Life is for living

I am impressed that the author and the BMJ have provided this follow-
up. Clearly there were some issues around the insertion of the PEG here
but the decision is often far from straightforward. As a
gastroenterologist (retired 2007) I know the pressures can vary from
clear clinical need to being just a step to make nursing care easier and
facilitate discharge. Inappropriate pressure to insert can come from
family or from carers with unrealistic expectations. Both groups often
ignore the level of risk and distress of PEG insertion for some patients.

In the absence of any good evidence whether the patient would want to be
fed in this way if other methods fail , the “right”decision may be
retrospective. An advance decision (living will) might have been very
helpful here . There are drawbacks , but the best of these allow for
disease specific comment and to give carers at least an idea about what
percentage chances of recovery would justify aggressive types of treatment
– and what is meant by “recovery”, which should be seen as more than just
survival. That produced by Dignity in Dying is seen as one of the best (
I have just re-done mine). Nearly 40 years ago as a junior doctor I
remember having a detailed night time discussion with a patient , together
with her husband . She had very severe and deteriorating MS . We agreed to
treat her severe pyrexial illness with antibiotics. She accepted the
treatment on the grounds that is was probably urinary in origin and would
add to her suffering rather than kill her – but if a life threatening
pneumonia occurred we would not treat. Since then I have had to have many
similar discussions. What has changed is that both patients and families
are far less likely now to have thought about these issues beforehand.

Perhaps it is this just as much as the loss of continuity of care which
accounts for so many of the poor decisions at the end of life? Perhaps too
we have allowed the cancer model to overshadow those illnesses from which
most of us will die.

Competing interests:
Member of Dignity in Dying

Mum suffered a severe stroke in February 2007 which resulted in her
hospitalisation. After 6 weeks she had recovered sufficiently to be
discharged home and was able to join the family on holiday, initially in
the Lake District and two months later in Corsica. Apart from a continuing
problem with generalised haemorrhagic blisters and bruising, we thought
she was on track for a good recovery.

At the first out-patient appointment in August we discovered that
steroids which had been prescribed during her admission and which she was
still taking, should have been discontinued on her discharge from the
hospital in April. This was put down to a miscommunication between the
hospital and the GP and the steroids were stopped. A week later Mum became
increasingly confused and disorientated. She was seen by several GPs, but
it was a Psychiatrist who eventually diagnosed a possible urinary tract
infection with associated delirium. Antibiotics were started but two days
later Mum fell and was taken to A&E.

So began a six month hospital stay on a general medical ward and an
inexorable deterioration in her general condition. She lost the ability
to speak intelligible words, rarely got out of bed and was sometimes quite
hostile. She soon stopped eating or drinking and a PEG was inserted for
gastric feeding. She inevitably contracted first MRSA and then C.difficile
and eventually, in mid-October, we were told she would probably die within
days.

Miraculously, however, she survived and continued to exist in a semi-
vegetative state on the ward. Totally bed-bound, the only rehabilitative
physiotherapy that Mum received seemed to consist of her being hoisted
from the bed into a chair and then being left alone. Despite constant
pleas for more physiotherapy sessions, these occurred at best twice a week
or not at all. We tried encouraging fluid and pureed food orally with
minimal success. Speech and meaningful interaction were virtually non-
existent in spite of the constant efforts of Dad, my brother and myself.

At a case conference in early January, the physiotherapists said they
could not offer any more sessions than they were giving, the speech &
language therapist pronounced that oral intake of fluids should no longer
be attempted and the Consultant advised us that there was little hope of
any improvement. The hospital staff had clearly written Mum off as a lost
cause. The sense of futility and despair was palpable. It was then that
Dad who, day in and day out, had watched helplessly as Mum had
deteriorated agonisingly into her vegetative state, decided that we should
take her home. As there was nothing more to be gained from continued
hospitalisation, the family would ensure that, at the very least, Mum
could spend the rest of her life in the dignity of her own home. The
Consultant wished us well. A care package was organised and finally, in
March, Mum went home.

The first few weeks were extremely difficult but before long, Mum had
graduated from small spoonfuls of pureed food to soft solids. Her speech
began to improve dramatically, along with her comprehension and awareness.
We employed a private physiotherapist to help with mobilisation. At her
first visit Mum, who had been bed/chair-bound for nearly six months, was
able to take several very wobbly steps with assistance. At the second
visit Mum, again with assistance, was pushing a Zimmer frame down the
hallway. By July she was walking unaided. The hospital had made no
referral to the community physiotherapists so we contacted them ourselves
and they come to the house 2-3 times a week. Mum is now bright and
bubbly, eats and drinks well and communicates effectively. Everyone is
thrilled with her progress; none more so than herself.

So what brought about the complete transformation which started
almost immediately Mum arrived home? Do patients get completely
institutionalised with a long hospital stay? Is being in their own home
really the trigger they need for improvement? Is admitting a stroke
patient to a general medical ward in the patient’s best interests? How
much did the mismanagement of her steroid therapy contribute to Mum’s
downfall? Does constant and concentrated physiotherapy make a difference
to a patient who should be capable of mobilisation? Is it paramount to
have the love of dedicated family members to rebuild the patient’s life?
Or is it just good fortune that some patients actually do make a
miraculous recovery?

Whatever the reason, we were right not to give up.

Perhaps Mum’s success story will help other families in despair and
let them know that sometimes the medical profession do get it wrong.

Competing interests:
None declared