On Losing One’s Bladder

StomaCloak

What happens when the physician becomes the patient? What happens when the physician is a urologist and the disease he has, is something he’s treated before?

Joseph Salisz can explain what happens because he’s been there. He describes his profession, “I fix plumbing problems.” And the “ironic twist,” as he puts it, is that he had a “plumbing problem.”

On Being a Physician

cropped dr salisz/h1>One Sunday evening in 2010 he got a phone call that transformed him from a confident surgeon to a patient. “My family doctor called me and said I have a blood test problem…” His doctor told him that his PSA was 28. Prostate Specific Antigen (PSA) is a test for prostate cancer. In 2009, Joe’s PSA was 1.6. His reaction was, “I don’t believe it, let’s repeat it.”

“Surgeons are a special breed of physician….” Joe explains. “You…pay me to take things out, things that you are accustomed to…you…pay me to sew you back up….” Because of this trusting relationship, “I have to be in charge,” Joe continues, “…my confidence sometimes comes off as arrogance but who wants an unconfident surgeon?” He shares a surgeon’s adage, “A surgeon should be confident, have steady hands and have clean fingernails.”

His demand to repeat the PSA test was the last time he was in charge of his “plumbing problem.” The repeated PSA was 29. A biopsy confirmed prostate cancer that had invaded his bladder.

On Becoming a Patient

Joe found himself in a hospital linked to an IV pole, catheterized and prepped for surgery to remove his prostate and bladder. “This is a weird position,” he relates, “I’ve never not been in control. I’ve been doing urology for 22 years and prostate cancer was an illness I was accustomed to treating.”

Joe’s physician-to-patient metamorphosis included the removal of an essential body part—the bladder. The bladder is the receptacle for urine in your body. “You need your bladder to get urine outside of your body,” Joe explains. So what replaces your bladder when you no longer have it?–A stoma and a bag.

Joe had what is called a urostomy. The colon and the ileum (or small intestines) are two other organs in the body that when diseased may have to be partially removed and intestinal waste products rerouted: these are called colostomy and ileostomy respectively. In many of these operations, an opening is made in the abdomen for the waste products of the body, (urine for urostomy and stool for colostomy and ileostomy) to leave the body. The opening is called a stoma and the person’s waste products come out of the stoma and go into a plastic bag that attaches directly to the skin around the stoma.
On Being An Ostomate

Needless to say, it is transformative, and not in a good way. “What a body change! All of a sudden I go from a nice svelte surgeon with great abs to somebody with a hole through my abs and something red sticking out…and that’s not normal.” Research on the quality of life for ostomates (people with ostomies) finds that ostomates are likely to have a poor body image. In addition, they don’t feel confident, they avoid intimacy; they worry about leaks and odors, and basically drop out of the mainstream.

There are 100,000 new ostomy patients in the United States per year ranging in age from newborns to elders.

Joseph came home with a plastic bag attached to his abdomen and soon experienced this. “How can I be a physician? How will I be me?” Just one example of the impact of the body change on Joe was that he didn’t feel comfortable changing in the gym. He hated the sensation of a bag bouncing around on his abdomen so he stopped running. He lost confidence in himself.

Joe describes the bags this way. “These bags are sweaty…they feel wet, you don’t know if you are leaking…they’re scrunchy…they make a crazy sound when people hug you…and I needed a lot of hugs at the time…they’re odorous…and they are unsightly, they make a bulge in your clothes….”

Joe readily describes the support that he receives on a continuous basis from his family and his community. His wife started looking online for products that would cover the bag and make it easier for him to get back to his “old self.” Unfortunately the covers she found just didn’t do the job.

On Healing a Healer

Luckily Joe lives in western Michigan, a manufacturing center of the country. He brought his problem to a friend in the textile business whose specialty is material that is carbon impregnated. When the carbon is activated in the cloth, it adsorbs odors. It also wicks away the sweat and moisture that is trapped around the bag, reducing the risk of skin breakdown from bacterial or yeast infections.

