Tuesday, January 25, 2011

Sermon, Caring in a Crisis

I never thought of patient safety as a spiritual journey but it can very well be. I spoke last weekend at the First Universalist Church of Southold and my sermon was called Caring in a Crisis, How we can step up to help each other. Following,  is part of my sermon after I told stories of people’s lives who were tragically taken because of their medical care.

"They may all be alive today if the healthcare providers who cared for them took another road in their care. If they were more careful, more thorough or even more knowledgeable. No one meant harm, but harm from medical care is the 8th leading cause of death in this country. More people die from medical errors in hospitals than auto accidents, breast cancer and AIDS combined.

 Patient safety, only in the last 10 years is something that the public has become aware of. Hospitals and medical professionals have been aware of patient safety for many years. 

 As early as the late 1900’ Ernest Amory Codman was known for pioneering what is known as outcomes management in patient care. Codman was the first American doctor to follow the progress of patients through their recoveries. Each patient was followed up on for at least one year to observe long-term outcomes. He believed that all of the results should be made public so that patients could be guided in their choices of physicians and hospitals.

In 1855 it is reported that Florence Nightingale recognized that soldiers were dying from unsanitary conditions and she paved the way for sanitary conditions in hospitals.

In the late 1840's, Dr. Ignaz Semmelweis was an assistant in the maternity wards of a Vienna hospital. There he observed that the mortality rate in a delivery room staffed by medical students was up to three times higher than in a second delivery room staffed by midwives.

Students were coming straight from the autopsy room to the delivery room. He thought that the students might be carrying the infection from their dissections to birthing mothers. He ordered doctors and medical students to wash their hands with a chlorinated solution before examining women in labor. The mortality rate in his maternity wards eventually dropped to less than one percent.

 Now, in the year 2011, the Centers for Disease Control reports that as many as 100,000 people die from hospital acquired infections and as many as 2 million patients will be infected by a hospital acquired infection this year and in years passed.

 So what can we do about it? Talk about it for one. By acknowledging this problem, like any problem we can start to fix it. I dream about conversations about patient safety to be similar to families talking about breast cancer, seat belt safety or safe sex practices.
 How could something so deadly as medical errors and hospital acquired infections be so out of control? Patients and their families only recently have been involved in what’s now called patient centered care and the patient safety movement.

 I began my personal journey to patient safety many years ago when my only child at the time went for what was considered a routine tonsillectomy. Following his procedure he bled for a week and I brought him to different doctors and emergency rooms. Each doctor they said not to worry, he will be fine. 8 days later my son was to die at home, in my arms, a statistic that no one at the time knew existed. He bled to death from a tonsillectomy.

My search for answers on how a child could slip through the system led me years later to national patient safety conferences by the medical societies and hospital associations. The medical professionals knew there was a problem, they just didn’t know, at the time that many patients also knew. I was going to help bridge that gap.

 And now, today, ten years later, healthcare providers have started including patients in patient safety by giving us tips on what we can do.

One of them is to tell our doctors to wash their hands. With the numbers I just quoted, this sounds a bit unreasonable doesn’t it?

It’s a start – its not the solution.

As an adult, don’t you feel it awkward to be undressed on a table about to be checked by the doctor and we are supposed to tell him or her to wash? Isn’t this something that we are taught as young children? Wash before eating, before touching your food and now, we have to tell an adult to wash before treating us?

But, the fact is they don’t always wash. They don’t wash before touching us after touching a doorknob or the clip board or shaking our hand. And yet we know it is supposed to be done and ironically - so do they. So gentle reminders can be seen to us, the patient, as a way to keep us safe and hopefully infection free. It has to be done or we may not be safe!

I sometimes wonder why I feel so disrespected when someone in a white coat doesn’t wash. He knows that infections are a problem, why would he or she then purposely put my life in jeopardy by not using a simple safety technique like hand washing?

