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
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?
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.
This is a good time of year to look back at the year and do a survey of how well we are accomplishing our goals. I’ve been thinking about how to spread the word about healthcare advocacy, and this story struck me as a case in point.
Recently a colleague and friend said to me that she had thought about calling me (as a healthcare advocate) when her son had been very ill. He was much better now, but the family had gone through a very difficult and scary time. I wondered what had made her hesitate while they were going through the health crisis. We met for lunch recently, and she told me the story. Here it is with many identifiers changed, and I’ve included my comments in italics where a healthcare advocate would have helped.
This 22-year-old male’s past medical history is significant only for migraines, he has been active in sports and has been routinely healthy. He joined a fraternity in college and then moved into a house with friends where he began to have respiratory illnesses, and his health began to deteriorate. The house, which his mother describes as a dump (I thought that the house my son lived in his fourth year of university should be burned down when they moved out), was subsequently found to have black mold. He developed gastric ulcers that eventually bled and he was treated according to the appropriate protocol.
In December of 2014, he called his mother during a particularly bad respiratory infection to “come get me”. She did, and he was found to have pneumonia. Due to his illness he had to take an extra semester to graduate, but he recovered at home with appropriate medical care and finished school in March of 2015.
In October of 2015, his family noted that he was becoming more and more irritable, and he began to have more and more fatigue. (I should add here: this would not necessarily trigger a call to an advocate, but it would have been a good time for him to see his primary care doctor). Within 2 months he was sleeping more and more and eating less and less (again, see your doctor! This is not normal!).
In January of 2016 he noticed blood in his urine. Was this a urinary tract infection? He saw a urologist, who also ordered a CAT scan, which was normal. The possibility that he had passed a kidney stone was considered, although the symptoms were not particularly characteristic for that, and my friend’s son did not think that it was likely.
A week later his nausea, irritability, and fatigue had markedly increased. He saw a nephrologist at his medical clinic, who wondered if it was a virus. A creatinine was checked (this measures kidney function) and it was found to be 3.5 (abnormally high, especially for a young person). He was scheduled to have a scope of his bladder, but that was cancelled due to respiratory symptoms (asthma?). The next day, when he saw his urologist his creatinine was 5.5 (even worse! And rapidly worsening!) It was clear that something was going on that needed to be addressed urgently, and he was admitted to the hospital—and put on the oncology floor!
Here is the first point where a healthcare advocate would have been helpful. The family felt lost in space. And he was on an oncology floor! An advocate could have helped with the communication between the medical team and the family, and explained that this did not mean he had cancer. At a time like this, someone who can keep track of all the pieces of information and relay them calmly to a very distressed patient and family can be priceless.
He proceeded quickly to a diagnostic workup that led to the diagnosis of a rare autoimmune syndrome that attacks the kidneys. As a kidney biopsy confirmed this, his creatinine climbed close to 7, and his blood pressure increased. The doctors immediately began treatment with plasmapharesis (a method of removing blood from the body, separating the components, and reinfusing the cells but not the plasma--a way of getting rid of unwanted antibodies). They also treated him with prednisone, as well as an oral chemotherapeutic agent. He was told that 50% of his kidney tissue had been affected by the immune complexes. He believed, wrongly, that he was destined for a kidney transplant, and soon.
Next place for an advocate to intervene: not all medical providers communicate well with patients, and making sure the patient and family have a realistic idea of what could lie ahead is important. The emotional distress that this misinformation caused was significant, and entirely unnecessary.
He continued to have daily plasmapharesis for 4 weeks; his hospital stay was complicated by the development of a blood clot in his arm that required IV anticoagulation (overtreatment led to him bleeding from everywhere but dissolved the clot very rapidly), and a bout of hospital acquired pneumonia after about 2 weeks was treated with IV and oral antibiotics.
One of his doctors took his pathology slides to a conference because it was so unusual. He was discharged after a 4-week hospital stay on 20 different medications. His creatinine is now around 1.5.
What went well?
