Dying Matters - Being in a Good Place to Die

Dying Matters week this year is the week beginning the 10th May. The focus of the week this year is ‘being in a good place to die,’ Many of us focus on the quality of our lives but how we die and end our lives is equally important. Sarah Wheeler tells us more about the steps we’re taking in Powys to ensure that people living in our communities are in a good place to die.    

Sarah Wheeler - Macmillan Lead Nurse End of Life Care Planning

What brought you to work in the field of palliative care?

I have been a nurse for 34 years and enjoyed my career latterly in Birmingham working as a Colorectal Specialist Nurse in a hospital and community setting. Within this role I was often privileged to support patients and families at the end of their lives, developing a passion for end of life care. In 2005, my family and I decided to move to beautiful Powys and I joined PTHB team as a Macmillan Palliative Care Clinical Nurse Specialist and have enjoyed being part of a supportive rural community in Powys.

Tell us more about your role as Macmillan Lead Nurse for End of Life Care Planning with the PTHB?

My role is to work within national and local end of life guidance, to ensure best care and support in end of life care for all adults along with partners within Health, Social Care and Voluntary sector organisations. I also enable and empower health and social care staff to deliver best practice in end of life care, educating and training staff improve co-ordination of end of life care.

An important part of my role is to ensure that every adult in Powys has the opportunity to talk and share their future care wishes voluntarily with family, friends, and health & social care professionals.  We know it is important to help you and those people close to you to understand what you feel is important for your future care. This is known as Advance Care Planning (ACP) and ensures that your voice and opinions continue to be heard, even if you are unable to speak for yourself. ACP can help you live your life to the full with peace of mind that your future care wishes have been talked about and shared.

ACP Lauch 2019

Tell us more about Advance Care Planning and how it started ?

In 2019, as part of the Powys Specialist Palliative Care Team we launched the PTHB "My Life, My Wishes" Advance Care Plan documentation following extensive key stakeholder and public engagement.

“ACP is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future care”.

In Powys, this ensures honest conversations, informed choices, with the aim of involving family and carers to allow for seamless care provision at end of life or if you were unable to speak for yourself: What is ACP?

Are there particular issues which arise with end of life care in rural areas like Powys?

ACP in rural communities such as Powys face additional challenges, as our local residences are often far from hospitals and loved ones, making planning ahead especially important to ensure quality palliative and end of life care or clear decision making within a crisis conversation. Although these are often seen as difficult conversations, evidence suggests that ACP is more accessible and less threatening in rural areas when these conversations are held with local people who are a trusted and part of the community in Powys. Evidence also suggests that when loves ones are able to make wishes and preferences happen it can be very comforting and helps in loss and grief.

Bevan Commission exemplar

Do you work closely with any  other organisations or statutory services to provide support to people?

With these challenges in mind, I have now become a Bevan Commission Exemplar following completion of a project educating key partners in PTHB, Powys County Council and Powys Association of Voluntary Organisations (PAVO); whose members are now Powys ACP Champions, and have the knowledge, skills and confidence to support and advise on informal and formal ACP within their community of Powys. ACP opportunities arise through their roles, their established local community networks and their personal networks.

Through collaboration with health, social care and local voluntary organisations ACP champions empower and enable ACP in their communities in rural Powys, encouraging open conversation and using the PTHB My Life, My Wishes ACP document and Information guidance. www.pthb.nhs.wales/about-us/programmes/my-life-my-wishes

What are the benefits of My Life My Wishes?

To date we have educated 220 ACP Champions in a variety of health and social care and voluntary settings, and My Life, My Wishes ACP document continues to support open conversations, to write and share wishes in advance. We continue to support Powys health and social care professionals to respect future preferences, values and wishes that matter to the person in the community we care for.

What are your hopes for the future of palliative care in Powys?

Through my role, my hope is to continue to nurture and grow an ACP movement in Powys with a rolling programme of public awareness of ACP, utilising the support of the local Powys ACP champions and acknowledging them as a huge community asset. Awareness campaigns such as CompassionateCymru/Dying Matters Awareness week, Death Cafés and Departure Lounge will support breaking the taboo of talking about death and dying within local communities in Powys. When the Covid-19 crisis hit us in 2020 it changed the whole landscape of the death and dying conversation and brought serious illness conversations and ACP to the forefront of our community’s thoughts. 

What does being in a good place to die look like in Powys?

Dying Matters Awareness week 10^th – 16^th May 2021 focuses on the importance of being in a good place to die – we want people of all ages to be in good place physically, emotionally and with the right support in place – getting there means having important conversations, taking careful decisions, thinking, talking and planning for it.