So with a group of friends, Joe transformed from patient to an e-patient (engaged, enabled, empowered) inventor—the result is StomaCloak.

beige and black StomaCloak new photo 2014StomaCloak is an incredible product that is changing lives. Here are some comments Joe has received.

“I really like my new StomaCloak. It is especially nice after swimming or bathing. It somehow wicks away the moisture as well as protecting my skin. It fits over the whole pouch and is very comfortable. It also gives me a secure feeling in case I might have a leak, so I even wear it to bed.”

“So I purchased one last week…I do not have a pronounced smell problem, but this Cloak seems to regulate the temperature and I do no longer get that cold wet feeling, thinking I have a leak, but a constant warmth. I am ordering two more of the StomaCloaks today…”

“Right now StomaCloak is doing everything that it is suppose to be doing. I’m an Ileostomy and have tried every filter that the ostomy manufactures have offered and can say that I get two days wear time before my clothes start getting soiled. With this now I get 7 days wear time out of my pouch. So far this is working out great.”

Perhaps Joe’s favorite is a letter he recently received from a mother of a 16-year-old teenager. He had a colostomy for Inflammatory Bowel Disease and was feeling awkward about his stoma. His mother bought him a StomaCloak and with the StomaCloak, she wrote, “he’s been confident enough to ask a girl to the prom!”

Now that’s what StomaCloak is all about.

The content of this post is based on email correspondence and on a TEDX presentation at https://www.youtube.com/watch?v=jetnnOwcSrI with permission from the presenter.

Kathleen writes at Medivizor’s blog, Health Communication and Health Advocacy, The #HCHLITSS Tweetchat and for Legacy DNA Marketing Group.
First posted on LinkedIn

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Reach For Your Best!

As a 4th grader in Jackson Mississippi, Ivor stood outside a hospital room and listened to her father scream, “Let me go…let me go…” as three men held him down for a spinal tap.  In that moment, she made her decision to become a physician, “I didn’t want to feel that disempowered again,” she states.  Her decision to work as a health communication researcher evolved from this experience as well, “I didn’t want other kids, I didn’t want any patients … I didn’t want any other families to feel that way either.”

Dr. Ivor Horn’s journey from Jackson to Washington, DC and to an Associate Professorship in Pediatrics at Children’s National Medical Center and George Washington University School speaker-ivor-horn-lgof Medicine included hardship and courage.  Only in medical school did she discover that her family had been homeless at one time, “the fact that no one told me I was poor or homeless …gave me the freedom to not put boundaries on what I could do,” she writes.

This is why Dr. Horn maintains a clinic in one of the poorest areas of Washington, DC:  Ward 8.  Some facts highlight the need in this area of DC: the obesity rate in Ward 8 is 42%, even higher than Jackson Mississippi and the average family income is $10,000 per year.   “The families I see experience challenging home lives a lot like that which I experienced growing up; I can look a kid in the eye and say with conviction that I know exactly what he is going through….” At her community health center, no one is turned away because they can’t pay.

As a physician, Dr. Horn is tested by her clinic’s schedule, “Our schedule allows 10-15 minutes per patient with a little extra time for complex patients…. those with multiple medical conditions that need multiple services.”  So she empowers her patients with her four rules:  “1) Sit down. 2) Listen, 3) Let them know we are in this together.”  And her final, the “doorknob rule- “You can stop me anytime during the visit, even if my hand is on the doorknob.”

Pediatricians need strong partnerships with parents.  What she has learned in her practice and her health communication research is that, “patients are more likely to follow a health plan they helped develop than one dictated to them.”  Her experience tells her that, “Managing a chronic condition like asthma is about what you do every day, not just during a crisis. Give patients and caregivers tools that make management part of their routine. That means asking about THEIR routine,” she says.

Now she is sharing this knowledge with health care innovation designers in what she calls ‘Inclusion by design.’  She defines ‘inclusion by design’ as “A conscious effort to include the minorities who need disruption of health care, IN the innovation, development, and design process.”

To Dr. Horn, it’s really a no-brainer. As she points out,   “Minority communities are actually early adopters of technology. They own more cell phones and are greater users of social media.”

