My father died 30 years ago today

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My father died 30 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 is now a lawyer and 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 my father.

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 — my 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.

It’s been 30 years and I miss him every day. Believe me, I have no illusions about the state of contemporary medicine.

  • This is one of the best posts you’ve ever written. I’ve had similar experiences with family members. Ironically, it drove me more into the natural health camp and questioning all things medical. I think of myself as a health care consumer buying a product that I intend to be informed about. It seems to have driven you in the opposite direction. Not a judgement, just an observation.

  • KeeperOfTheBooks

    I have no doubt that 30 years later, it still hurts. My sympathies on for his loss. May his memory be a blessing to you and your children.

  • Russell Jones

    Thanks for posting this, Dr. T. My. dad died back in 1986 at the end of an extended hospital stay, and I still miss him every day.

    And thanks too for exposing one of the more idiotic false dichotomies in the history of informal fallacies, one heavily favored by anti-vaxxers: either you embrace the lunacy of Mike Adams, Andy Wakefield, etc. or you’re a slavish, unthinking devotee of the medical establishment.

  • Winston Jen

    What a bunch of evil cunts. I would’ve raped the doctors and nurses with a rusty knife. When they were bleeding in agony, I’d sell the footage on the black market, and use the proceeds to repeat the horror on right-wing voters.

    It worked in the French Revolution.

    • StephanieJR

      Go back to 4chan, edgelord.

      • rational thinker

        This one seems disturbed or 13 I cant tell which.

        • Winston Jen

          Are you defending callousness in the face of suffering?

        • AnnaPDE

          Is this an either/or anyway?

      • Winston Jen

        They deserve it. Just like Mother Teresa deserved it. Even Bill Donohue admitted it: she wanted the poor to suffer.

        https://youtu.be/b6XRsJI6YxI?t=289

  • La Piranha

    I’m a palliative medicine physician. We’re a new specialty, with only 9 years of requiring fellowship to practice. I practice at a tertiary referral center and cancer center, and my whole job is to help take care of medically complex patients, most of whom have a short prognosis. We have the discussions with patients and families about what would be important if time were short, and we are part of residency training. Taking care of people at end of life is important. Families remember those moments forever, and we have the tools to prevent a lot of suffering. I’d like to think medicine is changing for the better, with the recognition that at some point the treatments won’t work, but that there is still care to be provided.

    • Winston Jen

      Fuck your care. Al Qaeda has more compassion than you. The 9/11 hijackers got to die instantly.

      Dynamite and suicide vests are also MUCH MUCH MUCH cheaper than morphine and chemotherapy.

      • La Piranha

        ???

        • Winston Jen

          Are you literate?

          • La Piranha

            Morphine is likely cheaper than dynamite. Not sure why that’s a comparison though?

          • Winston Jen

            Because the 9/11 hijackers died instantly.

            How much does morphine cost per milligram?

          • La Piranha

            You can look at goodrx as well as the next person. Looks like 600mg of morphine solution is $14 to $20 currently. Still not sure where the connection with Al Qaeda is though. Dynamite for end of life care for cancer patients seems… not ideal.

          • Winston Jen

            Dynamite = suicide bombing = instant death = PAINLESS.

          • rational thinker

            End of life care and suicide are different things.

          • Who?

            Quite so.

            Not to mention the real risk of taking someone else with you, the utter horror for the folks who have to clean up after a bomb, and the incredible intrusion on surviving friends and family, neighbours and anyone in the vicinity after a deliberate explosion.

          • Winston Jen

            At least you die instantly.

            And rational thinker: have you ever seen a cancer patient scream in agony? Is your best solution to dose them into a coma for weeks?

          • rational thinker

            “have you ever seen a cancer patient scream in agony? Is your best solution to dose them into a coma for weeks?”

            Actually I do know a lot about agonizing horrible pain so bad I wanted
            to kill myself and my doctor did not seem give a shit. It took 2 years
            and a new doctor before they did any testing that proved my pain was
            real and agonizing, then something was done about it. This is not about pain patients this is about end of life care. There is a big difference. Would you want to spend your last day or hours in horrible pain struggling to breathe or would you want to be comfortable so you can say your goodbyes to family and friends.