But hand-washing is a small part of patient safety. Just as serious is diagnostic errors, medication errors and even falls in hospitals that cost patient’s their lives.

PULSE of NY, is the first grassroots patient safety organization which started on Long Island in 1997 we are credited in books and articles for helping to start the patient safety movement  giving the patient a voice in 1996 – We started at the South Nassau UU Congregation as a support group for medical injury survivors and still meet there regularly to hold workshops and programs.

So, this small group of patient safety advocates which include medical professionals and community members decided we would develop a program that would encourage the family or friends of the patient, to do just that – speak up.

Patients are supposed to have their questions ready. But when the doctor says “You need surgery” or “you have diabetes” or cancer, we can’t as the patient, possibly know what questions we are supposed to be asking. Our heads will spin with thoughts, feelings and planning and easily forget what we are supposed to ask.

 Having a trusted friend or family member in the room and hearing the news with you, or at least immediately following it can help you sort out information, gather your thoughts or share in the shock.

You may be needed to drive her children to school, do the shopping and cook some meals. If your congregation is anything like mine, there’s a whole group ready to help. We can offer sympathy or should it be empathy. What is the difference?

Kerry O’Connell, a colleague of mine involved in the organization called Compassion in Healthcare, a world wide organization located in New Zealand describes the differences in Sympathy and Empathy this way:

Sympathy Can be purchased at Hallmark, Empathy, Cannot be purchased at any price,
Sympathy Given by Many, Empathy Craved by Many,
Sympathy Minimal emotional investment by the giver, Empathy Requires great emotional revelation by the giver,
Sympathy Leaves you indifferent, Empathy Leaves you warm,
Sympathy Brief pain relief, Empathy Lasting Healing,
Sympathy Quickly Forgotten, Empathy Relished Forever,
Sympathy Understood, Empathy Experienced,
Sympathy Offered, Empathy Shared,
Sympathy Abundant, Empathy Most Rare,

Sympathy Expected, Empathy Unexpected,
Sympathy Learned, Empathy Intuitive,
Sympathy Easy, Empathy Difficult,

Sympathy Acknowledges, Empathy Accepts,

Sympathy Mostly Talking, Empathy Mostly
Sympathy Tries to solve, Empathy Relates,
Too much Sympathy can be annoying, Empathy Can’t have enough,

There is a place for people to offer sympathy to one another and a place to offer empathy. But not everyone wants to offer sympathy or empathy. Some people, I being one of them, want to spring into action. I usually can’t sit and feel sorry for you. Give me a job to do to make me feel like I am doing something.We, as a UU community are often willing and ready to be given our responsibilities to help others in need.

 Let’s take the 32 year old member of the congregation who has just told her few closest friends that she will need a hysterectomy and has a 2 year old child bouncing around the house.

Most people will be thinking about how to help her after her surgery. Food will be delivered and offers to babysit that little darling will pour in. But what about planning for the surgery? Whether she has a husband or partner, there are so many things we, as a community can do to help her prepare.

Ask if she needs help researching her doctor, the best hospital to use or what procedure is best for her. You never want to tell her about your surgeries, your friends hysterectomy or what hospital she should use. Even at the so called “best” hospitals, bad things can happen. You want to research the information that’s available.

 Offer to look into insurance, if she needs that, or a doctor who may give a second opinion – if she wants to. Ask about offering to sort out medical records, chart information or accompany her to the doctor’s visits so you can take notes.

Offer to list her medications, vitamins and any supplements she may take. Names of family and friends to call following surgery, a list of all her doctors, allergies and surgeries she has ever had. Help with advanced directives.

 If she tells you something doesn’t seem right, no one is listening or the care she is receiving seems substandard – please don’t use those words that can be deadly – “don’t worry”. Dig deeper. Chances are something is wrong!

As one person wrote to me after we sat at a diner and made the lists; “Thank you, I have used the lists we made over and over again for all my treatment”.  

