Monday, 16 May 2016

Miracle worker

Let's get one thing straight at the beginning here: I AM NOT A MIRACLE WORKER.  I know I like to extol my own virtues and give myself virtual pats on the back every once in a while because it's
nearly the only validation I ever get, but I can not work miracles, despite what this t-shirt says.  Don't get me wrong, I do try on a regular basis.  But invariably I fail.  I suppose I would make a pretty terrible religious icon.

Despite this admitted fact, people still expect me to perform miracles on a regular basis despite my protests.  Two recent cases highlight this rather well.

I was asked to see Mathilda (not her real name™), a very pleasant and sharp almost-90-year-old who had an abnormal finding on a CT scan of her abdomen.  She had been admitted to hospital with weakness and vague abdominal pain, and the CT scan showed that a bomb had gone off inside her.  Well not really, but that's what it looked like.  She had a large collection of fluid and air adjacent to her caecum (the first portion of her colon in the right lower quadrant of the abdomen), and this collection had invaded the abdominal wall.  I took one look and swore under my breath.

Perforated colon cancer.  Shit.

I wasn't 100% sure of the diagnosis, but I'm also not 100% sure that Donald Trump isn't an alien comedian and secretly amused that millions of people are actually supporting his presidential bid.  But my sureness in both is pretty damned close.  Despite the horridness of the scan, Mathilda looked and felt surprisingly good.  When I examined her, she had minimal tenderness over the area in question, and she wasn't systemically sick.  In fact, she felt pretty darned good (her words).  I told her what my suspicions were, how we were going to have to confirm it (colonoscopy and biopsy), and that she would most likely require a very large surgery to remove the affected colon, perform an ileostomy, and clean up and completely reconstruct her abdominal wall.  Her face remained impassively pleasant during my explanation, and she listened dutifully and quietly to everything I had to say.  I've seen that look before, and I know exactly what it means.  As soon as I finished she smiled and failed to surprise me.

"Listen Doc, I'm almost 90-years old.  I've had a good life.  A really good life.  I feel fine, I know what's going to happen, and I don't want any surgery."

I explained very carefully, though without pushing, what the inevitable outcome would be without surgery.  She would most assuredly die, possibly unpleasantly.  Some surgeons would probably try harder to talk her into surgery, but not me.  My job was to explain not only the diagnosis and the details of surgery, but also the ramifications of not doing surgery.  Once I did that and was absolutely certain she understood, she remained polite but firm - no surgery.  "We all have to die someday, Doc," she explained with another kind smile.  I smiled back, thanked her, shook her hand warmly, and left, making sure to document the entire conversation in her chart.

I got a phone call the following day from her GP, who asked me when the surgery was going to be.  My groan was not meant to be audible, but I'm fairly certain it was.  Apparently someone didn't bother reading my detailed (and admittedly excellent) note I had written in her chart the previous day.  When I explained exactly why there would be no surgery, the GP got very upset with me.  "WHAT?  Doesn't she know she'll die?  Didn't you try to talk her into it?"

"Yes she does, and no I didn't", I explained slowly.  Mathilda had made it very clear that she didn't want surgery.  She also made it clear why she didn't want surgery.  Why in the world would I try to convince a very nice (and very old) woman to undergo a procedure that she doesn't want, especially a huge one that would leave her with an ileostomy?

I wouldn't.  I didn't.  There have been times when I have tried (successfully) to convince someone with an immediately life-threatening problem to have surgery, but Mathilda was different.  She was very old, she felt well, and she wasn't actively dying.  Touching Mathilda with a scalpel would have been not only malpractice, but assault with a deadly weapon and possibly attempted murder.  Not to mention unethical, and therefore wrong.

The GP seemed to get the message at that point. Unfortunately it got worse.

Two days later (really) I was asked to see Helene (not her real name™), a woman in her 50s with severe progressive multiple sclerosis who had been bedbound for over 10 years.  In addition to being severely contracted, she was nonverbal, unresponsive, completely dependent on others for all her care, and just stopped eating several days prior.  She was sent to the hospital by her nursing home to get a feeding tube placed.  A gastroenterologist had attempted to insert a PEG for tube feeding, but due to anatomic difficulties he had been unable to.  She was therefore referred to me for a surgical gastrostomy.  Through her decline over the previous several weeks, no one had sat down with Helene's mother and spoken candidly about her condition.

So I did.

