Family education for coping with mental illness: We just had to do it ourselves

Joyce Burland's story:

     My sister became ill with schizophrenia in 1960, when she was 30, as a mother with 5 young children.  I was a college graduate, and knew my way around research.  But as hard as I tried, I could fathom nothing that was helpful for us.  At that time in America when people became ill with mental illness, the worst outcomes happened.  There was nobody there to counsel or confirm or console, nothing!  It was at the height of the family blaming era.  So the idea that families could teach other families was unheard of.

  

     My sister escaped having her brain skewered with a needle [for a lobotomy], but she went into Freudian therapy, which alienated her from her family almost immediately, as she was very psychotic.   I just watched the whole thing go down the drain, which was tragic!  She rejected her husband  since she had delusions about him.  The kids huddled, and my mother took over as grandmother.  Things were full of tension because of the animosity on my sister’s part.  

     For years and years she was out of touch with all of us in the family, and the kids had to struggle all by themselves.  When Mommy got to be 80, I called the five of them to ask them to come to her birthday, and three of them showed up.  I took them out to lunch.  I was frightened to approach the subject of their Mom’s illness after so many years apart, but I pressed on, asking them,  Do you all know your mother has schizophrenia?  With some relief, they said they knew something was wrong, but no one had ever given them any information or guidance. How could this silence happen in America, where in other medical realms so much progress was being made?

     Then in 1981,my daughter became ill.  There was still no guidance, no compassion, no counsel.  I had to stay up all night with her in the hospital, and at 4 a.m. was obliged to do a psycho-social interview with a resident.  He said she now had schizophrenia because her “infant psychosis” was breaking through.  I looked at him like he’d come from Mars, recognizing instinctively that this was just plain crazy.  It was from my neglect of her, early in her life, he added!  I don’t know when outrage matures and inspires action, but that was one key event that later drove me to write Family-to-Family.

     At that point,  I’d never heard of NAMI [National Alliance for Mental Illness], but I did get a suggestion from a friend and called Dr. [E. Fuller] Torrey, who’d written Surviving Schizophrenia.  He’s a radical activist and wonderful psychiatrist.  When his sister got schizophrenia, he realized how abandoned families were, and how badly the mental health system treated people with mental illness.  He advised, if you make a call to someone and they can’t help you, insist they give you the next lead.  I spent two years on the phone trying to find resources to save my daughter’s life.  She didn’t have any insight into her illness and I did not get a shred of useful professional guidance beyond Dr. Torrey’s kindness. It was just hideous!  

     I began to understand how many people had gone through the same nightmare.  How can this be America?!  There was no professional initiative, no one saying, Oh gosh, we have to educate families because they’re the first responders.  Family caregivers were so forgotten and unheralded and sacrificed.  I’d gotten my PhD in Psychology at age 51 or 52, but psychology had all the wrong answers. 

     I said, This is unacceptable.  If the providers in the field won’t do this, we will have to do it ourselves. I felt like I had a tailwind from my justifiable rage at what we’d gone through as a family, and concern for all the other similar stories I’d heard. And I had absolute faith that family caregivers would be superb teachers.  One psychiatrist complained at a meeting that we were taking over the store.  I said, How can that be when there was no one in the store!  

     In 1991, NAMI-Vermont got a grant for $15,000 from NIMH for family education, but I’d started writing the course even before that.  I trained the first teachers in Vermont, and kept writing later segments of the 12-week course while they were teaching it.  Talk about inspiration and energy behind an idea!  It was so all-consuming, that my husband had to say, I don’t want you to cross the street until you finish the course!

     

     Now, 25 years later, we have hundreds of volunteer family member teachers across the country.  Every teacher has some degree of the same story of isolation, being ignored and disrespected at some point, though in all other illnesses, people are kind and concerned.  It was SO different for people with mental illness.  By then, I’d seen 20 years of the burden on my own family, the weight of continual stress on my mother and father, the impact on their finances and their dreams of a happy family future.

     

So this is the story of many Americans who refused to accept the rejection and discrimination they faced from the psychiatric community, who found the courage and resolve to turn the prevailing myth of family dysfunction on its head and forge a lasting opportunity for family caregivers to learn how to manage effectively and regain balance in their lives.     

     Moreover, we didn’t stop with Family-to-Family.  NAMI now has the Provider Education Course which I wrote in 1996 , where a team of family members and individuals with mental illness go into mental health agencies and talk to providers about the realities of mental illness.  I also wrote a  program to help teachers recognize early onset mental illness in children.  In fact, NAMI now has ten free peer education and support programs, all directed by family members and people with the lived experience of mental illness.

