Chris Evans and daughter Andrea

Christine L. Evans, RN, MSN (right), with her daughter, Andrea.

Talking with young adults about advance care planning

Andrea, my youngest daughter, was scheduled to have a tonsillectomy a few months after her 18th birthday. At 11:00 the night before surgery, she woke me up with an urgent request.

“Mom, before I go into the operating room I want to complete an advance directive.”

Let me back up for a minute.

As a nurse educator working for a large healthcare system, I have facilitated numerous advance care planning education programs over the years. To say my three kids grew up in a household comfortable with having “the conversation” is an understatement.

My kids were exposed to the critical importance of the advance directive at an early age. Over a 10-year period, my husband and I coordinated the care for both of his parents as they lived with and died from Alzheimer’s disease. Thankfully, both of his parents had advance directives that clearly outlined their wishes for care while naming my husband as their decision-maker. These clear instructions were not lost on my children, as they saved our family from the possibility of additional emotional suffering, as well as potential financial losses from care continued beyond what his parents would have wanted.

When my children became young adults, I talked with them openly about three major court cases that would have been averted had there been an advance directive: Karen Ann Quinlan, Nancy Cruzan and Terri Schiavo. What was remarkable about all three cases is that they were not about people in old age, they were about young women in their 20’s who ended up in serious medical situations where they were unable to speak for themselves. The families of all three women had intense disagreements about their daughter’s health care. Ultimately the judicial system intervened in a very public way in what should have been a private family decision.

have_in_commonWith that history in mind, I shouldn’t have been surprised when my 18-year-old asked me to get out of bed and walk her through an advance care plan late at night.

As a young girl, Andrea once attended a community event that honored the donor families and recipients of organs. A few years later, she saw the powerful change in a cousin’s life after he received an organ donation to replace his lungs that were damaged by the ravages of cystic fibrosis. These experiences were on Andrea’s mind when she indicated that she wanted to be an organ and tissue donor in her advance directive.

On the morning of her surgery, Andrea and I had planned to stop at a local notary public on our way to the ambulatory surgery center; however, we received a call asking for us to come in early—her surgery had been moved up due to a cancelation. No notary offices were open in those early hours, so we headed straight for the surgery center.

After checking in, the medical team was ready to prep Andrea for her surgery.

“Mom, I can’t go into surgery until I sign my advance directive,” she said. “If anything happens to me, you know what I would want. I want you to be my decision-maker.”

The admitting clerk suggested we ask two of the parents in the waiting area to witness her signature on the document. They both readily agreed. The document was signed, witnessed, and scanned into her electronic medical record, and back she went for what was, happily, an uneventful surgery with a full recovery.

Find tools to talk about and complete advance directives here.

Christine L. Evans, RN, MSN, is a clinical educator for Dignity Health in Sacramento, California, where she teaches basic life support, neonatal resuscitation, palliative care and POLST. A registered nurse since 1976, Evans has worked in a variety of settings including medical surgical nursing, neonatal intensive care, and as a clinical nurse specialist in a women’s hospital. She is co-developer of the California POLST Education Program and the POLST program for pediatric care teams.

3 Responses to “‘Wake up, Mom! I want to complete an advance directive.’”

  1. Anita Holmes

    Waiting until they’re adults to have The Talk about advance care planning, quality of life, and healthcare advocacy is like waiting until the engagement announcement gets published in the paper to have The (other) Talk with your kids. Kids should be raised with the values of quality of life, advocacy for self and others, and human dignity a part of their family and at-home culture. It would be super of we could get our faith communities to discuss this as well. Then, when our children are old enough to have their own legally documented advance directives, we’ll know what they are, and the paperwork will be a mere formality.

    Reply
    • Great points, Anita, and thank you for mentioning the faith community.

      As a matter of fact, CCCC is in the middle of working on a faith leader outreach program RIGHT NOW and we will be putting information about this project on our website real soon, including a toolkit for working with the faith community on advance care planning.

      Are you on our email list? – Liz

      Reply
  2. Dawn Flatt

    Great article!
    Do you know of any information out there on HCPs for a young, healthy population? If there is a need for a HCP for that population it’s usually during an emergency, which leaves supports unsure of what to do during a time of shock and distress. Having a HCP could help in a situation like this.
    We will be holding an Advanced Care Planning Event at our company in April for our employees in hopes of shifting the image of Advanced Care Planning as something that is only for those who are sick, those at the end of life and/or the elder population. We feel people will be more likely to fill out a HCP if they felt it applied to them. Any suggestions would be greatly appreciated!

    Reply

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