Reports Give False Hope

Don't Let Reports Fool You

Don’t let reports of hospitals doing poorly cause you false hope that you are automatically safe if you use another hospital. Newsday December 23, 2014 

We know that as well as bad things happening in hospitals, lives are saved each and every minute of each day.  But, I don’t want to take away from even one life being cut short because of a medical error, hospital acquired infection or unplanned outcome.  Reports that a hospital has lower ratings than another gives reason for leadership to pat themselves on the back – but even in the “best” hospitals people have bedsores, die from infections and can be given the wrong medication.  Even if they don’t make the news.  To let our guard down even for a second is a cause for concern.  

Never had a car accident?  So should you stop wearing your seat belt?  Cancel your insurance?  No.  We must use these reports only as an opportunity to continue the conversation, recognize we aren’t where we need to be yet and continue the education and advocacy that was started long ago.  This report is screaming that PULSE of NY is important and patient safety groups need to step it up a notch and work closer where the problem is – in the hospitals and at the bedside.

Understanding HIPAA

HIPAA, So Misunderstood

HIPAA does not mean your clinician cannot share information with your family.  HIPAA does not mean that a doctor cannot share your information with another clinician.  Many of us, as well as the people who work in healthcare do not understand HIPAA.

Health Insurance Portability and Accountability Act of 1996 (HIPAA), provides protections for individually identifiable health information held by covered entities and their business associates and gives patients an array of rights with respect to that information. At the same time, the Privacy Rule is balanced so that it permits the disclosure of health information needed for patient care and other important purposes. 

If I do not object, can my health care provider share or discuss my health information with my family, friends, or others involved in my care or payment for my care?

Answer:

Yes.  As long as you do not object, your health care provider is allowed to share or discuss your health information with your family, friends, or others involved in your care or payment for your care.  Your provider may ask your permission, may tell you he or she plans to discuss the information and give you an opportunity to object, or may decide, using his or her professional judgment, that you do not object.  In any of these cases, your health care provider may discuss only the information that the person involved needs to know about your care or payment for your care.  

Here are some examples:

·         An emergency room doctor may discuss your treatment in front of your friend when you ask that your friend come into the treatment room.

·         Your hospital may discuss your bill with your daughter who is with you at the hospital and has questions about the charges.

·         Your doctor may talk to your sister who is driving you home from the hospital about your keeping your foot raised during the ride home.

·         Your doctor may discuss the drugs you need to take with your health aide who has come with you to your appointment.

·         Your nurse may tell you that she is going to tell your brother how you are doing, and then she may discuss your health status with your brother if you did not say that she should not.

BUT:

·         Your nurse may not discuss your condition with your brother if you tell her not to.

You may want information kept private - but it isn't always about HIPAA.  Privacy and ethical behavior can’t be disputed, HIPAA can.

Before your next medical appointment, read about HIPAA here:

http://www.hhs.gov/ocr/privacy/hipaa/understanding/index.html

Patient Safety Education; You Need PULSE of NY

Why You Need PULSE of NY

In a recent 30 minute presentation about patient safety I began to talk about the difference between a healthcare proxy and patient advocate.  A woman in her later years shot her hand up and said “you need to have a friend who knows information about you in case you can’t speak” she told a room full of her peers.  It was apparent as we continued the dialogue that she didn’t know what a healthcare proxy or advance directives are.  We often assume people know what we are talking about.  Patient care is a perfect example of language that is misunderstood and too often the receiver of the information is too intimidated to ask or feeling overwhelmed.  They also may think they know information but until it’s time to follow instructions of a care plan – possibly like taking medication, they realize they don’t understand.

“Do you think that a patient’s bed rail needs to always be up to avoid falls?” I asked explaining that falls can cause serious injury and may add as much as $13,000 to a hospital stay.  When most of the audience nodded, I explained how a patient, no matter their age, may try to climb out of their bed and this could be tragic.  When visiting a friend in the hospital, if you know they may have fallen in the past, be sure the nurses know.  “If you see a star or sometimes a picture of a slipper on the door” I explain, “do not encourage the patient to get up”.

The presentation I cover is about some basic topics costing healthcare billions of dollars each year.  Falls, infections, literacy, medication and surgery also known as F.I.L.M.S. is the basis of the presentation.  Other important topics are advance directives, communication for the best diagnosis and record keeping.

