6 Comments

1. 

   Brenda on April 10, 2020 at 7:19 am

   Because I am at high risk of dying if I got COVID-19, I have been practicing pretty aggressive social distancing since the second week in March. Two of my grandchildren are/were in public school, making them great vectors for picking up the virus and transmitting it to others. Their father had to continue work until this week, so despite his efforts to take all possible precautions, he, too, has been a possible vector for transmission. Finally, the children’s mother, who is divorced from their father, has had a very “meet the public” profession and, to make matters worse, has not socially isolated herself very effectively. She has physical custody of the children half the time. Again, a vector for transmission of the virus.

   The bottom line is, I can’t be around my grandchildren. One of the ways I have given structure to my life and continued to feel useful was in my interactions with my grandkids, helping out their parents in ways that I could. All of that is gone.

   Volunteer work that I did to help give structure to my life? Gone.

   Gathering with a few of my friends from work? Gone.

   I have bad dreams from which I awake in a panic several times a week.

   I feel depressed and anxious far more than usual.

   I have most of the symptoms of COVID-19 anyway, on a (comparatively) low level. Now, each time I cough or when I spike a brief temp in the evening or when I note that my throat is sore…I have to remind myself that this is “normal” for me at this level. It’s probably NOT a sign that I have COVID.

   The isolation and the feeling that this is a world-changing event for me and everyone else has highlighted existential/theological issues I’ve had for decades, bringing them to the forefront of my thinking again. I find myself angry and frustrated. You want comforting answers that hold up to time and circumstance, in these matters. All the ones I’ve read, over the years, do not hold up. Not for me. So I’m left with my anger and frustration.

   There’s not a lot of “bright-siding” that I can do on this. But there are one or two things. The most important is, I keep trying to make productive use of my time in isolation. Each day I try to do several things–even very small things–that are productive and positive steps forward. Small chores that I’ve been needing to get done are slowly getting finished. I’m slowly tackling the bigger chores, too.

   Because I am literally terrified to go into the stores, I shop online now and do curbside pick-ups. (They put the purchases into my trunk, which I can open from inside my car. Once I’m home, it’s gloves and sanitizer to unload!) While the process of trying to get a time slot for pick-up is maddening, the net result of using this service is that I do less spontaneous purchasing. Meaning I save some money.

   I also eat out less, which again means I save some money.

   I’m traveling less, which means savings on gas and less frequent need for oil changes.

   For now, these are my thoughts.

2. 

   Brenda on April 10, 2020 at 10:14 am

   While self-isolation has been difficult, it has produced one unexpected thing. As a retired person, it sometimes feels as if the world is moving on around me while I’m simply marking time. I slowed down when I retired; the rest of the world did not.

   Now that the rest of the world has been forced (more or less) to slow down, too, I feel less like a spectator on what’s important, and more like a participant in something important.

3. 

   Brenda on April 11, 2020 at 10:05 am

   What will we learn about our healthcare system as a result of this pandemic?

   I think we’ll learn that more of it can be done via telemedicine than we thought, and people will become somewhat more comfortable with using that modality.

   I think CEOs and COOs will be examining the preparedness of their institutions to meet sudden disasters and will do a lot of re-evaluation of supply stock and chain, distribution and training of personnel, and disaster planning.

   I think the issue of easy and immediate personal access to and/or participation in one’s own health record is going to be set back, while the issue of having health records that move easily and quickly with the patient (for the clinicians’ purpose of treating them) is going to be fore-fronted as a necessary direction for medical record-keeping.

   We’re going to be taking a long, hard look at how to manage scarce medical resources, bringing further to the fore all kinds of issues of medical ethics. We’re going to try to make further guidelines and rules, yet those rules are going to have to allow for their contextualization…which is always going to be a bit of a sticky wicket.

   I think the argument for universal health care and a single payer system in the U.S. is going to be stronger. The ways that the government and some insurance companies have stepped up to help with the costs of diagnosing and treating COVID, eliminating the burdens of co-pays, etc., is a large, time-limited natural experiment in what it might look like to remove the burden of the cost of health care from the shoulders of patients as individuals and place it on our collective shoulders, as we do for other public goods. The ways in which this natural experiment succeed and fail in doing what we intend/need them to do will be analyzed and debated for some time, but in the end I suspect that the argument of “if it worked to X extent to manage a sudden public health crisis, imagine what we could accomplish to improve everyone’s health if these approaches to providing care for lesser health crises–individually and publicly–were always available.”

   I am probably being short-sighted on this point, but I am not seeing a lot of entry points in the coming (re-)evaluations of our health care system for discussion of participatory issues. For a long time, the mental point of reference in discussions is going to be this public health crisis, and in what is happening right now, as far as I can tell, leaves little room for participatory input.

   Personally, I have done my best to authorize someone who knows me well and is on staff at my hospital to be able to insert himself into the treatment process to represent me, should I become ill with COVID. But I sincerely doubt that I would have much opportunity to be a participant, myself.

   The medical treatment train in this setting, at this time, is running along fast and furiously, with “this is what we have to do, this is how it’s done.” The medical treatment train ALWAYS runs this way. SOP. Any deviation from SOP that may be requested by the patient is highly disruptive to the system and often earns them unfavorable reviews among their providers. Right now this is not just the standard train running along SOP tracks; it’s a runaway train barreling down the tracks, using a combination of SOP and the creative invention of new “SOP” as situations seem to demand. There is little space, in there, for participatory medicine to take place.

   I just can’t see how participatory medicine might be advanced in the wake of this public health disaster, using the COVID experience as a springboard to promote patient participation in their own health care. I’ll be very interested to read any “yes, but…” responses anyone wants to share.

4. 

   Joseph Ternullo on April 15, 2020 at 6:38 am

   Hello,

   First, I want to acknowledge Brenda’s comments. I had the opportunity to hear her present a couple of years ago and found her to be a brave and inspiring leader who was not only pointing the way forward but also had a touch with people and the ability to easily connect with others. In providing the first comments on this terrific site, and in such fine detail, to paraphrase Ronald Reagan, ‘there she goes again! Thank you Brenda and STAY WELL. You and your voice are needed.

   To share a bit about my world, there are four of us sheltering in place at home – lot of zoom conferences going on, both for business and family. At least one family member has tested positive for covid19 but symptoms were mild and passed in three or four days. Other members of that household have not tested positive for the virus and a retest will occur sometime in the next 10 days.

   Affect on my health is to be determined. On the one hand, especially as the weather is improving, am walking 2-4 miles each day. On the other, am probably eating more ‘comfort food.’

   Similarly, the effect on our healthcare system is to be determined, although my instincts tell me that we have entered the age of telehealth, the tricorder, and ‘the Jetsons’ and Starwars style healthcare and there is no turning back.

   To all I wish good health and safety, especially at this time.

5. 

   Geri on April 21, 2020 at 11:07 am

   April 23 webinar on the unique challenges facing informal (family) caregivers during the COVID-19 pandemic and strategies for using technology to connect with them and help them manage a “new normal.” http://www.nhitc.org/community-transformation-forum.html?fbclid=IwAR2GeQlAhwy8smrEDEE0O5hzutqnZwA9GdcCLsDP2aA0qhSkQQgRKk4KHeA

6. 

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