Last month I began the story of end of life discussions and the importance of setting the stage for these conversations before they become urgent matters at hand. I presented the story of an elderly friend, desperately ill with ischemic bowel disease in an intensive care setting and slowly, but progressively approaching her moment of death.
The story continues
My elderly friend did not have an advanced directive and her two daughters, who fulfilled the criteria for providing “substituted judgement”1 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. Alarmingly, I noticed that the bottle contained piperacillin and was labeled 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 pain medications were 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 needle2.
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.
References:
1. Torke A, Alexander G, Lantos J. Substituted Judgment: The Limitations of Autonomy in Surrogate Decision Making, J Gen Intern Med. 2008 Sep;23(9):1514–1517.
2. Reason J. Human Error. Cambridge, UK: Cambridge University Press: 1990.