- Choice in death is as important as choice in life.
- Health and social care professionals are in a unique position to help care home residents plan their future and end of life care.
- Engaging with advance care planning early is an important part of giving someone control over their future care and medical treatment while they have capacity to make informed choices.
- Advance care planning provides the foundations on which to build person-centred, individualised end of life care.
- Advance care planning empowers patients/service users and informs care givers.
- Advance care planning shows a commitment to good end of life care.
- NICE (National Institute for Health and Care Excellence) provides guidance on advance care planning for registered managers of care homes.
All too often, planning for the end of life is left too late, or doesn't happen at all. When it does happen, it is invariably at a time when people are sick, not able to express their wishes or find themselves in a crisis situation. Thinking about and engaging in advanced care planning early is an important part of giving someone who no longer has capacity some control over their care. Giving someone the same choices in dying as they have in living is a fundamental part of holistic health and social and nursing care.
When advance care planning doesn’t happen, it may be because care givers have difficulty in broaching what are seen as difficult and sensitive subjects. It may be because of lack of knowledge about how to begin these conversations. It may be due to lack of recognition of the importance of this area of care, or it may be down to lack of appropriate documentation or resources to facilitate it.
Advance care plans
Living in a care setting or receiving care at home is usually the result of illness or injury. Receiving regular medical treatment or hospital care is frequently a feature of this stage of someone’s life. It is likely that many conversations around current health and care have previously taken place. Yet there remains a nervousness among health and social care professionals about taking these conversations a step further and discussing end of life care and death.
Creating an advance care plan demonstrates a proactive approach to care. It offers the opportunity for shared conversations and decision-making between individuals, family and carers.
Of those people with cancer, over 75% will have thought about the fact that they may die, but only around 8% will have spoken with their care team about this (Macmillan Cancer Support). If this is the case for cancer, it is likely to be the case for others living with other chronic health conditions.
Advance decisions to refuse treatment (ADRTs)
These are decisions about refusing specific types of treatment in the future. This might be something like ventilation or admission to an intensive care unit in particular situations. This type of conversation should be had with a medical professional. An ADRT must be documented, signed and witnessed.
Someone is deemed to be lacking mental capacity when they are no longer able to weigh up information and understand why a decision needs to be made and the likely outcome of the decision.
Lasting Power of Attorney (LPA)
This is a way of giving someone legal authority to make decisions on your behalf if you no longer have the capacity to do so. LPAs can be appointed for both health and care and financial decisions.
Having an advance care planning conversation
It is never too early to start a conversation about future care.
Don’t be afraid of upsetting someone. Most people do want to talk about the future. Even if they don’t right now, you have shown yourself to be approachable should they change their mind in the future.
Some people may allude to their failing health or increased dependence. Recognise cues, and be prepared to take the conversation further.
Start conversations by asking about priorities for the future, current concerns or thoughts that someone may have about how they would want to be cared for when they become less well.
During the conversation, consider discussing the person’s preferred place of care and death, e.g. care home/nursing home, hospital or hospice; the circumstances in which someone might want a hospital admission (this will be specific to their condition or illness); who they want to be involved in their care; and any spiritual or religious support they may want.
Although the decision to resuscitate is ultimately a medical decision, it is entirely appropriate and indeed good practice to include it in advance care planning discussions.
Advance care planning is not just one conversation; it is a series of conversations, so don’t worry if you don’t cover everything immediately.
Be prepared to guide the conversation, but ultimately listen. Remember, an advance care plan is a patient-centred plan.
Be open to people’s fears and concerns.Don’t be tempted to be offer false reassurance and hope even if it is well intentioned. If someone has been kind and brave enough to have an open and honest conversation with you, it is your responsibility to be honest back.
Documenting advance care plans
There are multiple ways of documenting advance care plans. Many organisations and institutions will have developed their own.
Other ways of documenting are on electronic shared record systems such as EPaCCS (electronic palliative care co-ordination systems), CMC (co-ordinate my care) or other GP-held systems. It is important to remember an advance care plan should be patient held and whatever form it is in, a copy should be available to the patient.
Good advance care planning empowers patients. It also ensures care homes have robust plans and reduces stress when someone becomes ill and is unable to make decisions for themselves.
- Advance care planning. A quick guide for Registered Managers of care homes and home care services, NICE: https://tinyurl.com/NICEACP
- My future wishes: Advance care planning for people with dementia in all care settings, NHS England, April 2018: https://tinyurl.com/NHSEACPlanning
- Thinking about end of life care. Finding support and getting your affairs in order, Age UK, May 2018: https://tinyurl.com/AUKEndofLife
- Primary Care 10 Top Tips: Advance care planning, Macmillan Cancer Support, August 2018: https://tinyurl.com/w4l96nn
Use the following item in the Toolkit to help you put the ideas in this article into practice:
About the author
Angela Vincent is a pallative care nurse.