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Planning Well: An (Un)Expected Journey with Hospice UK’s Sarah Russell

Dr Sarah Russell | Hospice UK | Elder

Head of Research at Hospice UK and Florence Nightingale Foundation Scholar, Dr Sarah Russell has over 25 years’ experience in palliative care. We talked to her about the positioning of death in modern society, the idea of “dying well” and the importance of advance care planning at any stage of life.

How and when did you know that you wanted to work in palliative care?

I’ve been a hospice and palliative care nurse for over 25 years, but I’ve been interested in death and dying since I was a little girl. I lived abroad when I was young, and there’s a picture of me aged ten years old at a funeral in Ghana in West Africa, transfixed by the music and the sound and the power of mourning.

When I trained as a nurse in London in the 1980s, I looked after a young woman dying of cancer in the hospital and spent most of my week of night shift with her and her family. That’s when I knew that I really wanted to do hospice and palliative care because while death and dying is chaotic, scary and uncertain, it’s also time for sharing and companionship and not being afraid of the unknown.

Is death a transition for the person and the family, and how can you as a nurse help them make that transition?

It’s interesting where we position death and dying in our society. Who owns it? Is it a medical event? Is it a social event? As a nurse, one of the things that we do is we bridge the gap between it being a medical event, in terms of your body deteriorating and stopping, and the social event which is about your relationships with those around you, who you are and what matters most to you.

Broadly speaking, death is a bio-medical event because you’re either alive or you’re not - but dying and how you live with that knowledge is much more of a social-cultural event. It’s about our relationships with others and how the bio-medical impact of the illness is affecting us as a person.

When we’re dying, often it’s not linear in that lots of things are happening - and so it’s valuable to have somebody who is knowledgeable about the bio-medical process, but also in touch with you as a human being.

What’s our view of death and dying in the UK and does it differ from other cultures?

Well, there’s ‘Culture’ with a big C, and there’s ‘culture’ with a small c! Within families and networks perhaps there’s culture with a little c. How do we as individuals and families face death and dying? Individual family dynamics will be important in how we face dying and death.

Whether it’s the rites and rituals of funerals or religious or spiritual frameworks, we all need something to hang the pegs of death and dying on. It helps us to make sense of it, find a way through it as well as navigate new or uncertain experiences and feelings.

And while we could say that the UK approach to death and dying has evolved from a rights-based belief structure in that we have the right to have information, make informed decisions and consent to treatment and care, it is also more nuanced and subtle than that. We also face our own emotional responses, navigate legal frameworks as well as personal and societal cultural perceptions of dying and death.

"[Dying well] is not just about it being a beautiful Renaissance painting of somebody's bed surrounded by their family – it is intrinsically about what the best way is for you."

Is death taboo in our culture, something that people don’t want to talk about?

It can be a taboo in some ways because it is about imagining your future death. Discussing specific medical decisions can be difficult, such as “should the machine be switched off?” or “what treatments do I not want in the future?” But out in the community, you’ll also hear people talking about death and dying in a social context, along the lines of, “did you hear about so and so, he passed away.”

Bereavement can also be a taboo, e.g. there’s evidence that we often don’t know what to say when someone has died, so we don’t say anything at all. Perhaps the best thing to do is to go up to somebody and acknowledge the death in a kind, and human way, say, ‘I don’t know what to say, but I just want to say I’m sorry about’ your father/husband/wife”.

There is an argument that we’ve medicalised death so much that we think it only sits within the medical and healthcare world, whereas actually it is everybody’s business - we do most of our living and dying in our relationships with others, not just in places.

The growing Death Cafe culture, for example, is a brilliant way to talk about dying out of the medical prognosis timeline. You have a coffee or meet in a wine bar and just talk about death and dying - and it could be around anything from literature and art to funeral planning.

It fits in with the idea of the Dying Matters Coalition (part of Hospice UK) of 32,000 members across England and Wales which aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life.

This year the theme is Dying Matters in Your Community, and in May we will see hundreds of volunteer-led events talking about death, dying, bereavement and future planning.

"There is an argument that we've medicalised death so much that we think it's not our business anymore, whereas actually, it is everyone’s business."

Should advance care planning be a practical part of the arc of life?

Advance care planning is an overarching term for thinking, discussing, deciding and documenting your wishes and choices in advance for when you’re going to die. We should be thinking about advance care planning as part of the natural arc of life because it’s about what matters to you, who matters to you and what’s important to you.

