A patient requested a do not resuscitate (DNR) order. Later, when the patient loses capacity, her surrogate directs staff to rescind the order. This is a surprisingly common scenario, says Robert N. Swidler, vice president of legal services at St. Peter’s Health Partners in Albany, NY.
“‘Because I say so’ is not a good enough reason. As hard as it is to defy the surrogate, the treatment team has an ethical, and in many states a legal, obligation to follow the patient’s clearly documented decision,” Swidler cautions.
Still, in some cases, surrogates have legitimate reasons to override the decision. According to Swidler, these reasons could include the patient lacked capacity at the time the DNR was requested; the patient had capacity, but did not understand what the DNR order meant; the patient later changed his or her mind, but the DNR order was not rescinded; or the patient never meant for the decision to apply under the current circumstances (e.g., if the patient is about to undergo surgery for a reversible condition). If the surrogate can substantiate any of these assertions, it is possible that overriding the DNR is the most ethical step to take. “The treatment team has to consider whether the surrogate’s assertion seems true. That’s always difficult,” Swidler notes.
The appropriateness of the patient’s decision under the circumstances is another important factor. Surrogates may demand to override a medically appropriate DNR issued with the consent of a patient who is dying.
“The treatment team should be skeptical about a surrogate’s thinly supported assertion that the patient changed his or her mind, or never meant the DNR to apply under the circumstances,” Swidler offers.
Swidler says the hospital should put a policy in writing to make clear the obligation of staff to follow a patient’s previously expressed decisions and the obligation of the surrogate to make the decision the patient would want (not the decision the surrogate would want). “A hospital should also consider creating a pamphlet that the treatment team may use with a surrogate who asks to override a patient’s prior decision,” Swidler adds.
This shows the obligation to honor the patient’s decision is not the treatment team’s opinion; rather, it is a matter of hospital policy. Surrogates cannot accuse the treatment team of taking an ad hoc approach. “It can deflect pressure against the providers,” Swidler says.
Many surrogates struggle to make medical decisions for an incapacitated patient. “There are a plethora of ethical dilemmas that inevitably arise,” says Amber R. Comer, PhD, JD, assistant professor of health sciences at Indiana University in Indianapolis. Clinicians frequently request ethics consults for specific reasons, including:
- resolving disputes between multiple surrogates about medical decisions;
- surrogates who do not appear to be acting in the patient’s best interest;
- conflicts arising from a surrogate’s desire to pursue a plan of medical care the clinical care team does not recommend;
- surrogates who need help with medical decision-making.
“The gravity of being put in a position where they are making life and death decisions can lead to emotional distress and confusion,” Comer observes.
Surrogates often wonder: “Should I do what is best for the patient? Or should I do what I think the patient would want if he or she could decide for themselves?”
“This is a particularly troubling conflict when what the patient may want would result in prolonged suffering and poor quality of life,” Comer says.
It can be ethically acceptable to override a stated wish because it is in the patient’s best interest. Some patients request aggressive interventions before a major change in their medical condition and expected outcome. “A significant change in the patient’s condition may change the surrogate’s desire to continue aggressive interventions,” Comer says.
Some surrogates ask for treatment the patient specifically indicated was unwanted. “These cases are always ethically challenging,” Comer acknowledges.
Ethicists need to discern if there is an ulterior motive. One man with severe chronic obstructive pulmonary disease (COPD) was intubated and unlikely to recover. Physicians recommended he be extubated and made comfortable. However, the man’s daughter insisted he be kept alive at all costs, contrary to the man’s stated wishes. “The patient told his physicians that if he were to decompensate, he would not want prolonged intubation and aggressive interventions if he had no chance of meaningful recovery,” Comer recalls.
Ethicists questioned the daughter further. She finally stated, “My father has always taken care of me and my two small children. We are currently living in his house and are supported by his retirement income. If you let my dad die, you will be making me and my kids homeless. I know that my dad would rather live like this than watch his daughter and grandchildren become homeless.”
Clearly, the daughter was acting in her own best interest. Nevertheless, the case was ethically challenging. “It placed the patient’s interest against the surrogates’ interest,” Comer explains.
That leaves the clinical team to determine whose interest is most important. More typically, surrogates’ request for life-sustaining care stems from being overcome by grief and fear. Some surrogates even demand invasive interventions, such as permanent intubation or a permanent feeding tube, although it is clear the patient never wanted them. “Ethics consultants can help sort through and resolve the multiple ethical dilemmas,” Comer says.
At the University of Rochester Medical Center, a recent ethics consultation involved a previously competent woman with COPD who had fallen and suffered a mild head injury, rendering her confused. She also sustained a hip fracture. “Her MOLST [Medical Orders for Life-Sustaining Treatment] indicated ‘no ventilator,’ a decision likely made in anticipation of future respiratory failure,” says Marianne C. Chiafery, DNP, PNP-BC, a nurse practitioner and clinical ethicist.
The clinical team believed all injuries were recoverable. They wondered if intubating and placing the woman on a ventilator to perform hip surgery would be ethically justifiable. The medical team expected the patient to be off the ventilator within 72 hours of surgery, as her COPD was mild.
“Her proxy indicated that the patient would want to proceed with the plan if it meant she could get back to being her usual independent self,” Chiafery says.
Surgeons performed the procedure, and the patient was extubated within 48 hours. Afterward, the patient stated her daughter and the team had made the right decision. “There must be a compelling reason to override the MOLST,” Chiafery cautions. “This should not be done lightly.”