Features

A brother’s suffering

It is so wrong that the law against assisted suicide means that dying patients are often left without adequate pain relief

27 October 2012

9:00 AM

27 October 2012

9:00 AM

My brother David died recently in the care of the NHS. His death was not their fault: no one can do anything about bone cancer except alleviate the pain. Which is what they spectacularly failed to do.

Bone cancer does not kill you. It just hurts like hell and your bones become so fragile that coughing breaks ribs. You have to wait for the disease to spread to an organ, the failing of which will kill you. Or you can hope for pneumonia, ‘the old man’s friend’, to finish you off.

Either way, you should not have to endure months of pain and die in agony. Pain relief is possible, and many hospices and a few hospitals (notably the Royal Marsden) manage a patient’s dying days with compassion and palliative drugs (notably morphine) tailored to the patient’s pain. But most do not.

Hospices have a better reputation. Their aim is to aid a peaceful death. Hospitals, on the other hand, are tasked with keeping the patient alive, however much he suffers.

David was eventually given morphine. The blessed relief would last three hours, but the nurses would be unable to give him his next dose for another hour. So out of every four hours, one would be spent in groaning, crying, sometimes begging, agony. Consultants see their patients rarely and briefly. If they saw them in extremis, pity might move them to increase the dose — something the ward staff, who must deal with the pleading and crying, cannot do. It must be hell for the nurses; hell also for the other patients in the ward; distressing beyond measure for the family. And torture for the patient.

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You would not treat a dog like that. And if you did, the RSPCA would rightly prosecute you for willful cruelty and neglect.

The truth is, I suspect, that doctors fear being accused of murder, or mercy killing. They dare not prescribe enough morphine to make the patient comfortable. In our parents’ day, doctors would give their dying patients enough drugs to relieve the pain. Of course this also made them drowsy and they slept a lot. And if it helped them on their way, no one thought it wrong.

In the last six weeks a pattern developed. David would get pneumonia, be admitted to the hospital, they would give him antibiotics, he would recover, be sent home. And a week or two later, be admitted again.

With only a fortnight or so to go, David’s wife discharged him, thinking it would be easier at home. They lived in a two-bedroom house and their four children came to spend their father’s last days with him. There were some good times. When the morphine was doing its job, David would be pain-free, surrounded by his family, joking, or (unusual for him) telling them just how they had enriched his life and how much he loved them. That is how dying should be. And proper palliative care allows that — the space and time for the dying and the grieving to say those things they need to say, to give each other reassurance, comfort and love.

But mostly it was not like that. The four children and beloved wife’s memories should be of those good times. But for David’s family, I fear they are overlaid by the memories of the one hour in four of agony for David, and anguish and helplessness for them. Two of my nieces, separately and unknown to each other, pleaded with the agency nurses who came twice daily to increase the morphine dose. But they could not, any more than the hospital nurses could. One said, ‘If you knew how many times we are asked that! We would willingly do it. All over the country, in and out of hospitals, people are suffering like your dad. It’s so unnecessary, but no one admits it’s happening.’

David’s wife and children took turns to be with him night and day. One said to me she’d sat for half an hour with a pillow in her hands, trying to screw her courage to the sticking point. But she could not suffocate her own dad.

In the end David, determined to end the pain, refused any more antibiotics, so allowing the next dose of pneumonia to kill him. Dying of pneumonia is a horrible death. Basically you drown, slowly and painfully, as your lungs fill with mucus and you cannot breathe. David’s family had to endure the sound of laboured breathing for the last five days, a constant loud ‘death rattle’. They had to bear the sight of their father and husband, thick green discharge running from mouth and nose, veering from semi-coma to excruciating pain. Death is always distressing, but in 2012, with all our talk of respect and consideration for others, how can it be that a wife ends up praying for her husband to please, please, just die?

Surely all that is needed is something like a hospital protocol that if the patient and the next of kin want to end the misery, and two doctors agree the patient will be dead in a month anyway, they can increase the dose of drugs to the level sufficient to alleviate the pain, even at the risk of death.

