“Has Will been brought to his room yet” I asked the volunteer at Long Island hospital? “Yes, she’s in room 403. You can go see her now.”
“Will is a man,” I gently explained to the elderly volunteer. “Do we have the right patient?” She heard me and repeated “She’s in 403,” and then told me where the elevators were.
If this is the frustration I am having in just a few sentences, than what was Will going through in a lifetime as a transgender man?
At a hospital, I always thought that staff were trained to listen. What I was finding is that, as in all of life, people bring their prejudice, personal beliefs and skills, or lack thereof, to their job. In this brief, but very frustrating scenario, “Pink Lady” as the volunteers are so affectionately called, had no intention of hearing me. William was in room 403, now I should leave and our relationship is over.
Staff were generally very sensitive to Will. The doctor was going to put him on the postpartum floor following his surgery but we requested he not be put on a floor where patients, no matter what their name, facial hair growth or deep voice sounded like, were female. Will was not a woman and there was no reason to put him on a floor with women. He is not a surgical procedure he is a person with feelings and needs. It was my job, in part, to be sure those needs were met.
Will got a private room on a surgical floor.
The nurses and nurse’s aides would pull me aside and ask “it’s “he” right”? I thanked them for asking and reminded them to share the information with the next shift.
Sunday, May 31, 2009
Wednesday, May 27, 2009
Doctor's Conversation
A conversation with a doctor, about a patient, turned to a discussion about his high rate of medical malpractice insurance. Although this doctor was not actually complaining, he was telling me (the advocate) and the patient’s family member about the exuberant amount he pays. The topic, brought up by the patient’s family member made me very uneasy and the doctor, seeming to sense my uneasiness, made light of subject answering honestly the questions put out by the curious family member. This physician gave no sign of any discomfort but instead, seemed relaxed as if we were discussing a recent ball game.
To get away from the subject, I did say that I felt this was not appropriate since we were there to discuss the patient, but what was appropriate is if he wouldn’t mind explaining the large medical malpractice lawsuit he had a few years ago. Shifting in his seat, the doctor still in his comforting voice said “oh that?” and went on to explain what had happened to the patient and why he was involved in the lawsuit. He never asked how I knew but being a family’s advocate compels me to do some homework on the doctor we will be seeing as a team. This doctor told us what the patient’s complaint was and then started telling us about other lawsuits he had endured. He told us his side of the experience and then what he said the patient’s actions were that made this lawsuit un (non) believable.
I listened to every word he was saying, and the incident could have been a life changing experience I have heard any number of times by patients. But now I was hearing another version from the other side. I had to wonder what that patient, who was involved in a lawsuit that no doubt lasted years, would have given to sit in that room, with that doctor and hear what he had to say. After all, it started to make sense how an injury, such as he described, can happen.
Instead of a conversation between the patient and physician, the physician, who obviously has a great bedside manner and plenty of experience, had to endure a lawsuit. And the patient, who may have really liked this doctor, was probably never given the courtesy of learning what happened from their beloved doctor himself. Instead, the patient feels like a victim and the physician feels like a scapegoat because the hospitals still won’t encourage the dialogue to happen freely following an adverse event.
It made me sad that this discussion, even years after patient safety has begun to be a household term, probably never took place. For a patient to see a lawyer, most often, he or she is not getting the answers they need but the hospital attorneys encourage the medical team not to talk to the patient thrusting the patient into a time consuming, emotionally draining and messy lawsuit. Very often, it could be avoided by having a conversation – like we were that day.
So, though that doctor was distraught over the lawsuit (s) he encountered, I have to wonder if he would be willing to break down that wall of silence and would have met with his patient. Probably not.
To get away from the subject, I did say that I felt this was not appropriate since we were there to discuss the patient, but what was appropriate is if he wouldn’t mind explaining the large medical malpractice lawsuit he had a few years ago. Shifting in his seat, the doctor still in his comforting voice said “oh that?” and went on to explain what had happened to the patient and why he was involved in the lawsuit. He never asked how I knew but being a family’s advocate compels me to do some homework on the doctor we will be seeing as a team. This doctor told us what the patient’s complaint was and then started telling us about other lawsuits he had endured. He told us his side of the experience and then what he said the patient’s actions were that made this lawsuit un (non) believable.
I listened to every word he was saying, and the incident could have been a life changing experience I have heard any number of times by patients. But now I was hearing another version from the other side. I had to wonder what that patient, who was involved in a lawsuit that no doubt lasted years, would have given to sit in that room, with that doctor and hear what he had to say. After all, it started to make sense how an injury, such as he described, can happen.
Instead of a conversation between the patient and physician, the physician, who obviously has a great bedside manner and plenty of experience, had to endure a lawsuit. And the patient, who may have really liked this doctor, was probably never given the courtesy of learning what happened from their beloved doctor himself. Instead, the patient feels like a victim and the physician feels like a scapegoat because the hospitals still won’t encourage the dialogue to happen freely following an adverse event.
It made me sad that this discussion, even years after patient safety has begun to be a household term, probably never took place. For a patient to see a lawyer, most often, he or she is not getting the answers they need but the hospital attorneys encourage the medical team not to talk to the patient thrusting the patient into a time consuming, emotionally draining and messy lawsuit. Very often, it could be avoided by having a conversation – like we were that day.
So, though that doctor was distraught over the lawsuit (s) he encountered, I have to wonder if he would be willing to break down that wall of silence and would have met with his patient. Probably not.
Sunday, May 24, 2009
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.
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.
Friday, May 22, 2009
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?
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?
Thursday, May 21, 2009
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?
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?
Sunday, May 10, 2009
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..
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..
Friday, May 8, 2009
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?
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?
Wednesday, May 6, 2009
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.
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.
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