Monthly Archives: November 2020

Reflecting on the expression “the treatment cannot be worse than the problem” w/i the 4+1 health questions.

Chronic Illness, COVID19, , ,
Note: Some profanity will be required.
 
Among a number of expressions that have gained prominence with COVID19 is along the lines of, “the treatment cannot be worse than the problem.” As a matter of *personal* choice, this a 100% valid decision for health care. As a matter of public policy or in the situation of someone having to make decisions on behalf of someone else, this is profoundly problematic. How you decide for yourself is totally your right, and make sure that everyone who may be involved in your care if you should ever become incapacitated knows what you want. How you decide on behalf of others should be informed by what THEY want or would want if they were able to express for themselves. This may result in conversations that are difficult, and I am very willing to support you/them in whatever ways I can.
 
I strongly believe that these conversations benefit from the structure offered by the four questions framed by Dr. Atul Gawande in “Being Mortal”, and an additional one included from Arthur Frank’s “Wounded Storyteller.” Essentially, as follows:
 
1. Do I understand what is happening?
2. What am I willing to do for a chance at staying alive?
3. What level of being alive is meaningful to me?
4. Could it get worse?
+1. If I become ill again, or when I do, how will I find ways to avoid feeling my life is diminished by illness and eventually dying?
 
Can the response be worse than the problem and still be worth pursuing? YES. I was absolutely unaware of my kidney failure until my physician had a piece of paper with numbers on it and said I had to be hospitalized immediately. The level of mindfuckery around trying to reconcile how I thought I understood my own body and how dialysis felt remains a source of intense anxiety to this day — am I as ‘well’ as I think I am, or am I actually desperately ‘sick’ on the precipice of dying in front of my family and don’t even know it? My son was uncomfortable with appendicitis, but it presented in an ‘atypical’ way which meant that he was wholly unprepared for the pain following surgery. They removed the ‘bad’ thing, so it was irreconcilable and reality- or trust-breaking for him to wake up in excruciating delirium (that passed, in time). Enduring digestive crisis with magnesium supplements, which support the health of my heart, is worth it, I think. I could go on, but it comes down to: Would I make decisions about what happens to my BodySelf for the sole reason of being a relief to others? Yes. I would endure nuisance, discomfort, boredom, loneliness, amIstillaworthyperson anxiety, and whothefuckamI pain. If you do not know from direct experience how each of those impact health care responses, you have been fortunate to avoid significant illness and perhaps should listen to many more stories from many more people before weighing in on this as a crisis for society.
 
Can the response be worse than the problem and still be worth pursuing? Well, YOU be you and tell everyone what you want for yourself. From the stance of a National and International response, we need to think carefully about what that means medically, ethically, and socially.

End blip.

Practicing Airplane Rules and the 4+1 questions around health

Chronic Illness, , , ,

My Airplane Rules Ethic is: (1) Self-care matters (put your oxygen mask on first), (2) Practice your safety plan in entirely calm/controlled ways so that it is ready (even for the extreme, however unlikely), (3) Abide a social contract that the person *after* you has a positive experience (clean the bathroom before you leave).

Relative to decision-making for health, I put forward a “safety plan” based on the  four questions framed by Dr. Atul Gawande in “Being Mortal”, and an additional one included from Arthur Frank’s “Wounded Storyteller.”  Essentially, as follows:

