Inscribed at the New England Holocaust Memorial in Boston, Massachusetts:
"They came first for the Communists, and I didn't speak up because I wasn't a Communist.
Then they came for the Jews, and I didn't speak up because I wasn't a Jew.
Then they came for the trade unionists, and I didn't speak up because I wasn't a trade unionist.
Then they came for the Catholics, and I didn't speak up because I was a Protestant.
Then they came for me, and by that time no one was left to speak up."
Martin Niemoller
Though only able to attend part of the The Quality Colloquium at Harvard, I spent the few bucks I had to get there for the time I could afford because its topic (patient safety) is just so very important. Ever since my son lost his given name and became "adverse event/medical error # (pick a big number)", well meaning family, friends, and colleagues who have listened to just a portion of his sad story have innocently and ignorantly offered, "I hope you can find some peace." So, true to form, I went looking.
The talks in Cambridge focused at times on what a patient/family who endures an adverse event/medical error is searching for from the healthcare establishment post event. Some words used to define the missing link were accountability, closure, retribution, knowledge, transparency, acknowledgement. There are others. All these words contain distinct connotations and emotional overtones unique to the individual's perspective. A patient's view is different from a Risk Manager which is different than a nurse, different than a physician, different than a hospital administrator. Who's point of view is correct? Is there one? What is taught in my preschool classroom has merit here: Every individual is important and without considering the view of one the view of all is incomplete. (In preschool it is simplified to 'Each one counts!')
In my humble opinion all these can be surmised in one very big, yet small, word - peace. There is nothing that can disrupt a life more than entering into a war, whether a cold war (stonewalling) or an active one (litigation). Relatively new to healthcare safety discussions, my two exposures in the past 4 months to large gatherings (NPSF and Harvard) of stakeholders, review of professional literature, and personal experience maintain two strong underlying themes. Communication. .......and sadly, skepticism. Successful communication has one essential element that both parties MUST engage for communication to even be possible, let alone successful - acceptance of the possibility of being wrong.
Dr. Clancy wisely pointed out to her audience Monday morning that AHRQ knows the 'what', the challenge is figuring out the 'how'. I don't aim to repeat what so many professionals already know. Nor can I argue the complexities and enormity of the task for patient safety. Rather, I would like you to know how I, one family member, attained what I not only wanted but desperately needed. And it didn't require government, legislation, systems change, or an EMR (though they could have helped my son). To start - reread Dr. Lowns' decade old "The Lost Art of Healing". In encouraging this read, I am not admitting to understanding or agreeing with all of his positions. (For instance, Dr. Lown discusses at times withholding information from a patient because he surmises it would cause more harm than good. Then also argues in the book that it is a disparity in healthcare that there has been an incredible amount of progress in the past 50 years yet a growing discontent from consumers during the same time frame. How can patients appreciate what they are hidden from?) I am after all not a trained medical clinician, lawyer, business executive, plumber or electrician. When I need guidance in any of those specialties I search for guidance I can trust. However, the book's overarching theme of returning medicine to the relationship between doctor and patient is vital to save a patient's life and the doctor's livelihood. Dr. Lown 's 50+ yr. career is a testament to it. The more that muddies the waters between these two parties the more struggles will continue for all. His mother's traumatic death is testament to that.
Currently, because of successful implementation of legislative changes in medical malpractice (in PA the number of medmal lawsuits has decreased substantially since laws were passed in 2002 to restrict claims to the county in which harm occurred), defense attorneys are filling in the gap for cases they no longer have by deposing patients and families for 8+ hours. They ask things in deposition that have already been shared via Interrogatories. Settlements, mediations, arbitrations are not attempted until days/hours before trial. The insurance industry (at least in PA) promised its insured docs in 2002 that once the flow of filed cases were significantly clipped, the liability premiums would drop (or at least stop growing). This has not happened. As a matter of fact, a surgeon in "high risk" practice for 25+ yrs with no cases ever filed against him faces liability insurance in the six figure range. He has plenty of work since his partner and many others have left the area or the practice. So little time remains for his growing family. Vacations? Not sure if he has had one in years. We will all be patients of such overworked, underpaid providers.
