Smaller and faster patient-centered outcomes research: More than 12 years ago

     I had the pleasure of working with Sue Sheridan at the October PCORI (Patient Centered Outcomes Research Institute) workshop , which brought together 150 members of the public to advise on a new process for funding research into patient-centered outcomes.  Sue was pulled into this work more than 12 years ago by the severe and permanent injury of her son at childbirth.  In hindsight, the reason is clear:  Hospital staff had not performed a simple bilirubin blood test that would have identified the risk he'd develop a rare, devastating condition related to jaundice ["kernicterus"] and cerebral palsy.

Sue and other mothers with similarly heartbreaking stories formed an advocacy organization, Parents of Infants and Children with Kernicterus [PICK].  PICK forcefully and successfully pushed for the American Academy of Pediatrics to issue a new standard of care, requiring all newborns to have an inexpensive blood test that can warn of incipient jaundice.  When hospital doctors and nurses prevent jaundice, which can be done inexpensively by using a special light (phototherapy), they forestall the rare but devastating related complications of kernicterus and cerebral palsy.   

Yet now, more than 12 years later, it's likely that Labor and Delivery doctors and nurses perform this blood test on only a fraction of newborn babies.  Hospital staff adopt best practices like these slowly; we often decry the 17-year gap from the identification of an improvement in medical practice until its widespread use.  And it's hard to believe, but we don't know how many babies go without this inexpensive, life-saving treatment.  

PCORI should immediately fund a study of hospital claims  to ascertain how many newborns lacked this formally approved life-saving inexpensive blood test. 

Even more importantly, this lag between knowledge and practice shows that our process for updating clinical practices is fundamentally broken.  This should have been an easy one:  heart-breaking permanent harm to babies in a relatively small number of treatment sites; inexpensive diagnosis; inexpensive treatment; enraged and organized mothers.

PCORI should fund a small project, for the analysis is very easy.  Indeed, it is particularly important that the study be small, for that will limit the tendency of academic researchers to inflate its scope to consider complexities that attract researchers.  Small is beautiful.  The projects will be finished soon, allowing their more rapid use. Funding small projects will allow innovation in multiple areas, planting many seeds in the knowledge that a fraction will sprout.  It hedges the risk that a few large studies may not yield persuasive and actionable recommendations.  Funding small studies will have political benefits as well, in empowering small organizations of activists that will support PCORI's mission.  

My son was born prematurely, and an alert nurse in the neonatal intensive care unit (NICU) noticed the yellowing jaundice of his skin just as it started.  They put my tiny boy under bright lights, which prevented any build-up of bilirubin, and prevented kernicterus.  There, but for the grace of God, went I.  Our luck held.  I hope PCORI's funding decisions will give outcomes like my son's to many more parents.

Rocky Marciano and Health Care for All's Consumer Health Quality Council

The boxer Rocky Marciano retired young, at age 32, unbeaten after 49 victories.  So, too, with us:  we disbanded the CHQC this week after a six-year run.  Or maybe we were more like Sylvester Stallone's Rocky:  we got heart, and we always felt like the underdogs, even if, like Rocky, we were oddly fated to have a Hollywood ending.  

Our knockouts:

Successfully advocated for laws regarding: Patient and Family Advisory Councils (PFACs) and Rapid Response Methods (RRMs) in all Massachusetts hospitals, public reporting of infections and serious events, nonpayment for care needed following a serious event, checklists in all Massachusetts hospitals, apology and disclosure following medical errors, shared decision-making, and tracking and reducing harm from CT scans.

Established workgroups to track implementation of PFACs, RRMs, public reporting and nonpayment. Created a PFAC informational web page and a hospital PFAC web page with links to all hospitals' PFAC annual reports. Gathered and analyzed hospitals' PFAC reports and wrote a summary report on their 2011 PFAC reports. Requested information on the use of Rapid Response Methods from all Massachusetts hospitals and created a Rapid Response Methods web page.  Sent written comments to the Department of Public Health following the release of reports on infections and serious events.

Created a website, The Assertive Patient, with resources for consumers who have had difficult healthcare experiences. The site includes a list of all Massachusetts hospitals with information on how to file a complaint or air concerns.

A story bank of written and videotaped healthcare stories from Consumer Council members about difficult healthcare experiences and how those impacted hope to make a difference in improving care.

Bravissimo! from me as former president, to our current and former Dream Team members:

Dalia Al-Othman

Linda Burgess

Celestine Cox

John Evers

Myra Fournier

Ginny Harvey

Barbara Holtz, Vice President

Linda Klein

Laura Liebster

Kuong Ly

James Madden

Lisa Nash

Dori Peleg

Elizabeth Pell, former Vice President

Joseph Prates

Lucilia Prates, first President

Linda Roberts

Keely Sayers

Margot Schwartz

Kim Slack

Marla Stein

Jamie Stevenson

Jen Tosca

Nicola Truppin, President

Deb Wachenheim, HCFA Health Quality Manager

Lee Weinstein

Su Yoon

Alec Ziss

Thanks to Deb Wachenheim for the summary of our accomplishments, and for her dedication throughout.

Expectations of surgery: She's grateful, But

Alina Tugend's story

My father recently had his second knee operation in a year.  The first time, things went poorly.  His rehabilitation was difficult and months later, he still could not walk well or, even more important to him, play tennis.

He had the operation a few weeks ago, and he's already doing much better.  Different doctor, different outcome.  And perhaps, most significantly, different expectations.

"The first surgeon just raised my expectations unrealistically," my father said.  "He told me that in a few weeks I would be out on the tennis court."

I started thinking about how we manage expectations after my father's operation and after a friend, Amy, told me she recently had her cancerous thyroid removed.  The cancer was contained, but one of her vocal cords was paralyzed.  

She wasn't warned about this, but has since learned it is a common side effect of such an operation and can last up to a year.  It makes talking, eating and drinking difficult.

"It's not what I bargained for," Amy said.  "I'm grateful to be alive, but if I had just known, I would have been more prepared before and afterwards."

