Dr Kathryn Mannix, a leading palliative care specialist and author, talks to VIEW editor Brian Pelan about why we need to have more conversations about dying and death and the vital role her sector carries out in helping people to cope with various terminal conditions
Question– Can you tell our readers a little about yourself?
Answer – I grew up in the north west of England. I went to a medical school up in the north east of England and met a ‘Geordie’ on my first day and married him. So, I stayed there. I have two children – one is a primary school teacher and the other one is a nurse.
Q – How would you best describe what palliative care is?
A – First of all I’d say the thing that it’s not – it’s not only about dying, it’s about managing symptoms the best that they possibly can be, so that people are well enough to live the best life they can, for as long as they can.
Q – What, in your opinion, has been the key advancement in palliative care?
A – When I first started in it, it was almost entirely a cancer-focused speciality. Palliative care has gradually moved into treating many more long term conditions such as heart failure or liver disease.
Q – What could we do better when it comes to providing palliative care?
A – We could fund it properly – that would be an excellent start. I also think that because palliative care started as a kind of reaction to the over-treatment in cancer care in the 1960s it commenced outside mainstream health services with charitable hospices being set up. Then, gradually it was realised how much benefit that palliative care can give to patients at all stages of lots of different illnesses. So hospices were asked to get involved in hospitals and the community. So bits of it were funded but it has never been properly planned on a population basis into the healthcare planning for a major city or a big rural area.
Q – Your book, ‘With The End in Mind – How to live and die well’ – deals with dying and death. How important is the art of storytelling to you when it comes to talking about death?
A – I think that storytelling is the only way to do it. You can’t always talk to people about research findings.
Q – What do you think about how the mainstream media covers the subject of dying and death?
A – The difficulty is that you’ve got to sell the news and plane crashes sell, but planes landing safely and on time don’t. So, what is the equivalent of the plane crash reporting of death and dying? If all you knew about air travel was what you read in the media you would never get on a plane. So, if you only know about dying what you read in the media, then you will think that services are appalling, nobody answers the phone, pain is terrible, there’s panic and choking at the end. We don’t see the process of normal dying.
Q – What is the best advice you have for families, relatives and friends whose loved ones are dying?
A – Don’t wait until somebody is dying. Talk about it now. When I want to get families to sit down and talk about it, my weapon of choice is a cup of tea. It’s a really tender conversation. I know that I need to cover the fact that people will become more tired, the fact that they will sleep more, the fact that they will eventually lapse into unconsciousness. This is all in my book. Then I tell the families that those last moments of someone’s life will be gentle. It might a bit snory, it might be a bit noisy – you’re not going to look at your most beautiful – but it’s not going to be horrific, it’s not going to be panicky, it’s not going to leave them with nightmares. It will actually leave them reassured that they saw something that was more peaceful than they were expecting. That is kind of a gift for them to take into the rest of their lives because that’s what normal dying looks like.
Q – You have talked in the past about us living “in a death-denying society”. Has there been progress in getting people to start talking more about death?
A – I think there has been a bit of movement. I know there have been books written about dying, but that they just haven’t found the audience that my book has found. I don’t think it’s because it’s a better book, I think it’s just because the timing was right. I think we’re also starting to see increasing factual documentaries on radio and television that follow real lives and talking to experts rather than just opinions. I think that’s really helpful. So, I think it’s starting to change, but it’s a bit like trying to turn the direction of a tanker, it’s going to be very, very slow.
Q – When many people hear the word ‘palliative care’ – they immediately think that it means the end of life? How do we change that narrative?
A – I think that’s really tough. There’s a lot of talk about changing the name of the speciality. In the US, they are increasingly calling it ‘supportive care’ as a more neutral thing, but my prediction is you won’t want to see the supportive care team because you know what that means. You have to be brave. You have to use the D words. You have to say palliative care team or supportive care team, and you have to trust that the team will have the professional skill to be able to put somebody, who is a bit anxious about seeing them, at their ease. We never have met someone who tells us to go away after they’ve met us, but there’s an awful lot of people who never get the opportunity to meet us, because the doctor or nurse, that’s looking after them, is too scared to have that conversation with them.
Q – Do you think it’s become easier to live longer, but harder to die well?
A – Yes, I do. I think we’re in a whole new territory of reaping the mixed benefits of medicine saving people’s lives. We’re now in a position where, particularly, the possibility of a cardiopulmonary resuscitation, for example, CPR seems to be applied on every death bed unless there’s a certificate that says this person has opted out, or this person’s doctors have advised that it wouldn’t be helpful. We need to regain the wisdom that everybody had 100 years ago when everybody understood about normal dying.
Q – The comic Woody Allen once quipped: “I’m not afraid of death, I just don’t want to be around when it happens” Does humour have any role in palliative care?
A – Yes. People who work in the palliative care sector, along with the police and paramedics, do use humour as a way of coping. I think it’s something that helps you to keep an emotional balance. Patients and families also use humour as well.
Q – One reviewer, writing about your book, said: “In her desire to show that death can be well managed, she leaves out the mess, fear, pain and unpredictability of dying … However we dress it up and think about it, death remains blankly ungraspable and stark.” What did you think about her remarks?
A – It was a very thoughtful review, and I don’t disagree with that notion, other than to say that my book is talking about the physical process of how our bodies die. It’s talking about the emotional journey that people make over that period of time in terms of dealing with separation, in terms of dealing with farewells and reconciliations. What it’s not talking about is the existential angst which we cannot palliate – it’s the human condition. I would invite that critic to go back through the book and to notice the suffering that is in the book. I’ve written about it and how people live alongside it. In over 30 years of palliative care I’ve been involved in end of life care of between 10 and 15,000 patients. I have seen distress, and I have sat beside beds where I’ve thought: ‘This is horrid, I would hate this.’ But I can count those cases on the fingers of two hands and maybe a couple more. If we can manage the symptoms, the process of dying itself is something people can manage well and that families don’t need to be traumatised by it. They are left sad, but they are not left terrified.
Q – Has your work in palliative care helped you to come to terms with your own mortality?
A – Absolutely. The more I see of normal human dying, the less afraid I am of it.