Category: Having a Voice in Healthcare

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Having a Voice in Healthcare, living with chronic illness, overcoming adversity

I Wish My Vet Saw People

Posted on by Rev. Greg Katz, MS, PhD

If you follow me on Twitter (@GregKatz2), Facebook, or on these posts you know I have a black lab named Tashi that was diagnosed with MRSA (Methicillin-resistant Staphylococcus aureus) about seven years ago. Half her life has been spent visiting doctors, taking a host of medications, and having numerous tests where she’s been poked and prodded to get cultures. Throughout this process she has endured pain and discomfort, never giving up her loving nature.

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After fighting her most recent infection for the better part of a year, I’ve had the chance to be grateful for her doctor (Dr. B). He’s dedicated to her well-being. He took her case and as a result changed the infection control policies at the Veterinary Hospital. Most of all, I’ve watched him spend time with Tashi, never giving up on her and always trying to make her as comfortable as possible. What could he teach medical students who will eventually be treating us in doctor’s offices and hospitals?

Meet the patient where they are. I’m fortunate because I feel as if I’ve become partners with my medical providers. I always ask questions and I’m aware of the latest research on my own conditions. There is no power play in the exam room. Our vet is very sensitive to the power dynamic and when he examines Tashi he sits on the floor so he can see her eye-to-eye. He will often bow his head so that she knows that he doesn’t have to be dominant, in theory. He’s also the keeper of the treats, always a way to endear himself to her.

Follow-up is very important to the health and healing process. I feel like I’ve attracted patient positive doctors. They’ve been concerned and their follow-up has been extraordinary. One of my doctors had ordered some lab work and I didn’t do it within a timely manner. I received a phone call from him saying he hadn’t seen the results come across his desk and wanted to make sure I had gone for the lab tests. I felt like he was definitely looking out for me. Dr. B goes above and beyond the call of duty. After Tashi has an office visit, the phone rings about 8pm a couple of days later (after the vet office closes), the doctor checking to see if she’s making progress. Wouldn’t you like a follow-up call from your doctor to see if you’re making progress?

Dr. B always dialogues about side-effects and outcome strategies. He’s clear about what I’m willing and unwilling to do for treatment. Some of the medications Tashi has been on have had such horrible side-effects that they have been removed from the repertoire of possible treatment strategies. Minimizing suffering while seeking treatments that work is paramount to us working as a team. Dr. B doesn’t make it a “my way or the highway” session.

What can you take away from my experience with a vet that treats Tashi as if she were a person? Never allow your doctor to talk down to you. Be clear that you may not have gone to medical school, but it’s your body, your health, and your journey. Let the doctor know what’s important to you regarding the relationship. I always share with the doctor my professional background in healthcare so he knows from the start I’m going to be very involved (sometimes too involved when I begin to self-diagnosis. Read my post on anchor bias).

Select a doctor that makes you feel like you’re a priority. Unfortunately I spent five months taking Tashi to the vet a minimum of three times a week for treatment so I had a lot of time to ask questions and discuss her progress. Stay in contact with your doctor so he has up-to-date knowledge of how you’re doing. Many healthcare systems have email for their staff; use it! Don’t be afraid to ask questions in between appointments.

Lastly, find a doctor who has a strong commitment to compassion. Dr. B has always treated Tashi as if she were his own. He has done amazing amounts of research on her condition and is always looking for the latest and greatest treatments for her condition. I wish he saw humans because I’d be his first patient!

Looking to explore how to select a physician that is willing to partner with you?  Looking for education, support, and inspiration when facing a health challenge?  Visit http://www.survivingstrong.com

Want to explore how art improves healing?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

Posted in after the diagnosis, art and healing, Autobiography, coping with chronic illness, coping with life threatening illness, creativity and health, Having a Voice in Healthcare, Storytelling

Who Will Fill the Gap?

Posted on by Rev. Greg Katz, MS, PhD

I received a very sad email this morning.  Visual Aid, a San Francisco nonprofit, is closing its doors at the end of the month.  Visual Aid’s mission is to provide resources to artists with life-threatening illness to continue creating works of art.  They provide financial assistance, an art supply bank, entrepreneurial workshops, and exhibition opportunities in their gallery.

