practice. St. Thomas chose to focus on facilitating the conversation that further aggressive care is inappropriate. Some of the lessons learned include the following:

· Precise definition of the problem and description of the process. The St. Thomas team generated a cause-and-effect "fishbone" diagram to identify specific barriers to good end-of-life care. A flowchart was created that mapped the course for a patient at risk of dying, from the time of designation until death or discharge occurred. (See above diagram.) Seeing the problem diagrammed that way helped identify specific physician and/or nursing leaders who could help remove barriers, as well as specific interventions to improve communication and care.

· Communication at the end of life. Three models are being tested to decrease fragmentation in communications. A member of the team caring for the patient - clinical nurse specialist/case manager, staff nurse, or chaplain - is charged with coordinating communication and planning. A set of guidelines, dubbed "the packet," is used by the communications coordinator and care team to make sure patient wishes and goals are ascertained and treatment plans reviewed each day. The packet also contains role descriptions of care team members and checklists to help tie up loose ends. A critical pathway is being developed along with medication guidelines and physician orders for use with dying patients throughout the institution.

· The role of critical care administration. Physician leaders, nurse executives, and managers must provide forums and insist on participation at education sessions. Administration must be committed to the proposition that care at the end of life is a part of patient care that staff at St. Thomas do well. As such, it requires resources and support to help it flourish. Like others, the St. Thomas team found that although resource use may decrease, more nursing hours, not less, are required in caring for patients at the end of life.3

· Secondary gains. The St. Thomas project began by looking at improving communication. But it is the ongoing coaching and discussion with the quality improvement team that promotes change in caregiver behavior. Recognizing nurses as pivotal in communication and planning leads to empowerment, more effective teamwork, and an increase in morale. Once the decision to focus on comfort care starts, nurses have ownership in the process and demand the privilege of being participants in the conclusion of the patient's life. This has resulted in fewer patient transfers from the intensive care unit to the general care area, where the patient waits to die. The theory of staff presence goes beyond just talking about it. It is a spiritual function underscored by discovering that the ministry of a hospital chaplain is essential, not just for patients and families but also for nurses and physicians.

As physicians become involved with the project, the team is seeing changes spreading from an individual, to his or her partners, to the point at which an entire patient unit notes that code status is addressed sooner, death is smoother, and pain is managed better by more than just project doctors.

Working as a quality improvement team has emphasized the need for a multidisciplinary approach and attention to building and maintaining consensus to create long-term improvements. Good end-of-life care is much more than a physician interacting with the family. The real challenge is changing an entire organization's culture.

References

1. The SUPPORT principal investigators. A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 1995; 274:1,591-1,598.

2. Lynn J, Harrell F, Cohn F, et al. Prognoses of seriously ill hospitalized patients on the days before death: Implica tions for patient care and public policy. New Horizons 1997; 5:56-61.

3. Stillwell SB, Woletz J, Piedmonte MR, et al. The impact of do-not-resuscitate orders on nursing workload in an ICU. Am J Crit Care 1997; 6:400-405.