At one community program, audience members admitted that when discharged from the hospital, they left without understanding their next steps.  Should they go back to the surgeon, their family physician or not at all?  If they didn’t understand their medications they were given, some people have told me they wouldn’t get a prescription filled.  Understanding before getting surgery that there are people to help in the hospital with questions or concerns might keep someone from being readmitted because they didn’t understand their care plan.

Most people are annoyed that they are asked on numerous occasions their name and birthday.  When learning that this may help reduce errors, participants are encouraged to be sure every person who treats or transports them asks for 2 forms of ID and agree that now they will expect to be asked.

Choosing your advocate needs to be done before an emergency strikes.  Will your helper be non-English speaking, over 95 years old and unable to hear with limited sight?  Will your advocate or helper be someone who loves you so much they can’t think straight and cries continuously when your clinician talks to you about your cancer diagnosis?  

Listening skills, communication examples and fun interaction can turn patient injury into a celebration of care going right.

Patient safety is not about us – or them.  It’s everyone’s responsibility to be part of the team working around the patient for patient centered care.  We all need to work together to keep a patient safe; friends, family and medical staff.  It’s time the information about patient safety comes out of the hospital walls and lands in the laps of the public so changes can happen.  If you’re looking for a community presentation that can last 45 minutes to *6 hours, call (516) 579-4711

*The PULSE of NY 6- hour workshop is a certificate programs.  Fees may apply

http://www.pulseofny.org/

Another Set of Ears

Speaking in Plain Language

When I went to see this young man I arrived at his mother’s hospital floor before him.  We connected through a mutual friend who thought I might be of some comfort or helpful.   It was almost 10:00 AM and I was running late.  Respectfully, I waited outside his mother’s room until he arrived.  I have learned to stand in one spot, barely moving when I am visiting someone in the hospital.  Being respectful and aware are the two most important things to me.  My phone vibrated and he was calling from the lobby.  Visiting hours start at 11:00 AM.  I looked at the hospitals website before my visit.  He said he was downstairs waiting for 11:00.

“Visiting hours” I told him, “are for other people.  It’s not for you.  Hold your head up high and walk past the sign.  Act like you are a man in charge.”  Minutes later the elevator door opened and a tall handsome young man walked out already in a sad place and now feeling even more vulnerable.  My job was to help him feel empowered while not taking any more of his power away.

He introduced me to his mother who was unresponsive and at the end stages of cancer.  The mask on her face, when removed to offer her sips of a drink, caused her saturations to drop frighteningly low.  He did not want his mother to have the discomfort of this mask on her but the other masks weren’t working.   We immediately started writing down the things he wanted to talk to the doctor about.  The mask, her diet, her medications.  As he thought out loud, I wrote his thoughts and questions in a notebook I brought for him to keep.    He pulled out a notebook and started writing too.

When the doctors came, along with the young students in tow, the conversation turned to hospice and palliative care.  It was 10:30 in the morning and before visiting hours.  I now realized why the family never had a conversation with the doctors in charge of her care.  By 11:00, they would be long past this room and on to other patients.

The attending physician told us that the palliative care team would be in to talk to him about his mother’s care sometime today.  I asked the overwhelmed son if I may ask a question. “Sure” he said.   “Does this mean he cannot use the bathroom, have lunch or leave the room because he may miss the team?”  I asked pointing at the young man standing over me?  “He has been waiting 5 days already.”    The doctor went into his jacket pocket, pulled out a phone and called for the team to come up.  Minutes later the doctor came with the students again following.

The kind and gentle physician who oversaw this department explained that to make her comfortable they would give her medication so she can rest comfortably and take the mask off.  The conversation lasted less than 10 minutes.  The physician asked what the son wanted to do and we requested the doctor’s contact information so he can decide.  I asked if I can ask a question and when the son said “yes”, I asked the doctor so the patient’s son could hear clearly, “Are you saying that if you removed the oxygen and gave her medication to rest comfortably, she will die?”  The doctor looked at me, at the son and back at me again and said.  “Yes”.

Now, he can make an informed decision.  Family was called, arrangements were made and she passed peacefully the next day.  Her children hopefully, can live with no regrets.  Rest in Peace

Ebola is Worse?

Lessons from Ebola

People come into this country with Ebola and we see professionals wearing hazmat suits to treat patients because Ebola is contagious and deadly.  90,000 people die from hospital acquired infections each year in this country and we are still asking medical professionals to wash their hands.