Over the next 45 minutes I learnt that her mother had been her primary caregiver over her entire life.  She had watched Helene, her only child, progressively deteriorate over time.  She knew exactly how sick Helene was, she knew that she was in a state of decline, and she knew that nature would take its course at some point, probably sooner rather than later.  And she was, however difficult it may be, ready for that eventuality.  In addition to all that, I also learnt that she hadn't really wanted the feeding tube for Helene in the first place, but her GP had talked her into it.

Sound familiar?

Now that that procedure had failed, Helene's mother explained quite convincingly and in no uncertain terms that she didn't want invasive surgery.  Helene had been able to eat about 50% of her lunch the previous day, though it took a lot of time and effort.  I discussed her options, the best ones being A) continuing to try to feed Helene orally, and B) hospice.  But again, I did not try to talk her into it.  She thanked me for being the first one to sit and talk to her like a person.

Later that day as I was rounding I ran into the internist in the hospital who was caring for Helene, and just like with the previous patient, he asked when the surgery would be.  I again found myself explaining that (and why) no surgery would be done.  Discussion, conclusion, done.  Right?

If that were the case, I wouldn't be writing about it here.

The following day I was glancing through her chart to see how much she had eaten when I saw this little passage written by the gastroenterologist:
"Recommend second surgical opinion.  Patient is not eating well and is malnourished."
Wait, wait, wait . . . what??  

"No surgery" wasn't my opinion, it was the patient's mother saying she didn't want it!  What was the second opinion supposed to say?  "Doc Bastard was wrong because the patient's mother should be forced to do something she doesn't want for her daughter who is circling the drain and passively dying"?  Looking through her chart further, I saw that one of my colleagues had already seen her as the second surgical opinion.  I'm paraphrasing slightly, but the gist of his opinion was "Doc is right, so leave her the fuck alone."

This may sound strange coming from a surgeon (though hopefully it doesn't), but not everyone needs surgery, even if it means they will die without it.  Though it may seem on its surface hypocritical coming from a guy who readily admitted that he's talked someone into surgery who initially didn't want it, but hopefully you can see the great chasm of difference between the cases.  Neither Mathilda nor Helene could have been reasonable helped by anything I could do.  Only a miracle could have helped them.

And I am not a miracle worker.

Postscript: Mathilda refused all surgery and walked out of the hospital a few days later to spend whatever time she has left with her family.  Helene's mother met with the palliative care doctor, and she ultimately decided to pursue hospice care.  


  1. You don't think you would be a good religious icon? But I already started docbastardism! Do not give in to the temptation of John Benton and his brain dead denier army! All hail the scalpel!

  2. the comment "who are doctors to go against God" complaint in the brain death cases comes to mind.
    we are mortal. mortals die, from time to time. it is the natural order of things. demanding extreme measures to keep a dying mortal circling the drain indefinitely, counts as going against God.

    in my end of the business, it is pretty standard to ask if the patient has a DNR order. some say "no, keep me alive as long as you can" and some say "yep, if I go, let me stay gone"

  3. I'm not surprised. Too many people don't understand when to throw in the towel. My mother lost a close friend over this--when my father was dying she wouldn't push him to eat and the friend saw this as akin to trying to kill him.

    The cancer got him before the lack of food mattered.

  4. I see doctors like you write convincingly that sometimes the best intervention is none at all. But the reality that I have seen as a cancer patient is that there is always another surgery, chemo or trial ad nauseum. And all it truly does is extend suffering in most cases. I want to tell my 76 year old friend that dying isn't defeat, it's part of life. But how do you do that when there is a doctor who says there is hope?

    1. I guess it depends on the perspective of both doctor and patient. I'm sure many (possibly most) oncologists have the "Always keep fighting" philosophy.

    2. the state of Oregon actually kept score, and found out that with terminal cancer, switching to palliative care frequently results in the patient living longer than aggressive treatment. - and better quality of life, as well.

    3. Ken,
      That's a really interesting find. Though the fact that you added that their quality of life is improved is to be expected - chemo is hard all around. Do you happen to know if other states have kept similar tallies, or can you tell me where you found that information? :)

  5. Do you think the descriptions of illness being a 'battle' that the patient 'wins' or 'losses' makes it harder for patients to say no to surgery they don't actually want? And if so, how should we describe it instead?
    I ask because for a long time this fear of 'giving up' or 'letting the disease win' led to surgical decisions being made for a terminally ill relative who, from a quality of life point of view, may have been better off being permitted to pass away peacefully.

    1. I think you're on to something--a battle, after all, is something you win or lose, and nobody wants to be a loser, so the pressure is on to fight, even when the sensible (and frequently compassionate) thing to do is to understand that fighting isn't going to help. I've seen a number of pieces written by women dealing with Stage IV breast cancer who say that all the emphasis on "fighting" means that those dealing with the fact that their illness is likely terminal end up feeling abandoned, because their stories don't fit the whole "shiny happy warrior" that cancer patients are supposed to be, if they want any kind of support from the people and groups that claim to offer such.

