Student BMJ November 1997: Personal view
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Michael J Chamberlain, Head of division of nuclear medicine, Ottawa Civic Hospital |
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Please don't make a fuss, dear My mother reached 86 with her hearing, vision, and all her wits intact, living alone, and enjoying life. Then a neighbour found her semiconscious, bleeding from a head wound. She had struck her head on the sideboard and crawled to the telephone. The left hemiparesis was quickly evident and became dense. She was admitted to the local general hospital where she had previously had a cardiac pacemaker inserted and been treated for mild hypertension and presumed angina. Unfortunately, no trace of the previous hospital records could be found. The paralysed limbs became oedematous, deep vein thrombosis was considered and rejected, a diuretic was prescribed. Mother complained of dry mouth and urinary urgency. An antimicrobial was prescribed, although examination of the mouth did not reveal any thrush. Three weeks after admission my sister asked the consultant physician whether subdural haematoma had been considered. She was told that it had and had been excluded by computed tomography, but no scan had been performed. By now Mother was being nursed in a stroke rehabilitation unit where the television was on at full volume distracting patients and visitors alike. It was kind of an aid to bring a cup of tea but not to leave it on a table on her left side to which she showed the anticipated inattention complete with the spilt food down her left side. The inattention to the left side led to a recurrent problem with her glasses, which would fall off and get lost in the bed clothes. Once we recognised the problem it was a simple matter to purchase the strings which, unlike Mother, many of us have adopted without shame. We were invited to attend a case conference where we learnt that "Mollie is being a little bit naughty" in asking to go to the toilet too frequently. Staff were annoyed that she would not wait until the prescribed hour. We were told that Mollie was unable to sleep and lay awake muttering. We asked if she was incontinent. The nursing staff said "No." (Subsequent examination of the bedside chart showed that urinary incontinence had been recorded once or twice each night.) We tried to explain that here was a respectable elderly woman for whom incontinence was a matter of great shame. She feared that she would fall asleep and wet the bed. So she lay in bed recalling reams of poetry learnt in her youth. Muttering indeed. Three months after admission the secret to a good night's sleep was discovered when an incontinence pad was provided. We wanted Mother to come home for Sunday lunch. The staff told us that we would have to book a specially equipped taxi. We booked the required vehicle and were surprised when the wheelchair was placed crosswise in the back with no means of securing it. With the motion and the inability to see out of the window the inevitable happened and she vomited. More shame. We took her back to the hospital in the family car. By then she had had a good lunch and enjoyed exerting her usual dominance in completing the general knowledge quiz in the Sunday newspaper. Urgency continued to be a problem. The bladder was examined by ultrasound and residual urine was measured by catheterisation. Mother was told that she would have a diagnostic cystoscopy under local anaesthetic. She gave her written consent, so she was surprised to receive a systemic anaesthetic and to wake up to find that a suprapubic cystotomy had been performed. Her heartfelt cry was "I wasn't prepared for this." What travesty of informed consent was this? There was no discussion of the proposed procedure with Mollie or her relatives, who were visiting twice daily. When we eventually met the consultant urologist he declared, with no apparent embarrassment, that it was not his normal practice to obtain written consent for a suprapubic cystotomy nor to discuss its management with patient or relatives preoperatively. In any case he said that the operation was for the nurses' convenience. Within a few days the suprapubic cystotomy was infected and bladder spasms were causing distress. We were surprised to observe the wound being dressed without gloves or other cross infection precautions. I wrote to the consultant in charge of Mother's care politely asking for an explanation and for a plan for further management. I never received a reply. Almost every suggestion for modification or treatment had to come from the family. We were pleased to provide a footstool to elevate an oedematous foot, but hesitated to make the suggestion until it was clear that it would not be provided otherwise. We wondered if the back support of the wheelchair had to be so low, giving no support to the shoulders, head, and neck. Inevitably, this meant that Mollie naughtily slumped forward and to the left shortly after someone had put her straight. Concern for the mind seemed to play little part in rehabilitation. Someone who has been used to a mixed diet of novels, biography, current affairs, poetry, and gossip requires more than lowest common denominator television. Physical recovery is often assisted by motivation and mental wellbeing. Mother never had an effervescent manner, but in the weeks after the stroke she was often emotionally flat. We wondered if she was pathologically depressed. We talked this over repeatedly and then raised the issue with the consultant. Depression was not thought to be a serious consideration and a psychiatric consultation not necessary. An antidepressant was reluctantly agreed to, but the drug was discontinued after two days because of drowsiness and dry mouth. One of the things that sustained Mollie was our promise that she would come home for Christmas, and we just made it against the advice of the hospital staff. With the help of resident care givers, district nurses, and an understanding family doctor, who visited regularly, we managed. Mollie was pleased. After three months she had another stroke and died. At her funeral we read out those favourite poems which she had mumbled. It was a splendid affair. What is the purpose of writing this sad story? "Please don't make a fuss, dear," she would have said. I am not motivated by bitterness. Events of the past few months will form a very small scar in the memory of a long and fulfilling life. The people looking after my mother were not basically unkind, and I do not have any paranoid thoughts that my mother was treated differently from other patients. That is the point. It happens all the time. We have slipped from standards of compassion and professionalism that we once espoused. It has something to do with lack of resources, but I suspect more to do with lack of professional self worth and care by isolated individuals rather than a coherent team. Most of the things that made Mother's last few months sad, uncomfortable, and undignified cannot be blamed on lack of resources. And they happened despite the fact that she remained articulate, that she had a medically informed family who could visit daily, and that physical and financial resources were available to allow her to be cared for in her own home. {au}
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As a source for future medical historians, this book will be invaluable, but its readership ought to be far wider than that. With the future of the NHS still hanging in the balance, this book should be essential reading for all who are currently working or planning to work for the NHS, from medical students and nurses to consultants and managers. It provides a useful basis for understanding the current situation and mood in the NHS |