Take Control of Your Care

Be in Control

 

At a recent program, a woman said her doctor is making her take medications that she doesn’t want to take.  Another patient said that she was kept in the hospital but she didn’t want to stay. 

Too often patients think they are being forced to do things by some implanted learning that they are not in control.

“If you don’t want to take your medications” I told her “don’t” but there may be consequences; from getting sicker, to losing your beloved doctor who also may say he doesn’t want to care for you if you won’t follow instructions.

After an hour long presentation, I would hope that participants understand that they are in control of their medical care.  Mistakes happen, clinicians may be wrong.  They need to know what’s on your mind.  Why won’t you take your medication?  Why do you want to leave the hospital against medical advice (AMA)?  These are things you should be able to talk to your health care team about.  If you can’t, you need to change who your team is.

One person said she couldn’t imagine going to see the hospital leadership with her complaints.  I asked her why she thought they were so untouchable.  “If you were unhappy at a hair salon or at a restaurant, if you would speak to the manager or owner, it should be no different”.  Complaining or constructive feedback are two different things.  Hospitals want your business.  They want you to tell all your friends how wonderful your surgery went.  If you are not happy, speak up.  If you’re in danger, move up….the ladder to the people in charge.

World Pharmacist Day

World Pharmacist Day - September 25

According to the International Pharmaceutical Federation (FIP), September 25 is World Pharmacists Day.  What a great opportunity  to remember that the pharmacist is your expert on medications - more than the physician, more than your friends and neighbors, it's the pharmacist who is there to answer your questions about medication mixtures, potential side effects and appropriate and proper measurement.

Here are some tips:

·         Use only one pharmacists so they know all your medications

 

·        Don't change the dose or stop medication without consulting with your clinician and even your pharmacist

 

·        You are encouraged to read all labels and inserts but, if you start coming down with new ailments such as an upset stomach, achy joints, headaches or irritability, before seeing a new doctor check with your pharmacist about potential side effects

 

·        After your clinician tells you about your medication, ask your pharmacist.  The pharmacist is more up to date on warnings and new medications

 

·        Your pharmacist can help you with a discussion with your clinician.  If a medication doesn’t seem to be working for you, ask your pharmacist what he / she recommends so you can talk to your doctor about it

 

·        Be sure your pharmacist has in your record all your allergies and any adverse reactions to medications

 

·        Don’t ever be embarrassed to ask questions about your medication.  Whether you are a waitress, hairstylist, postal worker or auto mechanic, we all have our knowledge and skills.  Not understanding when or how to take medication is not something to be ashamed of.  ASK!

 

·       Consider choosing someone you trust to be your DMM, Designated Medication Manager

Don’t forget to visit www.ismp.org for more information. The Institute for Safe Medication Practice (ISMP) is the nation's only nonprofit organization devoted entirely to medication error prevention and safe medication use. 

 

 

Running a Hospital

Running a Hospital

 

I met with leadership in a large hospital and we talked about the work I am doing with vulnerable populations who use the healthcare system, many his hospital.  When I told him that there are stories of medical professionals being less than sympathetic and kind to people with disabilities, transgender patients or young, unwed mothers he seemed surprised.  “Not all the stories are from your hospital”, I explained to him not wanting him to become defensive.  But I knew some of them were.

 

He told me that all of his staff are sensitive and caring to the patients that go to this hospital.

“All of them?” I questioned with my best startled voice without wanting to sound sarcastic.  He paused and said that maybe some physicians were tired after many surgeries but they were all caring. (I wasn’t even talking about physicians).

I then asked him if he visits patients at the bedside and he said he does.  This conversation wasn’t going to work.  It would become a back and forth with him defending his facility and the staff who works for him.  This is, to me, one of the biggest problems in healthcare.  Where medical errors can happen, where there can easily be a breakdown in communication, how readmissions can occur and patients and their families may not be satisfied but not sharing this information because it falls on deaf ears.

If it were my hospital I would be begging for details.  Tell me what you heard, I would be asking, or where can we improve? I would want to know.  Instead our short conversation was about how wonderful this hospital was.  It felt similar to a parent defending their child that everyone else knows is a bully.  I was not saying that this hospital wasn’t wonderful in many ways.  I started out our visit complimenting what I saw and things I have heard.  I understand that he wanted me to know how well they are doing in many areas.  But, I also know that I would have become a bigger fan the next time I got a complaint or call about someone’s safety if I knew that the leadership was ready to listen.

