Re: Published!

On Mon, 5 Dec 2005 11:58:46 +0000 (UTC), "Pat Gardiner"
<patgardiner@xxxxxxxxxxxxxx> wrote:

>As we all know, especially those that run websites, it is not how many
>people read, but who and why.
>
>I was "published" last week, quite a lot of people read it; two that really
>mattered.
>
>It happened like this:
>
>Six months ago, when at a routine hospital check, I was waylaid and asked to
>complete a questionnaire and answer some questions. The theme was obvious,
>the questioner was worried.
>
>They were very anxious that in these days of informed consent that I had
>been given adequate information before agreeing to a Whipple operation.
>
>I don't think my answers were very reassuring. It was not that they had not
>supplied the information, but my ability to understand it and make a
>rational decision.
>
>Shocked, worried, a little ill and in an unfamiliar situation, my consent
>owed more to instinct than reason. There was no time to dither either.
>
>I'm from a generation that trusted the surgeon, sometimes unwisely, and
>usually went along with what they said. When there was no clear confident
>advice, it seems confusing.
>
>It soon became clear what the questioning was all about. There was an air of
>gloom about the place. I quickly found out that they had a patient that had
>refused the operation and was being nursed to his death. It was obviously on
>everyone's mind. The surgeon's team told me about it and the ward too.
>
>Naively, I commented that I was surprised that anyone should refuse a chance
>of an extension to life.
>
>"Not so! I was told.
>
>Patients were exercising their right to refuse this rather unpleasant
>procedure. The medicos were becoming worried and were wondering how to
>handle the situation, if indeed they should handle it at all.
>
>Things are made worse by the influence of league tables. This is an
>operation where the skill and experience of the surgeon and team really
>matters. The more they do, the better they get. Nobody wants to be thought
>to be influencing a patient for the wrong reasons.
>
>The more experienced the surgeon, the better the results, not that anyone in
>real life has the time or opportunity to check. As it turned out I had
>struck lucky with a top surgeon at a teaching hospital, but there is a drive
>to restrict the procedure to the very best at a very few centres of
>excellence. There is a downside to such a move.
>
>I left the hospital feeling sorry for the medical staff. It seemed a catch
>22.
>
>Six months later, feeling pretty chirpy, it was I felt time to thank the
>hospital and the local surgery for their efforts on my behalf. Many had gone
>the extra mile to talk to me; some showing more of themselves than you might
>have expected.
>
>Typically, they got a story, a true story, with their legs pulled a little
>and not a lot of respect for the medical profession shown.
>
>It was a love story set against a background of medical ***-ups, half
>forgotten cover-ups and kindness. It was also the story of how I had used
>the extra time, the six months feeling well when I should have been pushing
>up the daisies.
>
>I knew it was a tear-jerker of course, and that the female readers would
>love it and the men pretend to ignore it. It was just simple plain English,
>no great use of language and nothing clever; just something to read on night
>duty.
>
>I sought to reassure them that it was all worthwhile, perhaps even to
>reassure myself a little too.
>
>The story had the expected effect. I was thoroughly grinned at and peeped at
>around doors. It was being copied and circulated through the staff.
>
>It was the reaction of my questioner of six months previously that was
>unexpected. It caught me by surprise. She had previously asked me if I could
>spare some time helping improve patient information and perhaps talk to one
>or two patients.
>
>"Loved the story," she said. "We have two patients currently trying to
>decide whether to have a Whipple. I've given them copies. I think it will
>help."
>
>It didn't sink in, until I reached the car, perhaps because I had been given
>good news myself.
>
>I'd got two readers to whom that story really mattered. It might only be
>two, but my words would influence their terrible life or death decision
>probably more than all the technical and medical explanations.
>
>That is an awesome responsibility. We can never be sure of the unexpected
>consequences when we put pen to paper.
>
>Not all writing, even bad writing, is a tabloid headline becoming tomorrow's
>fish and chip wrapping or a throw away remark on a newsgroup.
>
Well done Pat.

About your statement "Naively, I commented that I was surprised that
anyone should refuse a chance of an extension to life", things can work
both ways.

Sometimes with a terminal condition the quality-of-life of an extension
might not be worth having. Someone I used to know told me about a man
who was in hospital with cancer and had only a few weeks to live. The
consultant explained that aggressive treatment was available that might
extend his life by some months. The down side was that the treatment
would make the man feel really ill. He would also have spent hours each
day being wheeled around the hospital, waiting in corridors, etc. It
would be a really gruelling experience. The alternative was to be made
comfortable leaving him able to have family and friends with him
whenever he wanted during his last days.

The man told the consultant that he would forgo the treatment. The
consultant reportedly looked very relieved - he had presumably observed
the suffering of others in a similar position who had chosen the
treatment.

--
Peter Duncanson
UK (posting from ukba)
.