The focus for this year’s Hospice UK Dying Matters Awareness Week (6-12 May) is how we talk about death and dying. Senior palliative care nurse Cathryn Goodchild, lead clinical educator at St Luke’s, asks why people shy away from the “D” words and explains why correct language matters.
Creating happy memories has always been a special part of Matt and Kelley Avery’s life together. A formidable, fun-loving team, they’ve certainly collected a bumper package of magic moments over the past 17 years, despite weathering some very tough times.
The couple have shared numerous incredible holidays in the UK and around the world, on their own, with friends, and with their children. They’ve danced the night away at family and friends’ weddings and been the life and soul of countless dinner parties and new year celebrations, as well as murder mystery and hot tub evenings they’ve hosted at home.
And who could forget the romantic hot air balloon adventure that former Miss Plymouth Kelley booked as a surprise that confirmed she and Matt were made for each other?
But they certainly didn’t expect to be adding to their positive standout memories when Matt was admitted to St Luke’s specialist unit a few weeks ago, weak and in terrible pain.
Nevertheless, there were a few big surprises in store for the carpenter, funky house DJ and Rat Pack fan and his wife – not least him feeling well enough to go home to Sherford, where he’s now spending precious time with Kelley, their daughters Madison, 15, and Lacey,11, son Harrison, six, and spaniel Chester, nearly 13.
On top of expert care, the whole family – including the dog – felt welcomed, supported and thoroughly spoilt by St Luke’s friendly and understanding teams who all went above and beyond to create a positive experience.
There was an impromptu birthday party for Matt, Halloween fun with pumpkins, quiet times with his parents in the hospice gardens, arts and crafts sessions for the children and a unique Plymouth Argyle treat that put the icing on the cake.
“Four weeks ago, I was up in bed in complete pain thinking that was it. I went into St Luke’s at Turnchapel with worries because you think ‘Am I going to be able to come out?’ Some people don’t. But there are people who do, and I am one of them,” said Matt. “I had such a good experience in there, the way they looked after me and reassured me all the time.”
Matt was first diagnosed with a rare form of cancer – GIST or gastro intestinal stromal tumours – when he was 31, back in 2009. The news came just five weeks before he and Kelley were due to get married. Matt had started chemotherapy treatment, but the wedding went ahead as planned at Plymouth’s Continental Hotel, with 140 guests – and more in the evening, when a Rat Pack singer sang some of Matt’s favourite songs. “The best wedding present was being told that he was responding to treatment,” said Kelley.
After a successful operation on his bowel and liver at Derriford Hospital, Matt has continued on slow release chemo treatment ever since, enjoying months and years of feeling fit and well, interspersed with sporadic bouts of ill health.
Cancer was part of his and Kelley’s everyday reality, but they didn’t let it stop them living life to the full or affect their dreams of adding to their family. Lacey was born in 2012, Matt trained hard and ran the Plymouth Half Marathon in 2015 in just two hours, and in 2017 the couple welcomed Harrison into the world.
Kelley, a former Miss Plymouth, who worked for an estate agency, said: “I thought the best thing to do was to keep to a routine with the children, with work and with life in general. Of course, the focus is going to be on the person who is poorly, but you have to be the glue holding things together.
“The week leading up to each check-up appointment would be filled with stress and tears, then that would be it for another three months. It was time to put worries to the back of our minds and we lived like that for years. It was hard going, but we had some great times.”
As a family they enjoyed lots of caravan holidays in Cornwall, heading for Polzeath, where Matt could indulge in his love of surfing and the children became confident “water babies”. Another favourite has been Center Parcs, where they relished adventures on two wheels.
Matt added: “We are quite positive people and that is what has got us through. We gradually got into a routine. I looked fit and healthy and normal and generally life was manageable.”
But despite additional expert input from Cambridge GIST specialist Dr Ramesh Bulusu, eventually the cancer spread to Matt’s bones, and he started radiotherapy treatment.
In January this year the doctors told Matt there was no more they could do to treat him and in October his health took a turn for the worse. He was unable to eat and was losing weight fast. He and Kelley had been referred to St Luke’s and they called clinical nurse specialist Debbie Hutchinson for advice.
“We got the doctor out and Debbie came too. For pain management’s sake they said let’s get you into Turnchapel,” recalled Matt. “I was not ready in my mind for that. I don’t know how it’s going to be down the road, but my feelings then were, ‘I’m not ready for this but I need it’.
“They made me feel so welcome. The care they give you is so different. I got to know all the nurses and staff and you are on first name terms with everybody, including the doctors. They are so friendly and so polite.
“They started off trying to control my pain and my nausea. I hadn’t really eaten for weeks. When I was on chemo it was a form of treatment that made me put weight on – and I liked a pasty too. But I’d gone down from 15 stone in January to 11 stone.