Joan Rivers, My 2 Cents

Joan Rivers, Death of a Legend

I rarely comment on specific cases of medical injury and this won’t be different.  There is usually more to the story than we will ever know and I don’t like to give energy to a situation that the professionals are already reviewing.  But, it wouldn’t be fair if I didn’t comment on the death of Joan Riversjust because I am such a big fan of hers, the press surrounding her death and the fact that her death came 2 weeks before our Comedy for a Cause, Patient Safety isn’t Funny But Laughter is Still the Best Medicine fund-raiser.  She could have been a headliner but patient safety is probably something her family has never even thought of.

Most people who have never lived through a tragedy such as this don’t realize that it is not the specifics of a case that matters, it’s that when someone goes in for medical treatment, they are supposed to get better or at least not worse.  Sure, all procedures are risky but for those of us who have lived it, this public attention of Joan Rivers rocks some of us to the core and trust must start all over again.

The Patient

Are Patients a Burden?

By Ilene Corina

icorina@aol.com

August 2014

The patient was at least 450 lbs. He was very uncomfortable in his bed and due to his medical condition he kept soiling himself. I had to clean him up and change his bedding a number of times. This was the start of a conversation I had with a hospital worker (I will call Pat) about Pat’s day at work.

Pat described how co-workers would pass by this patient without attending to his needs, obviously considering him someone who would take extra time and need extra work, and could even pose the risk of a back injury. Disappointed at the lack of concern from co-workers, Pat treated this patient alone, with the dignity he deserved. “Doing it alone,” Pat explained, “there is more of a chance for me to be injured.” 

Because Pat was working alone, overtime was approved. “I knew there was a good possibility I could be injured,” Pat said. “But that didn’t seem to be a concern for anyone in charge.”

Morale is down in that hospital department and this lack of concern may be part of the reason. It was apparent that the traditional desire of medical staff to care for the weakest and most vulnerable was no longer present.

Pat wondered, “If I were the patient, would I be a too much of a bother for this staff?”

Medical injuries such as falls, infections and medication errors happen at the bedside. This is where patient safety training needs to happen. Medical injury does not happen in the C-Suite although that’s ultimately where staff morale is determined.

Because this patient was not in a private room, this lack of care was not only experienced by Pat, and the patient, but by the neighboring patients and their families. Other staff knew what was happening as did leadership (remember, they told Pat to stay and handle the patient alone). How can this be handled? Should Pat “complain?” Although that is a harsh word, that’s how it will be seen: as complaining. Should Pat report a “near miss?”  “I almost got hurt, or could have,” Pat could write in a report. Who should Pat tell about this experience? The same people who told Pat to stay?  Can’t you just hear middle level management saying, “What do you want me to do about it?”

So here we have it: a patient is sick or injured and vulnerable.  Add to that the other possibilities — disabled, unable to read, homeless, unkempt, drug-dependent, transgender, mentally ill, teen, unwed mother or any other category of “different” — and the sensitivity training is just not there.

It reminds me of the time I visited a woman who was disabled and in the hospital. I was called in by a local agency to check on her safety. They feared for her safety and at each visit the patient told me the staff struggled to lift her, wouldn’t listen to the patient when the patient tried to explain the best way to lift her, and a few times almost dropped her. But the patient feared retaliation if I were to go to management and try to work out a best plan for everyone involved.  Not long after my last visit I received a call from the agency. While hospitalized this patient was dropped, hit her head, and never woke up.

Bedside Story

Are There Any Real Changes?

I walk down hospital hallways narrowed by the clutter of computers on wheels, food and linen carts and staff standing in clusters talking amongst themselves. A loud machine waxes the floors as a man pushes it down the hallway and people barely move out of his way.

I’m visiting a patient who has been diagnosed with cancer, and his family. The prognosis is not good. I was there when he received the diagnosis from a physician eager to start chemotherapy that another physician later said surely would have killed him. Information is constantly being thrown at the patient’s loved ones, who are scared and lost in a cloud of emotions arising from fear, confusion and lack of sleep. Words are often unheard, instructions are a blur.

I remember the doctor telling this recently-married man the bad news — stage four cancer with “nothing” to do but palliative care — and recommending treatment. I asked the doctor, “What do you think he heard after you said he has stage four cancer?” The doctor continued to tell the patient what the treatment options were even though he had strict orders not to share this devastating news without the patient’s wife present. “I need you to sign a consent form,” the doctor told him.

