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End of Life Doula

My Role:

 

  • As an End of Life Doula in training I offer emotional and practical support to individuals nearing the end of their life.

  • My aim is to support them not only in their final moments, but throughout the entire process.

  • My commitment is to ensure that each person's needs are met with care, warmth and empathy.

  • I am dedicated to sharing knowledge, providing guidance and empowering individuals to make decisions reflecting their unique wishes so that these can be respected and honoured after they have gone

  • With a background in holistic therapy I have embarked on a gradual journey to embrace the role, skills and experience needed to provide authentic and compassionate companionship for those who are nearing the end of their life.

  • I believe that everyone has a right to live well up until the moment they die.

WHAT IS ACP AND WHY SHOULD WE BE THINKING ABOUT IT?

 

  • Advance Care Planning (ACP) is an umbrella term used to describe a series of documents and forms, empowering you to make thoughtful and personal decisions about what you do and don't want in future healthcare

  • They not only encompass medical, legal and financial matters but also practical, cultural and emotional needs too.

  • Whilst it may seem a daunting task it can also be incredibly empowering and a deeply personal journey into discovering, expressing and voicing what is important to you in the final months, weeks, days and hours of your life.

  • It ensures that your wishes and values are respected even in times of uncertainty or incapacity - ultimately promoting dignity, autonomy, and peace of mind for yourself and you’re your loved ones.

Recently there has been a big campaign to get people talking about care at the end of life so awareness is increased and choices can be made. 

 

The NHS has created ReSPECT  - which stands for 'Recommended Summary Plan for Emergency Care and Treatment.  This is a great resource to start the ACP journey. 

 

So let’s break it down into bitesize chunks to really understand what each document is for...

Statement of Wishes and Preferences:

 

  • This is an opportunity to record your preferences and desires regarding medical care and end-of-life decisions in the event that you lose capacity to communicate your wishes.

  • Whilst it is not legally binding it can provide guidance to healthcare providers and close family members.

  • It is your chance to write down (sign and date) exactly what matters to you:

  • This can be anything from:

    • Personal beliefs, values

    • Your spiritual care

    • Any physical comfort and needs

    • Emotional support

    • The people that are important to you

    • Goals and legacy before you die

    • Care of your body after death

ADRT (formerly known as a Living Will or Advance Directive)

 

  • The Advance Decision to Refuse Treatment form is where you can express your wishes regarding medical treatment in case you lose the capacity to make decisions.

  • It ensures your preferences are respected and unwanted interventions are avoided even if you cannot communicate them directly.

  • It allows you to specify exactly what life sustaining treatments you do not wish to receive- you can tailor make it specifically to your wishes.

  • You must acknowledge in your statement that the refusal of treatment applies even if your life is at risk or shortened as a result of your wishes.

  • It is legally binding meaning your healthcare and medical team must follow your written instructions.

  • It needs to be signed by a witness (this can be a close family member or friend) and given to your loved ones, GP and local hospital

  • You can review it over time ensuring it remains reflective of your current preferences.

DNACPR

  • Do Not Attempt Cardiopulmonary Resuscitation is a medical document that specifies your wishes not to receive CPR in the event of cardiac or respiratory arrest.

  • It can be obtained from your local GP and must to be filled out with a healthcare professional.

  • It informs your medical team what your preference is regarding CPR in the event of an emergency,

  • For DNACPR to be legally binding you need to ensure that you have stipulated your refusal of CPR in your ADRT.

LPA

  • LPA stands for Lasting Power of Attorney

  • This is when you appoint someone who you trust to make decisions on your behalf should you lose mental capacity and become unable to do so yourself.

  • You can appoint an LPA for Finances and property.

  • And an LPA for Health and Welfare Care.

  • It costs £82 per LPA and they have to be registered with the Office of the Public Guardian (otherwise your LPA will not be valid).

  • It can take a few weeks so it is a good idea to get the process started as soon as you feel ready.

WHAT NEEDS TO HAPPEN FOLLOWING THE DEATH OF A LOVED ONE:

 

Initially nothing- there is a tendency to think we have to rush straight into action, telephoning and notifying people and missing out on this unique liminal space. This sacred time to be with your loved one, to hold them and say goodbye  can really help begin the grieving process.

CONTACT THE GP:

  • When you are ready you will need to contact the local doctor to confirm the death. 

  • They will issue you with a Medical Certificate of Cause of Death (MCCD).

 

REGISTER THE DEATH:

  • You then have up to 5 days to register the death at the local registry office (this is usually done by a relative but can be done by someone present at the death.

  • You will need to take the signed MCCD form and if possible the deceased’s NHS number , passport or birth certificate along with you.

 

THE LOCAL REGISTRAR WILL THEN GIVE YOU:

  • A GREEN FORM- this is a mandatory certificate needed for the burial/cremation. (It needs to wired electronically or given directly to the funeral director of your choice).

  • A Death certificate (you can purchase more copies which can be useful for notifying banks, insurance, utility companies and other services).

