(Editor’s note: The following is from guest contributor Barak Wolff, a senior policy analyst for the Senate Public Affairs Committee of the New Mexico Legislature and founding member of New Mexico End-of-Life Options Coalition (which you can find here). A New Mexico resident since 1975, Barak has a Master of Public Health degree from the University of Michigan and a Bachelor of Science degree from Cornell University. — KTB)
2020 will be remembered by us all. It is and will be a defining year for everyone, and it is being impactful in so many ways. There is so much uncertainty about what will happen next or where this is going next month, or next year. This pandemic experience reflects and exacerbates much of what may be perceived as dysfunctional about our US character, and it also brings out our compassion and our love of family. It inspires creativity and innovation in some while bringing out insecurities and fears in others. However it goes, we are all touched by this pandemic everyday — rich or poor, insiders or outsiders, rural or urban, etc.
For those of us who have been actively engaged with issues of death and dying in recent years, perhaps our current reality offers an unprecedented opportunity to move the conversations forward. Maybe this is an opportunity to enhance our own thinking about our mortality and somehow share those thoughts with our colleagues, families, neighbors, health care providers, and even policy makers. Our issues are now part of the non-stop news coverage. We are inundated with daily infection rates and death counts from this coronavirus. We may have seen grim pictures of bodies stacking up in hallways and refrigerated trucks in hospital parking lots. We bear witness to the pleading testimonials from fearful, mentally and physically exhausted healthcare workers and first responders that reveal their humanity, heroism and self-sacrifice. It sometimes feels endless.
Most heartbreaking of all have been the vivid stories of absolute despair as some families don’t even have a chance for final goodbyes with loved ones who die alone, often sedated, and struggling for breath on ventilators with medications that just can’t keep up. It may seem a bit less intense now than it was in New York City back in April, but a version of it still goes on throughout our country. Crisis treatment decisions are made everyday, some by patients and families, some by clinicians and ethicists deciding who gets treatment, for how long, and who pro-actively selects or receives comfort care in lieu of the ICU. Such chaos both highlights and challenges our mission of living fully and having a good death of our choosing. And this pandemic may be far from winding down with winter just ahead.
In these trying times of COVID-19 when some hospitals may be full and access to health care is a challenge, it is more important than ever that each of us be clear about our wishes and our directives for advanced treatment and end-of-life care. Where outbreaks occur and hot spots erupt, health care resources may be stretched thin and each life and death decision is critical. Advance care planning may provide guidance to our loved ones and health care providers about our choices for treatment and/or if and when we might opt for comfort care.
So, while we are spending more time isolated in our homes and have some of our busyness on pause, perhaps this is the perfect time to make or revisit our own advance directives to ensure that they still reflect our values and our innermost and honest feelings about what end of life options we might choose. Maybe it’s a good time to think about dementia, an insidious disease that could befall any of us, or our loved ones, at any time. There are several excellent new tools to help assess one’s values specifically about the prospect of losing one’s sense of self through a generally slow and debilitating decline. Considering the progressive stages of dementia and figuring out where we might draw the line as to whether or not life is still worth living is a worthy undertaking and a deep dive into our true feelings about the meaning of life and death.
As the pandemic blossomed in the spring and the numbers of deaths kept multiplying, we all learned more about ventilators and the tough road that sedated, intubated, struggling patients must travel, mostly alone, with slim chances for a good outcome. Several versions of specific respiratory life-support decision trees were developed to help clinicians talk with patients and families about their choices, hopefully before definitive care was initiated. Model COVID-19 addenda to advance directives were developed and encouraged, specifically for elders or those with underlying conditions, but certainly appropriate for all of us to consider.
Thinking through these possibilities reminds us that the choice to opt for comfort care rather than treatment when the time is right can provide peace of mind, the opportunity to say our goodbyes, and a calm, even peaceful, death. It is, after all, our right to self-determination. It is our choice to make, if we care to.
Finally, in spite of all the uncertainties as to how and when we will return to “normal” (or perhaps a new normal), this is a good moment to reflect about how all of this might impact end-of-life options in our country and our efforts to enhance access to a range of choices. Whether it’s aggressive treatment, stopping or not starting care, hospice comfort care, VSED, MAiD, or self-deliverance, it’s worthy of introspection and sharing our insights and understandings with others. Perhaps this real-time global pandemic experience actually furthers our cause by highlighting both the preciousness and fragility of life as well as the inevitability of death. It encourages all of us to explore our values, share them with our loved ones and live our lives to the fullest until our time has come. And then we should have the opportunity for that death to be as we choose, whether fighting for one more breath or choosing a more peaceful path.
I appreciate Barak’s description of the particular issues and challenges of managing to have a good death during the Coronavirus pandemic. It’s especially important that my Advance Directive and Medical Power of Attorney make clear that I want the choice to opt for comfort care if I’m faced with invasive treatments with poor outcome prospects.