An adverse drug reaction from Seroquel: This was a revelation

A story from Kaitlin Bell Barnett's book, Dosed:  The Medication Generation Grows Up:

This excerpt is about one of the book's main subjects, a fourteen-year-old boy named Paul who has been a ward of the Florida foster care system since being taken from his parents at age five because of abuse and neglect. At the time of this scene Paul has been taking the atypical antipsychotic drug Seroquel for several years after being diagnosed with bipolar disorder. He has recently been sent to the hospital with dangerously high blood sugar resulting from untreated diabetes. At the hospital, he was diagnosed with diabetes and told he must inject himself with insulin multiple times a day to keep his disease in check.

     [Paul was] not particularly stoic about the pain. The first time he had to give himself a shot, he nearly passed out - it hurt.  He couldn't do this three times a day for the rest of his life.  From then on, whenever he had to prick himself to check his blood sugar or inject himself with insulin, he felt a wave of sadness and defeat come over him.  So far, he'd been very good at manipulating his circumstances to suit his purposes, but diabetes seemed one thing he couldn't wiggle out of.  His alleged behavioral problems were finally under control, and at the residential psychiatric center at least he'd been able to spit out the Seroquel.  But failure to inject himself, everyone told him, would put his life in danger.  

     At some point, Paul's psychiatrist explained that his diabetes probably resulted from taking Seroquel.  Paul wondered why doctors would prescribe him a drug that caused another illness, but he figured at first that they knew what they were doing.  As he got a little older, he also made a connection between the diabetes and the other side effects of Seroquel that he disliked so much - the dry mouth, the cravings, the woozy, dizzy feeling.  Once when he had either forgotten to take his Seroquel the night before or his foster parents had forgotten to give it to him, he awoke without a dry mouth, and it occurred to him that maybe he could avoid that feeling if he didn't take the pills.  So he went a week without taking them.  He felt better, and saw that his blood sugar readings were more level.  Then, the morning after he'd gone back to taking the drug, he awoke with a dry, fat-feeling tongue and abnormal blood sugar again.  Finally, he understood the connection - and realized that maybe the diabetes was reversible if he stopped taking his medication.  This was a revelation.  As he'd understood it, he'd have to deal with the condition for the rest of his life.

     By the time Paul figured this out, he have moved away from the group home and was living in a different therapeutic foster-care placement, one chosen for him because the father was a nurse and could monitor his condition.  Both parents watched like hawks while Paul took his insulin and his Seroquel, nagged him to go out and get some exercise to lose weight and control his blood sugar, and monitored his whereabouts and his grades.  Later, he would see the discipline they imposed as beneficial, but for the moment he chafed at being stuck adhering to two different medical treatments he intensely disliked, one of which - the Seroquel - seemed to be maddeningly and needlessly causing the other.

     In time, with his diabetes under control, Paul was transferred to a more relaxed foster home where, now aged sixteen or so, he was put in charge of his own medication.   He stopped taking Seroquel altogether, and noticed himself shedding weight.  Eventually, his blood sugar problems disappeared, and his doctor told him he no longer needed insulin.  He felt vindicated.

     Read a story of a similar adverse drug reaction to the anti-psychotic drug Zyprexa 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.

Face Forward: Still, I had to persist

Michele Howe Clarke’s story:
My journey was one from living in a wonderful myth of perfection, as an investment banker, mother of a six-year-old girl, with a husband, living the high life. Then it was shattered like Humpty Dumpty, by an aggressive head and neck cancer. It was a total surprise. I had this pain behind my ear, and went to the dentist. He couldn’t see it, and thought there was nothing there, so he just told me, “Some people just live with pain.”

I got pregnant, and had my daughter. Then the pain became intense. I persisted in saying, “Something’s up here.” Finally, my dentist said to see a head and neck specialist, and I did. Still, I had to persist with him too, telling him something was there, though he couldn’t see or feel anything: “No, really! There’s something going on.”

I had a needle biopsy, and was told to have a happy Christmas, as there was no way I had cancer. It was a series of unfortunate events, as it was such an unusual cancer, not in the forefront of people’s minds: adenoid cystic carcinoma of my salivary gland, so the pain was reflecting in my dental area.

I went in for an operation, and they found it was a cancerous malignancy growing into the facial nerve. I had to sacrific all the facial nerves on my right side just for a chance to live. The statistics said I wouldn’t have very long.

The surgeon came in and laid a hand on my calf with family there, and said, “I’d understand if you’d choose death instead of disfigurement.” I felt an innate resource surge in me, as I wanted to dance more with this life.

I knew I’d get on the team of playing to live. Here’s an important lesson: My surgeon told me to choose death. Then when I went into his office after the operation, with a shunt, staples, and sutures in me, I had questions. But he didn’t have time for questions; it was very adversarial. Then he handed me a scrip for a whole vat of oxycontin pills, more than 300 of them. It’s like he was saying, “This is gonna suck, so go get numb.”

This was very unusual for me, but I owned my authentic No. I said he is NOT the doctor for me. I changed course in the middle of the head and neck diagnosis. I want to shout out to everyone going through a serious disease: It’s so important that you speak up if it doesn’t feel right. You are the key person in the medical team, A1, so ask what you need. If you don’t, no one can help you. If it doesn’t feel right, ask for alternatives.

For two weeks, I asked anyone I knew for a good head and neck surgeon in New York. I landed with Dr. Peter Costantino, because his team welcomes you in as if you are a person with a future, with life for you yet. He told me, “Honey, I want to get you to your daughter’s wedding.” [Sage was six years old.] I was spoken to in the language of hope, which we all deserve. These are the things we’re allowed to ask for. You can change course if you know there’s a better way for you. For you. There are other alternatives in the medical system, since for every doctor you have, there are 100 more.

My daughter is eight and a half now.

Then I had a baby boy, almost two years old now. I trusted my body, and had a wonderful healthy son! It’s OK to make decisions for yourself.

Early on in my cancer I was told something really important about the statistics: You are not an average, not a statistic; you’re an individual with a 0% or 100% chance. You’re on the field alone, with no one to compare yourself to. There’s no way to measure an average as an individual. The average isn’t true; what’s true is what you say about you.

You can live until you die no matter what you’re facing, or you can just live until you die.

See Michele Howe Clarke's book, Face Forward: Meeting Challenges Head on in Times of Trouble.  Thanks to Linda Smith of the Ascot Media Group for arranging the interview. 

For my birthday: Just what the doctor ordered

Today is my birthday, and I'm moving into a new demographic: 55 - 64. So my birthday wishes are for something big. Not a Lamborghini; not supermodel Amazon Eve, but not a nice necktie, either.

Nope; rather: Just what the doctor ordered. That's what I want. I greatly respect doctors' judgment, so I want us to be able to know clearly what their orders are, via prompt printed doctor's orders after ambulatory visits. That was the subject of my five-minute radio segment on WBUR's Radio Boston yesterday; you can hear it here. It was also the subject of my blog post yesterday on WBUR's CommonHealth blog.

Wish #1: Sign the petition to Federal rulemakers, since they've asked for comments now.
Wish #2: Spread the petition widely to your friends.
Wish #3: If you don't agree with the idea, but feel compelled to give me a gift, make a donation to the Michael J. Fox Foundation for Parkinson's Research in honor of my father, the late great Paul Farbstein.

See another blog post on why we should get health care information as good as our dogs get.

The window for public comments to the Office of the National Coordinator for Health Information Technology (ONC HIT) about Stage 2, and implicitly, Stage 3, of the definitions of "meaningful use" of electronic health records by doctors who are "eligible providers" for Federal incentive payments is open until May 7.

Critical Lessons Learned: Metastatic Breast Cancer Misdiagnosed for Nearly 3 Years

Karen Holliman's story

This is my story and Duke’s story. It’s a cautionary story of my efforts over several years to identify the source of increasing back pain and extreme fatigue and to find appropriate treatment for its relief. As Duke doctors were my care providers at that time, it’s also Duke’s story of medical judgment, decisions and institutional processes.

This story includes necessary background information, critical lessons learned after meetings with my key care-providers and other noteworthy information.

BACKGROUND:
Since working at Duke for about 14 years, I selected its HMO insurance. I had issues with fatigue and back pain throughout 2007. In 2/2008, I went for a “same day” visit to a Primary Care Physician (PCP). This PCP ordered a MRI. My MRI showed concerns for metastatic disease in several areas of my back. A bone scan was ordered in 3/2008 which did not correlate with my MRI.

Tragically, I was NOT diagnosed with cancer in early 2008. My PCP reviewed the 2 radiology reports and believed the MRI concerns for metastatic disease were ruled out by the bone scan results. Radiology did not provide any further information to my doctor. My doctor didn’t contact Radiology and Radiology didn’t contact my doctor after the bone scan. My PCP told me I did not have cancer. I believed I did not have cancer.

