Living and Dying Well Part II

Our first Campfire Conversation in collaboration with Pilgrims Hospices welcomed a community of people living with and affected by dementia, as well as practitioners from the arts, health and social care. It was important to convene this larger group of 30 people to build connections across disciplines and get an overview of the issues at hand.

For our community of people living with dementia, it was also important to explore the concrete facts of what support is needed to live and die well with dementia. With this in mind, we held a second, more intimate Campfire Conversation at Cosy Club in Canterbury to explore these nuts and bolts in more detail.

We invited Natasha Steer to host this conversation. Natasha is an artist and co-founder of The Brown Bread Collective, a group specialising in bringing people together for open conversations about death, dying and bereavement and delivering training to the NHS and A Better Medway Champions to help this happen. In this article, you can read more about what we found out together. Find the first article in the series here.

For this part of the conversation, we explored the period at the end of someone’s life when it’s harder to engage with the things they enjoy doing: when it’s harder to express what you want, and so wishes may be ignored. While there is lots of research about end-of-life care for the general population, there is less research focussing on people living with dementia. 

Dawn, NHS Dementia Envoy, Bright Shadow Trustee and Bright Times Reporter, who lives with dementia, opened the conversation by sharing her fears about being able to live fully at the end of her life. Dawn shared that even people who are surrounded by loved ones might no longer be able to express their wishes – or their fears. They might be assumed to be content, when inside they are afraid, and unable to communicate this verbally. For Dawn, these fears are compounded by living alone with only limited support from family. 

“My mum had dementia at the end, and she lived a long way away from me, and I went and stayed a few days. And in the night, she had me out of bed all night. She was so worried about the carers coming. And she kept saying to me, what will I do if they don’t come? I was there! And unfortunately that day the carers were late. She said, what’s going to happen? I won’t be able to get up. She totally did not take into account that I was there and I would have got her up. She just focused and she was so worried. What will happen? What will happen? And that was in her head all the time.”

Keith Oliver, NHS Dementia Envoy and Bright Times reporter, echoed these concerns, adding that being labelled ‘service user’, and ‘client’ might obfuscate his human-ness, which might then compound challenges in communicating his needs and wishes. One way to guard against this is to ensure that wishes are recorded accurately and early, particularly in the form of Advance Care Plans and ReSPECT forms. A paramedic offered that these forms can be invaluable when, for example, an ambulance is called, because the ambulance service is set up to sustain life – with advance planning, it is easier for paramedics to respect wishes to stay at home rather than taken into hospital. 

People living with dementia can be supported in this by loved ones, by medical professionals, by the Pilgrims Hospices team, and by alternative providers including death doulas. With that said, some members of the group expressed concern that it was challenging to convince primary healthcare providers to engage in conversations about wishes around death and dying because of their dementia diagnosis. 

People living with dementia in the room asserted their strong desire to continue having these conversations, and that loved ones and medical professionals can help by facilitating them rather than shutting them down or deferring to others. 

Gill Ashington, Photographer, NHS Dementia Envoy, Bright Times reporter and Bright Shadow Trustee, who lives with dementia, shared a story from when she was working in a care home, looking after a resident with Pick’s disease:

“She was on end-of-life care. She didn’t have any family, or none who visited her. I got to know her by looking at her face. Picking up non-verbal communication is vital. I got into trouble because they wanted to just look after her in bed. I knew she liked sensations on her skin, and it was raining outside, so I got her into a wheelchair and covered her over to keep her dry, and I took her round the garden in the rain. She could feel the rain on her face, and she had her tongue out, and she was laughing, because she had glasses on and the rain was hitting her lenses. For that moment, I caught a smile. Those are the small things that you can do for a person, and it’s not rocket science – you just need to be human.”

Bright Shadow Campfire contributors shared lived experiences of supporting people in pain, an issue that can be compounded by challenges in verbal communication towards the end-of-life, and complications like delirium – often an overlooked indicator of pain as it may be assumed to be ‘normal’ for the patient with dementia. Contributors shared that difficulties in navigating such situations with their loved ones can frequently be experienced in busy hospital wards, another reason for avoiding unnecessary hospital admissions. 

At its core, supporting people living with dementia to die well comes down to having open conversations about wishes, early and often; personalised and person-centred care; and responding to people’s verbal and non-verbal communication. 

This humane, personalised approach to end-of-life care is at the heart of the ethos at Pilgrims Hospices. Carrie Mandeville, Think Talk Act Clinical Programme Manager for Pilgrim’s hospices says “For people living with dementia, identification of symptoms and appropriate management and review can be challenging at the end-of-life, so collaborative efforts to support early future care planning and early identification of deterioration is key.”

To explore these themes, we’ll share three case studies from our conversation.

Jodie’s story

Jodie, our Doing Dementia Differently Project Manager at Bright Shadow, shared challenges she encountered around choice and control while caring for her grandmother, Mavis, who lived with dementia. Across numerous hospital stays, Mavis was shut out of conversations about her care, with clinicians regularly misunderstanding Power of Attorney as a removal of rights from the patient. 

“She had a fall one time and broke her arm, and it turned out she had a rare cancer at the site of the break. We would never have known it. They spoke to us in the room without her about amputating her arm. We said, ‘We need to make these decisions with her present.’ But the doctor was just like, ‘No, you’re Power of Attorney. You make these decisions.

