Another Kind of Hospital Advocacy

I have had the opportunity to accompany many people through their doctor visits and hospital stays. Each time I am permitted to take this journey with the patient and / or their family, I treat it as an honor they have bestowed upon me. After all, I am not a medical professional. I never went to school to learn medicine, medical terms or alternatives to medical care. I am there to support and advocate for the family and the patient to help them with that bridge from confusion, fear, loneliness, embarrassment and, of course, harm. For this I have trained for over 10 years. I want what is best for the patient and being alone or with someone who may not act as an advocate, is usually not what is best. Family should love the patient. I will quietly sit (as someone recently described my services) in the background and be there when and if I am needed to assist in the course of the patient’s safety. No one, in my perfect world, should ever be alone in the hospital but being the “right” person is important too.

Nothing has opened up my eyes to the healthcare system as this experience with William. I will call him “William” or “Will” because for those of you who know me well, you will probably know who this story is about. For those of you who do not know me well, it doesn’t matter who Will is. I have Will’s permission to tell his story. It is important. I have learned and am proudly always learning from the people whose lives enter into mine but Will is special, for many reasons.

Will is in his forty’s, handsome, gentle and very funny. He dresses well and has many friends. He is athletic, active and busy with his work. Will goes to school to advance his education and volunteers for the community ambulance corps. Will works as a technician in a heart hospital. He gets along well with his colleagues and is well liked. He is sensitive to his patients needs and his gentle kindness follows him from patient to patient.

Now Will needs surgery. He goes for the pre-op exam and is very aware of the staff’s discomfort but he tells me “they are respectful and kind”. At the doctor’s office he sends me a text on my phone that he hates it there. He doesn’t like to be alone. I wish I would have gone with him. I feel now like I belong with him through this.

Will, to many people, is different. He is going for a hysterectomy. Not too many men have hysterectomies but then again, not too many men are born with a female body. To look at his face, hands or masculine physique, you would not know he was born a female and only recently began his “transition” as he calls it. He sometimes comments that he is different, but do we really know how many people were born this way?

Allowing me to be part of this experience with Will has opened my eyes to places I have never before explored. As his friend and advocate, in this experience, I will be more observant about privacy, prejudice and different, possibly unusual needs that have not been addressed. He looks and sounds like a man but his ID bracelet says F for female. Would anyone question the possibility that this is in error? How does one explain this in a shared hospital room?

Is staff trained and sensitive to the growing needs of the transgender community? Are patients asked about their own modesty before being asked to disrobe – male or female?

I am no more concerned about Will’s safety than anyone else’s but I am focused on new things to help him (us) through this. I am lucky to do what I do and even luckier that people like Will can slip into my life almost accidently. And on a personal note, I will be hoping that the next surgery Will gets, we will all be rejoicing together.

Doctor Suspended

This past week, a local hospital made the news when we learned a $7 million a year surgeon was suspended when he left his patient on the table before surgery and then could not be found. I received some calls and e-mails about this episode and everyone has an opinion.

I have learned, sometimes the hard way, not to publicly ever comment on a specific case. There are always 2 sides to every story and most of the story is not reported. It just doesn’t make the paper.

Some say it is wonderful that the hospital suspended the doctor involved. Other comments I heard were, “the doctor probably did other things wrong” or “the doctor probably had an alcohol or drug problem”. Of course there were comments about all the lives this doctor has saved before this unfortunate event, or series of events.

Should we be concerned at the high amount of money this doctor was making? Can it be relevant to thinking he is now untouchable? He is still making less money than some ball players but what about the stresses that go along with his work?

The papers only touch on the lawsuits that have been started by other patients who have been harmed. Are the procedures so difficult that there was a chance of harm to begin with? Are the patients who have been hurt, being cared for by another doctor making $7 million?

It is easy to say that the doctor, who probably did wonderful work should be reinstated but what support services are available for the patients and their families who have suffered – even slightly? Has anyone had a conversation with them about their needs, concerns for safety and trust? Or, is it only about the lawsuit and holding the health system accountable?