“When you are medicated up, days just go by and you don’t even know if you’ve been fed or not. Then, when you are feeling like you can get up and do stuff, they are still there and you realise what they have done for you.”
A week after he was admitted, it was Matt’s 46th birthday and the St Luke’s team pulled out all the stops to help make it a memorable day for him, Kelley, the children and their close family.
Matt said: “We’d had a meal out booked for the Saturday with family and friends, but we couldn’t do that. The staff rallied round and got pizza and balloons and we had a family gathering. It was just a lovely thing for them to do.” They also surprised him with a cake and a rousing chorus of Happy Birthday.
“It was very important for the occasion to be marked, especially for the children. That personal touch was just lovely,” added Kelley, who has nothing but praise for the support they received from the whole inpatient team and individuals like Debbie, and support worker Lisa who is part of the team on the Patches programme that helps patients’ children and grandchildren.
“St Luke’s have been amazing for me, Matt and the children. Patches has been great. They have provided arts and crafts and fun stuff the children can do.”
At Halloween, Kelley, Madison, Lacey and Harrison brought in Chester the dog, along with some pumpkins, and spent time together carving them into ghoulish faces in the unit’s family kitchen. “Matt was given a really, really small pumpkin to carve. Then we came out into the garden and it was all lit up. We were able to put the pumpkins out all in a row. To share that moment together was very, very important. It was an opportunity to make memories that we might not have had,” said Kelley.
Perhaps the most spectacular memories the family made together was when football fan Debbie told Matt she had two tickets for him for Argyle’s match against Middlesborough on 4 November.
“I’ve always been an Argyle fan. I’m from Plymouth so it’s going to be my number one team. I couldn’t thank her enough… and then it escalated,” recalled Matt.
Argyle player Finn Azaz, one of St Luke’s regular volunteers, went to meet Matt in his room at the hospice with volunteer Elliott Darcy, who coordinates Argyle visits for St Luke’s patients and their families. A 20-minute visit turned into an hour and a half.
“I could have been sitting in the pub with them having a chat. We got on really well,” said Matt. “Then Finn asked what is your son called and does he like football?”
The next thing Matt heard was that Finn had put Harrison forward as a mascot for the match. On the day, Matt was there in the crowd with Kelley’s dad when Finn brought the six-year-old onto the pitch in front of a huge, cheering Green Army. And that wasn’t all. Harrison was given a new Argyle kit and his sisters also got to watch the game and meet all the players.
“It was a brilliant day and we cannot thank Finn and Argyle and St Luke’s enough for all of it. It’s made the best memories,” said Matt, who is grateful to be back on his feet.
“You get that stigma about going into St Luke’s. Four weeks ago, I was up in bed in complete pain thinking that was it. They’ve sent me home with the right medication and they’ve explained everything. And we have great after care. I didn’t even know hospice care at home existed. Debbie might as well move in!”
Kelley added: “We’d felt like we were in such a hole in a way. Matt’s quality of life was quite small. When things came to the point when he was in so much pain, we thought St Luke’s would be end of life care. But there was light at the end of the tunnel and we actually got Matt back.”
She has this advice for anyone who find themself in a similar situation: “It’s important to make sure you have a good connection with someone like St Luke’s, or the Mustard Tree at Derriford.
“When they say give us a call if you need anything, do call them. Everybody needs support. You can never get through this on your own.”
The couple are also incredibly grateful to all their family – especially Matt’s mum and dad, his brother Scott, and Kelley’s parents – for being there to support them in so many ways.
Last, but not least, Matt has some special words for his children: “We are very, very proud of them. I’d like to tell them to keep being yourselves and working hard! They each have their own personalities and they are all very caring. We are so lucky.”
How we can become more compassionate around terminal illness, dying and grief in the workplace is the focus for this year’s national Dying Matters Awareness Week (8-14 May).
The devastating and often prolonged effect of losing a loved one will have been experienced by more than half of all employees during the past five years but offering the right support – in the place where many of us spend so much of our lives – is something many managers feel unconfident about, according to Hospice UK.
People often assume that those working in health and care are better equipped to cope with loss because they encounter it on a regular basis. In reality, whether you’re in a caring or support role at a hospice like St Luke’s, in a hospital or nursing home, or working as a funeral director, celebrant or spiritual leader, it doesn’t make it any easier to cope when terminal illness or bereavement comes calling in your personal life.
In fact, these extraordinary environments can present many situations that resonate deeply and make it harder for people to carry out aspects of their work, particularly in the early days of the grieving process.
Many of us will be very familiar with practical measures and advice for self-care that can be useful following bereavement, even regularly advising and supporting the loved ones and carers of people who die in our community. But, when we’re enveloped in the fog of our own heartache, it’s not so easy to listen to ourselves and recognise our own needs.
