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.

Got something to add? Join the discussion and comment below.

You might disagree with half of it, but you’ll enjoy reading all of it. Try your first 10 weeks for just $10

Show comments
  • William Matthews

    Do you remember in the 1980’s when the phrase “I am not number” (from the 1960’s TV Show The Prisoner) became popular? It enjoyed a resurgence just as computers and computerisation started to infiltrate our lives more rapidly. Well, I am here to inform you; Yes, you are number.

    PS: You do have my sincerest sympathies over your loss. Becoming an orphan at any age is a dreadful experience.

  • Kennybhoy

    My sincerest condolences Mr Bhoyrul. You and your’s are in my prayers.

  • Kennybhoy

    Regarding the substance of your article I can only say that your experience mirrors my own and that of everyone I know who comes into contact with the NHS these days…

  • The NHS is not equipped to deal with death. It tries to keep you alive.

  • sfin

    I sympathise – both for your loss and with this article.

    I well remember discharging my father from the doss house of an NHS ward in the last two weeks of his terminal cancer, in 2007. I was determined to nurse him myself at his beautiful home and was constantly on the phone, trying to get the drugs needed to manage his death (the NHS washed its hands of him because I he had refused to die in the death factory that they were providing).

    Luckily my mother found a place in a local hospice – run on charitable donations and staffed by experts in palliative care. They used to bring the booze trolley round at about 11:00 and my father did enjoy his lunchtime Baileys.

    If you’re feeling charitable, ignore the job creation scheme that are the ‘established’ charities and give directly to the hospices. They are truly wonderful places.

  • Patrick Roy

    There is something wrong with the NHS and it’s getting worse and worse. The government should locate the best functioning health service in the world, and bring in someone from that organisation to turn it around. Jeremy Hunt is a joker. Also people need to start forking out for an NHS membership, for example. So many users of NHS services pay NOTHING in to the system. This whole concept of free may have worked after the war but it is really not sustainable. People need to put some skin in the game.

  • Cosette

    I am very sorry for your loss and the manner in which you suffered it. My gran died of a stroke in a uk hospital and my grandad died of a stroke in a french hospital. The contrast could not have been greater. The staff in france were always busy but always had time for us. They cried with us and cared for my grandad like he was one of their own. He died with dignity and respect. They continued to give him pain reflief even when they were no longer sure he could feel pain. In the UK the staff did not engage with us. Call button’s went unanswered, we were not kept informed and had little opportunity to speak to anyone. I work in the NHS in a non clinical role and there is much to be admired and some wonderful staff. End of life care is an area that needs a massive amount of work

  • davidshort10

    Not easy to comment when someone is writing about his mother’s death but also writing an article. about the NHS at the same time. Not the best thing to do. Let’s hope the fee goes to charity.

  • davidshort10

    I seem to remember this writer was involved in a financial scandal some long years ago.

  • Margot5000

    In an Exeter hospital a friend asked to sit with her very ill husband overnight. She tried to persuade them but was threatened with security if she didn’t leave. He was listening to this and crying as he wanted her to stay but told her it was better to leave to avoid a fuss. That is her last memory with him. She arrived home some 40 miles away when she was called to come back. He was unconscious when she got there and died soon after. Apparently ‘lessons have been learnt’…….. NHS hospitals are now garages for bodies.

  • davidshort10

    The only time I have been in hospital myself was after a motorbike crash. This was in the 1970s. I was interviewed by the police who decided I had suffered enough as a result of my stupidity. They did not therefore wish to prosecute. The nurses were lovely and laughed about the bed bath when it came to certain parts of my anatomy. The other patients were good humoured. I wonder if it is still like that today. They were very interested in whether I was going to marry the girl who came to visit me. I know that when my mother was ill and in hospital just before her death the nurses were a little bit insensitive in calling her and the other people by their first names but probably didn’t know any better. With the recent doctors’ strike I learned how very poorly paid doctors were so nurses must have it even harder.