Family of 19-Year-Old Ignored By Doctors For 'Googling' Symptoms Get Apology For Her Death

[bananas]

http://www.msn.com/en-us/health/medical/family-of-19-year-old-ignored-by-doctors-for-%e2%80%98googling%e2%80%99-symptoms-get-apology-for-her-death/ar-AAbNXoT

Family of 19-Year-Old Ignored By Doctors For ‘Googling’ Symptoms Get Apology For Her Death
2015-06-18

It's the worst kind of cautionary tale in medicine: a tragic death that may have been prevented if only doctors had been willing to listen to their patient's concerns.

But this one carries an particularly 21st century twist to it: Doctors told 19-year-old Bronte Doyne and her family to "stop Googling" her symptoms after they brought up the possibility that her rare liver cancer had returned. By the time she was readmitted to the hospital in March of 2013, it was already too late and she died ten days later on March 23, only 16 months removed from the day she first sought treatment for suspected appendicitis. Now two years later, the hospital that managed her care is finally formally apologizing to her family for their fatal lapse in communication.

<snip>

Attempts to get doctors to pay attention to her ailing health fell on deaf ears, as Bronte and her family were ignored when they inquired about the chances of her cancer returning, relying on information about the disease from the Fibrolamellar Cancer Foundation.

"It's not just some pathetic website on Google, it's been endorsed by the White House in publications, and was the only contact we had to get some awareness about this disease," Lorraine Doyne said, according to the Nottingham Post. "But that information was dismissed here. I told the clinician that I knew what was happening to my daughter and something needed to be done but I was just told to 'stop Googling'."

<snip>

[Lindsay]

1. So much for being expected

to be "informed consumers" of medical care.

[bananas]

2. Cancer victim's mum who was told to "stop Googling" child's disease is making film for NHS

http://www.nottinghampost.com/Bronte-s-Story-help-patients/story-23249837-detail/story.html

Cancer victim's mum who was told to "stop Googling" child's disease is making film for NHS
By Nottingham Post | Posted: October 18, 2014

THE mum of a 19-year-old girl who died from a rare liver cancer is working with city hospitals to improve the way staff talk to families.

<snip>

After Bronte's death, her mother Lorraine Doyne contacted Nottingham University Hospitals Trust with a number of complaints over the way she felt the family were treated.

Her story will now be presented to staff in a film to help them support families in similar situations. In her letter, Miss Doyne outlined several incidents including failure to inform the family of an appointment and of full explanations of discussions between medical staff. Other complaints included one that the family were told to "stop Googling" Bronte's condition.

<snip>

Following discussions with the hospital and its complaints team, they are now developing a DVD about Bronte's story that will be used to educate staff. The film, Bronte's Story, is due to be presented to Nottingham University Hospitals by the end of this year.

<snip>

[SunSeeker]

3. I had a similar experience, sadly. So awful for her family.

[haikugal]

4. But, but, we're number 1!!

It's infuriating to take the time to educate yourself on your physical ailments and treatment to find your doctor poo pooing you and acting like your a crank just because you know more about it than they do. I'm not saying all doctors but enough, and important ones like GI docs in my case.!!

How sad and unnecessary this death is. My heart goes out to her family....

[redruddyred]

10. I know more than all of docs about everything that's wrong with me. and I don't even know that much

GPs are massively ignorant on neuroimmune disease, and the cdc doesn't think it exists.
it's not a coincidence that this is a teenage girl. women consistently have their perceptions questioned esp at the drs office. young women (the group most synonymous with SEX and nothing else) are taken the least seriously of all.
of course, even if they're wrong, you still get billed.

[Jamastiene]

29. It is like that in my family too.

We have hereditary diseases. Yet, doctors won't listen to us until something dire happens. Of course, it was almost too late for me last year when I had a heart attack. It definitely is too late for my cousin. She had been diagnosed with an aneurysm before but they didn't do anything about it. She went to the doctor because her head was hurting really bad. He told her to get out of his office and not to come back with "just a headache" and to go take some Excedrin. She died just after pulling out of his office.

Doctors don't listen to women. We can go in with our foot severed and they will ask us when our last period was and ignore the severed foot. I don't know if it is like this everywhere, but here, a man can go in with a minor ache and get prescription strength pain pills.

