Supportive Voice  Vol. 10 No. 2  Spring 2004

by Sr. Clare Marie Butt, MSN, AOCN

Sr. Clare Marie Butt is Supportive Care Coordinator, St. Joseph Medical Center, Reading, PA. St. Joseph is a member facility of Catholic Health Initiatives, a national, not-for-profit health care organization that works for improved end-of-life care.

The Code of Ethics for Nurses with Interpretive Statements tells us, "The measures nurses take to care for the patient enable the patient to live with as much physical, emotional, social and spiritual well-being as possible. . . . This is particularly vital in the care of patients and their families at the end of life to prevent and relieve the cascade of symptoms and suffering that are commonly associated with dying" (1).

Given that patients may experience a "cascade of symptoms and suffering . . . commonly associated with dying," we asked the following questions: What can we do to help patients and families navigate this important life passage? Can we listen deeply to people facing advanced illness so that they feel understood, respected, and valued? How can we assist them to define and create high-quality living as they approach death? With these questions in mind, and with the backing of our medical center's leadership, we set out to improve end of life care at St. Joseph Medical Center, in Reading, PA.

Making the Case
First, we needed to show how patients were dying at our medical center. We performed a retrospective study on a random sample of 30 patients who died at the medical center in 2001 to understand better where the deficiencies and the strengths were.

We learned that patients were poorly prepared for death. The medical records of half of the deceased patients showed no evidence prior to death of a discussion of the fact that further treatment would not benefit the patient. The records of only 53 percent indicated that their emotional needs were addressed prior to death; the records of only 60 percent showed that their emotional needs were addressed.

Documentation of a good death (chart 1) was only slightly better. The records of 40 percent noted that the patient died a peaceful death, those of 73 percent noted that the patient's pain was managed, and those of 60 percent noted that the patient's family was supported.

Our study showed that more than half of the do-not-resuscitate (DNR) orders were written one day or less before the patient died. In addition, more than 60 percent of patients had blood drawn for repetitive lab studies and 43 percent had medical imaging studies done on the day of or the day before death. Physicians and clinical staff responded with concern over how patients were dying at the medical center.

Forming the Team
In December 2001 we formed a Supportive Care Consult Team (box 1), using an interdisciplinary model. The team consists of the case manager, social worker, chaplain, and supportive care coordinator, who is a clinical nurse specialist. Team members work collaboratively with the patient, family, physicians, nurses, and other clinicians involved in the care to help address the body, mind, and spirit needs of both the patient and his or her family.

Education
Education on end-of-life care for all medical and hospital staff was an important part of the process. A program called Education for Physicians on End of Life Care (EPEC) was initiated for physicians. Nurses were educated with the End of Life Nursing Education Consortium (ELNEC) curriculum. We team members enhanced our expertise in end-of-life care by attending both EPEC and ELNEC presentations, as well as presentations on end-of-life care at team meetings, and by participating in a self-study program. We dedicated a full year to intensive study, while simultaneously taking consults and learning from them.

Structures
The team put in place structures intended to improve end-of-life care for every patient. These consist of:

• Policies for care of the dying, including a Supportive Care Consult Team
• A clinical pathway end-of-life care
• A brochure for physicians called Supportive Care Consult Team
• A family education booklet called When Someone You Love Is Dying

Case Study
Joe (whose name and some details of his case have been changed to protect privacy and confidentiality) was a 57-year-old man diagnosed with advanced esophageal cancer. He was separated from his wife and saw his two teenage children occasionally. He wanted very much to be cured. His goal was "to have this (his cancer) taken care of." He was so weak that a long life was not likely.

We supported him as a team. The coordinator and physician worked to get his pain under control. The social worker helped him get long-term disability leave from his job. The case manager worked to have his insurance approve the treatments that he so desired in order to improve his chances for prolonging his life. The chaplains visited every day to offer emotional and prayerful support.

