I always say to frontline caregivers, “Who we choose to be every day we show up for practice literally has the power to determine how people are born, live, suffer and die.”
Mr. Abrams was found lying crumpled at the bottom of a set of stairs in his home after sustaining a cerebral head bleed. His son called 911 and Mr. Abrams quickly was brought to the ED of an academic medical center. Admitted to the neurosurgical ICU, Mr. Abrams had a battery of diagnostic tests and surgery, which ultimately led to the diagnosis of irreversible neurological damage. The neurosurgeon explained to Mr. Abrams’ son, Josh, that there is little to no possibility his father will wake up and be able to interact with him.
“The decisions facing you, are whether to authorize our performing a tracheostomy and inserting a feeding tube so we can transfer him to a long-term care facility, or to authorize transitioning him to purely palliative goals,” the neurosurgeon said. “With palliative care we will keep him comfortable with the outcome of a peaceful and dignified death. If we supply no liquids or nutritional supplements, he will most likely die of dehydration within 7-21 days. Would your father want to live if he understood that there is little to no hope of a meaningful recovery, or would he welcome a comfortable dignified death?” Josh is torn. He is very clear that his dad, an attorney, “lived in his head” and would never want to live if there was no chance of meaningful recovery. “He is larger than life, and just last week won a huge corporate verdict that should net him more than a million dollars,” Josh says. “My sister is on the West Coast and I think she needs to weigh in on this decision too.” You are the neurosurgical ICU nurse and Josh turns to you for advice.
Provision 3 of the ANA Code of Ethics for Nurses makes clear that the nurse’s duty is to promote, advocate for, and protect the rights, health and safety of the patient. Provision 1.4 of the ANA Code of Ethics for Nurses addresses the nurse’s responsibilities to promote the patient’s right to self-determination. The importance of carefully considered decisions regarding resuscitation status, withholding and withdrawing life-sustaining therapies, foregoing nutrition and hydration, palliative care and advance directives is widely recognized (ANA, 3).
The fact Mr. Abrams now lacks the ability to make his own decisions does not mean his autonomous decisions can be disrespected. To the extent that his beliefs, values and wishes are known, his valid surrogates must respect them, even if not written. You are concerned that Josh believes his father, if able to speak, would want to transition to purely palliative goals but Josh is reluctant to authorize this, for understandable reasons. Mr. Abrams has no written advance directives.
You know that this particular neurosurgeon has a reputation for deferring critical decisions to surrogate decisionmakers, even when these individuals make decisions that caregivers know are inconsistent with the known beliefs, values and preferences of patients. You also feel sympathy for Josh, who is still reeling from the news that his father will not recover, and who wants his sister’s support. When you learn that Mr. Abrams’ daughter will not be able to come to the hospital until the following week, you believe that a trach and peg plan of care is indicated even if this is not what the patient would have wanted. You have some reservations that this violates the patient’s known values, but you understand and accept that the patient is now stabilized and no longer requires critical care and that a decision must be made to ensure a timely discharge. You value being a team player. Mr. Abrams is trached and pegged and discharged and may live for months in the long-term care unit.
Your first priority is Mr. Abrams, and after talking with Josh you are quite sure that Mr. Abrams, if able, would never consent to a trach and peg placement. Understanding his prognosis, he would opt to transition to purely palliative goals. You decide to talk with Josh about his responsibilities as Mr. Abrams’ legally valid surrogate. You explain his role is to make the same decision that Mr. Abrams would make if able to speak for himself. You recommend a phone meeting with the neurosurgeon, the hospital’s ethics consultant, yourself and whomever else Josh would like to be present. During this meeting, it becomes clear to everyone that Mr. Abrams would never consent to the placement of a trach and peg feeding tube and Josh accepts his responsibility to authorize a transfer to hospice. His sister makes plans to visit as soon as possible in order to be able to see her father before his death. You know that Mr. Abrams might have lived in a long-term facility for months if the trach and peg were placed and feel comforted with your role in respecting his beliefs and values. Several nurses talk with you about your role in making this happen and you are eager to share what you did and why. You suggest that your unit schedule a meeting with the ethics consultant to talk about similar cases and the options available for professional caregivers.