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 trying to write this newsletter for a month now, but the despair of this moment we are in has kept me from doing it. What can I say that every single business / celebrity / political figure / news reporter who is worth anything hasn’t already said?
Racism is an evil. Racism is a public health emergency. There must be a change in how we police our communities.
I have partly kept my sanity by watching the late-night comedy shows. Their truth telling, as well as their ripping to shreds of the current administration, are deeply satisfying. I am heartened by all the changes happening that are so long in coming—and those changes are not nearly enough. I think the fact that we are all captive audiences due to the pandemic has helped white people see in a way they have previously chosen not to.
I have read and watched videos of many anti racism scholars, writers and speakers.
What I Recommend
Ijeoma Oluo - So you want to talk about race
Ibram X. Kendi - How to Be an AntiRacist
Robin DiAngelo - White Fragility
I especially recommend this absolutely stunning and moving impromptu sermon by author Kimberly Jones. Jones gives a powerful, eloquent speech that explains in detail why this is happening (racism across 450 years) and the difference between protesting, rioting and looting in 2020.
And this article in the New York Times, written by Darren Walker, president of the Ford Foundation.
Are You Willing to Give Up Your Privilege?
Philanthropy alone won’t save the American dream.
This is something I have been thinking and talking about to my peers, my family, and my community. What am I willing to give up?
I have been thinking about it in a very concrete way. As a physician, what would I be willing to do (or to give up) had I been or if I should be present when someone is calmly snuffing out someone’s life?
I am committed, essentially programmed, by an inborn quality and by my medical training, to save lives, to do all I can to try to heal. Like me, this is true of most healthcare workers.
This is why you have seen such incredible sacrifice on the part of all healthcare workers to take care of people with COVID-19, when that care becomes a risk to themselves, their own families, and their communities.
What am I willing to give up?
I am willing to give up the ease of access I have to the highest level of medical care if it means that everyone now has access to life-saving and preventative medical care.
I am willing to pay higher taxes if it means we have social services for all that need them—housing, mental health services, food, and a host of other needs.
I am willing to stand up to systemic racism and violence against black and brown bodies to ensure that we all have equal opportunities in this life.
Am I willing to give up my life?
This is the scene I replay over and over in my mind. Is there a chance that a 60 something white woman, a physician, could have used my privilege to get this to stop before it was too late, without getting shot? In my screenplay I am successful. That’s the benefit of me being the author.
Today I watched this clip from Democracy Now.
Noura Erakat, a well-known Palestinian human rights lawyer who teaches at Rutgers, is interviewed and speaks passionately about her cousin who was murdered at a check point in the West Bank. It reminded me of “home."
Her cousin bled for 1.5 hours without being taken to a hospital. The same question ran through my head. If I had been there what would I have done?
I can add my voice to the many who have said racism is a health emergency. We are all dying from it. Are those of us who have it willing to give up our privilege? Are you? The answer has to be yes.
As I work from home, I've had more time to reflect on the challenges we all face during this time of social upheaval. While my life hasn't changed significantly, I often work from home, I know that it has upended the lives of my friends and family.
It is finally clear how fragile our healthcare system is, and that our leaders are struggling to meet the demands of this pandemic. We all feel worried, nervous, anxious, and overwhelmed. While there is a breadth of daily information on aspects of the outbreak, it isn't always clear how that may affect you in your personal situation.
This is where I can help.
As a healthcare advocate, I want to be there for you and your family, to answer your specific questions, and to provide guidance, research, answers, and compassion. Whether you are facing pregnancy during the coronavirus and have concerns, or you are caring for an elderly parent and want to ensure you are both staying safe, or you are having health complications and feel you aren't being heard. I want to help you.
I am expanding my services to include one-hour consultations to provide answers to any immediate questions, offer counseling and guidance about your concerns, and research options and opportunities to ensure you feel secure in your health, and the health of those you love.
Schedule your session today. I am here for you.
I hope everyone had a good holiday season! I am back to the routine, despite the weather. We had a tiny amount of snow in Seattle, not even half an inch in my neighborhood. Snow causes this city to slow down to a crawl and schools close. This gave me the opportunity to stay indoors and catch up on work and reading.
When I started writing about healthcare, one of my first newsletters addressed “going upstream." One of the up-streamers I read about was Dr. Jeffrey Brenner in Camden, New Jersey. He developed a model of care, almost 20 years ago, that featured a very intensive intervention for the most vulnerable people. Dr. Brenner was highlighted in Atul Gawande’s article for the New Yorker “Hot Spotters” (which is Gawande’s term for up-streamers.)
Dr. Brenner's hypothesis was that this intervention would save the healthcare system money by decreasing hospitalizations and emergency department use. The goal was to improve overall health status while decreasing the use of resources.
