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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!

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.

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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

In a Medical Crisis, Call an Advocate!

A Look at Narrative Medicine

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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