      Everyone has to decide for themselves just how much intervention they want and what they're willing to do in the hopes of getting better. Sometimes, though, nothing will prevent the inevitable, only postpone it, and at the cost of greater and greater suffering, and then what? That's when the patient, or those closest to them who know how they would feel, have to make the call.

    2. I think that's a very good insight, Anon. The way I see it, if someone has come to terms with their own condition, then dying isn't seen as a loss, but rather as a simple certainty.

    3. DocBastard, as an nurse, I want to thank you for writing this. I wish more people could understand that dying is a part of life. We are born to die. We make the most of what we have here then move along. In my profession, it is not within my scope of practice to give any type of prognosis for a patient, but I see a huge lack of this type of conversation among multiple disciplines of medicine; and as a nurse it I with whom the patients and family end up sharing the most conversation.

      Admittingly, the best doctors that will readily order a palliative and/or hospice consult are our hospitalists. They focus most of their time on patients that will ultimately require placement due to lack of support and multiple co-mordities. By the time most of these patients leave the hospital, they could have just been spared a plethora of unneeded tests, procedures, sticks, and suffering with obtusely restrictive measures and just opted for a life of eating/drinking whatever they please with a la carte pain meds as needed.

      I wish people could understand how barbaric aggressive treatment can really be with very little quality of life left.

      The movies where we have to hold down patients to stick tubes up their noses, needles in their veins, tubes up their anuses, drills in their bones, manual pressure to their chest, breaking ribs - this is not only draining to the patients, but draining for the staff who are requested to persist in performing these procedures on people who have conditions that will never be fixed this side of Glory.

      Thank you, Doc, for bringing light to this subject. Hopefully, it was bring about some good discussions among people.

    4. I totally agree. I consider myself very fortunate in this regard, thanks to the fact that my parents both executed advance directives about 20 years ago when they were doing some other estate planning, and also to the compassion, respect, and realism that the doctors who treated Dad during his final illness showed, regarding honoring his wishes and those of our family.

  6. We faced this issue with my mother - not a surgical option, but rather, aggressive treatment of pneumonia when she was at the end stages of Lewy body dementia. It was suggested to us that she had aspiration pneumonia, but given that the stuff they sucked out of her lungs looked like red jelly, I think maybe she had Klebsiella pneumonia.

    Anyway, the nursing home sent her over to the local hospital. The admitting physician very kindly, but clearly, told us that her lab tests showed that her body functions were starting to fail, and that aggressive treatment of antibiotics might buy her another 2-3 weeks... after which she'd probably end up getting admitted to the hospital again, maybe going through such a cycle two or three times more, before finally passing away.

    The nursing home doctor in charge was politely but persistently pushing a feeding tube option, in addition to the heavy-duty antibiotics. Keeping the hospital doc's words in mind, we researched the outcomes for dementia patients with feeding tubes. None of it sounded like it would help her quality of life, though it would be prolonged.

    When we said no to the feeding tube, we could practically feel the disapproval radiating from the nursing home doc. But hard as it was to talk with family and decide that we'd no longer actively try to keep her alive, we knew it was the right choice for my mother, given her own previously expressed wishes.

    I want to thank you for being one of those docs that truly listens to the patient and their family, and respects the end-of-life choices that they make.

  7. When my Mom was dying of congestive heart failure, the doctors found a small cancerous lump on her chest (too low to be technically breast cancer). We all decided not to subject her to chemo, as she was too weak to survive it. When we told the doctor of our decision, he said he wanted to do a bone scan "to make sure it hasn't spread".
    Yes, he admitted, it is quite painful.
    We asked, "Who cares if it's spread? We're not treating it if it has spread."
    "But then you'll KNOW....
    .....and you have great insurance. It will be paid 100%!"
    OHHH. Sure. Then it's OK. Let's subject her to a painful test that we don't care about, as long as it's not going to cost US anything (except a lot of pain for a semi-coherent woman).

    It took an unreasonable length of time to get him to agree not to do a bone scan. I'm very happy to hear there you are one of the docs who actually listen to their patients' wishes.

    Mom died peacefully at home three weeks later.

  8. When my time comes, I hope every physician who sees me is as wise and compassionate as you.

  9. I am glad to know there are doctors who care enough to know when not to push. Doc, good job - but you already know that.

  10. I am glad to know there are doctors who care enough to know when not to push. Doc, good job - but you already know that.