Yet she is frustrated that, even though there is a wide variety of health IT out there, much of it is not reaching minorities or the underserved.  In a presentation at the Healthcare Experience Design, 2013 conference, Dr. Horn gave a step-by-step description of just how to reach more of the underserved with innovations.  For example, she pointed out that personal connections are key and active listening is necessary.  Developers need to communicate and collaborate with minority communities on innovation solutions.  “Trust and listening matter in health…and they matter in the design process,” she says. “Companies need to look to minority developers and Health Care Providers who are in the community already,” Dr. Horn states.

Dr. Horn recommends that designers start small or locally and then scale up.  When HIT designers bring up the barrier of cost or money, she makes the important point that bringing innovations that help those who need it most will, in the long run, reduce health care costs for everyone.

Dr. Horn practices what she preaches,  “When my patients see me in their neighborhood, it matters,” she says.  When she recommends apps for teenage patients with asthma “Their eyes light up and they feel empowered.  I’m on their turf.”

Knowing where her patients are coming from makes a huge difference. “I know what it’s like to have your phone or your electricity turned off.” And being a role model is important. “I know how important it is for my patients to see someone who looks like them and who tells them, I’ve been where you are and there is no excuse for you to not reach for the best.”

And that’s just what Ivor Horn has done since that fateful day in Jackson, Mississippi.

Content from:

#HCHLITSS Tweet chat transcript

Presentation at HealthCare Experience Design 201 Conference 

Dr. Ivor Is In:  MyBrownBaby Blog

 

 

 

Physicians Need Social Media

When patients hear the term “The Empowered Doctor” they may ask “I thought physicians were empowered. Staff, systems ,procedures are controlled by them. What am I missing ?”**

31deeb1 “Doctors in their prime are going out of business,” says Dr. Simon Sikorski, President of Empowered Doctor Inc.   Dr. Sikorski believes that physicians need to realize they are are in business and that they need to monitor their patients’ satisfaction. “Patient satisfaction or “client satisfaction” is critical to success,” he believes.

Dr. Sikorski describes an empowered doctor as someone who is a “trusted filter of information.”  There are a number of places where patients are finding information, “Right now docs are competing for patient education with pharma, bloggers, health information companies, ratings sites etc.”   He advocates that doctors become active participants in social media and even prescribe apps.

Physician involvement in social media must be augmented.  Doctors need to spend time and money “investing in how they’re found. It’s no longer sufficient for doctors to have a website. So the doctors who don’t even have one, or a simple blog optimized for their name, are at a tremendous disadvantage,” he believes.

One of the main reasons for Dr. Sikorski worries about physician involvement in social media is because of questionable methods that are being used to collect and publish patient reviews.

“Patient reviews are a trap. To date patient ratings sites are largely in the business of blackmailing doctors, and not creating an actual service,” Sikorski argues.  In fact, he describes a practice of calling on physicians to  “purchase advertisements or remove bad reviews.”   The two sites that Dr. Sikorski believes are providing fair and accurate ratings are Google Plus and Facebook, one reason being that the reviewers are not anonymous.

Dr. Sikorski describes the patient’s process of finding a physician this way, “Take a patient who is looking for an orthopedic hand surgeon. He/she will look up on Google ‘orthopedic hand surgeon’ in their location, select several doctors, go to their websites … then go back on Google and try to find something negative about those doctors….unless 20-30% of patients actually write reviews about doctors (so at least ONE THOUSAND reviews per calendar year) everything on the ratings sites is misinformation.”

Dr. Sikorski asks patients who are using the Internet (e-patients) to be “patient” with their physicians.  Many e-patients complain that physicians will not address the information they have gleaned from the Internet. “Too many times I see patients come to a doctor’s office already frustrated with the message ‘It’s my way or the highway’ … to which the doctors respond ‘It’s my way.’” Sikorski is trying to change this response. “Some of my personal friends ask their patients to share the blogs they read, contribute content to their websites, and some of them even end up hiring bloggers on a part-time basis. Why? Because an Empowered Doctor is so rare to find, and when people talk about them on social media, that practice becomes celebrated on many different levels.”

