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.
Fearing COVID-19, and ventilators, older people alter their living wills
By Judith Graham - The Washington Post / Seattle Times
Respiratory therapist Neeru Kaur, right, and other medical staff assist a patient in the COVID-19 Intensive Care Unit at Harborview Medical Center on Friday, May 8, 2020, in Seattle. For some older people, a ventilator is their greatest fear. For others, there is hope it might pull them back from the brink. (Elaine Thompson / The Associated Press)
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”).
Most interesting of all, I remember when I was in high school, my parents would sit us down around the dining room table to discuss what each of us three kids would get when they died. (My poor brother, being 6 years younger than me, got the short end of the stick.) Eight years later we sat down and repeated this discussion when we were all more mature. It did not feel morbid or scary, it was just 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:
In Washington, our HCPOA does not need to be notarized, although I do recommend that you take this step. If you are traveling to a state that requires notarization, you will already have it 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.
I have been thinking a lot about end of life planning. I recently started helping people with this aspect of their lives by acting as a healthcare power of attorney for those who need a non-family member in that role. And yes, I intentionally italicized "of their lives."
A good friend’s mother recently died at age 94; she was well loved by her family, and very well cared for despite living for many years disabled by a stroke. My friend and his family were able to be with her in an inpatient hospice setting, it was clear she did not want any extraordinary measures taken to prolong the inevitable, and they could sit and hold her hand as she passed. Sounds pretty ideal, right? And despite glitches along the way, it seems so.
As we were discussing it after her shiva (the Jewish period of 7 days of the acute phase of mourning—or less depending on your adherence to classic protocols), it occurred to me that there are 3 general death scenarios. The one above is the clear scenario that most of us envision as “a good death”.
Putting in Place An A-Team of Allies
by Judith Graham
Another scenario is where a family member dies suddenly, unexpectedly, and the family and friends are left in shock, having had no time to process it before it happens. Interestingly, this is not necessarily a “bad death” for the deceased, but it certainly is hard for the family.
Don't Wait: Now's the time to discuss end-of-life-care
by Robert Powell
The third general scenario is where some or all of the participants (including the “patient”) have not accepted that death is a part of life (thus the italics above). The hard discussions of what the person wants at the end of life, when they want to push on, when they want to call it quits, where they want to die, who they want with them—all of the factors that go into a “good death”—have not been discussed, or the family ignores the wishes and countermands them. Or worse, there is disagreement among family members about the treatment course.
Why you need a Healthcare Proxy and how to choose one
by Debbie Reslock
I cannot claim to have the lock on what a good death looks like to others, but I do know what can be done to lessen the stress felt by families going through this passage. In the first scenario, end of life wishes were known and discussed, and it was the end of a good long life. In the second scenario, there was likely no preparation, and nothing can mend the shock felt by the family except time. In the third scenario, there is a lot of preparation that could be done to prepare for and avoid conflict and stress.
This is why I advise everyone to have a healthcare power of attorney designated and an advance directive in place. We can make a death better for both the patient and the family if we confront this before it is needed. I have been through two of the three scenarios personally, and I vastly prefer the first one.
Even if you don’t have a serious or life threatening illness, or don’t have access to a healthcare advocate any time of the day or night, there are tactics you and your family can use to advocate for yourself or your loved ones. Using these tactics will make your healthcare go more smoothly, with fewer missteps and hopefully fewer errors and delays of needed care. And these are things anyone can do! You just need to be prepared. Here are 3 of the most important tips for advocating for yourself:
1. Have your important health information with you.
For most people this means having printed out your contact information, who to call in an emergency, your medical conditions, medications, and allergies. I have developed a Health Portfolio™ that has all this information in a loose leaf binder that is easy to carry with you, as well as a one page easily portable form that can be taken anywhere (contact me if you are interested in this service).
2. Make a list of questions for your doctor before you go to an appointment, and at the appointment, write down the answers.
This enables you to review what was said later, when you can think more clearly. You can then check with reliable sources to clarify, like a healthcare advocate, good internet sources, or the staff of your doctor’s office.
3. Have someone come with you and take notes.
I can’t stress how important this is if you are going to an appointment to get results of tests, especially biopsy results when you are concerned about cancer. Once you hear the results, if they are not what you were hoping for, most people do not hear a word! Their brain goes into that altered dream state where they are aware that someone is talking but have no idea what is being said. They are too involved in the movie in their head where everything is going badly. And its hard to take notes yourself when you are in that state.
4. If you use the Internet, look at reliable sites.
For instance, use the Mayo Clinic site, Uptodate, WebMD.
These tactics should help to insure that you have accurate information both to give to your doctor, and most importantly, that you get from your doctor. Having questions written down ahead of time means your concerns will be addressed, and having a friend or family member as a scribe makes sure that you have the information that was given to review.
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.
Dr. Sima Kahn muses on being a healthcare advocate, the troubles with our healthcare system, and how to advocate for ourselves.