          • Winston Jen

            I’d want to be comfortable, of course. But that isn’t always possible, even with the best medical science.

            https://www.youtube.com/watch?v=4OtI3AaCnH0

    • Mishkin

      Thank you La Piranha for the work you do. Those of you on the frontlines make all the difference. I never thanked enough those that helped us along the way (a very tragic situation…when medical mistakes happen they really HAPPEN), but they made an unbearable situation slightly more bearable.

  • Allison

    Some 25 years ago, my grandmother went into the ER, running a fever and complaining of a sore throat, headache, and severe exhaustion. Adding to her concern was that her husband was severely immunocompromised due to high-dose prednisone for an autoimmune condition – she couldn’t afford to give him whatever she had.

    They diagnosed a sinus infection and sent her home with an amoxicillin prescription. No one thought to test a 70-some year old woman for mononucleosis. But she had it all the same. Antibiotics are useless for mono, and amoxicillin in particular can cause complications. It usually causes a rash. In her case, it triggered an autoimmune response. It was not explained in much detail to me (I was only 10 or 11 years old), but it was interfering with her blood oxygenating correctly. She died of the resulting complications.

    • PeggySue

      How horrible. I am so sorry.

  • FormerPhysicist

    His memory is a blessing, and you have done so much good with this horrific experience. I’m sure he would be phenomenally proud of you,

  • Blake Lee

    I’m so, so sorry. This made me bawl. My mom died on October 1st last year of adenocarcinoma tumor of origin was colorectal in her cecum. She wasn’t dxd until she was Stage IV and it was in her liver. She was only 59. Her primary care provider told her it was her gallbladder. I fought hard against medical error and health insurance company treatment denials. She died a year after her dxd. She was vibrant, opinionated and funny. I miss her so much.

  • Great post. I’m sorry you went through this. I hope the advocacy of people like you means that this experience will be less common.

  • Emilie Bishop

    I’m so sorry that this happened. In some ways, little has changed. One of my foster daughters has spina bifida and a host of other medical issues, and she had a huge team of doctors at our local children’s hospital. Those folks could not talk to each other and look at the big picture even when she was inpatient. It led to delays in care for serious feeding issues and to me being made to feel crazy for insisting something was still wrong. It is horrible how specialists pass the buck or refuse to look beyond their narrow scope, and apparently it hasn’t moved forward much in my lifetime. Maybe by the time I have grand babies?

  • Alia

    When my uncle was dying of colorectal cancer, they wouldn’t give him morphine – and on the grounds that it is highly addictive! As if this could be a problem for someone with untreatable cancer. And then my mother, normally a very kind and gentle person, and at that time still a practising nurse, burst in and demanded proper care for her brother – and he finally did get pain relief. He died a few days later.

    • rational thinker

      I would have asked the moron who said they dont want to give it to him cause its highly addictive how the fuck they even got into a medical school. That is just horrible sorry for your loss.

  • Laura Thomas

    Yes, I agree, deadly mistakes are made in the hospital all the time. I am grateful to relate a better experience I had when my brother, age 51 and diagnosed 17 days prior with colon and liver cancer, was dying in the ICU. He was conscious and aware, but his lungs were filling with fluid and he was clearly uncomfortable. He wanted pain relief, which was going to be morphine, but we all knew what that meant. We told him his options. We had the intensivist explain to him what morphine would mean to him. And we prayed- but it was an agonizing decision for a dying man whose mind and senses were still very much alive. My bother chose to receive the morphine and was immediately relieved and sedated. He passed away 15 minutes later.

    • PeggySue

      I am happy that you shared this story and that your brother was comfortable in his passing. I do have to say, though, that patients in hospice care often receive morphine for days and even weeks at a time. Of course, every situation is different, and your brother was likely very close to death, even if alert, when the morphine was given, but starting morphine for symptom control doesn’t always mean that death will occur so quickly. It’s a topic patients, families, and doctors need to discuss.

  • Mariel R

    Did the doctors who made the mistakes face any consequences for their (lack of) actions?

  • no longer drinking the koolaid

    And this is why physicians, nurses, and other health care providers are such PITAs when it comes to care. We know what should be done, want it done, and want it done right the first time and every time.

