They provide advice to patients and families who find themselves in ethically charged situations surrounding care at Upstate University Hospital. Disagreements having to do with end-of-life care are one of the most common reasons for a consult.
“When the patient has mental capacity, there’s no argument. Patients are allowed to make what you could consider to be bad decisions if they have capacity. It’s when they lose capacity and you have to figure out ‘What would this patient want?’ where it gets muddy,” says Curran.
He and Olick tell about a muddy situation:
A 63-year-old woman arrived at the emergency department with sudden respiratory failure. She had lung cancer that was so advanced she had to be placed on a breathing machine. Chemotherapy was not an option. Her diagnosis wasn’t a surprise; the woman had known for 10 months about a mass in her lung and ignored treatment recommendations.
Because of her condition, her lucidity waned. The woman’s ability to make decisions would come and go.
When she was lucid, she indicated she wanted to go home to die in peace.
When she was not lucid, the person she had selected as her health care proxy, her husband, insisted that she wanted life-sustaining measures.
Sometimes when she was lucid and her husband was present, the woman would defer to him.
So the ethicists sought to get family members and caregivers in the same room at the same time, when the woman was lucid, to discuss her wishes. They talked about how she neglected to seek care for 10 months, and how that may have foreshadowed the type of care she really wanted.
“The principle is to respect patient autonomy,” says Curran.
Olick points out that “it’s also important to understand the husband’s role as health care proxy only has force if she lacks capacity.
“It’s her wishes that control what happens. He doesn’t have authority to override that.”
In the end, the woman died in the hospital before things could be settled.
Curran says the situation illustrates the importance of choosing a proxy who will respect your wishes. “In this case, she appeared to have done a poor job of selecting a health care proxy because he appeared to be acting in opposition to her wishes.”
Ensuring your end-of-life wishes are followed
- It takes foresight and courage to confront the future possibilities of your mortality — and to be open about that with the people who care about you most.
- Carefully choose a proxy (someone who will speak on your behalf if you are incapacitated) who will be able to bear the burdens of the decisions that may be placed on him or her.
- In addition to completing the proper paperwork, conversations are important. Consider looping in multiple family members or loved ones, plus your doctor.