     Helping families in crisis, giving them something to use while they’re going through the demanding and mystifying elements of mental breakdown, is priceless.  We help them see their stricken loved one as a hero rather than as a lost cause.  Family members who take the course say it gives them more understanding and compassion and concern, and an awareness of the heroism it takes to live with these illnesses.  All that improves the relationships in the family.

     This program also ends up being enormously healing for the teachers, using the pain they have lived through to be helpful for other people.  That’s the last stage of coming through trauma:  giving it meaning and significance.    We’ve never lacked for teachers.  Everywhere I went there were 20 people saying, I want to teach this.  It has made for me a wonderful kind of missionary life.  

     I just had to light a candle and go forward, since it was all blackness!  The families responded.  You have to give a huge vote of appreciation to the families that keep this going.  That’s the miracle here, that people said, I’ll pick this up and do it.  I don’t know how many organizations like NAMI there are, for which people would go through the demanding training for teachers, give up 12 weeknights to teach the course, and turn in their evaluations.  NAMI members are so dedicated, so ready to help others facing the trauma of mental illness.

       

Ken’s Advice: NAMI’s Family to Family Education Program  has helped more than 300,000 family members, for free.  Recommend it strongly to your friends who have a mentally ill family member.

Read a story about a very different patient education class.

A Patient Family Advisory Council’s reduction of waiting room anxiety: I think about who’s coming after me

Mal’s story on the Patient/Family Advisory Council:

I’m the Co-Chair of a Patient/Family Advisory Council (PFAC) at Beth Israel Deaconess Medical Center in Boston.  

Several of us on the PFAC who’d been through the surgical experience at BI, in the waiting room as a patient and as a family member, found it was not a very comforting or personal experience, but was rather stressful.  One of our projects was making that experience less stressful for the loved ones waiting.  A doctor and an I.T. [Information Technology] staff member came to the PFAC and asked for our input.  Several of us shared how impersonal it was.  It was an open area, at the main entrance to the hospital.  It created extra stress with all the people coming and going constantly.  

Now there’s a new waiting area that was created, away from the main entrance, that also has a newer technology of communicating to people where their family member is in terms of the surgical process.  It’s an electronic board, so I can see, for example, my spouse is in Surgery, or, they’re in Recovery.  They give each patient a special code on the screen, so it’s HIPAA compliant [to protect privacy].  And there’s an actual person to talk to when they want to check in and a person who knows the information about their family member.   

  

In my volunteer work on the Boards of nonprofit organizations, when I feel strongly about something, I jump into it.  I got really great care at the hospital, and I also saw room for improvement.  I think about who’s coming after me.

Read another story about a Patient/Family Advisory Council.

Staff training with patient stories: It’ll fall flat

Caroline Moore’s story:

I’m the Program Leader for Patient and Family Engagement at Beth Israel Deaconess Medical Center.  The Radiology department had just established new goals and their Service Excellence Program Manager was trying to find ways to drive them home to her staff.  She said, “I don’t want to just go into staff meetings and say, ‘Here are our goals.’  It’ll fall flat. I need something more patient-centered, from the lens of the patient to help them understand why that’s important.”

So I sent out a question to 80 of our Patient/Family Advisors.  They’re actively involved as members and consultants on task forces, hospital committees, and boards at every level.  I got back some very poignant quotes.  A blind patient had said, 

“I would like to comment on patients with visual impairment going into an area such as Radiology. Even with a little sight, it can be difficult to know where to stand and who is open next during the registration process. Vague directions such as "gowns are over there", and "go over there when you're done getting dressed" are not helpful.  It is also important for healthcare workers to introduce themselves and tell us what their role is, especially in this day and age when everybody seems to be wearing scrubs.”  They really need to be mindful, since I can’t see.”   I got other quotes about how anxious people are to walk into Radiology if they are going there for a procedure that may reveal cancer or a recurrence of a cancer that had been in remission.  We’re making a training video for the orientation and training of front-line staff in Radiology and hopefully it will be used in other departments.  The blind woman who was a patient will be in it, as it’s really important to personalize the experience.  

In the last year, the Service Excellence Program Manager has been coming to me more and more, saying, “You really have something here, with people who were so vulnerable and are willing to share their stories.”  So she is planning to embed our advisors in more of her meetings.

Ken’s Note:  This is an inexpensive way to make staff training much more vivid and memorable, and to increase patient engagement.

Read about how patient engagement improves outcomes.

Patients' use of care plans: A ten-minute engineering fix

Libby Hoy’s story:

I was brought in as the patient/family advisor for a Lean event, a one-week rapid cycle improvement event addressing the wait times in the outpatient clinic my kids were served in.  I was with the clinicians, nurses, administrators, the assistants who bring you back to the exam room, and the front office staff, so all three of the gears in our company’s emblem were represented on the team.  

