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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.
Especially now.
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.
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 Happy end of summer everyone!
The west coast has had so many smoky days! The fires have stretched from British Columbia to California, leading to skies that are worse than in Beijing! Thankfully, the sky is clearing, and hopefully our end of summer will not disappoint. I have been thinking about patient empowerment this summer, and what what it actually means to truly empower someone. The European Patients’ Forum says: Patient empowerment is a process that helps people gain control over their own lives and increases their capacity to act on issues that they themselves define as important. The World Health Organization defines empowerment as: “A process through which people gain greater control over decisions and actions affecting their health” and should be seen as both an individual and a community process. They go on to say: Four components have been reported as being fundamental to the process of patient empowerment: 1) understanding by the patient of his/her role 2) acquisition by patients of sufficient knowledge to be able to engage with their healthcare provider 3) patient skills 4) the presence of a facilitating environment. I think we can all get behind this, but what does it mean in real life? An example: A woman had cancer that had been successfully treated once, and then had a recurrence, also successfully treated. She then had a second recurrence and had participated in several clinical trials, none of which were adequately treating the disease. When presented with options for further treatment, there was no weighting of the different options, no side-by-side comparison of the efficacy, risks, benefits, and comparison to non-treatment. And that age-old question that doctors hate and patients continue to ask did not come up “what would you do if it were you?” This was/could be presented to her as evidence of patient empowerment—she was completely free to make whatever decision she wanted. But it was missing some vital parts of what is required for true empowerment: 2) acquisition by patients of sufficient knowledge to be able to engage with their healthcare provider AND 4) the presence of a facilitating environment With 3 or 4 choices thrown out and not enough information to understand them, how is that empowerment? Further, the opinion of the doctor is valuable—I have yet to meet an oncologist who didn’t have an opinion about how they would move forward. They may not tell the patient, but it is there. Even the information they don’t know is helpful, because the patient can move on to other criteria to make a decision. Such as how much is this going to hurt or cause other side effects that negatively impact their quality of life? In terms of a facilitating environment, this is a place a healthcare advocate can be truly helpful. Exploring the patient’s priorities and understanding their risks and benefits can provide the environment for engaged decision making. Ideally, the medical team is part of this process, but if not, healthcare advocates can fill the gap. It is not empowerment to feel lost at sea. That is why we do this work. As always, I would love to hear from you about your thoughts. Sima |
AuthorDr. Sima Kahn muses on being a healthcare advocate, the troubles with our healthcare system, and how to advocate for ourselves. Archives
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