I had over 50 doctor visits over the course of three years as my pain increased. I believe people who know me will agree that I am persistent; intelligent; and quick to try to resolve problems. These characteristics were utilized in the process of trying to get to the root cause of my issues. I should have had a family member or friend serving as my patient advocate. At my request my sister began going to appointments with me in 2010.

I was diagnosed with fibromyalgia which never felt right to me. This was added to my Electronic Health Record (EHR).

As early as 8/2009, my Therapist’s notes say, “She feels angry and frustrated that she is doomed to feel the pain and fatigue until someone can tell her differently.” By 2010, I was often unable to walk without assistance or rest due to agonizing and unrelenting muscle spasms. My Psychiatrist’s notes on 6/2010 say “For about a week she has had incapacitating back spasms”; “feeling very low”; and said she “didn’t want to live like this.”

I went to the Emergency Department (ED) twice in October of 2010. The first visit was appalling and I’ll explain later. On the second visit my Pain doctor called ahead ordering an emergency MRI. It was denied at the time but scheduled days later.

I received the phone call from my Pain doctor on 11/3/2010. He indicated that my MRI revealed the diagnosis: widespread cancer. Specifically, cancer was seen throughout virtually my entire spine, sacrum and pelvis, and I had a compression fracture. This news was terrifying and I became outraged as I realized my 2/2008 MRI concerns were accurate and I had gone without treatment for nearly 3 years allowing the cancer to envelop my spine. Previously, I had heard and felt that some people thought this illness was “all in my head.” I felt a strange sense of relief because my illness finally had a name. I did not expect that I would feel better with treatment but I feel much better today.

On 11/24/10 I received a procedure called Kyphoplasty to fix two compression fractures in my back. I walked out of the hospital hours later with astonishing pain relief.

Soon after this procedure the root cause of my symptoms was found. I have: Stage IV Metastatic Breast Cancer (ER+ PR+). My prognosis was estimated at three years to live depending on response to treatment. My Oncologist at that time told me to stop taking my Hormone Replacement Therapy (HRT) which I had started in 2008 and said “that is half of your treatment.” I became incensed because not only was the diagnosis missed in early 2008 but I was feeding the cancer the hormones it wanted to thrive. Also, the realization that I would not be around to care for the children of my nieces was devastating.

I received two weeks of radiation which provided more pain relief.

I’ve spent precious time struggling to understand how my diagnosis was missed. I’ve struggled with the knowledge that the delay in diagnosis resulted in a delay in treatment, which could have alleviated so many years of intense suffering, and potentially added many more years to my life (especially had I known to stop taking HRT).

I first contacted a Legal representative who said my case was a series of unfortunate events and no settlement would be offered. Legal did get expert witnesses to review my case. I was told these experts supported the doctors and were complimentary of my PCPs care.

Later, because of my anger and plans to protest, a high level doctor put me in touch with Legal again to meet with my doctors to discuss what happened. I believe he wanted to know where the system had failed and he wanted it fixed.

The Legal representative arranged meetings with key doctors around 1/2012. My family attended. I worked diligently with Patient Advocate Ken Farbstein to prepare for these meetings. My PCP and Orthopedic doctors admitted mistakes / missing the diagnosis and deeply regretted their errors. These doctors came up with ideas for improvements. These meetings were healing for me and I believe were healing for the doctors as well.

The one exception was the meeting with Radiologists. The Radiologist who read my MRI didn’t answer key questions, often shrugged her shoulders and giggled throughout the meeting. My family and I were incredibly offended. Because of this Radiologist’s behavior, we scheduled a meeting with the head of Radiology who was extremely thoughtful and we discussed opportunities for improvement.

LESSONS LEARNED:

Primary Care Physician (PCP) Meeting:
In meeting with my PCP, he said “I’m not a radiologist; ... It’s hard for us to say which test is the best test.” Yet, he didn’t talk with either Radiologist after my MRI and Bone Scan in 3/2008 and vice versa. Without better communication and teamwork between Radiology and generalists, this could happen to other people.

I yearn to go back and effectively question my doctor about the MRI and Bone Scan in early 2008. Some lessons I can share are:

- If you have any Radiology report which indicates possible metastatic disease or something equally alarming, make sure you get a definitive diagnosis even if you have inconsistent findings in another report. Rule out the worst case scenarios. Ask your doctor to speak with the Radiologist(s). Communication is so critical at this stage.

- I saw my PCP or went to Urgent Care averaging almost monthly for nearly 2 years. If you are not getting answers and are being referred to many specialists without any further answers ask the PCP to go back to the beginning of your record and review it with colleagues. In my case, the answers were already there.

- I sensed quite early on that I wasn’t going to get a definitive diagnosis from my PCP and I should have made a change. If necessary, go to a new doctor. Consider seeing a private PCP who is not affiliated with a large hospital. I am now seeing a private practice PCP who seems more empowered and seems to take more ownership in the care he is providing.

Orthopedic Meeting:
I was sent to an Orthopedic doctor in 3/2009 who could have detected the metastatic disease that was missed in 2008. My pain level was not assessed. I felt this doctor was rushed and insensitive and as a result, I filed a patient advocate report. At the time I asked them to hold my report until I reviewed the doctor’s report. I was concerned, given her interaction with me, that she would say something was wrong with my head, which she had verbalized to me during my appointment. I forgot to call back and ask that the report be released.

- Tell the doctor how you feel or make use of patient advocate resources. I regret not standing up to the doctor and not having filed the report right away. If I had filed it, my cancer may have been diagnosed earlier.
In our subsequent meeting, my Orthopedic doctor expressed deep regret and apologized that she didn’t take a “fresh look” at my case as she trusted what my other care-providers had reported. She said she had relied on my previous doctors who had made mistakes and said she too made the same mistake. She said what I had needed was a bone biopsy.

- Ask specialists to take a fresh look at your case and make sure they spend an adequate amount of time with you.

Emergency Department (ED):
In addition to the failure to diagnose my cancer for nearly 3 years, I had two visits with the ED. The first visit was appalling. I was never examined and was given two injections of Dilaudid and sent home on a Friday night still having spasms.

- I should have demanded to see another doctor and should not have left the ED without further help. The ED doctors asked me to leave twice and it didn’t feel like I had an option.

When I arrived and was being moved to my ED room, my brother witnessed personnel peaking around corners and doors laughing and heard one person mocking my moaning sounds. My brother was upset and confronted them. He said “Do you think this is funny? My sister is in excruciating pain.”

- We wish now that he would have taken names. We notified the head of the ED later.

The ED doctor didn’t update my Electronic Health Record (EHR) with the information I provided. The EHR read “No back tenderness.” “No acute distress.” I was given verbal instructions to use my bedroom for sleep and relations only. Because of the report, any payment was initially denied by my HMO. The visit was deemed “unnecessary.”

- An EHR is important but it can be a huge risk for patients if your doctor does not listen to you or use and update the EHR correctly. I believe had I gone to an out-of-network ED, for example, I would have been treated differently since they would not have had access to my Duke EHR. If you are not getting the care you think you need, ask the doctor questions. Ask about the basis for his/her decision(s). If it’s based solely on your EHR, then ask them to listen to you.

In meeting later with the Head of the ED, we felt that the ED was dedicated to addressing the issues.

Change in Insurance:
In October of 2010, I went on disability and changed my HMO insurance to a slightly more expensive option so that I could go outside of the HMO network to get some answers.

- If you are part of an HMO and having issues that are not getting resolved, consider changing your healthcare insurance so you can choose a different doctor.

Other:
Doctors are well meaning but fallible. It’s tragic that my doctors made a succession of critical mistakes.

- If you have a bad outcome, please speak with the institution’s legal representative to arrange meetings with your doctor(s). I learned a lot in my meetings. Doctors can make changes.

DOCUMENT PROVIDED TO DUKE:

The mistakes made in my case were all preventable.

I believe this failure sheds light on a lack of basic communication and collaboration between care-providers at an institution that promotes patient safety and teamwork as part of its core values.

My family, friends and I spent several weeks writing a report. I submitted the 15-page document in 2/2012 to Legal that outlined my experience, included notes from meetings, and made recommendations for possible changes that could improve the quality of care provided and improve patient outcomes. Recommendations for change were offered in a spirit of compassion and concern for other patients.

I received a thank you note from Legal representative but haven’t heard any further news. The Legal representative didn’t provide me with any further information about how the document would be used or address compensation initially requested for pain and suffering and possible loss of years of my life.

Unless actions are taken, this could happen to others. It is my sincere hope that my efforts to secure such changes will make a difference for others.

