My father died 25 years ago today

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My father died 25 years ago today.

In the picture above, he’s 60 years old, holding my second son less than an hour after his birth. That baby just graduated from law school and is engaged to be married. My father missed it all. He was dead less than 5 months after this picture was taken, although we had no idea at the time that the cancer that would kill him was growing wildly in his chest and had been for months.

Any illusions that I had about the practice of medicine died with him.

Many people confuse my condemnation of the pseudoscience of natural childbirth, lactivism and attachment parenting with blind support of the medical profession. Nothing could be further from the truth. I’ve seen the glaring deficiencies of medical practice up close. My father died at the hospital where I had trained, where I was on the staff, where I had convinced him to switch his medical care. He died after a major medical mistake and, but for my aggressive intervention, would have died in agony while my colleagues looked on as if there was nothing they could do to ease his suffering.

I know what bad medical care looks like, and I know how common it is.

My father had a chest X-ray on November 1, 3 months after the photo was taken, and the day after he first coughed up blood. He had a fist size cancer in the middle of his chest. I got the message as I was finishing up in the operating room and hurried to meet him at the office of the chest surgeon. I didn’t have to go very far; I simply took the elevator.

During the appointment, I listened as the surgeon explained the various grim possibilities: lung cancer, lymphoma, etc. They scheduled a biopsy procedure for two days later and the surgeon asked if my father had any questions. He had only one: How could he have a fist sized tumor in his chest if only a few months before (March) he had been in this same hospital to have bladder stones removed, and his pre-op chest X-ray had been normal? The surgeon was sympathetic; sometimes tumors could grow so fast that it they could be too small to detect even a few months previously.

The biopsy revealed adenocarcinoma with an unknown primary. In other word, the cancer was so aggressive that it had lost all the features of the organ where it originated; it might have been lung cancer, but it easily could have been a metastasis from prostate cancer, or indeed any other cancer.

At some point during those days, I thought to look at the original chest X-ray, the one that had been done routinely in March. I wanted to see if, knowing what we knew now, the cancer could be detected in its earliest stages. I went down to the radiology department and requested the film. I was an attending physician at the hospital and had worked there for years. They handed over the film without question.

It is difficult to capture the sense of shock and horror that I experienced on looking at the X-ray. The cancer had been diagnosed on the pre-op film. Ironically, the diagnosis had been very skilled. The cancer was small and indistinct on the original x-ray, but the radiologist had found it anyway and prominently noted it in the written report. I immediately called my father’s primary care doctor to ask if he was aware of this. He admitted that he had known since November 1, as had the chest surgeon. The surgeon had simply lied when he had he led my father (and me) to believe that the original chest X-ray was clear.

Why had they failed to tell my father of the cancer on his original X-ray? Every doctor had thought that the job of telling the patient belonged to someone else. The radiologist thought that the urologist would tell my father, since the urologist had ordered the x-ray. The urologist thought that the radiologist would alert my father if there were anything abnormal on the x-ray. The anesthesiologist was aware that the chest x-ray showed a small cancer, but assumed that either the urologist or the radiologist had told my father. The radiologist actually sent the urologist the x-ray report, which mentioned the cancer, but the as the urologist admitted at trial years later, he had never looked at it.

Why did the doctors lie about it? When I confronted the primary care doctor he claimed that they did it to protect my father. They didn’t want to “lower his morale.” Obviously it was because no one wanted to admit what had happened, and because they wanted to protect each other. I can’t imagine how they thought they would keep it a secret. I worked at the same hospital. I had complete access to all the records, including the X-ray, yet somehow they convinced themselves I would never look.

Despite multiple types of aggressive chemotherapy, my father died 8 weeks to the day after the diagnosis. I wish I could tell you that his last day was a revelatory experience, that I had never realized how poorly dying patients were treated. Unfortunately, I knew better, and therefore was prepared to fight on his behalf.

Oh Christmas evening my mother called me at home to tell me that my father was in agony and no one would help him. I nursed my infant son to sleep and headed for the hospital, my hospital. When I saw my father, I was appalled. He was sitting bolt upright in bed, gasping for air, and clutching his chest.

I paged the intern myself and demanded his presence. The intern, to his credit, was abashed. He acknowledged that my father was clearly in terrible distress, and we agreed that morphine would ease his agony, but the intern refused to order the morphine because it “might hasten” his death.

