The last taboo

“Death is normal. We can all help each other with death, dying and bereavement.” This is the opening statement for the alliance of organisations and individuals under the banner Good Life Good Death Good Grief. Their aim is to promote community involvement with death, dying and bereavement.

However a study published in September found that primary care was remiss in  identifying people who required end of life care and planning. Only one in five patients with organ failure or dementia either requested or were identified for palliative care before dying, compared with three quarters of cancer patients. Richard Meade, head of policy and public affairs for Marie Curie Scotland said: “There’s clearly a need to focus on non-cancer issues at end of life, and seeing what we can do to address that both at a policy and a practical level.”

Professor Scott Murray, St Columba’s Hospice Chair of Primary Palliative Care at Edinburgh University says that 80 per cent of palliative funds are going to only 25 per cent of people who are dying – those with cancer.

“I could say you’re much better having cancer. Care is being given by diagnosis rather than need. That’s inequitable. You’ve heard of postcode lottery? This is diagnostic lottery” he says

One of the main issues, according to Marie Curie, which provides hospice care and supports people to die at home, is there is still a large taboo in Scotland when talking about death. The Scottish Government, it argues, should lead a public discourse about death and dying. Nanette Milne MSP, who led a member’s debate on the subject, remembers a moving experience as a hospital clinician:

“I qualified in the sixties. I do remember my first job was in a lung cancer ward. In those days very little could be done. These people have pretty horrendous surgery and were dead within six months. I can vividly remember my very first Christmas Eve, when they used to do carol singing round the wards. Seeing these guys, and you knew perfectly well from their eyes, they knew it was their last Christmas. But nobody spoke about it.”

She concedes that there is more openness now “People do talk about cancer, which they never used to. They’d whisper about the big C. They do now, and that’s an improvement.”

Margo MacDonald, who has launched a new assisted dying bill in parliament, believes the taboo is only the latest to be broken down. “I’m of the generation that really burst a lot of the taboos” she says, “I’m what you would call 70 going on 58. So when I was a wee girl I didn’t know what a homosexual was, and I don’t think I knew what a lesbian was until I was a young woman. Children of the post-war, these things, you didn’t know about.”

People are quick to research their own condition on the internet, according to MacDonald, and use the platform to discuss it with their “nearest and dearest.”

Professor Murray believes that Scotland can learn from Africa. “I was a missionary for a number of years in Kenya. Then I came back to general practice” he says. His survey of cancer patients and their carers conducted upon his return asked ‘what’s your main problem?’

“In Scotland, the main problem was not pain. What was it? It was just ‘me’. It was existential. It was about meaning and purpose” he says.

Murray asked his colleague Elizabeth Grant to do conduct the same survey in rural Kenya, asking the same question to cancer patients in their local language: “Thina Yaku Ni Uriku? So what was their answer? Ni Ururu: It is pain. Or, Ni Mbeca: Money, to pay for the painkillers. ‘I have to sell my pig, my land even’. They were physical. People would visit with an egg, or some maize and beans. So socially they were cared for. Extended families, you know? The old person is in a great place, she’s very well liked. Socially there wasn’t a problem. Psychologically, generally they were ok. ‘Do the maize and beans ask the farmer where they are going?’ That was a quote.”

40 years of pain research in Scotland can control a lot of pain, according to Murray, and pain relief needs urgently to be given to a continent which gets by on “prayer and paracetamol.”

Similarly, Scotland can learn from rural Kenya, he says. Villages and people support each other more, playing an active role right up until death, or “community cohesion”. A greater respect is given to the informal carer. “Here, they’re undervalued. A lot of carers say ‘they just didn’t listen to me at the hospital, they don’t realise what I’ve done’ so we have to simply say to the hospital docs and nurses you must really get this dialogue” says Murray.

Most importantly, communication is better in Africa, says Murray. “It’s not a character kept out in the wings. It comes in, and the fact that someone’s going to die – there might be an acceptance ‘I’m going to die. Thank you, now I know.’ Then they might have a meeting. A family meeting, for instance.”

Crucial to the dialogue, he says is getting GPs to identify patients as requiring a end of life care plan earlier. Rather than “medicalising death” in the final stages, he calls on GPs to ask themselves the question ‘would you be surprised if this patient died within the next year?’

“I would say if you wouldn’t be surprised if they died, there’s a risk of them dying, and you’re a good doctor, let’s make a wee plan just in case they died. So we know what we’re going to do. It’s like an umbrella. You go for a walk, you take an umbrella” he says.

The existing Key Information Summary (KIS) designed for patients with complex care needs or long term conditions could be adapted to include long term palliative care, argues Murray. “I started with a KIS, if I’ve started to talk to someone” he says.

According to Marie Curie, palliative care has always been about more than final days medicine.

“Palliative care is about putting the patient at the centre, because it’s the patient’s needs that are most important. And it’s about building in many ways, a care package around the patient” says Meade.

Stirling University PhD student Sally Boa won a Scottish Health award recently for her work on goal setting in palliative care. Working in Strathcarron hospice in ForthValley, Boa put conversation with patients at the heart of her work. Supervised by Dr Edward Duncan at the Nursing, Midwifery and Allied Health Professions Research Unit (NMAHP), Boa studied the quality of conversations around goal setting between staff at the hospice and patients. She found that staff were good at picking up important goals: “If somebody wanted to get married quickly, or if they wanted to go on a holiday, or they wanted to go home for Christmas, everyone would help them do that, but if they wanted to do something like brush their teeth, or walk to the toilet, then that would be missed” she says. To turn it around, Boa urged staff to “make the implicit explicit. Not to be afraid of saying ‘what’s important to you?’ and ‘how can we help you?’”

“Nobody wanted to go to Australia, or the moon. Basically what they wanted, quite often, was quality time with family” she says, “It might be just going out into the grounds of the hospice to watch their grandchildren playing on the swings. And then because that had been articulated, staff would then remember that, then later on when the patient wasn’t able to go outside they would move the bed nearer the window so they could still watch the kids outside.”

By breaking down goals into step by step plans patients could address their own aspirations and limitations. One example was a man who wanted to have a bath with a glass of whisky. Staff helped him practice getting to a chair and then to a bath, but ultimately the man ended up having a whisky in the shower.

“Another example was a man that he wanted to be able to walk the dogs in this field behind his house when he got home. Normally what would have been documented was ‘increased mobility’ but actually this time it was ‘practice walking on uneven ground in preparation for walking the dogs.’ It was much more personal, it meant much more to him. He actually got outside” she says.

Murray agrees that addressing your own physical limits can help patients come to terms with the existential angst: “The deficit between what you want to do and what you can do; that is the problem the patient has” he says.

However in an environment that gives patients more choice, over quality of end of life, and place of death, is the next logical step the time of death? It’s a taboo too far for Nanette Milne and others, who believe that life is “god given and god taken. if you take away religion altogether, my experience of talking to people, is that life is a very  precious thing, however bad that is. Quite a lot of people would say, when they are diagnosed with an illness, ‘I want to end my own life when the time comes’, but when it actually comes to the crunch they don’t” says Milne.

Margo MacDonald points to the example of Tony Nicklinson, the severely disabled man who fought and lost an impassioned campaign for the right to die in the High Court in 2012.

“Dreadful”, she says, “I mean I can cry even just thinking about it. And there was no way that any of us should fool ourselves that that man was enjoying his life. He wasn’t. He was hating every minute of it. And it was his life, and why had he to go on living it if he hated it?”

Professor Murray and Nanette Milne believe that if palliative care provision was improved, MacDonald’s bill may not be needed.

“I think if palliative care was really good that could be dealt with” says Milne.