2-6 May is Dying Matters Awareness Week – a reminder that having conversations about dying is often not as hard as you might think. Building on last year’s message of ‘being in a good place’ to die, this year our End of Life and Community Specialist Palliative Care Teams are promoting the importance of Advanced Care Planning (ACP).
ACP focuses on all the elements that can help to ensure a peaceful, dignified and caring scenario for the individual and their family when the time comes.
The teams have shared their key pieces of ACP advice, from writing a will to discussing your favourite music with your family. Let’s hear from the team, with the below video, quotes and advice:
Sue Croft, Clinical Nurse Specialist – talking about your preferred place of care (PPC) with family
It’s an ongoing conversation that helps you to think about where you want to be cared for should you become very unwell and likely to die. It is very important for you and those closest to you because conversations can help you to think about how you could all manage, what help and/or equipment you may need to make your PPC possible and as safe as possible, as well as helping you to know who to ask for help and support to organise these things.
Having these conversations early may relieve some worry about these decisions, help everyone to know what is expected of them and if they are able to support in the way you hope. This can also provide an important opportunity for expression of any worries or concerns anyone has, to make sure of appropriate support and help those caring for you to know that they are doing the right thing, as best they can.
It is also important to keep talking in case your situation changes and this alters your PPC or what is possible and needed.
Teresa Smith, Clinical Nurse Specialist
I made a will for peace of mind that my wishes will be respected. It stops my children worrying about my financial and personal wishes. All is clearly written down for them. No one should just wait until they are ill, thoughts for a will must be priority as no one can predict the future. No family wants to deal with Probate. Remember: ‘Where there’s a will there’s a way.’
Sheila Nugent, Macmillan Clinical Nurse Specialist in Palliative Care
The reason I made a will was to give me peace of mind that my wishes will be respected after I die and my loved ones will be protected. A will lets me decide what happens to my money, property and possessions after my death and can also make sure I do not pay more inheritance tax than I need to and leave a donation to my chosen charity.
Karen Ainscough, MDT Coordinator for Community Specialist Palliative Care & EOL Service
No one is guaranteed good health indefinitely. Whether it’s an underlying health condition, sudden serious illness an accident or something else. It’s a difficult time and having a plan in place helps people feel comfortable and less anxious about the possibility.
Maddie O’Loughin, Social Worker
It’s good to make plans and talk. Death inevitably evokes feelings and memories, often emotional with a sense of loss for those left. This year we have also seen many tragic Covid-19 deaths in very restricted circumstances.
Dying Matters says ‘There is no right or wrong place to die; it will be different for everyone. But it is important for families to think about it, to talk about it and to plan for it. We want people of all ages to be in a good place when they die – physically, emotionally and with the right care in place. Make sure that you and your loved ones are in a good place to die.’
Key things to thing about include:
- Making decisions about treatment and advance care planning
- Your rights at work
- Concerns about dying alone
- Choosing to refuse treatment
- Writing a will
- Organ donation
How can we help as professionals?
- Creative Conversations – we have the opportunity to listen
- Don’t shut it down – people have the right to be heard
- The right experience and the right forum – make sure that conversations happen in a way that is appropriate, well thought through.
- Give people the information they need – we should be asking what people want in death as part of care planning
- What is the most important thing? – what the person wants.
What’s your story? As you read this your memory may be actively remembering a death. Mine is. This is an opportunity for you to talk to someone you trust about death and dying.
Charlotte Botes, Community Specialist Palliative Care Manager
A Lasting Power of Attorney (LPA) is important because it is a legal document that allows you to choose someone you trust to make decisions on your behalf, if something happens and you are unable to make decisions for yourself. An LPA covers decisions about your health and care or financial affairs. Setting up an LPA up allows you to plan for the future, protect you and your family members financially and reduce family conflict by clearly stating your wishes regarding your health and finances.
Liam Pell, Clinical Nurse Specialist, Palliative Care Team
DNACPR stands for Do Not Attempt Cardiopulmonary Resuscitation and there are many different scenarios when a DNACPR decision may be discussed.
The decision to have DNACPR will be discussed with your health professional, this can also include family members, completing DNACPR Form will be undertaken by your Doctor either in community or hospital setting.
Having a DNACPR form on your medical records does not stop you receiving any other treatment for reversible causes, this will be discussed with your health professional, an example of this would be antibiotics for chest infection.
Danielle Kazimi, End of Life (EOl) Care Team
Emergency Health Care Plans (EHCP)
This is a fantastic document which aims to keep out patient’ comfortable at home and avoid any unnecessary hospital admissions. Ensuring patients are aware that they can still have treatment and be treated actively in their own home/care home, without going into hospital can sometimes be the difference between a good or bad death.
We always aim for a good death with patient wishes, preferences and preferred place of care adhered too.
Having our wishes known early helps enable us to prepared with enough notice.
Advanced Care Planning (ACP)
Since I started working in EOL care I have recognised how important it is to have my wishes and preferences known, being a single parent I want to ensure my son and dog are cared for should I die. With this is mind I have an ACP on my desktop which I have told my family should anything suddenly happen to me, ask my colleagues to access my work laptop and all the information they need will be on there, for example:
- If I want to be buried or cremated
- Where I want my son and dog to live
- My passwords for my emails and bank card etc
Having this written down will help my family worry less about some difficult decisions they have to make and concentrate on themselves and their grieving process.
David Woods, Clinical Nurse Specialist
People can put off making a will as they consider it to be tempting fate. We often procrastinate about making what is clearly an important and life enhancing decision about the future for both yourself and all those close to you whilst we deliberate how to begin a thing. It grows too late to begin it.
Liz Banks, ISPCT
The most incredible funeral I have ever attended was of a wonderful artistic friend. In her final weeks she took all her family whale watching in the US. The family painted the white coffin with scenes of Hilbre Island. A jazz band dressed in tartan escorted the coffin to the tune of the New Orleans funeral march and they played during the funeral. It was such a happy, uplifting and memorable day.
Rachael Lambe, End of Life Facilitator Support Nurse
Preferred place of death
Research by Dying Matters found that around 70% of people want to die at home, however if we look at the latest statistics published by the Office for Health Improvement and Disparities this showed that only 27.4% of deaths on the Wirral in 2020 were in their own home. Knowing our patients preferred place of death is so important. By knowing where our patients want to die, we can put plans in place to facilitate a “good death” in line with their wishes and preferences for their care, in their preferred location. This might require liaising with the wider MDT and completing an advance statement, or completing Planning for Your Future Care document. Or might require more formal documentation to be in place such as Emergency Health Care Plans or advance decision to refuse treatment (ADRT). Sending handover forms to the End of Life Care Team is also really important, as this then updates the Wirral End of Life Register with important information (such as your patient’s preferred place of care or preferred place of death) and shares this important information with other professionals involved in their care.
Religious and spiritual wishes
Religion and spirituality is such an important aspect to consider when someone is approaching the end of their life and when they are in the dying phase. Speaking with your patients about their religious and spiritual needs and wishes in advance and recording these on your Patient and Care Assessment and in the Planning for your Future Care document makes sure their spiritual and religious wishes for their end of life care is known, so that we can ensure these needs are met when they are in the dying phase. There are resources available to support you with meeting your patients’ religious needs, such as the Religious Needs Resource by the Cheshire & Merseyside Palliative & End of Life Care Network which can be accessed on the following link: https://www.openingthespiritualgate.net/app/index.html