Agony of watching my dying mother stripped of dignity

An abbreviated version of this article was published in the Sunday Express, 8 May 2016

Regular readers may have noticed my absence from the critics’ pages today.  This is because I spent most of last week with my sister and her husband at my mother’s deathbed in Watford General Hospital.   The care she received and conditions under which it was given struck me as totally inadequate.  As well as causing grief to her family, they raise questions about the nature of our health provision and the treatment of the elderly and dying that are of concern to us all.

My mother led a full life into her mid-eighties.  After a career as a university lecturer and academic administrator, she was active in retirement as a volunteer for the Citizens Advice Bureau, on the committees of various local and national organisations, and as a global traveller.  Eighteen months ago, she started to show signs of mild confusion but, with the assistance of a part-time carer, she remained able to live alone.

Two weeks before Christmas last year, she tripped over her dog, breaking her arm and fracturing her hip.  She was taken to Luton and Dunstable hospital, which, after the closure of St Albans hospital, is the closest to the Hertfordshire village in which she lived.  She was put on a surgical ward where she remained for the best part of three months.

Her condition worsened in ways that were never wholly explicable or explained to me.  She developed delirium, becoming alternately aggressive and terrified.  Meanwhile, her body started to atrophy.  With the hospital doing little more than keeping her safe, my sister and I employed the carer to sit with her, feed her and reassure her:  a recourse, which I’m well aware, is not available to everyone, but I dread to think how she would have fared without it.

I am the first to acknowledge that my mother was a difficult patient, nevertheless she was not afforded the care and attention that she deserved.  Some of the younger staff treated her sharply.  One of my most painful memories is of arriving in the ward to hear my frightened mother, unable even to move her hands, resorting to the only means available to her.  ‘If you do that again,’ she cried to the nurse who was manhandling her, ‘I’ll bite you.’

Equally distressing was her response to my offer to call a nurse when she needed the lavatory.  ‘They want me to go in the bed,’ she said.  When the staff firmly denied this, I put it down to my mother’s confusion, until a friend, whose ex-husband had had a stroke, reported that he was told the very same thing.  After all, it took around twenty minutes for two nurses to put my mother on the commode and a mere five for them to change her sheets.

Lest it be thought that the NHS alone was at fault, the private sector also proved to be culpable.  After three months in hospital, my mother was transferred to a nursing home in Harpenden.  The following day the home sent her back, claiming that they were unable to meet her needs.  The experience was disruptive for my mother, distressing for her family and placed further strain on the hospital.  What is most galling is that staff from the home had carried out a thorough assessment of her only two days before.  To add insult to injury, the manager subsequently rang me to request payment for sundry expenses incurred during her stay.

After a further spell in hospital, my mother was moved to a home for psychiatric geriatric patients in Rickmansworth.  By its very nature, the establishment was grim, but I was most impressed by the dedication of the staff.  To give one example, when I explained that I wanted my mother, who was now totally blind, to listen to the radio, the immediate response was ‘What stations does she prefer?’.

My mother’s condition rapidly worsened and, on my final two visits to the home, I found her lying impassive and immobile in bed as if already laid out in a coffin.  My sister and I took the painful decision that, in the event of any further deterioration, she should not be resuscitated.  I received confirmation from the home manager that, instead, she would be put on ‘end-of-life pain relief.’

Last Monday night I received a message to go straight to Watford General Hospital where my mother had been admitted.  Earlier that evening her lungs had filled with fluid and a nurse from the home had rung my sister to check that we did not want any further medical intervention.  My sister confirmed this, with the proviso that she be given the necessary morphine.  On being told that they had none, my sister immediately asked the nurse to call an ambulance.  I am left to wonder what ‘end-of-life pain relief’ entails if not morphine and how a nursing home for the frail and vulnerable can fail to keep an emergency supply.

The last four days at Watford were the most painful of the entire period, and not simply for the obvious reason of my mother’s imminent death.  Ignoring our ‘no resuscitation’ decision, the hospital gave her two nebulisers of antibiotics, which had no effect other than to prolong her anguish.  Over the next thirty-six hours, she was shunted between five bays and cubicles in the Accident and Emergency department, since there was nowhere suitable to place her.

She was eventually moved to a side room in a temporary ward, which was little improvement since, for the first day and night, we were treated to a demented old lady shrieking obscenities.  The room was too cramped and airless to allow us to shut the door.  We were given a fan, but the only available plug meant that it would have blown directly on to my mother.  We asked for an extension lead but were told that it would be contrary to Health and Safety regulations.

The palliative team, whose kindness was tempered by platitudes, told us that end-of- life care was as much about the family as the patient.  If so, it failed dismally in our case, since the acute discomfort (I have a spinal injury and for the thirty-six hours in A&E was forced to sit on a moulded plastic chair) and concern about practicalities prevented our engaging with the deeper reality of our mother’s death.

Far more serious was the fact that, to my mind, she was given insufficient morphine.  The staff insisted that they were only permitted to prescribe enough to alleviate suffering.  Whatever the difficulty of gauging the needs of somebody who has lost consciousness, I should have thought that rasping and gasping for breath must be some indication.  I was told, however, that this was a normal pattern for a person approaching death.

On investigation, I have found that there is a very different protocol for people dying at home or in a hospice, who are given as much morphine as they need, from that for people dying in a hospital, where access is cruelly restricted.  I am told that this is to forestall any charge of euthanasia, a concern that is absurd in a case such as my mother’s.  ‘You’re not shortening a life, you’re shortening a death,’ I struggled to explain to one doctor.

The horror of the experience has raised many questions for me.  With the decline of organised religion, the NHS is the one institution in this country to command universal respect, but it has reached if not, passed breaking point.  It took well over an hour for a doctor to come to certify my mother’s death.  Apologising, he explained that, between 5 at night and 9 in the morning, there were only two doctors on call for the entire hospital.  Earlier, I had heard a staff nurse complaining to her manager that serving breakfasts while a confused old lady wandered around the ward was ‘unsafe practice’.  Each night the corridors of the A&E department were filled with patients on trolleys.  A nurse told me that ever since the closure of other hospitals in the area, the corridors had doubled as wards.

The principle of universal healthcare is a vital one, but the quality of that care is of equal importance.  In my mother’s case, this proved to be woefully lacking.  Surely the time has come for a radical review of the system?  Whenever anyone suggests moving to an insurance-based scheme, the spectre of American healthcare is raised.  But there are far more effective and equable schemes in France and Germany, where provision is made for those unable to pay.

The practical difficulties and medical intransigence that we faced at every turn transformed a process that should have been profound and dignified into something quite the opposite.  The refusal to give my mother sufficient pain relief extended both her agony and ours.  As one nurse, visibly distressed by her condition, remarked: ‘We wouldn’t let a dog suffer like this.’