Healthcare Advocacy Partners

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

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Cuban Healthcare

10/11/2019

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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

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Patient Empowerment

9/12/2018

Happy end of summer everyone!

The west coast has had so many smoky days! The fires have stretched from British Columbia to California, leading to skies that are worse than in Beijing! Thankfully, the sky is clearing, and hopefully our end of summer will not disappoint.
I have been thinking about patient empowerment this summer, and what what it actually means to truly empower someone.

The European Patients’ Forum says:
Patient empowerment is a process that helps people gain control over their own lives and increases their capacity to act on issues that they themselves define as important.

The World Health Organization defines empowerment as:
“A process through which people gain greater control over decisions and actions affecting their health” and should be seen as both an individual and a community process.
They go on to say:
Four components have been reported as being fundamental to the process of patient empowerment:
1) understanding by the patient of his/her role
2) acquisition by patients of sufficient knowledge to be able to engage with their healthcare provider
3) patient skills
4) the presence of a facilitating environment.

I think we can all get behind this, but what does it mean in real life? An example:

A woman had cancer that had been successfully treated once, and then had a recurrence, also successfully treated. She then had a second recurrence and had participated in several clinical trials, none of which were adequately treating the disease. When presented with options for further treatment, there was no weighting of the different options, no side-by-side comparison of the efficacy, risks, benefits, and comparison to non-treatment. And that age-old question that doctors hate and patients continue to ask did not come up “what would you do if it were you?”

This was/could be presented to her as evidence of patient empowerment—she was completely free to make whatever decision she wanted. But it was missing some vital parts of what is required for true empowerment:

2) acquisition by patients of sufficient knowledge to be able to engage with their healthcare provider
AND
4) the presence of a facilitating environment

With 3 or 4 choices thrown out and not enough information to understand them, how is that empowerment? Further, the opinion of the doctor is valuable—I have yet to meet an oncologist who didn’t have an opinion about how they would move forward. They may not tell the patient, but it is there. Even the information they don’t know is helpful, because the patient can move on to other criteria to make a decision. Such as how much is this going to hurt or cause other side effects that negatively impact their quality of life?

In terms of a facilitating environment, this is a place a healthcare advocate can be truly helpful. Exploring the patient’s priorities and understanding their risks and benefits can provide the environment for engaged decision making. Ideally, the medical team is part of this process, but if not, healthcare advocates can fill the gap.

It is not empowerment to feel lost at sea. That is why we do this work.

As always, I would love to hear from you about your thoughts.
Sima

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?

The Circle of Kvetching

4/10/2018

I recently had a conversation with a good friend who has a family member with a serious illness. She told me that close friends of the family had called her in distress about this family member, as if she was expected to comfort them! This made me remember an article I read recently about “ring theory.” I sent this article to my friend and suggested she send it to all of her friends and family. It’s important information about how to cope with friends and family who are dealing with a crisis or death. I think it is so necessary to understand, that I wanted to spread the word to all of you. (It’s also been called the circle of kvetching, for those who can relate to the Yiddish term). Here is the original article:
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.”

Continue reading here....

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.”

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.

The Value of Connection

9/15/2017

I am something of a zealot for extolling the values of community and the need for personal connection. In my work as a healthcare advocate, I find myself urging new or established advocates to join the organizations for advocacy and to attend the conferences. I belong to 3 such organizations: National Association of Healthcare Advocacy Consultants, Washington State Health Advocacy Association, and the Alliance of Professional Health Advocates. It is worth every penny!

Why? Talking to your peers is invaluable in any profession, and in our line of work, there aren’t all that many of us. We get support, validation, and knowledge about our field when we meet and network with each other. This newsletter is about having a support network, building community, and more. It is about improving the quality of care for our clients, smoothing transitions, and getting business at the same time.

I have wonderful advocacy colleagues around the country, but was recently reminded of the value of connection because of a circumstance with a fellow advocate and her client. My colleague, Dianne Savastano, is the founder and principal of Healthassist, a healthcare advocacy firm based in Massachusetts. Dianne had worked with a member of a family on the east coast. When the father, who was living in Seattle at the time, began having health issues that were not resolving, the family asked Dianne if she had anyone in Seattle like her. She readily said that she did, and I was promptly connected to the father in Seattle.

This began a very pleasant and rewarding several months working with my client, whose goal stated at the outset was to move back to the east coast (besides resolving his health issues). We were able to make tremendous headway on the health issues, and only had to delay his move once.

And of course, Dianne and her associate, Anne Jacoby, sprang into action to make the move a carefully thought out and smooth transition, putting all the pieces into place on the east coast. This is the ultimate in coordination of care. I can completely relax knowing he is in the best of hands. Not to mention giving a shout out to his wonderful family both here in Seattle and on the east coast; they are the ultimate community and make it all possible!

This has been such a good example of the value of connection and the reason for community building that I will continue to promote it. I will do whatever I can to give the best service to all of my clients, while continuing to network and connect with my fellow advocates. As Helen Keller once said, ”We cannot accomplish all that we need to do without working together.”

What is a Good Death?

