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
The west coast has had so many smoky days! The fires have stretched from British Columbia to California, leading to skies that are worse than in Beijing! Thankfully, the sky is clearing, and hopefully our end of summer will not disappoint.
I have been thinking about patient empowerment this summer, and what what it actually means to truly empower someone.
The European Patients’ Forum says:
Patient empowerment is a process that helps people gain control over their own lives and increases their capacity to act on issues that they themselves define as important.
The World Health Organization defines empowerment as:
“A process through which people gain greater control over decisions and actions affecting their health” and should be seen as both an individual and a community process.
They go on to say:
Four components have been reported as being fundamental to the process of patient empowerment:
1) understanding by the patient of his/her role
2) acquisition by patients of sufficient knowledge to be able to engage with their healthcare provider
3) patient skills
4) the presence of a facilitating environment.
I think we can all get behind this, but what does it mean in real life? An example:
A woman had cancer that had been successfully treated once, and then had a recurrence, also successfully treated. She then had a second recurrence and had participated in several clinical trials, none of which were adequately treating the disease. When presented with options for further treatment, there was no weighting of the different options, no side-by-side comparison of the efficacy, risks, benefits, and comparison to non-treatment. And that age-old question that doctors hate and patients continue to ask did not come up “what would you do if it were you?”
This was/could be presented to her as evidence of patient empowerment—she was completely free to make whatever decision she wanted. But it was missing some vital parts of what is required for true empowerment:
2) acquisition by patients of sufficient knowledge to be able to engage with their healthcare provider
4) the presence of a facilitating environment
With 3 or 4 choices thrown out and not enough information to understand them, how is that empowerment? Further, the opinion of the doctor is valuable—I have yet to meet an oncologist who didn’t have an opinion about how they would move forward. They may not tell the patient, but it is there. Even the information they don’t know is helpful, because the patient can move on to other criteria to make a decision. Such as how much is this going to hurt or cause other side effects that negatively impact their quality of life?
In terms of a facilitating environment, this is a place a healthcare advocate can be truly helpful. Exploring the patient’s priorities and understanding their risks and benefits can provide the environment for engaged decision making. Ideally, the medical team is part of this process, but if not, healthcare advocates can fill the gap.
It is not empowerment to feel lost at sea. That is why we do this work.
As always, I would love to hear from you about your thoughts.
Our 2018 NAHAC National Conference is coming soon!
Advocacy as a Public Health Campaign: Understanding Historical and Modern Trends
When: Thursday, November 1, 2018 - Saturday, November 3, 2018
Where: The Marriott Hotel, Marina del Rey, CA
General Registration is now open - July 1-August 31
Pricing: NAHAC Full Members Only: $399
(includes Full, For Profit and Not-For-Profit Memberships)
General Public/Non-Member Registration: $435
For more information:
This month I wanted to share some thoughts I had after reading an excellent article in the New York Times Magazine about the “reinvention” of primary care delivery. It features the work of Dr. David Meltzer from the University of Chicago, who was a speaker at one of the national conferences of the National Association of Healthcare Advocacy Consultants (NAHAC), my professional organization as an advocate.
His research looked at the doctor-patient relationship, and whether longer appointments with a person’s primary care doctor (yes, all of them with the same doctor!) were economically sustainable.
Trying to Put a Value on the Doctor-Patient Relationship
by Kim Tingley
Photo Illustration by Weronika Gesicka
“Meltzer insists that doctors spending more time with their patients actually saves money. After a year in his clinic, for instance, patients have 20 percent fewer hospitalizations than their control-group counterparts. Because hospitalizations make up the greatest portion of these patients’ annual cost to Medicare, which averages $50,000 to $75,000 each, that reduction is worth several thousand dollars per person in the first year, or a combined several million dollars; by comparison, the doctors’ annual salaries add up to less than $1 million.”
Dr. Meltzer’s clinics run “leaner”—fewer people in the mix, and:
“To accomplish this feat, he employs the oldest, slowest, least-innovative health care delivery model imaginable: general practitioners who oversee almost all aspects of their patients’ care and, in doing so, come to know them personally.”
What I love about this article (besides the fact that it validates what I have been saying for years) is that it shows that this essential factor in healthcare actually makes a difference, and not just emotionally, which I think most of us believe. It makes a difference economically also, and it made a difference in the health of the patients.
It’s a win-win-win. Yes, I believe technology can help with communication and efficiency, and definitely with access to knowledge. And yes, the huge amount of medical knowledge requires subspecialization since no one can master all the information available in a single specialty. But there needs to be a quarterback that knows the patient and sees them as a whole. This is what I do as an advocate, but I believe that ideally the primary care doctor would fulfill that role and I would no longer be needed!
Now, how do we get the medical industrial complex to listen?
How Not to Say the Wrong Thing
by Susan Silk and Barry Goldman
Last year Elana Premack Sandler wrote this excellent explanatory article:
Ring Theory Helps us Bring Comfort In
by Elana Premack Sandler, LCSW, MPH
A few years ago, psychologist Susan Silk and her friend Barry Goldman wrote a piece about a concept they called the “Ring Theory.”
It’s a theory to help yourself know what to do in a crisis. If the crisis is happening to you, you’re in the center of the ring. If the crisis is not happening to you, you’re in one of the outer circles.
Here are the basic tenets paraphrased from Silk and Goodman’s article:
- Draw a circle. In this circle, write the name of the person at the center of the crisis.
- Now draw a larger circle around the first one. In this ring, put the name of the person next closest to the crisis.
- In each larger ring, put the next closest people. As Silk and Goodman state, “Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones.”
The concept is simple: “comfort in, dump out.”
I think disseminating this information will make the world a better place! It seems obvious when reading about the theory, but we have all likely been in the position of saying something similar that we later regretted. So please share this far and wide. As Susan Silk and Barry Goldman have said “And don’t worry. You’ll get your turn in the center ring. You can count on that.”
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.
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.”
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.
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