Women have to suffer. Us and our silly headaches and heart attacks.

[redruddyred]

39. that is horrible but sadly not shocking

your cos' doc's behavior was clearly abusive and I hope you sued his pants off. there need to be consequences for that kind of behavior, and it doesn't seem like there are.

I do medical activism on the side, and I learn all sorts of things I'd rather not. medical scientists, doctors, people who can really make a difference opt instead for $$$$. and a lot of them have their heads stuck way to far up their own asses to really consider the other sides of the issue. there's too much old money in medicine, and the people who get accepted into med school probably are for all the wrong reasons. I studied math/physical science, and that kind of behavior would never be tolerated in my field. doctors need to fix their shit.

[salib]

14. I hope you realize that this is the UK National Health Service, not the U.S.

Probably why her mother is so keen to work with the hospital to prevent things like this from happening again.

It has always appeared to be a MUCH more "we're all in this together" type of relationship between the British public and the NHS.

[haikugal]

26. No I didn't realize, thanks for that...I didn't click on the link.

I'm glad the hospital is working with the mother and at least apologized, but it seems that this attitude doesn't know any nationality.

Unless a doctor has a disease or is knowledgeable in something (the latest information) they aren't really open to what a patient brings with them. I can't even get my GI guy to think outside his box...

It's very frustrating and I've ended up scouring the web until I found a group of people suffering with the same or similar problems who are knowledgeable and compassionate. We support each other with information and kindness...they have similar experiences with GI doctors as I've had. A few have found doctors that are open and a few have doctors that are knowledgeable.

Anyway, I feel so bad for this family.

[truedelphi]

5. People in this country die left and right due to doctors' dismissal

of symptoms.

There are still around 750,000 medical bankruptcies a year, and many of these occur due to doctors waiting till the last minute to do the right thing.

By then, a situation that could have been remedied cannot be, or at least not without a massively invasive (and expensive) procedure occurring. And guess what? It is then that patient's family that has to pay for the higher costs, not the doctors who had proven themselves inept.

[Dustlawyer]

23. Specially since they made it next to impossible to sue doctors and hospitals.

While my doctor is off on maternity leave, I saw another doctor at the large medical group that HAD to cover some of her patients. He would not listen to me as he ordered another nerve conduction study for my small fiber neuropathy. The 5 I had early on that all show normal we're not enough I guess. Large fiber neuropathy causes slower response, small fiber does not. Now I will have to pay co-pay etc for this test I don't need
To top it off, the nurse takes me from the exam room to the doctor where I am given a chair in the hallway in front of the nurses station where he proceeded to discuss my case and medicines in front of 8-10 people and anyone walking by. I should have pitched a HIPPA fit, but I drove 2 hours to get there and had to get a prescription as I was out of meds for my condition. I will next visit though, the arrogant Bastard! Any they say lawyers are bad!!!

[awoke_in_2003]

30. My wife has neuropathy

and only hydrocodone seems to help. Out of desperation we tried this. So far, it is working for her.

http://www.amazon.com/FRANKINCENSE-MYRRH-NEUROPATHY-2-OZ/dp/B003B2RJLM

On edit- it does stink to high heaven. But if it relieves some pain it is worth it

[truedelphi]

37. Thank you for this suggestion. My spouse has had neuropathy-related pain in

the past and although it is mostly gone now, it will be good to have an alternative to Lyrica.

Lyrica is very expensive, and after a while, it often zombifies a person. You pretty much lose any motivation to do anything.

[awoke_in_2003]

38. My wife tried Lyrica...

she was sitting at work and started wondering what it would look like if she took the razor she was holding and sliced her co-workers face. No anger, no emotion- just wondering about it. She called her doctor, took the rest of the day off, and never took it again. Luckily, she caught what was happening before anything bad happened.

[truedelphi]

40. Well, at least it was her co-worker's face at risk -

And not that of her loving spouse!
(I have a dark sense of humor.)

Seriously, though, the notion that so many medications do carry that warning "If strange ideations present themselves, it may become necessary to stop taking the drug," does give a person pause. And I doubt many doctors discuss the risk thoroughly enough with patients.