MY LIFE TODAY:
With treatment, I am feeling better than I’ve felt in many years. I am always conscious of how precious life is and I believe that those around me have become more aware of that too. I am striving to live my life with more love, patience, compassion and understanding. I have a positive attitude most of the time. At night, my mind often wanders to how my life will end and that scares me. My cancer could spread to vital organs but my biggest fear is total paralysis given the damage to my back before my diagnosis. I am single and often worry about the cost of the in-home care that I will almost certainly need. I am not in much pain now but take pain medication daily and require a great deal of rest.

I will spend the precious time I have left working to educate as many readers as possible about the lessons I have learned. I will create more joyful memories with my family and friends. I plan on vacationing this summer at a beautiful villa in Tuscany with visits from those I love. Here is a photo of the villa just south of Florence.

I hope that my story touches other people’s lives. If so, my sharing this story will have been very worthwhile.

Let’s get healthcare as good as our dogs get

My dog Jackson was born to a stray mother, and he never knew Daddy. Jackson has never had health insurance. Now entering old age (at ten), he definitely has some risk factors for poor health: uninsured, born homeless into a single parent family, aging. Yet he gets excellent health care, and of special note, he routinely gets much clearer doctors’ orders than I do.

At the end of each well-dog checkup, and at every other visit to the veterinarian, he receives a printed four-page summary that describes notes from the exam and, highlighted in red ink, the steps we should take to keep him healthy.

We weren’t brushing his teeth, so the visit summary included a paragraph on the plaque and tartar that develops with poor dental hygiene. It even recommended the specific flavor of toothpaste he’d likely prefer: poultry! Years ago, when we found a lump in his left front shoulder, the visit summary described what a lipoma was, with our treatment options. In a later visit we heard a shocking diagnosis of a cancerous tumor. In later rereading the visit summary, we absorbed more of it than when we had first gotten the diagnosis.

Sign a petition encouraging doctors' assistants to promptly print the doctor's orders for human ambulatory patients.

The vet’s electronic health record software makes it easy for the vet and the technician to produce these summaries, so promptly that the payment clerk can routinely hand the printout to us at the end of the visit. The information in the visit summary is significant, actionable, pertinent, timely and specific; in short, it’s highly meaningful.

For example, when Jackson recently ruptured a spinal disk, the visit summary specified the timing, contra-indications, and pill-sweetening Pill Pockets (again in that yummy chicken flavor) for a pain medication and an anti-inflammatory (think canine ibuprofen), and the rules for a month of doggie bed rest: no running, jumping, stair-climbing; minimal walks; a harness to replace the collar, etc. The visit summary enabled us to engage actively in his recovery.

In spreading the use of electronic health records for humans, the powers that be are deciding what constitutes “meaningful use” by doctors of the E.H.R. They’re gathering comments from the public until May 7, 2012. We humans are just as deserving as our dogs; we too, should get doctors’ orders as clear as our dogs get.

Please sign the petition so that the Stage 2 and Stage 3 definitions of “meaningful use” shall routinely and promptly include printed doctor’s orders after an ambulatory visit, to build patients’ engagement in their care.

That’ll give us meaningful use of the electronic medical record, in the consumer’s eyes – at a cost less than a dog biscuit.

See an earlier story about Jackson in my e-book.

Shared Decision Making and Mike Wallace

Mike Wallace, the well-known veteran journalist of CBS' 60 Minutes, passed away on Saturday.

Working in journalism for more than 60 years, he died at age 93. He had lived for many years with heart problems. He had had a pacemaker installed more than 20 years ago, and had had triple bypass surgery in early 2008.

Experts are becoming more skeptical about many forms of surgery and screenings, particularly heart surgery. The National Priorities Partnership, for example, has identified coronary artery bypass grafts (CABGs) and percutaneous transluminal coronary angioplasty (PTCA), among others, as often unwarranted, and has recommended that healthcare organizations concentrate on reducing them. Yet Wallace was able to live to a ripe old age with the benefit of several heart operations. It's very complex to ascertain whether an operation is right for a certain person. That's why shared decision-making, perhaps with a patient advocate, is so important.

Shared decision-making will be the subject of a forum in Waltham, Massachusetts on April 10, organized by the Massachusetts Health Data Consortium. Dr. Henriette Coetzer and David Veroff of Health Dialog will make presentations for the session, entitled "For Good Measure: Identifying Opportunities and Outcomes for Patient Decision Quality."

For considerations in the surgery decision, see Chapter 3 of my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

Global payment and fee for service: They've been to the mountaintop

As a 13-year-old Jewish boy in April 1970, I read aloud and lectured to the congregation on the biblical rules telling the priests, who served as doctors, how to diagnose leprosy and other skin problems, in Chapter 13 of Leviticus. In ancient times, the Levites served as teachers, doctors, and medical assistants. They'd been chosen for those roles because of the good judgment, loyalty, and mettle they'd shown in times of hardship.

Nowadays, our best teachers and healthcare professionals are often secular. Paul Levy, for one, may or not genuinely be a Levite. And he certainly doesn't spout much dogma. He has certainly been tested; the job of a hospital president may be the most complex job. And Beth Israel Deaconess Medical Center, where he played a starring role, is an excellent place for a patient visit or inpatient stay - but it's tough on its presidents.

Paul will speak on Thursday, April 12 in Boston about his politically incorrect views on global payment. Some of his earlier thoughts on global payment have clashed with current dogma. The talk will be part of a conference on payment reform, organized by the Massachusetts Health Data Consortium. Joining Paul will be the deliciously tart Dolores Mitchell (on a later panel on cost control), fellow contrarian and CEO Charlie Baker, and other insightful speakers who've been to the mountaintop, so it should be very thought-provoking.

Meaningful Use of Electronic Health Records by Doctors

In the past few weeks, my mother, mother-in-law, son, and daughter have had doctors' visits in which the doctor gave them a number of instructions. In each case, they would have benefited from a printed list of doctors' orders, which should be well within the capabilities of their doctors' systems. They won't go to the Internet to see their medical records, because of the seniors' limited use of the internet, or adolescent disinterest.

Yet our dog's veterinarians print out their orders routinely and immediately, which can be very helpful.

Let's insist on getting medical care as good as our dogs get! Stay tuned to this page for instructions on how to give your input to the Federal rule-makers who are now in Stage 2 of defining the minimum requirements for a doctor's "meaningful use" of an electronic health record. Your input will be helpful now, and in setting the agenda early on for Stage 3.

Our comments will pertain to Sections 170.314(e)(1) and 170.314(e)(2) of RIN 0991-AB82 of the proposed rule, as noted at 77 FR 13838-41 and 77 FR 18856-57.

You can see the entire specifications by the Office of the National Coordinator for Health Information Technology for meaningful use.

The Opposite of Rocky: Hospitals' Use of Social Media

As a grown man, this hurts to admit, but I cry at movies. Some of them. A little. Like when the very battered and bloodied underdog, Sylvester Stallone, having gone all out to become a contender but of course, having lost nobly, cries out for his loyal girlfriend Adrian! to comfort him in the ring. And she, overcoming shyness and any prissiness at getting her nice coat soaked with blood and other bodily fluids, struggles up to comfort him there.

Now, even at that moment, while tearing up, I also feel some self-disgust, for I know Sylvester has been toying with me, peppering me throughout the movie with left jabs (she's homely but he loves her anyway!) and rights (they took away the big lunk's locker!) to set me up for the emotional knockout. And then I fall for it.

That scene came to mind after my recent research for a white paper on hospitals' use of social media. I came across one of the Facebook pages of Children's Hospital of Boston. The page shows at least 69 comments by family members, thanking Children's Hospital for caring for their children. It was my job to read all of them, moving me to tears more than once. These children overcame dreaded diseases, through their grit, and the skill and compassion of their doctors and nurses. Most of them had improbable Hollywood endings. May the others rest in peace, in loving memory.

That page has been liked by 700,000 people. The hospital's leaders recognize the importance of creating a favorable public impression among the parents of sick children. If the hospital's reputation is spread far and wide, the staff will be able to treat and save the lives of even more children. That's good for business, too. They've topped the page with the US News & World Report's headline that Children's ranked #1 in more specialties than any other hospital. That's fine; if you were in their place, you'd do the same thing. They've also used some tricks of the trade that Sylvester might admire. For example, to even get to some of the pages, you have to Like them first. That boosts the number of Likes, the coin of the realm.

Yet I admire Children's, and Sylvester. What's not to Like?

To read the free, three-page white paper with examples of hospitals' use of social media to improve patient safety, go to Swisslog's Facebook page.

Thanks to Swisslog for sponsoring the research.

