Patient Advocate–Pat Mastors

Empowered Through Loss

Creating A Patient Advocate

patmastors1patient advocatePat Mastors’, patient advocate, “medical awakening” came with the tragic loss of her father. “My father, an otherwise healthy 76-year-old, fell down stairs at home and fractured vertebra in the neck. Surgery to fix it went well. But his intestines burst two days post-op. Later we learned it was from C.diff.”

Clostridium difficile or C. diff is a bacterial infection that “is most commonly associated with health care, occurring in hospitals and other health care facilities where a much higher percentage of people carry the bacteria,” according to Mayo Clinic’s website. It is easily passed along via spores that last on surfaces for weeks or even months.

Because of this hospital-acquired infection, Pat’s father survived only six months. “As a reporter, I felt people needed to know how easily unintended harm happens in even the best hospitals. Plus as his advocate and only daughter, I wondered if I’d known more, could I have made difference? I’ve been working on it ever since.”

Simple Communication is Needed

Having been a television newscaster taught Pat “efficient, simple communication of critical information empowers people to make informed choices.” Applied to healthcare she believes it transformative: “cultivates a more responsive and transparent system.” Her journalist’s training opens her mind to the many sides of any story, “I have spent years doing my best to understand the entire landscape and all the players in it. Nothing’s simple in healthcare!”

What You Need To Know Before Going Into the Hospital

Through her patient advocate research Pat’s gleaned five of the most important things someone going into the hospital need to know:

1) The third leading cause of death in the US is errors and infections. “Up to 440,000 are killed per year.”
2) “Ask your surgeon, “How many of these have you done? What’s the infection/complication rate? You learn a lot by how s/he responds.”
3) “Bring an advocate! Don’t go it alone.” Pat recommends a firm, non-adversarial professional who knows how to deal with people.
4) Understand that shift changes and “hand-offs” to other staff, are the time when errors happen—“things slip through the cracks.”
5) “Take notes, speak up if you see disconnects.”

Have Your Family With You In Hospital

Knowledge is power, and Pat knows firsthand that this is the case. Suddenly her daughter, who had walked the Appalachian Trail, was in the hospital. Jessica came down with a rare paralyzing nerve disorder called Guillain-Barré syndrome (GBS). In GBS a person’s own immune system damages their nerve cells, causing muscle weakness and sometimes paralysis. “The challenge was to get the best from modern medicine, AND the best HUMAN investment from us, clinicians, input from other advocates, research, nutrition, etc.” Pat and the whole family were at Jessica’s bedside. “With shift changes and handoffs, we (family) were the only constant. We helped keep clinicians’ focused on her.”

Her family’s presence helped. Pat tells the story of one of many interactions which show the difference that can be achieved by having the family present. Jessica was having a radiological test and her pain medicine was wearing off. Pat asked the technician about getting transport back to Jessica’s room. She was told it would take as long as it takes for Transport to arrive. “I asked “how long before Transport gets here”?” The Chief of Radiology overheard the “I don’t know” answer and he himself wheeled the gurney! “This does not happen if you are not there to look them in the eye….” Pat says. “All doctors and nurses feel good when they are being human and kind with you… There are just so many distractions, WE FAMILY members’ presence reminds them.”

With the efforts of all the players, (physicians, nurses, family) focused on Jessica, she was out of the hospital significantly earlier than projected. “In 7 days (instead of 23), fully recovered in 3 months (instead of 6-12),” Pat states.

The Patient Pod

ABOUT-Patient-Pod-image-alone-102.5-kb Patient AdovcateMaking a difference for others is part of Pat’s advocacy. She created the Patient Pod. “I created it to bring patients hand hygiene, access to personal items, plus a way to take and store notes, post message (like “patient white board”) and keep discharge stuff organized. I wanted patients to have autonomy, dignity, things comforting and familiar, in a place where nothing you touch is yours.” In addition, the Patient Pod includes a plastic sleeve for the TV remote control, one of the dirtiest items in a patient’s room.

Design to Survive

She is also writing. Her recent book as a patient advocate,Design to Survive, proposes the IKEA model for theDTS-New-Cover Patient Advocate healthcare setting. She shows how a “model of partnership, savings and shared responsibility serves both provider and consumers worldwide.” As her table of contents points out:

“If IKEA designed health care…

1. We would always feel welcome

2. Instructions would be understandable to a 5th grader

3. A one-stop website would help us learn, connect, and plan

4. We’d get tools for success when we walked in the door

5. We customers would have to roll up our sleeves and help

6. Prices would be clearly marked…and we’d pay our own bills

7. The team that serves us would act more team-like

8. Hackers (the good kind) would thrive

9. It would live to innovate.”

Pat believes that simplicity saves lives and in that simplicity the patient’s voice is essential. “Patients/consumers need to speak up where appropriate, take time to give feedback, good and bad. Doctors, nurses are under the gun for performance: when they go the extra mile, write their bosses! If care’s poor, tell that, too.”

Pat Needs Your Help to Help Others

Presently Pat is looking for funding to educate more patient advocates, “We need more opportunities for the patients voice to be integrated into all aspects of care. The problem is, who are ‘Patient Advocates’? We’re self-defined, like ‘travelers.’” She believes that Patient Advocates need more professional development opportunities “so we can bring not just stories, but tangible and actionable take-aways to our audiences.” If you have any ideas for funding this endeavor, please comment on this blog post or at Pat’s Blog.

This post was developed from the transcript of #HCHLITSS chat December 19.

First published on #HCHLITSS Health Communication Health Literacy and Social Sciences.

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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

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.