By David Brabeck, MD, FACP
Medicine can be a strange business. Trainees are often thrust into situations involving life and death in which there is often little formal education for end of life experiences. Moreover, relatively few have personally experienced family members or loved ones dying. The population of the United States is aging and palliative care is a growing field. Despite this, formal medical school education regarding palliative care and hospice is quite varied and often inadequate. A recent review in the journal Medical Education reported that medical schools’ curriculums include between two hours and several weeks of training for end-of-life issues.
With limited training in this area, residents and supervising attendings are often left to experiential education to guide them in their communication and medical decision making when a patient is close to dying. These can be difficult waters to navigate when futility of care and patient’s wishes collide.
We learned in medical school the Latin phrase, Primum non nocere: “First, do no harm.”
We learned throughout our training and beyond of the many technological medical “miracles” that we have in our treatment arsenal. Yet no one has been able to define for all the best way to die. How best to accept death is different in every circumstance, with every individual, and for every culture. As a result of this variability in the acceptance of what is the best way to die, so too are the difficulties in communication techniques utilized to fully appreciate a patient’s wishes.
I am a hospitalist. In medical school, I had no formal training in palliative care. In working with residents, we discuss the abstract concepts of autonomy, futility, nonmaleficence, and beneficence. However, when it comes time to discuss face-to-face with patients or families the appropriate time to actively seek out “comfort care measures,” these conversations cease to be abstract. In practice, real-world patient questions turn out to be, “What are your goals?” and “How can we help you to be most comfortable?”
In his book Being Mortal, Atul Gawande, MD, suggests five questions to help guide discussions about end-of-life care.
- What is your understanding of where you are and of your health (or illness)?
- What are your fears or worries for the future?
- What are your goals and priorities?
- What outcomes are unacceptable to you? What are you willing to sacrifice and not?
- What would a good day look like?
These questions help frame in very concrete ways the difficult discussions that must occur with patients and/or surrogates in order to understand and achieve the ultimate wishes of patients.
Dr. Gawande and others in the Serious Illness Care Program at Ariadne Labs have realized the importance of having these necessary conversations and have provided practical suggestions to providers to frame these discussions.
Recently, I had the honor of caring for two patients, both of whom had terminal illnesses.
“Mr. Jones” had invasive presumed metastatic lung cancer for which he had refused further treatment. When I admitted Mr. Jones, he was fully capable of making his own medical decisions. After 24 hours of inpatient treatment, including noninvasive ventilation, IV therapy, and antibiotics, he just wanted to get home to die comfortably with his wife by his side.
“Mr. Smith” had a recent spinal cord injury and a concurrent, rapidly progressive but poorly understood neurodegenerative disease; he had been admitted to our hospital several weeks prior. When I met Mr. Smith, he was unable to make informed decisions. However his healthcare proxy decided that the time had come to focus on the patient’s comfort. She, with the support of his family, surmised that the patient would not want further suffering and simply would want to get back home.
With help from professionals in nursing, case management, social work, and palliative care, we were able to achieve the wishes of both of these patients and their families. Mr. Jones died at home 48 hours after discharge. His wife was with him. He was sitting peacefully by the window as he passed away.
Mr. Smith died at a hospice home in his hometown five minutes after the ambulance arrived at the hospice center. His final communication with his loved one was a tear that trickled down his cheek. Interestingly, Mr. Smith’s lifelong hobby was all things automotive. His family thought that a final ride in an ambulance may have been a fitting last experience.
Perhaps the most good that we achieved with Mr. Smith and Mr. Jones was not beating the exacerbation of their illness or diagnosing their disease. Perhaps the most good we achieved was by helping Mr. Jones and Mr. Smith to achieve peace and relief of suffering. We were able to determine the desires of these patients by having direct conversations about their final wishes.
Understanding abstract concepts is important to help guide discussions, but using plain, clear language and phrases to frame conversations is crucial to ensuring that patients’ desires are understood and that their wishes are met. Medical schools should take care to include the instruction on how to practically frame these end-of-life discussions and prepare trainees for how best to navigate these interactions.
These are not easy decisions or conversations. But they are critically important to understand and appreciate how, first, to do no harm, and to do right by the patient…especially at the end.