6/2/2017

I have been thinking a lot about end of life planning. I recently started helping people with this aspect of their lives by acting as a healthcare power of attorney for those who need a non-family member in that role. And yes, I intentionally italicized "of their lives."

A good friend’s mother recently died at age 94; she was well loved by her family, and very well cared for despite living for many years disabled by a stroke. My friend and his family were able to be with her in an inpatient hospice setting, it was clear she did not want any extraordinary measures taken to prolong the inevitable, and they could sit and hold her hand as she passed. Sounds pretty ideal, right? And despite glitches along the way, it seems so.

As we were discussing it after her shiva (the Jewish period of 7 days of the acute phase of mourning—or less depending on your adherence to classic protocols), it occurred to me that there are 3 general death scenarios. The one above is the clear scenario that most of us envision as “a good death”.

Putting in Place An A-Team of Allies
by Judith Graham

Another scenario is where a family member dies suddenly, unexpectedly, and the family and friends are left in shock, having had no time to process it before it happens. Interestingly, this is not necessarily a “bad death” for the deceased, but it certainly is hard for the family.

Don't Wait: Now's the time to discuss end-of-life-care
by Robert Powell

The third general scenario is where some or all of the participants (including the “patient”) have not accepted that death is a part of life (thus the italics above). The hard discussions of what the person wants at the end of life, when they want to push on, when they want to call it quits, where they want to die, who they want with them—all of the factors that go into a “good death”—have not been discussed, or the family ignores the wishes and countermands them. Or worse, there is disagreement among family members about the treatment course.

Why you need a Healthcare Proxy and how to choose one
by Debbie Reslock

I cannot claim to have the lock on what a good death looks like to others, but I do know what can be done to lessen the stress felt by families going through this passage. In the first scenario, end of life wishes were known and discussed, and it was the end of a good long life. In the second scenario, there was likely no preparation, and nothing can mend the shock felt by the family except time. In the third scenario, there is a lot of preparation that could be done to prepare for and avoid conflict and stress.

This is why I advise everyone to have a healthcare power of attorney designated and an advance directive in place. We can make a death better for both the patient and the family if we confront this before it is needed. I have been through two of the three scenarios personally, and I vastly prefer the first one.

Planning for the End

3/31/2017

As spring has arrived, I have been immersed in something that involves the end of things rather than the beginning. Recently, I started a new service helping people plan for what they want at the end of their lives (i.e. helping them figure out what they want in their advance directive), while also serving as the healthcare power of attorney for those who do not have or do not want a family member to do so.
Writing this newsletter was spurred by an article I read recently by an attorney—no longer practicing—who holds the position that lawyers have no business in the field of advance care planning.

Lawyers have no business in the field of advance care planning
by Phyllis Coletta
The author of the article, Phyllis Coletta, says:
Here’s what happens when a lawyer gets involved in advance care planning: They tell you to appoint a health care agent, but don’t stress that you must talk to that person and all other loved ones about your values and range of decisions.
And:
My ER doc friends tell me there is no document that comes close to the help of a well-informed family at the bedside.

I often tell people that I thought my family was the norm in terms of advance care planning. (Why I thought this was the case is a mystery to me!) My parents had a very thorough advance directive, which we all had copies of, and we all knew who the agents in charge were. When crises occurred, we could read the document to figure out what each parent wanted for their care. Further, my siblings and I are very close to each other and would talk frequently to ensure their needs were being met. Also, my parents had arranged for themselves financially, which reduced the burden on us as their children.

When I began researching this kind of work, I was surprised by what I found. I was astonished that potential clients did not realize that I needed to spend quite a few hours with them to get to know them, and what they would like to happen if they are unable to speak for themselves. In fact, I tell them that I am channeling them, so it is important to know who I am channeling! Isn’t that what we all want—someone who will carry out our wishes as close to what we would do for ourselves as possible?
What have I found instead?

An elderly couple who have designated their 3 children to have equal status for decision making, and who expect them to vote if they disagree and have the decision made by majority rule. Red flags right and left. Don’t do this, anyone.

A family who rewrote the document delineating desire or not for CPR so it would be construed by the hospital as: resuscitate me if I am dead (Cardiac arrest) but don’t do anything if I am alive and failing, toward the point where I need an intervention.

Both of these situations are due to lack of spending the time in a nonconfrontational way to explain, explore, and figure it out with those who you love or have entrusted with your care.

I want to leave you with some really great resources for figuring out your or your family’s end of life decisions:
5 wishes
https://www.agingwithdignity.org/
gyst.com
https://www.gyst.com/
death over dinner
http://deathoverdinner.org/
the conversation project
http://theconversationproject.org/
This is a conversation that does not need to be painful, sad, or morbid. It can create connection, and avoid a lot of pain in the end!

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Harvesting Healthcare

Cuban Healthcare

Patient Empowerment

2018 NAHAC National Conference

Our 2018 NAHAC National Conference is coming soon!

The "Reinvention" of Primary Care Delivery

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

The Circle of Kvetching

Healthcare Gone Awry

The Value of Connection

What is a Good Death?

Planning for the End

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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