It’s comforting to know that there is always someone you can reach out to you if you are facing personal loss. In these specialist sectors of our communities we are often fortunate to be surrounded by professional, empathetic people who know exactly what to say to grieving friends and colleagues. They won’t shy away from asking how you are, listening to your worries or having difficult or painful conversations.
Sharing your feelings with colleagues is a good starting point but, depending on your organisation, your first port of call for formal support and understanding will usually be your line manager.
When you’ve lost a loved one, the last thing you need is to be under pressure to carry on working as normal. Compassionate workplaces and managers will give you permission to take time out to reflect, talk, and tap into things that can help you slowly accept your situation and begin to heal.
No two people’s grieving is the same. Each of us deals with our loss in an individual way and a good employer will be as supportive and adaptable as possible, taking into account the special circumstances we are faced with in our jobs and the need to keep services running.
Crossovers with cases you deal with professionally may inflame your personal distress. Maybe you have lost an elderly parent with the same degenerative disease as one of your patients or there’s a young person under your care who is the same age as a personal friend who has died. These are the kind of trigger points that can be avoided by accepting that someone else may need to step in to take over particular tasks for a while.
Many health and care organisations will have robust in-house policies for good practice when managing bereavement, including arranging compassionate leave and smoothing the way for your return to work when you’re ready.
Line managers can be prepared to handle personal bereavement within their teams by becoming familiar with their organisation’s bereavement and compassionate leave policies.
If you are a health care professional, you may already have established relationships with your local hospice and, like St Luke’s, they will probably be more than happy to offer you or your teams advice on how to cope with personal grief when death and bereavement are part of your job.
For more information on death, dying and grief in the workplace visit Hospice UK’s Dying Matters Awareness Week
In the past few months, death has become a greater part of public life, with so many families sadly losing loved ones and with the media focus firmly on the impact of the COVID-19 pandemic. But are we getting better at talking more openly about the ‘taboo’ subject of death or do we still hold back because although we’re comfortable with it, we fear others aren’t?
We’re firmly behind the national annual Dying Matters Awareness Week campaign (11 – 17 May) to encourage more honest talk about death, dying and grief, recognising that this helps those affected feel listened to and understood.
To mark this year’s campaign – Dying to be Heard – national charity Hospice UK has revealed new findings from Savanta ComRes that show that 72% of those bereaved in the last five years would rather friends and colleagues said the wrong thing than nothing at all, and 62% say that being happy to listen was one of the top three most useful things someone did after they were bereaved.
Meanwhile, a recent local survey carried out on behalf of St Luke’s, found that just 24% of those polled said they felt ‘very comfortable’ talking about death.
With many people facing the unexpected death of loved ones due to COVID-19, Hospice UK is calling for people to take courage and speak to people about death and bereavement to support those in our society who are dying or grieving.
Tracey Bleakley, CEO of Hospice UK, said “What these findings show is just how important it is for us all to talk about death and grief, particularly when as a nation we are facing higher numbers of unexpected deaths as a result of COVID-19. These issues sadly have a taboo about them, which is unhealthy and can leave people suffering in silence. We owe it to each other to take part in these conversations. So many people are dying to be heard, and we all need to listen.”
In an additional new poll from Opinium on the public’s reaction to COVID-19, while 71% of people agree with the lockdown restrictions, nearly half (48%) said that not being able to see someone before they died or attend a funeral would make it harder to accept the reality of the death. This poll also found that 62% said that not being able to see a dying person before they died would cause a lasting sadness, and one in six (59%) said that they would want a celebration of the person’s life after the lockdown is lifted.
In addition, the survey found that more than 11 million people – 1 in 5 UK adults – have put in place advanced care plans (ACPs) in case they fall ill because of COVID-19, or plan to do so.
As part of our service, we encourage people to create an ACP, a personal statement of wishes that can ensure – as far as is practically possible – that their wishes are respected and acted upon should they be too ill to speak up for themselves in their last days. Having an ACP can bring increased peace of mind not just for the person concerned but for the loved ones around them, too, making a very stressful time that little bit easier.
We also provide emotional, practical and spiritual support for those whose loved one had links to our service before they died.
Jutta Widlake, Head of Social Care at St Luke’s, said: “As a society, we don’t discuss death openly, and because people are living longer most of us don’t experience the loss of someone close to us until we’re well into midlife. Death is a normal part of life though, and we shouldn’t feel held back from talking about it because we fear others might feel uncomfortable if we do.
“As the national survey results show, silence isn’t always golden because most bereaved people welcome friends’ and colleagues’ efforts to help, even if those people are afraid of saying the wrong thing. So, taking that step to express your support – and being there to listen – are among the most important things you can do.”
You can pledge to take part in a conversation about dying, death or grief, either initiating it or taking part if someone else starts it. An online pledge wall and other ways for people to share their pledges can be found here.
For more information www.dyingmatters.org or www.stlukes-hospice.org.uk/acp
