Learning to Embrace Empowerment in the Last Chapter of Life

Learning to Embrace Empowerment in the Last Chapter of Life
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It was Georgia's* 90th birthday party. Unlike several of the other guests (who were at least two decades younger), she was lively, bright and full of optimism. While her party guests shared their fears of disease and economic disaster when they reach the age of the new nonagenarian in their midst, Georgia laughed it off. "There's really nothing to be afraid of," she winked. "The ultimate empowerment is living each day to the fullest, having determined how the end of your life will take place."

Later, as she cleaned up and loaded the dishwasher, a close friend of hers, who happens to be a hospice nurse on staff with the VNSNY Hospice and Palliative Care Program where I work, asked her to explain things a bit more. "I can't stop aging, and while I take good care of myself, I don't know if or when I might get terminally ill," Georgia explained. "But it doesn't mean I'm powerless. I don't have to spend my days wondering 'what if.' I made sure I discussed ahead of time with my family what's important to me. That gave me such peace of mind that the last chapter of my life will be the way I want it, and it also gave my loved ones guidance on how to make decisions on my behalf."

Our nurse was impressed by this forthrightness -- it's not often that we encounter such acceptance in our day-to-day hospice work. Georgia must've read her mind, because she continued, "I looked around and saw that too many people die in a manner they would not choose, hooked up to machines or unable to express their needs or preferences because they'd been afraid to prepare when they had the chance. I was determined that wouldn't happen to me. After all, I'm not the only one who would suffer -- think of the toll it would take on my family and friends. I couldn't put them through it."

When I heard this story, I knew that Georgia was onto something. A national survey conducted by The Conversation Project, a public engagement campaign that aims to have every person's end-of-life wishes expressed and respected, reported that more than nine in 10 Americans think it is important to discuss their wishes for end-of-life care; however, only three in 10 have actually had these discussions. The Conversation Project, co-founded by Pulitzer Prize-winner Ellen Goodman, launched in collaboration with the Institute for Healthcare Improvement and supported by Cambia Health Foundation, offers people the tools, guidance and resources they need to begin talking with their loved ones, around the kitchen table, about how they envision the end of their lives.

One of the first steps for anyone, young or old, to prepare is an advance directive. An advance directive is a type of written or verbal instruction about health care which is to be followed if a person becomes unable to make decisions regarding his or her medical treatment. There are four types of advance directives, each enabling an individual to convey end-of-life wishes, in the event that he or she is unable to communicate:

  • A Health Care Proxy (also known as a Health Care Power of Attorney) allows you to appoint a person you trust as your health care agent who is authorized to make medical decisions on your behalf.
  • A Living Will allows you to document your wishes concerning medical treatments at the end of life.
  • A Do Not Resuscitate Order (also known as a DNR) is a physician's order that directs health care professionals and/or emergency medical personnel to refrain from performing cardiopulmonary resuscitation (CPR), if your heart or breathing stops. [A DNR is only completed when someone is chronically or seriously ill.]
  • An Organ Donor Designation allows you to document your wishes regarding donating your organs after your death. Even if you have indicated that you would like to be an organ donor, your family or health care proxy/agent must give their permission in order for the donation to take place.

Before you prepare your advance directives, it helps to think about your values and beliefs, discuss how you see the end of your life's journey and to get information from your health care provider on the types of life-sustaining treatments that are available in your state. Once you decide what kinds of treatment you would want or would not want, a trusted family member or friend can help you prepare your advance directives. Although you do not need a lawyer to prepare the documents, it's a good idea to make sure you have a neutral party review your advance directive to make sure it accurately reflects your decisions. Upon completion, share it with your physician and loved ones so they're aware of your specific requests and appropriate referrals and arrangements can be made.

Decisions about end-of-life care are deeply personal, but they are make all the difference when it comes to living a powerless or empowered life. Most importantly, if you tackle "that conversation," like Georgia, then you can really focus on making every day count.

* Some personal details, such as names and dates, are changed to retain privacy.

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