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The Patient's Voice in Action

Posted By Administration, Friday, October 28, 2016

If you are involved in patient safety, you’ve probably heard your share of bad news.
This is a good news story.


by Patricia McTiernan, MS

Marian Hoy attended the 2016 NPSF
Congress on a patient scholarship and
"the lightbulbs just went off.”

 

In January of 2014, Marian Hoy, then 66 years old, became ill with what she thought might be the flu. “I felt bad for three days,” she recalls. “There were red flags that it wasn’t just the flu, but I didn’t recognize them.”

A former Dallas police officer and police trainer, Ms. Hoy lives in a small town outside of Austin, Texas. Her illness led her to become so disoriented that she called the town’s chief of police and asked him to bring her a soft drink. “I know the police chief,” she says, “but I never would have called him for that had I not been suffering confusion.”

 

When she realized the trouble she was in, she called the EMTs and was taken in the middle of the night to the hospital that she chose, Seton Southwest, part of Ascension Healthcare. Doctors there discovered that scar tissue from a long-ago surgery had surrounded Ms. Hoy’s small intestine and stopped her system. She underwent surgery to repair the problem, and in the days afterward she experienced complications that included sepsis and pneumonia.

“Everything was going south” for a time, she recalls now. “I would say to the doctor, ‘am I in danger?’ because I couldn’t say the words, ‘am I going to die?’ And he would say, ‘No, Ms. Hoy, you are not in danger.’

 

“In other words," she says, "he thoughtfully used my own words, so as not to frighten me.”

 

If you’ve read this far you are probably thinking, “Wasn’t this supposed to be a good news story?” Indeed, Marian Hoy spent three weeks in the hospital, and she recovered very well. But that’s not the only good news. When she tells her story, it’s all about her experience of care.

“They treated me like I was the only patient they had,” she says. “They gave me very individual care. When I called for a nurse, they were there in minutes. My doctors, surgeons, internseverybody knew my labs over the 24-hour period, but they came to my bedside to talk to me to see if I could put together a declarative sentence and understand their questions, something I was unable to do when I was admitted. And they spoke to me with language I could understand.”


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Patient Experience Matters

Patient experience of care has been defined as “the sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care.” A 2013 study found “patient experience is positively associated with clinical effectiveness and patient safety,” and supports the use of patient experience as a measure of quality.

Ms. Hoy’s experience puts a face to that research. Grateful for the care she had received, she wrote a letter of thanks. She was subsequently recruited to join Ascension’s system-wide Patient and Family Engagement Steering Committee. Through her work with Ascension, Ms. Hoy became aware of the NPSF Patient Safety Congress and was awarded a patient scholarship to attend the 2016 meeting.

 

“When I went to Arizona for the NPSF Congress, I had no idea what to expect,” she says now. “I was extremely naïve about safety in hospitals. I don’t know that a lot of patients understand the gravity of patient safety issues. The lightbulbs just went off.”

As a former law enforcement officer, Ms. Hoy was particularly interested in issues discussed during a breakout session on workplace violence in health care, which is on the rise. “Until we include an in-depth discussion of how today’s violence can and does impact the hospital setting, I don’t think we’ve completed the conversation on safety,” she says.

Today, Ms. Hoy serves on three patient advisory boards within the Ascension system. She is intent on sharing her experience because, “they saved my life, and there is no way one can repay that debt.”

She wants people to know about it. But she is also adamant about urging others to speak up and bring an advocate with them if they can when they visit the doctor or hospital.

“Participate in your own illness, ask questions,” she says. “If your doctor doesn’t want to answer questions, find another doctor. This a conversation about your health.”

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Do your health care practitioners make it easy for you to be engaged in your care? Comment on this post below. Note: to post a comment you must be logged in. Register or log in.


Patricia McTiernan, MS, is editor of the P.S. Blog. Contact her at pmctiernan@npsf.org.

