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.
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?
I want to leave you with some really great resources for figuring out your or your family’s end of life decisions:
death over dinner
the conversation project
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!
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?
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!
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.
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.
Happy summer everyone. I am relishing the beautiful weather and flowers, as well as the fresh vegetables and long hours of daylight!
I have been thinking a lot recently about how things are not always as they appear; often you need to dig a little deeper to find out the truth. So much of what we read these days is hype or selective reporting. Sadly, this is extremely true of medical information. I recently read an article about how Big Pharma (the pharmaceutical industrial complex) has made this into an art of sorts, and that if you take what you hear at face value, often you will be deceived.
More importantly, this topic came to mind because of an article that has received a tremendous amount of press in the media after it was published in the British Medical Journal.
Medical Error - The Third Leading Cause of Death
by Martin Makary and Michael Daniel
Dr. Martin A. Makary of Johns Hopkins and research fellow Michael Daniel wrote a paper stating that medical error is the third leading cause of death in the US. This is quite alarming, and in medical circles has led to quite a bit of head scratching—this is not what any of us have experienced, so is it really the case? How could we be so unaware of the third leading cause of death?
Prior to this paper the data used to discuss rate of death from medical errors was from 1984. Dr. Makary does state that the 1984 study was not great science, however, they did find several good studies, reviewed the data, and came up with the figure of 251,000 deaths per year in the US from medical error.
It has been pointed out that Dr. Makary used 4 observational studies on incidents that occurred between 2000 and 2008, not exactly an accurate reflection of what the rate is now. More importantly, the patients in those 4 studies were dominated by inpatients in the Medicare community, a more risk prone group than the general public. In fact, the authors say “the assumptions made in extrapolating study data to the broader U.S. population may limit the accuracy of our figure”. Aha, maybe it’s not as accurate as it appears in a splashy headline in our newspaper.
Check out the analysis and rebuttal of the science in the article below.
ANALYSIS - Re: Medical Error - The Third Leading Cause of Death
by Kaveh G. Shojania
Cause of death is often multifactorial; a terminally ill patient may experience a medical error, but their underlying disease may be the majority of the cause of death. There is a huge and often unrecognized difference between an error and a bad outcome. All medical treatment has a risk of bad outcome even when no errors occur.
This is summed up very well in an article from Vinay Prasad on Stat News. "While the report in the BMJ — and the press release promoting it — sounded like researchers were on to something new, they were merely reminding us of old data."
Don't Believe What You Read on New Report of Medical Error Deaths
by Vinay Prasad
No one would disagree with the efforts to eliminate medical errors to the highest degree possible, and like many important aspects of healthcare, this is one that is underfunded, understudied, and often swept under the carpet. Yet, to overstate the incidence does not help the effort to decrease medical error.
As advocates we will never stop working to prevent medical errors from occurring, but we need to be careful not to see them around every corner where they may not exist.
Happy spring everyone! Here in Seattle the weather is unseasonably gorgeous, and it makes everything better.
This is the last newsletter where I will focus specifically on upstreamists, and I want to do so around a theme: end of life planning. I would bet most of you don’t know that April 16th was National Healthcare Decisions Day (NHDD). From their website:
“National Healthcare Decisions Day(NHDD) exists to inspire, educate and empower the public and providers about the importance of advance care planning. NHDD is an initiative to encourage patients to express their wishes regarding healthcare and for providers and facilities to respect those wishes, whatever they may be.
The theme for 2016 is "It Always Seems Too Early, Until It’s Too Late."
"NHDD exists as a 50-state annual initiative to provide clear, concise, and consistent information on healthcare decision-making to both the public and providers/facilities through the widespread availability and dissemination of simple, free, and uniform tools (not just forms) to guide the process. NHDD entails 50 independent, but coordinated, state and local events (necessitated by the difference in state laws and dynamics) supported by a national media and public education campaign.
A key goal of NHDD is to demystify healthcare decision-making and make the topic of advance care planning inescapable. On NHDD, no one in the U.S. should be able to open a paper, watch TV, view the internet, see a physician or lawyer, or go to a healthcare facility without being confronted with the topic of advance care planning.
Among other things, NHDD helps people understand that advance healthcare decision-making includes much more than living wills; it is a process that should focus first on conversation and choosing an agent."
I am aware that it seems incredibly onerous to sit down and think about end of life planning, but there are a lot of resources out there to simplify it. In Washington State, you don’t have to have a lawyer to sign a Healthcare Power of Attorney document (aka healthcare proxy)—in fact you don’t even need a notary. You can go online, get documents, print them out, fill them in, and give them to your loved ones! Please do this for the sake of those you care about if not for yourself.