I found out about Visual Aid almost 3 years ago when I began doing research for my dissertation, “Artists and Illness: Narrative and Its Impact on Autobiography and Meaning Making”.  The Executive Director, Julie Blankenship, a true arts community leader, assisted me in finding and scheduling artists to interview for my research.  This is the love and care that Julie has offered the Visual Aid community for the past eleven years.

This organization has served as a place for artists with life-threatening illness to make connections aiding in eliminating the isolation often felt by both artists and those with an illness.  They have served to gain exposure for artists who may not have the resources to buy art supplies or promote their work because they have limited connections in the art community.

Why has this organization been so important?  They have given voice to a community that holds a story we don’t often hear.  Visual Aid artists tell their pathography (stories of their life and illness journey) that we usually only read about in books.  I came to see clearly that artists wouldn’t write their pathography, but they certainly create works of art sharing that journey.  I was and still am deeply moved by the artists’ works of art, their story, and their generosity to share these personal moments in their lives.

So who will fill the gap?  Illness isn’t going away!  Artists with illness aren’t disappearing from the planet, although eradicating illness would be phenomenal.  Who will be the guardian angel for these artists with life-threatening illnesses?  These stories need to continue because they are a part of our social fabric.  The provide insight into the disease and healing process.  They share experiences of the social aspects of illness that can only be told through art.

Without an organization like Visual Aid we may potentially lose part of our cultural story.  Even though the stories of individual’s illnesses will continue, without the artists’ stories, it will be incomplete.

As we say goodbye to Visual Aid, I hope you’ll consider ways to continue promoting the stories of artists’ with illness.  We need to have the complete story of healing and/or coping with illness, not just the written word!!!

Posted in Having a Voice in Healthcare, Living with Illness

Medicine and the Human Factor

Posted on by Rev. Greg Katz, MS, PhD

I was watching the news yesterday when a report about a Southwest Airlines pilot hit the airwaves.  Evidently, the pilot didn’t know that his mic was stuck in the on position and he went on a tirade about the fact that the flight attendants were either gay, old, or fat, leaving him with limited choices for sexual exploits.  It obviously took those on the radio frequency by surprise, but more importantly it raised some eyebrows amongst the Southwest Airlines crews.  So what does this have to do with being diagnosed with a chronic or life-threatening illness?

It’s been discussed and written about in multiple books about how physicians refer to patients as “the kidney in room 202”, or “the brain tumor in 202”, reducing you, the patient, to the most minimal of descriptions.  Why is this important?  Because the goal is to have the medical team look at you as the total package, not simply your disease.  There is more to you than simply your diagnosis; the diagnosis is a part of you, it doesn’t define you.  When or if we hear providers speak this way it reduces our faith in them as people.  This is why so many medical schools are starting to incorporate Medical Humanities into their curriculums.  The idea that if you bring some humanity into the medical arena the relationships between physician and patient get better, diagnostics are more accurate because future physicians are being trained to listen to the patient’s story; their illness narrative.

If you haven’t read Jerome Groopman’s, “How Doctor’s Think”, please finish this post and rush to the bookstore for a copy of this book.  If you’ve been diagnosed with a chronic or life-threatening illness this book should be surgically attached to your body so you have it handy at all times.  The introduction shows the importance of the illness narrative because it helped diagnose a young woman who had been battling her illness for over 15 years.

Words are powerful so using them to improve the doctor-patient relationship instead of hinder it is crucial on your journey to health and healing.  As your illness narrative unfurls it provides vital information for your care and treatment.  The doctor should be more of a detective then mechanic.

What would you like your medical provider to know about you?  How do you think your story could help in your care and treatment?  What have you been leaving out of your story when you visit the doctor, that could be the linchpin that makes you better or well?

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, End-Of-Life Care, Having a Voice in Healthcare, living with chronic illness, Living with Illness

Crucial Conversations and Our Greatest Taboo

Posted on by Rev. Greg Katz, MS, PhD

We’re a verbal culture and we like to talk.  People make their entire living simply by talking and yet when it comes to some crucial conversations we stay so far away that we think we’ll live forever. 

