John is sitting in a hospice bed with tubes inserted into his nostrils, helping him to breathe. “I don’t have any fear of death,” he says. “The only thing I fear now is life.”
Death is an inevitability for us all – arguably it’s the only certainty in life. Many people are still scared of it, however, and, as a result, shy away from the conversation altogether.
In BBC2′s ‘We Need To Talk About Death’, consultant anaesthetist Dr Kevin Fong interviews terminally ill people (and those who care for them), asking some important questions about dying. When is the right time to stop aggressive medical treatment? What are the alternatives to dying in hospital? And does a better death always have to mean a shorter life?
It makes for a fascinating and sometimes saddening watch, knowing the people on screen might not be alive today, and it’s also a valuable lesson in why we shouldn’t shy away from discussing death with our own loved ones.
Here are some of the lessons we learned from the show.
1. The Stigma Around Dying Is Huge.
A lot of people aren’t like John when it comes to death – there’s a huge stigma, which leads to people refusing to talk about it and not accepting that it’s coming. This can in turn influence lots of things like how and where we die.
A major survey by Co-op Funeralcare revealed just how reluctant people are to have the discussion: almost 5 million people say they are too uncomfortable to talk about their own death at all, but almost 13 million UK adults admitted that while it did make them uncomfortable, they would be willing to talk.
2. We All Have Difficult Choices To Make.
The show explores an interesting question: whether it’s best to aim for a longer life, which might involve harsh medical treatments that make you feel ill, or a shorter life that’s pain-free and perhaps more fulfilled as a result – you get to resolve relationships, complete tasks and consider what kind of meaning you attach to your life as it ends.
Rob George, medical director at St Christopher’s Hospice, said doctors can often make things worse by trying their best to cure, rather than focusing on making people comfortable. “Doctors who want to do good often think that the good being done is by doing something,” he said. “And, in effect, they’re subjecting us all to death by one thousand cuts because we are all dying, we’re all going to die, and the question is whether medicine’s going to help or hinder the quality of that passing.
“Just to have treatments because they’re available can end up being the worst of all worlds.”
A pervading theme throughout the programme is giving people choice and empowering them to make their own decisions about end-of-life care, rather than leaving it in the hands of medical professionals.
3. Dying At Home Is Important To Most, But Half Of Us Still Die In Hospital.
Around 500,000 people die in England each year. However there is a major mismatch between people’s preferences on where they would like to die and their actual place of death. Dying Matters research shows that around 70% of people would prefer to die at home, yet around 50% currently die in hospital.
The show highlights that palliative care can allow people to die at home peacefully, rather than in hospital where there is less support. Again, it’s important to talk about your wishes and acknowledge how much time you have left, rather than simply brushing the issue aside.
4. Do We Have To Choose Between Quality And Quantity Of Life?
Underpinning the entire programme is the debate over the relative value of major medical treatment versus palliative care. The latter focuses on providing relief from the symptoms, pain and stress of a serious illness rather than focusing on curing it.
Dr Katherine Sleeman, King’s College London, said people worry that there has to be a trade off between quality of life and quantity of life, but that it might not be an either-or situation.
“People understand that palliative care might improve their quality of life, it might help improve their physical symptoms,” she said. “But they worry that they will be giving up on fancy medical treatments which will therefore reduce the quantity of life left – that palliative care will hasten their death.”
There is quite a lot of evidence that that’s not the case – “Yes, palliative care does improve people’s quality of life, but in some circumstances palliative care even improves people’s quantity of life. So there’s no trade off.”
5. It Is Possible To Have A Good Ending.
The phrase ‘palliative care’ is often associated with dying – for some, it’s synonymous with the last few weeks or even days of a person’s life. But increasingly people are starting palliative care earlier in their illness and it’s helping dramatically. It’s about the business of life, rather than death.
In St Christopher’s Hospice, life is to be enjoyed – people have acupuncture and foot massages, they drink wine, have nice lunches and try out arts and crafts, despite knowing their days are numbered. One person jokes: “I’ll be dead by the time I’ve learnt that.” There’s a sense of community and everyone knows what the end game is, but they’re living the best lives they can before that point.
‘We Need To Talk About Death’ airs on BBC Two on 23 January at 9pm.