We identified some of the deficiencies.  In the middle of the week, a conversation came up about a physician’s frustration with families not following their care plans.  The care plan had made sense, he said, but the family had not called back.  He proposed that the families didn’t really care about their kids.  

I spoke up and said, I’m very invested in this. Sometimes we don’t get the call back either. It’s very frustrating when you can’t get in touch with folks.  Others joined in.

The team realized that in the office’s phone tree, when patients called in, the call was routed to a voice mailbox of nurses and staff members who were no longer with the organization, so our messages were sitting in unchecked mailboxes.

There had been assumptions about miscommunication, with team members thinking that patient education might be needed to emphasize to families the importance of following the care plans.  Instead, there was a ten-minute engineering fix to route the phone calls to the right mailboxes.  That improved follow-up and the continuity of care, etc.  If all of us hadn’t been there, this would have gotten lost in translation.

This is an example of the value of co-design, and representing all the voices in the room, not just the patient’s perspective, but their interaction with clinicians and administrators.  That’s so important.  We’ve worked so hard over the last ten years to get the patient’s voice into the conversation.  The secret is in the interactions together to highlight the opportunities for co-design and improvement.  The pendulum is swinging, but in some ways having just the patient or family’s perspective is of as little use as just having the clinician’s viewpoint.  The interdisciplinary approach is better.

Libby is the founder and CEO of PFCCpartners, based in California.

Read a story of the co-production of medical care.

Planning hospital discharge with the patient: I wanted to watch him another day

Another story from Dr. Maren Batalden:
A few months ago, I treated an elderly gentleman with cancer who was getting chemo, so his immune system was compromised.  He got a urinary infection and ended up in the ICU [intensive care unit] with sepsis, needing specialized attention to support a very low blood pressure.  He got better surprisingly quickly with antibiotics and fluids.  He came to the regular medical unit late the following afternoon where I became the doctor in charge of his care.  I met him the next morning and he told me he felt fine and was ready to go home.  He’d been quite sick, so I wanted to watch him another day, especially because we didn’t yet have the culture results from the bacteria which caused his infection and we didn’t know which antibiotic would be safe for discharge.

I explained my concerns to him. “When will you have the culture results that describe my bacteria?” he asked.  I said tomorrow.  So he asked, “How about if you give me a dose in the hospital of an IV antibiotic that works for 24 hours, give me a prescription that is your best guess about an antibiotic pill that you THINK will treat my infection, let me go home, and call me tomorrow if we need to change the antibiotics. If we need to change it, we’ll change it then.”  I thought it was a great idea!  He said, “Why should I sit in the hospital waiting for lab results?!  If I feel terrible, I’ll come back.”  He did great!  I called him the next morning; the culture results confirmed that his bacteria was sensitive to the antibiotics I had prescribed. He felt well and continued his recovery without complication at home.

It used to be that when it was time to discharge someone, I figured it was largely my decision to make.  Many patients assume the same.  “You’re the expert, doc.  You tell me.”  But I have come to realize that it’s NOT my decision; it’s a shared decision. I understand what the labs and the physical exam are telling me.  But I don’t know really know how the patient feels compared to his or her usual state; I don’t really know what kinds of supports they have or don’t have at home.  Decisions about whether and when to admit a patient to the hospital and whether or when to discharge have to made together. To my surprise this framework has pretty significantly changed my practice.  I find myself keeping people in the hospital for another day or two, when left to my own devices, I might have discharged them earlier, or vice versa.  The best care, I have come to believe, is always “co-produced.”  

Thanks to Dr. Maren Batalden for her story. Read her article in the British Medical Journal on co-production of medical care.

Co-production of diabetes care: Not doing me justice

Dr. Maren Batalden’s story:

In a diabetes group, a woman who was being seen by one my colleagues said to her doctor:  “Why are you so obsessed with this blood sugar number [Hemoglobin A1c]?!  In so many ways I’m so much healthier:  I’m eating better, exercising, losing weight.  I have a job, and I’m not drinking like I was six months ago.  I feel so good, and so empowered and supported by this group.  But my HgbA1C hasn’t moved yet.  I feel like these measures are not actually doing me justice.”  

Hemoglobin A1C is a blood test which measures average blood sugars over a three month period.  Doctors and patients use it to evaluate the degree to which a person’s diabetes has been “in control” in recent months. Ultimately the HbA1c should reflect the positive changes that the woman above is making, but sometimes it takes a while.  We have to be patient with that process.  Sometimes a person with diabetes needs to focus on some more foundational life changes that will eventually be reflected in the blood test, but may take several months to manifest.

