“But I felt like I failed her because, for all the time I knew her, I never could figure out her wishes, her goals, to determine if the treatment I was prescribing was what she really wanted. Did I give her time on this earth she wouldn’t have had otherwise? Or heedlessly administer chemotherapy when all she wanted was to just let go? I guess I’ll never know.”
The above text was lifted from the final paragraph of a touching story written in the New York Times by Dr. Mikkael Sekeres. Dr. Sekeres is the director of the leukemia program at the Cleveland Clinic. I was struck by the fact that after so many years of caring for his patient medically and at times emotionally he was not able to discern her true desires and wishes. It appears he never asked.
More and more teaching hospitals and medical student programs are incorporating the teaching and training for Palliative Care. Palliative care is comprehensive, interdisciplinary treatment of the physical and emotional suffering of people who are seriously ill. Sometimes confused with hospice, palliative care is not exclusively for people at the end of their lives. Nor is it only for people with cancer. It deals with the “total pain” of patients: physical, psychological, social, and spiritual. Palliative Care deals with the tough questions. In addition, Palliative Care has been shown to improve the quality of and even prolong the lives of the very ill.
When I was first introduced to Palliative Care 20 years ago I was working with a young woman patient, with widespread cancer who had significant abdominal pain and nausea. At first, the medical team focused on controlling the pain then dealing with the side effects of her meds that caused her nausea. As the relief began to emerge so did her questions. She started asking hard questions: Am I dying, how should I prepare and should I spend my time with my family then in the hospital with these treatments that don’t seem to be working? She knew from the time of her diagnosis that this cancer would shorten her life. That knowledge didn’t keep her from pursuing treatment or from hoping that the treatment would work. She just needed someone to talk out the issues and provide viable options so she could gain control of her life.
As the months passed and her hospitalizations became more frequent as the cancer progressed the Palliative Care Specialist visited daily. Their visits together were like strategic psychotherapy sessions. Memorials were discussed along with a detailed preview of what the final hours of life would look like and what she did and did not want to have happen. All of these conversations brought great comfort to my patient as well as her family.
On her final discharge home from the hospital she warmly acknowledged and thanked each of the Medical team for their work and care. But it was her Palliative Care “Coach” that she gave the warmest and most heartfelt gratitude. He dealt with her emotional pain and suffering that none of us was able to assess and treat. She lived two months longer surrounded by those she loved and as created and described during one of her last Palliative Care sessions.