My father was dying. Every treatment had failed and there was nothing left to try. There was no hope of recovery. And we were going to withhold pain medication … why? To prolong his death?

As you might imagine, I did not take “no” for an answer.

It was well after midnight at this point when the intern woke up his resident. I could hear that the resident was unwilling to order the pain medication, and I grabbed the phone. The resident insisted that he didn’t have the authority, only the oncology fellow could decide.

So I called the oncology fellow myself and woke him up. He couldn’t possibly order pain medication in this setting, because it might slow my father’s breathing and thereby hasten his death. Only the attending physician on call had the authority to issue that order.

Then I called the attending at home and woke him up. He listened and replied, “Look, Amy, I know you’re upset, but it’s the middle of the night. Why don’t we wait until morning when your father’s own doctor will be back and he can make the decision?”

By this point, I may, possibly, have raised my voice a bit, and a crowd of nurses and support personnel had gathered to watch from a discreet distance. I demanded that he appear in person to tell me to my face that he would not order the pain medication.

He relented and I handed the phone to the nurse so she could record the order. I started to relax.

The nurse hung up the phone and I looked at her expectantly.

“I can’t give that morphine,” she said. “I’m not comfortable with giving medication to a patient so near death.”

“You’re not comfortable?” I may, possibly, have yelled. “Not comfortable? Do I look like I care about your comfort?”

I threatened to break into the narcotics cabinet myself and get it, and then report her to the hospital administration for failing to follow an order.

She, too, relented and hung a morphine drip. Within 5 minutes my father began to ease back against the pillows. After 10 minutes, he looked at me and smiled. “I feel great!” he said. “I haven’t felt this good in months. This is terrific.”

He died less than 24 hours later. Throughout the day, he kept telling everyone how wonderful he felt. The rest of my family kept thanking me for demanding what I should not have had to demand: adequate pain relief for a dying man.

And so my beloved father died in the hospital where they had made a dreadful mistake and where they nearly got away with denying him the pain relief that was the only thing they had left to give … my hospital.

It’s been 25 years and I miss him every day. Believe me, I have no illusions about the state of contemporary medicine.

  • Debbie

    That is pure inhumane and so neglective. I’m so sorry you had to go though that and so many families have no help and have to watch their loved one’s die in this tragic way. I hate to say this, but Karma I pray gets them back personally for treating patients this way. I have a 73 yr old father, my Mom passed in 2009 after their 43rd wedding anniversary. He was just released but I feel like I have been to battle with the devil himself. We took him to a very good heart hospital, Wake Medical Heart Center in Raleigh, NC. My father was sharp as a tac and went out line dancing with his oldest friends for years. He was just having trouble breathing. I’ll skip a lot, testing, etc but finally we had a surgery date, February 19, 2015. I’m an only child, not because they didn’t try so I’m a true daddy’s girl, have been all my life. Thought I was putting him in the best hospital money could buy and medical care after surgery. They ended up changing 6 prescriptions including his blood pressure, anxiety, depression, cholesterol, and a few more. My dad has been under before, never had any problems, came thru like a champ. This was a nightmare. I stayed in the hospital s hotel upstairs for 6 nights and he was halliuncationing, was left unattended in a chair on a potty chair while asleep and he woke up and stood. His room and wristband reads FALL RISK in yellow letters this is 2 days after his mitral valve had been replaced and triple bypass!!!!!!! The respiratory nurse was questioning his nurse why he had not been on the bypab oxygen mask which forces air in, because his was so low!!!! They ended up pushing 60% for him. They did not call Me upstairs to tell me he fell, about his oxygen, nothing, iv pulled out, feeding tube pulled out, etc etc. TOTAL NEGLECT. I have him home now, but his brain is still not right everybody. I’m so upset, I just want my daddy back. They always made excuses. If he doesn’t start coming around, I think I will at least talk with a lawyer cause right now, he could not drive mentally. Between the oxygen and letting him fall and hit that floor head first, I think I need to do some pushing back. What’s anybody else’s opinion???? Email me please, debbieromig@gmail.com. So sorry for everyone’s horrible stories. This is health care?????content://media/external/file/15013

  • Laura

    I have been reading your blog on and off for years, thank you for sharing this very personal story.

