By Kim Callinan
Thousands of Americans have died from coronavirus, with countless heartbreaking stories. Many families have been separated from a loved one who dies alone in a hospital bed. Health systems are making unfathomable decisions about rationing the limited supply of ventilators. Families are left to make spur-of-the-moment, life-altering decisions about the care of a loved one, despite having never discussed their loved one’s preferences.
There is an unprecedented urgent need for people to engage in informed, educated end-of-life care discussions. If more individuals take charge of their end-of-life care wishes, fewer doctors and loved ones will be forced to make gut-wrenching, life- and death-decisions for coronavirus patients.
That is why on April 16, National Healthcare Decision Day, Compassion & Choices is calling on Americans to take charge of their end-of-life care plans. This call to action is not limited to completing an advanced directive and identifying a healthcare proxy who will fulfill your end-of-life care wishes if you are unable to speak for yourself; it’s also about contemplating the care you would want if you contract the life-threatening coronavirus.
Unfortunately, there is no one size-fits-all answer to end-of-life care decisions. A person who is already terminally ill may make a different healthcare decision than a healthy, young person. Likewise, some people may value quantity of life and others quality of life. Either way, people should be contemplating questions such as:
If I begin to have difficulty breathing from coronavirus, would I prefer to be in the hospital with immediate access to state-of-the-art, life-saving interventions and around-the-clock medical professionals, but isolated from my loved ones? Or would I want to explore with my healthcare provider whether I can be cared for in the comfort of my home?
If my disease progresses and less invasive treatments are no longer working, do I want to go to the hospital and attempt additional life-saving treatments? Or would I prefer to forgo life-prolonging treatments and instead choose comfort care, so that I can die at home?
If I end up at the hospital, do I want the doctors to attempt to extend my life using mechanical ventilation?
With mechanical ventilation, you are put into a medically induced coma, a tube is placed down your throat, and you remain on life support until you are able to breathe on your own. At least half of COVID-19 patients who require ventilators don’t survive; the rate of survival is lower for older people, those with other health conditions and the longer you are on the ventilator,
Do I want doctors to attempt to restart my heart through resuscitation?
During CPR, you receive compressions (pushing) on your chest, forced breaths, and perhaps electrical shocks and drugs. The procedure sometimes results in damaged or broken ribs and/or punctured lungs. If your heart and breathing are stopped for a while, brain damage may occur. After CPR, more likely than not you will need to be on mechanical ventilation and moved to the ICU. Research suggests that only 10-20% of all people who get CPR will survive and recover enough to leave the hospital. For chronically ill elderly patients, fewer than 5% will survive long enough to leave the hospital after receiving CPR. An even smaller percentage are able to resume pre-CPR functioning.
CompassionAndChoices.orgprovides free end-of-life care fact sheets and planning tools to help you navigate your care options, so that you can die on your own terms, including a COVID-19 specific planning guide. The only wrong answer with end-of-life care planning is failing to act. Taking action now will reduce the guilt and guesswork from caregiving for your loved ones and decrease the likelihood you will needlessly suffer when you die at life’s inevitable end.
Kim Callinan is President & CEO of Compassion & Choices, the nation’s oldest and largest end-of-life care non-profit advocacy organization. Compassion & Choices advocates for passage of the Delaware End of Life Options Act (HB 140), which would authorize medical aid in dying in Delaware, and is awaiting action by the House Health and Human Development Committee. This Act would permit a terminally ill adult Delawarean who is mentally capable of making their own healthcare decisions, as confirmed by two physicians, to request and self-ingest medication to peacefully end their suffering if it becomes unbearable.