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The NHS has forgotten the art of a dignified death

Ten years ago the National Health Service eased my father’s last days. My mother, this year, was not nearly so lucky

6 February 2016

9:00 AM

6 February 2016

9:00 AM

I’ve never understood the phrase ‘died peacefully’. Two weeks ago I watched my mother die, in the very same NHS hospital where I watched my father die almost ten years earlier.

There was nothing peaceful about it, at least from my unwanted ringside seat. The end — acute pneumonia providing the final nail in a soon-to-be purchased coffin — was painfully slow. It dragged on and on and on. She struggled for her last breaths and appeared distressed, confused and frightened to the end.

The last time I had been to St Helier hospital in south London was September 2005, as my father slowly slipped away. Naturally the memories came flooding back. And so did confusion. Ten years is a long time, especially in the NHS. A lot has changed, and none of it, from what I saw, has been for the better.

Medically, their endings were similar. Both in their early eighties, both with a history of cardiac problems and gradually weakening bodies that could no longer stomach (literally) or respond to more medication. But, bizarrely, I have uplifting memories of 2005. A consultant calling me aside, explaining why there would only be one outcome. He told me to prepare mentally for the imminent death, described in detail what to expect in the coming days, and pointed me to support services. My father was both comforted and made comfortable to the end. An hour after he died, I remember the nursing staff queuing up to offer their condolences. I had no doubt they really meant it. It was both sad and beautiful. And it was definitely dignified.

In 2016 it was different, especially for someone like me who doesn’t live in the UK and has not used any NHS services for ten years. During the four days I spent at my mother’s bedside, not one consultant approached or contacted me or any other family member. They told us nothing. Mrs Bhoyrul — or ‘Bed 13’, as she was known — was just another elderly woman waiting to die.

On day three, a nurse told me that the doctor had been and gone when I was in the canteen, so didn’t get a chance to speak to me. But he did leave a message — in the form of a crumpled leaflet that read ‘Understanding what happens when someone is dying’. The leaflet gives useful tips on changes you may notice in a dying person, including ‘difficulty swallowing’, ‘changes in breathing’ and ‘changes in how the person looks’. One section is absurdly called ‘changes in nursing and medical care’.

Later that day I approached a junior doctor for an update. She told me things were not looking good. ‘Is your mother religious?’ she asked. ‘Yes,’ I replied. She said she would arrange for a priest to visit her. A few hours later, she explained the priest was busy but would definitely ‘say a prayer’ for her.

I never saw the doctor again. But I did see plenty of nurses. Having read the leaflet explaining why a woman in a near-coma would have no appetite, I couldn’t work out why they came by at breakfast, lunch and dinner to inquire if she wanted a non–vegetarian or vegetarian meal.

The last conversation I had with my mother was on the afternoon of 11 January. ‘Are you in pain?’ I asked.

‘I am,’ she stammered back.

Shortly after 9 a.m. on 12 January, I noticed she had stopped breathing. I called a nurse, who confirmed that she had gone. I asked whether I could be alone with her for five minutes, and she agreed. A minute later, another nurse appeared, asking whether she wanted a vegetarian or non-vegetarian meal. I explained that she was dead. Moments later, one of the cleaning staff appeared. It was the last time I saw my mother’s face.

Soon after, I went to the hospital’s bereavement office, clutching a small bag containing my mother’s shoes, reading glasses and some clothes, to arrange the necessary paperwork.

‘She’s a Hindu, so we would need to do the funeral as soon as possible,’ I told them.

‘Sorry sir, no chance of a death certificate today. There’s a doctors’ strike.’

The only positive I can take from all of this is that at least I have no more parents left to die in the NHS. The strange thing is, the NHS is not exactly short of cash. According to the NHS Confederation, net expenditure went up from £64 billion in 2003/04 to £113 billion in the last financial year. The planned expenditure for this financial year is £117 billion. Nearly 33,000 more doctors and 18,500 nurses were hired between 2004 and 2014.

So why aren’t things better? Significantly, nearly one in four of the 1.4 million NHS staff are non-medical. Or rather, bureaucrats. Last year, the former M&S boss Lord Rose said in his report into NHS leadership that there was a ‘chronic shortage of good leaders’, and that the ‘administrative, bureaucratic and regulatory burden is fast becoming insupportable’.

I couldn’t agree more. From everything I saw, bureaucracy has got the better of humanity. I wouldn’t say that doctors and nurses no longer care for their chosen profession, but the system is certainly making it harder for them to do so. They appear overworked, burnt out and completely lacking senior support. In the US, many consultants will visit their patients at least twice a day. They do this largely for legal reasons, to avoid litigation if a patient dies. Getting a visit from a consultant in the NHS just once is pure luck.

MPs need to distinguish between protecting the NHS and protecting the NHS budget.

I know that there is nothing medically that could have been done to change the outcome. My mother was dying, pure and simple. Nothing and nobody could have saved her. Whether initially admitting an 81-year-old woman with acute pneumonia to a room with three other patients was the soundest move medically (more for the other three patients), I am not in a position to say. Whether it was right to send her home with oral antibiotics after her first visit to the emergency room, a week before she was admitted, I’ll never know.

But I also know that after my father died, my mother and I both marvelled at the wonders of the NHS. I would bore her with stories about who Aneurin Bevan was. We agreed that this was an organisation to be championed and praised for its quality of care and quality of staff. Regardless of age, background or condition, the one thing the NHS never did was stop caring.

Wherever she is now, I doubt she still feels that way.

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