    I know I’m a PITA when it comes to my husband or the now grown kids getting care and I embarrass them by asking questions of the docs and nurses until I’m satisfied with the answers. I’d rather they felt embarrassed than have things overlooked or dismissed, or mistakes made.

  • Charlène Fortin

    I remember about 10 years ago, working in a nursing home, and having a doc refuse morphine to a very old woman in end-of-life care for the very same reason. Nowaday in active care I’m happy to say the protocol for respiratory distress in end-of-life patients is much, much better, and we never leave them in pain.

    • mabelcruet

      In the UK, we used to have a national pathway for treating terminally ill patients. This was the Liverpool care pathway, and it provided guidance on symptom relief and pain management at the end of life.

      Unfortunately, the media (mostly the Daily Mail) carried out a sustained attack on the pathway, describing it as a death pathway that led to patients dying whilst being starved to death or dehydrated to death. The pathway didn’t offer rigid and fixed rules-it said that clinical judgement should be applied on a case by case basis, and in some cases, withdrawal of fluids in the last hours of life was appropriate. There were also guidelines about not orally feeding the patient in the last hours of life on the grounds that altered levels of consciousness could lead to the patient choking or aspirating food, and that in the last hours patients generally wouldn’t be feeling hungry or thirsty, and so feeding them had too many risks. The guidelines also said that determining if the patient was genuinely at the end was difficult, and there were allowances for this-if the patient survived longer than expected, feeding and other treatments should be re-instituted.

      It really did improve pain and symptom management in end of life patients, and it made sure that every patient had access to optimal care. Sadly, the media decided to spin this as killing off patients quickly to save money, or deliberately excluding family members from having a say in treatment, when there was no such thing-the care pathway specifically said that family members should be involved in decision making. The pathway itself wasn’t at fault, it was just that some medical/nursing staff interpreted the guidance as completely inflexible and wouldn’t reconsider various options. In the end, it was withdrawn because of the adverse publicity and nowadays its up to various clinicians, hospitals and hospices to do what they think best, which means that there is considerable variation between end of life care.

      My dad died in severe pain-he was on a syringe driver with morphine, antiemetics and sedatives the last few days of his life. This was prescribed by the oncologist and the pain specialist but there were multiple issues because certain nurses decided that it was too high a dose for him so they turned it down, leading to him being very unsettled and delerious with pain. Just one of the many complaints we made about him, it was utterly appalling and cruel.

      • Mel

        In the US, the wacky idea to create a medical code to facilitate billing to insurance for doctor-patient discussions about end of life care got conservative-morphed into “death panels” thanks to Sarah Palin and others.

  • mabelcruet

    I don’t think any medical professional would disagree with you: the practice of medicine is as much art as science. We try and base what we do on hard facts and data, but care delivered by humans is always going to have an error rate. Even in my speciality, pathology, there is a recognised error rate of around 0.5-1%. In my job, I have a sample of tissue on a glass slide to look at-inert, unchanging, something I can show around to other colleagues and take my time over. Its not a living, breathing patient with physiological and biochemical parameters changing every second, it’s not something I need to report instantly in a emergency situation-I can generally take my time and consider opinions, but even then, there are errors made occasionally. Its inevitable-we have policies and systems in place to reduce errors, but it’s never going to be eliminated as long as we have human patients and human doctors.

    The difference is, significant errors in conventional medical care have to be addressed. We have regular morbidity and mortality meetings to discuss cases and work out what went wrong. It’s not perfect, but its continuously improving. Our errors drive change: look at the maternity problems we have had in the UK in Morecombe Bay and Shrewsbury and Telford. Horrible issues with preventable deaths, but on the back of that a nationwide programme has been rolled out to ensure that all stillbirths are investigated to the same high standard by an independent team with strong guidelines in place to disseminate learning points, and a formal register of deaths, causes and factors to hopefully improve care in the future.

    A doctor who makes an error that results in harm to a patient can be punished for it: doctors can be held to account for their failures, and end up losing financially or professionally, getting censured by their professional bodies, being struck off in the worst cases. We have to be indemnified to work, at a high personal financial cost, we have to be insured. No one sets out to harm patients, but if we do, there is at least some retribution. ‘Alternative’ practitioners aren’t insured or indemnified, some types aren’t required to be registered with any form of professional organisation. If they make mistakes, all the patients can hope for is a potential criminal charge of assault perhaps, or reckless endangerment. Otherwise, the practitioner simply writes it off as ‘this baby wasn’t meant to live anyway’ and moves on to the next victim, never learning, never improving, never developing their skills, never taking responsibility.