I want to believe that the system acted appropriately; that the families have a right to be angry. That everything is being done fair and we will all live happily ever after. But when the stories like this make the paper, there is just so much not being reported, and that too is no one’s fault.

Can we feel safer in the hospital now if this doctor isn’t there? Probably not because what about the stories that have not yet been reported?

NPSF Patient Engagement Day

My heart fills with pride. One of my favorite places to be is at the NPSF congress each year. The staff are warm and welcoming and the same people have been participating for years. It is the difference in being at a large stuffy party or in a smaller cozy atmosphere. I didn’t stay for the entire congress. I am so sad that we are not budgeted for expensive hotels but I was glad to be able to go for the one day. Patient Engagement Day brought together over 30 people of all different backgrounds; patients, families, doctors, nurses, quality care specialists and probably more from all over the country. I travel a lot. This was the first time I was sad to come home.

In a room together we were sharing our information and helping each other grow. A gentleman heard my presentation last year and brought it home to his hospital to get the patients and families going in patient safety. How flattering that he shared my work. Others shared the work their doing in hospitals. Others are trying to get started.

Unfortunately I feel sadness that I had to fly to DC to sit in a room of people with diverse backgrounds and talk about patient safety. On Long Island I fear it may never happen. This was not like a “speech” to this group. This was the real working group like we put together at PULSE but we have no hospital support here. No medical institution has supported our work but now I learn in other parts of the country our work is being shared through others. Some say it is “just New York”. Maybe. But if our goal is to teach patient and family partnership with the healthcare system, why is it demographical? Why isn’t every community ready? I am confident that we can move each health system and hospital forward to engage the patient and family in patient safety. Maybe everywhere but New York?

Mother's Day

Mother’s Day, it’s a bittersweet time. I look at my two teenagers and count my blessings. Not today, but every day. The almost perfect teenage boys who I have so much emotional attachment to I can’t believe how I swell with pride and happiness when they step into a room.

Steven was born following Michaels death. He made mothers day following his birth a time once again to rejoice. The sadness over Michaels death didn’t disappear, as I am sure so many people would have hoped would happen. It just made priorities change and brought happiness back to my life.

A year later, on the Friday before Mothers Day, I went into labor with Matthew at just 23 weeks gestation. Knowing it probably would not have a positive outcome, the young doctor told me my choices of allowing Matthew to die peacefully at this hospital where they were not equipped to treat him, but I spent 5 days there already. Or, we move to a hospital where he may have a chance but the outcome could be awful and he may lead a difficult life. I chose the latter.

Today Matt is a healthy teenager. Following his birth, I witnessed the miracles of medicine and the struggle people who work in healthcare go through to do the right thing. Mother’s Day weekend was a difficult time. I still feel sadness at beautiful weather. The first sunshine that falls upon us each spring reminds me of the trips to the hospital to visit Matthew during the summer he spent in the dark, cold hospital.

I had the opportunity to spend 5 months with the nurses and doctors who cared for him when I couldn’t be there. They gave up their Mother’s Day, Father’s Day and all the holidays throughout the year to help the children they cared for.

Yes, I know the miracles of medicine and live with that every day. Thank God..

Garbage, Garbage Everywhere

At a recent patient visit at a Long Island hospital immediately upon entering his room, I saw garbage on the floor all around the garbage pail. The room was messy and the patient disheveled. I was a bit taken back and thought that maybe it was early, but his lunch tray had already arrived.

If this patient was cleaned up for the day and was going to have his lunch, than maybe the nurses and aids are overworked and have a large case load of patients.

I looked in a few other rooms and also saw the garbage pail overflowing and papers on the floor. It wasn’t the first time I saw this. One time I wrote to the hospital about the condition of the patient’s room. But that was on a Sunday. This wasn’t a weekend and I had to wonder why the custodial staff were so backed up. I have seen this more than these two times. This had to be a “safety” issue but obviously wasn’t on the top of anyone’s list.

