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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Sea-to-Sea: METAvivor and Metastatic Breast Cancer Awareness

1236342_223257914499618_934358087_n“…the biggest problem in the breast cancer business, and make no mistake, it is big business, is the fact that we’ve done nothing to change the death rate. NOTHING.” ~AnneMarie Ciccarella 

No Change in Death Rate From Breast Cancer Since 1970

Much media attention is brought to bear to advertise the breakthroughs in breast cancer research yet the truth is that the death rate from breast cancer is basically unchanged since 1970.  Actually, to be more precise, that is the death rate from metastatic breast cancer (MBC).

Sea-to-Sea For METAvivor

Real people are affected—people like little JJ and his father, Marine Lt. Col. Joseph Fagan.  Three years ago, Joe and Lainie Fagan were excited about the arrival of their new baby.  At age 29, and 34 weeks pregnant, Lainie received horrible news—she had metastatic breast cancer.  JJ was delivered immediately but his mama died nine months later.  “Joe Fagan and his wife Lainie were members of our local METAvivor group in Annapolis,” Dian CorneliussenJames (CJ) , founder of METAvivor explains.

“Joe approached me in February … said he wanted to tell people about METAvivor and raise awareness for MBC.  He wanted to do this by running across the USA … what did I think?” CJ says.  Needless to say, CJ was elated.

So February 1, 2014, Joe will start running.  The event is called Sea-to-Sea for MBC.  Joe will run from San Diego to New York City  3,845 miles, arriving in the Big Apple on Father’s Day.  He will be running through Arizona, Colorado, Kansas, Missouri, Illinois, Indiana, Ohio, Pennsylvania, New Jersey.  On the way he will meet with people who have metastatic breast cancer and recipients of METAvivor grants. “We plan for sponsorships and donations in kind to cover expenses. One hundred percent of funds raised through this fundraiser go to MBC research,” CJ states.

What is METAvivor?

METAvivor is an all volunteer organization founded 2009 to raise awareness of metastatic breast cancer and to fund research. Almost everyone working for METAvivor is a patient with metastatic breast cancer.

It’s hard to compete for media attention: the world of funding for breast cancer is primarily focused on prevention and awareness of breast cancer.  Pink, the color of breast cancer awareness, is everpresent, especially in Breast Cancer Awareness Month, October—what advocates for change call ‘Pinktober.’  “The pink community is enormous and has a huge amount of funding. They do everything with big splash … paid experts … “ CJ says.   METAvivor puts 100% of donations and fundraiser proceeds into its [research] grants. Others must raise millions to do what we can do with $250,000.  We want you to know that this week we chose 4 new grant recipients … Packages total $320,000!”

Metastatic Cancer

CJMany believe that the money that is donated to large philanthropic organizations is for research for a cure to breast cancer.  This is, unfortunately, not the case.  “We need to force a change in the conversation. Breast cancer doesn’t kill people. METASTATIC disease does. Their needs are URGENT,” AnneMarie Cicarrella,  Sea-to-Sea Run Volunteer, states.  “Prevention and early detection were noble goals but they have not worked.   How long will we practice triage in reverse?” CJ asks.

The primary goal of Joe’s run and for METAvivor is to bring *significant* attention to the metastatic breast cancer community. “  Their voices are lost in the pink hype,” AnneMarie says.

“This event is happening because the majority of public doesn’t even know what metastasis is.  We want to educate the public, raise awareness that 90% of all cancer deaths are from stage IV cancer,” says CJ.   Stage 4 is the medical terminology for cancer that has spread from the original site, like the breast, to other organs of the body.  It is fatal.  “We want to raise awareness that 100% of all “Breast Cancer” deaths are from MBC. …we want to raise awareness that only 2-5% of research funds go to stage IV cancer collectively,” says CJ.

The statistics–that 90% of all cancer deaths come from metastases, that 100% of all breast cancer deaths come from metastatic breast cancer, and that only two-to-five percent of research dollars go to studying stage IV cancer—are chilling.  But that is not the only problem with the numbers.   “Actually, the numbers of those with MBC are greatly distorted. WE ARE NOT COUNTED. We are counted only at initial diagnosis,” CJ relates.

What’s Not Happening in Research

METAvivor’s goal is to get commensurate funding, that is, funding for metastatic cancer that is equal to funding for awareness and prevention.  “Commensurate funding is the only way to stop the deaths of roughly 600,000 cancer patients every year in the US,” says CJ.  “Metastasis researchers are trying hard to find solutions, but at only 2–5% research funding … progress is snail pace.”

