Category: Healthcare

Harvesting Healthcare

10/16/2019

Photo © AP/Reuters

It’s hard to believe how time flies; we are rapidly approaching the end of October!

Lately I have been thinking about what compels us to do what we do. Where does our drive come from?

About 10 years ago I went to a conference given by Rachel Naomi Remen, doctor and author, who is a pioneer in the field of clinician well-being. I had read some of her books (Kitchen Table Wisdom and My Grandfather’s Blessings) and realized there were other physicians who felt like I did. One of the exercises she did during the conference was to ask participants how old they were when they first realized they wanted to take care of others: less than 5 years old, less than 10 years old, etc. Almost all of the physicians and nurses at the conference fell into the years between 5 and 10. I was younger than 5, and this realization led me to become a doctor. I also became a healthcare advocate when I saw the healthcare system failing to take care of us.

Some of my most profound moments of change have happened when I become aware of injustice, inequity, or crimes against humanity that are committed in the healthcare arena. I was devastated when I read a 2007 blog post by Anna Baltzer, a Jewish American woman working to end the occupation of Palestine. Her friends were trying to take their 6-month-old baby, who was having trouble breathing, from their Palestinian town to their Palestinian hospital in the West Bank. They were stopped at Atara checkpoint by an Israeli soldier who kept them far longer than was necessary, causing the baby to die at the checkpoint.

Earlier this year my book group read Never Let Me Go by Kazuo Ishiguro. This dystopian science fiction novel is about (spoiler alert!) a world where human clones are created so they can donate their organs as young adults. The book was incredibly distressing, and I was deeply affected by it. This is the epitome of medical care gone awry. But it’s just a novel, right?

Yes, it’s a novel, but actually, organ harvesting is happening right now. The difference is that people are not being cloned for the purpose. On June 17, 2019, the China Tribunal delivered its Final Judgement and Summary report on forced organ harvesting from prisoners of conscience in China.

According to the tribunal, China has been accused of organ harvesting since 2000, when it was forcibly removing the organs of death row prisoners. China claimed it was voluntary to redeem prisoners for their crimes, and supposedly stopped in 2015. However, organ transplantation has increased tremendously in China, and medical tourists have been going to China to purchase organs. There appeared to be a larger supply of organs than could be explained by executed criminals alone, and the tribunal set out to investigate.

The summary is:

“forced organ harvesting has been committed for years throughout China on a significant scale and that Falun Gong practitioners have been one - and probably the main - source of organ supply. The concerted persecution and medical testing of the Uyghurs is more recent and it may be that evidence of forced organ harvesting of this group may emerge in due course. The Tribunal has had no evidence that the significant infrastructure associated with China’s transplantation industry has been dismantled and absent a satisfactory explanation as to the source of readily available organs concludes that forced organ harvesting continues till today.”

The estimate is that hundreds of thousands of people have been used as organ donors, and that the victims do not survive. Nor is there any intention that they survive, as surgeries include operations where hearts and kidneys are removed for transplant.

“In regard to the Uyghurs the Tribunal had evidence of medical testing on a scale that could allow them, amongst other uses, to become an ‘organ bank’. The world is already watching their interests and their geographical location – although very large - may render it possible to lend them support more easily than for the Falun Gong who are dispersed throughout the country.”

They go on:

“Governments and any who interact in any substantial way with the PRC including:
• Doctors and medical institutions;
• Industry, and businesses, most specifically airlines, travel companies, financial services businesses, law firms and pharmaceutical and insurance companies together with individual tourists,
• Educational establishments;
• Arts establishments
should now recognize that they are, to the extent revealed above, interacting with a criminal state.”

As it is, the Uyghurs are being subjected to incredible oppression, human rights abuses, forced into re-education camps, and what are essentially concentration camps. The murder of humans, used as donor banks for the lives of others, is unconscionable. It is the most heinous contamination of the discipline of medicine. These are truly crimes against humanity.

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

So why am I devoting an entire newsletter to this? Because sometimes the highest form of advocacy for health is political action.

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

To the health of everyone everywhere.

Sima Kahn, MD
Founder, Healthcare Advocacy Partners

Cuban Healthcare

10/11/2019

During a recent weekend, I spent some time with a visiting poet and author, Aurora Levins Morales. A native Puerto Rican, she spent quite a bit of time in Cuba as a child, but now calls the San Francisco Bay area her home. In 2017, Aurora suffered a stroke after several previous head injuries, and underwent rehabilitation in Cuba.

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

Even more disturbing is the rise of medical tourism where foreigners see a completely different medical system than most Cubans do.