Advice to people considering surgery:  Consult a professional patient advocate, or read about the experiences of older and wiser patients on the Internet, before consenting to surgery.

Read a story about a man's ill-informed consent for surgery.  Thanks to Alina for her article, "What Did You Expect?  It Makes a Difference," excerpted here from the NY Times of Jan. 14.

Healthcare acquired infections: Even Pres. Garfield

The saddest part of the story of the assassination attempt on Pres. Garfield more than 100 years ago is the medical treatment he received in the months after he was shot.  Joseph Lister had recently shown that antisepsis [sterile conditions] greatly reduced infections, so doctors throughout Europe had already widely started using carbolic acid and other practices.  But Garfield's doctors repeatedly poked into his bullet wound with unwashed hands and probes, causing infections that ultimately killed him.

The story is so so sad because it's so familiar.  Healthcare-acquired infections still injure many thousands of patients.  Evidence-based practices to prevent them often go unused.

The head physician treating Garfield even had the gall to bill the government the equivalent of $1 million in today's dollars for his treatment.  This, too, feels far too familiar, as payers continue to pay exorbitant prices on our behalf for medical errors.

Advice:  Read Candice Millard's excellent book, The Destiny of the Republic.

Read another president's medical story.

Ideal care in the Intensive Care Unit: You sleep well

Dr. Peter Pronovost's vision of care in the Intensive Care Unit:

Imagine your loved one is admitted to the ICU after cancer surgery, you are actively involved in his or her care at a level comfortable to you, providing information about symptoms and concerns, knowing what is going on and actively participating in decisions.  

Clinicians are using technology to predict what harms your loved one is at risk of suffering.  Using technology the clinicians have a checklist of the 200 therapies your loved one may need to receive on any given day, to prevent harm. You can see when they are due, when they have been done. And most are automated because the devices monitoring care are connected.  

You sleep well knowing the infusion pump would alert staff and shut off if your loved ones breathing slowed. You are confident that staff will have time to provide comfort for your loved one, listening to their concerns, holding their hand. You attend clinical rounds daily, or whenever you choose–sometimes by video conference sometimes in person.  

You are provided a daily report on how well your loved one’s symptoms were managed, how well the team performed those 200 things and the results it achieved. The staff continuously works to learn and improve. You can feel that the staff work as a team, and are joyful. You can feel you and your loved one are treated with respect and dignity. And amazingly, care is much less expensive.

All of this is possible today, technology is not a barrier. The engineers can do this now. The question is–do we believe and will we collaborate?

See another story about Dr. Pronovost.  Thanks to Dr. Pronovost for this excerpt from his speech on August 28 at the launch of the Gordon and Betty Moore Foundation's Patient Care Program. 

Patient Family Advisory Councils: Two hospitals' success stories

Each of the hospitals in Massachusetts now has a Patient/Family Advisory Council (PFAC).  The hospitals described their PFACs' activities over the last year, and members of HCFA's Consumer Health Quality Council reviewed, summarized, and tallied the responses, with Deb Wachenheim's help.  The CHQC members identified two hospitals' PFACs as role models, to be emulated by other hospitals:  Milford Regional Medical Center, and Beth Israel Deaconess Medical Center.  Leaders of those hospitals' PFACs described their activities at yesterday's meeting of the Massachusetts Coalition for the Prevention of Medical Error.

Kim Munto, the Director of Risk Management at Milford, described their PFAC's activities in her presentation, elaborating on them in a later interview.  Since their PFAC members are particularly attuned to health literacy, the application for prospective PFAC members is written in Spanish and Portugese, as well as in an English version.

Milford's PFAC also completely reworked the hospital's discharge instructions, translating clinical language into terms more often used by laymen.  The PFAC's suggestions greatly clarified the instructions about medications, e.g., which ones to stop taking, which to continue taking, and in what doses.  The PFAC also stimulated changes to the forms used to accurately convey information on patients as they transitioned from the hospital to each of three extended care facilities (ECFs).  The PFAC performed several rounds of intensive review, working with the three outside ECF organizations, in an example of collaboration across healthcare organizations that is all too rare.  

To help Milford begin providing mealtime menus to patients for the first time, the PFAC reviewed the menus and the presentation of the food, and then at a PFAC meeting, ordered dinners from the menu, which were delivered to the conference room.

For Beth Israel Deaconess Medical Center, Barbara Sarnoff Lee, the Director of Social Work, and Elana Premack Sandler, Project Leader for Patient and Family Engagement, described their four PFACs as components of a broader strategy of engaging patients.  BIDMC's Neonatal Intensive Care Unit (NICU) had been the first to set up a PFAC, followed by PFACs for the ICU, the entire hospital, and Universal Access.  BIDMC also engages 100 patient advisors in pairs on committee seats, department-specific groups with embedded advisors, focus groups for patients especially concerned with a single issue, and ad hoc projects.  

A PFAC member had mentioned how much easier it was to heal when it was quiet at night.  The hospital applied best practices to quiet the patient areas, creating a notable improvement in the eyes of patients surveyed in HCAHPS:  33% more patients said it was always quiet at night after these changes (60%) than before (45%).  

BIDMC had noticed an opportunity for improvement in pastoral and spiritual support for patients, based on FS-ICU (Family Satisfaction - Intensive Care Unit) data. Following redesign efforts with feedback, the FS-ICU scores improved.  Another effort, to improve the ICU's waiting rooms, also raised FS-ICU scores.  In a ripple effect of the improvement, seeing the change, hospital administrators then awarded more funds for renovating the waiting rooms. 

These are merely a few examples of many more at these hospitals, and indeed, at many other hospitals in the state. The Consumer Health Quality Council hopes to encourage hospitals to test and adapt these practices so their patients can also benefit.

This blog post was written by Ken Farbstein, a long-time member of the Consumer Health Quality Council, and professional patient advocate at Patient AdvoCare.  

