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.
As most of you know, I am a zealot for the overthrow of the healthcare “system”—since it is not adequately serving any of us. You might think overthrow is a bit of hyperbole, which I suppose it is, but I believe what we have now needs to be totally reworked, including how it is paid for. Putting patches on a sinking ship is too little too late.
An example of how badly this system—controlled by financial considerations—went off the rails has been in the news lately in Seattle. One of the major healthcare systems in our area underwent an expose by The Seattle Times; it seems the leadership of the neurosurgery department had lost its moral compass, and what was occurring was unethical and also illegal in some cases. Quality of care had been sacrificed for profit.
A Lost Voice by Mike Baker
Unfortunately, patients suffered poor outcomes and there was at least one death that likely could have been averted. Heads rolled, the head of the department lost both his job and his medical license, the CEO resigned, the state department of health investigated, JCAHO got involved (never a good thing), and major changes are underway.
There are many fine doctors in this hospital system, and I was extremely gratified to learn that many in that department, many of whom I have worked with, very vigorously objected to the circumstances and some suffered repercussions (one just was awarded a large amount of money for being fired as a whistle blower!). The past chief executive of the system’s physician division confronted the leadership regarding the situation suggesting that action be taken.
So why am I writing about this? For one, it confirms what I know to be true—most doctors are committed to doing what is right for their patients, do it well, and call out those who are acting counter to their principles. For another, when I initially read the articles in the paper about this investigation, I was screaming in my head “no, you need an advocate there!”
A young woman lost her life, despite the fact that her father is a doctor and was present in the ICU urging those caring for her to do what was needed. His concerns went unheeded.
Having someone who is not related to the patient serving as an advocate is invaluable. No one can think clearly when their child is struggling to breathe. As advocates, we have no qualms about raising a ruckus, confronting care givers, or going up the chain of command until we get what is needed, particularly when it is a life-threatening event. I would like to believe that if an advocate had been there this young woman would still be alive; I don’t really know if that is the case, but I do know that if I had been there, there would have been a lot more yelling and screaming going on. Sometimes that is the best thing an advocate can do.
On that less than uplifting note, I do hope all of you had some rest and enjoyment over the holidays and are having a wonderful new year.
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.
As spring has arrived, I have been immersed in something that involves the end of things rather than the beginning. Recently, I started a new service helping people plan for what they want at the end of their lives (i.e. helping them figure out what they want in their advance directive), while also serving as the healthcare power of attorney for those who do not have or do not want a family member to do so.
Writing this newsletter was spurred by an article I read recently by an attorney—no longer practicing—who holds the position that lawyers have no business in the field of advance care planning.
Lawyers have no business in the field of advance care planning
by Phyllis Coletta
The author of the article, Phyllis Coletta, says:
Here’s what happens when a lawyer gets involved in advance care planning: They tell you to appoint a health care agent, but don’t stress that you must talk to that person and all other loved ones about your values and range of decisions.
My ER doc friends tell me there is no document that comes close to the help of a well-informed family at the bedside.
I often tell people that I thought my family was the norm in terms of advance care planning. (Why I thought this was the case is a mystery to me!) My parents had a very thorough advance directive, which we all had copies of, and we all knew who the agents in charge were. When crises occurred, we could read the document to figure out what each parent wanted for their care. Further, my siblings and I are very close to each other and would talk frequently to ensure their needs were being met. Also, my parents had arranged for themselves financially, which reduced the burden on us as their children.
When I began researching this kind of work, I was surprised by what I found. I was astonished that potential clients did not realize that I needed to spend quite a few hours with them to get to know them, and what they would like to happen if they are unable to speak for themselves. In fact, I tell them that I am channeling them, so it is important to know who I am channeling! Isn’t that what we all want—someone who will carry out our wishes as close to what we would do for ourselves as possible?
What have I found instead?
I want to leave you with some really great resources for figuring out your or your family’s end of life decisions:
death over dinner
the conversation project
This is a conversation that does not need to be painful, sad, or morbid. It can create connection, and avoid a lot of pain in the end!
Happy summer everyone. I am relishing the beautiful weather and flowers, as well as the fresh vegetables and long hours of daylight!
I have been thinking a lot recently about how things are not always as they appear; often you need to dig a little deeper to find out the truth. So much of what we read these days is hype or selective reporting. Sadly, this is extremely true of medical information. I recently read an article about how Big Pharma (the pharmaceutical industrial complex) has made this into an art of sorts, and that if you take what you hear at face value, often you will be deceived.
More importantly, this topic came to mind because of an article that has received a tremendous amount of press in the media after it was published in the British Medical Journal.
Medical Error - The Third Leading Cause of Death
by Martin Makary and Michael Daniel
Dr. Martin A. Makary of Johns Hopkins and research fellow Michael Daniel wrote a paper stating that medical error is the third leading cause of death in the US. This is quite alarming, and in medical circles has led to quite a bit of head scratching—this is not what any of us have experienced, so is it really the case? How could we be so unaware of the third leading cause of death?
Prior to this paper the data used to discuss rate of death from medical errors was from 1984. Dr. Makary does state that the 1984 study was not great science, however, they did find several good studies, reviewed the data, and came up with the figure of 251,000 deaths per year in the US from medical error.
It has been pointed out that Dr. Makary used 4 observational studies on incidents that occurred between 2000 and 2008, not exactly an accurate reflection of what the rate is now. More importantly, the patients in those 4 studies were dominated by inpatients in the Medicare community, a more risk prone group than the general public. In fact, the authors say “the assumptions made in extrapolating study data to the broader U.S. population may limit the accuracy of our figure”. Aha, maybe it’s not as accurate as it appears in a splashy headline in our newspaper.
Check out the analysis and rebuttal of the science in the article below.
ANALYSIS - Re: Medical Error - The Third Leading Cause of Death
by Kaveh G. Shojania
Cause of death is often multifactorial; a terminally ill patient may experience a medical error, but their underlying disease may be the majority of the cause of death. There is a huge and often unrecognized difference between an error and a bad outcome. All medical treatment has a risk of bad outcome even when no errors occur.
This is summed up very well in an article from Vinay Prasad on Stat News. "While the report in the BMJ — and the press release promoting it — sounded like researchers were on to something new, they were merely reminding us of old data."
Don't Believe What You Read on New Report of Medical Error Deaths
by Vinay Prasad
No one would disagree with the efforts to eliminate medical errors to the highest degree possible, and like many important aspects of healthcare, this is one that is underfunded, understudied, and often swept under the carpet. Yet, to overstate the incidence does not help the effort to decrease medical error.
As advocates we will never stop working to prevent medical errors from occurring, but we need to be careful not to see them around every corner where they may not exist.
Dr. Sima Kahn muses on being a healthcare advocate, the troubles with our healthcare system, and how to advocate for ourselves.