Patterson, et.al. wrote a book called “Crucial Conversations” for the business world.  It spoke to the corporate world about how to have important and often awkward or uncomfortable conversations with employees about performance and other issues.  It’s amazing that the medical community hasn’t come up with its own version of this book because most doctors, even oncologists (who deal with more death than most other specialties other than possibly emergency/trauma medicine) won’t or don’t talk to patients about end-of-life care.

There was an article on Comcast this week citing new recommendations for the cancer community from the American Society of Clinical Oncology (ASCO).  The ASCO recommendations are for doctors to have those crucial conversations before the person is rolled into an emergency room or they are on life support.  Too often we’re finding that patients aren’t even aware that comfort care/hospice is available and suffer needlessly as does their caregivers. 

I think the article puts it beautifully about the capacity of you, the patient, they say, “Everybody wants a good death but not a moment too soon, but they don’t have the language to ask for it.”  I understand that there are too apologies that doctors have to make that is not comfortable.  The first is at the time of diagnosis when they say, “I’m sorry to tell you, but…” and the other is “I’m sorry to say that the treatments aren’t working and there are no clinical trials available, so it’s time to talk about end-of-life care.” 

The statistics given by ASCO says that “40 percent of advanced cancer patients have what it calls a ‘realistic conversation’ with their doctors about what to expect and their choices of care”.  The frightening part of that statistic is what follows next, “The consequences: Patients increasingly are receiving aggressive chemotherapy in the last two weeks of life.” 

The ramifications of that last sentence are that at the end-of-life instead of being comfortable, they are dealing with side effects from chemotherapy and not able to live life unencumbered from machines and hospitals.  No one wants to die but it is inevitable.  Why wouldn’t you want to be comfortable, in the surroundings you desire, and with people who love you the most. 

This is the hardest part, you, the patient, may have to be the one to bring up end-of-life issues with your doctor (no matter your diagnosis).  You may have to be the one who has the strength and the courage to approach your doctor and have this “crucial conversation”.  You may have to be the one who assures the doctor that it’s appropriate and okay to discuss end-of-life care.  You get to be the physician’s coach on end-of-life issues pertaining to you…after all who better to do this job.

I know it’s scary, but if you need some support or have questions about end-of-life care or how to speak with you medical provider you can e-mail me at greg@survivingstrong.com.  Don’t leave your end-of-life care in the hands of another person.  Empower yourself to make these decisions!

Posted in Having a Voice in Healthcare

When Medical Studies Are Corrupted

Posted on by Rev. Greg Katz, MS, PhD

Did you hear the big news yesterday?  The study that says that the measles vaccine in children causes autism turns out to be a fraud.  The British Medical Journal claims that study was an elaborate fraud.  It seems that Dr. Wakefield, the doctor that did the study was paid $700,000 for the outcome of the study.  What has this done with parents in the United States?  It caused parents to questions and in turn refuse vaccinations for their children.  There has been a drastic decline in the number of children being vaccinated…hopefully this will change.

Why is this an important topic?  Because many of you who have been diagnosed with a chronic or other life-altering illness depend on these studies, as do your doctors, to develop treatment plans.  This could mean the difference between getting better or getting worse.  It’s amazing that parents made their decisions based on one study.  I find that to be a bit unusual, but panic sets in and since autism is truly scary for parents I can understand them climbing on board to save their children.  So what does this mean for you?

It means that if you’re looking for particular new treatment options talk with your medical provider.  If you’re looking at specific studies ask to see the studies.  If there is only one study done ask the medical provider why they are willing to begin this treatment protocol without other studies to substantiate the findings.  There are cases where a study is ended early because the outcomes are so startling and the benefits of the drug are quite pronounced.  It’s okay to ask your medical provider questions about the studies they follow and in turn then use for treatment plans.

As patients, we have a responsibility to ourselves, our lives, and our families to be as thorough as possible when investigating treatment options.  The study about vaccinations and autism was done in 1998; that’s 12 years of trauma inflicted on parents who are struggling to decide about vaccinating their children.  In addition, parents who did vaccinate their children and their child is autistic have been suffering with their decision to vaccinate.  According to news reports, there are no studies that correlate vaccinations and autism, other than the one that was just deemed a fraud.

Be careful.  Be thorough.  Be curious.  Be a participant in your healthcare!

