
My Father's Death...
Before His Time
Please read this for my sake
04/24/2013
Hello all. I know that this blog is supposed to be about my cancer travels, but something has happened that is so beyond my capacity to move on without shouting it out. I appreciate your reading this. Please copy it and take it around the world on the net if it moves you. Tell anyone you like. Pass it on. Someone needs to be helped from my experience. Someone out there needs to know this. I'm pasting it below.
This is not a pleasant story, but it’s one that has to be told – not just to appease my anger at the medical community, but to protect and prevent someone else from falling victim to what my father endured during his last days on this earth. This account is true to the best of my knowledge and comes specifically from telephone conversations I participated in, thing I witnessed in the hospital, and research into my father’s disease; it comes from my perspective and my interpretations of the facts and outcomes. Unfortunately, as I’ve researched legal practices, I find that libel suits are frequent when you say the wrong thing about physicians or hospitals – doctors can afford to fight. Therefore, I’ve had to take out not only the doctor’s name and the hospital involved, but also the state and county locations. That gives me pain, but the idea is to help someone else, so painful or not, I don’t get to tell the whole truth. This is not presented lightly and does not show aggression to those in medicine who are doing things right. I have nothing but wonderful things to say about the doctors and hospitals in Pennsylvania; they’ve saved my life. It speaks to a select undetermined number — elsewhere.
My dad had Parkinson’s, a nasty disease to be sure, but one that could have been managed for quite some years under the right tutelage. Since 2009, (when he was first diagnosed) he’d been on one medication – only one – prescribed by a medical neurologist in the United States. My parents loved her and followed all her instructions to the letter. The years moved on and my father’s health began to go down in 2012—but not quickly; slowly. There was no change in medication despite the fact that, through research, I found that there were many available should one not work or begin to become less effective. Dad was even having a reaction to the medication (my mother called it a spell) that supposedly develops from prolonged usage of this particular drug. Fast-forward to 2013. Somewhat suddenly, my father was falling down, wasn’t responsive, couldn’t walk or communicate (all symptoms from the Parkinson’s) – my mother was frightened. She called the family doctor who told her to call 911 to get my father to the hospital. Had she known what was to follow…well, hindsight being 20/20 and so forth.
My father was taken to the closest hospital. From what I’ve heard from those present, things went well and swiftly in the Emergency Room. I didn’t arrive until after my father was checked into the geriatrics section of the hospital. The doctor who spoke with me told me that my father was dehydrated and had a urinary tract infection. We hadn’t known about either of these things and told him that we’d called because of the Parkinson’s symptoms. I suggested that he contact my father’s neurologist to discuss a possible change of medication with her since he’d not been on anything different since 2009. (After researching the disease, I felt certain that this would be a help. These varied drugs were meant to be used in the likelihood that another began to fail and I was optimistic that changing the meds would help him to be restored to his prior state of just a few months before.) The hospital doctor told me that he KNEW what Parkinson’s looked like and did not need to confer with another doctor – he appeared insulted. I apologized saying that I’d not meant to offend him, but thought that he might gain something from talking to the doctor who had been treating my father for several years. Instead, I was told that Dad would be put on fluids for the dehydration and an antibiotic for the UTI (which, by the way, gave him C-diff – a malady that kills all the good bacteria in your bowel and then makes you very sick. Any infection reduces a Parkinson’s drug from performing at peak capacity, per the National Parkinson’s Foundation, and things did indeed get worse. C-diff is contagious too; thanks Doc.).
I called Dad’s neurologist’s office immediately to let her know what was happening. The person answering the phone told me that she would mark my father’s chart and that the Doctor would review it at Dad’s next visit (which was supposed to take place in about a month—at that time, this seemed like years away). I wasn’t happy with that and wanted her to be notified right away. I told the woman that time was incredibly important. This medical person assured me that she would advise the doctor. I got off the phone feeling in my heart that this was not going to happen.
The hospital stay went horribly forward, and the doctors advised that my father would need to have physical therapy and he would have to get out of bed everyday because the longer he stayed in bed with Parkinson’s, the less likely it would be that he would ever get out. So, every day we asked that this happen. He was in the hospital 10 days and not once was he given physical therapy or helped out of the bed – even to just sit in a chair, no matter what we did. Each doctor who visited advised that he was to be out of bed and that it would be taken care of. It never happened.
Back to Dad’s neurologist. I called back and requested a return phone call because things were going badly in the hospital. She called me and I told her the story. She promptly told me that she would not change his medication unless she saw him. I understood this, so I asked her to please come see him in the hospital. She told me that she would not because she was not affiliated with this particular hospital.