If that is a step too far, can we not at least accept Lord Joffe’s proposed Bill which would allow, if not ‘mercy killing’, at least ‘assisted suicide’? This would make it lawful for doctors to prescribe, though not to administer, a drug that would cause death. The patient would have to request it, and take it while still capable of doing so.

The present state of affairs is monstrous. With 80 per cent of the population in favour of assisted dying, what are they waiting for?

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Show comments
  • char faber

    i totally agree with you my wonderful teacher..love char faber

  • Sharon

    I am so sorry for your loss.. My father died this summer and the death rattle was horribly distressing to hear, even though I am a physician. We were lucky that the hospital staff was very receptive to our requests for pain medication and sedatives. You are completely right. In the 21 st century, no dying patient should have to suffer like your brother did..

  • Kelly

    I sat with my grandad 8 hours a day for 17 days. He had terminal cancer and pneumonia. The doctors decided the couldn’t treat him any more and that he was in the dying stage. This was hard to take, but, watching him slowly drown and seeing the pain and begging on his face was excruciating let along the horrid death rattle. I can’t forget those last 2 and a half weeks as his suffering is burnt into my mind.
    I don’t understand why when they decide a patient is in the dying stage and can never get better they don’t have a dying procedure, that if required /requested by the next of kin the doctors can help them slip away quickly pain free. My Granadad unfortunately never slipped into a coma, 1by 1 his organs slowly shut down and his lungs filled up. I wasn’t just horrible for me but it was so scary and painful for him. I’m not saying euthanasia should be allowed but if a patient is going to dye imminently why can’t they be put into an induced coma to skip away pain/worry free?????

  • NaomiMuse

    The experience of Pru’s brother is awful and should not happen. Pru’s experience watching this, was awful too and not easily expunged from the memory. Tweaking doses to enable good pain control along with the proper mattress and nursing practice, should enable those terminal days to be comfortable so that banter, wit and the humour that is always possible in these situations can come to the fore. These are precious times, and should be as pain-free as possible. One has to ask the hospital for a gold standard review as to why it was not.

    My husband died in March, at 51, of two cancerous but unrelated brain tumours. After his healthy spine was destroyed by the steroids in 6 weeks flat, he suffered a lot of pain both before and after admission to hospital because the doctor would not prescribe anything more effective than codeine. The physio thought that was wrong and the oncologist understood that his general health had deteriorated too much and his pain levels were dreadful and commissioned the ambulance to get him into hospital.

    Hospitalised for 5.5 months, I battled to get him home because of failures in the hospitals he was in, once his spine was stabilised in a carapace of a brace. Eventually I had almost threatened legal intervention on the neurology consultant who was standing in his way for weeks, he came home.

    That became a totally different story, our GP was splendid, the district nurses splendid, and the two carers, who alternated, were amazing. I slept in the same room, leaped out of bed whenever he called between 8 at night and 8 in the morning, took charge of the medications apart from the syringe driver which is the district nurse’s domain. He was comfortable, not sleeping more than essential and the GP told him he would be ‘kept comfortable’. We kept him clean, cleaned his teeth and mouth, gave him food he loved, albeit mashed up, and massaged him with aromatherapy, which he absolutely adored. Smooth sheets, good pillows, nice food and sensitive people are what matter once the pain is controlled. Cirque de Soleil on tv engaged him as much as it had when we went to the Albert Hall in earlier years.

    He died a natural death, gradually sleeping more and more. He watched the deer in the garden of the rented house, and the bird feeder just outside the patio doors was constant interest too.

    What I learned is that every patient needs to have a champion. They cannot fight their own battles when they are so ill, and the champion has to be someone who will preface every action with the combined questions, ‘what does this person want and what do they need?’ Then you have to get on with it.

