Phyllis had recurrent cancer of the cervix. She’d had a pelvic exenteration, which failed to heal properly, and had developed 2 fistulas and chronic infections. The resulting wounds were stage 4, and though theoretically capable of healing, they had not improved and were a chronic source of infection. It was an unbreakable loop. Her physician and nurses repeatedly suggested it was time for hospice, but Phyllis was clear in her goals. As long as she could interact with family and friends, she wanted to continue dressing changes and antibiotics.

Steven, an 80-year-old gentleman, was confused but logical at the same time. He’d been admitted after a fall at home and was found to have a mass in his colon. His capacity for decision making was suspect as he had paranoid ramblings and easily lost focus during conversations. His daughter was his DPOA.  She wanted to let him have a say in making decisions. Given his level of confusion and the inherent risk of surgery, sending him home without surgery or treatment was a reasonable option. Everything was moving in that direction, and he and his daughter had a hospice info visit to find out about hospice and make arrangements.  During the hospice info visit, Steven said, “But if I don’t have surgery than it is only going to get worse.”

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In each of these scenarios the patient/family faced a juncture in what their care would include moving forward. The sense of wanting to “make the right decision” implied that there was 1 right decision. How do we, as nurses, address these complicated choices when we are asked what we think they should do?

A common thread in each example was confusion over focus as a result of a change in the course of their disease.

For Walter, his family was focused on the completion of his XRT in spite of the fact that his condition had changed. The destination they sought and expected, a full course of XRT, was sidelined and their goal was completion of the treatment he had begun. To what end? Helping them understand that while he appeared to be physically strong, his confusion was actually an ominous sign.  And allowing them to express their concerns while reminding them of the bigger picture helped them to let go of XRT.

For Sheila, the purpose of having a biopsy was so her family would not second guess themselves later.  Having a definitive diagnosis was not directed toward treatment but rather toward providing information to her children. Sheila was able to tell her children it did not matter if her diagnosis was confirmed by biopsy, she did not want treatment. To what end, then, was the information from a biopsy going to make a difference? Establishing that the information would not change her decision helped ease the burden on her children.

In the first 2 cases the shift was in understanding what the difference would be by not doing something—not completing XRT and not performing a biopsy. In the next 2 scenarios, the focus was on the patient making a choice that did not fit with the recommendations.

Phyllis was tired of having to explain her reasons for refusing hospice. Going home on hospice meant stopping antibiotics and the dressing changes could not be done 2 to 3 times per day as they were in the hospital. She was clear on her choice.  She knew she was going to die but wanted as much time as possible. Eventually she made the decision to go home on hospice.

And finally, there was Steven. He was clear enough to understand what would happen if he did not have surgery. He and his daughter agreed to surgery feeling that it was a step toward preventing an obstruction. His daughter said having surgery was a case of, “One and done.” Neither she nor her father thought chemo was something they would consider.