Category: Healthcare

Planning Considerations for Elder Orphans and Solo Agers

8/6/2021

(PAST EVENT)
Free Upcoming Virtual Event
Planning Considerations for
Elder Orphans and Solo Agers
Wednesday, August 11th, 2021
1pm PST on Zoom

Join us for a riveting virtual panel discussion with Sima Kahn, MD of Healthcare Advocacy Partners, and Lisa Mayfield of Aging Wisdom.

We will discuss who solo agers are, the intricacies and issues of life planning for solo agers, and how to choose a healthcare power of attorney that you can trust with your decisions.

Planning ahead is essential for the well-being of solo agers, and there is no better time than now to begin the process of managing your own care, choosing your support community, and setting yourself, and those you love, up for success.

Twelve million adults over age 65 live alone.
That is 27% of the population–the highest rate in the world.
The majority are women.
By age 75, the rate of women living alone rises to 44%.
-- Sara Zeff Geber, Forbes

Sima Kahn, MD
Founder
Healthcare Advocacy Partners

In 2009, Sima founded Healthcare Advocacy Partners to fill a critical gap in our healthcare system. A board certified physician, Sima Kahn has always been a passionate advocate for her patients.

With 25 years of Obstetrics and Gynecology practice, Sima’s breadth of clinical experience has given her a deep understanding of the complexities of the medical system.

Lisa Mayfield
Founder and Co-Principal
Aging Wisdom

Lisa Mayfield founded Aging Wisdom® in 2003. She is trained and licensed as a mental health counselor, geriatric mental health specialist, and is a certified Aging Life Care Professional.

Lisa brings over two decades of experience supporting and finding hope for individuals and families impacted by Alzheimer’s disease and related dementias.

Doing All I Can to Heal

7/8/2020

I have been trying to write this newsletter for a month now, but the despair of this moment we are in has kept me from doing it. What can I say that every single business / celebrity / political figure / news reporter who is worth anything hasn’t already said?

Racism is an evil. Racism is a public health emergency. There must be a change in how we police our communities.

I have partly kept my sanity by watching the late-night comedy shows. Their truth telling, as well as their ripping to shreds of the current administration, are deeply satisfying. I am heartened by all the changes happening that are so long in coming—and those changes are not nearly enough. I think the fact that we are all captive audiences due to the pandemic has helped white people see in a way they have previously chosen not to.

I have read and watched videos of many anti racism scholars, writers and speakers.

What I Recommend
Ijeoma Oluo - So you want to talk about race

Ibram X. Kendi - How to Be an AntiRacist

Robin DiAngelo - White Fragility

I especially recommend this absolutely stunning and moving impromptu sermon by author Kimberly Jones. Jones gives a powerful, eloquent speech that explains in detail why this is happening (racism across 450 years) and the difference between protesting, rioting and looting in 2020.

And this article in the New York Times, written by Darren Walker, president of the Ford Foundation.

Are You Willing to Give Up Your Privilege?
Philanthropy alone won’t save the American dream.

This is something I have been thinking and talking about to my peers, my family, and my community. What am I willing to give up?

I have been thinking about it in a very concrete way. As a physician, what would I be willing to do (or to give up) had I been or if I should be present when someone is calmly snuffing out someone’s life?

I am committed, essentially programmed, by an inborn quality and by my medical training, to save lives, to do all I can to try to heal. Like me, this is true of most healthcare workers.

This is why you have seen such incredible sacrifice on the part of all healthcare workers to take care of people with COVID-19, when that care becomes a risk to themselves, their own families, and their communities.

What am I willing to give up?

I am willing to give up the ease of access I have to the highest level of medical care if it means that everyone now has access to life-saving and preventative medical care.

I am willing to pay higher taxes if it means we have social services for all that need them—housing, mental health services, food, and a host of other needs.

I am willing to stand up to systemic racism and violence against black and brown bodies to ensure that we all have equal opportunities in this life.

Am I willing to give up my life?
This is the scene I replay over and over in my mind. Is there a chance that a 60 something white woman, a physician, could have used my privilege to get this to stop before it was too late, without getting shot? In my screenplay I am successful. That’s the benefit of me being the author.

Today I watched this clip from Democracy Now.

Noura Erakat, a well-known Palestinian human rights lawyer who teaches at Rutgers, is interviewed and speaks passionately about her cousin who was murdered at a check point in the West Bank. It reminded me of “home."

Her cousin bled for 1.5 hours without being taken to a hospital. The same question ran through my head. If I had been there what would I have done?

I can add my voice to the many who have said racism is a health emergency. We are all dying from it. Are those of us who have it willing to give up our privilege? Are you? The answer has to be yes.

I Can Help

4/20/2020

As I work from home, I've had more time to reflect on the challenges we all face during this time of social upheaval. While my life hasn't changed significantly, I often work from home, I know that it has upended the lives of my friends and family.