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Tags:  2016 NPSF Congress  patient advocate  Voice of the Patient 

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Advocate, Educate, Communicate: What Patients Need to Know

Posted By Administration, Monday, June 20, 2016
Updated: Monday, June 20, 2016

It is always the obvious that proves challenging and communication between doctor and patient is no exception.


by Betsy M. Cohen, CRC, LRC, CCM, ABDA

  

In 2012, I left a pile of paperwork on my desk convinced that I would complete it later that afternoon when I returned from my first colonoscopy. It never occurred to me that morning that my colon would be perforated, that my insistence that something had gone wrong during the procedure would be ignored, and that I would require emergency surgery to resect my colon. I did not imagine that I would wake up in an intensive care unit and face a series of complications and mistakes that would change my body and life forever.

 

 

I did not imagine that I would
wake up in an intensive care unit
and face a series of complications
and mistakesthat would change
my body and life forever.  

   

If you or a loved has one experienced a medical accident or an unexpected outcome from a medical procedure or hospitalization, perhaps this sort of nightmare sounds familiar. You know the surreal feeling of losing control of your health, of being engaged in battle to regain your physical and mental equilibrium while desperately attempting to find your way back to some semblance of a quality life. 

 

I have worked in and around health care for 30 years, but was unable to prevent three medical errors resulting from a routine procedure. Ultimately, I survived and created a new way to flourish by actively taking control of my well-being. During my recovery, I wrote a book to help others navigate their health crises and reclaim their lives.

 

Here are the most important tips that I offer to anyone endeavoring to overcome medical challenges.

 

1. Advocate. One of the most difficult things to do when you are lying vulnerable in a hospital bed is to feel powerful, able, and strong. Each of us needs an advocate regardless of our physical condition or well being. Solicit a family member, friend, or case manager at the hospital to listen with you to your doctor’s recommendations and advocate on your behalf.

 

Be certain that everyone involved in your care knows your wishes about pain medication, additional tests and procedures, as well as what kind of heroic measures you sanction as a component of your care. If you have allergies especially to medications, review these with each new provider involved in your care.

 

Never assume that each doctor or nurse has thoroughly read your chart or is aware of your medical history. Health care providers are human and mistakes occur. Speak up to prevent additional complications whenever feasible.

 

2. Be Open. You may have a speedy and complete recovery after a medical accident or, like me, your body may only experience a partial restoration of function. Become an open-minded and educated consumer of medical and health services by inquiring about all of your treatment options.

Discuss any interest you have in exploring complementary, alternative medicine, and rehabilitation therapies with your doctors. Complementary and rehabilitation treatment providers tend to focus on function and prevention with the goal of maximizing your physical, emotional, spiritual, and behavioral health. Treatments such as acupuncture; cranial sacral therapy,; occupational, physical, and speech therapy; biofeedback; and mindfulness training are but a few of the possible adjunct services that you may find helpful, with regard to pain management, improved sleep, and learning to regain your capacity to manage your day-to-day responsibilities irrespective of whatever illnesses or chronic conditions may continue to persist.

 

3. Communicate. It is always the obvious that proves challenging and communication between doctor and patient is no exception. When you experience a medical crisis, your health care team will often be focused on the technical aspects of what transpired and what they need to do to stabilize your health.  None of that changes your need or right to know what is happening to your body, what efforts are being made to rectify the medical issues that exist, and your treatment team’s thoughts about your prognosis. Trusting your providers is important, but blind trust benefits neither patient nor doctor.

Be certain to speak up and talk to your doctors about concerns that you have related to your health or healing. No matter how invested anyone is in your care, you are the only person who will eventually go home and live with your body, as well as the impact that these medical events will have on your health. If your medical team is not communicating the information that you need to hear, don’t be afraid to initiate that conversation to assure yourself that everyone is committed to your best possible recovery outcome.

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Betsy M. Cohen is a Certified and Licensed Rehabilitation Counselor, a Certified Case Manager, and an American Board Certified Senior Disability Analyst specializing in the treatment of individuals who are affected by neurological and neuropsychiatric conditions and chronic illnesses. She is the author of Illness To Wellness: Reclaiming Your Life After A Medical Crisis. Ms. Cohen is also a member of the American Society of Professionals in Patient Safety (ASPPS) at NPSF.

Tags:  patient advocate  patient story  Voice of the Patient 

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