By Nancy Dudley,,
My mother passed away in March of this last horrible year. She had fought cancer for over 20 years. As a former ICU nurse and as an educator and palliative care researcher in health care for over 40 years, I knew my mother's wishes for end-of-life decisions and the medical care she wanted. The most important thing to her was not to suffer. Fortunately, I was able to be at her bedside to honor that wish, helping her pass into the next world in comfort and at peace.
Unlike my mother, however, many people don't have an advance directive – also called a living will – that lets their loved ones know their medical wishes. And with the COVID-19 death toll eclipsing 350,000 in the U.S. alone, the grim reality is that they should.
My mother was in the U.S. Cadet Nurse Corps at the University of Washington during World War II. She was a strong leader who for many years saved teenage lives as a school district administrator and high school nurse. After retirement, she was a hospice volunteer who helped young parents with their terminally ill children. She would advocate for everyone to have a frank and honest discussion with their family members about honoring the wishes of an ill and dying loved one.
Unfortunately, only about a third of U.S. adults had an advance directive in recent years, according to one research analysis. This type of legal document can give instructions about what kind of medical care you want if you become seriously ill and are at the end of your life. You can specify the types of medical treatments you do and do not wish to receive, and can designate someone who will make sure that your health care decisions are followed.
As the coronavirus pandemic continues to ravage the U.S. and patients are filling ICU beds, you might not think you need an advance directive because you are young and healthy. Yet COVID-19 can strike a person of any age or background: While those at higher risk of becoming seriously ill due to COVID-19 include the elderly and those with chronic conditions such as obesity and diabetes, COVID-19 also has killed or seriously sickened younger people, including athletes.
Decisions that can be made regarding end-of-life care include if a person wants everything possible done to keep their vital organs working, such as placing them on a ventilator to support breathing or initiating dialysis for failing kidneys. There also are decisions to make if the heart stops beating due to cardiac arrest – whether a person wants to receive CPR or defibrillation. In my mother's situation, she wanted a "do not resuscitate" order and no CPR or electric shocks. She told me she lived a long life and fought metastatic cancer for over 20 years, and wanted to pass away without suffering and with "comfort care," which focuses on symptom control and pain relief. These are decisions to make after open discussions with loved ones, yet you can modify an advance directive document.
As a resource, AARP offers links to free, downloadable advance directive forms for each state. For some states, living will and health care proxy forms are combined into one document. For other states, the forms are separate. Once completed and signed or notarized, depending on your state's requirements, these documents are legally binding, though again, you can legally revoke or amend them. It's not that hard. Look at completing an advance directive as a belated holiday gift to your family this season.