Enabling vs. self-care for caregivers: Mother Theresa's job is taken

Here’s more information Dr. Diana Denholm, author of The Caregiving Wife’s Handbook, shared with me when I interviewed her a few weeks ago:

While I was totally unprepared for being a caregiver, as a therapist I knew about behavior and communication. I began to blaze my own trail by employing that knowledge in caring for my husband. I created and refined specific methods. When I found they worked consistently over time, I decided to share them with other caregivers. Because there is often so much anger and resentment in the caregiving process, one of my goals is to shift caregivers from using adversarial methods to using collaboration. This will result in respect and compassion for each other and a more peaceful and loving household.

When I asked her about typical problems for caregivers, she shared that a huge issue is to avoid enabling. Enabling, also called codependence, is doing for someone what they should be doing for themselves, allowing (enabling) them to continue their weak or inappropriate behavior. A common mistake caregivers make is thinking that everything is their responsibility. Women may tend to do this a little more than men because they are nurturers by nature, while both men and women may jump right in because their spouse’s life is at stake. This allows them no spare time and keeps them from caring for themselves. To avoid this trap, Denholm suggests that you work together, rather than enabling or controlling the ill person. Don't do for the cared ones what they really can and should do for themselves. Enabling creates invalids. Don't micromanage what they are able to do, even though it may be far from perfect. The less you enable, manage, or control, the more time you’ll have for yourself and the less stress you’ll experience. When appropriate, be glad to say, “It’s not my job,” even though others might think otherwise.

The upside is that you’ll actually create precious time for yourself by not taking on jobs that should be done by others – including your loved one. If you do less enabling with everything and everybody, you'll create more energy for yourself and you'll have less anger. Mother Theresa's position has already been filled! 

When I asked about self care, Diana told me that with more time you’ll have more opportunities for self care, if you give yourself permission. That's hard to do, because we're taught from childhood to be selfless. So, if the only reason you’re willing to care for yourself is to be a good caregiver, that's good enough. Self care can be very simple. No matter the income level, you can do something whether it’s meditating in the bathroom, walking around the block, going to a ball game with friends, or spending an hour at the spa. One woman Denholm interviewed for her book is from Argentina. Each year, she visits her family there for a month while her husband is well cared for at home. She tells friends and family that if her husband dies while she’s away, not to call her. “Just put him on ice and I’ll take care of it when I get home." And she's serious! In order to protect her own health, she’s willing to risk criticism from everybody, and I commend her for that. She also knows she's not going to change the fact that he'll die. She believes, as many people do, that if the sick person wants you with them at the end, they'll wait to die. Caregivers have to do what's right for them, as long as they have ensured the safety and care of the patient. 

Self-care can take many forms, such as managing your emotions and stopping energy drains which will be the subject of another blog, and is discussed in detail in the Handbook. 

Read another caregiving story, and read Diana's book, The Caregiving Wife's Handbook." Thanks to Diana for the interview, and to Elana Fiske of Hunter House Publishers for connecting us.

Privacy about depression on Facebook: Even to online "friends"

Alex is one of the young people whose experiences with psychiatric medication Kaitlin Bell Barnett chronicles in her recent book, Dosed: The Medication Generation Grows Up.

Alex, who began taking antidepressants for anxiety, depression and obsessive-compulsive disorder at age 10, had been a loner since childhood: He kept to himself and was happy about it. But as he grew older, he had periods of extreme anxiety and depression during which he felt an uncharacteristic need to reach out to others.

While in his early 20s, Alex quit his medications, frustrated that he had tried a series of different drugs without seeing his symptoms disappear. A few weeks after stopping the drugs, he fell into a deep depression. Alex had previously experienced depressive episodes during which he was seriously suicidal, but this time he didn't actually want to kill himself - he was merely having thoughts of hopelessness. Unfortunately for him, he decided to obliquely share these thoughts of hopelessness on his Facebook wall, leading to a harrowing experience:

  

Someone he'd met through one of the social network's groups interpreted the post as a suicide threat and somehow notified the public safety department at Alex's college, which in turn sent the police to Alex's house.  The police took him to the emergency room, where, although Alex insisted vehemently he wasn't suicidal, staff judged him a threat to himself and had him involuntarily committed to a psychiatric ward for two days.  He considered the experience ironic, given his attempt to be hospitalized at the same unit four years earlier, when they told him they wouldn't admit him unless he had a plan to kill himself. The take-home lesson is:  he is far, far more careful about what he discloses, even to online "friends."  

Had Alex actually been suicidal, his Facebook friend's actions might have saved his life. But as it was, it caused Alex a great deal of unnecessary trouble and anguish.

The episode highlights the complications of sharing dark thoughts and musings over social networks - and raises the difficult question of what the networks and the people on them should do to help or intervene. 

Kaitlin's Advice:  If you're feeling like you really need support and want to reach out to people over social networks, you might want to consider contacting people individually through a chat or a message, so there's an opportunity for back-and-forth communication and your words don't get misconstrued. Facebook users should know that if they post an update with suicidal content, anyone who can view their updates can report it to the social network's administrators. If someone does report suicidal content, the user who posted it will receive an email with a link to begin a confidential chat with a suicide prevention hotline worker. Facebook also has a resource center giving advice about how to help someone who has posted a suicidal comment. 

Mental health blogger Natasha Tracy has a great post with advice about how to respond if someone posts a suicide threat on Facebook. 

Read another anti-depressant medication adherence story.  Thanks to Kaitlin for this excerpt from her book, Dosed:  The Medication Generation Grows Up, and to Bethany Sales of Newman Communications for connecting us.

Overtreatment for heart conditions: You were right, Dr. Lown

A box of Florida oranges arrived on retired cardiologist Bernard Lown's doorstep last winter from a patient he had seen more than 40 years earlier.  The man had come to him for a second opinion after another doctor had recommended valve surgery, he recalls.  Dr. Lown told him it wasn't necessary, that it would be decades before he needed it.  In fact, it would be four.  The oranges came with a message:  you were right.

