Wednesday, 11 July 2012

The Very Scary Case of Kane Gorny

Before going into hospital last Tuesday, I stopped off at one of my favourite cafes for a hot chocolate, as a pre-hospital treat. I wasn't allowed caffeine in the three days before going in, so I had been suffering from a woeful lack of hot drinks. I got my hot chocolate (which was delicious) and sat down by the pile of daily papers they keep at the cafĂ©. Alas, all the more upmarket titles had been taken, so I had to settle for that peculiar bastion of journalistic achievement: the Daily Mail.

You can imagine my feeling of ill-omen when, immediately before going into hospital overnight for further investigations into my pituitary tumour, I saw that the Mail's headline story was about Kane Gorny, a 22-year-old with a pituitary tumour who died of dehydration in hospital after nurses denied him his medication.

You can read the Mail's story online here. According to the Mail, it seems that after his entirely routine hip replacement surgery, nurses did not give Mr Gorny medication necessary for fluid retention; he became so agitated from dehydration that he called 999 in an attempt to get some water, but was sedated and left unattended overnight, despite his mother raising concerns. Even after his death, the attitude of some members of the nursing staff appears to have been appalling.

I thought I would tackle a couple of questions raised by the reporting on this terrible story, before moving on to look at it as a whole:

What was wrong with him?

 Kane Gorny suffered from a pituitary tumour; that much is certain. The exact details of Mr Gorny's condition are still somewhat sketchy and vary depending on which paper you read, but I'm going to guess that he possibly had acromegaly or Cushing's Disease, from the statement of his endocrinologist that he had a "rare tumour", and the fact that he had joint problems.

Most papers have reported that he had a "malignant" brain tumour or "brain cancer". The tumour may well have been cancerous, but it should perhaps be noted that this extremely rare for pituitary tumours; they are sometimes misreported as malignant due to journalists misunderstanding the condition and the fact that a tumour labelled "benign" may still be very harmful. In any case, I'll be looking at the definition of malignancy/cancer with regard to pituitary tumours in a future post, hopefully within the next couple of weeks, because it's an interesting question.

Why did he need a hip replacement aged just 22?

After pituitary surgery, sometimes the healthy pituitary gland is damaged, leaving it unable to produce certain hormones, including ACTH (adrenocorticotrophic hormone), which stimulates the adrenal glands to produce the steroid hormone cortisol. Without cortisol in the body, you can die quite quickly - consequently, it is standard to give patients steroid pills after surgery until doctors are certain their pituitary gland is able to produce ACTH. If the pituitary gland has been damaged, patients will need to take these pills for life.

Most reports have stated that Mr Gorny's steroid treatment left him requiring a hip replacement; high levels of steroids in the body can lead to avascular necrosis (although not in "a couple of weeks" as one paper initially reported). Additionally, if he did indeed have Cushing's or acromegaly, both of these conditions can adversely affect joints.

How did he die of dehydration so quickly?

A healthy human can live for a couple of days without water, depending on exertion and environmental conditions. Kane Gorny could not. After his pituitary surgery, Mr Gorny was left with diabetes insipidus. This is a very different condition from what we refer to as "diabetes" (diabetes mellitus) and is caused by a deficiency in anti-diuretic hormone (ADH, or vasopressin). Anti-diuretic hormone is secreted by the pituitary gland and helps to control the body's fluid balance. In diabetes insipidus, the lack of this hormone means that the body cannot conserve much of the water which it takes in, and consequently the sufferer becomes extremely thirsty and needs to urinate frequently. Unfortunately, developing this condition is a fairly common side-effect of pituitary surgery and pituitary radiotherapy.

In order to treat his diabetes insipidus, Kane Gorny would have needed to take a drug called Desmopressin (DDAVP), which is a synthetic substitute for vasopressin. As long as he was taking this drug, his body would be able to retain a normal amount of the water he drank, and he would not become dehydrated. When the drug was witheld, his body could not remain hydrated, and he died.

How could the hospital get this so wrong?

Unfortunately this is the question that can't be answered. Kane Gorny's death appears to have been preceeded by a number of absolutely catastrophic blunders at the hospital. His endocrinologists were not informed that he was in the hospital for surgery; his surgeon was entirely unaware of his condition; nurses did not read his notes; no-one listened to his mother's concerns; the list goes on.

Diabetes insipidus is a common problem among pituitary patients, but far more rare in the general population. Endocrine and neurosurgery nurses would likely be familiar with the condition, the importance of the medication Mr Gorny was taking, and the crucial need to monitor his fluid balance. The nurses actually looking after him knew almost nothing about it.

