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Advance Care Planning

Helping you plan ahead for a time of failing health. Because we all deserve the opportunity to communicate what matters to us.

This page was last updated: November 12th, 2021

We want to support you to think about your wishes and preferences for the future. Writing down your preferences in an Advance Care Plan can help those around you to understand what matters to you.

What is Advance Care Planning?

Advance care planning encourages you to discuss and write down how you would like to be cared for and what you would like to happen if you are unable to communicate your wishes.

Having these discussions, or completing an advance care plan, is entirely voluntary. The only legally binding decision some people wish to make is an Advanced Decision to Refuse Treatment. This can be part of, or separate to, your Advance Care Plan.

And because your health, and your preferences, can change over time, any decisions that you make can be changed by you at any time in the future.

If you’d like a template for an advance care plan, or to discuss how to write one, please speak to the team looking after you at the hospital.

In life we plan for many things – birth, education, marriage and retirement – but we rarely plan for a time of failing health

It can be hard to imagine a time when we would lose our capacity to make decisions. But as the end of our life approaches, it’s not uncommon for people to find themselves in this situation. If this happens, there might be things that matter to you and that you would want those caring for you to know.

Discussing these issues ahead of time can feel difficult, but by doing as much as possible to plan ahead, this can give you the freedom to get on with life knowing that your wishes and preferences are known to others and safely documented.

Who can I talk to?

At the hospital there are senior nurses and doctors who can help you to start the conversation. You could also talk to your GP, community specialist nurse or matron. Your medical and nursing team will be able to help you with information that you might need to inform your choices such as:

  • A better understanding of any illness or condition you may have.
  • How this may affect you in the future, what may happen and what is uncertain.
  • Any treatments which may, or may not be helpful.
  • The role of future hospital care.

It’s important to discuss your wishes with someone who could speak for you if needed – someone who knows you well and that you can rely upon to best represent your views. This might be a family member, a friend or perhaps a professional with whom you are able to share your thoughts.

Understanding and planning for future care

Ahead of time it may help to talk about what you would want if you become less physically able. This might include:

  • Care that might be available to help you stay at home.
  • Care provided by nursing or residential homes.
  • Who you would like to be involved in your care.
  • Where you would like to be cared for at the end of your life.

We know from research that people are more likely to die in the location of their choice if they have made their preferences formally known to those around them ahead of time.

Personal wishes & preferences

These are the things which are personal to you as an individual. They may include anything that you feel is important to you and your family.

You might want to think about:

  • What is it that you value, that gives you pleasure or brings you comfort?
  • Are there daily habits which are important?
  • Do you have particular religious, spiritual or cultural beliefs?
  • Are there goals you have, perhaps a special trip, a birthday or anniversary?
  • Are there things that you really don’t like, or that you wouldn’t want to happen to you?
  • If you were to appoint someone to represent your views, who knows you well and that you can rely upon to do this?

Useful terms to discuss and understand

Advance Care Planning (ACP)

Describes the process of thinking ahead towards a time of failing health and end of life when you may be unable to communicate your views. This might contain simple statements about your wishes and preferences for care, often called the advance statement part of your advance care plan. It can also include documents such as an advance decision to refuse treatment (ADRT) or lasting power of attorney if you wish. By advance care planning and recording these wished, you decide what you believe would be important to you in the future and those around you will have a clearer understanding of what would matter to you at this time.

Advance Decision to Refuse Treatment (ADRT)

Records a decision that you have made to refuse life sustaining treatment such as cardio-pulmonary resuscitation or mechanical ventilation. An ADRT needs to specify the circumstances under which you would refuse treatment, and include the statement ‘even if life is at risk’ to ensure that you have understood fully the implications of your decision. It will need to be a written document that has been signed by you and an independent witness. And advance decision to refuse treatment was previously called a Living Will.

Best interest decisions

Refers to the process that those caring for you should undertake when making care decisions on your behalf. This is relevant if you are unable to make these decisions yourself. The medical team caring for you must consult with family and friends who are aware of your views in making decisions about your care. Advance care planning activity such as Advance Statements or Lasting Power of Attorney (LPA’s) are very helpful in understanding what your wishes might be if you cannot say so yourself.

Lasting Power of Attorney for Health and Welfare (LPA)

An appointed individual with the authority to speak on your behalf on issues specified by you. The lasting power of attorney is consulted if you lose the capacity to communicate your wishes. You can appoint a lasting power of attorney for health and welfare, for property and financial affairs, or both. In relation to your future care it is the lasting power of attorney for health and welfare that concerns the medical team overseeing your care.