Our efforts to measure and improve health outcomes in chronic diseases like diabetes have become “performance measures” for health professionals by which payers evaluate the “quality” of care being provided. In a subtle way, this has confused us about the nature of health professional work.  We’ve come to see numbers like the Hemoglobin A1c as if they are something that health professionals produce.  In fact, of course, numbers like these are co-produced by patients and health professionals working together.  In fact, blood sugar is largely controlled by people with diabetes – not their nurses and doctors and nutritionists. Blood sugar is determined by the everyday decisions of a person with diabetes -- what they eat and how they exercise.  The doctor is a bit player.  The doctor prescribes medication, helps to decide when it’s time to start insulin, or go up on a dose, and does a little teaching.  But most of the learning happens outside of the clinic, in the life of the person with diabetes in relationship with their families, by trial and error.

If they care about health outcomes for their patients, health professionals need to reframe their work.  Health professionals need to ask themselves not “How can I be successful in lowering my patient’s hemoglobin A1C” but rather “How can I be most useful, most helpful, most supportive to the person with diabetes who is already working in whatever way he or she can to be healthy?”

Thanks to Dr. Maren Batalden for her story.  Read Dr. Batalden's article on co-production, mentioned by the Institute for Healthcare Improvement today.

Prostate Talk: To limit the poking and prodding

OK, adult sons, can I have your attention please?   When you were a teenager, your father might have had The Talk with you. Remember how awkward that was for both of you?  Now it’s your turn to stammer out to him some important information, to have A Talk with him, about his prostate and what to do about the damn thing.  June is Men’s Health Month, and with Father’s Day coming up on Sunday, there’s no better time for The Talk.

You can see a short video of advice by Dr. Harry Fisch, a Board-certified urologist at New York Presbyterian Hospital/Weill Medical College of Cornell University, or read excerpts from the interview below.

Q:  What is the best way for men to educate themselves about prostate treatment?

A: 4Kscore.com is a website about the most modern and sophisticated test for the aggressive form of prostate cancer—that’s prostate cancer that can kill you.

A lot of times men are getting prostate biopsies that are unnecessary.  Three out of four men, when they get a biopsy, don’t have cancer.  We want to limit the poking and prodding that men get.  The more sophisticated 4K test can decrease the number of unnecessary biopsies and gauge the risk of having aggressive cancer.  That’s what the 4K score test is all about.

Q:  How would you advise adult sons to talk to their fathers about prostate cancer?

A:  We don’t want denial.  Men are in denial, denial, denial about their health.  Men who are older tend to not want to go to the doctor. and are more reticent to really discuss their health.  Young men can talk to their parents, and say, “Look,  I’m doing it.  It’s my turn to teach you about proper health.”  Young men are more attuned to information.  It’s the Information Age on the Web.  Get that information from the Web. Show it to your father, and your mother too, as well, so they can get as much information as you got.   Make them more savvy.

Thanks to Dr. Fisch, and Mike Bako and Alex Cole of D.S. Simon Media for organizing and producing the interview.  Read another story on prostate cancer decision-making.

Patient-centered care at Planetree: It sounds like the ocean

This is Part 2 of Debi Janway’s story about her mother’s care at Planetree. You can read Part 1 here.

It was a home-like feeling. I was here late in the evening, and my family would come. The waiting room in MedSurg is home-like, with round tables to eat at and relax with nice chairs, on the same floor as my Mom. So you know if the doctor or nurse wants to see you, you’re right there. You can heat up your own food in the kitchen that’s right there. If your family member is allowed to eat the same food while she’s in the hospital that she eats at home, you can cook that food for them.

They did aromatherapy. Mom absolutely loved the lavender they’d put in her room, it was so soothing. It was very quiet. You could hear a pin drop. No one just entered the room; they always knocked first, and asked, Would it be all right to come in? The lab techs would ask, Is this a good time to come in? It wasn’t intrusive. They’d ask, Is there anything else I can do for you? My Mom might say, Yeah, I’d like some more ice water. The lab tech or whoever would get her what she needed. As a Care Partner, we could do that too.

I feel very blessed. Mom is back at home now.

Hospital CEO Susan Stone adds:

We have a program, Lights Out Lavender. We’ll do a back massage for the patient, and ask if they’re ready for bed. Our staff round every hour.

We worked hard to make it quiet at night. For example, we have reminders to make sure the environment is quiet. We did an assessment and realized that the Housekeeping carts were too squeaky. The doors for the patient laundry used to click shut really loudly, so we’ve changed those. Also, we use soothing sound machines if patients like them, to create white noise, which can sound like rain, or the ocean.