And now for the upstreamists. The people and organizations I am going to highlight are all working to make this subject accessible to everyone, not just lawyers. The goal is to change the thinking of our society that this is just not something to talk about, or that there will be time later, but rather to take action now so that your individual wishes can be known.
The first organization I want to mention is Get Your Sh*t Together, founded by Chanel Reynolds. She founded the organization after the tragic and sudden loss of her husband in my neighborhood! Here is the story from the New York Times. This is a stunning example of “it always seems too early until its too late”.
A Shocking Death, a Financial Lesson and Help for Others
by Ron Lieber
The next organization I want to feature is Death over Dinner, started by Michael Hebb, who found out about the difficulty of helping those at the end of life when he met two doctors on a train ride. The doctors were dismayed about our healthcare system and relayed this startling fact:
Nearly 75% of Americans want to die at home, yet only 25% of them do.
His organization makes it almost fun to have these conversations:
"Send an invite to loved ones, and then set the table to start talking about end-of-life care and how we want to live the final days of our lives. We'll provide the tools and tips to get the conversation started. You choose the guests and the menu, and let the conversation and the wine flow."
Michael Hebb on TEDMED ~ What Happens When Death is What's for Dinner
And finally, The Conversation Project began in 2010, when Ellen Goodman, a well known journalist, and a group of colleagues and concerned media, clergy, and medical professionals gathered to share stories of “good deaths” and “bad deaths” within their own circle of loved ones.
Over several months, a vision emerged for a grassroots public campaign spanning both traditional and new media that would change our culture. The goal: to make it easier to initiate conversations about dying, and to encourage people to talk now, and as often as necessary, so that their wishes are known when the time comes.
All of these sites have easily accessible documents for anyone to use. And I would be remiss if I didn’t mention The Five Wishes from Aging with Dignity, a website that offers downloadable living wills that help document and describe your desires for end of life care.
If you want any more information, let me know. Your family and your doctors will thank you.
Happy almost spring, although many of you are still being hit with snow and ice!
I want to continue the theme I began 2 months ago where I discuss “upstreamists”, those who are “going upstream” to find the cause of problems in our healthcare system, and then working directly to create change. Last month I profiled Health Leads, a nonprofit organization that is providing information and connection for low-income patients, as well as providing access to many wrap-around services that affect health and wellbeing, such as having adequate food, transportation, and heat in the winter.
Yesterday I had a very stimulating conversation with a young physician who had just finished medical school in the UK. He felt drawn to medicine by his desire to help others, like most doctors, but he did not gravitate to a particular specialty. Instead, he’s been traveling around the US talking to upstreamists in order to tap into their experiences. His network includes those that create technological tools that try to fix some discreet dysfunctional piece of healthcare, rather than affecting the whole system. All of the projects he told me about were lovely little gems. But there is a problem with creating beautiful gems.
When you have something that is rotten underneath, applying beautiful gems to it does not cure the problem; it remains rotten. We need to look deeper to figure out what we can do to impact our healthcare system, from the inside out.
Dr. Rushika Fernandopulle of Harvard University, is doing just that with Iora Health. I’ve been following him for a number of years. Here is what Iora Health says about itself:
We’re changing health care from the ground up.
We believe better health care starts with better primary care. Our simple yet radically different approach to restoring humanity to health care is three-fold: Team-based care that puts the patient first, a payment system based on care, not billing codes and technology built around people, not process. ……….
Our care team, which includes a dedicated advocate for each patient, works together to treat the whole person. We see people when they’re sick, but also when they’re well, so that we can keep them healthy. Here, the environment is caring and patients have a voice. It’s our job to give them everything they need to live happier and healthier lives.
Here is a fabulous and inspiring talk by Dr. Fernandopulle, who discusses how and why we need to change the healthcare system.
Here is a short version, but I really urge you to watch the longer one—its way more inspiring.
Happy (belated) New Year to everyone. I trust you are, like me, getting back into the flow of our normal lives after the end-of-the-year hiatus.
Last month I talked about “going upstream” and the need for upstreamists in order to have any effect on the course of healthcare in this country. Over the next few months I’d like to profile some of the upstreamists doing important work that I think will change healthcare for the better.
The first organization I’d like to profile is Health Leads. Since their founding in 1996, Health Leads “has evolved form a small student-driven campus organization to a fully staffed 10 million dollar organization with programs in 15 hospitals and clinics.”
Rebecca Onie, co-founder and now CEO, began the organization with the belief that a different kind of healthcare system is possible and that the healthcare system is in crisis. The goal was to do something about the fact that poverty has a negative impact on health outcomes.