I am very glad for your wife that at least she caught herself, mid-thought, and was able to do the right thing.

[awoke_in_2003]

41. I thought the same thing at the time

[Triana]

6. Doctors need to stop poo-poohing googling. I've mentioned to my Doc

that I google things and she sneered at it.

Doctors should listen to their patients and encourage them to be informed, not sneer at and ignore them. Idiots.

[LiberalLovinLug]

12. I've had a similar response

From two different doctors. Both treated me like a child, or that I had been only listening to hearsay, and that the only opinion that counts is his and whatever tests he may or may not approve of.

I can understand the knee jerk reaction, on the surface they don't want to be second guessed, or worse embarrassed and upstaged by the patient, but they have to look at the benefits. Look on it as patient and doctor working together to find a solution. Sometime doctors don't have the time to investigate new treatments etc..Of course one would defer to the doctors opinion, but they should look on it as a patient helping them, not hindering them.

[Triana]

13. +1

dammit.

[Duppers]

16. Same here!

Great post, LiberalLovingLug. You describe my physicans attitudes exactly.

I hadn't realized that this arrogant, defensive attitude is so pervasive.

Sad commentary on the attitudes of medical professionals.

[nilram]

19. wow, what a sad doc. I just had one thank me

profusely for bringing in a particular journal article.

[haikugal]

27. Now I know how to spell and write..

Poo-poohing! Thanks...I was too hot and sweaty to look it up...

Oh, and I agree!

[mopinko]

7. i hope she sues.

this was a RECURRENCE of a cancer. how the hell does a doctor not listen to that?

i have had drs sneer at me for "asking dr google", and guess what? i was right.
such entitled assholes so many of them are.

[Ms. Toad]

9. Wow! I didn't catch that the first time through.

I would fire that doctor so fast his head would spin.

[Ms. Toad]

8. I get that all the time - and unless they are longstanding doctors of mine, they get one chance

to change their tune.

I have diagnosed too many conditions they missed (all confirmed by medical testing), developed too many treatments, and come up with too many disease theories (later adopted by the medical support societies for the conditions) to tolerate not being taken seriously.

If a new doctor doesn't pay attention, especially when I make it clear that I am reading medical journals and reputable hospital sites (Cleveland Clinic, Mayo Clinic), they don't make it to the second appointment.

I understand the frustration with the symptom-of-the-day parade I am sure they see. But they also need to listen carefully enough to sort out whether the patient understands the difference between a reputable site for medical information - and one which is dangerously uninformed.

Particularly with liver issues, the symptoms are vague - but an attentive doctor should listen carefully and spend enough time to have a real sense of whether a simple and relatively inexpensive set of liver function tests are warranted. Bottom line, there is virtually no medical risk to doing a preliminary AST, Alk Phos, and ALT tests - which may tell the doc nothing, or it could be a cue to start looking for a cause.

GRRRRRR.......

[Stonepounder]

11. Thank God for my doctors!

I have self-diagnosed both my gall stones and my Menier's Desease. Both times when I brought up the possibility to my PCP he listened, thought about it for a minute and replied, 'Yes, it could be that' and immediately referred me to a specialist who confirmed my self-diagnosis.

I agree with other posters that if a doctor won't at least explain to me why he doesn't think my self-diagnosis is a likely candidate then I'm on to another doctor. I don't claim to be a doctor and I don't even play one on TV, but I know my own body better than anyone and a doctor owes me at least the courtesy of respecting that.

I learned that about 10 years ago when I went to the doctor and complained of extreme fatigue and was told 'get more sleep'. Later I went back and complained that my feet and ankles started really hurting after walking even short distances and was sent to a Podiatrist. It was only when I passed out in the garage one evening that the ER doc checked my heart and called for a consult with a cardiologist who scheduled a triple-bypass 36 hours later. (Fatigue and foot and leg pain are both symptoms of coronary insufficiency. I was lucky that I didn't just have a fatal heart attack.)

[Curmudgeoness]

20. "I know my own body better than anyone".

Every doctor should have a giant poster that says this in every exam room. I am sure that there are people who complain about every little thing, but when the patient is not one of those, and has serious complaints, they should listen.

I have a few experiences in my life that would have been much better if the doctors had listened to the patient and put one and one together.