  • A unique reference number which can be used for Tell Us Once. (This is a free service provided by the UK government that allows the individual to inform multiple government departments and local councils about the death of a loved one in one easy step).

NOW THAT YOU HAVE THE NECESSARY DOCUMENTS YOU CAN BEGIN FUNERAL PROCEEDINGS.

FUNERAL WISHES:

 

  • Discussing arrangements for the end of one’s life can be extremely overwhelming and challenging, not only for yourself but family members too.

  • I believe initiating these conversations early on gives you the time and space to explore , express and communicate what really matters to you.

  • With the right support and guidance it can be a tender and gentle process.

  • Having a framework for your loved ones to follow creates a gentle holding and clarity during raw and emotionally challenging times, allowing them an opportunity to honour your wishes.

  • Despite some legal requirements and environmental considerations surrounding the disposal of a loved one’s body in the UK, the process can still remain deeply personal, reflecting individual beliefs and cultural traditions.

Options available for Burials and cremations:

GREEN FUNERALS:

  • Eco-Friendly funerals prioritise environmentally sustainable practices, such as using biodegradable coffins or shrouds made from natural materials like bamboo, wicker, or recycled cardboard. (These materials decompose more quickly and have minimal impact on the environment compared to traditional coffins made of metal or hardwood).

  • Green funerals take place in designated natural burial grounds or woodland cemeteries which are carefully managed to minimise disruption to the surrounding ecosystem.

  • Eco friendly options support conservation efforts by choosing burial sites that contribute to the restoration of natural habitats, such as forest areas or meadows.

Below are a couple of  links for ‘greener options’ to give you an idea of what is on offer in the local area:

 

DIY FUNERALS:

  • Contrary to what many people believe you do not have to outsource everything into the hands of experts when someone dies.

  • The Law states a body must be buried or cremated in a legally approved way- everything else is up to you- funerals are optional and not legally required.

  • This means that you can decide what parts, if any you would like support with.

  • For example you may wish to keep the body at home for a couple of days whilst you wash and care for it with or without the help of a local undertaker.  Or you might want to have the body taken to a local funeral directors where they can care for your loved one until you are ready to have the funeral. Others decide to have a direct cremation.

  • Whether you want family members to take on full or partial responsibility after death there are many amazing resources to help you decide.

  • There is so much scope for individualism at the end of a life so exploring what matters to you and talking to loved ones about what you want  ensures that your preferences can be respected.

 

The following resources are free and provide excellent practical advice about doing it your way:

The Natural Death Centre (NDC), phone 08712882098

CONVENTIONAL PRACTICES:

For many, entrusting funeral arrangements to a reputable and professional undertaker can offer a profound sense of reassurance amid the emotional challenges of such a difficult time. Here are a few things to consider:

  • Reputation and Experience: Choose a funeral company with a solid reputation for professionalism, empathy, and quality service. Look for established firms with years of experience in the industry and positive reviews from previous clients. 

  • Personalized Services: Seek a funeral company that offers a range of options to suit your loved one's wishes and your family's needs. From traditional ceremonies to alternative arrangements, ensure the company can accommodate your preferences with compassion and flexibility.

  • Transparency and Pricing: Select a funeral company that provides transparent pricing and clear communication about all services offered. Avoid firms that pressure you into purchasing unnecessary extras or fail to disclose costs upfront, opting instead for those that prioritize honesty and integrity in their pricing policies.

  • Support and Guidance: Opt for a funeral company that offers compassionate support and guidance throughout the entire process, from initial arrangements to post-funeral assistance. Look for professionals who listen attentively to your concerns, provide helpful information and guide you with sensitivity and understanding.

Useful Books:

Cowling, Charles. (2010). The Good Funeral Guide. Bloomsbury Press. London, United Kingdom.

Fersko-Weiss, Henry. (2017). Caring for the Dying. Orion Spring. London, United Kingdom.

Hennezel, Marie de. (1995). Seize the Day: How the Dying Teach Us to Live. Macmillan. United Kingdom.

Kellehear, Allan. (2014). The Inner Life of the Dying Person. Columbia University Press. New York, USA.

Mannix, Kathryn. (2017). With The End in Mind. William Collins. London, United Kingdom.

Mannix, Kathryn. (2021). Listen. William Collins. London, United Kingdom.

Yalom, Irvin D. (2011). Staring at the Sun: Overcoming the Dread of Death. Piatkus. London, United Kingdom.

Useful websites:

 

Support:

https://eol-doula.uk/

https://www.england.nhs.uk/eolc/

https://www.hospiceuk.org/our-campaigns/dying-matters/dying-matters-resources

Local hospices:

https://www.pth.org.uk/our-care/

https://www.cancerresearchuk.org/about-cancer/coping/dying-with-cancer

https://www.mariecurie.org.uk/

 

Local Resources:

https://farewill.com/

https://www.griefencounter.org.uk/

https://hook.gov.uk/bereavement-support-services-and-friendship-buddies/

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