In the week before going to trial I was offered a settlement deep in six figures accompanied with a confidentiality clause. My response was to request five minutes with a particular defendant and attorneys costs. Costs that had to be incurred for me to receive the answers the hospital would not give. Costs that the plaintiff’s attorney must incur to file the mandated partner to a medical malpractice civil lawsuit: the certificate of merit. With a signed Contingency Agreement, my attorney and firm promised to cover all costs and would only be repaid if there was a financial award. My counter-offer was unacceptable. We went to verdict. There was worthy argument for mistrial and strongly-worded encouragement from the judge to appeal. I applied the brakes. After jumping through nearly six years of hoops, I found a little bit of peace very simply.
I, of course, had to insure that all legal action was behind us - and then - on a sunny summer day, there sat a mother and her son's doctor absent any fanfare. A plaintiff and defendant. Talking. We both attained some peace that day. In a strange twist, I am now grateful for this doctor....and remorseful that it took so long. I am also appreciative and in awe of my lawyer who fought long, hard, without compensation while incurring steep costs just so I would find some peace. The road Doc and I had to travel was arduous. And no, I may not agree with all his points of view, nor he mine. However, we are on more of the same pages philosophically then one could imagine. I am open to being wrong so that I may hear the other view. My son, quite unknowingly, gave his life to forward the mission of patient safety. I can give a little of my pride. There is a shorter road and it would save money, lives and professions. Perhaps, naive and simple-minded. However, simple is usually the best way to the safest, most significant healing. Dr. Semmelweiss found that a long time ago in discovering how someone so dear to him died.
PEACE in Healthcare will need the coordinated risk taking and trust of doctors and patients to re-direct those who are supposed to be safeguarding these parties (risk managers, hospital administrators, and insurance executives) to make available the option of a doctor/patient(family) non-discoverable meeting that will not remove any legal rights from either party. Appropriate counseling, emotional and professional support before and after a private meeting between patient/family and provider - with no one else present. No legal representation during the conversation for either. It holds the potential to reduce the number of physicians facing claims, encourage positive changes in defense law, redefine risk management, rewrite liability policies and most importantly, put control back in the uniquely patient/doctor relation ship.
From 2000-2002, many states (including PA) had doctors marching on state capitals and some patients picketing across the street. Clearly that tactic was unsuccessful for both parties. The AMA membership is large. I hazard to say the membership of those who have suffered medical errors/adverse events is much larger (IOM '99). These two groups working in union would have great power to stop being the pawns in someone else's chess game. I have sat next to a variety of physicians from all corners of the nation and from all specialties that are interested in renewing a respectful relationship with their patient. It has been an honor to speak with all of them. I appreciate their willingness to listen, allow my questions, and share their point of view. It is also an honor stained with tears when I speak to another patient or family member that has suffered.
PEACE in Healthcare returns the power to patient and provider directly. Patient and provider are encouraged during the course of treatment and before any invasive therapies or treatments to engage in open dialogue. Patients are instructed to ask their provider: “If something does goes wrong in my care, will you agree to meet with me or my family member within 72 hours after any adverse unexpected outcome and explain what happened as far as you would understand at that point?” Providers are instructed to answer positively. The patient’s question concretely displays understanding of the inherent risks that many assume are so low in percentage. Yet, per the IOM report of 1999, To Err is Human, the risk is actually much greater. Furthermore, providers are encouraged to return the trust placed in them by remaining in contact with a patient who endured any adverse, unexpected, or mistake in medical care. There are several national and state organizations of peers and patients that can guide this renewed patient-physician relationship. PULSE of PA aims to be one.
At lunch in Annenberg Hall, the attendees were treated to a moving film of medical error victims. As it was to begin, the audience was encouraged to come to the front of the hall for better viewing and appreciation of what they were about to see. Dr. Thomas Delbanco of Harvard's Medical School invited, "Please one person stand, move forward and others will follow."
James helps me move forward.
Mary Ellen Mannix, Chapter President
PULSE of PA
initiating PEACE in Healthcare
August 21, 2007