Let me step away from the story for a moment to tell you that the neurology practice was the only one housing neurologists in the area where my parents lived. The hospital my father was in was a short distance away. Other hospitals were not close and oftentimes difficult for an elderly person to navigate. My question: Why would a neurology medical practice (treating serious diseases that often affect the elderly) that was so close to a local hospital not have someone on staff who was affiliated there?
The neurologist told me to wait until my father went to a rehabilitation facility and to call her back. This took a 10-day atrocious hospital stay where my always-before-strong father was confined to a bed, not given meds at the correct times (a huge thing for Parkinson’s people), and was generally treated like a non-person. I don’t need to go into some of the other complaints here about the hospital – this is not the place nor my intent.
After 10 days, my father was released to a rehabilitation/nursing home and again very close to the neurologist’s office. I called her immediately for her to come see him. She told me that she was not affiliated with this rehabilitative nursing home and would not change his medication or visit. She mentioned my hiring an ambulance to bring him to her, but we didn’t have that kind of money and the insurance company would not pay for it. It was the money. I asked her what it would take for her to become affiliated, because my father was not doing well at all. She told me there was too much paperwork involved. (I don’t think I have to tell you how it felt to have my father reduced to “too much paperwork.”) I asked her if I needed to find another neurologist. She advised that I should call the hospital and have them fax over the medical reports for her to look at. This gave me hope. (Finding another neurologist at this late time would have been practically impossible, I had been thinking.)
I called the hospital’s Central Records department and was told that they could not release a patient’s records; that I should have the nursing home do it. The nursing home said that they were not allowed to do this either, but that they would, noting that the situation was serious. They faxed 67 pages to the neurologist’s office. My mother called to follow-up to make sure the papers were received. They were and my mother advised that she would call the next day to talk with the doctor about the paperwork and any next steps we could take. The neurologist told my mother that she’d already spoken to me and had advised that she was not affiliated with the rehab/nursing home and would not be visiting, discussing, or changing medications unless my father came to her office. He was in such terrible shape that the rehabilitation home advised that he could not be moved even if we wanted to. As far as I know, the neurologist never reviewed the papers she’d asked to see in the first place. I could be wrong, but if she did review them, why not talk with us? At the very least, I know that she has not contacted me or my mother.
Time was rolling right along now, and it was a Saturday night. The nursing home called me at 9 p.m., telling me that my father was quickly declining. The nursing supervisor told me that she would set up a call between me and the head of all the rehab/nursing homes they managed for that following Monday morning to see if something or someone else could be of assistance. (They were at least trying the best they could.)
By Monday morning, though, my father’s kidneys were shutting down and he was in renal failure. He’d lost his window of opportunity to try another Parkinson’s drug so that he might become strong enough to get well again. He’d spent 10 days in the hospital, and 15 days in the rehabilitation section of the nursing home before he died. 25 days and dead. The death certificate said Parkinson’s.
To my knowledge, the neurologist has not called the hospital, nursing home, and certainly not me or my mother to show any interest at all – no advice for what to do, who could help, how to handle it, how my father (her patient since 2009) was doing. I don’t believe she even knows he’s dead. The hospital’s interest came only in the form of a standard customer service questionnaire. What can I say? Their cafeteria food was good.
Now, I’m sure that the state where this occurred has specific guidelines that protect doctors and hospitals in situations like this and I don’t have a leg to stand on if I complain—thus my taking out all the names. I also know that it’s possible that a drug change might not have made any difference at all. Shouldn’t my father, though, have had that opportunity to try something different? If you were to ask me if the neurologist and hospital had a part to play in the death of my father, I’d say yes. Absolutely. No, they did not commit murder or set out that day to see him pass, but I believe that my father was allowed to die, and in a most unpleasant way — when I believe, with the appropriate attention, it was possible that he didn’t have to. I feel that my father was robbed of an opportunity to live. Decisions were made for him. And I’d say that I don’t know how those involved can sleep at night. I know I can’t.
So how does this affect others? How can you keep it from happening to you or someone close to you? Always ask what hospitals your doctors are affiliated with in case you need their advice while there—you life could depend upon it. This goes double for rehab facilities and nursing homes. Check the meds being prescribed for these serious neurological diseases to see how they should be used and when, because the doctor probably does not look at a patient’s case, it would seem, until the folder pops up on the examination room door the day of your appointment. You could be just another dollar to some of them. I never thought that doctors who took an oath to do no harm could be so cold to the elderly, but some (like the ones we were unlucky enough to deal with) just don’t seem to care—on to the next dollar.
As I’ve told my story, others are coming forth telling me theirs – I had no idea that this was so prevalent.
Bottom line: You can’t trust your loved ones to the medical community. Be your own advocate and be it early. Sickly beware.
A timely quote in any era:
My doctrine is this, that if we see cruelty or wrong that we have the power to stop, and do nothing, we make ourselves sharers in the guilt.