1. Do I understand what is happening?
2. What am I willing to do for a chance at staying alive?
3. What level of being alive is meaningful to me?
4. Could it get worse?
+1. If I become ill again, or when I do, how will I find ways to avoid feeling my life is diminished by illness and eventually dying?
I will use a personal example of my own to illustrate:  my blood pressure has been high for awhile now.
1. Do I understand what is happening? Yes. I have a significant family history of hypertension (high blood pressure), and I only have one functioning kidney (my native/own kidneys stopped working in 2009, I have a transplant kidney since 2011). High blood pressure often has no “feel-able” symptoms, but wears on the blood vessels and organs (including heart and kidney). In addition to inherent risks such as a stroke, hypertension is a threat to my donated kidney.
My not-a-doctor understanding of blood pressure is that it is measured with two numbers, systolic and diastolic.  Systolic is the pressure when the heart is actively in contraction (beating), diastolic is the pressure exerted in the pause between beats.  It was explained to me that blood vessels have some amount of flexibility to respond to the amount of tension pushed on them — like a balloon which can ‘bulge’ outward when pressure is applied.  An aneurysm occurs when the vessel bursts.
2.  What am I willing to do for a chance at staying alive? This may seem like an extreme question under this particular set of circumstances; but it speaks to my belief that if I have no practice at even considering an extreme, I will be less able to respond to it. Right now, the recommended course is to approach different pharmacological measures — take more and/or other medications. Kidney Transplant Recipients may take between 2 and 5 different medications just related to blood pressure and heart care. Depending on how a person evaluates anti-anxiety and anti-depressants for being a part of stress management, I am currently on 3 meds explicitly dedicated to cardiac and hypertension issues. I do not have the luxury of reservations about pharmaceuticals and I know that this is part of my life. Adding or revising something is fine, WITH ONE BIG CAVEAT. I have discovered in the last year or so that medications which likely give me headaches and migraines are more debilitating than when I was younger. Knowing that about myself, it becomes a discussion of balance. Does lowering my blood pressure mean that I am reduced to dark, quiet rooms lying down for x number of days (without being physically able to tolerate light, or process/comprehend reading)? Does that duration end as I adapt to the medication or is that a ‘side effect’ of the medication? How do these relate to my sense of my self as a spouse or parent? I’m already not working (and would like to), what would this state do to my sense of self-worth? Knowing this trend about myself has had HUGE implications for conversations with my physicians and pharmacists. It was also respectfully recommended that I lose weight; which, sure. I think that is indisputable. I also have no belief, literally none, that I can achieve that. I ~may~ be able to stem the rate of increase, but I have no personal history that suggests I can achieve this particular category of loss.
3. What level of being alive is meaningful to me? Being in a dark quiet room, alone, isn’t my problem with migraines. It’s being away from my family and the goings-on of life with them; the joy we share, and the burden it places on all of them when I am not available to do my part. If it is a duration of acclimating: We agree as a family, it is worth doing. If it is a permanent state of a medication, we agree as a family, I am supported in making other decisions. A meaningful life to me includes being able to interact with my loved ones (near and far).
4. Could it get worse? A moment of pause in the conversation with my physician about all of this was when he asked how long I have had my transplant. This upcoming July (2021) will be TEN YEARS. A decade. I was reveling in this moment and vibing gratitude to my donor (who is still living) and his family, when I noticed my doctor had a more concerned look and *that* really gave me pause. I am proud of what I have been able to achieve with the support of my family and Doug and also the love and support of so many others. In his concerned look, I realized that he was doing a different calculation related to longevity. How do I support this amazing gift? Right now, Doug Kidney continues to do wonderfully well. I always want my decisions and behavior to respect that. If there were things *I* COULD do, but didn’t, that would be exponentially worse. (Refer back to the weight loss thing). There are plenty of aspects beyond my control and I receive that awareness with mortal humility. And there are other ways it could get worse, e.g., if I were to have a stroke.
+1. If I become ill again, or when I do, how will I find ways to avoid feeling my life is diminished by illness and eventually dying? For myself, I am not at odds with illness and death. I do not abide ‘war’ metaphors with my personhood, so I am not in a battle against a variation of Before-Me or opposing death. For how I relate to people I love, I do not want to increase the suffering or toil experienced by others in relation to my health, illness, or dying. So one of the ways I find is to now have conversations about it, to at least let it be known that I am not afraid of that. To gauge from the people most close to me and directly related to my well-being, how to support their well-being in the process. It’s an on-going story, and it unfolds as it does.
End blip.