“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.
Even if you don’t have a serious or life threatening illness, or don’t have access to a healthcare advocate any time of the day or night, there are tactics you and your family can use to advocate for yourself or your loved ones. Using these tactics will make your healthcare go more smoothly, with fewer missteps and hopefully fewer errors and delays of needed care. And these are things anyone can do! You just need to be prepared. Here are 3 of the most important tips for advocating for yourself:
1. Have your important health information with you.
For most people this means having printed out your contact information, who to call in an emergency, your medical conditions, medications, and allergies. I have developed a Health Portfolio™ that has all this information in a loose leaf binder that is easy to carry with you, as well as a one page easily portable form that can be taken anywhere (contact me if you are interested in this service).
2. Make a list of questions for your doctor before you go to an appointment, and at the appointment, write down the answers.
This enables you to review what was said later, when you can think more clearly. You can then check with reliable sources to clarify, like a healthcare advocate, good internet sources, or the staff of your doctor’s office.
3. Have someone come with you and take notes.
I can’t stress how important this is if you are going to an appointment to get results of tests, especially biopsy results when you are concerned about cancer. Once you hear the results, if they are not what you were hoping for, most people do not hear a word! Their brain goes into that altered dream state where they are aware that someone is talking but have no idea what is being said. They are too involved in the movie in their head where everything is going badly. And its hard to take notes yourself when you are in that state.
4. If you use the Internet, look at reliable sites.
For instance, use the Mayo Clinic site, Uptodate, WebMD.
These tactics should help to insure that you have accurate information both to give to your doctor, and most importantly, that you get from your doctor. Having questions written down ahead of time means your concerns will be addressed, and having a friend or family member as a scribe makes sure that you have the information that was given to review.
Last month I talked about advocating for ourselves, whether or not we have a professional advocate with us. These were tactics dealing with gathering the information we care about at our medical appointments, and also giving complete and accurate information. Here are some tips to use once you have gathered the information, have been given an explanation of what is wrong, and hopefully some options for treatment. These are for the next step: getting the care for your medical problem.
1. Always ask, “What else could this be”?
Be sure your doctor has considered other options. In medicine we call this the differential diagnosis. Why have other options been ruled out? Why has this option been ruled in? Make sure you understand the thinking.
2. Never undergo a treatment unless you understand what it is, why it’s needed, and what the alternatives are. This is the corollary to number one above, but is critical if you are going to have a treatment such as surgery, or even a minor procedure. If you don’t feel convinced you need that treatment, hold off until you do or decide on a different modality.
3. When you are in the hospital, make sure everyone who enters your room washes their hands.
I mean everyone! No exceptions! It is okay to ask, and to demand this. Almost every hospital in America has a plan for 100% compliance with this. Think of yourself as just helping them achieve their goal. And improving your safety at the same time. A win-win.
4. If you are feeling uncomfortable, uncared for, not listened to, and talking about it doesn’t resolve these feelings, change doctors.
Yes, really. It is okay to change. It happens to all of us. You are far more important than the concern you might hurt your doctor’s feelings.
5. Be assertive (see 1-4 above).
6. Trust your gut.
This one comes with a caveat—sometimes your instinct is not accurate, its really fear rearing its ugly head. But if you think something is not right, trust yourself. Don’t go along with it if it doesn’t feel right (see number 5 above).
I hope these tactics help you get the most responsive and best and safest healthcare for you and your family members. Let me know if you have questions or comments.
One of the most satisfying aspects of providing medical care for more than 25 years has been helping my patients figure out what is wrong, how to address what’s wrong, and how to navigate the medical maze to get what they need. The satisfaction I’ve derived from solving healthcare puzzles while guiding people through an often complex decision-making process motivated my transition from clinical practitioner to fulltime healthcare advocate.
You are probably wondering what helping patients and their families through the medical maze looks like. The following story of some clients (names and some details changed to protect confidentiality) will help to paint the picture.
A while ago I saw two patients, young to middle-aged women, each of whom had had a back injury at work. I was struck by how all encompassing their symptoms were. Both experienced nearly constant pain of various degrees, limiting their ability to do previous activities in work and in leisure. Both had been treated with a variety of modalities—including physical therapy, chiropractic, and pain meds—with little relief. Both had been told they had reached maximal improvement despite their obvious disability. Although months to years passed before either received authorization for an MRI, the diagnostic procedure indicated that each woman had a bulging disc.
Most of us have experienced back pain at one time or another. In fact, an estimated 75 to 85% of Americans will have low back pain at some time in their lives. In fact, I was once among the walking wounded myself, living with chronic back and neck pain until it worsened enough that I sought medical care. I started to see a wonderful physical therapist who helped me become almost entirely pain free. So I know it is possible to find relief.
So, for these women to be told that they should live with their pain and disability for the rest of their lives is unacceptable. I didn’t believe they had reached maximal improvement and encouraged them not to give up. I advised them to start off by reading Robin McKenzie’s Treat Your Own Back and Treat Your Own Neck and suggested an evaluation by a physical therapist knowledgeable about Aston-Patterning, a form of physical therapy that combines ergonomics, fitness training, massage, and movement education.
The process of healthcare advocacy involves taking a health problem and finding a way around or through the medical maze to arrive at the most positive outcome possible. My job is to provide information and tools that empower clients to confidently select and take the next steps.
If you or a family member are facing a healthcare issue and you don’t know what to do or where to turn, call a healthcare advocate!
Dealing with serious illness and hospitalization can be scary, demoralizing, confusing, painful, unpredictable.
Your father is not his disease. Your mother is not her “medication options.” It's easy to get overwhelmed when people you love are sick and all you want is to help them. You're sailing to a new world where some of the landmarks seem familiar and others disappear.
As a healthcare advocate, my job is to steer you to dry land and clarify your situation, to create a safe harbor where you can focus on yourself and your family. I get questions answered and stand up for you, stand in for you, stand beside you. You have a doctor at your side whose sole job it is to create and implement a plan so you can get the best possible care for who you are, with your specific health needs.
That's what I do: advocate for you when medical care takes over. With a healthcare advocate:
-You never need to undergo a treatment without understanding what it is, why it's needed, and what the alternatives are.
-You have someone to communicate with your care team when you are feeling uncomfortable, uncared for, or unheard.
-Your advocate can translate medical-ese into English, and statistics into solutions.
When the world of diagnoses and hospitals and prescriptions and procedures overwhelms your life, you need someone to make sure that when the doctor leaves the room, you know the next steps.
You need Healthcare Advocacy Partners.
Dr. Sima Kahn muses on being a healthcare advocate, the troubles with our healthcare system, and how to advocate for ourselves.