Ken’s comment: The healing environment creates tangible results. Patients have high satisfaction, as do physicians and other staff. The environment seems to quicken healing, as patients’ length of stay is significantly shorter than in a comparison unit, according to “A Retrospective Evaluation of the Impact of the Planetree Patient-Centered Model of Care on Inpatient Quality Outcomes," abstracted here. Even so, the hospital has been profitable since 2010, perhaps because so many have heard about the spa-like hospital.

Thanks to Dr. Susan Stone and Debi Janway for sharing their story.

Active surveillance for prostate cancer: The trader won the bet

Mike Steskal, a commodities trader who lives and works just outside Philadelphia, is 55 and was told last summer that he had prostate cancer after his doctor ordered a blood test for flu-like symptoms that happened to include a PSA test.  The PSA test looks for a protein linked to prostate cancers.  His PSA level was slightly elevated, which led to more tests, including a biopsy that showed a Gleason 6 cancer.  

He spent months seeing different doctors, most of whom recommended aggressive treatment because he is so young.  He also researched prostate cancer on the Internet and talked to men who had gone through various treatments.  Finally he chose active surveillance.

As part of the surveillance, he had two more PSA tests.  They came back with levels so low that no one would ever have suspected prostate cancer.  His higher level last summer was probably due to an infection, which can cause PSA levels to rise.  

“It was pure chance” that he got a prostate cancer diagnosis, Mr. Steskal said.  “That’s another thing that went into my decision.”  

Dr. Alan J. Wein, the Chief of Urology at the Perelman School of Medicine, advocates active surveillance for most men with low-risk cancers.  But he emphasizes that they should have a second biopsy within a year, followed by regular biopsies every year or two and regular PSA tests.  

“I tell patients, ‘This is a bet’”, he said. “You are betting that the disease is not going to progress, or if it progresses, you will be able to tell before it progresses to a situation where it less treatable.  You enhance the chances of winning the bet by doing a confirmatory biopsy.”

Ken’s comment:  The false positive PSA test led to a scary misdiagnosis, but Mike was wise to carefully consider the alternative to surgery.  

Thanks to Gina Kolata of the New York Times for the source story on May 24, “The Latest Trend in How to Treat Prostate Cancer:  Don’t.”  Read another story about decision-making on prostate cancer.

Patient-centered care at Planetree: Mom’s first smile

Debi Janway’s story, Part 1:

My mother is very active, 89 years old.  She comes over four days a week in her Thunderbird convertible. 

Recently she had pain in her lower left side, at an 8 or 9 on the ten-point scale.  I’d brought her to the E.R. of our local hospital, but because the pain was so severe, I got her transferred to Planetree’s medical center in Coronado [near San Diego], where I’m an employee.

They put my mother in a private room, and she sighed with relief.  It gave me peace, too.  I was right there with her during the evaluation, included in the conversations, since they knew I was her care advocate.  As a Care Partner, they offered me a tour, showing me where the healing garden was, where the kitchen was, where to get meals, etc.  It was amazing!  That’s routinely available to the Care Partners.  I put my name on the board, giving the information to the nurse about how to reach me and discuss the plan of care.  I had told the nurses I’d like to be in attendance when the physicians were rounding, because my Mom is hard of hearing.  They’d move in closer so she could hear.  The doctors were wonderful in taking care of her.  Even on the weekend when I wasn’t working in the hospital, they called me.

We weren’t even there an hour before the Environmental Services technician came in and offered a warm moist washcloth all rolled up.  Mom asked what she was doing. The answer, “to help you relax, and wash,” with an explanation about Planetree’s way of helping patients heal, brought the first smile I’d seen on my Mom in 15-20 hours!  She said it felt so good, it was amazing!

Susan Stone, RN, PhD, the CEO of Sharp Coronado Hospital, elaborated:

Handing washcloths to patients with aromatherapy twice a day was part of a program developed by Housekeeping to be a partner in the patient’s care.  This has been a cornerstone program for them in helping them change from a hierarchy to a team.  We’d made a commitment back in 2001 to spread the patient-centered model house-wide.  We created a hospital-wide work team to create a Designation Process.  We’ve identified 11 areas of expertise, including a Healing Environment, use of Alternative Therapies, etc.  These are the criteria used for awarding unit-specific Planetree Designations in addition to two Designation with Distinction honors.