It's a sad fact that there are a hell of a lot of medical conditions in the world. Patients with diabetes insipidus or the inability to produce steroid hormones are encouraged to wear MedicAlert jewellery to alert paramedics and medical staff to their conditions in case of emergency, yet it seems even when medical staff have access to full notes on a patient they can go unheeded. 

Sometimes it gets frustrating when you're in hospital or go to the doctors and are asked for the thousandth time to explain what's wrong with you. In the future I'll try to be more grateful that someone is checking...

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Kane Gorny's brother is fundraising for CLIC Sargent. You can donate here.


8 comments:

  1. This one struck a chord with me ! After my (benign) pituitary tumour removal, I was back in hospital with brain infections for many weeks. As well as the infection I was being treated for a number of pituitary issues which had emerged including ACTH and AHD (with me for life now).
    The doctors were still tryng to work out levels and times for pills but the rule all the time was DRINK TO THIRST. And I did - litres of water.
    Then one evening a nurse told me I was only to drink 600ml in the entire night. (I would usually drink this every half to one hour) . This was the worst night. I was only allowed to suck on ice.(did a lot of that).
    The next morning my endocrinologist hit the roof-as this almost killed me. The nurse had misinterpreted an acronmyn or reading , thinking I had another medical issue.

    So yes, I can see how this could happen.

    You are being quite an expert on all areas of pituitary aren't you ! I have been entertained and amazed by your hospital reportage. I loved the weirdness rating. Great concept and so much fun to read.

    Your blog is fantastic and I hope there are more people out there that appreciate it. Thanks for sharing

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    1. Wow, that is really scary. It just seems crazy that hospital is the one place where people who need regular medication to keep functioning can't be certain of being able to take it. DI is so treatable that it's just terrible that this can be allowed to happen.

      Thanks so much for all your kind words :) It's really nice to know that people enjoy what I've been writing.

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  2. What an excellent piece. If you are not medically qualified yourself, you seem to be what is known as an expert patient. You have set out medical facts very clearly and far better than any of the media reports accessible online.
    Clearly there have been many failures of procedure and of communication in this tragedy. But the worst of it is the arrogant refusal of the nurses and doctors to do two things: (1) give Kane Gorny the water he was asking for and (2) take notice of the desperate attempts made by him and his mother to be taken seriously.
    They refused the basic physical necessity of life (water) and they refused a basic social necessity of life (listening to the other person).
    So much power in the hands of so much ignorance.
    Well done you and best wishes.

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  3. Emer - please come and join us on the Medical Journalists Association group page on Facebook. The points you raise are very important, and you write lucidly and with great knowledge.

    https://www.facebook.com/home.php#!/groups/2315321032/

    I am also a medical journalist with a pituitary condition, and concerned about the way pituitary conditions are (mis)reported by the media.

    Please also feel free to write to me directly so we can engage in a dialogue about this issue. Regards, Jon

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    1. Hi Jon! Thanks so much for the invitation, I will have to check the group out; and thanks for the praise as well, I'm delighted that people have found it to be an interesting post. The level of confusion in the reporting of the case really has surprised me - given that I would have thought that half an hour on Wikipedia could clarify anything that journalists didn't understand, it seems very sad to me that so many haven't even taken that time to make sure they're not misinforming the public.

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  4. This is an excellent piece about a scandalous failure of care. As an endocrinologist, I know how easily this can happen! Usually in an alert and conscious person with free access to water, accidental omission of desmopressin is not fatal - if this can happen to such a person in a large London teaching hospital, imagine the risk to those without intact thirst! Having looked after these patients, written all over their notes to contact endocrinology immediately they are admitted, and primed their families to ask for this too, I'm sorry to say that they were frequently still admitted under non-specialist teams without our knowledge. My advice to all pituitary patients would be to get your endocrinologist's direct hospital contact details, and carry them on you so you can call them, or paramedics/A&E staff can if you are admitted unexpectedly.

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    1. Since Atkinson morleys hosp closed, there has been neurosurgical expertise on site at st. George's which makes this case all the more incomprehensible. The only thing I can think is that this patient fell between the 2 areas of expertise with both assuming the other knew more than was actually the case. Also really important info is often written on the front of the notes in large print eg allergies etc so everyone doesn't need to trawl through acres of notes to get to fine detail. It sounds like communicationbetween staff and family had broken down irretrievably even before the ultimate tragic end. I think that this patient may have had a phaeochromocytoma.

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    2. It really does highlight just how pushy you need to be, both as a patient and as a relative or friend of a patient. I think part of the problem is simply not knowing where you should go; having the phone number of an endocrinologist or endocrine specialist nurses is a real comfort.

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