  • moto_librarian

    I am so very sorry, Dr. Amy. At least his death resulted in a change of practice, but that is cold comfort to those left behind.

    I do think that palliative care has improved, but you do have to fight for it in many instances. My mother-in-law died last February. She had a degenerative heritable condition similar to muscular dystrophy, and had been in a wheelchair since my husband was a child. She had been in a nursing home for ten years. Just before Christmas, they found a tumor in her liver. Her doctor, who knew quite well that she had a DNR and had refused oxygen for pneumonia, could not let go. She convinced my FIL to put her on oxygen, and then sent her to the hospital for a consultation regarding chemo. My mother-in-law had to go by ambulance, and she was likely in a coma. The oncologist took one look and ordered that she be taken back to the nursing home because he knew that there was absolutely no reason to put her through chemotherapy. At that point, we convinced my father-in-law to put hospice in charge of her care, and the ridiculousness finally ended. She died a couple of days later.

    For a nation as religious as the United States is, I find it perplexing that death provokes such fear. I also fail to understand why so many think nothing of euthanizing a dying pet, yet seek to withhold adequate pain medication from dying humans.

    • ConcernedParent

      If we can give such a huge level of respect to animals and help them pass on without further pain then we should dang well respect and do it for fellow humans as well.

  • Are you nuts

    I’m so sorry your dad passed in such a heartbreaking and frustrating manner. Bless you for so doggedly fighting for humane pain relief – for your father at the time, and continuing for laboring mothers.

  • Sue

    Thanks for sharing this story, Amy. Seeing that photo of your Dad again reminds me that another year has passed.

    I want to give my thanks to Amy and all my SOB friends for another year of enlightening and amusing discussion.

    This year has seen legal changes, inquiries and exposure about home birth, recalcitrant ex-health care workers, anti-vaxers and homeopathy. Activism DOES work. And sharing friendship with like-minded people makes it enjoyable too.

    • sdsures

      Glad to be here.

  • Mishimoo

    This was well-written and absolutely heartbreaking; I wish he’d had more time with you and your family.

  • Epidural Guy

    Sorry to hear your story. My deepest sympathies. This is the eerie reality of our profession: when we make mistakes it’s ruins people’s lives. Just like yours, my aversion to “natural birth” has nothing to do with the loyalty to the medical fraternity. Medicine has lots of problems, it’s just that “natural birth” is not the answer to them.

  • sopranomama

    This is heartbreaking and beautifully written. Thank you for sharing. His legacy is a daughter who tries to prevent suffering and death every day. That’s quite an amazing thing to leave behind.

  • OldTimeRN

    Now that my tears have stopped flowing I think I can form a clear thought. Why is it we treat our dying animals with more dignity then our fellow human beings?

    Thank you for sharing. My own father is close to 76 and relatively healthy. But I know that can change fast as your father’s story shows.

  • sdsures

    I’m so sorry your dad was in so much pain and that they failed to treat it adequately. @AmyTuteur:disqus You mentioned a trial. Was there some sort of litigation to this effect?

  • anne

    Thank you for sharing your story and your father’s story.

  • Allie

    This story resonates with me. It was exactly my experience when my grandmother was dying. Her organs had shut down and she was clearly in agony and not going to recover, but when we demanded adequate pain relief the nurse said she might get addicted. I shit you not. She actually suggested a dying woman should be denied pain relief because she might get addicted. We had to beg and plead for every grain of morphine. It was agonizing for everyone. We contemplated going downtown to buy street drugs, but we were afraid we might make things worse and we didn’t even really know where to go or what to ask for or how to administer it. The anesthesiologist was sympathetic, but little help. When we explained the problem, he said “welcome to the [our Canadian province] medical system.” I wrote and presented a paper on the subject of inadequate pain medication for dying patients at an Elder Law conference a few months after her death. The thing that really strikes me about your experience, Dr. Amy, is the glaring ignorance of the nurse. The research I did revealed that opiates do not, in fact, significantly depress the respiration of patients in real pain, nor do they hasten death in such patients. They have, in fact, the effect you described… they relieve the pain and render the patient “normal,” giving them the opportunity to spend their last days and hours of quality time with their loved ones. Personally, I believe the so-called “war on drugs” is responsible for our terrible attitude about pain relief, and has done far more harm than good.