However, my reading this week led me to this article:
Reduce Health Costs By Nurturing The Sickest? A Much-Touted Idea Disappoints
This Uighur Journalist Is Bravely Fighting a Homegrown Cultural Genocide
Gulchehra Hoja has dedicated her life to protecting her people, who are being tortured for their religion and identity
Article by Jennifer Chowdhury
Photo by Mohammad Amir Hamza
Here are some things we can do:
• Discourage anyone from traveling to China for organ transplantation
• Spread the word
• Educate yourself about this issue
• Write to your Congressional Representatives when an issue like the Uyghur Human Rights Policy Act of 2019 comes up for a vote (it was passed in the Senate and has been introduced in the House.)
• Support local Uyghurs wherever you are—not a single family I know has been spared the disappearance of at least one relative.
“When we know ourselves to be connected to all others, acting compassionately is simply the natural thing to do.”
― Rachel Naomi Remen
Sima Kahn, MD
Founder, Healthcare Advocacy Partners
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
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.
Our 2018 NAHAC National Conference is coming soon!
Advocacy as a Public Health Campaign: Understanding Historical and Modern Trends
When: Thursday, November 1, 2018 - Saturday, November 3, 2018
Where: The Marriott Hotel, Marina del Rey, CA
General Registration is now open - July 1-August 31
Pricing: NAHAC Full Members Only: $399
(includes Full, For Profit and Not-For-Profit Memberships)
General Public/Non-Member Registration: $435
For more information:
This month I wanted to share some thoughts I had after reading an excellent article in the New York Times Magazine about the “reinvention” of primary care delivery. It features the work of Dr. David Meltzer from the University of Chicago, who was a speaker at one of the national conferences of the National Association of Healthcare Advocacy Consultants (NAHAC), my professional organization as an advocate.
His research looked at the doctor-patient relationship, and whether longer appointments with a person’s primary care doctor (yes, all of them with the same doctor!) were economically sustainable.
Trying to Put a Value on the Doctor-Patient Relationship
by Kim Tingley
Photo Illustration by Weronika Gesicka
“Meltzer insists that doctors spending more time with their patients actually saves money. After a year in his clinic, for instance, patients have 20 percent fewer hospitalizations than their control-group counterparts. Because hospitalizations make up the greatest portion of these patients’ annual cost to Medicare, which averages $50,000 to $75,000 each, that reduction is worth several thousand dollars per person in the first year, or a combined several million dollars; by comparison, the doctors’ annual salaries add up to less than $1 million.”
Dr. Meltzer’s clinics run “leaner”—fewer people in the mix, and:
“To accomplish this feat, he employs the oldest, slowest, least-innovative health care delivery model imaginable: general practitioners who oversee almost all aspects of their patients’ care and, in doing so, come to know them personally.”
What I love about this article (besides the fact that it validates what I have been saying for years) is that it shows that this essential factor in healthcare actually makes a difference, and not just emotionally, which I think most of us believe. It makes a difference economically also, and it made a difference in the health of the patients.
It’s a win-win-win. Yes, I believe technology can help with communication and efficiency, and definitely with access to knowledge. And yes, the huge amount of medical knowledge requires subspecialization since no one can master all the information available in a single specialty. But there needs to be a quarterback that knows the patient and sees them as a whole. This is what I do as an advocate, but I believe that ideally the primary care doctor would fulfill that role and I would no longer be needed!
Now, how do we get the medical industrial complex to listen?
How Not to Say the Wrong Thing
by Susan Silk and Barry Goldman
Last year Elana Premack Sandler wrote this excellent explanatory article:
Ring Theory Helps us Bring Comfort In
by Elana Premack Sandler, LCSW, MPH
A few years ago, psychologist Susan Silk and her friend Barry Goldman wrote a piece about a concept they called the “Ring Theory.”
It’s a theory to help yourself know what to do in a crisis. If the crisis is happening to you, you’re in the center of the ring. If the crisis is not happening to you, you’re in one of the outer circles.
Here are the basic tenets paraphrased from Silk and Goodman’s article:
- Draw a circle. In this circle, write the name of the person at the center of the crisis.
- Now draw a larger circle around the first one. In this ring, put the name of the person next closest to the crisis.
- In each larger ring, put the next closest people. As Silk and Goodman state, “Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones.”
The concept is simple: “comfort in, dump out.”
I think disseminating this information will make the world a better place! It seems obvious when reading about the theory, but we have all likely been in the position of saying something similar that we later regretted. So please share this far and wide. As Susan Silk and Barry Goldman have said “And don’t worry. You’ll get your turn in the center ring. You can count on that.”
Dr. Sima Kahn muses on being a healthcare advocate, the troubles with our healthcare system, and how to advocate for ourselves.
Advance Care Directive
Advocating For Ourselves
Being A Healthcare Advocate
Dealing With Illness
Death And Dying