Let’s grasp the opportunity to promote and support future care planning with community networks that make a difference at the heart of the community in Powys!

In a good place to die.

If you could change one thing about the way we approach death and dying what would it be?

If I could change one thing about the way we approach death and dying is that it would be normal for us all to have a future care and death plan in place, just as it is now the normal to have a birth plan in place.

ACP remains more effective when introduced to our whole community in Powys, even before a person becomes unwell, or unable to speak for themselves or if experiences an acute crisis. “I didn’t want that..”

I hope through open conversations about death & dying we can to unleash the concept of compassion, care and support within the local rural community for those with the greatest needs.

If you had one top tip, or piece of advice about being in a good place to die what would it be?

My tip is Advance/future Care Planning is for everyone and “it is never too late to talk about your future care wishes.”

www.pthb.nhs.wales/about-us/programmes/my-life-my-wishes

“it is never too late to talk about your future care wishes.”

Our thanks to Sarah for taking the time to let us know about the steps in place to support death and dying in Powys. If you'd like to find out more please contact Sarah Wheeler at the health board Sarah.J.Wheeler@wales.nhs.uk

To read more about bereavement support in Powys please see our PAVO Mental Health Blog Bereavement Support in Powys

 

 

 

 

 

 

 

It’s Time to Talk About Dying

what to do when someone dies? 

Last year we celebrated the ground-breaking  “My Life My Wishes,” a PTHB Palliative care initiative, focusing on those often difficult questions around death and dying, with the launch of the Powys Advanced Care Planning document. What has become clear as a result of this initiative is that there is a need for a dedicated approach to end of life and bereavement care. What is important to establish from the beginning is how support is co-ordinated and delivered. What do we do in Powys when someone dies?

SATH Swan Scheme

At the moment there isn’t a dedicated bereavement strategy in Powys, it’s a blank canvas with the opportunity to shape services and provision for our local Powys communities. To find out what bereavement services are offered in neighbouring Shropshire we visited the SwanScheme at Royal Shrewsbury Hospital.

.SWAN is an acronym for Signs Words Actions and Deeds.

SATH were early implementers of the SwanScheme, devised by Roy Lily and pioneered by Fiona Murphy in Manchester hospitals. The premise of the Swan Scheme is that “we have one chance to get end of life care right,” so we need to do it well.  In Shrewsbury there’s a dedicated bereavement suite based in the old mortuary viewing suite , opened in 2015, and two end of life care two bereavement rooms, with a special children’s room. It feels like you’re visiting someone’s living room with a welcoming, calm atmosphere. There are pictures on the walls, comfortable chairs with lots of thoughtful and sensitive considerations and attention to detail, such as mood lighting and CD players.

The end of life volunteer service began in 2017, with 23 current volunteers and plans to expand with a SWAN room on each ward. Every individual or family with an end of life care plan through the SWAN scheme receives a memory box containing several helpful items for the bereaved such as tissues, a small ribbon-tie soft bag for jewellery or a lock of hair and a swan bag for the bereaved’s possessions. What is particularly beneficial about these bags and boxes is that everyone at the hospital recognises the significance of the SWAN and takes this in to consideration.

The Rules

thinking outside of the box

An underlying premise of the SWAN scheme is that the rules are there are no rules. Rules can be broken and out-of-the-box thinking is encouraged and welcomed, for example flowers, a favourite food or drink and pets are all allowed, with special pet passports to allow access to the hospital, it’s the little things that can make an end of life experience more personal and less clinical, bringing moments of joy to the final moments of someone’s life.Time is also irrelevant when it comes to SWAN end of life care. It’s possible to share a final Christmas in June or a Mother’s Day in December. What is important is that the death is as personal as possible and as long as it’s safe and kind with no harm to anyone it’s OK. This approach encourages open and honest dialogues around death and dying. Demystifying the stigmas and taboos we cloak death in and making it more acceptable and approachable, making any fears and concerns easier to talk about.

