Where to begin…? Like many of you, wife Leah and I are homebound on our ridge top in Tesuque, safe, well fed and basically healthy for now…as far as we know. We count our many blessings as we are trying to be compliant with all the new guidelines, following recommended precautions, and only going outdoors for exercise, fresh air, and as a last resort to obtain necessities. At the same time we are deeply appreciative of the many folks who selflessly accomplish their essential daily jobs serving the rest of us with care and grace. Now that we are 2-3 weeks into this new world of social distancing, we try to use our time “well” for connecting with family and friends, exercise, daily chores and living as joyfully as possible. At the same time we must balance that with the 24/7 onslaught of information, data, warnings, recommendations, and compelling stories and images. With the strong likelihood of things getting much worse and extending for weeks, and probably months, before any return to “normalcy”, we soldier on as this is the world we live in for now…a time of great uncertainty for all of us.
For those of us who have been actively engaged with death and dying in recent years, perhaps our current reality offers an unprecedented opportunity to move the conversation forward, to enhance our own thinking and that of our families, neighbors, health care providers, and even policy makers. Our issues are now part of the daily news coverage. We are inundated with the daily infection rates and death counts from this coronavirus, with grim pictures of bodies stacking up in hallways, refrigerated cargo trucks and even churches. Each day we bear witness to the pleading testimonials from fearful, mentally and physically exhausted healthcare workers and first responders that reveal their heroism and self-sacrifice.
And most heartbreaking of all are 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 with this virulent virus. Hospital administrators, clinicians, and bio-ethicists are forced to privately and sometimes publicly speculate about inevitable shortages and the need to revisit or develop policies and guidance about how critical life and death decisions will be made…who is afforded the opportunity to receive treatment and possibly survive and who receives comfort care as they rapidly succumb to the virus? All of this chaos challenges our mission of living fully and having a good death of our choosing.
So…what can we do as individuals and as advocates for a full range of end of life options being available and accessible to all. As noted elsewhere in this Monthly Update, April 16th is National Healthcare Decisions Day (NHDD), the annual designation created to inspire, educate and empower the public and healthcare providers about the importance of advance care planning. NHDD is an initiative to encourage patients to express their wishes regarding healthcare and for providers and facilities to respect those wishes, whatever they may be, as closely as possible. Given our current coronavirus pandemic, these issues of healthcare decision-making have never been more front and center.
Central to these healthcare decisions, is the basic and fundamental right to “self-determination” as guaranteed to all of us here in New Mexico through the Uniform Health Care Decisions Act (UHCDA) enacted in 1995. The UHCDA empowers each of us to decide what medical care we want to have, from whom, where, when to start care, and when to stop treatment in favor of comfort care. We can express these choices/desires through an advance directive and by appointing a health care agent or decision-maker to represent us if we lose capacity to speak for ourselves.
Particularly in these trying times of COVID 19 when hospitals may be full, access to health care a challenge, and this serious, life-threatening illness can overtake us at any time, it is more important than ever that each of us is clear about our wishes and our directives for advanced treatment and end of life care. Health care resources are stretched and providers are at personal risk, so each life and death decision is critical. Advance care planning improves our chances of having the kind of death we seek, and gives clear guidance to health care providers about our choices for treatment and/or if and when we might opt for comfort care.
So, while we have this pause in our busy lives, perhaps this is the perfect time to accomplish and/or revisit our advance directives to ensure that they still reflect our values/priorities and our innermost and honest feelings about what end of life options we might choose. And perhaps this is a good time for us seniors to go a step further and download a copy of the NM Medical Order for Scope of Treatment (https://www.nmmost.org) and consider completing it, even if for the moment we are healthy and have no major underlying illnesses or risk factors. We know that those of us over 60 are at high risk of a serious infection from COVID 19 that can quickly become deadly. Of course, unlike an advance directive, the MOST is a medical order and is intended to be discussed with one’s provider and signed by both parties. But even unsigned for now, a completed MOST can be an addendum to your existing advance directive that gives additional clarity about your choices.
In addition, for those with underlying conditions, symptoms, or a possible exposure, the Colorado Center for Patient Centered Decisions at the University of CO School of Medicine has developed a one pager entitled, “Life Support During the COVID Pandemic” which is worth checking out (https://patientdecisionaid.org/wp-content/uploads/2020/04/3-19-2020-COVID19-life-support-machine-V10.pdf) It is simple, clearly written and provides a set of choices that may help clarify one’s own values about respiratory life support options and thus be helpful to medical providers…particularly if ventilator rationing becomes a reality.
Another excellent website with a variety of helpful tools to assist both individuals and healthcare providers explore end of life decision-making during this pandemic can be found at Respecting Choices: https://respectingchoices.org/covid-19-resources/#planning-conversations . These thoughtful resources remind us that for some, the choice to opt for comfort care rather than treatment can provide peace of mind, the opportunity to say our goodbyes, and a calm, even peaceful, death. It is our right to self determination…it is our choice to make.
And finally, in spite of all the uncertainties as to how and when we will return to “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 medical aid in dying for those who choose it. Perhaps this real time global pandemic experience actually furthers our cause. It highlights both the preciousness and fragility of life and 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 bodies fail and we decide 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. The majority of folks want the right to make that choice and we’ll continue to make progress in that direction.
Barak is a new member of the SF Healthcare Network but has been involved in our issues for many years as a mostly retired public health advocate and a founding member of the NM End of Life Options Coalition. For more information on these important issues of advance care planning or to set up a chat, contact Barak at firstname.lastname@example.org.