At life's end: dying painlessly and peacefully is the goal of most

As the assisted dying bill goes to the Lords, doctors explain how most wish for palliative care, friendship and dignity at the end

A good death, like an easy experience of childbirth, is not something that happens to everybody, and it is impossible to predict who will slip away painlessly and at peace and who will find the process far harder.

"It's a lottery," says Ann Munro, a clinical ethicist who works with the dying and those who care for them in a large NHS hospital. "You never really know what it is going to be like."

The top concern of the dying is that they do not want to be in pain – then that they do not want to be a burden and thirdly, that they do not want to be alone. The first and last of those are sometimes hard to achieve.

Morphine is no longer the only drug. Palliative care doctors now have a range of medications and will use combinations to achieve the best possible control.

An argument used by many against permitting assisted dying – the subject of a long-awaited debate in the Lords on Friday – is that pain control can be achieved. But studies show it is complete in only 60-70% of cases. There are neurological pains and bone pains when people are dying that are hard to relieve.

"Once out of the standard [drug] regime we don't know which combination to use next for this patient," says Bill Noble, medical director of the Marie Curie Cancer Care and a palliative care doctor for more than 30 years. "If you haven't got complete pain control it isn't necessarily because the doctor doesn't know what he is doing. There are people who never have their pain relieved."

Dying can also involve a loss of control and dignity, which some find very hard. There are things that happen as the body packs up that the doctors can do little to alleviate. Munro talks of the bowel perforation experienced by some ovarian and bowel cancer patients, which can lead to vomiting faeces.

One of her early patients, a frail and elderly lady, was passing faeces through her vagina. "She said to me, 'I don't want to be here any more. I want this to stop. What can you do about it?' She found it humiliating and grim and she was going to die."

But surgery is not an option, and all that hospital staff can do is try to help people to cope with a bad situation.

In other parts of Europe, as in the UK, doctors will not speed death; they will sometimes put patients who are suffering to sleep and not wake them up again. "There are cultural differences within Europe," says Noble. "The cultural norm in the north is to die awake and in the south to die asleep."

He adds: "Some people will literally say I don't care what you do – I don't want any pain. Others will say I don't care about the pain, I just want to be awake and in control. Doctors here will not put a dying person to sleep. We think that is bad practice."

The hospice movement provides exemplary palliative end-of-life care to those fortunate enough to be able to access it. These days hospice teams help people die in their own homes too. But few people without a cancer diagnosis get palliative care: only 20% in Scotland, according to research by Edinburgh University and Marie Curie Cancer Care last September.

Most people end up in a bed in an overstretched hospital where doctors committed to saving lives sometimes struggle with helping those whose lives are ending.

Surveys show bereaved relatives are a lot less happy with the care their loved one receives while dying in hospital than at home or in a hospice. Part of that, says Munro, is because they do not get the care they need too. Hospices look after the bereft as well as the dying.

"It is really, really, hard to do it in a hospital. That's often why the people who are left report these things in a very traumatised way," she says.

Friends and relatives will remember vividly the bad times, when the patient was in pain, even if it lasted a short while and was then relieved.

Most people say they would like to die at home, and most people do not get the chance. Munro says there can be too rosy a picture of what death at home does mean.

"I have been at home deaths and managed them, and they have been absolutely beautiful and lovely, but it is a bit like home births. You can make as many birth plans as you like, but things don't always work out like that."

Mayur Lakhani, a GP and chair of the National Council for Palliative Care, says people need to make their wishes known in advance.

The Sue Ryder charity, which provides hospice care in 13 centres and the community, also actively teaches doctors how to raise the difficult subject with their patients.

"Seventy-five per cent of deaths can be anticipated at about 12 months," Lakhani says. "The clues are when somebody is spending most of their time in bed, when they have a lot of hospital admissions, when the treatment is not working.

In his part of Leicestershire palliative care in the community is well established. "They get a hospital bed and a special mattress to prevent bedsores into the home and a commode and an oxygen cylinder and drugs like morphine. The NHS is brilliant in the way it responds when it goes well, but it has to be known in advance," he says.

Some drift into unconsciousness in the last days, barely eating and drinking, sleeping more and more until they no longer wake up. Lakhani says they also can have surprising moments of lucidity, when they are awake and alert. "I have certainly seen them. Next of kin will describe them as well."

Noble says home deaths even make sense financially. A study in an English town where patients received care at home found it cost £3,000 a head – less than hospital care, not more.


Sarah Boseley, health editor

The GuardianTramp

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