Important Points

Conversations about death and dying are encouraged to be seen as ‘important,’ rather than ‘difficult,’ It’s one of the most significant conversations we’ll have about our life and how we choose to leave it so it’s important to be honest and open. It’s important to take in to consideration, where we want to die, who we want to be there, who is going to represent you if you’re unable to represent yourself. Kathryn Mannix talks about these important conversations in  her short but poignant You Tube Video, “ Dying is not as bad as youthink,” 

Powys Bereavement Launch

The visit to the SWAN scheme at SATH was particularly thought provoking and inspiring with lots to consider moving forward with a Powys Bereavement strategy. Planned to coincide with “Grief Awareness Week,” the Powys Bereavement Project was launched at the Metropole Hotel, Llandrindod on Tuesday 3^rd December The event was well attended with a mixture of statutory and third sector organisations. The launch opened with a video of Julia Samuels MBE of the “Good Grief Trust,” with the message that, “everything about grief and loss is chaotic and messy,” promoting the fact that there are no set rules and we really need to talk about grief, death and dying and bereavement.

Speakers

Several people shared their perspectives about grief and bereavement with the room. Becky Evans from Credu was the first person to address the room. Becky Shared a powerful Vlog with us from Powys young carer Emily Bleakley who cared for her mother during her illness and death from terminal bladder cancer last year. Emily’s story is shared in our PAVOMental Health Blog Becky’s key message to the group was that it’s important to help people with all types of grief and support people with caring during end of life, through to bereavement and beyond.

Sue Westley, chair of CRUSE Bereavement Care spoke next. CRUSE is a national organisation found throughout the UK and Northern Ireland. It’s reliant on volunteers and in Powys has an area co-ordinator based in Newtown. Sue informed us that approximately 600,000 people per year are bereaved. Most people have good social support networks. CRUSE is there for those people who don’t that don’t have that support . CRUSE offer one to one appointments at home or in a safe place, giving support and offering advice to help people in their grieving. They offer different types of support including pre-bereavement, major incident and dementia and also run workshops to support people who are bereaved. Sue highlighted the importance and value of talking, not internalising feelings. With 60 years of supporting people through grief and bereavement CRUSE have now delivered a powerful Manifesto for Bereaved People. They are also planning to recruit more volunteers this summer, if this is something you'd be interested in please contact them at powyscruse@cruse.org.uk

Marion Baker talked to us about the services provided by the BrackenTrust. Based in Llandrindod they offer support to people affected by cancer, their friends and family and carers, providing a range of activities and group support from gardening to singing to mindfulness and massage. They are currently in the process of standardising their bereavement service.

The Samaritans were represented by Alison Davies who described the services offered. All roles at the Samaritans are filled by volunteers, there are currently 80 members of staff in Powys, 40 shop workers and 40 listening volunteers. Their aim is for fewer people to take their own lives. They currently offer support by phone, e-mail and sms. There are always two volunteers and a leader on duty, employing SHUSH listening tips to provide a safe place where people can talk openly about their feelings and experiences.

The morning session ended with an open and honest, heartfelt message from Alison Edwards-Lewis, Palliative Care Secretary with the PTHB, which highlighted the need for a Powys Bereavement scheme to be established. Julie Rowles, Director of Workforce, Organisation Development & Support Services for PTHB thanked everyone and spoke movingly of her own personal experience of grief and loss.The Tenovus Voice Choir joined us for the final moments of the launch. Tenovus is a choir for people affected by cancer. It was set up 75 years ago and has gone from strength to strength in that time. There are 18 choirs in Wales and 2 in London with 1800 weekly singers. Tenovus provides support 365 days of the year and base their support on the fact that singing makes you feel better. Something we were able to experience first-hand as the Llanidloes Tenovus Choir joined us to sing Christmas carols.

Next Steps For Powys

The launch was a powerful first step towards implementing a Powys Bereavement Plan. There was music, cake, laughter and tears and a real sense of a united passion and commitment to supporting people in end of life care and bereavement. The palliative team are in the process of working on a project plan with these initial steps and intentions:

• We want to ensure that everyone who is bereaved in Powys has accessible, individualised and holistic support.
• We recognised the huge breadth of experience in terms of types of loss and grief reactions and that individuals may need very different things, at different times, across a large geographical area.
• We celebrated what support is already there which surprised many in the room, and agreed it needs a central directory for accessibility (with a search engine function, probably through infoengine)
• We explored how grief is totally natural process that does not need medicalising – but it needs to be normalised and supported within community contexts
• We recognised the support needed for professionals working with people who are grieving, and that education and easily accessible information is needed for everybody.
• We recognised that particular kinds of deaths and losses need particular support, for example, death by suicide, miscarriage, death of a child.
• We are committed to work together to radically improve bereavement services in Powys in the next year.

The words of Tiffany, choir leader with Tenovus, Llanidloes stay with me as we move forward with the bereavement project, “Grief is a build up of love with nowhere to go,” Hopefully by coming together and working out what good grief looks like in Powys, we’ll find healthy avenues and channels for the grief.