Sikorski’s advice for physicians, get involved in social media.  Physicians “need to be on social media. They need to invest in patient satisfaction and their business. They need to develop a process where patients’ feedback and needs are just as important as medical knowledge. Doctors who do that can create very successful practices. Doctors who don’t… are retiring.“

Based on March 28, 2013 Health Communication, Health Literacy and Social Sciences Twitter chat #HCHLITSS.

**comment by Annette McKinnon @anetto

A new initiative on the Empowered Doctor is Empowered Patient where bloggers are celebrated for their contributions to healthcare, patient education, correcting of misinformation on the internet, helping people make better choices, and more. To learn more go to http://www.empowereddoctor.com/empoweredpatient/

Another write-up on the chat at http://enbloommedia.com/2013/04/04/helping-physicians-make-their-way-up-the-social-media-learning-curve

What ever happened to old school medicine? It’s still around…

“Nothing connects doctor & patient faster than a simple moment of pure listening. Not just waiting for your turn to talk, but real listening.”

Tweet by Dr. Steven Eisenberg, January 5, 2013

I wrote a post a year ago entitled “What happened to Old School Medicine?”  Perhaps, by putting my mourning  for my father “out there” I have started something in my own life.  My most recent experiences with physicians, specifically with  my child’s pediatrician, has been like walking into the past.  I have found “old school medicine” in Wellesley, Massachusetts.  I don’t live in Wellesley but I took the advice of my child’s school nurse and made an appointment with her children’s pediatrician.

This is an ‘old school’ practice:  two physicians share it.  We have only seen these doctors twice but they both spent a large amount of time talking and listening to us.  When I have had a question, I called the office and later that day, the doctor called me back.  That hasn’t happened in a long time.


clouds2

And then, there are tweets like the one above.  Faith is a beautiful thing!

Patient-Centered Medicine Part 2

The etymology of the word “Patient” is described on  Webster’s site  as:

derived from the Latin word patiens, the present participle of the deponent verb pati, meaning “one who endures” or “one who suffers”. Patient is also the adjective form of patience. Both senses of the word share a common origin.

On Graduation Day, medical students become MDs and repeat this Modern Hippocratic Oath.  Here are a few of the lines about patients.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick….

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

It is important to know what physicians think about the Modern Hippocratic Oath. In 2001, Nova did a program on the Hippocratic Oath and invited physicians to add to a doctor’s diary.  I found the following comments fascinating and illuminating and wish to provide them here today.

I have done my best working as an overworked, underpayed academic physician in high-risk obstetrics in a metropolitan city teaching university since then [saying the Hippocratic Oath at graduation from medical school]. I look back to the wisdom and guidance of Hippocrates everyday as I struggle to balance my duties, patient rights and allocation of hospital/societal resources for the sake of underprivileged and acutely ill mothers and their unborn children.

It is particularly evident in this modern era when more students are choosing residencies in radiology, anesthesiology, and pathology for the sake of their lifestyle. Our outstanding residency program in OB/Gyn has difficulty in filling our slots because of significant workload and lifestyle issues. These Hippocratic Oath dissenters tend to openly complain about excessive clinical workload despite obvious patient needs. Many of these individuals rationalize a “shift-mentality” as their future practice of medicine that justifies going home when they are “off-duty” despite any other professional obligations. It appears that “job quality” is a priority when compared to “professional duty” in the medical practice of these particular future physicians.

Some of this new breed of colleagues also have a public display of disrespect for the indigent, confused, and simplistic patient. Instead of becoming an advocate and/or protector of society’s weakest element, they would discard this needy population in preference for the medical procedure, economizing their clinical practice or optimizing their time at home with family and friends.

The most disconcerting attitude within this subset of these “New Age” practitioners is the blatant contempt and disrespect for their elder colleagues in our medical profession. Stated reasons are outdated practitioners and oblivious perspectives to the “modern face” of medicine. While I am still at an intermediate stage in my professional career, I continue to learn more about the practice and ethics of my specific profession from my soon-retiring colleagues than from any journal, Web site, or national meeting.