Back in the early 1970s, Dr. Lown and his colleagues had realized that blockages in heart arteries weren't the ticking time bombs that people perceived them to be.  Indeed, they could be treated effectively with medication, a healthy diet, and exercise.  They found that advanced testing and the surgery that frequently followed were rarely necessary, and published their findings in the New England Journal of Medicine in 1981.  Accordingly, his medical practice had stopped referring patients with significant but stable heart disease for imaging tests.  

Dr. Lown is the grandfather of a movement in medicine today to spotlight and reduce overtreatment.  In April, nine medical specialty groups, including the American College of Cardiology, published lists of tests or treatments that doctors should avoid, in a campaign called Choosing Wisely, launched with support from the American Board of Internal Medicine Foundation. 

Read one of Dr. Lown's stories on overtreatment.  Thanks to Chelsea Conoboy, from whose article of July 29 in the Boston Globe Magazine this is adapted.  

Advance planning for the end of life: My answer to healing

Tory Zellick's story:

When we were much closer to the end of my mother's life, unbeknownst to us, she developed hypercalcemia [raised calcium level in the blood].  I was 24 at the time, and had already been her care partner for six years.  We'd started butting heads, as mothers and daughters do.  

Because of her shift in awareness, we started searching for a brain tumor.  Nothing was found to explain the change in her cognitive function.  To restore family balance, Dad whisked Mom away for a one one vacation.  While on the trip to Mexico, she got a urinary tract infection.  The kidney and liver can only process so much, so the calcium built up even more in her blood.  Her hallucinations continued.

We went to the Emergency Room of our hospital in Chico, California.  When admitted through the Emergency Room, you tend to deal with a hospitalist, not a physician who is familiar with one's illness/ailment.  We called her oncologist, who turned out to be out of town for the week.  But because we'd had the conversations with my mother, we knew she did NOT want cardiopulmonary resuscitation or a feeding tube.  We'd had the talk about the durable power of attorney.  She'd explained everything that she did and didn't want.  We'd contacted the lawyer, and had Do Not Resuscitate (DNR) and Do Not Intubate (DNI) orders already written.  We had a full understanding of what she felt was a good quality of life.  

As it became clear that end of life decisions needed to be made, we felt comfortable that we were fully prepared as a family.  We had what I call our "care team":  physicians, insurance broker, attorney, etc.  Being organized allowed me to have the information I needed at my fingertips to make appropriate decisions, and call the correct people when I needed certain questions answered, tests run, or scans compared.  

After comparing scans of Mom's liver over the past six-week period, it was apparent that the cancer had metastasized to her soft tissue, and that the hypercalcemia would be a quick and painless way for her to exit this life.  Quality of life was something she valued much more than time itself.   As a family, we decided to take her home and allow her to pass in the home she had raised her children in, as she had requested when we had the discussions about end-of-life when she was relatively healthy. 

This kind of situation can be overwhelming.  Your incredible, functioning brain will quickly begin to misfire.  But if you have everything organized, have had the difficult conversations about end-of-life and have the appropriate documents in order, it's much easier to make the decision best suited to the patient.

Years earlier, we'd been able to have the conversations about the end of life because my grandfather had been grappling with renal cancer for as long as I could remember.  My other grandfather had died when I was five, so we'd always talked openly about death. 

We weren't raised in any Western religion, but those who have some spirituality should contact their reverend, priest, etc., if they're looking for a guide to have such conversations.  We looked deep in ourselves to know what to do.  We sat in the living room, and discussed each of our wishes.  Our parents presented it to us that we should all know what everyone's wishes were.  An 18-year-old could get into a car accident and suffer a traumatic brain injury; this talk wasn't just for the oldest or sickest person in the family.  By incorporating the whole family and not just one ill individual, it helps by not isolating the patient about their own personal mortality.  It's not pointing the finger at any one person; it's something that everyone should do.

After my mother passed away, I created a workbook full of helpful tips and worksheets to help any caregiver avoid any unnecessary suffering.  It's my answer to healing, to help other people.  Either way, this journey will define you, when you're faced with a disease like this.

Tory's book, The Medical Day Planner: The Guide to Help Navigate the Medical Maze, provides insight and guidance to patients and their families and caregivers.  It's available at Barnes and Noble and Amazon.com.  Check out her website:  AllThingsCaregiver, and read another caregiver's story.

Thanks to Claudia Schou of Media Boutique for connecting us.

The Caregiving Wife: To blaze my own trail

Dr. Diana Denholm's story:

I'd watched my mother be a caregiver for many years for my father, watching him decline, and not being able to do anything about it.  I saw it as a daughter myself, sometimes critically, because you can't get caregiving into your head until you yourself do it--it's such a huge difference.  And caregiving for a spouse is unlike any other caregiving situation.

When I married, I got the unfortunate opportunity to see it through my own eyes--the person I’m in love with, watching him die.  Shortly after he proposed, my husband got colon cancer, which he survived. Then he developed Congestive Heart Failure. Since he had an artificial valve put in at age 40, you could hear his heartbeat.  With CHF, he then got Cheyne-Stokes syndrome, so at night, I could hear his heart stop for 25 seconds, and then start up like a train leaving the station, building to full speed, then slowing down to a stop again for another 25 seconds—all night long.  And soon, without realizing it, I became my mother--the same challenges.

We moved to California for a heart transplant.  Then the next round of disasters started, as the anti-rejection drugs tend to destroy your body.  Among a laundry list of illnesses, he developed skin cancer, depression, kidney failure, and Parkinson's Disease.  He had extensive dialysis, falls, bleeding out - one trauma after another.  

After several years on dialysis, he reached the point where he'd had enough.  Stopping the dialysis, he died five days later.  Even with my background as a medical psychotherapist, I was never really prepared for caregiving.  I had to blaze my own trail, through eleven and a half years, with nowhere to turn for answers.  There wasn't a place to find a road map to get through this with any semblance of sanity or semblance of self.

Caregivers commit suicide, become the objects of abuse, or even become abusers themselves.  None of that needs to happen.  My book is a wellspring of hope so you can make your life work even then.  Marriages disintegrate when somebody is ill; a lot of damage occurs to the relationship.  In the book you learn effective communication, specific tools and procedures, and very collaborative ways to work through all your challenges with compassion for yourself and for each other. You can reclaim the loving relationship you thought you lost forever.