~Anna Sewell (1820-1878)
Before His Time
Please read this for my sake
04/24/2013
Hello all. I know that this blog is supposed to be about my cancer travels, but something has happened that is so beyond my capacity to move on without shouting it out. I appreciate your reading this. Please copy it and take it around the world on the net if it moves you. Tell anyone you like. Pass it on. Someone needs to be helped from my experience. Someone out there needs to know this. I'm pasting it below.
This is not a pleasant story, but it’s one that has to be told – not just to appease my anger at the medical community, but to protect and prevent someone else from falling victim to what my father endured during his last days on this earth. This account is true to the best of my knowledge and comes specifically from telephone conversations I participated in, thing I witnessed in the hospital, and research into my father’s disease; it comes from my perspective and my interpretations of the facts and outcomes. Unfortunately, as I’ve researched legal practices, I find that libel suits are frequent when you say the wrong thing about physicians or hospitals – doctors can afford to fight. Therefore, I’ve had to take out not only the doctor’s name and the hospital involved, but also the state and county locations. That gives me pain, but the idea is to help someone else, so painful or not, I don’t get to tell the whole truth. This is not presented lightly and does not show aggression to those in medicine who are doing things right. I have nothing but wonderful things to say about the doctors and hospitals in Pennsylvania; they’ve saved my life. It speaks to a select undetermined number — elsewhere.
My dad had Parkinson’s, a nasty disease to be sure, but one that could have been managed for quite some years under the right tutelage. Since 2009, (when he was first diagnosed) he’d been on one medication – only one – prescribed by a medical neurologist in the United States. My parents loved her and followed all her instructions to the letter. The years moved on and my father’s health began to go down in 2012—but not quickly; slowly. There was no change in medication despite the fact that, through research, I found that there were many available should one not work or begin to become less effective. Dad was even having a reaction to the medication (my mother called it a spell) that supposedly develops from prolonged usage of this particular drug. Fast-forward to 2013. Somewhat suddenly, my father was falling down, wasn’t responsive, couldn’t walk or communicate (all symptoms from the Parkinson’s) – my mother was frightened. She called the family doctor who told her to call 911 to get my father to the hospital. Had she known what was to follow…well, hindsight being 20/20 and so forth.
My father was taken to the closest hospital. From what I’ve heard from those present, things went well and swiftly in the Emergency Room. I didn’t arrive until after my father was checked into the geriatrics section of the hospital. The doctor who spoke with me told me that my father was dehydrated and had a urinary tract infection. We hadn’t known about either of these things and told him that we’d called because of the Parkinson’s symptoms. I suggested that he contact my father’s neurologist to discuss a possible change of medication with her since he’d not been on anything different since 2009. (After researching the disease, I felt certain that this would be a help. These varied drugs were meant to be used in the likelihood that another began to fail and I was optimistic that changing the meds would help him to be restored to his prior state of just a few months before.) The hospital doctor told me that he KNEW what Parkinson’s looked like and did not need to confer with another doctor – he appeared insulted. I apologized saying that I’d not meant to offend him, but thought that he might gain something from talking to the doctor who had been treating my father for several years. Instead, I was told that Dad would be put on fluids for the dehydration and an antibiotic for the UTI (which, by the way, gave him C-diff – a malady that kills all the good bacteria in your bowel and then makes you very sick. Any infection reduces a Parkinson’s drug from performing at peak capacity, per the National Parkinson’s Foundation, and things did indeed get worse. C-diff is contagious too; thanks Doc.).
I called Dad’s neurologist’s office immediately to let her know what was happening. The person answering the phone told me that she would mark my father’s chart and that the Doctor would review it at Dad’s next visit (which was supposed to take place in about a month—at that time, this seemed like years away). I wasn’t happy with that and wanted her to be notified right away. I told the woman that time was incredibly important. This medical person assured me that she would advise the doctor. I got off the phone feeling in my heart that this was not going to happen.
The hospital stay went horribly forward, and the doctors advised that my father would need to have physical therapy and he would have to get out of bed everyday because the longer he stayed in bed with Parkinson’s, the less likely it would be that he would ever get out. So, every day we asked that this happen. He was in the hospital 10 days and not once was he given physical therapy or helped out of the bed – even to just sit in a chair, no matter what we did. Each doctor who visited advised that he was to be out of bed and that it would be taken care of. It never happened.
Back to Dad’s neurologist. I called back and requested a return phone call because things were going badly in the hospital. She called me and I told her the story. She promptly told me that she would not change his medication unless she saw him. I understood this, so I asked her to please come see him in the hospital. She told me that she would not because she was not affiliated with this particular hospital.
