Stories From Some Affected by COVID-19

Update April 7, 2020

On Monday, April 6th, it was reported that 10,000 Americans have died of COVID-19; almost half of those deaths occurred in New York State. COVID-19 stories from New Yorkers can be found in local newspapers, online, and elsewhere. We also continue to see television interviews with desperate health care professionals who lack the necessary protective equipment they need to keep caring for New Yorkers.

Many of these stories focus our attention on the particular fears about dying that are unique to these very difficult times. Gail Lennstorm spoke for many of us when she said her greatest fear is not about dying - but of dying alone and without adequate symptom management. (Allow COVID-19 Patients the Dignity of Not Dying Alone by Gail Lennstrom). This fear comes from hospitals, nursing homes, and other long-term care settings imposing strict "no visitor" policies to try to protect vulnerable patients, residents, and their caregivers, because we currently know so little about who is infected with this wretched virus.

I have also heard directly from New Yorkers who have called us seeking guidance. As some of you may know, those who contact our consultation service want accurate information about 'decision points' that will likely lie ahead, and they want to be prepared to make those decisions in a thoughtful and well informed manner. They also want to begin talking to the important people in their lives about choices they are considering, and to collaborate with their clinicians in a 'shared decision making' model of care. However, doing so in the face of COVID-19 is a special challenge.

I recently heard from the 'big sister' of a younger brother who had experienced a devastating escalation of his terminal illness. He wanted to take steps to control the timing of his death. She lives in New England, and he lived down South. Her plan was to join him in a country in Europe with legal medical aid in dying. He had completed all the paperwork required by this country's protocols. But then the virus shut down the airports in the country to which they planned to travel. Now she couldn't be physically with him. Her brother called me and we spoke for some time. She told me it helped, and ultimately he managed to achieve his desire to control his own death.

Another couple, with whom I have been speaking for some time, told me they were now in "lock down" in their assisted living residence just outside of NYC. She has an early stage of dementia and plans to take preemptive steps to hasten her death by forgoing all oral intake. I have spoken with their daughter who worries about them both, because her dad is also unwell. She is terribly upset that she can't visit them. I don't know whether her mom will be able to achieve her current goal, but they have completed our 'dementia directive.' Thus, even if she loses decision-making capacity before implementing her choice, she will at least have documented her wish to not be hand fed when her disease becomes advanced and she loses the ability to make decisions or feed herself.

There is a tremendous amount of anxiety caused by this pandemic - how long will it last, who will it impact next, and how will we all manage? Such uncertainty adds a great amount of stress to the lives of New Yorkers. But we New Yorkers are resourceful and resilient - as we demonstrate by clapping and cheering together each night at 7 pm to thank our wonderful health care professionals, and as we regularly check on and shop for our elderly neighbors. Some of us are even learning to be patient as we stand in line - 6 feet apart - and wait for our turn to enter our favorite grocery store. We are staying in closer touch with loved ones and friends, even if we can't hug them, and we will get through this - together.

Thanks,

Judith Schwarz, PhD, RN Clinical Director, End of Life Choices New York