Another wrote about her advocate that I trained “As a recent widow, I was overwhelmed by the diagnosis and feeling alone and very vulnerable. My advocate accompanied me to my pre-surgical doctor visits and helped me to ask the questions I had discussed with her beforehand. She calmly recorded the various treatment options as they were proposed and was able to discuss them again with me later as I mulled over which treatment path I would take.”
While someone is in the hospital, for those of us who really can’t stay away, but feel awkward standing over the bedside looking at our sick friend in her pajamas, bring a gift basket of antibacterial hand and body wipes, antibacterial wipes for the room and a box of chocolates for the nurses. Then, when visiting wash all door knobs, bedrail, tv remote and nurses call bell. Leave the chocolates in the room so nurses and nurse’s aids and housekeeping must come in to take a treat. Your friends will be flocked by professional care.Ask if the patient has all the information he or she wants from the nurses or doctor. If not, take some notes and help the patient get the information. You can help build that bridge for the patient so he or she can concentrate on getting well.

 So, as we move forward in a world willing to help each other, don’t forget that there are many ways to help and take action when someone else may need us. I hope today I gave you some more tools to help.
Thank you. "


Tuesday, January 4, 2011


About Ted


I have known Ted for most of his life. As a young boy, he was adorable with blond hair and beautiful blue eyes. He was always the quiet one between him and his full of life and mischievous brother, but something would happen to Ted when he would get in front of a microphone. He would sing, recite his own poetry or tell wonderful stories. Ted would light up a room with his sharp wit and charming personality. Ted’s mom, one of my dearest and closest friends raised the two boys on her own. I always admired how she held down enough jobs to just make ends meet but always had time to help someone else in need.

As Ted got older, and reached his late teens, something started happening. We knew he was always on the thin side, the opposite of his huskier brother, and he had trouble with high ceilings, too much noise and bright lights. We all just thought it was quirkiness about Ted that made him different, and in need of some extra attention.
In the last couple of years, Ted struggled to walk. His mom took him for physical therapy and had him diagnosed with tight hamstring muscles. He had a heart arrhythmia and spent the day as an outpatient receiving, at just 18 years old, a heart ablation. His eyes were troublesome and his visited two ophthalmologists who sent him for eye exercises. Then his speech started slurring and his mom realized that there were too many things happening. She saw two different neurologists who would send him for a battery of tests.
I sat with them as a doctor spoke about doing spinal and other invasive procedures. He wanted to “rule out” certain diseases – but why, I wondered, can’t someone just figure out what this is?

Ted’s mom, though exhausted from working full time and visiting doctor after doctor and bringing Ted for eye therapy, physical therapy and taking him out nightly for walks because of his fear that his legs would give out, wouldn’t give up. The final doctor, a neurologist did a blood test, and found that Ted has Mitochondrial Disease which results from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. When they fail, less and less energy is generated within the cell.

Ted’s mom and I talk about why it took so long for Ted to be diagnosed. Was he being “mis” diagnosed?  Was there a breakdown in communication?  Why couldn’t the ophthalmologist find the problem or the first or second neurologist?  There is so little that can be done for Ted. He works hard to keep walking and is determined to stay out of a wheelchair. He is a brave young man who is fighting with every breath he takes. Ted wants to be independent but accepts help, and even seems to, at times, enjoy the attention. It makes it easy to love him. He allows us to love him. He has taken up a piece of my heart with every deep conversation about his future he allows me to look deeper into his soul as well as my own.

I keep thinking that it was his mom who pursued a diagnosis. He would have been dropped if not for the work she did to keep records together and compare notes. Ted’s pediatrician didn’t do that. It is up to us, the patient and the patient’s family or even friends to step up and help or we would all get lost in the system that would gobble us up and spit us out like another number we pull out of the machine at the deli counter.

Ted is teaching me about love and about life and about what is really important. The people who come through our lives each day all carry baggage but I find my mind constantly distracted by Ted’s future and what tomorrow will bring.
Meet Ted Here