  • Bugsy

    Dr. Amy, thanks so much for sharing that post; I think it’s important to acknowledge that so many of us who believe in medicine over pseudo-science do not simply believe that it’s 100% perfect and infallible.

    I imagine not a day goes by where your father’s memory is not honoured through his legacy. All the best.

  • Woozie

    Deepest Sympathies. As an SLP who worked for almost 10 years in the hospital and long term care settings, I see a huge need for change in the death and dying process. Education and good training are hard to find. Leaving families in fear, following the almighty dollar (Medicare), and allowing patients to suffer happens way too often. I am glad you fought to provide pain medication to your father. Some families think they don’t have a choice and that death looks like that. It doesn’t have to be like that. I cannot count the number of times I’ve been called in for a swallow study on a dying patient, to then explain that swallowing function can change near end of life (without being the one who is allowed to discuss palliative care). Many families are relieved to hear that a feeding tube is a choice as some GI doc came in and made it sound like a needed thing. I could go on and on. But I’ll end my rant. Communication between providers is so important and I am glad you sought legal counsel because of their poor communication and passing the buck.

    • Montserrat Blanco

      I am a medical oncologist and work in Spain. It is totally different here. Few of my patients die without a palliative sedation. We have a palliative care unit just above ours and patients are routinely admitted there for end of life care. I do not remember getting a feeding tube for any of my terminally ill patients. I am astonished that it is so different in Canada.

  • anh

    This was a really beautiful entry.

  • guest

    Only sixty years old, with that beautiful baby to look forward to. I am crying.

  • Guesteleh

    I’m very sorry for the loss of your father and for the inexcusable conduct of your colleagues.

    For readers who are interested in learning more about efforts to reduce medical errors and improve patient safety”

    U.S. report on efforts to improve patient safety since the implementation of Obamacare

    Institute for Healthcare Improvement, which has lead national initiatives to improve patient safety and reduce medical errors

    Chasing Zero, a documentary produced by Dennis Quaid after his newborn twins were nearly killed by a hospital error

  • OBPI Mama

    I am so sorry for the loss of your Dad. I can’t imagine the pain of that. 🙁

  • birthbuddy

    Sadly, the NCB idiots will read this and miss the point. They will interpret it as an argument to deliver at home.
    The point is that the medical community learn from mistakes and the NCB don’t have a clue about risk management.
    Some examples;
    The law is now quite clear that the practitioner who orders the test is responsible for following up the results.
    Palliative care is now a subspecialty in medicine.
    Withholding pain relief from patients was a major source of complaints against practitioners in NZ in the early 2000’s and changed practice.
    The law on ‘loss of chance’ unfortunately does limit the chance of success in some cases.
    These doctors should have acknowledged their mistake and apologised immediately. They should definitely not have withheld analgesia.
    Open disclosure is now mandated in Australia.
    Yet another example of how the medical profession learns and adapts.
    NCB, not so much.

  • TwinMom

    I’m so sorry for what your family had to go through.

    I come from a family of physicians and am married to one as well.

    I believe our system of modern medicine here is, like democracy itself, the worst possible system, with the exception of all the others.

    This is after I (and my twins) dodged death due to medical mistakes.

    May your father’s memory be a blessing.

    • Sue

      ”the worst possible system, with the exception of all the others”

      Indeed.

  • Comrade X

    I’m so very sorry to hear that horrific story, Dr Tuteur. Thank G-d your father had you to fight his corner. By the way, he really does look extraordinarily like you. May he rest in peace, may perpetual light shine upon him, and may his memory be a blessing.

  • Young CC Prof

    What an awful thing.

    The system of medical care is still far from perfect, though I hope it’s getting better.

  • Dr Kitty

    I am so sorry for all that happened.
    Your love for your father and your righteous anger is almost palpable.

    Here, at least, the system about diagnostics is very clear. If you order a test you are responsible for the result.
    You can ask a colleague if they will accept that responsibility, but you cannot delegate it to them without their agreement.