“We need these researchers to be funded. METAvivor is the only organization w peer-reviewed research grants solely for MBC. This is what Sea-to-Sea For MBC is trying to do.   Spread awareness.   Hear the patients.   Hear the researchers along the route.   Spread the word,” says CJ.

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AnneMarie explains her interest in metastatic research with  her mother’s story,  “Early detection doesn’t guarantee anything. My mom’s mets came after a 25 year dormancy.  My mom is a 2-time survivor.   She surpassed five years on both breast cancers.   She’s in the ‘good stats’, but she’s metastatic. ”  CJ also shared her experience.  “Only about 6% of BC is known to be genetic. I was told I was low risk .. .but am metastatic.   You never know,” she says.

“Metastatic cells can exist prior to one having a detectable tumor.   These cells do not respond to primary BC treatment.   Hence MBC,”  CJ highlights. “People can metastasize any time. Mets cells can lie dormant over 20 years.  Everyone is at risk.   Not to scare.   Just being realistic.”   Anne Marie points out, “All of the questions posed… why cells leave, what causes them to wake up from dormancy…this is WHY work of METAvivor is so important.”

At this point, when the cancer spreads to other places in the body, medicine can only offer treatments to stave off the spread.  One type of chemotherapy and/or radiation therapy is used, when it fails, another is used.  With metastatic disease, there is a cycle of one difficult treatment with side effects after another until there is no treatment left.  The patient dies.  “With metastatic friends, my hope is that they never run out of treatment options. Theirs are very limited,” AnneMarie states.

loriLori Marx-Rubiner, METAvivor Board member and Director of Nationwide Ambassador Program agrees, “We don’t know WHAT causes cells to leave the breast, we can’t distinguish those which will from those which won’t.   Studies are in their infancy…”  The fact that so little funding is applied to metastatic breast cancer is extremely frustrating for those whose breast cancer has metastasized.  “It’s good to try to prevent MBC.   BUT this does NOT help those who have already metastasized.   We want research to extend our lives with quality and ultimately to save lives.   This is not helped by prevention of mets research.  I’d like ALL chronic disease curable, I’ll settle for chronic.   I’d like to see my son marry, grandkids.  Many live years with MBC but life expectancy is still about two years. Quality and quantity…we need both!”

Volunteers NEEDED

If you want to make a difference and fund research to extend lives with quality and quantity, then be a part of Sea-to-Sea for MBC. There is a need for volunteers for the Sea-to-Sea for MBC event.  Take a look at the <a href=” https://t.co/VC2weNLrnC”>Facebook Page</a> and sign up!

“As metastatic cancer patient, more than anything we need the truth spoken, we need to be seen and heard,” says Beck Bills, breast cancer activist.

 

The Change We Need: Avoiding Harm in Hospitals

I first posted this on OccupyHealthcare September 10,2012.

The Institute of Medicine (IOM) recently published a substantial report on the healthcare system in the US.  According to the report, in the US 1/3 of patients are currently harmed during their stay at a hospital.  These harms are called Hospital Acquired Conditions (HACs).

In a 2012 article in the Journal of Health Care Finance, Nero, Lipp and Callahan analyzed 2007-2008 patient data from the New York State Department of Health’s Statewide Planning and Research Cooperative System.  Of the 4,853,900 patients whose discharge information was included in the analysis, the most frequent hospital acquired conditions was bedsores, also known as pressure sores or the technical name “decubitus ulcers.”  Their annual cost estimate for New York alone was nearly $680 million and 376,546 days of hospital care.

For the US, estimates of cost range between $6 and $15 billion annually (Markova & Mostow, 2012).  The costs in human suffering are also significant.  When Ailman et al (1999) conducted a comparison of patients who developed bedsores and those who had not; they found significant increases in hospital-acquired infections (45.9% vs 20.1%) and other complications.  Hospital costs and length of stay were greater for those who developed these ulcers.

My interest in decubiti is personal.  In the 1980’s and 1990’s my mother worked part-time in a hospital in North Carolina in quality control.  When researching cost and quality issues, she found that a significant amount of money and time was spent on a problem that patients were getting in the hospital, that was preventable, that was painful and could be life threatening.  This was the problem of bedsores.

