Sadly, too many patients and too many doctors and nurses do not navigate end-of-life care issues succinctly or even compassionately, and failure to do so can result in enormous distress for patients, family members and clinical staff. This failure to discuss, to share thoughts and to candidly communicate also can result in harm and even litigation. This is especially the case when there is confusion about what has been said or agreed upon and when there is disagreement amongst family members about the best courses of action for severely impaired relatives incapable of making their own decisions1,2.
The use of advanced directives and the designation of specific individuals with powers of attorney for medical matters has helped considerably, but many, many older patients are seemingly unaware of these mechanisms. They also may be aware but have become complacent about availing themselves of these mechanisms or have remained sadly plagued by inertia, stuck in “the mud and the muddle” of indecision until a devastating circumstance or terminal illness catches them off guard.
Sometimes I think those on the front lines of healthcare—by that I mean doctors, nurses AND patients—do more to prolong dying than to sustain meaningful life. Life extension becomes the ultimate goal for many patients, even though that really amounts to prolonging the dying process, often accompanied by pain, suffering and the increased potential for harm resulting from healthcare. Collectively we need to do, and can do, much better!
I would strongly recommend all of you read Dr. Atul Gawande’s recent publication, Being Mortal. Set aside time for this as it will change your views of health, healthcare and what matters most to patients.
Case Study:
A 90-year-old woman, a personal friend, now somewhat frail and in slowly declining health for several years, had lived a wonderful, active life until her mid-80s. She suddenly developed bloody bowel movements and severe abdominal pain. She had been in good health generally, although she did have an allergy to penicillin, which later would play a significant role in this story.
Her physician had rendered a diagnosis of ulcerative colitis, although he had not done a sigmoidoscopy or colonoscopy, and imaging studies were vague and inconclusive. Ulcerative colitis presenting for the first time at this age is very unusual, and failure to consider an alternative diagnosis, mainly ischemic bowel disease, which is much more common, was the first error in this woman’s care. The second error was prescribing sulfasalazine and prednisone, standard treatment for ulcerative colitis, without a definitive diagnosis in an elderly frail patient. Prednisone is an immunosuppressant that can impair tissue healing.
Two weeks after starting therapy, my elderly friend was admitted to hospital having acutely deteriorated after a colonic bowel perforation, the onset of abdominal sepsis and ultimately septic shock with multi-system organ failure (lungs, liver, heart, kidney and brain). Most of her colon had been removed surgically on the day of admission. Whether any of her colon, or select areas of her small intestine remained functional, was uncertain. When I first saw her she was semiconscious, receiving parenteral narcotics for pain and vasopressors to support her blood pressure. She continued to have bloody feces, now from a colostomy tube, and was clearly in dire straights and heading toward death’s door. Her pulmonary insufficiency was substantial enough that ventilator support seemed inevitable, and dialysis also was under consideration. Even if there were a remote possibility that she might survive this illness, she likely would never, ever return to her usual productive and comfortable lifestyle, as her systemic vascular disease and ischemic bowel disease would ultimately cause her demise.
Decisions regarding her care needed to be made collaboratively among the family and the ICU doctors and nurses. The questions to be asked were compelling and the answers would have profound importance to this patient her daughters and her grandchildren.
(Continued)
Ref:
- Gawande A. Being Mortal. New York, NY: Metropolitan Books, Henry and Holt and Co: 2014.
- The Conversation Project – http://theconversationproject.org/.