    I share Pru Leith’s horror of what happens in acute medical wards and life was much better when my husband got home. Within the 4 hospitals that my husband and I stayed for those 5.5 months, the shortcomings were always surprising and often shocking, as well as overdosing and underdosing of medications by the staff. Things should be better but it needs the vital questions to be asked by the staff at all levels, rather than covering their own backs.

    What it does make me think, now, is to ponder on who I might trust to be my champion, if I come to need one as time goes by. We are all very vulnerable.

  • Lynne

    Thank you for raising your voice. People need to listen now as it is important to make sure the Draft Bill is phrased to include people such as your brother and your family in their suffering. Palliative solutions can of course be part of the answer they are not the whole answer for everyone.

  • Manxmog

    My heart goes out to Prue, and to all of David’s family. My father died of lung cancer a year ago, and memories of those final weeks never fail to catch my breath and stop me in my tracks, whatever I am doing. Remembering what he endured uncomplainingly, and with dignity and wry humour, still evokes strong emotions. This is a life experience no-one can easily prepare for, as discussing death is largely taboo and makes most of us feel scared, repulsed, and vulnerable. However, I feel we would all benefit from being able to talk with our loved ones about what we would wish to happen/not happen during our final days and weeks.

    Of course, in an ideal world we would all have timely access to good hospice care: with my father that was indeed the case, and he died relatively peacefully and with good pain control thanks to the exceptional care he received, for which we will always be grateful. However, I know that he was one of the lucky few, and that many others are not afforded the same important opportunities.

    End of life care choices should include hospice, or hospice-at-home care for everyone who needs/wishes it. Alongside this, there should also be the option of assisted dying if the individual has had enough of the dying process, and no longer feels they have acceptable dignity or quality of life. These choices should be seen as carrying equal weight and legitimacy, rather than the latter being seen as a failure of the former.

    We witnessed the administration of strong pain-killing drugs during the final hours of my father’s life, knowing that the doseage involved would undoubtedly hasten his death, a practice that is allowed under the rule of “double effect”. This is a time-honoured method of easing patients out of their suffering, and to my knowledge there has never been an outcry that this is “mercy-killing”, or euthanasia. It seems to me to be right and reasonable, therefore, to grant the individual the same choice whilst they remain alert and able to rationally choose for themselves. For me, knowing that option was available to me would provide immeasurable comfort and peace of mind, even if I never chose to use it.

    At present, the professional codes of medical and nursing staff dictate that they are unable to give the individual fully balanced and unbiased advice regarding assisted dying, so they have to turn to sources outside this country, or worse, attempt it themselves, alone and frightened, with no guarantee of the outcome. If the caring professions are sincere about providing “patient-centred care”, this means facing up to these difficult and emotionally demanding issues, rather than hiding behind inflexible and outdated protocols at a time when their patients most need information and unbiased advice.

    We all have a human right to life, but surely equally to make informed decisions as to the timing and manner of our death, if terminally ill and of sound mind. Other countries and jurisdictions have shown it can be safely legislated for, and the “slippery slope” argument has been disproven. Those who would protest on religious grounds would be completely at liberty to suffer to the very end if their beliefs dictate. But this vocal minority should not be allowed to dictate to the majority who acknowledge the current moral and ethical dilemmas, yet support and demand that our politicians and legal expert come up with safe and workable legilslation to apply to this most human of problems.

  • Badaroger

    What a heartbreaking tale, but terrifyingly familiar. I was ‘lucky’, When my beloved father was admitted toa large feted teaching hospital with terminal lung cancer and a bout of pneumonia his distress was tangible and frightening, for him and us. After a few hours of horrible strugling on his part, the usual lookingor scuttling away from the medical staff, I pleaded with a young houseman for some help or relief for my father. He satus all down and told us we could relieve my father’s stress with a morphine injection…but that he might not then have the strength to fight the infection in his condition…his unspoken message was quite clear, we accepted his blessed gift and my father smiled and slipped peacefully away within the hour.