Dr. Denholm's Advice for caregivers:

Establish expectations, and get everyone involved to be on the same page, e.g., what you're willing to do and not do, about legal and financial matters, visitors, sleep, sex, intimacy.  There are resources, and my book, The Caregiving Wife's Handbook, available at my website.  

Read another caregiver's story.  Thanks to Diana Denholm, PhD, LMHC for the interview, and to Elana Fiske of Hunter House Publishers for connecting us.     

Diabetes buddies: Voices of experience and hope

Mary's diabetes story:

     I've been involved with the Outreach Program for JDRF (formerly known as the Juvenile Diabetes Research Foundation) for about 10 years.   A family lives near me in a MetroWest suburb of Mass. and I visited them with one of our Bags of Hope, a care package designed to encourage children and their adult caregivers, help ease the transition of a new diagnosis of type 1 diabetes, and introduce the family to JDRF.  You go to the home and bring the bag with you and meet the child who was just diagnosed, and their parents.  The bag has a lot of information about diabetes, Rufus the Bear with Diabetes, a blood glucose meter…

     This family had a son, Joe, who was six.  My son Nick was diagnosed with diabetes at age 8.  Nick, who was 12 then, was just there with me.  There wasn't a lot of connection right then, but the young boy later wrote Nick a thank you note.  It meant a lot for Nick to get that.  Nick had just gone onto an insulin pump at age 11 or 12, and Joe was interested in learning about the pump.  So Nick went to visit again and showed Joe his pump; that interaction fostered more of a connection between them.

     When Joe got older, he went to Camp Joslin (now part of the Barton Center for Diabetes Education), where Nick was a counselor.  Nick had been on his high school football team, which Joe, who was in middle school by then, was very interested in.  They had this history in common, so they talked, and Nick told him about hiding his glucose tablets in those tight football pants.  

     When Nick was in college, he met another boy in our town, Mike, who'd recently been diagnosed with diabetes, who was about the same age as Joe.  The mothers arranged for Joe and Mike to go out for lunch with Nick, to ask about drinking and drugs and whatever.  That happened several times.  So the buddying about diabetes rippled out from that.  

     I ran into Joe two weeks ago.  He's now a senior in high school.   Joe is interested in delivering Bags of Hope to newly diagnosed children and in becoming a diabetes mentor for JDRF and being that voice of experience.  It's all circled around.

     The boys' mothers saw Nick's mentoring as a source of support, encouragement, and chance to see an older boy who was doing well living with Type 1 Diabetes.  They both also mentioned that for them as mothers it was comforting and helpful to see an older boy negotiating through the teen years and college well.

     That circled around another way, too.  Joe's mother is a captain of a large Walk Team in Boston [for the annual Walk to Cure Diabetes, JDRF's biggest fund-raising event].  That all started from that first Bag of Hope delivery.  As people get more comfortable with the disease and how to manage it, they get more involved with JDRF and its fund-raising side.  Building engagement like that is a process that takes some time.  For some families, it’s immediate; for others it takes a year or two; with others, it doesn't happen at all.  

     Read another story about how buddies help others with diabetes, and see the JDRF's New England Chapter - Bay State Branch website.  Thanks to Lauren Shields of JDRF for arranging the interview with Mary.

All-Inclusive Care for the Elderly: I was my Mom's PACE Program

Roberta Robinson's story:

I grew up in West Roxbury, Mass., married, had children and relocated to Pelham, New Hampshire.  I was a Paralegal and commuted to Boston for 11 years.

Meanwhile my mother was aging in place, and as her health began to fail her needs began to increase so I managed her home care from 60 miles away, making frequent trips to West Roxbury to make sure everything was going smoothly and that she was getting what she needed.   One day I received an internal message that I should keep myself fluid and that I would be out of wherever I was and into her house. 

And that was exactly what happened.

I found it necessary to move back to West Roxbury, however, not yet into her home as I wanted her to stay as independent as possible.  Then it happened….in one week, we had four emergencies…...the last finding her upside down on the couch with her feet on the back of the couch and her head hanging to the floor. It was then apparent that I needed to take the next step and move in with her.  

She was in her late 80’s and got chilled easily and kept the house like a sauna.  I was in my menopausal state and was melting so I became the cellar dweller.  

At this time, I had a full-time job with City of Boston Commission on the Affairs of the Elderly. My mother was, apparently, in her death process in the West Roxbury area (who knew?  There was no one to guide me through this process) and my daughter was in her marriage process in New Hampshire.  I was so stressed I thought I would pass before my mother did.  It was a slow, subtle process of about 5 years.  Every year she had an incident which brought her to the hospital, rehab and then home.  The first year I was advised by the case manager at the hospital that it was the beginning of the end and so I was on my guard….for four more years.  It was the 5^th year that she never made it home.  I called her the Energizer Bunny.

At the end, it was like a switch had been flipped; she was incontinent, and couldn't care for herself. I had to clean up -day and night and then go to work the next day.  I was doing it all.

There's such a burden to caregiving!  No one knows what it's like until they’ve done it themselves.  Kind of like walking a mile in an Indian’s shoes…as the expression goes.

I had aides (certified nursing assistants) to help - I called them my angels.  I cooked for them all, and gave them gold for Christmas. 

 I so appreciated them and couldn’t have done it without them!

My mother had Diabetes.  She was a little Italian Mom.  I'd cook healthy meals, and then she'd add more starch to everything, which, in turn, caused her sugar level to skyrocket.  She wanted to stay home; that was her biggest desire.  She had Macular Degeneration [a type of vision loss], Congestive Heart Failure, Emphysema  [Chronic Obstructive Pulmonary (lung) Disease], Spinal Stenosis [abnormal narrowing of the spinal canal], Osteoporosis [reduced bone mineral density], and Frozen Shoulder [bone]. 

