Several months ago, at a time of relative innocence, we were only thinking about one pandemic.  Then, with the murder of George Floyd, the world erupted and a second pandemic - racism -  became much more clear.  (See my last newsletter)

Having read this article several months ago, I had planned to write a newsletter about it then, but the news of the day was much more important. Circling back, I want to reconsider the article, and how poorly prepared most of us are for end of life care.  

​COVID-19 has thrust this knowledge into our collective consciousness, and has helped some people make decisions for themselves that they had not done previously. In the last month alone, I have had 2 people in my life about to undergo surgery who were unprepared for end of life decisions.  They had no healthcare power of attorney, no durable power of attorney for finances, and one of them had no advanced directive accessible to anyone who might need to see it.

I now ask: What if you got COVID-19 and had to be on a ventilator? Would you want that? Have you confided to anyone close to you about what your decision would be?  

Most of us are going to answer no.

Until approximately 5 years ago, I thought that the way my family had dealt with end of life planning was normal (I can hear my siblings laughing to think I believed anything our family did was “normal”). 

​I have since learned that this is unusual. What it did for me was to make the subject of end of life not scary. My husband’s story is 180 degrees from mine. 

When my husband's father died prematurely and unexpectedly, there was nothing in place to guide the family, including no life insurance. Now that is scary. Thankfully, it made him proactive as opposed to avoiding the topic altogether.

Now that we are all faced with the possibility of COVID-19  and the uncertainty of how we will fare with this disease, I would like to make some suggestions. 

Here is what everyone should have in place:

When the time came, the three of us sat on the dining room floor with all of the small items around us, drew straws for who would go first, and then picked the thing we wanted most.  We did this in order until there was nothing left any of us wanted. We did not follow what was specified in the will exactly, but we were all happy with the outcome, and we knew that was the main aim of our parents.

For those with minor children, you must make a plan for who will raise your children if both parents die, and how the money will be dealt with. This requires a lawyer, and should have been done yesterday.

All of these documents should be easily accessible, and a copy should be provided to those you have designated. 

Remember, if you need coaching or counseling about what to do or how to make these decisions, I am here to help. 

​In the meantime, stay masked, wash your hands, maintain physical distance, be kind to each other —you know the drill.

Last month I talked about advocating for ourselves, whether or not we have a professional advocate with us. These were tactics dealing with gathering the information we care about at our medical appointments, and also giving complete and accurate information. Here are some tips to use once you have gathered the information, have been given an explanation of what is wrong, and hopefully some options for treatment. These are for the next step: getting the care for your medical problem.
1. Always ask, “What else could this be”? 
Be sure your doctor has considered other options. In medicine we call this the differential diagnosis. Why have other options been ruled out? Why has this option been ruled in? Make sure you understand the thinking.
2. Never undergo a treatment unless you understand what it is, why it’s needed, and what the alternatives are. This is the corollary to number one above, but is critical if you are going to have a treatment such as surgery, or even a minor procedure. If you don’t feel convinced you need that treatment, hold off until you do or decide on a different modality.
3. When you are in the hospital, make sure everyone who enters your room washes their hands.
I mean everyone! No exceptions! It is okay to ask, and to demand this. Almost every hospital in America has a plan for 100% compliance with this. Think of yourself as just helping them achieve their goal. And improving your safety at the same time. A win-win.
4. If you are feeling uncomfortable, uncared for, not listened to, and talking about it doesn’t resolve these feelings, change doctors. 
Yes, really. It is okay to change. It happens to all of us. You are far more important than the concern you might hurt your doctor’s feelings.
5. Be assertive (see 1-4 above).
6. Trust your gut.
This one comes with a caveat—sometimes your instinct is not accurate, its really fear rearing its ugly head. But if you think something is not right, trust yourself. Don’t go along with it if it doesn’t feel right (see number 5 above).
I hope these tactics help you get the most responsive and best and safest healthcare for you and your family members. Let me know if you have questions or comments.