  11. Comment from DadBastard (via email):

    Excellent and spot on. I couldn't agree more with your approach to these two unfortunate women. As the medical advisor for {REDACTED}'s 750+ clients (of course, I call them patients), I have to make similar decisions almost daily. Approving a DNR/DNI or deciding against an invasive procedure (small or large) can be quite discomforting, especially when the patient is younger than I am, and especially so for those who are even younger than you. But that's what I signed up for and I always use my best medical judgement when called upon to do so.

    1. As a reply to both DadBastard''s statement regarding patients who are "even younger than you" and Doc's comment about "possibly most" oncologists, I have to wholeheartedly agree, but propose combining the two. Consider the average 66 years of life lost to pediatric cancer (avg age at dx 6) as opposed to the 17yrs lost to adults (avg age at dx 66), and the considerations become exponentially more complicated (my own opinion and experience and US stats only). It is for this reason, and the fact that quality of life is frequently much more difficulty to assess infants/children, that the constructs of Hospice/Palliative Care are so very diffrrent for pediatric patients.

      Yes, this is what we signed up/trained for decades for!

  12. I'm reminded of what happened to one of my family's cats.
    Now hear me out for a second.
    This cat was already over 10 years old well past her prime, and she didnt seem to be doing so well so my parents took her to the vet. The vet told us that she had 3 months to live unless she was given a expensive and invasive surgery that would let her live 7 months longer. My parwnts declined and took her home, deciding to let Her have a good last couple months. L
    4 years later and shes very healthy now, reguvinated in fact, as energetic as a kitten in fact. (Turns out the vet was a new guy who gave us false info trying to weed out more money. Very rarely Happens of course).

  13. I worked as a neuro nurse for four years and in that time I saw doctor "recommend" to family g-tubes be placed in patients who have had strokes and while that is alright, they didn't have conversations about quality vs. quantity of life - about how by putting this in their loved one, that they will now be subjected to increased risks of bed sores, infections of the g-tubes, pneumonia, etc... But they NEVER EVER do. This is what I have a problem with. Don't offer surgery if you aren't going to then talk about how it's to impact their life down the road. I like to see that you listen to what these women had to say and didn't try to "convince" them that surgery was "in their best interest"

  14. Doc, I will add my thanks and support for the respect that you've shown to these patients, and likely many others, in *not* trying to pressure them into additional futile "care" that truly would not have done anything to improve their quality of life.

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  16. Just because we can do procedures to extend a life, it doesn't mean we should.
    It bugs me when i hear people say "only god has the right to take a life and when he calls them, they will go"
    I point out that god did indeed call their loved one and they interfered and stopped god's wishes being fulfilled.
    I have nursed cancer patients and towards the end it wasnasty, one patient having had cancer start in his big toe and then work slowly up his leg.
    Once every 2 weeks the doctor would come in and remove the latest tumors.
    The poor man kept apologising for the stench his foot was making.
    He had one sister left alive and she was in the same cottage hospital having suffered a massive stroke.
    He had been a farmer all his life and he was accepting of what was happening, it was all part of the cycle of life he would tell us.
    We knew nothing could be done, he knew it as well and a DNR was put in place.
    All we could do was make him as pain free as possible and, when we knew he was close, we brought his sister in so they could say their final farewells. This was the only time when i saw the spark of who she had been, she was firm and told him to bugger off, his work here was done and there were the stock needing feeding in heaven and cows to milk. He smiled and off he went.
    In our family being sick is classed as entertainment and the stranger the disease the better, my uncle having a fungal infection of the liver which spread to his eyes leaving peripheral vision in his left eye and a membrane of his right retina. he proved very popular with all the consultants coming to see him. We have all said we want a DNR. To us it is pointless fighting the inevitable and surviving for maybe a few weeks or months in pain, with no dignity and getting other issues as our bodies and organs lose functions.
    I have an aunt with terminal arteriostenosis who, we were told would not see Christmas and is still going strong with excellent palliative care.
    I care for my uncle who is stage 4 renal failure with forays to stage 5, congestive heart failure, who has had 2 tia's along with a perforated duodenal ulcer, fungal infection of the liver which spread to his eyes, and a nephrostomy in his right kidney which is grossly abnormal as well as a near 3 cm stricture in his right ureter, all from his original illnesses of inguinal sepsis,cellulitis in his whole left arm (it was very red and very oozy)uncontrolled diabetes (his blood sugar was 43.7) and gallstones.
    I discussed his future care and he wanted a DNR, He is seriously thinking he may not go the dialysis route since with all his other issues it would simply prolong the inevitable and give him maybe another couple of months.