25th anniversary of ACT UP: A tribe in desperate trouble

This month marks 25 years since the the start-up in 1987 of ACT Up (AIDS Coalition to Unleash Power), the coalition of gay activists that transformed health care for AIDS. The changes they won in funding to fight AIDS, in the ways medical research is performed, etc., marked an historic event in consumerism: the first major victory won by the grassroots efforts of citizens at risk of a particular disease.

My gay college friend Don may be alive because the gay community acted up since then to safeguard themselves, and to speed the development of anti-retroviral drugs that kept many of his friends healthy.

I hope we in the patient advocate community can one day be equally successful in promoting safer care. As Frank Bruni wrote in the NY Times on March 17: "a tribe in desperate trouble...elected self-reliance over self-pity, tapping its own reserves of intellect, ingenuity and grit to make sure its members were cared for."

Choice of a healthcare proxy: By the flip of a coin

A close friend recently described the anguish he felt during his father's final days. His father had appointed both my friend and his older brother as co-proxies, not wanting to show favoritism. Unfortunately, the two sons couldn't agree on hospice care for their father. In the face of their disagreement, hospital staff assumed that by default, they should continue aggressive efforts to save the patient's life, and did so.

Advice to seniors: Choose one of your adult children to act as your proxy in case you are not able to inform hospital staff about your decision for care near the end of life. If you have two children, you can flip a coin, and notify the preferred proxy that s/he won a coin toss. (You may have to flip the coin more than once.) Tell the preferred proxy you'd expect him to consult the other family members prior to making a decision using the living will as a guide (unless the decision needs to be made quickly). That way, they'd gain the benefit of others' thinking, but will still speak with one voice to all the health care providers, to give them clarity about what they should do.

This should prevent any resentment from the child you have not chosen as the proxy.

See a story about a simple living will.

A breast cancer survivor's interview: To wring their perfectly coiffed head

Question by Karen Weintraub: You talk about getting a lot of strength from other people going through treatment, people you met in hospital waiting rooms and elsewhere.

Answer by Kelley Tuthill: For me, that was a constant theme of being sick. There was always somebody who was dealing with something far more challenging than I was facing. You say, if they can face this, I certainly can do this.

Q. Was it challenging to be so public about your disease?

A. It was an incredibly positive experience to go out in Boston and have people say - even today - "how are you doing?" The flip side is some pain that the public feels, they share with me, and that's difficult, too. By going public, I've had opportunities to try to do something about [my frustration with the lack of a cure]. My coping mechanism is to try to help.

Q. Do you have any advice for people whose friends or loved ones are going through treatment now - things they shouldn't say to cancer patients?

A. That "you have the perfect head for being bald." If one more person told me that, I was going to wring their perfectly coiffed head! People mean well, but you go: Really? Really? I don't think so.

Q. People with life-threatening diseases often talk about how the challenge made them stronger. Was that your experience?

A. My life is better than it was five years ago, hands down. I appreciate life more. I have so many amazing people in my life now - and that's because of breast cancer.

Read another story about a breast cancer survivor. Thanks to Karen Weintraub for her interview of Kelley Tuthill, excerpted here from the G Section of today's Boston Globe.

The Patient Advocate's Bookshelf

During 2011, these books were mentioned on the blog, in addition to mine, Getting Your Best Health Care: Real-World Stories for Patient Empowerment:

Are Your Meds Making You Sick? by Robert Steven Gold

A Sea of Broken Hearts by John James

Cooking with Arthritis by Melinda Winners 6/17/11

Ellen in Medicaland: True Stories of How I Fell Down Medicine's Black Hole and Still Lived After All, by Ellen Kagan

Notes from the Waiting Room: Managing a Loved One’s (End of Life) Hospitalization by Bart Windrum

Overdiagnosed: Making People Sick in the Pursuit of Health, by H. Gilbert Welch, Lisa Schwartz, and Steven Woloshin

Provider-Patient Partnerships by Helen Meldrum and Dr. Mary Hardy

Advice: Professional patient advocates should read these books.

Adverse effects of an anti-depressant: A complete 180 degrees

The story of Peter Andrew Sacco, PhD:
I had a client I was seeing a couple of years ago who came to me after seeing a psychiatrist. The individual was diagnosed with obsessive compulsive disorder, generalized anxiety disorder, depression as well as aspects of personality disorders which included borderline personality disorder as well as dependent personality disorder. This client had been referred to me from a colleague/friend knowing I am a cognitive behavioural psychotherapist who also specializes in relationships, addictions, anger management and stress management. By the time I saw this client, they were in a suicidal state.

After doing a case history, I could not believe what I had witnessed. The client who was in their late 30's had no history of chronic or clinical depression and no history of personality disorders. Rating them based on global functioning and changes, I looked to major life events or changes in the last 6-12 months. Lo and behold, they had recently gone through a relationship break-up (not their choice), a recent career change (actually a better one, but one that was extremely stressful and they were learning on the job training) and some other familial upheavals. They never had a history of chronic depression, anxiety, obsessive-compulsive disorder (OCD) or violence of any sorts.

When I inquired as to when the depression and suicidal tendencies, as well as intense OCD and anxiety reached their highest levels, the answer was two weeks before coming to see me. They had been to see the psychiatrist who put them on anti-depressants, which they should not have been on for situational depression/grief, and these meds had provoked not only greater episodes of depression, but psychotic thoughts as well. The client (the responsibility falls on them for this aspect) was consuming alcohol while on the wrongfully prescribed meds. Upon getting off the meds, engaging in cognitive behavioural counselling (CBT) and stopping their consumption of alcohol, his mood state did a complete 180 degrees!

Peter Andrew Sacco, Ph.D., is a psychology professor and author of Sweet Acceptance Vs Bitter Resistance. You can email him at psacco1@cogeco.ca.

For professional patient advocacy stories in mental health, see Chapter 6 of Ken Farbstein's book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment. Thanks to Monica Foster and Nicola Williams of Ascot Media Group for setting this up.

Healthcare billing: He's pregnant, so they billed Workmen's Comp

In getting my son off to college, I just ran across this story, which occurred just before he was born, when my wife Daryl was pregnant.

Ken's story, Sept. 15, 1989:

We've kept Daryl's pregnancy confidential until recently, hoping to restrict the news to a small circle of our parents, closest friends, doctors, nurses, technicians, receptionists, and medical records technicians. Imagine our surprise when the first bill was sent promptly to her employer!
Telephoning, I learned that of course, this information was not released maliciously; bills for Workmen's Compensation are always sent to the company. But wait! This wasn't an accident; it was a planned pregnancy. And the process that brought it about was definitely not industrial, mechanical, or manufactured. In short, it wasn't a Workmen's Comp claim, as should have been obvious from a cursory reading. Apparently, the billing clerk at the doctor's office somehow entered Workmen's Compensation as the payer. When the computer did not immediately reject the claim, the clerk assumed it was okay, as did the laboratory staff and hospital staff. The computer didn't express any surprise that my pregnant insured wife Daryl was "male," nor that a urine sample was claimed as an inpatient procedure, nor that Workmens Comp will not pay for pregnancy (which my wife, I hope, did not incur on the job!).

During my phone call, I tried to reach the only person whose name appeared on the bill, but she had left the hospital staff. Instead, I reached a clerk who had initialled the bill. Her spoken English was modest, so I explained: No, my wife does not have a baby. No, we didn't have a baby that died. Yes, my wife is fat, but I don't mean that she is at high risk because of it; she is getting fatter, and in a few months she will have a baby and then she will not be fat. And so on.


The story has a happy ending: our HMO was billed, so neither Daryl's employer nor we had to pay. More importantly, our son was born several months later, and is now a fine young man of 21.

I wrote this story on the birthday of my father, may he rest in peace, and I can hear his ready laugh.

Ken's Advice: Dispute your bill if you have to, and keep your sense of humor.

Read more stories in my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

Integrative medicine for pain control: He has been fired by doctors

Dr. Corey Waller’s story:
M. is a 34-year-old male with a relatively normal medical history, except that he had an injury to his hand six years ago that led to complex regional pain syndrome (formerly called reflex sympathetic dystrophy). There was injury to his spinal cord, so he required relatively complex treatment, because of the pain and swelling in his arm. His pain proved very hard to control with the opiates he got from his providers. Some of them tried some pain interventions, but no one addressed how it affected his life in general, e.g., his child, or his ability to work.

He’d had continuing frequent use of the Emergency Department, and had been “fired” by multiple physicians who tried to wean him off the pain meds. So he was generally angry and frustrated as a result of that, which created a lot of defiance, making him ready for a fight in the doctor’s office or the E.D. So ultimately, he didn’t get good care.

He came here to our Center for Integrative Medicine in western Michigan . My RN case manager, our social worker, and I saw him. We identified some financial issues, so we had our financial counselor talk with him too. The social worker got at some of the psychological issues that were secondary to his pain. We went through some different approaches to his treatment, and settled on one option.

