A patient is dying. The family wants to do everything possible prolong their loved one’s life. “The clinical team assumes that there is a right thing to do, and that we need to convince the family of the right thing. That usually does not work very well,” says Robert M. Arnold, MD, chief of the section of palliative care and medical ethics in the school of medicine at the University of Pittsburgh.
Once communication breaks down, it is difficult to rebuild. Clinicians, ethicists, and palliative care all should be talking to each other to be sure the family hears a common message. “Whenever there are a number of different people talking and everybody’s emotional, there’s a high chance of misunderstanding,” Arnold observes.
One family member asked, “Why are all these different people asking me what my dad would want? I have been really clear. Why do I have to go through this over and over again?” Sometimes, sparse documentation is the problem. “The chart is an inexact way to communicate,” Arnold laments. Ethicists or clinicians chart comments like, “Talked to the family” without any specifics. The next provider has no idea what has been covered or what agreements have been made. “The family doesn’t feel heard. The family feels like they are being talked into something,” Arnold says.
It might not be so much an ethical issue as it is a conflict negotiation issue. “In many settings, what the ethics consult service does is, in fact, conflict negotiation,” Arnold explains.
Clinicians might call ethics at a point when they are frustrated with the family. They started by telling the ethicist: “Ongoing treatment is futile for this patient.”
“What they really want is for us to say, ‘You are right, and it is perfectly appropriate to withdraw interventions over and above the family’s objections,’” says Rebecca Volpe, PhD, director of the clinical ethics consultation at the Milton S. Hershey Medical Center in Hershey, PA.
What actually happens is something different. “It’s our job to talk about their understanding of futility,” Volpe says.
The word “futile” carries a lot of weight. However, there is not broad agreement about what the term really means. “If you ask five clinicians, you are liable to get five definitions,” Volpe predicts. “The fact that people use the word differently is really pretty dangerous.”
One clinician might think treatment is futile if it merely extends the patient’s life, with no hope of meaningful recovery. Another clinician might think treatment is futile if it is not in the patient’s best interests. A third clinician might think treatment is futile if it is not what he or she personally thinks would be best for that situation. “Many of these thought processes happen below the level of consciousness,” Volpe says. “It’s not that individual clinicians are bad, paternalistic, or unthoughtful. It’s just that we all come from our own values paradigm.”
There is a sense that ethics is completely subjective, with no gray areas. “The word ‘futility,’ therefore, means whatever the individual clinician thinks it means,” Volpe says.
Since there is no objective way to define “futility,” clinicians’ own values come into play, as opposed to the patient’s or family’s values. “These are the consults where we are giving the clinician an answer they don’t want. Part of my job is to help the clinician see it how the family’s seeing it,” Volpe explains.
A common scenario is that clinicians expect an ICU patient to die in days to weeks. Therefore, the team believes it is wrong to continue to subject the patient to life-prolonging interventions that may be causing discomfort or even suffering. The family objects, and ethics is brought in. The solution, says Volpe, is “to bring it back to goals. You can’t talk about futility without first talking about goals.”
Once the patient’s and family’s goals are defined, clinicians can respond based on whether it is possible to achieve those goals. The family might say the patient would want to live as long as possible and die knowing everything had been tried. The clinician’s goal is for the person to be allowed to die comfortably. “It’s a natural human response to see things from your own values paradigm,” Volpe says.
Switching the discussion to goals of care helps clinicians see it from a different perspective — the family’s. “It’s the treating team’s job to help the family make good goals,” Volpe stresses. “It’s shocking how often the family doesn’t have a good understanding of what various goals would look like.”
A family may say “Dad’s a fighter, and would want to know everything had been tried,” without really knowing what “everything” means, or what the option of home hospice would be like. Time-limited trials are a middle ground. “It appeases everyone. We can go ‘all in’ for a period of time, and then re-evaluate,” Volpe notes.