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

On the flip side, there are positive stories. This one is written by a doctor who went to medical school in Cuba. He is answering, from his point of view, the question “is the Cuban healthcare system really as great as people claim?

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

My conclusion is that Cuba is not nirvana when it comes to healthcare, and the situation for those with disabilities is not as great as you would think based on the constitution. So, while I am disappointed, there are some positive steps worth noting. I feel incredible pain and anger about the difficulties I have in getting even meager services for my clients. I can only imagine how they feel having to live it.

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

2018 NAHAC National Conference

7/20/2018

Our 2018 NAHAC National Conference is coming soon!

Featuring Keynote Speaker Dr. Gary Jacobs
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:
http://nahac.memberlodge.com/2018-NAHAC-Conference-Daily-Schedule

The "Reinvention" of Primary Care Delivery

5/25/2018

Happy almost summer! Being a sun worshipper, I am always energized by the longer days and sunnier weather, although in Seattle we are definitely not done with rain just yet.

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

From the article :

“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?

Healthcare Gone Awry

3/28/2018

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.

In a Medical Crisis, Call an Advocate!

1/12/2017

Happy holidays to all of you!

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.

What went not so well?

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!

A Look at Narrative Medicine

7/2/2016

I hope you are all having as glorious a summer as we are having in Seattle. Its sunny, green, and a great temperature!

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.

An Avalanche of Data Buries the Patient Story
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.

Medical Maze
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.

Third Leading Cause of Death?

6/23/2016

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.

End of Life Planning with Upstreamists

5/2/2016

Happy spring everyone! Here in Seattle the weather is unseasonably gorgeous, and it makes everything better.

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”.

A Shocking Death, a Financial Lesson and Help for Others
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

And finally, The Conversation Project began in 2010, when Ellen Goodman, a well known journalist, and a group of colleagues and concerned media, clergy, and medical professionals gathered to share stories of “good deaths” and “bad deaths” within their own circle of loved ones.

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.

Going Upstream - Iora Health

3/5/2016

Happy almost spring, although many of you are still being hit with snow and ice!

I want to continue the theme I began 2 months ago where I discuss “upstreamists”, those who are “going upstream” to find the cause of problems in our healthcare system, and then working directly to create change. Last month I profiled Health Leads, a nonprofit organization that is providing information and connection for low-income patients, as well as providing access to many wrap-around services that affect health and wellbeing, such as having adequate food, transportation, and heat in the winter.

Yesterday I had a very stimulating conversation with a young physician who had just finished medical school in the UK. He felt drawn to medicine by his desire to help others, like most doctors, but he did not gravitate to a particular specialty. Instead, he’s been traveling around the US talking to upstreamists in order to tap into their experiences. His network includes those that create technological tools that try to fix some discreet dysfunctional piece of healthcare, rather than affecting the whole system. All of the projects he told me about were lovely little gems. But there is a problem with creating beautiful gems.

When you have something that is rotten underneath, applying beautiful gems to it does not cure the problem; it remains rotten. We need to look deeper to figure out what we can do to impact our healthcare system, from the inside out.

Dr. Rushika Fernandopulle of Harvard University, is doing just that with Iora Health. I’ve been following him for a number of years. Here is what Iora Health says about itself:

We’re changing health care from the ground up.
We believe better health care starts with better primary care. Our simple yet radically different approach to restoring humanity to health care is three-fold: Team-based care that puts the patient first, a payment system based on care, not billing codes and technology built around people, not process. ……….
Our care team, which includes a dedicated advocate for each patient, works together to treat the whole person. We see people when they’re sick, but also when they’re well, so that we can keep them healthy. Here, the environment is caring and patients have a voice. It’s our job to give them everything they need to live happier and healthier lives.

Here is a fabulous and inspiring talk by Dr. Fernandopulle, who discusses how and why we need to change the healthcare system.

Here is a short version, but I really urge you to watch the longer one—its way more inspiring.

And a freebie thrown in: The Hot Spotters is the seminal article on change in the healthcare system, by Dr. Atul Gawande, published in the New Yorker. This is a must read in my opinion, to know where the “rot” is. It would not be an exaggeration to say that this article changed my life.

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Our 2018 NAHAC National Conference is coming soon!

Trying to Put a Value on the Doctor-Patient Relationshipby Kim TingleyPhoto Illustration by Weronika Gesicka

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Trying to Put a Value on the Doctor-Patient Relationship
by Kim Tingley
Photo Illustration by Weronika Gesicka