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
When Aurora described the care she received in Cuba, and the laws regarding care of people with disabilities, I almost cried! It was so superior to what we have in the USA. Health Advocates spend so much of our time trying to figure out how to get the best services for our clients, services that should be available to all. I decided I had to write about it. Naturally, the story is a bit more complex than the rosy view I imagined.
The Cuban Constitution guarantees protections for workers who have a disability, illness, or just due to advancing age. In the case of their death, those same protections apply to their family. The state protects “through social assistance, the elderly without resources or shelter, and any personnel unfit for work who lack family members in conditions to render assistance”. There are laws guaranteeing a safe workplace, medical care, subsidies, and retirement in case of temporary or permanent disability. The free medical care for all in Cuba is legendary.
Cuba has the best health care in any Latin American country. Their infant mortality rate is better than ours, and despite the negatives, they have a similar life expectancy to us in the US. The negatives cannot be ignored, however. There is crumbling infrastructure, poorly paid doctors, and the system is further stretched by doctors who are sent throughout Latin America, where they can make better pay, leaving those at home to work harder for less money.
And, despite the glowing Cuban Constitution, life for those with disabilities is not so good. Although the Cuban State guarantees the right to free education without discrimination, there is no educational policy nor laws designed to protect people with differing abilities.
According to official figures, approximately 3% of the Cuban population lives with some limitation that keeps them from participating in the labor market, and as a result, they cannot access the funds to confront the many obstacles they face in life.
Task for Alejandro Castro: Protecting Cuba's Disabled by Juan Juan Almeida
Though we enjoy some benefits, persons with severe disabilities often feel neglected and marginalized when it comes to this issue. Our limitations also make it more difficult for us to find a solution to the problem.
Being Disabled in Cuba: Waning Dreams by Mercedes Gonzalez Amade
Cuba, despite its famed legions of highly trained doctors, is no health-care paradise. Most hospital facilities for Cubans have peeling paint, missing light bulbs, and electrical and water outages.
Doctors, short on supplies, are forced to reuse latex gloves, and patients bring their own sheets for beds. Medicines are scarce, in part because of the long-standing United States embargo against the island. The island's tourist facilities, however, are another world.
According to Cubanacan Tourism and Health, the umbrella organization charged with promoting Cuba's health tourism facilities, the island last year attracted 3,500 health tourists, a number that is growing by 20 percent a year.
Promise of Cures lures tourists to Cuba by Laurie Goering
The Cuban healthcare system, borne out of its revolutionary socialist ideology, regards accessibility to healthcare as a fundamental right of its citizens. It focuses heavily on a preventative approach to medicine and offering the simplest check-up to the most complex surgery, free of charge. Dental care, medicines and even home visits from doctors are all covered by the system.
Is the Cuban Healthcare System really as great as people claim? by Rich Warner
We still have so much work to do to make it the system we all want to live in. Do you know anyone who has experienced the medical system in Cuba? I’d love to hear more first hand stories.
Best of Health,
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.
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.
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."
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.
This is the last newsletter where I will focus specifically on upstreamists, and I want to do so around a theme: end of life planning. I would bet most of you don’t know that April 16th was National Healthcare Decisions Day (NHDD). From their website:
“National Healthcare Decisions Day(NHDD) exists to inspire, educate and empower the public and providers about the importance of advance care planning. NHDD is an initiative to encourage patients to express their wishes regarding healthcare and for providers and facilities to respect those wishes, whatever they may be.
The theme for 2016 is "It Always Seems Too Early, Until It’s Too Late."
"NHDD exists as a 50-state annual initiative to provide clear, concise, and consistent information on healthcare decision-making to both the public and providers/facilities through the widespread availability and dissemination of simple, free, and uniform tools (not just forms) to guide the process. NHDD entails 50 independent, but coordinated, state and local events (necessitated by the difference in state laws and dynamics) supported by a national media and public education campaign.
A key goal of NHDD is to demystify healthcare decision-making and make the topic of advance care planning inescapable. On NHDD, no one in the U.S. should be able to open a paper, watch TV, view the internet, see a physician or lawyer, or go to a healthcare facility without being confronted with the topic of advance care planning.
Among other things, NHDD helps people understand that advance healthcare decision-making includes much more than living wills; it is a process that should focus first on conversation and choosing an agent."
I am aware that it seems incredibly onerous to sit down and think about end of life planning, but there are a lot of resources out there to simplify it. In Washington State, you don’t have to have a lawyer to sign a Healthcare Power of Attorney document (aka healthcare proxy)—in fact you don’t even need a notary. You can go online, get documents, print them out, fill them in, and give them to your loved ones! Please do this for the sake of those you care about if not for yourself.
And now for the upstreamists. The people and organizations I am going to highlight are all working to make this subject accessible to everyone, not just lawyers. The goal is to change the thinking of our society that this is just not something to talk about, or that there will be time later, but rather to take action now so that your individual wishes can be known.
The first organization I want to mention is Get Your Sh*t Together, founded by Chanel Reynolds. She founded the organization after the tragic and sudden loss of her husband in my neighborhood! Here is the story from the New York Times. This is a stunning example of “it always seems too early until its too late”.
by Ron Lieber
The next organization I want to feature is Death over Dinner, started by Michael Hebb, who found out about the difficulty of helping those at the end of life when he met two doctors on a train ride. The doctors were dismayed about our healthcare system and relayed this startling fact:
Nearly 75% of Americans want to die at home, yet only 25% of them do.
His organization makes it almost fun to have these conversations:
"Send an invite to loved ones, and then set the table to start talking about end-of-life care and how we want to live the final days of our lives. We'll provide the tools and tips to get the conversation started. You choose the guests and the menu, and let the conversation and the wine flow."
Michael Hebb on TEDMED ~ What Happens When Death is What's for Dinner
Over several months, a vision emerged for a grassroots public campaign spanning both traditional and new media that would change our culture. The goal: to make it easier to initiate conversations about dying, and to encourage people to talk now, and as often as necessary, so that their wishes are known when the time comes.
All of these sites have easily accessible documents for anyone to use. And I would be remiss if I didn’t mention The Five Wishes from Aging with Dignity, a website that offers downloadable living wills that help document and describe your desires for end of life care.
If you want any more information, let me know. Your family and your doctors will thank you.
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