In his first week, he had three visits scheduled (we offer a lot of visits in a compressed time), and he showed up for all of them. He has called a couple of times, but hasn’t walked in, though we encourage walk-ins from our current patients.

So far, that has paid off for him; he has already been making changes in his life, like organizing some things, getting out of bed when he should, getting Physical Therapy, meeting our requirements for calling our social worker for his scheduled Touch Base calls, filling out the prior authorization paperwork for his insurer, etc. We put a lot in the patient’s hands, to make them responsible for their care as much as we can.

He has been fired by doctors, because of arguments with them. Now he’s following through. Contracts don’t work with these patients; poorly controlled pain or the disease of addiction trumps any contract with the doctor. A contract between a doctor and a patient for pain medications, e.g., that the patient won’t receive narcotics in another setting, is a way for the doctor to fire a patient, to justify letting that patient go. That’s appalling! If a patient has breakthrough pain at 3 a.m., and goes to the E.D., I see that as evidence that my treatment plan hasn’t worked, that I’m not doing my job. Instead of contracts, we give them trust. They become more trustworthy in doing their job as patients. "Don't mistake this as naivety. This approach was born from extensive experience with this population."

We don’t fire anyone. We see their behavior as a symptom. We use a lot of carrots, not sticks. One carrot for M. is that I’ll work tirelessly to handle his rare, frustrating and very real disease, i.e., I’ve done my reading in the medical literature, and have gotten the approvals from the insurer as needed. That’s doing my side of the bargain. And my social workers have talked to their counselors, and have done their homework. It has to be a team effort. If a patient calls us, we need to answer them in a timely fashion.

You have to deal with the psychiatric component as well as the medical and social components. We saw that M. had a financial problem, which could get in his way. He was smoking two or three packs a day – that’s a lot of money! We treated him for that to free up his money. We gave him nicotine replacement therapy with counseling and close monitoring.

This week, we’ll give him a choice among three pathways we’ve come up with. We’ll put together the risks and the benefits, and let him mix and match based on his concerns. We let the patient decide on the treatment plan when possible, because if the patient can choose the therapy, it’ll be more effective.

Dr. Waller’s advice: Ask the doctor: Give me three options, and tell me about their risks and benefits.

Thanks to Dr. Corey Waller for the interview, and to Liz Kidder and Bruce Rossman for setting it up.

Sharing doctors’ Open Notes with patients

Jan Walker and her colleagues just published an article about patients' and doctors' attitudes toward sharing doctors' appointment progress notes with patients. In an interview, she described some of the most interesting findings:

We ran the Open Notes experiment at three sites, in urban/suburban Boston, rural Pennsylvania, and inner-city Seattle over 12 months, through this summer. The published article discusses the results of surveys, before the experiment began, of both the doctors and patients about the idea of open notes. According to these findings, patient expect that reading notes will help them understand their health and conditions better. The team also surveyed patients and doctors after the 12 month period, to find out what actually happened, and hopes to publish those findings in spring/summer 2012.

So, results are pending, but the researchers have heard some stories along the way of impacts of sharing notes, and are sometimes catching things. Early on, there was a doctor who called to mention his first experience with Open Notes, saying that at an appointment with a patient, he’d mentioned a test, but had forgotten to order it. The patient read Open Notes and told the doctor the test hadn’t been ordered, and asked that it be ordered. As another example, we had a patient who went home after her appointment and thought, I remember the doctor said three things, but I forgot one of them. So she read the note, in which the doctor advised that she should check out a spot on her skin. So she had a Dermatology appointment, which was a good thing, as it turned out that the spot DID need medical attention.

So things that were missed may be picked up earlier. One doctor, who’d been dragged somewhat reluctantly into this project, said, “a few months in, I felt safer because there are more eyes”; medical care is so complicated, that the extra set of eyes really helps. We had approval to run the experiment for 12 months. At the end of the study, we notified the doctors that the official study period was ended and that they could certainly drop out and we would turn it off. Not one doctor asked to have Open Notes turned off.

This could create more trust between doctors and patients, by opening the black box, and making all this less mysterious than patients may have thought. Some patients, we learned to our surprise in the focus groups, don’t realize that doctors write notes about the visit. Patients don’t all know they have a legal right to their medical records, in the Federal HIPAA law.

We thought that the younger, more tech savvy, better educated patients would be very interested in the doctor’s notes, but not necessarily older, less savvy or educated patients. But across the board, everybody is interested. That really surprised us.

Jan’s advice: Even if your doctor doesn’t use an electronic medical record, ask to get a copy of the doctor’s note about your visit.

The article appeared in the Dec. 20 issue of Annals of Internal Medicine. Thanks to Jemma Weymouth and Morgan Warners of Burness Communications for connecting me with Jan.

Read another article on a provider that gives even their woofing patients access to their progress notes.

Santa’s doctor writes: My letter to the North Pole

Dear Santa,

Your lab tests came back, and your cholesterol ratios are out of line, again. As I mentioned in your physical, I’m concerned about some of your habits. For almost the entire year, you’re very inactive. Living as you do in a very isolated neighborhood in a very cold region, you don’t get out and about very much. That isolation can be very dangerous for a man of your age (or, indeed, of any age). Then in late December, you rouse yourself for a short period of supremely intense activity, logging many miles over rough terrain, and then wrestling heavy awkward bundles out of the sleigh, then climbing up icy roofs while lugging these countless loads, then forcing yourself down through narrow spaces, then hauling yourself back up, and on to the next place. For a man of your girth and your age, it’s simply too much.

I’ve explained all this at your last physical, as I do every year. I’m writing this letter out of frustration, since you never do what I say. I never hear that you’re taking the niacin I’ve suggested, or the statin I’ve prescribed, for your high cholesterol. I never see any evidence that you’ve lost weight.

To be fair, I do want to applaud you for the healthy habits you do follow. You’re exceedingly generous, and selfless, as you love giving things to people. Your belly laugh is a real gift to others, and to yourself, as it discharges a lot of the tension that might otherwise lead to high blood pressure. The affectionate attention you give to the young children brought to you by their parents is good for them, and for you. You have a definite mission in life, and you serve it diligently, which also helps. You haven’t seem to age much over the years, so it must be that these healthy habits have been giving you these long years of healthy life in your old age, counteracting the factors I mentioned earlier.

I’ve long wondered about your ruddy cheeks and nose. In many people, that’s a sign of heavy drinking: after many years of drinking, the capillaries in a person’s face rupture. But when I’ve asked, you’ve consistently denied that alcohol has been a problem for you, and I’m inclined to agree, as I’ve never heard, from you or anyone else, that your behavior has been inappropriate due to alcohol. Indeed, moderate drinking (one or two a day, for a large adult male) is a healthy behavior, so it seems that you’re OK there.

So, what is my wish for you for Christmas? Get out and about the other 11 months of the year; spread the cheer year-round. Get some more helpers, and don’t limit your deliveries of all that stuff to such a short period of time. And take the cholesterol meds!

Yes, I’ve said that before (every year, indeed) at your physical. So let’s also try something different, since that hasn’t had any effect: a shared medical appointment. I’d like to form a group you’ll feel comfortable with. I’m thinking of other altruistic people who do too much, neglecting their own health. There are lots of very driven, loving, compassionate doctors and nurses out there, for example, who are overweight and aren’t following the medical advice they know so well. I’d like to get you all together, and we’ll have some fun swapping stories. I’d like to get the group sharing some of the ways they stay healthy. They, and you, might learn from peers, and might find those ideas more compelling than following a doctor’s advice per se. That’s my wish for you.

For my own gift this Christmas, thanks, but I already have plenty of golf clubs. Give a gift for me to Heifer International, which gets farm animals to poor people around the world. Just mail them a check; don’t lug around any of their water buffaloes!

My best wishes for another year of health,

Your doctor.

Ken's Advice: As a stocking-stuffer for a parent, get Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

As though everything is a miracle

This week marks the fifth anniversary of Patient Safety Blog, which I began writing in December 2006. My purpose remains the same: to advise both family and professional patient advocates how to get the best health care.

The stories in the blog have been read hundreds of thousands of times, by readers from Algeria to Zimbabwe, by patients and world-renowned patient safety leaders. The most popular post was not about human health care, but about my dog Jackson's superlative healthcare - a model for human healthcare.

Jackson's tenth birthday is today, making him sixty-something in people years. He has been actively puppyish and in excellent health, until Saturday, when, in a sudden health crisis, a disk in his spine apparently ruptured. At this point, we don't know his prognosis. He could be like a middle-aged weekend warrior who throws his back out and then heals with rest alone. Or it could be something much more serious, requiring major surgery or even wrenching end of life discussions. It seems this has suddenly vaulted him into old age. We hope that he'll continue to get superb healthcare.