[Marthe48]

15. Such sad news

My sympathy to the family and hope that the loss of a 19 year old woman opens some ears. It is past time.


I hope every family that is unfortunate enough to have a disease that isn't common will either make their doctor listen, or find one who does. It is senseless to loss a loved one because a professional is stubborn. That is not professional.

[neeksgeek]

17. Twice I've had doctors tell me I was imagining something.

The first time, I was 11 and my parents agreed with the doctors. What happened was, I broke my arm. Typical boy, I played rough. Anyway when they were cutting the cast off several weeks later, I told the doctor that the small power saw was cutting my skin. He assured me I was wrong, that it was just vibration. Anyway when they got the cast off, sure enough, I had a nice straight (but superficial) laceration about four inches long.

The second time was much more recent. I had symptoms of a "very rare but potentially fatal" side effect to a new medicine. Basically a full-body rash that could turn into a condition where one's skin literally falls off. So I called the doctor, and told her my symptoms. She said it was nothing to worry about, that such a reaction was really very unlikely and I was over-reacting. With the cast-removal experience in the back of my mind, I insisted that it was really happening, so she scheduled me to come in to her office. The next morning, when she saw the red bumps all over my body, she apologized very profusely and told me I was the first person she'd ever seen actually have this rare reaction.

I know that they are the experts, but their first order of business should be listening to their patients.

[Curmudgeoness]

21. You were the "first person she'd seen"

with that RARE reaction! Yes, that is probably true, because it is RARE.

I have that same problem about an adverse reaction to Valium that doctors do not believe. Well, except for the doctor who first gave me Valium for a office procedure....THAT doctor will never ignore someone who says that they will react like they are on speed when given Valium.

[avebury]

18. I hope that the family sued the hospital and doctors for malpractice.

An apology just does not cut it.

[demigoddess]

22. have had some misdiagnoses from doctors

one would not believe what I later found out was the most common symptom for cancer in women. Tried another doctor who said I had bronchitis. Third doctor found the cancer.

one said there was no way in the world I was pregnant, I was, three months.

one was convinced my newborn daughter was Down's syndrome, and she wasn't.

one wouldn't believe my daughter was sick, she had a kidney infection and was showing first signs of hypothyroidism.

I think there are more, if I think harder.

[LittleGirl]

31. Glad you mentioned hypothyroidism

which runs rampant in my family, me included. Unfortunately, I wasn't diagnosed until I was over 50. I had all of the classic symptoms but no doctor would listen to me. One of the last doctors I went to said she wouldn't check me for Hashimoto's Thyroiditis was because I didn't have a goiter! I've never had a goiter and discovered when I read The Root Cause of Hashimoto's Thyroiditis by Izabella Wentz that there are two forms of this auto immune disease. One with goiters and one without them (the gland just shrivels up). My niece had her thyroid removed at age 18.

There are many facebook groups to share patient stories. Hashimoto's 411 (which last check has about 40k members) and Living with Hashimoto's (which has about 20k members). Every single patient complains about symptoms that are ignored and told that they have nothing to do with thyroid disease. The Paleo Mom posted 300 symptoms that can be attributed to hypothyroidism. It's disgusting what I had to endure all of these years and I'm finally in remission. It took finding a Naturopathic doctor (who also has it) and change of diet, change of meds, HRT replacement and supplements for our known vitamin deficiencies. There is a patient working on a docu-movie called Sick to Death which is going to be released this fall I believe. Check it out.

[demigoddess]

35. my daughter was 2 months old at the time

born with birth defects and when she stopped growing they just said it was normal. She had all the symptoms, anemia even on iron formula, heart murmur from anemia, no growth, low body temperature,but they would not just do the blood test!

[HeiressofBickworth]

24. The WORST doctor I've ever run across

was when my then-husband was in the Air Force; we were stationed in Germany (1966). I was being treated for a bladder infection and instead of getting better, I got worse, much, much worse. I was also about 6 weeks pregnant. I went to the base hospital where I had to sit in a hard wooden chair for several hours before being seen by the quack. While listing my symptoms, he was poo-pooing me, making little of how sick I was reporting. I then told him that I was vomiting blood. He said oh, I doubt that. He said that military wives tend to be a bit hysterical. So I bent over and vomited on his floor, pointed to it and said see, blood. He finally decided to admit me to the hospital and the first time they took my temperature is was 105.8 -- the nurses were visibly upset. And, of course, I lost the baby. And, of course, there was no recourse against the doctor -- military, don't ya know.