You sometimes hear the term ‘Living Will’, but in England and Wales the correct terms are advance statement (a written or verbal expression of your wishes and preferences), advance decision to refuse treatment (ADRT) and appointing someone to speak on your behalf, e.g. Lasting Power of Attorney for health or financial decisions.

There is also something called Best Interests, which is a way to make sure any decisions are made in discussion with you or with all the right information about you (e.g. advance care planning documents or talking to your Lasting Power of Attorney). There are a number of useful resources on advance care planning at http://advancecareplan.org.uk/.

It’s also not just about decisions about care and treatment. It could be about funerals, wills, belongings or my house or “who will look after my dog when I die?” (for more information on this contact The Cinnamon Trust).

We definitely know it’s really useful for people to do advance care planning when they’ve got an incurable diagnosis. We also know that if people do share their advance care planning, then health and social care practitioners are more likely to be able to do what they want because we know their wishes and decisions.

But I think it’s useful for people at any time of their life to think about, although it’s OK to think about it and then put it on a shelf. We don’t have to live it all the time, although we should revisit it from time to time to make sure it continues to be accurate.

Dr Sarah Russell, Head of Research at Hospice UK is a Florence Nightingale Foundation Scholar. Follow her on Twitter here.

For more information on the work that Hospice UK does, call 020 7520 8200 or visit the website.

Is it empowering psychologically to put advance care planning in place?

I think yes, and there is evidence people find it rewarding because they can start to have conversations with people they love that they didn’t know they were going to have. Just because something’s upsetting doesn’t mean that it’s a bad thing, so you may have tearful conversations but actually what happens is the family and the person have a better understanding of each others thoughts, feelings wishes and decisions.

Recently I had a powerful insight into the nuances of advance care planning, not just being about medical decisions. A person told me that even if they were unconscious and their children couldn’t get there, they wished for the phone to be put to their ear so they could hear their voices when they were dying.

That hadn’t occurred to me, I had thought about the family needing to see their mother rather than their mother needing to hear their voices. That was what mattered most to their mother, and that’s why those advance care planning nuances can make the difference to somebody feeling empowered. Again that’s why having advance care planning conversations earlier can help you with the how and the what, not just the where of the preferred place of death.

However, where people want to die is complex. We often think that everyone wants to be at home when they die, but it’s not always the case. Some people want to die in hospital, and they die really well there, or in care homes. Many reasons influence where people want to die.

In my own research, I was struck by a young woman saying to me, ‘I don’t want to die in my own bed because I don’t want my children to remember mum dying at home, that’s what is important to me’. So that’s why advance care planning is an ongoing conversation, thinking about the whole social, emotional, spiritual and physical aspects of dying.

What constitutes ‘dying well’?

Maybe it is whatever dying well means to you. I’ve seen people die and thought, “oh my goodness, why would they want to die like this?” But it’s not just about it being a beautiful Renaissance painting of somebody’s bed surrounded by their family – it is intrinsically about what the best way is for you.

We also know from research that there is something about being pain-free, comfortable, at peace, having resolution about things that matter, and having those that matter to you with you or in contact with you.

And we mustn’t forget about the spiritual aspects, (the shorthand of that is spirituality is about having meaning and connection to others) for everyone with any illness. For example, somebody dying with dementia, who can’t remember who they are, can have spiritual wellbeing if they still feel connected to people around them.

Has there been a change in palliative care over the past decade?

I think there is now a challenge as to what end of life care actually is, and in the hospice movement, we’ve definitely moved away from saying hospices are just about being places to die in.

Palliative and end of life care is about helping people live well until they die not just about death. It’s about an approach to care provided by different members of a team in hospices, hospitals, care homes, community and at home.

A lot of hospices now do resilience, rehabilitation and wellbeing work. In fact, the recent Hospice UK 2017 report tells us that overall 57 percent of hospice care takes place in the community, 17 percent in outpatient care, 16 percent inpatient care and 10 percent in day hospice services. I think we have an approach now that is more about assessing complexity of need rather than just prognosis and diagnosis.

Both are important, but it’s about what the needs of each person are and who can address those needs best, such as in the case of the death cafes we talked about earlier - it is about a hospice approach as much as a particular place, setting or team. I think in the next few years we will continue to see new collaborations and developments in hospice and palliative care.

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