Now the patient is in a third hospital and being treated for breathing difficulties. The medical staff kept telling the patient and family there is nothing that can be done for his cancer. Exhausted from lack of sleep, his wife constantly reminds staff that he is not there for cancer treatment. They had a plan. He is there to be treated for his difficulty breathing.

On each of my visits I notice the standard of care he receives. The only sink is in a bathroom near the window, yet no one ever walks past me to wash their hands. The gloves, closer to the door, were easier for staff to reach. They didn’t wash before grabbing them.

I suggest the family goes for dinner when I arrive. I do not need to be entertained. They go to dinner and I notice that the compression stockings are not connected. One of the visitors who stayed behind with me said that if they needed to be connected, they would be. I knew better. When asked, the nurse says someone “forgot” to hook them up. In the times that I visit, no one ever shifts him. He gets bedsores that the family explains, “can’t be helped.”

The patient is critical and might die soon, but for now, he wants to live. Still, in the 2½ hours I was there one evening, no one washed their hands, no one shifted him, a hose from his breathing treatment dropped on the floor and before I could stop the nurse she reconnected it.

I saw that the antibacterial gel container was taped over. I asked the patient’s family why. “Because he had c-diff,” his wife explained, and the antibacterial gel won’t work on c-diff. I asked if anyone ever washed their hands and the family said “sometimes.” Never while I was there. But I wasn’t there the 24 hours a day that his wife was there. Maybe they just didn’t wash while I was there.

Maybe everyone gets infections in the hospital. Maybe all hospitals “forget” to plug in the compression stockings. Maybe all hospital staff don’t wash. Maybe in all hospitals bedsores are acceptable. Maybe in all hospitals the patient doesn’t need an oximeter on their finger, or staff don’t shift the patient? Maybe all hospitals have cockroaches and the nurses argue over who will be the one to kill it late at night, like this one did. The list is so long.

But the family was happy because the nurses were “nice.” Families of sick patients don’t know what to look for. Hand washing becomes trivial. Families have no idea that the policies and requirements are not being followed: the patient and the family are happy if everyone is nice.

The family probably knows that the patient would have died anyway. I will always wonder what he died from. 

Rest in Peace. 

Deciding on a DNR is Very Personal

The DNR

 

If I had a disease and it would costly to my family, and the people who work in the healthcare system say it’s hopeless today, I might say let me go.  No acts of heroism to pump my body up with chemicals just to “get another few months”.

But as a watch someone who is dying, my thoughts change drastically.  Fight this thing his loved ones are thinking and sharing amongst themselves.  Even though the patient knows how serious his health is, he wants to live.  He wants to be with his new wife.  He wants o play his music.  Giving up means never again.  Shouldn’t we be permitted to put up that fight without others judging?

It’s such a personal time.  A DNR (order that means do not resuscitate) can be changed over and over.  It will be honored.  It’s not for outsiders to judge.  Not for the advocate to have an opinion.  It’s not for the nurses to decide or doctors to decide.  It’s hard enough to want to fight – who knows if there are miracles. Sometimes thats all we have to hope for.

 

Information about the DNR:

NY State Department of Health  https://www.health.ny.gov/professionals/ems/policy/99-10.htm

From Medline Plus http://www.nlm.nih.gov/medlineplus/ency/patientinstructions/000473.htm

I Didn't Know, What I Didn't Know Until Prudential Came Along

I Don’t Know, What I Don’t Know

No, really, I don’t know, what I don’t know.  I have no idea, what I don’t know.  How could I? 

I sat in a Prudential Insurance seminar recently.  There was a free dinner and speakers to talk about different types of insurance.  I was invited by an insurance salesperson, because we were going to meet in a week or so to go over my policy.  This friendly young man suggested I go to the seminar first.  I took my 22 year old son and we went not knowing what to expect but at least we would have dinner together.

As the lecture went on, a man sitting near us yelled out “so what does variable life mean?”  The presenter stopped and explained it.  Then another question and another.  I thought I knew many of these answers.  It never even occurred to me that I didn’t know.  I had thought I knew, but this was an eye opening event.  Not just about insurance but because if we don’t ask questions, because we feel inferior, scared, embarrassed, vulnerable or rushed for time, we lose out on not only not knowing, but making wrong decisions.