From the Health Leads website:
“Health Leads Advocates …. Work side by side with patients to navigate the complexity of the resource landscape……… The Advocates follow up with patients regularly by phone, email, or during clinic visits.”
Watch this compelling talk by Rebecca Onie to get a feel for what this organization does.
As always, I would love to hear what you think!
Best of Health,
Sima Kahn, MD
Founder, Healthcare Advocacy Partners
I hope everyone had a great Thanksgiving, and will have a wonderful holiday season. In my last newsletter I mentioned going upstream, and here is the explanation:
There were four friends walking in the woods alongside a river, when they saw a baby floating by down the river. The friends ran to the river, jumped in, and rescued the baby. Feeling good about what they had done, the friends were shocked to see another baby floating by. Once again they jumped in to rescue the baby. But soon there were more babies floating by, and soon it seemed that the number was increasing. The friends formed a line, a “bucket brigade”, to quickly pass the infants from one to the other to rescue them as quickly as possible. And still they kept coming.
Finally, one of the friends got out of the river and started walking upstream. One of the others called out “where are you going?” The friend replied “I’m going upstream to see who is throwing babies into the river and stop them”.
I call this being an “upstreamist” and I was happy to see that term used in the article I have linked to below. Given the crisis of our healthcare system, we need to go upstream to the source of the problem(s) if we are going to really solve them.
Providing healthcare advocacy is one way to go upstream and avoid problems before they occur and need to be fixed.
Cultivate More Upstreamists to Transform Healthcare
“Be the change you wish to see in the world”
– attributed to Ghandi
I subscribe to a number of news feeds related to healthcare and our medical system, and the dysfunctional way we pay for and administer medical care in the US is in the news constantly. In fact, it’s in the general news daily especially now that the presidential campaign season is in full swing. So I, like I am sure many of you, am not surprised when I read about how it has gone awry. Nonetheless, reading a personal story about the death of someone’s loved one from this dysfunction is heart wrenching every single time.
When I saw this article “How American Health Care Killed My Father” by David Goldhill, it was so long that I anticipated skimming it. But I found it so gripping I read the entire piece in one sitting and it held my attention throughout. Not only does he describe what happened to his father, he discusses where the weaknesses in our system are, and then, in the section headed “A Way Forward” comes up with an excellent plan for changing the “medical industrial complex” to make it functional, economically sound, and to improve the quality of care.
I hope you will take time to read the entire article, and I would love to hear what you think once you have read it.
HOW AMERICAN HEALTHCARE KILLED MY FATHER
Following in the path of change of the “healthcare” system, I spent last weekend at a conference for physicians who are looking for nonclinical careers in medicine. These are not doctors who are just out of medical school or residency, but for the most part were people who had spent years practicing medicine. There were 4-500 doctors at this conference, and I served as a mentor—someone who is doing something different (serving as a healthcare advocate) and advising those who are interested in exploring my field.
How is this related to the previous article about changing the health care system? I spoke to 60 doctors, and if I had had more time I could have spoken to many more. Doctors are well aware of the problems in our healthcare system, and are aching to change it. Passionately so—I saw that this past weekend. And it is the reason I became a healthcare advocate after 25 years of practice—I felt compelled to go “upstream” (not sure what that means? Stay tuned for next month’s newsletter) and do something about the delivery of healthcare.
Most people, I have found, don’t know that they can access someone to help them through the complex and convoluted medical system, and even more concerning, don’t realize how much they need someone to do just that.
I want to share with you two articles that really spoke to me about the necessity of having an advocate when going through a difficult medical problem. This first one mentions someone who we all recognize, Tom Brokaw, and what he felt he needed when he was treated for multiple myeloma.
A CANCER PATIENT LEARNS THE BENEFIT -- AND NECESSITY -- OF HAVING A PATIENT ADVOCATE
Not only is Tom Brokaw’s daughter an emergency medicine physician, she has worked as a healthcare advocate as well. And with all that he is able to access, he still felt uncomfortable with the “lack of shared dialogue” in his treatment—what I would call lack of coordination of care or project management. This truly does give me pause. If he found this difficult, it is abundantly clear that we would certainly find it so.
The second article is about the ideal coordination of care—sort of a best-case scenario for how to navigate through a health crisis.
WHEN CONCIERGE CARE IS RESERVED FOR PETS
The journey of the author of this article and her cat, Humphrey, through the veterinary healthcare system made me envious of this marvelously integrated care. And it also provides a road map for what we could have if we had the will to make it happen.
I would love to hear back from all of you with your thoughts and questions about these articles, or topics you would like to hear about.
Dr. Sima Kahn muses on being a healthcare advocate, the troubles with our healthcare system, and how to advocate for ourselves.