FYI: I later had a lovely baby girl in an American hospital with my mother's ob/gyn as my doctor. Lovely baby girl is now 47 years old. I've never forgotten the deplorable medical care I got at the base hospital in Germany.

[LittleGirl]

32. I'm so sorry to read this

I'm so happy you were able to have another baby.

[calikid]

25. My PCP Poo pooed what I had googled.

He said my symptoms didn't match the AMA's . When I finally got to see the specialist, he listened to my story and then he Googled the AMA sight in front of me and found five different variants of my condition, (one which included my symptoms) not just one type my PCP said there was. I will see my very young PCP tomorrow for a routine checkup and tell him about his ignorance.

[Jamastiene]

28. Plus, doctors routinely ignore women to this day.

It has happened in my family far too much. One example: My cousin died a couple months ago after the doctor told her to take some Excedrin for a really bad headache and not to come back to his office with "just a headache" again. She had an aneurysm and he knew it. Yet, he didn't check her and just sent her home with a scolding to take an Excedrin. She managed to get out of his parking lot onto the road, then pull off the road on the other side. She called home and said the headache was getting worse in the few minutes since the doctor told her to get out of his office and go take some Excedrin. She didn't know what to do, because the hospital would just listen to the doctor and stick with the same thing he said. That's what they do here, no matter how inept some of these doctors here are. She died on the phone with my aunt, while my uncle tried to get there in time to drive her up to Moore County for real medical care. The hospitals and doctors are pretty much all in the same area here. My cousin died across the street from both the hospital and her doctor before my uncle could get to her.

Doctors won't listen to the women in my family. We have to go through years of pain until something really serious happens and they HAVE to finally listen to us. They cop an attitude if we ask for any kind of help for problems we have. I'm sick of it. I wish my doctor from when I was a kid was still practicing. I would give anything to have a competent doctor again.

Damn shame people have to die because of assholes who won't take the time to double check.

[Alkene]

33. My wife's cancer progressed to stage 3...

before our doctors finally acknowledged there was a problem.
For years we tried to find out why she felt so bad.
She died.
I should have done more.

[bemildred]

34. Arrogance makes you stupid. nt

[polly7]

36. When my Dad first got sick I stayed up sometimes all night

googling his symptoms, and knew before the doctor even told, us after all the tests and delays and transfusions, what he'd been afflicted with. I was also given a few dirty looks and some of my questions ignored - it made me so angry. His life was literally on the line. I found out too, it was caused by the benzene from the flare-pits he'd been lighting without a mask for thirty years (they didn't even have access to them and weren't aware how dangerous it was). When I asked about that, he may as well have told me I was crazy, the way he pooh-poohed it. Again, I was right. I asked about bone marrow transplants - he finally agreed to ask the specialist about that (there are nine of us and many, many grandchildren - the odds are that one of us would have been a match) but by then my Dad was very weak and the specialist said he probably wouldn't survive it. All the delays, when I fucking well knew what he needed - he shot himself after going for months for painful tests, treatment that didn't do anything. I know that he thought it was hopeless and wanted to spare us the agony of seeing him suffering - but we'd only just begun. He'd just sold all his farm stuff and wanted so badly to finally live a life where he could visit with the boys for coffee, enjoy his grandchildren, just relax after a lifetime of very hard work and sacrifice.

I now have my own doctor who's impressed when people look up their own symptoms on trustworthy medical sites. He listens and has even taken notes. I've worked in the medical field with EMS and as a special-care aide for many years - I know that you have to be your own advocate, and be one also for anyone you care about who is hit with serious symptoms, especially older people.

[MountCleaners]

42. Internet saved my eye

I found out through the Internet that I had a retinal tear and that I had to get to an eye doctor immediately to prevent damage.

Otherwise I would have waited a few days.

Also when my dog had a hematoma, I learned that it would not go away on its own. I took him for immediate surgery.

Medical information has gotten a lot better since the early days of the web.