I'm heartened that tonight is the first night of Chanukah, which celebrates miraculous restoration. As a favorite aunt's holiday card quotes Albert Einstein: "There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."

Advice: Take a lesson in good health from Jackson: have a run or walk every day; get plenty of good sleep; love your family, and they'll pet you.

Prostate cancer decision-making on treatment: Would you cut off your left foot?

Paul VanDevelder, a middle-aged journalist and father, learned five years ago that his PSA (prostate specific antigen) test showed a sudden spike in his PSA level, making him feel panicked. A doctor friend calmed him and had him learn a lot more. Paul learned that for 88% of men with elevated PSAs, the results were a false positive.

The prominent Dartmouth Medical School researcher, Dr. H. Gilbert Welch, explains the odd truth: "The presumption often is that anyone who has had cancer detected has survived because of the test, but that's not true. In fact, and I hate to say this, in screen-detected breast and prostate cancer, survivors are more likely to have been overdiagnosed than actually helped by the test." Indeed, the U.S. Preventive Services Task Force formally recommended in October 2011 that doctors stop using the PSA blood test to screen healthy men for prostate cancer.

Paul will get retested in a year, and will think carefully before any prostate surgery. He explains his decision this way to his urologist: "If your doctor told you that an asymptomatic, non-life-threatening tumor was growing on the instep of your left foot, would you cut your foot off?"

Advice to men with elevated PSA levels: Think carefully before deciding on prostate surgery.

Read about another journalist's decision on prostate cancer. Thanks to Paul for sharing his story in today's Los Angeles Times, where the full article can be found.

Diarrhea from CAT scans: Otherwise healthy, well fed and feisty

Sandy’s story:
I am a 66-year-old cancer patient diagnosed with colon cancer fall 2006, treated with surgery and chemotherapy. My surgical treatment consisted of a partial sigmoidectomy; loose movements are not a post op complication or pattern. Other than some allergies, and some mild, intermittent, infrequent asthma symptoms and aging bones, I am otherwise healthy, well fed, and feisty.

Now, having had several CAT scans, and having passed the fifth anniversary of my diagnosis, the plan is for me to have no more scans unless symptoms should develop that require them.
I was a nurse in the days when the only way to diagnose diseases such as cancers was to “go in” and have “look/see” exploratory surgery. I remember when the first CAT scanner arrived in Boston and the waiting lists for the test. Scans are clearly a far more accurate, “pleasant”, and life-saving tool. Yet I have a hunch that one of their side effects might be underreported.
My first three CAT scans resulted in mild cramping and a few loose bowel movements over the course of several hours. The fourth scan led to intermittent diarrhea over 6-8 hours, with onset approximately an hour after completion of the test, making the interval significantly more unpleasant than previous years. When I shared the observation with my oncologist on my subsequent visit, it was dismissed as not meriting concern.

Prior to my fifth test I began conversing with another elderly patient in the waiting room. She revealed that she lived more than an hour away from the imaging center, and was providing her own transportation. After her previous scan she had severe, sudden diarrhea on her way home, soiled herself, and feared the same might recur. Her medical condition did not involve any problem with her colon. She had been too embarrassed to report the previous incident to her medical team.

My fifth anniversary CAT scan took place in November 2011. For scanning purposes I was asked to ingest barium sulfate. The imaging center that administered the test I believe uses readi-cat smoothies for their patient prep. My scans have usually occurred briefly after noontime.
I was taken for my scan 20 minutes early, had not even completed the second bottle of contrast, but was reassured it “would be all right”. Afterward, I reached home in about 20 minutes travel time, barely “made it” into the bathroom. I had severe bloating, explosive diarrhea, that led to my spending several hours out of the next 6-9 on the toilet. I also experienced mild nausea, cramping, intermittent sweating, late onset “headache” and my “usual” back pain. The experience was far worse than any colonic cleansing prior to previous colonoscopies. There was no sign of an allergic response such as urticaria or wheezing. I did not report the event at the time. My next medical visit is planned for early January; I will do so then.

The technician (for the first time) did tell me prior to my leaving the imaging center that I may experience diarrhea, leading me to wonder if more frequent, more serious cases of it are being reported. When I told her I was aware of the possibility and that symptoms were worse after each test, she replied that she was “not surprised”.

Discussion of the radiologic dosing with respect to scans is common. I do wonder however, at the range of acceptability in side effects for patients undergoing such tests, how often they are actually warned about their possible severity, and whether such effects are either reported or dismissed upon doing so. In a frail, ill, low body mass, or older individual living alone, an episode such as the one I had could have led to a serious medical situation, let alone a simply unpleasant one.

I believe other preparations are available. Of course no alternative is offered if there is no effective reporting and tracking of statistics indicating the need for the substitution.

I wonder how often patients are warned about the possible severity of symptoms, whether increased sensitivity with repeated exposures may be a factor, and if any plans are in place to consider that and offer alternate contrast media in any radiology centers. Of course no alternative is offered if there is no effective reporting and tracking of statistics.

Sandy’s Advice: If you have these side effects from the barium sulfate, Medline and the Mayo Clinic say that you should report that to your doctor or health care professional as soon as possible:
allergic reactions like skin rash, itching or hives, swelling of the face, lips, or tongue
bloating
breathing problems
chest tightness
prolonged nausea, constipation, diarrhea or pain in stomach or abdomen
fever

At the very least there should be a “call your doctor if” pamphlet given to patients. Not everyone has other ways of obtaining any or even accurate information other than from their medical care teams. Some patients for varied reasons may not question doctors, technicians, or perhaps even understand the discussion if it takes place.

Robert Gold's book, Are Your Meds Making You Sick?: Just what Santa's doctor ordered

In this day and age, Santa's doctor would have him taking a statin for his cholesterol, and an ACE inhibitor or calcium channel blocker for the high blood pressure caused by the tension of meeting all those urgent customer demands. Luckily, the interactive effects, and potential adverse reactions to those and many other drugs, are discussed in Robert Steven Gold's new book, Are Your Meds Making You Sick?: A pharmacist's guide to avoiding dangerous drug interactions, reactions and side effects.

Gold, a hospital pharmacist and instructor of clinical pharmacy at Purdue University, lists 16 rules of safe medication use. In each of 30 case studies, he describes a patient, his or her symptoms, the suspect meds, a summary, the mystery to be addressed, the drug "culprit" and "accomplice," the solution, the odds that you'll encounter a problem, and advice for those taking that medication. The case studies illustrate the usefulness of the rules.

Professional patient advocates should buy this book so they can advise patients who take any of the dozens of drugs that Gold describes.

Gold's book is available from the publisher, Hunter House. Thanks to Sean Harvey for connecting us and making available a copy of the book.

Magic is for fairy tales: A useful placebo

Michael Spencer's story:
Three years ago, a week before Thanksgiving, while I was sitting in my office, my chest began to throb. It was a diffuse pain, but pain nonetheless. I am a middle-aged man with the usual amount of stress (too much) and I handle it in the usual way (denial). My cholesterol and blood pressure are normal, and I exercise regularly and try to eat sensibly. Still, I have read many obituaries of "healthy" men my age who ignored chest pain. So, somewhat sheepishly, I called my doctor and explained the situation, and he told me to come right over.

He conducted a thorough examination, and then we talked. He told me I was fine, that Thanksgiving is often a tense time, and that I should relax. My pain suddenly disappeared. I have written frequently of my belief that magic is for fairy tales and science is for humans. But something about that process soothed me. Of course, it was a relief to know that I wasn't sick. But could words really banish a pain I had struggled with for hours?

After I got home, I realized that I had been given a placebo. Not purposefully, perhaps, but it had the same effect. My doctor told me that I was fine, and that made my pain go away. It also eased my anxiety at least as effectively as if I had swallowed a pill. My doctor takes an extremely science-based approach to his work. That's what makes him so good at his job. But that afternoon we engaged in exactly the type of ritual that, according to Harvard Medical School Professor Ted Kaptchuk, will have to play a critical role in the future of American health care. And, at least in this instance, it would have been hard to argue that it didn't work.

Thanks to Michael Spencer, from whose article in Dec. 12 issue of the The New Yorker this was reprinted.

Yes to biking, Yes to hiking: Heart transplants

Today is the 44th anniversary of the first heart transplant in the U.S., back in 1967. Nowadays, heart transplants are safer and more common, and more complex transplants can be performed. A domino transplant is performed on patients with cystic fibrosis because both lungs need to be replaced and it is a technically easier operation to replace the heart and lungs at the same time. As the recipient's native heart is usually healthy, it can be transplanted into someone else who needs a heart transplant.

