Planning for end of life care, and having the necessary conversations beforehand, can alleviate at least some of the harm suffered by those at the most vulnerable time in their lives, as Dr Dan Cohen, International Medical Director at Datix explains.
Sadly, too many patients, doctors and nurses do not navigate end-of-life care issues succinctly or even compassionately. 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 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 course of action for severely impaired relatives incapable of making their own decisions.
The use of advanced directives and the designation of specific individuals with powers of attorney for medical matters can help considerably, but many older patients are unaware of these mechanisms. They also may be aware of them but have become complacent about availing themselves of their options 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 line of healthcare—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.
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 straits 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.
My elderly friend did not have an advanced directive and her two daughters, who fulfilled the criteria for providing “substituted judgement” were overwhelmed by her illness and undecided about what to do. As lifelong friends, they reached out to me when their mother became so ill.
They expressed somewhat different opinions regarding next steps. As my friend was failing despite heroic interventions, the clinical staff was looking for assistance with planning care at this perilous time in her life.
The daughters, their husbands and I met with the ICU physician and primary nurse, who carefully and compassionately explained what was happening to their mother. However, it seemed to me that the family had not realized the severity of the situation and the queries that needed to be addressed. I asked the doctor if I might, in my own way and as their friend, explain what was going on. She, of course, encouraged this.
My friends looked toward me expectantly and I said the following: “Your mother, who also has been my dear friend for many years, has an overwhelming infection that has caused her vital organs to shut down. As each organ is dependent on the other, this condition is called multi-system organ failure. With your mother’s underlying catastrophic intestinal problem, the likelihood of her surviving this hospitalization is very remote.
“Even if she were to survive this infection and multi-system organ failure, she would never, ever return to her normal lifestyle. The doctors and nurses want you to help them decide just how aggressively to provide care for your mother at what is most likely the terminal phase of her life. You have to consider whether what the doctors and nurses will do from this point will prolong your mother’s life or prolong the process of her dying.
“What is it that your mother would want for herself and what would she want you to do for her at this point in her life? These are the questions you sadly, and with great difficulty, must address today.”
They got it!
My friends asked me to help them with their choices and I explained the options. In the end, they agreed to continue pain medications and intravenous fluids (to facilitate distribution of pain medications) but that the use of blood products, antibiotics, and vasopressors would be inappropriate, as would dialysis, ventilator support or CPR and most other medications.
After much discussion and soul-searching, both daughters agreed and the doctor wrote the orders. We embraced as good friends do at such times, and I left the daughters and their husbands alone for their own conversations, contemplations and perhaps prayers.
Later that evening I came back to the hospital to see my dying friend. She was unconscious and not responsive. Sadly, she seemed to have developed a bright red, diffuse rash across her body, with hives and swelling of her fingers, lips and eyelids.
I wondered about this because an allergic reaction to medication seemed the most likely cause. Looking around the room I noticed that a small bottle was hanging on her IV pole with medication dripping into the tubing even though most medications, including antibiotics, had been discontinued six hours earlier.
I noticed that the bottle contained piperacillin and was labelled with another patient’s name. Piperacillin is a form of penicillin used for treating very serious infections. My friend was having an allergic reaction to another patient’s medication, administered by error.
So, at death’s door, in the terminal phase of a terminal illness, my friend was now experiencing a systemic allergic reaction and conceivably was itching terribly, although this could not be assessed since she was unconscious. I was hopeful that the narcotic medication was sedating her sufficiently to alleviate any subjective symptoms, but of course could not be sure.
I slumped into a chair at the bedside, took a deep breath, held my face in my hands and pondered just how complicated healthcare can be and how unnecessary and unfair this all was for my friend at the end of her life.
The moral of the story
Every year thousands of patients die because of healthcare. Many orders of magnitude more are harmed by our insufficient and inefficient processes of care, our overutilization of diagnostic and therapeutic interventions and our human liabilities and failings.
More often than not, multiple contributing factors align, resulting in harm or even death at the tip of the needle. Planning for end of life care, having the necessary conversations beforehand, can and should alleviate at least some of this harm for those at the most vulnerable times in their lives.
About Dan Cohen
Dr Dan Cohen was formerly chief medical officer and executive medical director for the US Department of Defense health plan that provides or purchases healthcare services for more than nine million beneficiaries worldwide. As director, office of the chief medical officer, Dr Cohen was responsible for important aspects of oversight for clinical quality, patient safety, population health and medical management initiatives across this comprehensive system.
He trained in pediatrics and hematology/oncology at the Boston Medical Center, Boston University, and the Boston Children’s Hospital, Dana Farber Cancer Institute, Harvard Medical School. He is a Senior Fellow of the Royal College of Paediatrics and Child Health and a Fellow of the American Academy of Pediatrics.
He retains a faculty appointment in the Department of Pediatrics at the Uniformed Services University of the Health Sciences, F. Edward Hébert School of Medicine, Bethesda, Maryland, US, where he once served as dean for student development. Datix can be contacted at: firstname.lastname@example.org
Risk Management, US, Dr Dan Cohen, US Department of Defense