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.