Preparing an Advance Directive: Make Your Wishes Known

 

By Christina Johnson   |   April 19, 2018

If you were in a coma with little chance of recovery, would you want to be kept alive on a ventilator? What if you had a stroke and could no longer talk or feed yourself. Would your life be worth living?

As part of National Health Care Decisions Week, April 16-22, UC San Diego Health is encouraging people in our community to talk with family and loved ones about what gives their life meaning and their wishes for end-of-life care.

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These discussions will help ensure your wishes are respected. They will also help loved ones honor your choices without doubts or guilt.

"We want people to have conversations about what brings them happiness, as a starting point for end-of-life care planning, " said Cassia Yi, MSN, a clinical nurse specialist in cardiac intensive care at UC San Diego Health. "What can you not live without? Where do you draw the line in terms of medical interventions and loss of independence?"

There are no right or wrong answers.

"It's about making your wishes known so that when the time comes, your loved ones can honor and respect your values," Yi said.

The process may also include the creation of an advance directive, a legal document that designates a health care proxy who has authority to make end-of-life care decision for you, should you become incapacitated.

An advance directive may also stipulate medical interventions such as a feeding tube or breathing machine that you would be willing or unwilling to include in your care under different scenarios.

Your health care surrogate, family and loved ones, and your doctor should know your wishes and have a copy of your advance directive, Yi said. The advance directive should also be included in your medical record.

It's never too early to plan.

"It's a misconception that end-of-life care planning is only for the terminally ill or elderly," Yi said.

Catherina Madani, PhD, RN, a nurse at UC San Diego Health, has discussed end-of-life planning with her six-year-old son and husband, as a family. "We played a game in which we each listed the things that matter most to us, things we don't care about, and things in the middle."

"It was very surprising to see what my son and husband chose," Madani said. "I am fiercely independent, but they are less so. … My priorities are to be able to enjoy food and conversation. They are more interested in being physical and being with friends."

"These conversations are for the legacy of our family," she said. "They are not doom and gloom messages. We are giving each other the assurance we know what we each value and will do the best we can for them. It’s very powerful. Ultimately, it enables closure and more positive memories of loved ones."

Armed with an advance directive, medical professionals can also act with confidence that their interventions are aligned with the patient’s end-of-care wishes.

"If you don't have an advance directive, medical professionals will take a conservative approach, which means we do everything in our power to keep you alive," Madani said.

Intravenous medications to keep the heart pumping, a ventilator to compensate for lung failure, dialysis if the kidneys are not functioning, a feeding tube — many interventions may be used, even on a patient with a very poor prognosis.

"If a patient is agitated or confused, we may need to tie their arms down to keep them safe and prevent them from pulling out their feeding tube or IV," Madani said.

"It is a huge burden to see someone you love suffer, and to wonder if it was what the patient would have wanted. It takes a toll on us all," she said.

"With an advance directive, loved ones and the medical professionals can work together for the benefit of a patient, as an individual," Madani said.

"It is possible to have a beautiful death," Yi said.

 


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