She spent an enormous amount of time trying to educate the hospital administration, nursing staff and fellow physicians in the need to prevent and treat bedsores.  She made some inroads:  the hospital hired a skin care expert who trained the staff.  But in the end, budget cuts reduced or eliminated jobs in quality control at that hospital.

One of the saddest and most disturbing ironies of her story is that, in 1999, when she was a patient, dying of metastatic breast cancer in that hospital, she got a bedsore.  Because training had been discontinued, the nursing staff did not know how to prevent this ulcer from occurring, nor did they know how to treat it. Thankfully, my mother was still able to help my sisters and I find the skin care expert that had been hired previously.  Through that expert, we got the type of dressing that mother needed to promote healing.  We took over, turning mother, changing her dressing, giving her bed baths and doing “bedpan duty”.  We were there with her, night and day, for two months.

There was a patient in the next room over who had no family.  He also had a bedsore and we could hear him crying, suffering from the treatment he received.  My mother’s bedsore healed up as we took care of her, despite her cancer.  We showed the nurses what we were doing and asked if they could use the dressing on the man next door.  Sadly, we were told that if his physician did not order the dressing, there was nothing that could be done for him.

The name of the IOM’s report is “Best Care at Lower Cost: The Path to Continuously Learning Health Care in America.”  In my view, continuously learning healthcare means that just because there is improvement in quality, efforts to maintain quality control cannot be stopped.  It means continuous training and monitoring.  It means dealing with this very real problem.  Getting bedsores is preventable.  Patients in hospitals and nursing homes do not have to acquire these life-threatening ulcers.  But it requires awareness, intense devotion, continuous monitoring and education.  It also requires enough people.  People who are willing and able to do the physical work, people who have the energy, time and devotion to care and people in power who remember that the patient in that hospital bed could be their mother, sister, brother, father, child, aunt, uncle, grandparent or friend.  Patient safety must be at the center of all the care we provide and it is imperative that we actively work to prevent avoidable complications in care.

References:

Ailman, R., Goode, P., Burst, N., Bartolucci, A., & Thomas, D. (1999). Pressure ulcers, hospital complications, and disease severity: impact on hospital costs and length of stay. Advances in Wound Care. 12(1):22-30.

Markova, A. & Mostow, E. (2012).  US skin disease assessment: ulcer and wound care.Dermatological Clinics. 30(1):107-11, ix.

Nero, D., Lipp, M. & Callahan, M. (2012). The financial impact of hospital-acquired conditions.Journal of Health Care Finance. 38(3):40-9.

Patient Safety: Costs in Healthcare

For many years my mother worked part-time in a hospital in North Carolina in quality.  In researching cost and quality issues, she found that a significant amount of money and time was spent on a problem that was preventable.  It was a problem that patients got in the hospital.  It was painful and could be life threatening.  It was bed sores also known as pressure sores.

She spent an enormous amount of time trying to educate the hospital administration, nursing staff and fellow physicians in the need to prevent and treat bedsores.  She made some inroads:  the hospital hired a skin care expert who trained the staff.  But in the end, budget cuts reduced or eliminated jobs in quality control at that hospital.

One of the saddest and most disturbing ironies of her story is that, when she was a patient, dying of metastatic breast cancer in that hospital, she got a bedsore.  Because training was discontinued, the nursing staff did not know how to prevent this, nor did they know how to treat it. My mother was able to help my sisters and I find the skin care expert that had been hired.  Through her, we got the type of dressing that mother needed to promote healing.  We took over,  turning her, giving her bed baths and doing “bedpan duty”.

There was a patient in the next room over who had no family.  He also had a bedsore and we could hear him crying, actually suffering from the treatment he received.  My mother’s bedsore healed up as we took care of her, even though she had cancer.  We showed the nurses how we were caring for her and asked if they could use the dressing on the man next door.  Sadly, if it was not ordered by his physician, there was nothing that could be done for him.

The Institute of Medicine has just put out a substantial report, 45o pages, which describes what is wrong with healthcare in America.  It is called “Best Care at Lower Cost: The Path to Continuously Learning Health Care in America.”  Continuously learning healthcare means that just because there is improvement, efforts in quality control cannot be stopped…it means continuous training and monitoring.  According to the report, in the US 1/3 of patients are actually harmed during their stay.

There are efforts to help.  Campaign Zero is an effort to “provide safety strategies to patients and their family-member advocates to prevent medical errors.”  OccupyHealthcare supports promoting patient safety to reduce healthcare costs.  Take a look at their websites and take this survey.