The world of Elder Services is an incredible maze.  I was trying to figure out what was going one with her health, trying to educate myself on services that were available and trying to get the best services for her that I could get.  There was not one person to outline this information for me and I felt like I was in a bumper car, getting bashed around.

Roberta's Advice for seniors in poor health: Coordinate their health care and plug them into life.  Get them connected to a community, whether it's faith-based, at the adult day health center, the housing community, or something else; it doesn't matter which one.   We need each other! 

Isolation is the worst enemy for seniors.  

Roberta Robinson is now the Director for Geriatric Outreach and Marketing for the PACE program (Program for All Inclusive Care for the Elderly), and the Geriatric Division at Cambridge Health Alliance. 

She is a patient advocate in the best sense of the word.

Read a story about a compassionate home care provider, and learn about the PACE program.  Thanks to Roberta for sharing her story.

A patient advocate: This is her partner

Dr. Suzanne Koven's story:

     For many years I've provided primary care for two women in their 70s who have lived together for decades.  Perhaps because of the era in which they came of age, they'd never identified themselves to me as a couple, though it seemed clear that they were.  They finished each other's sentences, took notes at each other's medical visits, and, when I called to discuss one of their test results, both got on the phone.

     I sometimes wonder whether I should have encouraged them to be more open with me about the nature of their relationship, but I sensed this was not what they wanted. I'm still not sure I was right.

     Once, one of the women became critically ill and required months of hospitalization outside of Boston.  The other was at her bedside all day, every day.  The doctor on the case called periodically to update me - progress was at times discouraging - and her companion also phoned regularly.  She always left messages that began by identifying herself as the patient's "roommate" or 'friend."  

     Eventually, because of excellent medical care and, no doubt, the "friend's" loving attentiveness, the patient recovered and was able to return home.  When I got the call with this news, the message was slightly different:  "This is her partner...", it began.

     A small word, a subtle shift, and yet I couldn't help but read volumes into it.  I imagined the woman, after months by her partner's side, after decades of denying their relationship, finally saying to herself, "Dammit, I've earned the right."

     Of course I don't know for sure if that's what she said to herself.  But I do know this:  I received dozens of phone messages every week, thousands very year - and I can't remember one that moved me more.

     Read another story about the healing power of love in a glamorous younger couple.  Thanks to Dr. Koven for this story, reprinted from today's G section of the Boston Globe.

Out of the closet: Second opinions on Radiology tests

Dr. Greg Goldstein's story:

One of my patients, a relatively young woman I'll call Lauren, had had pain in her calf, with swelling, so she went to the Emergency Room to get an ultrasound.  They told her they saw a clot in the scan, so she'd need a few days of hospitalization, to be on blood thinners ["anti-coagulants"].  That treatment isn't benign, as there's a risk of bleeding as a side effect.  She called me and asked me to look at the ultrasound.  I looked, and didn't see a clot, so I suggested she have another ultrasound to confirm it.  She went to a vascular surgeon, who repeated the ultrasound, and also found nothing there.  She could've been put on Warfarin for a period of time, maybe indefinitely, so we prevented that.  That was good for her, and was also good from a public health perspective, as the money for the unneeded anti-coagulant drug was saved.

As my own Radiology practice grew, I learned about the importance of communication between the primary care doctor and the radiologist, and providing a high level of service.  I thought, Why shouldn't radiologists talk to patients?  Why be only behind the scenes, when we're in a unique position seeing doctors and patients from all specialties?  We're coming out of the closet.  That's important because patients are getting very frustrated, saying, "My doctor didn't have time to go over the film with me, and didn't explain things clearly enough to me."  

Coming up with a medical diagnosis is like putting a complicated puzzle together.  The radiology exams are a critical piece of that puzzle - its "centerpiece."  The radiologist's unique perspective puts them in the valuable position of knowing about each specialty and can therefore help patients navigate the health care "web'."

See another story of a falsely positive scan, and see Dr. Goldstein's MetisMD website.

Thanks to Dr. Goldstein for the interview.

Recovering from facial disfigurement: We inspire them

Lesia Cartelli’s story:

     A girl from Colorado, I’ll call her Sarah, was in a car, hit by a drunk driver at age 13.  Her father and her twin sister, sitting next to her, were killed in the accident.  She had incredible facial trauma, with one side of her face paralyzed, so that only half her face could smile.  She spent a week with us at Angel Faces, and we helped her with a lot of role playing on staring and teasing, art therapy, and goal setting.  She went back and started speaking to all the drunk driving classes.  She was 15 at the time, and had aligned with really good, strong people, so she was able to take her trauma and make a real difference.  Now she has just graduated from high school.  For her, it wasn’t just about having her face disfigured by trauma, as she has lost her father and sister.  But she stopped being buried in grief.  

     Sarah told us all about this at Through Your Voice, which is one of the programs within Angel Faces.  Girls come back here and do a presentation about what they’ve done with their trauma to try to change their world.  The girls take their trauma and make something beautiful out of it.  So we can say to the others after a horrible accident, What are you going to do about it?  

     At Angel Faces, we’re in our tenth year.  I don’t have children of my own, but I have 200 teenage girls.  We create a community here, so the girls mentor younger girls.  They go through our program, then go out and live for a couple of years, go to college, get their feet into the real world, embrace their hard knocks, and then they can volunteer as a part of our team.

     I started Angel Faces after my accident.  I was burned as a child in a natural gas explosion.  After the hospital, where you’re in this loving womb of treatment, to go into the real world, with such grief, scarring, and trauma, and then, maybe you only get to see a therapist for 45 minutes a week, it’s really not enough!  I’d been at a camp for burn-injured children, which, I realized, was failing to address the true needs the children had, to get them through their injury with knowledge and grace, not just to entertain them with camp-like games.  

     I saw that if I got the girls in a healing setting, and gave them a path to express themselves and learn about their trauma, that was what was needed.  They start to put together their story to help people, and help girls just released from the hospital, who think “my life is over.”  We inspire them; they realize all is not lost; they can be a teacher to so many.