Then I began to wonder to myself, why is it the custodial staff. Why can’t everyone just get the garbage into the pail or pick it up if they miss?

Another Hospital Visit

A patient, showing “flu like symptoms” spits on the ground on his way into the emergency department of a local hospital. A visitor there to see a surgery patient unaware, steps in it and now stands next to the bed of the patient after surgery. The visitor, looking for a place to put her oversized pocketbook lays it on the floor to avoid making the bag an inconvenience during their visit. Ready to leave, she lifts her bag from the floor, puts her hand under it to hold it close and then leans over to kiss the patient goodbye, placing the same hand from under the bag on the rail of the patient’s bed.

Sound strange? Maybe, but surely not impossible.

I am sure I touched the patient’s bed rail more than I wanted to at a recent hospital visit even though I didn’t touch the patient. I also watched the nurse who was about to examine the patient’s wound following a procedure touch the same bed rail while in conversation with the patient and his mother. So, when she lifted the blanket to examine the wound, I was pretty surprised when I asked her to wash her hands she said “I did already” and immediately placed her hand over the bandaged area.

I am not paranoid about infection, although I know my own son had one when he died following his tonsillectomy. I do know, I will never know how he got it. But I am aware, because of the rate of infections, that there are many things we, the patient can be doing to help the patient stay safe. One of them is not putting our bags on the floor, touching the bed rest without washing and gently asking someone who is about to examine the patient, to wash. But hospitals are still not listening.

-Hospitals and healthcare organizations are not “formally” training patients to act and react.
-Healthcare workers are still put off by a simple request like please wash.
-And still there are no signs available over the patient’s bed to encourage patient and family participation.

I am sure I would not have been as concerned if two of the antibacterial hand sanitizers in the patient’s treatment area weren’t empty when I tried using them.

The Stimulus

I went to a meeting yesterday hosted by the Nonprofit Coordinating Committee. Thank goodness for organizations like this that have seminars and programs for nonprofit organizations. They offer information, advice and resources to organizations in NY at no charge (accept a small membership fee). The opportunities to network are valuable too.

This seminar, “Managing in Hard Times: Effect of the Federal Stimulus Package on New York Nonprofits” is part of a series.

The panel explained how the money will be divided up between the different areas. My concern was the billions going into healthcare.

The US Department of Health and Human Services, Agency for Healthcare Research and Quality, (AHRQ) has information for patients and families. AHRQ reports on their website that: “the single most important way you can help to prevent errors is to be an active member of your health care team.”

But when I asked the panelists at this seminar what the plan is to fund programs to help make patients and their families more involved in their healthcare, the first panel, from NY City programs said they will have to get back to me.

Money from the US Health and Human Services is going towards IT. Electronic Medical Records is important for patient safety. But, it surely is not all there is.

Additional information found on the AHRQ website is that “medical errors are one of the Nation's leading causes of death and injury. A recent report by the Institute of Medicine estimates that as many as 44,000 to 98,000 people die in U.S. hospitals each year as the result of medical errors. This means that more people die from medical errors than from motor vehicle accidents, breast cancer, or AIDS”.

The US Department of Health and Human Services is acknowledging that patient’s safety is a big problem. But, medical records is not the only problem:

“Doctors often do not do enough to help their patients make informed decisions. Uninvolved and uninformed patients are less likely to accept the doctor's choice of treatment and less likely to do what they need to do to make the treatment work.”

So how do we fix this problem? Funding needs to be allotted to educate patients, train advocates and empower the public with information.

The second panel, all from Albany, many representing the governors office were asked the same question. I wanted to know what they were going to do to be sure the public is aware of their role in patient safety and reducing medical errors.

Their response: We’ll get back to you on this.

Hospital Posters

I walked through the hallways of a Long Island Hospital on my way to visit a patient and noticed that this long hallway had some signs hanging up about patient safety.

