Lessons from the Front: Tough Discussions
I heard a fascinating talk today from John Hill, MD, a Carle Foundation Hospital critical care physician who discussed end of life issues with patients and families in the ICU. At times, he reminded us, we need to reframe the families’ questions. It isn’t “Doing everything” or “Not doing anything”, but arriving at realistic goals shared by the patient or their surrogates and the treating team. Graciously navigating the recurrent renegotiation of goals based on the daily changes in the physical status of the patient is the next, and often more complex part of the process.
Advance Directives have some limited benefits in regard to outlining specific courses of action, but their most valuable role is in establishing who the appropriate proxy is for discussions if the patient is unable to speak for him or herself. Many, unfortunately, stop short at naming a proxy but do not have the necessary discussions with their surrogates about what their true wishes for end of life care are.
Prognostication is always difficult, particularly when “it is about the future”, per Niels Bohr. (I had always thought Yogi Berra said that.) This is one thing that makes these discussions so uncertain. As a physician or nurse at the bedside, nothing beats daily communications with the family to establish rapport and trust to facilitate conversations. The natural inclination for some of us, however, particularly when we are not accomplishing the hoped-for turnaround in clinical status, is to withdraw from daily ongoing family discussions. When a physician withdraws, the family gets its information from multiple, often discordant sources, worsening communication.
Withdrawing from family interactions is often a natural tendency, particularly if we aren’t helping the patient to improve. A few years ago, I was, despite my best efforts, slow in establishing a correct diagnosis in a patient with Amyotrophic Lateral Sclerosis. My delay in diagnosis made no difference in long-term outcome, but severely impaired the husband’s confidence in my care. As this sweet lady lay dying in the hospital from a complication of her ALS, I had to daily screw up my courage, and whisper a quick prayer for wisdom before venturing back in to see her and her family. I could have signed off the case, leaving further care to the primary care team, since I had no medical intervention to offer, but my conscience wouldn’t let me. [I didn’t bill for my last few weeks of visits with the patient.] I will never forget some of the more subtle presentations of this rather common disease, nor will I forget the way God answered my prayers for courage and wisdom in meeting the family daily.
Dr. Hill’s take home lessons?
1) Tough conversations regarding prognosis and patient wishes are easy to avoid, but we shouldn’t give in to this temptation.
2) The quality of the relationship and discussion with the proxy has a profound impact on the ability of the surrogate to assist the medical team in decision making.
3) Withdrawing from a patient and family due to our own feelings of inadequacy is not only bad medicine, it is cowardly and unethical.