    Thank you for listening to your patients and being their voice.

  17. Hey Doc. You probably don't have time to read many books, but I very much enjoyed 'In the Midst of Life' by Jennifer Worth (she of 'Call the Midwife' fame), who talked about her time as a Marie Curie Nurse after her time in midwifery. She discusses the change from the time when she nursed, where you saw people through to the end with dignity, and more modern times, where people have been kept alive with medicine and machines, and little dignity. It's a fascinating snapshot of time. That kind of book is probably a little bit of a busman's holiday for you though ;)

  18. I can understand this on so many levels. As a hopeful future medical professional (specifically surgeon), I would never want to force someone through a procedure they didn't want. My grandmother had been diagnosed a year ago with Stage IV squamous cell lung carcinoma, and it had spread. They said she had 6-9 months, with treatment, or 3-6 without. My grandmother was a fighter, so she chose treatment. Ultimately, this past September, she was admitted to the hospital for pneumonia. My parents had told me to come home from school because this was probably it and my last chance to see her. Once I got there, doctors kept wanting to give her antibiotics and insulin shots, and it took forever for people to listen that there wasn't a point. The pneumonia had become a systemic infection, and her body was shutting down. She couldn't even eat. But it took doctors forever to understand there was no point to the antibiotics and the insulin shots. Why would we put my grandmother through the pain of these shots when she was dying anyway? Finally they listened, and she was eventually put on a morphine pump, and she passed away 5 days after I got home. While sometimes family doesn't always know best, we knew the time was coming and my grandmother was ready to go, so I wish someone would've listened to us sooner.

  19. I've told my wife on many occasions that I'd rather die than live with little to no quality of life. I'd hope that my doctors would honor my decision too. It sounds strange to some, but I'd rather live a shorter life, but be moderately comfortable and happy than live a slightly longer life and suffer.

    I'm glad there are doctors like you.

  20. This is not at all an argument against the Doc's decision to accept the patient's choice - that was clearly the only compassionate option in that case. However, just occasionally, treatment options that might look futile do turn out to have a better than average outcome.

    My mother was 62 when she was diagnosed with cancer of the bowel, which had spread to the liver. Most people will be aware that this is a Bad Thing and the entirely legitimate conversation was had as to whether she shoudl go for aggressive treatment or simply try to have as many good days as she could. She opted for the treatment and had a very hard time for the following 6 months, having a portion of bowel removed and followed up with some nasty chemotherapy. However, it seems that she was one of the very small proportion of patients who somehow "over-react" to the chemo'. It's a known phenomenon, especially with bowel cancer, but pretty rare.

    This year, 18 years later, she will turn 80 and is still playing badminton and volleyball with her "over-50s" sport group that she has attended for the last 30 years! This weekend she's off to Belgium to sing in some cathedral or other with the choir that she attends. She's had 18 years of seeing her sons marry and settle down, seeing her grandchildren born and generally having a better quality of life than I have. There's no immediate sign that this is about to change any time soon.

    I completely agree that it's very important to respect a patient's choice, especially where the situation is completely futile, but sometimes the payoff from the treatment can be worth the hardship.


    1. Ugi - What a great success story. Treating advanced disease isn't always a good idea, but it certainly can be if the patient is willing to.

    2. Thanks Doc.

      She still goes back for periodic (but ever-less-frequent) scans which still show the scarring on her liver. I think she is quite amused that scans are usually reviewed by a comparatively junior doctor on rotation who immediately thinks that something is badly wrong before his/her senior colleague points out that the scan has looked like that for the last 15 years!

      A slightly more sensitive bowel (we assume due to the missing chunk) and a confusing liver scan are not too high a price to pay for 18 good years and counting.


  21. some people would say having a doctor listen to them is a miracle in itself.

  22. A number of years ago I had a cat who got into a brawl with another cat and sustained an eye injury. It was treated with antibiotics, but over the years his sight deteriorated and then the eye became chronically swollen. Unless the eye is removed it will eventually rupture and most likely prove fatal.

    When I presented him to our long-time vet he gave his opinion that the eye should be removed. But he offered to send us to a practice specializing in veterinary eye surgery for a consult. I asked If he were your cat, would you do that? Without hesitation, he said no. I am virtually 100% certain he has no vision in the eye and at present we have no way to restore it. I said so go ahead and remove it.

    A few days later I was conversing with a family member of a homecare patient I was caring for. On hearing this story he said But how do you know he wasn't just trying to get the money for the surgery? I said I've known him a long time, and I accept his word there was nothing more that could be done. He had trouble comprehending my willingness to believe him.


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