The World Health Organisation (WHO) states that palliative care is explicitly recognised under the human right to health. It should be provided through person centred and integrated health services that pay special attention to the specific needs and preferences of individuals.
What is Advance Care Planning?
ACP is a voluntary process of person centred discussion between an individual and their care providers about their preferences and priorities for their future care, while they have the mental capacity for meaningful conversation about these. The process, which is likely to involve several conversations over time, must have due consideration and respect for the person’s wishes and emotions at all times. As a result, the person should experience a greater sense of confidence, involvement and the opportunity to reflect and share what matters most to them. It should not be assumed that everyone wants to have ACP conversations when offered. Their wishes should be respected. If people decline, this can be sensitively revisited later.
How to have a conversation around Advance Care Planning
People don't like to talk about death. But talking about what kind of death you want can have many benefits.
What are the benefits?
When ACP is done well, people feel they have had the opportunity to plan for their future care. They feel more confident that their care and treatment will be focused on what matters most to them if, at a future point, they are unable to fully participate in decision making. This can give them a greater sense of control of their own lives. ACP benefits the patient, their family, carers, those important to them, and health and social care professionals. People are more likely to achieve their wishes for their end of life care when ACP is documented.
When can ACP be discussed?
The best time to approach a patient to offer an ACP discussion is when there is a change in their condition, if they approach a health professional with concerns, or if they identify a preference for their future care.
Who can open the discussion?
Anyone who has had training in ACP and who feels confident in their communication skills can have a conversation with a patient about their future care. A patient may choose you to have these important conversations because they feel they trust you and have built a relationship with you. From these conversations, which may happen over time, your patient may identify their preferred place of care (PPC) and their preferred place of death (PPD). Choices should be discussed such as home, hospice, care home or hospital.
Where is ACP documented?
- An Advance Statement (AS) to informally document preferred place of care and preferred place of death, goals for care and treatment, values, wishes, preferences and priorities, and may include nomination of a named spokesperson. It is important to include discussions about spirituality and religion; the following website has useful information openingthespiritualgate.net/app/index.html. If you wish to increase spiritual awareness and improve your confidence in assessing and meeting the spiritual and religious needs of patients and families please see Spiritual Gates – Opening the Spiritual Gate. ACPs should be shared with health and social care professional involved in a patient’s care.
Click here for Advance Statement form
Click here for easy read version of Advance Statement form
- An Advance Decision to Refuse Treatment (ADRT) to formally document a refusal of a specific treatment in specific circumstances. This must be documented, signed, witnessed and shared with health and social care professional involved in a patient’s care. Click here for ADRT form
- Nomination of a Lasting Power of Attorney (LPA) for health and welfare who is legally empowered to make decisions up to, or including, life sustaining treatment on behalf of the person if they do not have mental capacity at the time, depending on the level of authority granted by the person.
Make, register or end a lasting power of attorney ( LPA)
- Context specific treatment recommendations such as emergency care and treatment plans, treatment escalation plans, cardiopulmonary resuscitation decisions, etc.
North West Anticipatory Clinical Management Planning Guidance updated 2023
- Best Interest Decisions (BI) for a patient who lacks capacity to document what a person would have wanted from past discussions and what is known about their wishes and preferences, beliefs and values. Making Decisions in Someone’s Best Interest
How and why is ACP shared?
It is important that, with permission, ACPs and best interest decisions are shared with the health and social care professionals involved in the person’s care. There must be clarity about who the plan is shared with (eg GP, ambulance services, district nurses, hospitals, care homes, domiciliary care staff, specialist teams involved in the person’s care, out of hours services, and those important to the person who may be contacted in an emergency), why and how. Shared plans are accessed by clinicians so that clinical decisions are made in line with individual preferences as far as possible and within the Mental Capacity Act. Clinicians can share advance care planning information via the patients electronic records (EMIS) with professionals involved in their care. If the professionals involved in the patient's care have no access to EMIS (eg care homes/hospices/hospitals) please use the ACP Notification Form
National ACP documents and online tools:
- GOV.UK Make, register or end a lasting power of attorney ( LPA)
- Hospice UK Planning ahead: what matters most to you?
- Me-too.net my ADRT
- My Wishes available in alternative languages MyWishes: Free Will Writing, Digital Legacy, Advance Care Plan & Funeral Software
- End Of Life Care Planning | The Victoria And Stuart Project End of life care planning with people with learning disabilities.
National and regional ACP guidance and resources:
- Compassion in Dying Making decisions in someone's best interest
- Department of Health ACP Alternative Languages and Accessible Formats
- Dying Matters Advance Care Plan Resource for England & Wales
- NICE ng108 Decision-making and mental capacity (ACP & Best Interest)
- NICE qs13 EOLC for Adults Statement 2:Advance Care Planning
- NHS England Planning for your future care
- NHS England Universal Principles for Advance Care Planning (ACP)
- NHS England NW Coast PEOLC Clinical Network Advance Care Planning
- NHS England NW Coast PEOLC Clinical Network North West Anticipatory Clinical Management Planning Guidance updated 2023
- No Barriers Here - An innovative approach to advance care planning for people with learning disabilities - Dudley CVS