  • Karen

    My father died 10 years ago, Dr. Amy. He was diagnosed with myelodysplastic syndrome In May and died in early July. In retrospect we could see that the shortness of breath and fatigue he had suffered for years was not allergies, but the earlier stages of this pre-leukemic condition.
    His oncologist had told him to expect 10 years, but when he couldn’t eat anything, his mouth was covered with ulcers, and he had fits of high fever and uncontrollable shaking that we convinced him to go to the hospital.
    His oncologist was out of town that weekend. Upon noting blood in his stools, a gastroenterologist performed surgery to remove what he thought was some kind of mass or blockage.
    Basically, surgery was performed on a man who was in the end stages of a blood disorder that prevented clotting – his bone marrow could no longer make functioning red blood cells.
    Why was surgery performed on a man for whom death was a certainty?
    Finally, when I arrived from several states away we asked the doctors – who were talking about more surgery – if my dad had any chance of getting well – would further surgery do any good?
    It took a lot of persistence on my part, but the doctors basically said “no.” We did not want more pointless surgery.
    The next day I posed the same question to my father’s oncologist who told us the only way he could survive was with continuous blood replacement, and that would be short term. He was bleeding out almost as fast as blood was replaced via IV.
    After much discomfort on his part, the doctor admitted my father was dying and nothing would allow him to go home again or have any quality of life.
    My dad was suffering from ICU psychosis and had been since the surgery had been performed. He seemed to understand, though, when his doctor asked him if he’d had enough. My dad said yes.
    We then made the decision to stop all blood transfusions and give morphine for pain/discomfort as needed. One nurse had the gall to say to my mother, “I could never do that” – as if this were somehow an easy decision to make for her husband of more than 50 years.
    I think my father would likely have died within a few weeks whether the surgery had been performed or not – but his final days might have been more peacefully spent at home, attended to by family, instead of confused and bleeding to death in a hospital.
    I can’t help but wonder how many more pointless interventions would have been made and how long the doctors would have waited to tell us of his impending death if I hadn’t brought it up first.
    My father was what was called an “atomic veteran” – having served in the navy right after WWII. He was in the Bikini Islands when old ships were blown up with atomic bombs. He remembered watching the blast from only miles away and swimming in the lagoon in the days right after the detonations. His bone marrow cells showed mutations that his oncologist said could only have been caused by exposure to radiation. We appealed to the U.S. Gov’t. for restitution for my mom, but his blood disorder wasn’t listed on the “approved” illnesses. Had he lived long enough to develop leukemia, that would have qualified. We were just lucky, I guess, to have had him with us for the approx. 60 years he lived after exposure.

  • DrDEG

    I also extend my sympathies for such a large loss, and for the way it happened. I think that we medical professionals are almost more hurt/angry/surprised when we personally experience medical incompetence or error than the lay public is. Knowing the time and care that we try to bring to our patients makes it incredibly painful when someone else doesn’t do the same for ourselves or our loved ones. Obviously, we know medicine, and the people who practice it, are not perfect, yet we still expect the highest possible standard. My own hospital has made several (much more minor) errors in confidentiality regarding some care I received, and it was agonizing to have that occur.
    Finally, my father in law was in a similar situation–dying, but with caregivers reluctant to give enough analgesia to comfort him. The family, with me adding “credibility” by being an MD, had to really pressure the staff. That was in NYC, only 9 years ago.

    • Sue

      We seem to be caught up in a misunderstanding of the distinction between euthanasia vs inevitable death.

      If a person is already in the process of dying, giving medication CAN hasten death. But is this a bad thing? I always ask the question in the reverse – is a slow death preferable?

      Ironically, working in Emergency Medicine, I find myself having this conversation with families all the time. Dying people are often brought to EDs in the very process of dying – either because it was unexpected, or preparation had not been made, or the family simply did not have the resources to manage the death at home. IN some ways, being a complete stranger allows me to be frank and just support the dying process – having no investment in any sense of treatment ”failure”.

      It’s sad when too much medicine causes harm and distress at the end of life.

  • yentavegan

    Thank you for sharing this painful event in your family’s life. I too have known the sadness of seeing a loved one suffer in pain needlessly due to medical negligence.

  • jhr

    What a sad and powerful description of the tragic circumstances surrounding the death of your father. May his memory is a blessing to you and your family.

  • just me

    This makes me so sad/mad. I hope your family sued the shit out of the hospital although that may have been awkward with you working there.

    As for the home birth people, they seem to be more about “conventional medicine is always wrong/doctors lie” whereas you seem to be saying it’s usually right but sometimes people fuck up as they did big time here. This is so shockingly awful, especially when you think there’s gotta be many more people this happened to that didn’t have doctor kids on staff. I really hope things in this area have improved in the last 25 years.