See the Angel Faces website.  Thanks to Lesia for the interview, and to Rick Stevens of Ascot Media Group for connecting us. 

Read Chapter 11, "Living for Others," for other patient advocate heroes in Ken Farbstein's book, Getting Your Best Health Care:  Real-World Stories for Patient Empowerment [e-book is available here].

An Actos Experience: He wants his pound of flesh back

Terrence Allen is a midde-aged warehouse worker in Attica, New York, who took Actos for his diabetes.   He developed bladder cancer after taking Actos for five years.  “If somebody had told me I could get cancer from Actos, I never would have taken it,” he told Bloomberg News. “There were other products out there that could have helped treat my diabetes without putting me through all of this.”

He said in December that he has had two surgeries to remove cancerous tissue from his bladder and may be facing another after the Christmas holiday.

“To some degree, I would like my pound of flesh from the company,” he said.

Doctors often prescribe Actos to type 2 diabetes patients who need to manage their blood sugar. For that distinct task, Actos does what it is supposed to do.  But for long-term users, the drug can cause extreme and serious side effects to develop — including the potential development of bladder cancer and heart attack.

More than 10 million people have taken Actos for help with their diabetes, but there is no such thing as a typical user of Actos. That's because drugs affect people in different ways, and few people have the same medical experience.

For some Actos users, the early symptoms of bladder cancer may go unnoticed. One side effect of Actos that can indicate a more serious problem is an increased need to urinate. But that symptom, as we know, also comes just from living. It comes along with aging.  

Many times, Actos patients do not associate the taking of their diabetes drug with having to go to the bathroom more often.  They WILL take notice, though, if/when they experience pain during urination or see blood in their urine. That's when most people know that it's time to call the doctor and find out what's really going on.  (And the sooner the better. Once bladder cancer has progressed to stage 3, there is only a 50% chance of recovery.)  Once patients experience one of these symptoms, they should make an appointment with their primary care physician — often the doctor that originally prescribed the medication — for a complete medical history.  From there, the doctor can give a referral to see a urologist for tests.    

The most common theme among people who have serious Actos side effects is surprise. How, they ask, is a drug that is supposed to help me live with diabetes giving me cancer?  Shock and anger are common emotions when people learn that their cancer could have been caused by a medication that their trusted physician prescribed to them — often years earlier.

Some patients begin taking Actos, hear about its serious risks, quickly contact their physician to change medication and save themselves from future problems.  Many patients, however, only hear about the risks of Actos years later, after they have been diagnosed with bladder cancer.

About 10,000 patients are expected to sue Actos' manufacturer.   

Read a bladder cancer survivor's story, and see the extensive DrugWatch website.  

This was written by Alanna Ritchie, a writer for Drugwatch.com. An English major, she is an accomplished technical and creative writer. Thanks to Alanna and John LaGrace for this story.  Some quotations were reported by TheSandersFirm.com and Bloomberg News.

Ratings of doctors: Five stars for Consumer Reports

When I choose a car, I do my homework carefully, as my family's lives will depend on the decision.  I'm easily able to find the ratings of thousands of consumers, on a dozen dimensions, via Consumer Reports' well-known five-star rating system.  

However, I've been unable to do my due diligence, and have been frustrated, in making a different high-stakes decision, that of helping my mother find a doctor in Atlanta.  Each of several rating organizations posts only a handful of consumers' ratings, if any, of a given physician.   

Maybe there's hope now, at least for consumers of medical services in Massachusetts.  In today's Boston Globe, Chelsea Conaboy described a new resource for patients in Massachusetts, courtesy of Consumer Reports and Massachusetts Health Quality Partners.  Beginning today, they're posting ratings of almost 500 physician practices that each had at least 50 patient surveys.  

MHQP has been posting physician ratings for several years.  Barbra Rabson, the head of MHQP, said the average physician practice has improved its ratings since 2009.  Such reporting is a powerful stimulus toward improvement.

Kudos to Consumer Reports!

And, can we fantasize that someday we'll have pricing information, too?

Read the chapter on choosing a doctor in Getting Your Best Health Care:  Real-World Stories for Patient Empowerment.

Peer support for living with diabetes: She was my second brain

Part 1 of Jo Treitman's story:

I was diagnosed eight years ago, at the age of 14, with Type 1 diabetes.  I had a pretty easy time settling into life as a Type 1 diabetic in high school, as my parents were very helpful, and I was very responsible.  But in leaving for college, it was a really difficult transition.  My health definitely took a turn for the worse.  I didn't have any serious complications but I was definitely headed in that direction if I kept it up.

One of my main issues was that I wasn't remembering that I was a diabetic. Back in high school, I lived in my parents' house, where my being diabetic was normal. When I was with new friends who didn’t diabetes or know much about it, I'd eat the way they did, and do what they did. This obviously took a toll on my health.

The summer after my sophomore year, I decided to work as a counselor at a summer camp for children with diabetes.  There, diabetes was normal for the first time in my life and it was a really good feeling.  I made some great friends there and my numbers were fantastic since we all were taking insulin at meals, and checking our blood sugars all the time.  It was three weeks of paradise!

Unfortunately, when I went back to school, I just didn't keep it up. A couple years later, in my senior year, I was at a table with friends and I met Natalie, who was also Type 1.  We hit it off immediately, and asked each other about the food we ate, exercise, etc.  We both wanted to gain better control of our diabetes, and we decided to do it together, so we  become “diabesties”.  

We instantly started texting each other to get “back on course”.  Every time we checked our blood sugar, we'd text each other the result.  It didn’t matter what the number was because the more times you check, the more data you have and diabetes is one big, difficult, ever-changing math problem. That reminder, from a Type 1 diabetic, was pure support. My relationship was different with her than it had been with my parents because I couldn't get frustrated with her for calling me out on anything since she was diabetic too!  She was the one I'd call when I needed a second opinion, which happened a lot, as there's a lot to pay attention to and a lot to tinker with.  She was my second brain. It was nice to have two brains coming together on this, because my mind would always be spinning with questions like:  If I bike really hard, will my blood sugar go high or low?  If I have fries with ketchup, do I need to take more insulin?  We'd text each other about those things in addition to our blood sugar levels.