She was petrified. Every time she had something done, she was petrified. She didn’t know what was going on.”

At the end of her life, Mavis was unable to eat solid food. However, she also didn’t have the dexterity to manage the liquid meals she was given, and often there was no one to support her, so she was effectively left without food as it would be removed, uneaten. These experiences underline how important it is that choice and control remain central to decisions around care at the end of life, and how misunderstandings about the purpose of Power of Attorney can be pervasive.

Gill and Rob’s story

Gill Butchard, who came along to Zest with her late husband Rob until one month before he died, and is now a Bright Shadow Trustee, shared her end-of-life journey with Rob.

“Hospital, or going anywhere, would be a frightening experience. Even going to the toilet. We walked into a disabled toilet and someone had thought it was a good idea to put really heavily patterned wallpaper on the wall. He had no idea where anything was. He said, ‘Where’s the toilet?’ He couldn’t see it amongst everything else that was going on.

It’s very difficult to know what his world was, where he thought he was.”

As Rob’s communication skills changed, Gill modified her language and used non-verbal cues to ensure Rob’s wishes remained at the centre of his care. 

“When the hospice nurse came out she said, ‘He knows he’s end-of-life.’ I said, ‘He knows because I told him.’ He’d been trying to say to me that he wasn’t one hundred per cent, because he couldn’t string a sentence together. I said, ‘No, I know you’re not one hundred per cent. You’re reaching the end of your journey.’

He relaxed because he knew he could trust me.

When they offered him a hospice bed I said I’d grab it because trying to manage medication for seizures, breathing difficulties, choking and any pain was way beyond my capability.

So I went in and said to him, ‘You’re going to go into the hospice tomorrow. I can’t have you at home, but you’re going to hospice and I’ll stay there with you.’

And he said, ‘Whatever you say is fine by me.’

Not all dementias fit the same pattern. If we don’t address these things early then we have to rely and trust on others to make those decisions for us. So if it really matters to you how you want to die, then we need to have a way of documenting that.”

Gill and Rob’s story shows the importance of being understood, and being able to communicate and record wishes early.

Dawn’s story

Dawn Horne, NHS Dementia Envoy and Bright Shadow Trustee, shared her journey trying to communicate and record her own wishes. 

“I’ve had my dementia for five years now and I’m doing okay. I live in sheltered accommodation and one day the warden said to me, ‘Have you got a Do Not Resuscitate in place?’ I said, ‘No, I want one.’ She said, ‘You speak to your doctor.’

So I spoke to my doctor. I said, ‘I know I’m okay now, but when it comes to the end, I do not want to be resuscitated.’

He refused. He said, ‘Let me think about this and I’ll come back to you.’

A year later I saw the same doctor and said, ‘A year ago you said you’d come back to me. I do want a Do Not Resuscitate order.’

He just said, ‘Well, I don’t think so because you’re doing okay.’

I know I’m doing okay, but that’s exactly why I want to make the decision now. If I’m not well enough later, you’ll say I don’t have the mental capacity.”

Keith Oliver agreed, adding “I had a similar experience”.

These three stories show the central importance of being listened to and being able to advocate for your wishes, knowing where necessary your rights so that wishes for end-of-life care can be recorded. Medical and care professionals may not always be experts in end-of-life care and the legalities around end-of-life care and consent, so it is important to empower patients with knowledge of their rights, ensuring people are centred in conversations about their care and that those around them are equipped to understand verbal and non-verbal cues.

We closed our conversation by asking what better care would look like at the end-of-life. Some of the key suggestions included:

• The ability to develop relationships with trusted professionals in order to record wishes for end-of-life care. Conversations early and often that feel psychologically safe – perhaps at yearly GP review. 
• A one-stop shop that someone can access when they are understood to be nearing the end of their life and helps them and their loved ones navigate the services available. Lots of services are available, but how and where to access them can be unclear. 
• Support navigating services on offer. Families are given a lot of information, and it would be helpful if they received more guidance through this landscape so they might spend more quality time with their loved ones, and so that this precious time could be facilitated beyond caring roles they may have adopted. 
• Care plans that look at all the needs the person has holistically: health needs, social care needs, mental health needs, communicated together so everyone is all on the same page. 
• Involving the hospice at the point of diagnosis could help with actioning all of the above.

As an arts organisation with a long history of supporting advocacy for people living with dementia through ambitious creative projects, Bright Shadow is well positioned to support people both to think about and express their wishes, as well as empower people living with dementia to continue doing the things they really want to do right up until they die. By working with Pilgrims Hospices, Bright Shadow could develop a creative offer to help people explore death in a life-affirming way. 

There are training programmes about death and dementia but less for people living with and affected by the condition. By including people with experience of living with dementia in training sessions, participants can develop a richer understanding of living and dying well. Furthermore, giving people living with dementia important roles in the community invests a sense of value and creative identity which is important to wellbeing and valuable to people learning about dementia. Pilgrims Hospices already have their ‘No Barriers Here’ programme, which can be developed specifically for people living with and affected by dementia. 

Overall, our conversations about living and dying well emphasised the importance of collaboration between professionals, clear communication and support navigating end-of-life care, and creativity’s role in helping to make plans for and live well at the end-of-life.