Generation X has recently matriculated into the field of clinical medicine, and our national healthcare system will only suffer further when we tolerate physicians who do not care, apply inappropriate medical techniques, and have little professional respect for the patient-physician relationship as outlined in this product of early medical philosophy.

P.S. I continue to identify a small group of non-generation-X students and residents each year who defy this societal transformation and who strive to follow in the footsteps of myself and my elders. My solution for this “Gen X syndrome in medicine” is a realistic Third World medical experience for junior trainees (which I have done on several occasions) to give them a perspective that healthcare is a right for all human beings, not a scheduled or convenient privilege!!! —R.E.B.

R.E.B.’s comments describe a fundamental difference in newer physicians which I have described in my tribute previously.  The Occupy Health Care movement needs to address the issue described by R.E.B. “Some of this new breed of colleagues also have a public display of disrespect for the indigent, confused, and simplistic patient.” This attitude can be found in other types of health care providers, as well.  Dismissing social factors that affect health is part of this phenomenon.

 “In itself the definition of patient doesn’t imply suffering or passivity but the role it describes is often associated with the definitions of the adjective form: “enduring trying circumstances with even temper”. Webster’s Dictionary.

Patients should not be patient with this.

It is important that physicians remember the Hippocratic Oath they took and understand this:

What is the essence of a Hippocratic Oath? Simple and echoed throughout time, whatever the words: “May I care for others as I would have them care for me.”
Daniel G. Deschler, M.D., FACS

As leaders of health care teams physicians need to set an example to all people in the health care setting.  If there is to be change, there needs  to be political activism on the part of physicians.  Health care should be available to all.  Physicians need to be paid, but also duly rewarded for honoring  the Oath they take on the day they become physicians.

 

Patient-Centered Medicine Part 2

WE ARE ALL PATIENTS!

The etymology of the word “Patient” is described on  Webster’s site  as:

derived from the Latin word patiens, the present participle of the deponent verb pati, meaning “one who endures” or “one who suffers”. Patient is also the adjective form of patience. Both senses of the word share a common origin.

On Graduation Day, medical students become MDs and repeat this Modern Hippocratic Oath.  Here are a few of the lines about patients.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick….

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

It is important to know what physicians think about the Modern Hippocratic Oath. In 2001, Nova did a program on the Hippocratic Oath and invited physicians to add to a doctor’s diary.  I found the following comments fascinating and illuminating and wish to provide them here today.

I have done my best working as an overworked, underpayed academic physician in high-risk obstetrics in a metropolitan city teaching university since then [saying the Hippocratic Oath at graduation from medical school]. I look back to the wisdom and guidance of Hippocrates everyday as I struggle to balance my duties, patient rights and allocation of hospital/societal resources for the sake of underprivileged and acutely ill mothers and their unborn children.

It is particularly evident in this modern era when more students are choosing residencies in radiology, anesthesiology, and pathology for the sake of their lifestyle. Our outstanding residency program in OB/Gyn has difficulty in filling our slots because of significant workload and lifestyle issues. These Hippocratic Oath dissenters tend to openly complain about excessive clinical workload despite obvious patient needs. Many of these individuals rationalize a “shift-mentality” as their future practice of medicine that justifies going home when they are “off-duty” despite any other professional obligations. It appears that “job quality” is a priority when compared to “professional duty” in the medical practice of these particular future physicians.

Some of this new breed of colleagues also have a public display of disrespect for the indigent, confused, and simplistic patient. Instead of becoming an advocate and/or protector of society’s weakest element, they would discard this needy population in preference for the medical procedure, economizing their clinical practice or optimizing their time at home with family and friends.

The most disconcerting attitude within this subset of these “New Age” practitioners is the blatant contempt and disrespect for their elder colleagues in our medical profession. Stated reasons are outdated practitioners and oblivious perspectives to the “modern face” of medicine. While I am still at an intermediate stage in my professional career, I continue to learn more about the practice and ethics of my specific profession from my soon-retiring colleagues than from any journal, Web site, or national meeting.