Mental capacity

The ability of individuals to make and communicate decisions. Some people have this ability impaired by illnesses such as dementia or a sudden accident and may be unable to make a specific decision when they need to. To protect people in this situation the Mental Capacity Act (2005) provides a framework that all healthcare professionals have a duty to adhere to.

Treatment Escalation Plan (TEP)

An individualised plan initiated by your medical team in discussion with you. The TEP focuses on which treatments may or may not be helpful or effective and which, in some cases, can be burdensome in those whose health is failing, such as cardiopulmonary resuscitation.

Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)

If you are suffering from an advanced disease, approaching the end of your life and thought to be dying, your medical and nursing team will discuss a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) order with you. If your heart stops beating and you stop breathing in these circumstances cardiopulmonary resuscitation (CPR) is very unlikely to be successful. Resuscitation is a vigorous physical process to undergo, and can prevent you from achieving a peaceful and dignified death. In some instances this may prolong the process of dying and in some cases prolong or increase suffering.

Frequently asked questions

Do I have to have an advance care plan?

You don’t have to have an advance care plan, but it can be reassuring to know that you will be cared for in the way you would prefer if you become unable to make decisions or communicate your wishes. It can be also be reassuring for family and friends to know that they are making decisions that you would want.

Do I need to write my advance care plan down?

You can of course discuss your wishes and preferences with friends and family, who will be able to tell those caring for you. Having a written document to share with your medical and nursing team means they can all be confident that they are caring for you as you would wish, and speaking to those you have chosen to represent your views.

Who should I share my care plan with?

To make sure that full consideration is given to your advance care plan, you should share it with your local hospital, your GP and anyone you would like to represent your wishes.

Can I change my advance care plan?

Once you have written you advance care plan, you can add, update or revise the plan as you wish. If you do make any changes it is important to share these with anyone who has a copy of your plan.

Is my advance care plan legally binding?

An advance care plan is not legally binding. Your medical team must consult your advance care plan to shape and guide the decisions they make and the care that you receive in relation to your health needs. There will be times when they may be unable to fulfil your wishes, for example if you have expressed a preference for hospice care at the end of your life, but when the need arises a hospice bed is not available.

If there is a treatment that you feel confident you would not want to receive you might consider completing and advance decision to refuse treatment (ADRT).

What do I do if I am certain that I want to refuse treatments ahead of time?

If there is a treatment that you feel confident you would not want to receive you should consider completing and advance decision to refuse treatment (ADRT). An ADRT specifies a particular treatment that you would refuse in specified circumstances and is legally binding in the majority of circumstances.

Does my advance care plan need to contain an advance decision to refuse treatment?

Advance care plan is an umbrella term. You can decide what you would want to include. For some people it will be a simple statement of wishes and preferences, for others it may include an advance decision to refuse treatment (ADRT), a copy of their treatment escalation plan (TEP), a lasting power of attorney (LPA) or a will.

Do I need to appoint a lasting power of attorney?

Appointing an individual to speak on your behalf if you lose capacity is a very personal decision. The medical and nursing team caring for you should always take account of the views of family members and close friends when making ‘best interest’ decisions, but for some people, having a formal lasting power of attorney gives them reassurance that their representative must be consulted in the way they would be themselves if they were able.

Who should be my lasting power of attorney?

The person you appoint as your attorney must be over 18 years old, they can be your husband or wife, another relative, a friend or a professional, such as a solicitor. You can appoint more than one attorney. When choosing your attorney you should consider if they would want, or are able, to undertake this role, and how well you know and trust each other. The forms can be completed on the internet.

Where can I get an Advance Care plan?

You can write an advance care plan in any form that you would like, but many people prefer a ready-prepared document to guide them and provide prompts.

We have an advance care planning document available at the hospital that you can complete here or take home and complete in your own time. If you’d like a copy, please ask the team looking after you.

You’ll also find links below to a variety of advance care plan templates that you can either download or order.

Further information

Guy’s and St Thomas’ have a series of previously produced films which may be useful for:

  • Patients and carers who benefit from supporting information to understand conversations had with their care team
  • Patients who have discussed their preferences with their care team and would like supporting information to help them to explain their wishes to their family
  • Patients and carers who would like to plan ahead but do not know what to consider in their advance care plan
  • Healthcare professionals who may want to prepare for a conversation with a patient or carer

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