| LAWRENCE M. SHUER Chief of staff End-of-Life Care |
|
 One of the hardest tasks most of us face in our practices is switching from highly technical treatment to more compassionate care after we no longer have the ability to influence the course of a patient's illness. At Stanford Hospital and Clinics, we pride ourselves on providing high-tech, cutting-edge care in order to try to cure our patients' illnesses. We are, in general, not as good at recognizing when our efforts become futile. But if we do recognize the threshold of futility, there is much more we can do by finding ways to deliver palliative care or to bring in resources that can help. Clearly, our jobs as providers of health care do not end with the admission that a patient's disease is going to succeed. Our mission statement does include the phrase "to care." We can do a better job with this. On May 28, I had the opportunity to focus on some end-of-life care issues at a retreat, that was organized principally by James Hallenbeck, a staff phyician in general internal medicine at Stanford, and Steve Pantilat, assistant clinical professor of medicine at UCSF. The gathering was funded by a UCSF-Stanford Enterprise grant and was well attended by physicians, nurses, therapists, clergy and others. The purpose of the retreat was to work toward crystallizing what we at UCSF Stanford need to do to improve care for terminal patients, including making the difficult but critical switch from the highly technical to the more compassionate care that these patients require. I recall that the concept of helping physicians become more aware and able to help in the terminal process had begun about the time I was training in medical school in the late 1970s. Elisabeth Kubler-Ross's On Death and Dying was required reading for members of my class. In some ways, I believe that our class was unusual because we held discussions on the ethics of euthanasia and whether there was a difference in active versus passive euthanasia. I, like many of you, may have had some context for our recent retreat, but it struck me at the time how easy it is to relegate such training in death and dying to the hypothetical. During the retreat's brain-storming"exercise, we came up with several tangible
ideas for how we could readily improve our end-of-life care. Some ideas were as simple as
having someone from the chaplaincy service telephone or send a condolence note to the
family of anyone who dies during hospitalization. This is a practice that exists at some
of our facilities, but not consistently. One can understand how thoughtful and appreciated
a simple action such as this can be. Stanford nurse manager Trisha Jenkins, who works with palliative care and related issues, reported on the results of the End of Life Care Survey, which many of you here at Stanford and at Packard hospitals filled out last fall. The survey included more than 600 staff responses and the perceptions of approximately 35 families who were interviewed about the quality of care provided to their loved ones around the time of death. Trisha noted that there were two major findings: First, patients, families and caregivers wanted better communication, and, second, many of the respondents requested palliative care expertise in the form of a consultative team and/or inpatient unit. More than 30 percent of the caregivers completing the survey felt that team communication was frequently or always a problem. All caregivers felt that unrealistic expectations of the families and/or patients were a barrier in providing end-of-life care. Interestingly, all caregivers felt that their co-workers generally showed greater denial or unrealistic expectations of patient prognosis than they did. Nurses, social workers and residents saw unrealistic expectations as a bigger problem than more senior physicians did. Family interviews supported the notion that different opinions may exist among the providers, since 47 percent of families reported receiving contradictory messages, and similarly, 23 percent felt they received conflicting recommendations. A high percentage of families said that they received little information about the dying process and the focused care delivered at that point. Seventy-four percent of non-physician caregivers and 47 percent of physicians said they would use a palliative care consulting team if available. While the survey did not specify what assistance the caregivers desired, I think we can infer that a palliative care team would help by: 1) improving communication and reducing disagreement; 2) mitigating unrealistic expectations of patients, families and staff; 3) supporting the efforts of busy clinicians who often can't spend as much time with each patient as we would like; 4) disseminating communication about the dying process and comfort care; 5) helping to address and assess bereavement needs; and 6) defining and recommending symptom management. It was instructive to learn that 38 percent of physicians felt that they were inexperienced in managing dying patients' symptoms and 36 percent felt inexperienced in pain management. The retreat also served as a clearinghouse of information and resources for those of us interested in end-of-life care and related issues. There really is a lot going on in this area throughout the medical field, and much of this information is available on several useful websites: http://www.growthhouse.org - Growth House Annotated provides useful links about palliative medicine and related categories (pain management, quality improvement in end of life care, etc.) http://www.aahpm.org - Home page for the American Academy of Hospice and Palliative Medicine. http://www.Lastacts.org - Web site of the Robert Wood Johnson Foundation. Last Acts group with a professional forum and newsletter, resource directory and a search engine. Information on grant activity is also available. I believe the retreat demonstrated that UCSF Stanford has a lot of talent and interest in the field of end-of-life care. Moreover, we can distinguish ourselves in being at the forefront of providing the best in this area of medicine if we realize our potential. I encourage any of my colleagues who has an interest in this area to contact James Hallenbeck, through the VA in Palo Alto at (650) 493-5000, or Trisha Jenkins, who coordinates end-of-life issues at Stanford Hospital and Clinics, at (650) 498-5837. |
COLUMNS Chief of Staff President of the Medical Staff Fact File: Social Services NEWS Lee's Patients Soar Five Miles High On-Line Chart Training Offered for Physicians Cost Studies Seperate Value from Price County Medical Association Honors Stanford Physicians |