    • Amy Tuteur, MD
      • just me

        I’m not a pi or med mal lawyer… But still. Here in california you can interview juries, too bad you couldn’t there. But really–their expert ALWAYS found the patient would’ve died anyway??? Meanwhile recently here, a young woman who as a drunk teen got into a car with a drunk friend who crashed it leaving her paralyzed, sued toyota claiming the seat belt was to blame despite it meeting safety stds when the car was made. A lot of us local attorneys scoffed yet the jury awarded her 12 mil out of sympathy no doubt. Yet I find your father’s story much more sympathetic.

      • attitude devant

        OK. So tort law fails us….often! But where it really counts these pathetic excuses for human beings lose. Mene, mene, tekel, upharsin!

      • Medwife

        Were the responsible parties held responsible, if not for failure to act on that report, but for lying about it? Was there any internal consequence? Did anyone complain to the medical board? I do understand that when practitioners seem to walk away from malpractice with not so much as a smack on the wrist, people will try to get justice through the court system. (And if you’re injured through a home birth, that’s not an option either.)

        • Amy Tuteur, MD

          There were internal consequences. The malpractice insurer for the Harvard hospitals mandated that going forward any unexpected serious finding on an X-ray must be reported by the radiologist immediately and directly to the attending physician.

          No one complained to the medical board, but a lot of people were shamed and hopefully learned from the incident since it was public knowledge within the hospital.

    • Wendy Hinds

      I’m a home birth advocate who is hugely grateful for the skill and brilliance of obstetricians who save lives every day. I know many many midwives who deliver babies at home and they all share my opinion. Homebirth is safe BECAUSE it exists within a system where transfer to hospital and obstetric intervention is available, and nobody in the UK would wish it otherwise

      In relation to end of life care – my terminally ill father died 4 years ago in a side room off a busy hospital ward. His care was decent but not what we wanted for him or what he wanted himself. Sometimes death, like birth, is kinder and more intimate when it takes place at home within the bosom of the family, rather than in a large institution. In the UK it’s not a medical establishment overly influence by a fear of litigation that sometimes stops this or more compassionate care in hospital being delivered, but an under-resourced palliative care system. It’s very sad when it happens. 🙁

  • NoLongerCrunching

    God, this brought me to tears. I am so sorry for what he and your family went through, and I can just imagine how proud he must have been of you.

  • Amy Tuteur, MD

    Palliative care physicians have made a big difference in the care of some dying patients, but I know that my father’s experience was not rare and we still have a very long way to go in preventing medical mistakes and providing adequate pain relief.

  • Trixie

    Dr Amy,
    Thanks for sharing your father’s story. He was a handsome man, and his love for his family comes across so clearly in that photo.

  • Box of Salt

    Dr Amy,
    Thank you for sharing your family’s story.
    I’m sorry for your loss and for your father’s suffering.

  • demodocus’ spouse

    That must have been so hard for your family and your father.

  • Amazed

    I’m so sorry. Such a terrible sequence of medical mistakes and lack of human decency in the face of a patients suffering.

  • FormerPhysicist

    I’m so sorry.

  • Squillo

    I’m sorry your family had such a horrific experience. Your father was fortunate to have such a good advocate in you. I’ve often said we need a doula program for the hospitalized old and very ill. It’s a bewildering place for strong people at the best of times; those without an effective advocate too often receive inadequate care, particularly when it comes to quality of life issues. I hope the (slowly) increasing emphasis on palliative care throughout hospital disciplines will change things for the better.

    • Trixie

      When my grandfather was dying of stomach cancer in a VA hospital, they paid an aide to sit there with him and hold his hand when no family could be there. He was scared and despite their best efforts, still had some pain. We were very impressed with how well they cared for him.

      • Sarah

        My grandfather died in late 2001 in the UK, when the cancer went to his brain. It took 2 weeks to finally kill him off, at home, and during this time he was given enough medicinal heroin to knock out an elephant. The GP saw him right. I am and have always been grateful for this.

    • Mel

      I hope that it changes for non-palliative patients as well.