It is finally clear how fragile our healthcare system is, and that our leaders are struggling to meet the demands of this pandemic. We all feel worried, nervous, anxious, and overwhelmed. While there is a breadth of daily information on aspects of the outbreak, it isn't always clear how that may affect you in your personal situation.

This is where I can help.

As a healthcare advocate, I want to be there for you and your family, to answer your specific questions, and to provide guidance, research, answers, and compassion. Whether you are facing pregnancy during the coronavirus and have concerns, or you are caring for an elderly parent and want to ensure you are both staying safe, or you are having health complications and feel you aren't being heard. I want to help you.

I am expanding my services to include one-hour consultations to provide answers to any immediate questions, offer counseling and guidance about your concerns, and research options and opportunities to ensure you feel secure in your health, and the health of those you love.

Schedule your session today. I am here for you.

Schedule a Consultation

The Intervention

1/17/2020

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
By Dan Gorenstein and Leslie Walker - January 8, 2020

As reported in the article, economist Amy Finkelstein began a randomized controlled trial at the Massachusetts Institute of Technology in 2014. Finkelstein wanted to see if Dr. Brenner's intervention was working. The results showed no effect in terms of the rates of hospitalization or money saved. To say this is disappointing would be an understatement. However, it made me think about the goals of the intervention, and what those goals say about our medical system, as well as society in general.

I agree that the cost of care needs to be sustainable, but shouldn’t the primary goal be better health and better life? It seems to me that the type of intervention done by Dr. Brenner, which dealt with evidence-based addiction treatment, housing, and mental health services, takes a few generations to show cost savings. Even twenty years may not be enough to show the effect of addressing everything that contributes to the cycle of poverty, addiction, and poor health.

One way to combat this is by addressing income inequality in our country. Current thought suggests that a guaranteed income would go a long way to solving many poverty-related health problems. Even more importantly, it has a great answer to the question of how we pay for it.

"We are the wealthiest nation in the world. The question isn’t, can we pay for it? But, do we want to? This question is really about who we fundamentally want to be as a nation. Do we want to ensure that everyone has access to the basic human rights that cash can enable? Or do we want to continue to be a country where people are saddled with medical and education debt, working multiple part-time jobs to make ends meet, and living on the street because the rent’s to damn high?"

‘Let’s Give Them Money’: Could Guaranteed Income Be a Solution to Wealth Inequality?

Let's tie together the two issues: how does income inequality affect health equity? You will see that drug addiction and healthcare access are cited as major problems.

“It is simply unacceptable in a country as wealthy as ours that so many people lack sufficient income to pay for health care, housing or even food,” Besser asserted.  “We need to address income inequality if we truly want everyone to have a fair and just opportunity to live the healthiest life possible.”

How Income Inequality Affects Health Equity, Patient Experiences

And finally, there is evidence that increasing the minimum wage has a tremendous health benefit: it results in a decrease in suicide rates. Of course this health benefit comes at a cost. I have no idea if the cost/benefit ratio pencils out, nor do I care. I want fewer people to die by suicide. This is what I mean about realigning our goals and metrics for the healthcare system. Sometimes the right thing costs more money.

"When controlling for changes in a state’s economy and welfare policies, the researchers estimated that a $1 increase in the minimum wage corresponded with a 3.5 percent decrease in the suicide rate for those with a high school education or less. Without some of the controls, the decrease in the suicide rate was 6 percent. The effect was most pronounced during times of high unemployment.”

Minimum Wage Raises Could Lower Suicide Rates, Study Says

Perhaps you'll agree that cost alone is not the measure we should be using. Some of our neighbors will need more help than others. And it benefits all of us when everyone is supported.

I would love to know what you think about this topic. As always, I welcome your comments.

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

Harvesting Healthcare

10/2/2019

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

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

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

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!

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Planning Considerations for Elder Orphans and Solo Agers

Doing All I Can to Heal

I Can Help

The Intervention

Reduce Health Costs By Nurturing The Sickest? A Much-Touted Idea Disappoints
By Dan Gorenstein and Leslie Walker - January 8, 2020

Cuban Healthcare

Harvesting Healthcare

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

Healthcare Gone Awry

In a Medical Crisis, Call an Advocate!

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Reduce Health Costs By Nurturing The Sickest? A Much-Touted Idea DisappointsBy Dan Gorenstein and Leslie Walker - January 8, 2020

Our 2018 NAHAC National Conference is coming soon!

Trying to Put a Value on the Doctor-Patient Relationshipby Kim Tingley

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Reduce Health Costs By Nurturing The Sickest? A Much-Touted Idea Disappoints
By Dan Gorenstein and Leslie Walker - January 8, 2020

Trying to Put a Value on the Doctor-Patient Relationship
by Kim Tingley