The Practicals: Getting Organised
This section of the website aims to clearly guide you through the processes, forms, and options related to end-of-life care. While this is not a medical website, providing these resources and explaining the steps involved can help you communicate more effectively, stay connected, and maintain dignity at the end of life
Advance Planning
This is a process to go through, where you consider important aspects some personal and some legal that may affect how you die.
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Reflecting on what matters most to you (quality of life, independence, comfort, beliefs, values
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Learning about the types of medical decisions that may arise at the end of life
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Choosing someone you trust to make decisions for you if you cannot (a substitute decision-maker / healthcare proxy)
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Writing down your wishes in formal documents
The two primary documents are:
-Advance planning document or quality of life statement (non-legal)
-Advance Directive/Living will - (legally binding England and Wales)
See below this really helpful video developed by the BBC and the Open University about having an end of life plan.
Photo credit: Tiana Aschenbrenner
Advance care plan/Quality of life
An effective quality of life statement typically includes:
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Definition of Personal Well-being: What constitutes an acceptable quality of life for the individual (e.g., ability to recognize family, ability to communicate, being free from pain).
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Preferred Place of Care/Death: Preferences for being cared for at home, in a hospice, care home, or hospital.
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Daily Routine and Comfort Preferences: Specific details on how they like to do things (e.g., preferring a bath over a shower, sleeping with a light on, wearing specific clothes).
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Values, Beliefs, and Culture: How religious, spiritual, or cultural beliefs should influence their care.
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Social and Emotional Support: Who they want to be involved in their care, who should be kept informed, and who should be involved in decision-making.
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Practical Matters: Concerns about pets, care of children/dependents, or specific environmental preferences.
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What to Avoid: Specific situations, environments, or interventions that the person finds unacceptable.
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Funeral or after-death wishes (sometimes included)
Examples:
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"I want to be able to listen to music and have my family visit."
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"It is important to me to be cared for at home and not in a hospital."
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"I am a strict vegetarian."
The Compassion in Dying Website is an incredible resource in this area and has a downloadable PDF
Photo credit: The Tilly Project End of Life Photography
Advance Directive/Living Will/Advance Decision to refuse treatment
Legally binding document (England and Wales) key components generally included are:
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Refusal of Specific Treatments: Clear instructions on medical interventions you do not wish to receive, such as cardiopulmonary resuscitation (CPR), ventilators, or antibiotics.
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Clinically Assisted Nutrition and Hydration: Directives regarding feeding tubes or IV fluids if you can no longer eat or drink.
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Scenarios for Application: Specific conditions under which the directive applies, such as dementia, brain injury, or terminal illness.
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End-of-Life Care Wishes: Preferences regarding palliative care, pain management, and location of care (e.g., at home vs. hospital).
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Appointment of a Proxy (Often Separate): Many regions use a separate Health Care Proxy or Lasting Power of Attorney for Health and Welfare to name someone to make decisions.
The video above talks through the option of to do not resuscitate which is a very specific part of the document. This order may seem scary and there has been considerable confusion about this measure in the past. It is worth understanding when this would be used and how it can help an individual at end of life have a dignified and peaceful death.
The Compassion in Dying Website is again an incredible resource in this area and has a downloadable PDF
Why advance planning matters?
Without advance planning, families and doctors often have to guess what you would have wanted during very stressful moments. This can lead to conflict, guilt, or care that does not match your values.
Advance care planning:
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Gives you control over future care
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Reduces stress for family members
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Helps healthcare teams respect your wishes
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Supports dignity at the end of life
When it is used:
Your plan is used if you are unconscious, seriously ill, living with advanced dementia, or otherwise unable to make decisions for yourself. Advance care planning is not a one-time task, it should be reviewed and updated as your health, circumstances, or wishes change.