I have lots of questions when I buy an air conditioner or stove, or any large or small appliance.  I know what I want when I buy a car but still have lots of questions.  If, at any time we weren’t encouraged to ask questions when purchasing an item, we can leave and go someplace else. 

When it comes to insurance, or a visit with your medical care team, it’s often so intimidating and we just don’t know what to ask.

Patient support groups are crucial for the opportunity to share information and feel safe asking question.  Talking to friends and family might help.  Learn what you don’t know, before you go to your next appointment wherever that might be.

Yes, Prudential got my business.

Questionable Doctor Report

Doctor Information

I am pleased with the recently released report  Questionable Doctors because I am confident that our healthcare system needs serious work  when it comes to patient’s safety.    I just think that the decision makers need a push in the right direction.

On the train, on my way to the NY State Department of Health patient safety committee the day after this report came out, I opened up the local newspaper, Long Island Newsday, and read an article about the wife of Dr. Anand Persaud, a Baldwin physician who improperly issued thousands of prescriptions for oxycodone and other drugs in exchange for cash payments in 2011 and 2012.   Now his wife is charged with criminal tax fraud and offering a false instrument for filing in the first degree.

Prosecutors said Dr. Persaud, an internist, wrote the prescriptions for powerful painkillers during at least 5,800 patient visit and sold prescriptions for oxycodone to undercover agents posing as patients without examining or questioning them.

A July 2013 Newsday article reports New York Attorney General Eric Schneiderman, whose Medicaid fraud unit conducted the 13-month investigation, said Persaud is one of the state's top prescribers of pain pills.  An August 2, 2013 report on News 12 Long Island reported Dr. Persaud is out on $500,000.00 bail.   Then, for almost a year, nothing until I read about his wife yesterday.

Looking at Dr. Persaud’s information on the NY State’ Physician Profile website, www.nydoctorprofile.com Anand Persaud is presently practicing (or could be) with no questionable actions (other than 3 settled medical malpractice cases) The state doesn’t add “under investigation” to their comments.

So one may say, if he is innocent until proven guilty Google your doc to get up to date information – if you even want to know.  

Error or Complications?

Did Something Go Wrong?

The patient was hospitalized for a few weeks following the surgery.   Complications made it impossible for the elderly patient to go home.  When the adult child originally called, it was to talk about the mistake, the pain their parent is having and the complications during surgery which caused the injury.  A call once in a while turned into a call a day, which turned into two calls a day with panic in the voice of a loved one describing the errors made in a parents vulnerable state.

I took the 30 mile drive to visit the family.  Getting there earlier than planned, I was in the room with family when the doctor arrived.  The doctor had an interpreter because neither the patient, nor the adult child there at the time spoke much English.  Assuming that this patient was in the hospital longer than planned because of the injuries caused by surgery and the “young, unqualified” doctor who did the surgery, (as the caller described him) caused severe injuries, I sat back and listened as the doctor explained through the interpreter, the next steps.

Now the family member who was calling me arrived.  I asked the family if I may ask questions and they said “yes”.   I asked the doctor what happened.  His explanation was clear.  The surgery was complicated.  He explained the possibilities of injuries having the surgery the way it was done.  The team cautioned about getting this surgery but the patient wanted it this way.  The family agreed with their elderly parent.  The patient was now recuperating and getting good care, in a private room with a bed for the family members to spend the night.

I asked the patient’s family if they understood that this surgery had complications, probably nothing was done “wrong” but still it wasn’t the best outcome.  They agreed.  I acknowledged their disappointment, frustration and confusion.  The patient was discharged a few days later and is doing fine.  The family is together. 

What Does "I'm Sorry" Really Mean?

An Apology

Is an apology OK if it’s from over 20 years ago? Is it OK if it comes through someone else? Is an apology always healing or meaningful or even necessary?

My friend Rachel, a critical care nurse, who is warm and gentle, passionate about patient safety and patient’s rights, asked me a few weeks ago if I had ever sat down and spoken to the doctor who did my son’s surgery. I told her I hadn’t but the truth is, the conversation I would have had with him has played out in my head over and over again. I spoke to him briefly immediately following my son’s death. He sounded concerned. But that could have been because he was nervous. I barely remember the conversation, but I was happy he’d called. My mother also spoke to him briefly. She remembers the conversation better.