- Relatively rapid diagnosis after hospitalization, and appropriate treatment, with improvement in his condition.
- One nephrologist told him he would need a kidney transplant in a year.
- Lack of mental health consultation
- A different nephrologist every week for all 4 weeks he was hospitalized
- No support groups
A healthcare advocate would have been able to work with the system and the patient to be sure he had some mental health consultation during the hospital stay. In addition, the family needed some support, and this also could have been facilitated. In addition, if the nephrologist is going to change weekly, the healthcare advocate can be the continuity to be sure all sides are hearing each other.
Now: He is recovering at home, rides his motorcycle, and doing much better. He is off of chemo and has weaned down his prednisone. He has gotten much feistier (he doesn’t want his mom going to doctor appointments with him). But he went through a significant period of depression, and was even suicidal. He is on an antidepressant, which helps. He still feels under the influence of “chemo brain”, but this is slowly improving. And he is experiencing what sounds to me like PTSD.
A healthcare advocate would stay involved after discharge from the hospital, and perhaps could have hastened treatment for the depression, as well as help find resources to treat PTSD.
As my friend said, a healthcare advocate is like a SWAT team that can swoop in and make sure everything that needs attention gets attention.
My friend’s son had a fairly rapid diagnosis, good medical care, and is doing much better. Even so, the journey could have been so much less painful, scary, and a much smoother ride with an advocate.
A healthy new year to all!
I have been dreaming and having frequent conversations lately about a better way forward — for healthcare, our planet, and human relations in general. One of the issues that is often raised about our healthcare system is that the voice of the patient is lost, and this is definitely a focus of healthcare advocates. Narrative medicine is a discipline that has arisen to address this. Wikipedia defines narrative medicine as follows:
Narrative medicine is a wholesome medical approach that recognizes the value of people's narratives in clinical practice, research, and education as a way to promote healing.
Columbia University Medical Center Program in Narrative Medicine describes the program by saying it “fortifies clinical practice with the narrative competence to recognize, absorb, metabolize, interpret, and be moved by the stories of illness.” The fact that such a respected university has a program in Narrative Medicine shows that this field is gaining traction, as well it should. The story used to be a primary concern; now we have to name a new discipline in order to bring it back.
What is intuitively clear is that feeling that we are heard feels much better than not, and there are studies that show how this impacts our healing. Additionally, listening to the story can be lifesaving. Here is an article describing an incident that, while not lifesaving, was tremendously impactful in terms of preventing injury and pain.
by Rob Lamberts, MD
I was really anxious. My father’s legs were getting weaker and his pain was worsening. He had been having pain for quite a while, and that pain was often disabling in its severity, but the weakness was alarming.... Read more.
As “modern medicine” evolves, the amount of data available has grown exponentially. Narratives are increasingly neglected in favor of facts and figures, thought to be more scientific and objective. I cannot disparage all the knowledge we have gained, but the stories and our sense of human connection, “seeing” our patients and clients, cannot be sacrificed in its favor.
Here is a great story from Intima the Journal of Narrative Medicine written by a professor at the University of Washington, Josephine Ensign, an adjunct associate professor and a leader in the field of narrative medicine.
by Josephine Ensign
Late one November night in 2000, I drove myself to the ER at the UW Medical Center... My legs had been tingling and getting progressively benumbed over the past week. The numbness started in my toes and now reached my butt and groin region, plus my toes were turning blue..... Read more.
The take home message from this article is clear. We need supportive data, but we also need the patient narrative. Both are critical to health and healing, and something important will be lost if we ignore either one.
If you'd like to hear more from Josephine Ensign, she will be a speaker at the National Association of Healthcare Advocacy Consultant’s (NAHAC) National Conference in Seattle, November 16 - 18th, where we will be focusing on narrative medicine and interaction for the first afternoon. For more information about the conference, including additional speakers and registration, please visit the NAHAC website.
Next month, join me as I take a look at integrative medicine, another discipline that focuses on the patient / physician relationship, and is not well understood by most people.
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