    I often think of that young man and hope that his humanity has got him far in his chosen profession

  • http://www.facebook.com/annabel.kanabus Annabel Kanabus

    There is supposed to be a big move to patient centred care with cancer care, and improving the patient experience. Hence a recent national survey on the cancer patient experience. This was certainly not a good experience for the patient. So if the patient wants the morphine and is aware of any risks (and it is not clear anyway how much of a risk there is) then why not let the patient have the drugs. Does it need to be any more complicated than that?
    Why is it that this is still happening so many years after Cicely Saunders started the hospice movement and believed that everyone should have a “good death”. If my cancer returns I hope that I will not have to demand and plead for the drugs I need.

  • http://www.facebook.com/annabel.kanabus Annabel Kanabus

    Why don’t you “name and shame” the hospital concerned. This might be the only way that other patients at that hospital will have better treatment.

  • Jesus_Mohammed

    My partner’s mother is in her 80s, she has dementia, she is incontinent (front and back), she cannot move unless moved in a wheelchair, and we are paying for her to be cared for 24/7 in a home – where she causes staff, patients, and visitors endless grief due to her irrational and childlike behaviour. A massive growth has just been found in her neck. The doctors say if it is not removed she will choke to death. She is currently having enormous difficulty breathing. The doctors insist the growth must be removed. They believe that when it is biopsied it will prove that she has cancer elsewhere in her body. They are talking about her “having” to undergo chemotherapy. If I know anyone for whom it would be best to die quickly and peacefully, it is her.

    • ma cook

      not true..if she is incompetent under the MCA 2005, and did not leave an advance directive specifically requesting any treatment, the doctors can act in her ‘bestinterests’ and decide the treatment would be ‘too burdensome’ for her….

  • argonsac

    Minority groups such as Pro life and some religious types have too much influence on this subject.When will we have common sense answers to this ?

  • http://www.facebook.com/robert.dammers Robert Dammers

    There is a world of difference between assisted dying, and supplying enough morphine that death can be faced without pain, even though that may hasten death. One is morally difficult – a slope well-proven to be very slippery. The other is a moral imperative – and does not need anyone to agree to “end the misery”. It is simply a matter of preventing misery without the aim of hastening death.

  • JoJo

    In the US we have home-based hospice, a program for patients with one family member (at minimum) at home, as in this case. They get all the narcotics they need. Also we have longer acting narcotics and even pain pumps. Brits spend half as much on the NHS as we do in the US on our health care (per capita), then endlessly complain about quality. Incredible.

  • ma cook

    He could have been put on the liverpool care pathway at any time since 2003 and died in under 29 hours after refusing all food, fluids and medical care apart from morphine for pain or breathlessness, and midazolam for anxiety Prue..he was very badly advised….trouble is, 130,000 elderly patients were not even asked before they got put on it….and most werent remotely ‘terminal’ either ….just expensive to treat, and considered to be ‘useless feeders’ to Jeremy Hunt and Norman Lamb. In Germany and Italy, the LCP has been derided by hospice staff for ‘giving hospice care a bad name’ , and being used to ‘save hospice electricity bills’…some people already have ‘assisted dying’..trouble is, they’re elderly, working class , powerless and haven’t specifically requested it.

  • Caritas

    Dear me this is tragic. It was so avoidable with a little bit of research. Others have mentioned the current medical ‘best practice’ below but for those with the ability to make the decision the obvious route – easy, cheap and actually pleasant – is to buy a cylinder of pure Nitrogen gas (sold for welding) and a mask. As Michael Portillo’s excellent Horizon programme on the Death Penalty demonstrated (it is still available on his website) it is technically suffocation but as our brains cannot detect the absence of oxygen there is no sensation of suffocation! One goes light-headed and carefree before lapsing into unconsciousness – death follows in about 3 mins. Suicide is legal and the only issue is the law on assistance where the person is totally paralysed – like Tony Nicklinson. Expecting medical professionals to break their Hippocratic Oath is a road best not travelled in my opinion – already they make life and death decisions on the basis of funding. The law will change when it has to – meanwhile we will not be opening the floodgates to mass murder by using Nitrogen people!

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