The team from Gundersen Lutheran Medical Center, anchored by a facility based in La Crosse, Wisconsin, included an advance practice nurse, an oncologist, and a clinical ethicist. Since the early 1990s, Gundersen, along with other major health care systems in the La Crosse area, has worked on community-wide programs to improve advance care planning. Staff from Gundersen and Franciscan Skemp health care developed an initiative called "Respecting Your Choices," which used patient and family education, community outreach, education for nonmedical professionals, standard training sessions, and standard methods for documenting and tracking advance directives. At the end of a two-year period, a retrospective study of 540 decedents found that 85 percent had completed an advance directive (compared to a national average of 15 percent) and that, of these, 95 percent were in the medical record. In 98 percent of the deaths, treatment was forgone, as patients had directed.
The team decided to refine the usual approach to advance care planning by writing a script physicians could use when talking to patients. In these cases, advance care planning conversations began with the question, "What makes you happy at this stage of your illness?" The script helped clinicians guide discussions about end-of-life decision making by touching on goal setting, resources, emotional issues, and communication. As a result of such discussions, some patients changed the course of their care and treatment.
For instance, following one round of chemotherapy, a 73-year-old woman with advanced cancer talked to the team's advance practice nurse. The woman had suffered severe symptoms during previous treatment, and her family did not want her to pursue another round of chemotherapy. The patient, however, said that she "had never been a quitter" and felt that she needed to try chemotherapy "one more time." She told the nurse that if the chemotherapy made her sick again, she would stop the process, realizing that doing so would lead to her death.
After the chemotherapy, the woman was rehospitalized with a high fever, pneumonia, and increased lethargy. When her oncologist recommended more chemotherapy, the advance practice nurse stepped in to discuss the patient's wishes, sharing notes from the earlier conversation. The oncologist agreed to end the treatment; the patient was admitted to hospice and died comfortably at home three days later.
This woman and others cared for by members of the Gundersen Lutheran team benefited from the team's aims to improve advance care planning and to provide opportunities for patients and families to find meaningfulness in the face of serious illnesses. Changes tested included:
The team measured its progress by tracking:
Gundersen's project achieved several tangible results:
Next steps will be monitoring the program's effect on the median length of hospice stay; studying the value of the tool itself, as well as the process; finding additional ways to use the interview instrument in patient-provider interactions; and expanding the use of interventions with other patient populations.
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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.
For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].