    Everybody makes mistakes, but a professional takes responsibility.

    That said, lying to a patient isn’t justifiable. Lying about test results is utterly reprehensible. The General Medical Council in the UK make it very clear that the responsibility to act on test results lies on the person who requested the test, not on the person carrying out the rest. So with your father, the doctor who requested the chest x-ray in the first place would be deemed the one at fault. I know it isn’t any comfort, but I hope that the clinicians involved in your dads care (and the attempted cover up of errors) were dealt with appropriately and recognised how badly they had failed him, and learned from that.

    • Ozlsn

      Same in Australia – the person ordering the tests is responsible for conveying results to the patient (this varies a bit in emergency where the triage nurse may order the tests but the responsibility to discuss results will lie with the registrar.)

      We had an absolute fuck up of a case here last year which ended with a neonatal death and very nearly a maternal death as well. The hospital network involved has gone ballistic with education and updating training of staff. Hopefully at the very least the next person presenting with similar symptoms is listened to and receives appropriate treatment.

      • mabelcruet

        We had a problem here with lack of communication-there are a number of nurse-led endoscopy clinics that our local GPs can refer patients directly to. We had 3 cases of missed malignancy where routine gastric and oesophageal biopsies were taken by the clinic nurses and the pathologist diagnosed malignancy, but the pathology report wasn’t reviewed by anyone. We discovered that without a named clinician, the reports were sent to medical records for filing with no one taking responsibility for follow-up. It was only when one patient went back to their GP with the same symptoms that this was discovered-the GP was able to see the pathology results on the system and questioned why the patient hadn’t been referred to consultant led care.

        There was a huge investigation-initially they tried to blame the pathologists, saying that they had a duty of care to the patient and the pathologist should have flagged up the diagnosis as being unexpected. But to whom should it have been flagged? There was no named consultant in charge because it was a nurse led clinic with no clinical oversight. The clinic nurses said it wasn’t their job to refer to a surgeon or oncologist, they were there to do the biopsies only. At the time, this wasn’t known by the pathology department-they thought that the clinical staff had a system in place for dealing with this sort of result, but they didn’t. The reports were going back to the clinic, but were simply left sitting on a desk unread, then being sent off by the clerk to medical records unactioned.

        At least now there is a system in place with streamlined multidisciplinary protocols.

  • Susan Lemagie MD

    As a physician, I couldn’t agree with you more. Physicians have been so slow to recognize our role in medical errors. If you don’t care about the patient, you can’t care for the patient. My father also died due to medical errors and bad judgment, brought on by physician overwork and fatigue. The system doesn’t work because we are brought to our knees overloaded by sleep deprivation, and lack of direct contact with our patients, now exacerbated thanks to the EHR.

    • Ozlsn

      It always amazes me that shift limits are not enforced. We know the risks of fatigue, that it is detrimental to both patient care and to the staff themselves. Yes it would cost more to employ more staff – but it would also reduce errors and burnout, which cost a lot more.

      • AnnaPDE

        Yes, in companies where there’s public scrutiny and therefore an incentive to have proper OH&S practices, they go overboard with just how compliant everyone needs to be. Including the kind of rules for office staff that really only make sense in a mine site environment. My company contracted for some of the big miners in Australia and we heard daily about how not to work at height unlicensed, maintain 3 points of contact while walking on the stairs (impossible unless you have 2 handrails, and there was only 1), and how important it is to not work or commute while fatigued. All this when we basically sat on office chairs and built computer simulations.
        In contrast, it’s apparently A-OK for a doctor to do tricky surgery with potentially unexpected problems popping up at the end of a shot that’s essentially an all-nighter. The mind boggles.

      • swbarnes2

        My understanding is there are also a higher incidence of errors at hand-offs; so shorter shifts will lead to errors of that kind.

        But presumably, that could be solved with better documentation, while fatigue isn’t really fixable.