Here's the story of Andrew Wilson, a 30-something Brit who received a heart transplant in 1987:

It all started when I was ten days old and I contracted suspected Meningitis, the virus attacked my heart muscle, the doctors at Warrington General Hospital also suspected I had also suffered from a stroke leaving me with slight brain damage and a weakness down my right side.

My early life was spent in and out of Hospital's suffering from many chest infections and viruses. I was placed under heart consultant Dr. Arnold at Myrtle Street Children's Hospital in Liverpool. I was placed on a cocktail of drugs from an early age such as digoxin, frusimide aimed to stop my failing heart. 
As I grew older into my childhood my condition worsened and I was un able to do the normal things kids did back then, I was a mad football fan and was unable to play football or walk very far without feeling breathless and tired.

As the years drew on it was decided to transfer me to Harefield Hospital as Dr. Arnold had told my mum (Sue) and dad (Bryan) that there was nothing more they could do and that I needed a heart transplant, so we waited for the call to go down to Harefield......

Transplant Years- The Gift Of Life! 
Finally we got the call to go down to Harefield and little did my parents and myself know the life changing effects that one journey would have....
I underwent the tests and expected to be home in time for Christmas after being put on the waiting list.
In the early hours of December 17th 1987 I was visited by non other than Professor Sir Magdi Yacoub and after seeing me told my mum and dad that I needed a heart transplant and there was
A HEART AVAILABLE THAT VERY NIGHT!!!
A young Scottish girl named Samantha Dawkins who had suffered from cystic fibrosis needed a new heart and lung transplant and had decided to donate her heart for transplantation.
Both my parents were left with little time to decide on the life saving operation, but woke me later that night and told me I was going to have a heart transplant!!

Funny as it sounds my parents told me I was in high spirits as I went down to theatre, my parents then said good bye and my life was about to change.

The operation itself went on for nine hours and after a few hairy moments placing me on the life support machine the operation was a success.

I spent over six months at Harefield and in that time lived in Harefield Village in the designated flats for the patients well before Parkwood was built (on site accommodation).
Eventually I was able to finally meet the young girl who had saved my life and soon enough we had struck up a friendship I was given a St. Christopher medal with the message "With All My Heart Samantha." I also gave her a golden heart locket, the gifts symbolised the bond between us.

I had expected setbacks with rejection in the early days including a biopsy which had gone wrong, a surgeon accidentally went through an artery in my neck causing blood to flow into my chest and lungs, I was then placed into intensive care where eventually I recovered. 

Despite that my childhood from the age of nine changed for the better as I was finally able to play football, run in local school races and do everything my fellow friends could do, it was indeed a whole new experience and a welcome one!

 Whilst down in Harefield both Samantha and myself had the opportunity to meet H.R.H. The Duchess Of York when she opened at the time the new intensive care unit.
 We also appeared on such programmes as T.V.AM and Bodymatters, and were interviewed by the national newspapers,( I guess you could say we were celebs Ha..)
 I also helped in fund raising for Harefield and the British Heart Foundation. Being a Liverpool fan I was also lucky enough to have my childhood dream granted and became the mascot for the reds back in 1988.

"My Heart Is Yours"
 For eighteen months both Samantha and myself enjoyed a bond beyond friendship, we often kept in touch taking a holiday to Blackpool, as well as spending time together at Christmas. As time drew on Samantha unfortunately contracted a virus and desperately needed a new transplant, though sadly this time there wasn't a donor available and she died a day after her 17th birthday in 1989. I take comfort in the fact that a part of Sam still lives on inside me, and that I got to see her before she died.

After Samantha's tragic death I appeared again on T.V.A.M talking about the need for donors. Since then, though I have found it hard, I have tried to move on. I still keep in contact with Samantha's family (Liz, Roger and Jason). 

Health wise I have gone from strength to strength with only my last rejection in 1993 and a heart rhythm disorder in 1996. I was then placed under Dr. Banner, I then underwent a small procedure to stop and restart my heart, thankfully it worked and with the help of medication I recovered.....
Flash Back - Be Positive in Mind!

With regards to my schooling I attended Hamblett School which was a school for children with disabilities as I also suffer with cerebral palsy, I eventually left after my transplant and moved into main stream where I then moved on to college gaining a G.N.V.Q in business studies at Distinction level and also a G.C.S.E In both English Lit and Language grades A for course work and B and C for the respective exams. I also studied on a creative writing course gaining university credits though I did not take up that option. 
Despite my limited school access before and after my transplant I was still able to achieve my goals within education with a positive determination that I am indeed proud of!!

Message Of Hope!
 This December, is my sixteen year anniversary [this was written in 2004] and looking back I am eternally grateful to Samantha and her family not to mention all the doctors at Harefield for for their continuing dedication and support to fellow Transplants like myself. Despite some challenging times my transplant has given me and many other people years of happiness and long may it continue.....

A New Century, A New Man
I am now a singer/songwriter and was a member of the British Music Academy, I have written for Eurovision with a track called "Come Together", back in 2001 and was later aired on "Radio Merseyside" which was a huge boost. I have also written for a local arts theatre in 2002. It is now 2004 and I'm preparing to go into the studio to lay down some of the tracks I have written including an animated cartoon like track "Where Are You Now" which I hope to pass on to future publishers. 
I am also a keen writer and have written both novels and poems in the past. I have decided to end the story but not the journey with a poem I wrote a few years after my heart transplant, which I hope you enjoy.

HEART TRANSPLANT

No football, no biking,
No running, no hiking,
Bleep goes the machine,
You lie there so weak,
Why is life so mean?

With the oxygen mask,
Life's a uphill task,
Oh donor come fast,
And save me at last.

A donor is found,
Put your feet on the ground,
And jump up for joy,
Life's changing my boy.

Yes to football, Yes to biking
Yes to running, Yes to hiking,
No more bleeps from that-
dreaded machine,
Life is better than ever it's been.

Your no longer wistful-
As you run in the grass-
Thanks to the gift of life,
Your problems may pass.....

This poem was written when I was eleven years old and is dedicated to the lasting memory of my donor Samantha and all who have helped me through the years A BIG THANK YOU TO ALL!!!
And So The Journey Continues.........


Read another inspirational heart transplant story. Thanks to Andrew for his story, reprinted from the website of To Transplant and Beyond, and to Wikipedia for the definition of domino transplant.

They assumed she was demented: Health care at home

Dr. Jack Resnick's story:

I had one 83-year-old patient whose arthritis kept her from moving around, but she loved to talk about her career as a rocket scientist. One day, a well-intentioned neighbor dropped by and called 911 after finding her feverish and dehydrated from diarrhea. My patient had never been treated before at that hospital, and as a Russian immigrant, had no family here for the hospital to contact. She became disoriented; the hospital assumed she was demented and transferred her to a nursing home. It took me two months to track her down and many more to get her home, where, among well-kown attendants and friends, she became lucid again. If she had lived out her days in an institution, she would have cost Medicare a great deal of money, and her life would have been shorter and far less happy.

Patients who are treated at home by a doctor and nursing staff who know them intimately and can be available 24/7 are happier and healthier. This kind of care decreases infections, mistakes and delirium. And it is far more efficient. According to a 2002 study, for the patients treated by the Veterans Affairs' Home Based Primary Care Program, the number of days spent in hospitals and nursing homes was cut by 62% and 88, respectively, and total health care costs dropped 24%.

Thanks to Dr. Resnick, whose article in today's New York Times is excerpted here.

There is a moon shot here: Don Berwick's exit from CMS & the irrationing of healthcare

In my blog post yesterday, I mentioned the sometimes ridiculously high cost of healthcare, and the resulting lack of coverage for many people.

No one wants rationing of healthcare; rationing connotes a period of barely adequate consumption in a time of war. Yet coming from the same root as "rational," rationing is the product from a conscious effort to equally and fairly share a limited resource.

Our high prices create "irrationing." Think of the harm to Deamonte Driver, a boy with a gap in his Medicaid coverage, who eventually died from an untreated toothache, to Nikki White, a young woman with cancer who was denied benefits by her insurer for her pre-existing condition of lupus, and to Natoma Canfield, an uninsured woman whose cancer was detected far too late, among far too many others. That's irrationing; irrational, needlessly cruel and jarringly wrong for the richest and greatest country on earth.

In 2009, Dr. Don Berwick told a biotechnology journal, "The decision is not whether or not we will ration care - the decision is whether we will ration with our eyes open."

Now, as he exited his leadership role over the Medicaid and Medicare programs, Dr. Berwick said, just as Americans supported manned missions to the moon without knowing the details of rocket science, they ought to support the universal health insurance law because of its ultimate destination. "We are a nation headed for justice, for fairness and justice in access to care," Dr. Berwick said. "We are a nation headed for much more healing and much safer care. There is a moon shot here."