Maybe if I had moved on, continuing my job at the post office instead of throwing myself into the world of patient safety, not knowing what happened to that doctor who was the last to see my son alive and said he was fine, wouldn’t matter. But after speaking to hundreds if not thousands of people who have lost loved ones over the years. I have become haunted, as I know others are too, by questions about what that doctor’s life has been like. Does he think of my son? Have any lives been saved because of him? Did his death ever lead this surgeon to pause and do things differently? I have been confident that I would never get an apology, but just knowing that his life has been affected still matters to me — yes, 24 years later.

I never “blamed” the doctor. I never felt he was the direct cause of my son’s death. After all, we saw four other physicians about my son’s bleeding in the week after his tonsillectomy. None of them picked up on the possibility of my son Michael bleeding to death, or on the infection that ravaged his young body. I always told people who asked that he was a good doctor and a fine surgeon, but something that I will never understand went terribly wrong.

Rachel asked me if she could call him and if so, would I be willing to talk to him. She told me, “I had this vision in my head of the two of you sitting down to say things that you may have both thought over the last 24 years.” I told her, “Of course.” In a perfect medical system, Rachel and I both agree, when things go wrong, patients, their families and the medical team should be able to have a conversation in order to learn what happened, to heal and make improvements. That didn’t happen for me and it’s still not happening for the millions of families affected by unplanned outcomes since Michael’s death. I sent the surgeon a book, Wall of Silence, about 10 years ago, in which my son’s story is described in detail. The doctor never responded. Earlier I wrote him a letter, to which he also never responded. In that letter I wanted him to know about Michael. I realized I would never have an answer to the question: does he ever think about what happened?

Rachel called me this week and casually began the conversation by telling me that she had spoken to the surgeon who did Michael’s surgery 24 years ago. She continued telling me about her conversation, which didn’t register. I had to ask her to go back and repeat it. I thought that call was something Rachel was thinking about but would never be able to pick up the phone to do.

Rachel said the surgeon sounded annoyed at her calling but he stayed on the phone for 25 minutes. She asked him if he would sit down and talk to me and he said “no.”

He explained to Rachel that the hospital directed him as to what to do, and he did it. He now has health issues of his own. The surgeon, now probably in his 60s, told Rachel that he has “hashed” this over in his head.

Rachel told him about my work helping others come to terms with their new lives after an unplanned outcome. The injury or death is actually just the beginning of the patient’s or family’s new life. For years I have been helping people dealing with the guilt of what could have been done differently when they placed their loved ones in the hands of those who caused injury or worse. I have spent time with families facing the trauma and heartache of a medical malpractice lawsuit, encouraging medical mediation, and working on fixing the system through educating patients and their families. Rachel told him I said he was a good doctor.

She explained to the doctor that she wants to work in a hospital where there isn’t blame and mistakes aren’t hidden.

The doctor wished me well, and told Rachel that he is sorry for what happened.

Now I have to wonder, did I finally get an apology? And why have I been saying for years that he is a good surgeon? Was it actually to protect me?

I got my answer, finally, because one person had the nerve to reach out to make a difference.  And that makes a very special person and a very special gift.

What You Can Do to Help

When Somoene is Diagnosed

A friend just told you she has an incurable disease.  Your first reaction is to:

A. Talk about everyone you know who has the same disease and share their stories.

B. Ask what you can do to help.

C. Tell her that you are sorry to hear that.

The answer is C.

When someone comes to you with a life altering event, just being there is often better than asking questions – which is what happens when you ask what you can do to help.  If your friend wants to share more information, she will.   You may want to ask permission to ask more questions.  This will give her the opportunity to say “No, I don’t want to talk about it” or they can open up and share.

Instead of asking your friend what you can do, you may want to instead say “Can I let you know some things I might be able to do”?  When your friend agrees, you can offer some of the things listed that you feel comfortable doing – and don’t let her down.  Make sure you can do it:

·    Research doctors, hospitals and treatments.

·    Help with organizing medications

·    Go to the clinician’s office and take notes, prepare questions and bring information.

·    Organize or help with cooking, child care and family matters

·    Organize bills and insurance information.

·    If she is hospitalized, someone should be with her at all times to make sure she is getting appropriate care, proper medications……………

Delegate, delegate, delegate!   You don’t have to be the person doing all of this but bringing others to support your friend is helpful too.

Find out from your friend who they want as part of their “care team” and start calling.  The people on the list  may say no to you but you won’t be offended.

 

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