I was looking at what the large framed posters were about and the word “medication” caught my eye. I stopped to look at the rest of the posters and there was one on preventing falls, anesthesia safety, infections as well as medication safety. I was pretty impressed with these posters but also realized that anyone walking through this long corridor was probably not going to stop to read these posters.

So, I did what I’m sure anyone would do, I visited the lobby, waiting areas and patient hallways to see if there were any additional wall hangings where people would have the time to read them. They weren’t there.

I wonder why these wouldn’t be made smaller and put in every patient’s room. It only makes sense that these notices are to protect everyone – the patient and the staff. It’s so much easier asking about the medication or understanding how falls happen when it is in our face. Signs and posters like these give the patients and the visitor’s permission to be involved. When the staff and the patient are seeing the same information, that’s how a partnership forms.

Patient Safety Commitments

Now it’s Twitter. What the heck is Twitter you may wonder unless you already Twitter. It seems, in case you want everyone on the planet to know what you are thinking every minute of the day, you can now write about it. I don’t, who has the time? I have to make calls to the state trying to get our funding released. Our senator, who graciously promised us funding says it’s the governor holding back the funding. The grants department says it’s the NY State Department of Health. None of them, so far return calls. I have to try to get the people who make promises or verbal deals that they will support our work, to answer their phone, return messages or acknowledge that in public, they shouldn’t make commitments that they can’t keep. Words are cheap and free.

I still have to return calls of patients who have been injured and to the families who lost loved one’s from preventable medical errors that they can, in fact use the American health care system and feel safe (although I can never say that because in reality, they shouldn’t).

I am spending time helping patients research doctors and hospitals, combine all their medication lists and research why their bills won’t be paid from hospital acquired infections. I have heard in the last few months from people who have suffered bad outcomes recently, long ago and who just want to share their story or want some serious help – yes, sometimes financial.

Now my priority is - can we afford to buy ink for the printer? Can we pay someone to update our website. Where can we get the most inexpensive hand outs printed up and shall we use the fax for fear we may not be able to pay for the bills?

Running a grassroots organization is time consuming and usually very fulfilling. The part that is painful is that it takes money to do this. It’s not a lot. I am proud that our budget is so low, that once when I was at a training, and groups were splitting up by budget, they didn’t even get to under $100,000.00. I had to request that we are recognized. Donations are so welcome. It helps to buy the ink, pay the phone bills so calls can be returned and mail patient safety information to the many people who still do not have internet access.

I hate the thought that so much time is spent on looking for funding. It doesn’t seem important that the ink is low and the paper is empty. What bothers me is that people who make commitments to patient safety and the community’s participation don’t come through.

Soon I will start naming names.

Inside a Long Island Hospital

A local newspaper did a 24 page article on a local community hospital. Giving a health writer full access to the facility for a week, this reporter brought to the community the stories about what it is like in an emergency room, treating sick or injured children and adults and the different life saving services available.

By being this transparent, I can only guess that the hospital CEO was looking for some sort of sympathy to the funding cuts or, in some cases, show the community how much work goes into running a hospital.

As a family advocate for safe care, I thought this idea was brilliant. It wasn't until I spent 5 months in neonatal ICU with my son following the death of my first son from a medical error and a year as a volunteer in pediatrics that I too realized healthcare is very complicated and there are numerous places errors can happen.

As a bedside advocate now for families, I can see where we envision a hospital is run by a nurse, or nurse assistant who whooshes in and out of the room with no other care in the world until his or her next opportunity to whoosh in and out again. There is no knowledge of other patients, other emergency's or paper work.

By allowing patients to understand a bit more of the hospital setting, we can appreciate the work that goes into being a medical professional.

Watching ER, House or the other medical shows on TV gives us an unrealistic view of healthcare. Being IN the hospital, when things go well does too. But, when things go wrong, it is difficult to then, and only then try to understand what may have caused the problem to arise. By being this transparent and allowing camera's and a reporter access, I am sure that more than a few people will become more vigilant in their care and speak up for themselves a bit more. And if not, we can also blame the funding cuts on that.