A year ago, my health was deteriorating, and I was struggling to figure out what was wrong. I was steadily losing my ability to walk up any sort of incline, much less a hill. After tinkering with asthma meds and taking a pulmonary function test, I visited my cardiologist. My heart, it seems, was skipping beats and losing its oomph.
I got a pacemaker in June, along with a new Rx for heart failure (the better kind of heart failure, but still not curable). By fall, I was doing pretty well. But when I saw my cardiologist in October, I changed my POLST (Physician Order for Life Sustaining Treatment) form to DNAR (Do Not Attempt Resuscitation) and no-ventilator. Then in January, news of a new coronavirus seeped into the news. As stories began to tell of who was dying from and who was living through this illness, I began to contemplate what care I might want if I became sick.
I’m 75 years old. At this age, my chances of dying from this virus are much higher than for younger people but not as high as for people over 80. I have two strong motivations for wanting to survive if I get sick: My husband is still alive, (I think he needs me); and I want to vote in November. Also, I still really enjoy nature! and friends!
When I changed my POLST form last fall, I was thinking in terms of a heart that does not generate any beats on its own. It’s a dud. I was also thinking of my dad who had heart failure, which is not a nice way to die. Extending my life with machines that are uncomfortable and can’t cure me makes no sense (to me). “AND” (allow natural death) made sense. But now? Even people my age can and do recover from Covid-19.
So yesterday, I discussed this with my primary care doctor. What I want, I think, is to just die if my heart stops, but accept a ventilator (should one be available) if I contract the virus and need it for a period of time. By the end of our conversation, I was more confused than ever. She talked me through various situations where CPR might be successful even for me. And the dividing line between “yes, ventilator” and “no feeding tube” was not as clear as I wanted it to be. Apparently, people who take time to recover might need a feeding tube for some of that time, but they can still recover. I have to wonder what shape they’re in after this experience, but maybe we don’t know that yet.
After a generously long phone appointment, I told my doc that I didn’t know what to do. We didn’t make any changes on my forms, (actually, we can’t because I can’t go in to the clinic for her signature), but she did document our conversation.
I pity the health care workers who would have to try to sort out my wishes if I do get sick. Plan of attack for now: Stay Home, Stay Healthy. There are so many aspects to this pandemic that never crossed my mind before we found ourselves in the middle of it. Plus, we’re still learning how the illness plays out over time, and providers are bravely trying out treatments that might help their patients. I’m fortunate to live in an area that might be flattening the curve already, so our hospitals are not completely overwhelmed (that could change, of course).
Some people find Advanced Directives and POLST forms straightforward, but I’m not one of them. It just seems to me that there are way too many possible health care scenarios to anticipate, and our choices might not be consistent over the various situations. I will say this one thing: if I’m not able to make my own choices, any family and friends who would speak in my stead, No Guilt! You can’t make a “wrong” choice. This just isn’t black and white; right and wrong don’t apply; thanks for being there for me. You’re the best.
Sauk City Blog 
Grace, you’re the best! You write so clearly about how complex and difficult everything has become with this virus! What’s a person to do? Stay home, stay home, and stay home! This too shall pass but I venture our world will never be the same again.
I was perplexed by the choices on the form until I realized that they only apply if and when I can’t speak for myself, that is, unconscious and perhaps in need of CPR. In the latter case, my brain would already have been deprived of oxygen for several minutes with little chance of my ever again being fully me. On the other hand, if I’m conscious, the POLST is irrelevant; I can speak for myself whether I want to go to the hospital, have surgery, respirator, feeding tube, or whatever. So in the end, I checked the POLST box for comfort care, period, because it would only apply if I were already pretty far gone. But that’s me …
BUT, the present pandemic adds a new urgency to end-of-life decisions. If there is a bed shortage, as predicted, would I, as an elder, be ethically justified in grabbing one? Soon (if New York is any guide) we may be in a triage situation, both for beds and ventilators. Personally, I don’t want medical people having to deal with that horrific decision on my account. So I have opted to specify no hospitalization. Later, when things ease up, I may alter my medical directives. But for now, during this crisis, I prefer to reserve hospital beds for younger people with children and productive lives ahead of them.
Fortunately, we are not New York. Our “curve” is much better than theirs at this point in time. So I am comfortable with my decision. The “Who should live?” question is always interesting if we’re dealing with Trolley scenarios; it’s even interesting in a pandemic. During the course of my life, I’ve spent time in deep depressions when death seemed appealing. Ultimately I decided that my life is worth living, and I’m still of that opinion. These directives (POLST is generally for EMTs, but a comparable form is in my medical chart) assume the availability of treatment options. If beds or ventilators are scarce, that’s a different situation.
When choosing one patient over another, are there factors other than age, parental status, and “productive life ahead” that you would consider? In a triage situation, how would you score “productive life ahead” in the decision making process? Hospital personnel rarely know much about their patients. I made choices assuming treatment is available. You’re assuming it’s scarce. I wouldn’t know how to game all the possible scenarios in one document, and I’m not ready to opt out of treatment.
Judging from feedback within our senior residence, yours is the majority view. But there are a few of my friends (perhaps not coincidentally all grandmothers age 80+) who prefer to “go gently into that good night.”
It’s intensely personal. No judgment.
Pax vobiscum!
I was talking about this to my son today. From what I have seen and read not a lot of people do get off a ventilator. I am quite sure if there was a need for one and healthier people needed it they would get it over me so like you I am staying home.
Do you have a solicitor who could guide you over the phone about this? I think we need to be thinking along these lines. My 85 year old dad died it February and despite the DNR etc order by a State Appointed Guardian the ambulance staff tried to bring dad back after his heart failed. He had vascular dementia after a horrid stroke seven years ago and was on his sixth year of agonising Mets from Prostate Cancer. So my thought is we need it freaky legal and we need to speak up or our loved ones do if it is taken out of our hands
I see different numbers as to how many survive being on ventilators, but both the Washington Post and New York Times today had information about life after ventilators. Especially with Covid-19, the life after is not good. Long, long recovery, trauma from continued isolation. I’d try it if I were younger and in good health, but not now. Here’s one link: https://www.washingtonpost.com/health/2020/04/03/coronavirus-survivors-recovery/
Thanks Grace. We only have 44 patients in Australia on ventilators. Out of 5635. So far we do not seem to be having as many of the more severe cases except in the elderly who arrived home from cruises ships. They and the ones they infected make up half our numbers
Thanks so much for the link
Sorry about auto correct. Hope you can interpret the above!
Another way to analyze end-of-life choices is utilitarian. Given that this highly infectious disease will—,judging by Italy’s experience—strike medical and other hospital and transport staff, I ask myself whether extending the life of my 82-year-old self is worth adding to the risk to the lives of highly trained younger people and the support staff with families to support.
Another way to analyze end-of-life choices is utilitarian. Given that this highly infectious disease will—,judging by Italy’s experience—strike medical and other hospital and transport staff, I ask myself whether extending the life of my 82-year-old self is worth adding to the risk to the lives of highly trained younger people and the support staff with families to support.