Let me step away from the story for a moment to tell you that the neurology practice was the only one housing neurologists in the area where my parents lived. The hospital my father was in was a short distance away. Other hospitals were not close and oftentimes difficult for an elderly person to navigate. My question: Why would a neurology medical practice (treating serious diseases that often affect the elderly) that was so close to a local hospital not have someone on staff who was affiliated there?
The neurologist told me to wait until my father went to a rehabilitation facility and to call her back. This took a 10-day atrocious hospital stay where my always-before-strong father was confined to a bed, not given meds at the correct times (a huge thing for Parkinson’s people), and was generally treated like a non-person. I don’t need to go into some of the other complaints here about the hospital – this is not the place nor my intent.
After 10 days, my father was released to a rehabilitation/nursing home and again very close to the neurologist’s office. I called her immediately for her to come see him. She told me that she was not affiliated with this rehabilitative nursing home and would not change his medication or visit. She mentioned my hiring an ambulance to bring him to her, but we didn’t have that kind of money and the insurance company would not pay for it. It was the money. I asked her what it would take for her to become affiliated, because my father was not doing well at all. She told me there was too much paperwork involved. (I don’t think I have to tell you how it felt to have my father reduced to “too much paperwork.”) I asked her if I needed to find another neurologist. She advised that I should call the hospital and have them fax over the medical reports for her to look at. This gave me hope. (Finding another neurologist at this late time would have been practically impossible, I had been thinking.)
I called the hospital’s Central Records department and was told that they could not release a patient’s records; that I should have the nursing home do it. The nursing home said that they were not allowed to do this either, but that they would, noting that the situation was serious. They faxed 67 pages to the neurologist’s office. My mother called to follow-up to make sure the papers were received. They were and my mother advised that she would call the next day to talk with the doctor about the paperwork and any next steps we could take. The neurologist told my mother that she’d already spoken to me and had advised that she was not affiliated with the rehab/nursing home and would not be visiting, discussing, or changing medications unless my father came to her office. He was in such terrible shape that the rehabilitation home advised that he could not be moved even if we wanted to. As far as I know, the neurologist never reviewed the papers she’d asked to see in the first place. I could be wrong, but if she did review them, why not talk with us? At the very least, I know that she has not contacted me or my mother.
Time was rolling right along now, and it was a Saturday night. The nursing home called me at 9 p.m., telling me that my father was quickly declining. The nursing supervisor told me that she would set up a call between me and the head of all the rehab/nursing homes they managed for that following Monday morning to see if something or someone else could be of assistance. (They were at least trying the best they could.)
By Monday morning, though, my father’s kidneys were shutting down and he was in renal failure. He’d lost his window of opportunity to try another Parkinson’s drug so that he might become strong enough to get well again. He’d spent 10 days in the hospital, and 15 days in the rehabilitation section of the nursing home before he died. 25 days and dead. The death certificate said Parkinson’s.
To my knowledge, the neurologist has not called the hospital, nursing home, and certainly not me or my mother to show any interest at all – no advice for what to do, who could help, how to handle it, how my father (her patient since 2009) was doing. I don’t believe she even knows he’s dead. The hospital’s interest came only in the form of a standard customer service questionnaire. What can I say? Their cafeteria food was good.
Now, I’m sure that the state where this occurred has specific guidelines that protect doctors and hospitals in situations like this and I don’t have a leg to stand on if I complain—thus my taking out all the names. I also know that it’s possible that a drug change might not have made any difference at all. Shouldn’t my father, though, have had that opportunity to try something different? If you were to ask me if the neurologist and hospital had a part to play in the death of my father, I’d say yes. Absolutely. No, they did not commit murder or set out that day to see him pass, but I believe that my father was allowed to die, and in a most unpleasant way — when I believe, with the appropriate attention, it was possible that he didn’t have to. I feel that my father was robbed of an opportunity to live. Decisions were made for him. And I’d say that I don’t know how those involved can sleep at night. I know I can’t.
So how does this affect others? How can you keep it from happening to you or someone close to you? Always ask what hospitals your doctors are affiliated with in case you need their advice while there—you life could depend upon it. This goes double for rehab facilities and nursing homes. Check the meds being prescribed for these serious neurological diseases to see how they should be used and when, because the doctor probably does not look at a patient’s case, it would seem, until the folder pops up on the examination room door the day of your appointment. You could be just another dollar to some of them. I never thought that doctors who took an oath to do no harm could be so cold to the elderly, but some (like the ones we were unlucky enough to deal with) just don’t seem to care—on to the next dollar.
As I’ve told my story, others are coming forth telling me theirs – I had no idea that this was so prevalent.
Bottom line: You can’t trust your loved ones to the medical community. Be your own advocate and be it early. Sickly beware.
A timely quote in any era:
My doctrine is this, that if we see cruelty or wrong that we have the power to stop, and do nothing, we make ourselves sharers in the guilt.
~Anna Sewell (1820-1878)