A few days after meeting Natalie, we connected with a classmate of mine, Sam, who was also diabetic.  Sam immediately joined in and the three of us texted constantly.  We'd wake up to text messages, and would eat a lot of meals together. We even began to notice trends in each other, since diabetes is different in different people. Certain foods may work for some and not for others. Even certain exercises may cause one person to have a low blood sugar and another person’s levels to rise. 

When your blood sugars are low, you feel shaky and really out of it.  Sometimes if I was studying late, and Natalie was around, she would bring me a juice box at 2 am.  Those lows are really annoying, so that meant a lot.  Having someone by your side who knows how it can be was pretty awesome.  

The three of us went about texting each other, and realized we wanted every single person living with diabetes we knew to know about this because it was so unbelievable, and we felt so much healthier.  I was with Sam and Natalie, sitting in a room, when we made the Facebook group Diabesties and invited every single person living with diabetes that we knew.

Read a story about support for diabetes in the e-book, Getting Your Best Health Care:  Real-World Stories for Patient Empowerment, and see the Diabesties Facebook group.  Thanks to Jo for the interview. 

Non-adherence to psychiatric medications: They are often curious

This excerpt is from a chapter in the book Dosed: The Medication Generation Grows Up that deals with teenagers’ “rebellions” against their psychiatric medications. People of all ages sometimes fail to take their meds in the manner their doctors have prescribed, but young people with psychiatric conditions are especially likely to experiment with what doctors call “non-adherence" to their prescriptions. Because drugs for psychiatric disorders change moods, behavior and even personality, and because young people are in such a state of flux, constantly growing, developing and changing, children and teens are often curious to see whether they still need their medications or what they would be like without them. Even a few months in an altered state can seem like an eternity when you’re young.

But quitting psychiatric medications rapidly and without a doctor’s supervision can have serious consequences, either in the form of withdrawal symptoms, relapses, or new symptoms cropping up. This young woman, Elizabeth, began taking Prozac and Ritalin at the beginning of ninth grade and let her prescription for Prozac run out a year later because she had trouble gauging whether the antidepressant was doing anything for her depression symptoms.

Although Elizabeth told her mother during the fall of tenth grade that she no longer wanted to take Prozac, she blanched at the prospect of confessing to her psychiatrist.  The regular fifteen-minute med-check appointments were agonizing enough.  though she had made more friends during ninth and tenth grade, becoming more socially adroit, once she entered a therapist or psychiatrist's office she'd just stare at the books and knickknacks and clam up completely.  She felt like she couldn't force words out of her mouth even if she'd wanted to.  Now embarrassed at having failed to follow the psychiatrist's prescription and unable to explain why, even to herself, she wanted to open up even less.  If this was  rebellion against anything  against her medication, against psychiatry, against her parents, against who-knows-what - it wasn't a rebellion she wanted to acknowledge, let alone be forced to discuss and defend.  The prospect of telling the psychiatrist was so daunting, in fact, that she threatened her mother with ditching the Ritalin, too, unless her mom found her a new doctor.  As usual, her mother capitulated.  When Liz saw the new doctor, she casually mentioned she'd previously taken Prozac, but that she was fine without it.

Liz wasn't necessarily rejecting antidepressants for good when she let them run out during the fall of tenth grade, but as time went on she simply didn't seek a refill, even as she bean to sink into a deep depression.  Around the same time, she befriended a circle of classmates who, even more than her pals at camp, thrived on interpersonal drama and embraced their identity as "fucked-up kids."  Several of them had taken to cutting themselves in secret, which, as Liz gleaned, helped put their emotional pain into something tangible.  In theory, she found the practice disturbing, but a few months after she went off Prozac, she took to cutting herself occasionally, too.  It turned out to be an effective way of calming herself.

So-called "cutting," otherwise variously referred to ask self-injury, self-harm, and self-mutilation, was by no means a new phenomenon in the 1990s, although it was undergoing increasing scrutiny:  Johnny Depp and Princess Diana had both admitted to self-injury, a psychotherapist published a young adult novel about the subject called The Luckiest Girl in the World, and the New York Times Magazine ran a lengthy article on the topic in 1997.  The article profiled a girl who had begun cutting herself, been treated with Prozac for depression and improved, but had gone off the medication after a few months and resumed the practice.

Liz didn't cut frequently, just when the tension built up to a point she couldn't bear.  She was careful to cut only when it was cold enough to wear long-sleeved shirts to cover the wounds.  But her despair during  this time, in tenth and eleventh grad, wasn't unrelenting  At times when she felt more cheerful, she couldn't remember quite how it felt to be depressed, but nevertheless felt a twinge, as though her past unhappiness were calling her back.  "I realized I still want to be depressed," sh wrote in a diary entry from her junior year.  "Like if you are, it proves you're a real person and if I' always happy, it means I don't really feel things.  Anyway I guess I romanticize depression.  Which is funny, because I don't enjoy it when I am. More like the idea of it."

Only in retrospect, many years later, did it occur to Elizabeth that quitting Prozac may have played a role in the urges she developed a couple of months later to begin cutting herself. But why had things come to such a pass?

There are certainly advantages to letting teenagers have a say in their care so that when they leave home, they are prepared to cope with any problems that emerge. Yet, Elizabeth felt that her mother hadn’t set enough boundaries or provided enough guidance, making Elizabeth responsible for her own refills and allowing her to stop seeing psychiatrists whenever she pleased.

Kaitlin Bell Barnett's Advice:  A more consistent and firm attitude from both her mother and her prescribing doctor, Elizabeth later concluded, would have helped stabilize her treatment and might even have prevented a relapse of her depression and the self-injurious behaviors that came with it.

Read a patient's drug compliance story on this blog.  Thanks to Kaitlin for this excerpt from her book, Dosed:  The Medication Generation Grows Up, and to Bethany Sales of Newman Communications for connecting us.