Posted in Having a Voice in Healthcare, Partnerships

Doctors Providing Hope

Posted on by Rev. Greg Katz, MS, PhD

Every so often I come across a story the renews my faith in human nature.  It brings me peace-of-mind to know that there are still medical professionals out there willing to help someone without trying to make a buck.  ABC World News with Diane Sawyer featured Dr. Andy Moore and the medical professionals at “Surgery on Sunday” as their person(s) of the week.

“Surgery on Sunday” is in Lexington, KY where the team of medical professionals offers their surgical services once a month for those who need surgery but are uninsured.  The staff providing the services couldn’t be more humble about this magnanimous service they provide to the Lexington community.  One doctor interviewed said that the “thank you” he receives from a patient he performed surgery on is uplifting and fills his soul to the brim.

The medical professionals at “Surgery on Sunday” feel honored to provide this service to the community.  It’s actions like this that prove that a community based approach to healthcare is not only possible, but works well.  It provides a safety-net for those who are not eligible for state or federal programs like Medicare of Medicaid, thus relieving the stress to those individual in need of surgery.

A program like “Surgery on Sunday” is replicable.  It isn’t rocket science; it takes medical professionals volunteering once a month and a surgical location to make it possible.  We all have to remember that there are many ways of being paid, and one is gratitude.  A program like this not only helps those who need surgery, but extends hope to potentially millions across the country who may someday benefit from the model created by these heart-driven medical professionals.

I hope that you will send all those affiliated with “Surgery on Sunday” your best wishes and congratulations on their triumphant success.  I hope you’ll refer your medical professionals (if you have one) to the website, www.surgeryonsunday.org to show your medical team what can be accomplished to serve your own community.  Last but not least, please hold hope in your heart for what’s possible when inventive, caring people put their body, minds, and spirit to work to create something that fills a huge gap in our current healthcare system.

Posted in Having a Voice in Healthcare

Is There a Cut-Off Point?

Posted on by Rev. Greg Katz, MS, PhD

Healthcare is being debated in Congress and one of the issues on the table is the rationing of healthcare.   People are concerned that treatment they need won’t be available to them because there are parameters that prohibit you from receiving a particular treatment, medication, or even surgery.  NPR had a journalist on discussing this matter and some of the callers brought up some very interesting issues.

One caller L. stated that his father at 87 years old needed a valve replacement.  The family sat with him and discussed the pros and cons of the surgery.  After careful consideration they decided not to proceed with the surgery.  The outcome?  He lived for another two years and didn’t have to spend six months recuperating from a drastic surgery. 

60 Minutes had Ira Byock on discussing these parameters and it brought some interesting issues to light.  One patient age 63 was having lung and kidney failure.  He was going to need a double transplant, but in order to be considered the patient needed to start exercising and eating.  Dr. Byock discussed the possible need for CPR and the patient decided that yes, he wanted to be resuscitated in case his heart stopped.  Is there any quality of life at this point?  I believe that’s the question that is on everyone’s mind; how can you decide what’s enough and when do you stop any treatment allowing the patient to die.

I wrote an entry about informed medical decision-making.  It’s important that each of us has as much information as possible when making these life and death decisions.  Is it fair that the medical community puts conditions on care?  In order for a recovering alcoholic to receive a liver transplant they need to have at least one year of sobriety, that’s a parameter that doesn’t seem to be argued.

During these debates I hope you’re considering your own quality of life and what limits you would put on your own treatment strategies.  These are the times when digging deep can save you a lot of pain and anguish and save your family from making decisions they may not want or be able to make on your behalf.  The other side of the coin is deciding when it’s time to fight for treatment you believe will extend not only the length of your life, but the quality to live that life to the fullest.

Take some time to really consider your wishes as it pertains to end-of-life care.  Think about what you and your family are willing to endure.  The 60 minutes interview talked about how many people live out their last weeks of life in the intensive care unit.  Is that something you would want for yourself or would you prefer to have other plans in place.  Talk to your providers about all the options.  Have a living will or a durable power of attorney for healthcare in place outlining in detail your wishes.

Let your voice be heard during this debate.  Your elected officials are making decisions that may impact not only the type of care you receive but the amount of care you receive.  Should it really be up to them?