Generation X has recently matriculated into the field of clinical medicine, and our national healthcare system will only suffer further when we tolerate physicians who do not care, apply inappropriate medical techniques, and have little professional respect for the patient-physician relationship as outlined in this product of early medical philosophy.

P.S. I continue to identify a small group of non-generation-X students and residents each year who defy this societal transformation and who strive to follow in the footsteps of myself and my elders. My solution for this “Gen X syndrome in medicine” is a realistic Third World medical experience for junior trainees (which I have done on several occasions) to give them a perspective that healthcare is a right for all human beings, not a scheduled or convenient privilege!!! —R.E.B.

R.E.B.’s comments describe a fundamental difference in newer physicians which I have described in my tribute previously.  The Occupy Health Care movement needs to address the issue described by R.E.B. “Some of this new breed of colleagues also have a public display of disrespect for the indigent, confused, and simplistic patient.” This attitude can be found in other types of health care providers, as well.  Dismissing social factors that affect health is part of this phenomenon.

 “In itself the definition of patient doesn’t imply suffering or passivity but the role it describes is often associated with the definitions of the adjective form: “enduring trying circumstances with even temper”. Webster’s Dictionary.

Patients should not be patient with this.

It is important that physicians remember the Hippocratic Oath they took and understand this:

What is the essence of a Hippocratic Oath? Simple and echoed throughout time, whatever the words: “May I care for others as I would have them care for me.”
Daniel G. Deschler, M.D., FACS

As leaders of health care teams physicians need to set an example to all people in the health care setting.  If there is to be change, there needs  to be political activism on the part of physicians.  Health care should be available to all.  Physicians need to be paid, but also duly rewarded for honoring  the Oath they take on the day they become physicians.

 

What happened to "old school" medicine?

Times they are a-changing.  My dad wouldn’t have liked what’s happening. C. A. Hoffman, Jr.  was an old-school physician.  Often, to the chagrin of his office staff, he spent real time with his patients.  Five o’clock would come and go. His office was busy and filled with his laughter and booming voice.  A ringing office phone made him happy.  There was a blackboard in his office.  It had to be white with chalk, covered with his “To Do” list.

When I visited the office, I would sit on a strange-looking metal safe and watch him as he went from room to room.   That safe was so heavy that no one could move it.  It just sat for years in the middle of the busy office front, taking up space and getting in the way. Dad had an answering service to take calls after hours.  The service would call our house in the middle of the night and on holidays. No matter when, he would return his patient’s calls and order prescriptions for them.  If it was an emergency he would direct them to the Emergency Room of the hospital.  Then he would get up and meet them there.
He worried about his patients.  If he lost a patient, I would know about it because he would be incredibly sad.When he died, there was a line of people that wound around the funeral home, waiting to speak to my family.  I don’t know how many hands I shook that night or how many times I heard, “your father saved my child” or “if it hadn’t been for your father, I wouldn’t be here today.” After he died, my family opened up that safe.  There were thousands of invoices that he had just slipped into the safe and forgotten.  Many, many of his patients received his care for free. My father is not the only physician I have known to do this.  My pediatrician was another.  He did not die a rich man, but he was dearly loved. Now when I go to the doctor’s office, I’m expected to pay at least the copay, before receiving care.  If I couldn’t pay, would I get to speak to the MD?  No; I would have to explain my financial situation to someone at the front desk in front of the other patients.  Probably, I wouldn’t get to see the physician. When I call the doctor’s office after hours, an answering service takes the call.  My call is directed to a nurse on call who is looking at my records on line.  S/he doesn’t know me.  If it is an emergency, I’m sent to the Urgent Care Center.  I don’t see my physician.My father opposed universal health insurance, calling it “socialized medicine.”  But I wonder what he would say if he saw medicine as it is practiced today.Many say the change in medicine is due to the terrible financial burden most medical students incur to become physicians.  I’m afraid I don’t see it that way.  I believe that medicine has become a business and generosity has no substantial place in the business paradigm. Nowadays, I believe we need universal health coverage because there are so few “old school” physicians left.  They are a dying breed.