We accompanied Joe through many ups and downs, including a period on the ventilator. We supported his family, and when he recovered enough to come off the ventilator, we rejoiced with them all. Joe chose to complete an advance directive, and asked for the coordinator to be present when he spoke to his family about it. He demonstrated great courage in facing his illness and deep love for his family. His family in turn supported him and so did the team as he gradually came to terms with the terminal nature of his disease.

Joe set some more goals for himself. One was to speak with his wife, and the other was to have his children visit. We witnessed loving conversations between Joe and his children and peacemaking with his wife. We assisted Joe in transferring to another facility where he sought further treatment, as approved by his insurance. We learned that Joe died peacefully at home several weeks later.

So, what is a good death? Joe's was one example. It was in accord with his goals and wishes, free from avoidable distress, and characterized by preparation to prevent and relieve the "cascade of symptoms and suffering that are commonly associated with dying."

We find that the advantage of a consult can be:

To help move a process of decision making forward by offering understanding and respect for who the patient and family are
To provide emotional support
To respect the cultural and spiritual preferences of the patient and family Patients and families feel more in control as they are assisted by the team to set goals, make decisions, and define what "quality of life" means for them. The consult makes the transition into the later phases of dying smoother and a better experience for both the patient and the family.
Measuring the Impact
By March 2003, our Supportive Care Consult Team had made 38 consults. Of the 38 patients, 14 (37 percent) were discharged and 24 (63 percent) died while on consult.

When we measured our impact on patient outcomes, we knew we were on the right track. Those patients who died while on consult had much improved outcomes when compared with the patients in our first study in 2001. The patients who received a consult showed good documentation of preparation for death. More than 90 percent of the medical records showed that there was a discussion indicating that further treatment would not benefit the patient (a nonbeneficial note had been placed in the chart) and that their spiritual and emotional needs were addressed prior to death.

Documentation of a "good" death—indicating that it was peaceful, that pain was managed, and that the family was supported—was also greater than 90 percent in each category. Most patients on consult had their DNR status addressed early—four days or more before they died. We also discovered that the ordering of repetitive lab studies and imaging studies was reduced for patients on consult.

Finally, we were able to show that the financial impact of a supportive care consult showed cost avoidance. We measured the actual direct cost savings, comparing the costs before the consult with the costs after it. An average $985 was saved per case. Although saving money was not our primary focus, those savings demonstrated fiscal responsibility. We showed that good end-of-life care is also evidence of good stewardship of the hospital's resources.

We were encouraged by this data and so was our medical center. With a patient and family focus, the Supportive Care Consult Team can now speak of these documented benefits:

Timely discussion of palliative care goals
Respect for patient wishes
Excellent pain and symptom management
Emotional support
Spiritual care
Cost-effective care 

Challenges
The initiative to improve end-of-life care at St. Joseph Medical Center has not been without its challenges. We need to continue to educate physicians and staff about the demonstrated benefits of supportive care and to encourage them to use the consulting team's services. Another challenge is the belief that good end-of-life care takes more time, of which there is none to spare. Doing things differently rather than doing more things, is our message. What we are striving for is excellence in end-of-life care for every patient and family. That is not an easy task. It is one requiring leadership, vision, role modeling, and perseverance.

In the end, it is our patients and families who give us the courage to continue improving end-of-life care at our medical center. By paying attention to the patient's goals and wishes, spiritual and emotional concerns, physical comfort, and family support, we have found that the experience of dying can be filled with love and reverence, displacing distress and fear. As our former system president and CEO, Patricia A. Cahill, JD, once said, "A good death is just as important as a dramatic cure." Our team knows this to be true. We consider it a privilege to be part of our patients' final journey by helping them navigate this important life passage. And so we help prevent and relieve the cascade of symptoms and suffering that are commonly associated with dying.

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(1) American Nurses Association, Code of Ethics for Nurses with Interpretive Statements, Washington, DC, 2001.