Thanks to Robert Pear for his interview in today's New York Times.

An MRI, or a fleet of cars: High healthcare prices

Of the cars I've owned over the years, my favorite was my homely first car, a pale yellow 1976 Ford Maverick with a lime green interior, which I bought, very used, from a good friend, after it had run 113,000 miles. The purchase price in 1985: $325. The car wasn't pretty, but it was rugged, and served me well.

My mother recently had an MRI in an Atlanta hospital as an outpatient. Thankfully, the MRI helped to rule out a serious condition, and she promptly got back to 100% health after a course of antibiotics. The hospital billed her Medicare plan $3,200 for the 10-minute test! The price tag was so high that I struggled to find an appropriate yardstick: it was enough to buy a fleet of ten Ford Mavericks.

When prices are that high, something has to give; not everyone will have insurance that covers such tests, and some will go without care, usually people who lack excellent insurance.

I simply refused: Non-payment for shocking medical bills

John James' story:
When my son died as a result of the poor quality healthcare he received, I simply refused to pay any of the uninsured costs. For at least 6 months after my son died his cardiologists were sending their bills in his name to our home address in Houston. Even after the fact, if the outcome has been less than "advertised" let those who would bill you for poor quality care know you will make an issue of the quality if they insist on billing you.


In another instance, I negotiated some costs with a highly recommended urologist, including the cost of pathology that would be involved. I got his estimates in writing. When the pathology bill came in thousands of dollars over the urologist's estimate, I simply sent a copy of the estimate to the pathologist and said that it would be unethical to charge me more unless he had done something unusual, which I knew he had not. That's the last I heard from the pathologist. I know what it costs to do pathology and the bill from the pathologist was outrageous.

The classic definition of the Yiddish word "chutzpah" [ pronounced "khoots-pah"] refers to a defendant who insists the judge should look favorably upon him because his murder of his parents has left him an orphan. The staff involved in billing John on these two occasions showed exactly that kind of chutzpah.

Read John's draft of The American Hospitalized Patient's Bill of Rights in my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment. Thanks to John for sharing his story with the Facebook group, "IHI Patient Activists." John is a pathologist, and author of a moving memoir, A Sea of Broken Hearts.

MHLAC: Legal advocates for people’s mental health issues

Here are two success stories:

Susan Fendell of Mental Health Legal Advisors successfully represented a woman who sees a therapist several times each week for substantial mental health care needs. The woman’s new health plan was not covering her therapist as her old health plan did because her therapist is not in the new plan's provider network. Attorney Fendell successfully intervened and the new health plan is now covering the woman’s therapy sessions.

Susan Fendell also closed the case of a man needing a prescription medication to treat his chronic mental health needs. The health plan denied coverage for the medication prescribed by his psychiatrist, wanting him to use a generic medicine to which he had had a bad reaction. Attorney Fendell advised the man on the health plan's prior authorization process and now he is receiving coverage for his medication of choice.

Thanks to Susan for providing these stories. If you live in Massachusetts, you can get free legal assistance on mental health legal matters from Mental Health Legal Advisors Committee; call MHLAC Intake at 617-338-2345 x120 on Mondays, Wednesdays, and Fridays from 8:30 a.m. to 1 p.m. You can also email them at intake@mhlac.org

Read the chapter of mental health stories in Ken Farbstein's book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

That would be plenty: LotsaHelpingHands

Barry Katz's story:
There was a room in my house I’d been avoiding.
My upstairs office, where I took off my husband-and-father hat and put on that of cofounder of a high-tech start-up.
For the past several months, since my wife, Carole, had died of ovarian cancer, I hadn’t been able to bring myself to do much work. But that winter morning, watching our teenage daughters, Lauren and Julia, set off for school, I noticed them laughing as they walked to the bus stop. I felt a rush of relief and gratitude that their grief was healing. Maybe it’s time for me to get back to living my life too, I thought.
I turned and headed upstairs. My office wasn’t the neatest. The business was fast paced, and I always had printouts and reports scattered all over.
One thing kept me from chaos: the whiteboard on the wall behind my desk. It was like a giant memo pad, filled with notes to myself, ideas, lists of things to do. It was empty now.
But I remembered how it looked in Carole’s last weeks, when I was struggling to be husband, dad, chauffeur, tutor, caregiver. The notes had been replaced by shorthand phrases, each a task that needed my attention in order to keep our family functioning.
I sat at my desk and exhaled. Last summer should’ve been a happy time. Carole was sick, in her fourth year of battling cancer, but experimental drug treatments had seemed to stabilize her. My business was doing well enough that I could cut back on work and look after her and our daughters.
Mornings I fixed breakfast for the girls and got them off to school. Afternoons I spent with Carole, usually at the hospital for treatments that lasted till evening. Nights I fixed dinner and helped Julia and Lauren with homework. I tried to maintain a sense of normalcy.
We were all looking forward to Julia’s Bat Mitzvah. It was scheduled for October, when she turned 13, the day, according to the Jewish faith, on which she would take her place in our spiritual community as an adult. She would read a passage from the Torah and then deliver a sermon on its meaning.
We had planned a big party afterward for family and friends. A sit-down dinner, each table with a gorgeous floral arrangement. A DJ to get everyone dancing, starting with the hora, a traditional Jewish dance.
Most of the preparation for Julia’s big day fell to me, but that was okay. The important thing was that Carole would be at temple and at the party, that our family would celebrate together.
Then one day in August while Carole was getting treatment, her oncologist took me aside. “I know you have this event coming up in October,” he said gently. “If I were you, I’d move it up.” The cancer had spread. Carole had just weeks to live. I was so devastated I couldn’t respond. It was taking all the energy I could muster to keep our family on an even keel. How would I manage now?
I had to talk to our rabbi and reschedule the Bat Mitzvah. Step up Julia’s Torah lessons so she’d be prepared on her big day. Renegotiate contracts with the caterer, the florist, the DJ. Take care of Carole. Deal with the doctors. Alert all our family and friends. And somehow prepare our girls for what was to come.
It’s is all up to you now, I told myself. You’ve got to keep it together. But I couldn’t, not always. I didn’t want Carole or the kids to see me crack. Sometimes I slipped out the door, drove down the street, parked and let the tears flow. God, I don’t know how I’ll get through this.
Maybe a week after the oncologist’s bleak news, out of desperation I called one of Carole’s aunts. “Can you come over afternoons and watch the kids while I’m with Carole at the hospital?”
“Sure,” she said. “Anything else?”
I was so relieved, I almost started weeping. “That would be plenty,” I said.
Carole’s aunt must’ve burned up the phone lines afterward, because that night my cousin Bob called. “I hear you have to move up the date of Julia’s Bat Mitzvah,” he said. “Write out what needs to be done and we’ll take care of it.” I could have hugged him. I ticked off every item on the whiteboard. “I’ll get the word out,” Bob promised.
The next day help rolled in. A friend e-mailed that he’d deal with the caterer. A neighbor said he’d contact the florist. A colleague volunteered to work things out with the DJ. That night Carole and I came home from the hospital to find a casserole on the stoop with a note from a neighbor: Thought you might like some dinner.
On the day of her Bat Mitzvah, Julia chanted her Torah portion beautifully, then spoke in her sermon of love, of family, of helping hands, of trust. Her eyes fell on Carole, seated in her wheelchair between Lauren and me.
“Today I take my place in a special community,” she said. I looked around the synagogue, at all our family and friends. Why had I thought it was up to me to take care of everything? I’d never been in this alone. I had only to ask for help, and it was there.
Carole died six days later. For a long time the girls and I were shrouded in grief. Then came that winter morning I returned to my office and looked up at my whiteboard. I thought of all the notes I’d written on it in Carole’s last weeks.
What I really wanted to do, I decided, was to make our family’s struggles count for something. I wanted to start a free online service that would help other families overwhelmed by a crisis. In a flash a name came to me, something Julia had talked about in her Bat Mitzvah sermon: lots of helping hands.
I gave up my responsibilities in the start-up to one of my partners, and within a year I launched a website: LotsaHelpingHands.com. It provides a simple way for overstressed families to reach out to relatives, friends and neighbors for help in getting through their day-to-day lives.
Each family sets up their own calendar that shows when and what kind of help is needed (like meals, rides, childcare) and lets volunteers sign up for specific tasks. It’s kind of a digital version of my whiteboard, but a lot better organized.
We have been online for five years now and helped more than 25,000 families worldwide through tough times that no one should have to face alone. And as I was so powerfully reminded the day of my younger daughter’s Bat Mitzvah, none of us does.

Read another story about Lotsa Helping Hands. Thanks to Barry Katz and Brooks Kenny for this story, reprinted from LotsaHelpingHands and the February 2010 issue of Guideposts magazine.