      Three years ago, my father-in-law had bacterial spinal meningitis and was having severe jaw/ear/face pain while hospitalized. He was ranking it a 7 out of 10 – but was unable to talk clearly during the more severe bouts of pain. The “goal” for the day written on his whiteboard was “control pain”. At some point, a solid oral narcotic had been ordered by a physician, but the medication wasn’t making it to the room. The RN came in and said she’d get the medication…but 45 minutes went by and we didn’t see her again.

      Well, I got fed up. I wasn’t sure exactly what to do, so I went to the nurses’ station and explained the problem. The medical professionals were very nice – but explained that I would have to wait for the nurse to be free. I said “Ok.” and stayed put – right smack dab in the line of sight of everyone. After a few minutes, someone told me that I could go back to my father-in-laws room. I said that I wanted to wait for the nurse here that in a very gentle, non-confrontational voice. To change things up, I would stare at my feet and start humming random songs or start telling boring stories. (FYI, I can talk on the relative merits of different varieties of shelled and dried beans for about 20 minutes without a break – in a nearly monotone voice.) Within 10 minutes of my “bore-in”, a nurse got freed up from paperwork duty and medicine was dispensed.

      That seemed like an inefficient way of doing things, so I learned a new term. “I am officially requesting at (fill in time and date) that we speak to a patient advocate/ombudsman within the next hour.”
      That has really sped things up…

      The part that kills me is that it’s not like the nurses or doctors are bad people or lazy – they are just so horribly overworked that the quieter patients who are not complaining fall through the cracks… and so I have to become a louder complainer for elderly family members than the other patients. 🙁

      • Squillo

        It’s infuriating that it takes that level of agitation to get something as seemingly basic as adequate pain control.

        As I understand it from speaking with a number of palliative care specialists, the ultimate goal is to expand palliative care throughout the hospital–not just for terminal patients or the ICU, although that is where many efforts begin.

  • This brought me to tears. I’m sorry you had to fight so hard on your father’s behalf, he was lucky to have such a strong advocate for him and his needs in his final hours. You bring the same advocacy to bear with this blog – I have a great deal of respect for you. Your father would be proud.

  • Cobalt

    Just terrible. Pointless suffering is just that. I’m sorry.

  • Medwife

    What a horrible betrayal of trust and lack of human decency. I’m sorry you and your father experienced that.

  • attitude devant

    Oh I am so sorry. How perfectly awful. It AMAZES me that radiology takes so little responsibility for making sure results are communicated to patients. I recently had a patient call me and ask for her breast biopsy results. A biopsy done by radiology that I had not ordered and they had not sent me a report on. ‘Not our responsibility.’ It was positive. But your dad’s PCP and his urologist? Shameful.

    And his pain relief? I would have expected that in the seventies, but the late eighties? Simply incredible.

    Deepest sympathy to you. What a good daughter to advocate for him; what a gift of a daughter.

    • fiftyfifty1

      “It AMAZES me that radiology takes so little responsibility for making sure results are communicated to patients.”

      This is a systems problem that is straightforward to fix. Radiologists in our system are required to call the ordering doctor personally if they see something on film that they believe to be cancer. Then this conversation is documented in the electronic chart. It is then the ordering doc’s responsibility to communicate with the patient.The exception to this is with breast imaging. With breast imaging, the radiologist doing the reading is located on-site and reads the films/MRIs etc while the patient is waiting. If further views are needed, the radiologist orders them immediately and does them right then. Results and further plan (bx etc) are conveyed by radiologist and documented in chart.

      • Ash

        Dr A’s story on salon.com indicates that this policy was instituted after the lawsuit.

  • This brought tears to my eyes. I’m so sorry for what he went through.

  • Sophia

    I’m so sorry for your loss.

  • Montserrat Blanco

    I am sorry for your loss and really sorry that you had to go through that experience with his death. I am a medical oncologist and I swear I have never ever denied palliative medication to any of my patients. I am sorry that sometimes the medication is not enough and some patient’s pains are difficult to treat. For me, not prescribing morphine for dying patients is bad practice.

    Good news is I think pain management is getting better. I even know of a colleague that was sacked after stopping a patient’s morphine drip because his boss thought it was unacceptable.

  • Kq

    I wept. I am so glad your father had such a strong advocate.

  • ArmyChick

    That is just outrageous. I am sorry!

  • Samantha06

    I am so sorry your father went through that and I’m glad you were able to help him get the care he deserved. I totally understand as my father experienced a similar situation. I know you miss him every day.. 🙁