As another example, if a patient’s pain is out of control, the patient might ask a housekeeper, Will you pray with me?  They might not ask that of a nurse, but they’d ask it of Housekeeping.  That can be really important for their healing.  Also, they can brush the patient’s hair.  It changes the whole dynamic; the patient understands the housekeeper isn’t just there to clean the room.

Ken’s comment:  The hospital’s patient satisfaction scores on the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) were in the top 5% among U.S. hospitals.  Employee satisfaction rated in the top 2%, earning a Morehead Workplace Award, according to a presentation by the Chief Nursing Officer of Sharp Coronado Hospital. 

Thanks to Susan Stone and Debi Janway for sharing their story.  Look for Part 2 soon.

Knee replacement surgery: There’s some comfort in that

Here's a story from a California-based patient advisor who prefers to remain anonymous:

Two years ago I had a knee replacement.  They had a two-hour class for ten of us having a joint replacement.  They required it as preparation for surgery.  They gave us an overview, and then also tools, for instance a calendar.  They led us through an exercise: Put your surgery date on the calendar, then go ten days back and write down a note to stop your Motrin or other anti-inflammatory meds; and then lay out the future, with your post-op appointment ten days out.  They told us what kind of healing you should see within two weeks.  It was really comprehensive.  

They gave us a cleansing antibacterial to use at home prior to surgery, and demonstrated how you use those and work with those.  The class engaged you to do all you could to keep the risk of infections low.  They were very transparent about infection being the #1 concern, and how they’d support us as patients both before and after we’d go home.  

After the surgery, when I got home and took off the bandages, I had some redness.  They were able to help me through the smart phone.  I sent pictures to the nurse, and she said it wasn’t a problem.  That attention to the level of detail about possible infection was really reassuring.  They’re typically pretty forward-thinking.

I encouraged them to do some research to see the rates of infection before and after.  I found it so valuable, as did everyone in the class with me.  I was clearly on the young side of the class, by about 25 years.  For the 70- and 80-year-olds who were having this done, having a tangible tool like the calendar and having someone there to walk them through this was great!  This generation is often challenged to engage in their own care.  It moved them to do that, because they have the tools and the support to enable that to happen.

There was also something intangible for a group setting like that, with a number of people all going through that together.  With groups of patients, they get confidence from each other; that normalizes the experience.  There’s some comfort in that, that the surgeon is that experienced, but also that it’s routine.  It also normalizes the experience of our being engaged, like the way we all were doing our calendars.

I’m so impressed with the whole clinic and the surgeon, and their emphasis on safety, starting even prior to surgery at the pre-op visit and class.  

Read another story about a class for people with a common medical condition.

Buddy Check 22 Facebook group: Life-saving through crowd-sharing

David Woolery was in the Marine Corps in eastern Afghanistan in 2004 when a bomb exploded under a convoy he was in, injuring some of the men.  He got through that with the help of his fellow Marines, but the return to the U.S. was more unsettling. 

“Out here is every man for himself,” he said.  People back-stabbing.  It’s all me, me, me.”

In 2015, Mr. Woolery started a Buddy Check 22 Facebook group for his unit, which was “a big lifeline” that later expanded to other veterans.  They shared stories of combat, spoke the same language.  Recently, a member dropped a screen shot of a veteran’s suicidal remark into the group’s page and wrote, “Let’s find this guy.”

“The man had said his good-byes and was about to kill himself,” Mr. Woolery said.  But word spread, and eventually people tracked him down and sent help.  It was lifesaving through crowd-sharing.


Why the name “Buddy Check 22?”  To thousands of veterans and active-duty soldiers, the 22nd of every month is a reminder to make a suicide prevention spot-check on former comrades.  A Department of Veterans Affairs study in 2012 said an estimated 22 veterans committed suicide every day in 2010.  While other studies calculated a lower tally, closer to one or two per day, the number 22 has taken on potent symbolism on social media.

Advice to veterans:  Join this group.




Read another suicide prevention story.  Thanks to Christine Hauser of the New York Times for the source article on April 24. 

Interactive Imagery for Irritable Bowel Syndrome: It changed into a bunny rabbit

As the Director of Oncology Intake at Cancer Treatment Centers of America, Dr. Larry Altshuler has been an integrative medicine specialist for 36 years.   Here’s an excerpt from his new book, Doctor, Say What?:  An insider's scoop to getting the best medical care:

Denise is a 32-year-old woman who had severe IBS [Irritable Bowel Syndrome].  Her IBS had been present for 20 years, and she could never go out because she might have a sudden attack of diarrhea at any time.  While exploring her subconscious through the interactive imagery technique, we discovered that some type of fear had started the condition. I had her image her fear, and suddenly she saw a big, black, hairy rat in a cage (this represented that she had “caged” away her fear).  I I told her to imagine opening the cage and letting out the rat (symbolically “releasing her fear”).  When she did, in her mind, she heard the rat say, “Thank you for releasing me.”  I then asked her to see herself hugging the rat (symbolically “embracing the fear”).  When she did, the image of the rat changed into a bunny rabbit and hopped away, and she heard it say, “Thanks.  You don’t need me anymore.”  After that session, Denise never had another episode of IBS, and that was 12 years ago.