Posted in Having a Voice in Healthcare

Decisions Decisions

Posted on by Rev. Greg Katz, MS, PhD

When diagnosed with a chronic or life-threatening illness not only do you have the shock of the diagnosis, but now you’re required to make all these decisions about your care.  Our age of technology sends most of us running to the internet for information and options and in many cases it helps and in others it increases the confusion.  Do you think it’s possible to discuss with your doctor all the options to come up with a feasible treatment plan?  What if the doctor talked to you and not at you, would that make a difference?  Wouldn’t you rather be a partner in your care than have a plan super-imposed on you like clothing bought off-the-rack?

The only way you, the patient, should be making decisions about your own care is if you’re thoroughly informed.  Making off-the-cuff decisions isn’t good for you and will leave you angry at the medical community.  The internet may provide a foundation of information, but it can’t go through a decision-making process for you so there has to be a better plan.  Becoming an informed patient means having a dialogue with your doctor and coming to an understanding about the pros and cons of each treatment option and how the two of you can tackle this health challenge.

There is a group called “The Foundation for Informed Medical Decision Making” (http://www.informedmedicaldecisions.org) that focuses on how patients make decisions and is looking at outcome studies when patients are fully informed about their options.  I’ve spoken in the past about the fact that if you go to a surgeon they are going to want to do surgery, as an example.  Each provider has some stake in the treatment plan because it’s their specialty, it’s what they know, and it’s how they know to solve the problem.

Business week had an article discussing ways to reduce healthcare costs and they shared a scenario from the Spine Center at Dartmouth-Hitchcock Medical Center.  They said, “patients with back problems are show a video that walks them through various procedures and provides data showing that outcomes are similar whether or not they have surgery.  Once the program started, spinal surgery rates dropped 30%.”  A 30% reduction in spinal surgeries, so how does the domino effect apply?  Thirty-percent fewer spinal surgeries means 30% fewer chances for surgical errors that result in medical malpractice suits.  Thirty-percent fewer spinal surgeries means less chance for the patient to acquire a hospital based infection like MRSA or Cdiff.  These are big things to consider.

It doesn’t matter what your diagnosis, informed decision-making is crucial to your well-being.  It will empower you and that in and of itself increase your confidence in the treatment and the provider.  When you feel empowered it increases your level of hope and that’s important for your recovery.  Informed decision-making means that your voice is heard and your place in this world as an individual, not a number is honored!

Posted in Having a Voice in Healthcare

Breakout!

Posted on by Rev. Greg Katz, MS, PhD

When you hear the word “breakout” it may conjure up scaling prison walls in search of freedom.  I find as I talk to more and more people diagnosed with a chronic or life-threatening illness that the “breakout” is not about escaping, but figuring out how to deal with being backed into a corner.

Let’s face it, once the diagnosis is given the medical community feels that the steamroller is the most useful tool in getting you to accept their diagnosis and treatment plan.  The big question is that to empower ourselves as patients it’s crucial that we ask questions and begin what could be one of the most important conversations of your life.

The medical community isn’t different from any other profession, the only difference is that with doctors the decisions could be a matter of life and death.  Whether it’s about a diagnosis or treatment, doctors have to deal with something called, “cognitive literature diagnostic momentum”.  They attach themselves to a diagnosis (or treatment) and over time it gets stickier and stickier.  Like a dog with a bone it may be difficult or near impossible to move the provider from their stance on your care.

Surprise!  The truth is that it’s your decision.  What we often forget is that the treatment regimen is up to us.  We have to remember that for some, no treatment is a treatment option.  I know that sounds crazy, but we’re talking about free will, not having something shoved down your throat.  Yes Virginia, no treatment is an option.  It’s not about going rogue, it’s about knowing in your soul what you’re capable of handling or willing to handle.  I repeatedly comment about my own father wishing that when the day comes (many years in the future) that he dies that he goes with one big heart attack in his sleep because he’s already made his wishes known that treatment will never happen.  I know it may be a shock, but that’s his decision.

Keep yourself out of the corner and keep your physical, emotional, and spiritual options out in the open.  It’s important to stay in the question always wondering what options still exist and what options might you be willing to try?  It’s also important that communication between you and your doctor be open and honest so you don’t ever feel backed into a corner.