Interactive Imagery (also called Active Imagination)…is significantly more powerful than guided imagery…Instead of creating specific images, you allow your mind to spontaneously present images to you.  These images represent your symptoms, illness, or emotions.  By interacting with these images, you can gain understanding of why you are ill and how you can heal yourself.

Certainly, many of you may think this is in the realm of science fiction, but having used this process with hundreds of patients (most of them skeptical), I can tell you it’s real. 

Read another story of a doctor as a caring thought partner.  Thanks to Mallory Campoli of Smith Publicity for connecting us.

A specialist's patient-centered care: He won't do one

Throughout his career John Rossi has improved medical care, as an industrial engineer by training.  He's the best, and I was privileged to learn clinical quality improvement from him. -Ken

John's story:

My work makes me hypersensitive to flaws in any system I encounter.  I'm naturally curious about those things; I can't restrain my curiosity.

A few years ago I had pain of uncertain origin that my regular dentist couldn't find.  He referred me to an endodontist, saying "If you don't need a root canal, he won't do one."  Some people in that business will just do the root canal and that's the end of the story.

I was able to get in quickly as a new patient.  From the beginning, the experience was as good as you can make it in those circumstances.  I arrived in pain.  The initial paperwork was easy and brief.  They knew exactly what to do with my insurance.  They had already received my information from my dentist, so I didn't need to do any paperwork.  They told me exactly what it would cost me.  

When I first talked with him, he said, Here are the options, in simple terms about what was going on with the tooth.  I had had a root canal years before, and that experience was very different.  They just got in there and started doing the procedure.  Instead, he said, I can pull the tooth, but you'll have a gap that your dentist can fill; that's the other option.  Or if you want to keep the tooth, I can do that with a root canal.  

Having options is always good when you're dealing with a specialist.

He prescribed pain medicine because he couldn't do it that day.  The pain was kind of bad so that helped.

The next visit was for the procedure itself.  He was able to do the first one in one visit.  That was important because you're in the chair for a long time, with your mouth open wide.  That's not painful in itself, since you have lots of novocaine to block the nerves, but it's irritating to sit there for that long; your mouth gets tired.  An earlier root canal with another endodontist had taken three visits.

He explains what he's doing in advance, and as he's doing it:  how this works, and what he's doing.  He has technique that's very good, that's not difficult to tolerate.  He has an assistant, a surgical technician who passes instruments so can move things along very rapidly.  

He explains the aftermath, and if there's to be a second procedure, he'll explain that, telling me, This will take about this amount of time.  He predicts accurately.  And he'll say, If you have pain later, this is how we'll deal with it.  If I need an antibiotic, he gives it to me.  

I've never had any complications.  

For subsequent times, he can see me quickly, because our relationship is established.  There's no barrier to going there, even though in practices like this, it's not self-referral.  I get in there pretty quickly.

His assistant has already worked out an arrangement with the insurance company so they know what balance I owe, as my insurance only pays a certain percentage.  So she says, When you come back, come with a check in this amount, and we'll send you a check back if necessary.  I usually get a little rebate check. This is expensive stuff, ranging in the thousands, even after insurance.  It adds up pretty quickly!

They're making everything as painless as they possibly can:  the procedure itself, the lead up to it, the check-in process, and the settling of accounts at the end. 

The bedside manner is right there.  He's obviously an excellent technician, with a modern setup.  That's the stuff that's hard for the consumer to judge, other than the lack of pain during the procedure.  His manner is very gentle and calming even when you're in pain.  He brings down the anxiety level by explaining.  He'll do some small talk around the edges to bring the anxiety down, because they know people in this situation are usually in considerable pain.

It's a nice contrast.  Some surgeons are very abrupt with their patients, just saying, We're all set, all right, let's go.  That's not easy for patients or their families.  It's a very different experience with this man.

Overall, it's a collection of things, not one thing. It's all of what they do that meets those patient-centered ways of doing things.  I don't expect it as much of the office staff about the making of appointments, arrangements with insurance, the paperwork, and so forth, but they also make that painless.  While I don't like writing a big check of $1,000 or more, I'm not surprised.  It's not, We'll submit this to the insurance company and see what comes back, like with other dentists.  If I've made an overpayment, they'll pay me back.  It's all done smoothly for the patient.

I've had four root canals with this doctor, and the office process and the dental care are amazingly consistent at this high level of patient-centered care.

I give them a lot of credit for that.  If I do have to have more work done, that's where I'll go.  They've made the experience that good.  That has gotten back to my dentist; that's why he'd told me he had no reservations about sending me there.

Ken's Advice: In talking with a specialist, be sure to learn your options.  (John adds:  "If you perceive a lack of options, alarms should go off.  Be assertive, patients!")

Read a story of a dentist's patient-centered care.

A checklist for post-operative care: 25 minutes was too long

A 17-year-old girl, Mariah Edwards, had a routine tonsillectomy, with Fentanyl as a pain killer.  However, right after the outpatient surgical procedure, she stopped breathing, but no one noticed this for 25 minutes.  The only automatic monitors of her vital signs had been muted.  And no one saw her because a curtain had been pulled around the post-op bay.  She died days later from the lack of oxygen.  This tragedy could have been prevented with proper post-op monitoring and care.

Her family’s lawyers at Ross Feller Casey have posted online a free checklist of questions that patients or their advocates can ask beforehand to assure themselves that doctors and nurses will safely care for their family member.  This is particularly important because the first few hours after surgery are often the most risky due to the use of anesthesia, the delivery of pain medication, and other complications that can arise in the recovery room.

Don’t be shy about questioning credentials or asking about post-op care. You are putting your trust, medical health, and quite possibly your life, in the hands of these people, so it is absolutely appropriate that you want to know about their experience and what to expect in the recovery room. You can, and should, ask to talk to whoever will be participating in the operation. It’s not unreasonable to request to talk with the anesthesiologist, surgeon, and other members of the surgical team before any surgery is performed.

Remember, it is just as important to ask about what will happen after the surgery as it is to ask about the procedure itself. You can ask about anything that you find relevant to the operation and time spent in recovery. It’s a good idea to make a list of questions prior to surgery so that you don’t forget any.  Sometimes asking the right questions about post-op care can make the difference between a positive medical outcome and a tragedy.

Read another checklist story.  Thanks to Mario Cattabiani, the Director of Communications at Ross Feller Casey in Philadelphia and David Bernard of OutpatientSurgery.net for this story. 

Consistently taking non-daily medicine: When it’s time to replace it

I have a minor medical condition for which my doctor suggested an over-the-counter nasal spray, Flonase  (fluticasone propionate).  Sometimes, for months at a time I’ll take it daily, sometimes every other day, sometimes less often, which my doctor says is fine.  The bottle says it contains 120 metered sprays.  How to know when it’s time to replace it?

I keep a scrap of paper and a pen next to it in my bathroom, writing down the date as I administer it to myself each time.  I can count the dates I’ve written so I know when to get a new one.  By doing that, I don’t throw away a bottle with usable medicine, nor keep using a sprayer with no medicine.

This could be useful for anyone who wants to consistently take medicine.  It’s most useful for medications you’re taking on something other than a daily basis.  For daily medicine, a seven-day pill box organizer, or something similar, is probably more convenient.

End of life treatment: Teddy got ice cream

Barbara Moran’s story:

I dreamed about Teddy Kennedy.  He had died a few days earlier, and his memorial services had blanketed the Boston news.  I was jealous of Kennedy.  He spent the last days at home, smelling the salt of the ocean.  He ate bowls of butter crunch ice cream, watched James Bond movies and shared dinner with friends. 

     I’m sure Kennedy’s death had its share of horror, but that didn’t curb my envy.  Teddy got ice cream; my mom got a sterile sponge soaked in warm ginger ale.  Ted got the ocean; Mom got a gritty rooftop with a windsock.  Ted got his own bed and movies; Mom got the blinking lights of the I.C.U. and the stupid C.A.R.E. channel.  Her TV didn’t even have good reception.

     She did not regain consciousness, and died the next morning. I made peace with her death, but not with her dying.  She had four months of endless and pointless and painful procedures, and final days full of fear and despair.  Why is this medicine’s default death for so many people?

Ken's Advice:  Have the difficult conversation with your oldest relatives.  Start like this:  while eating ice cream with them, tell them what flavor you want in your last meal, tell them about Teddy’s butter crunch, and ask theirs. 

Read a story about a ”http://patientadvocare.blogspot.com/2007/01/art-buchwalds-choice.html”>contented end of life.

Thanks to science writer http://www.writtenbybarbaramoran.com/”>Barbara Moran for her story, reprinted from today’s New York Times article, “Not Just a Death, a System Failure.”