Advance Care Planning Support
As a result of our investigations during the pandemic IMOBP has decided to launch an ACP support program in the Chiltern area following a successful pilot with Chiltern U3A. After a presentation in April to 100 members of Chiltern U3A, 10 registered for support and 5 ACPs have been completed to date. We will be holding presentations to other groups in the area as well as through our links with our local hospice (The Hospice of St Francis) and Chiltern Compass. We are happy to give presentations by zoom to other organisations across the country. If you wish to avail yourself of this service, please read the information below and use either the template or proforma to prepare your ACP. If you need further support, please email contact@inmyownbedplease.com.

What is an Advance Care Plan?

An Advance Care Plan (ACP) is a document which outlines how you want your end-of-life (EOL) care to happen. It gives you control over that care when you do not have the ability (‘capacity’) to make decisions or communicate adequately.

There are two elements to an ACP – an Advance Decision to Refuse Treatment (ADRT) and an Advance Statement of Wishes (ASW).

An ADRT is a legally binding document once it is signed, dated and witnessed. It is about what you do NOT wish to happen and under what circumstances. For example you may not wish to be given cardio-pulmonary resuscitation if you have terminal cancer. It only applies to medical treatments and interventions. You cannot use it to say you refuse to be admitted to hospital or to a care home. It does not need to be signed by a doctor, though it may carry more weight if it is, and is only valid if you had capacity when you wrote it.

An ASW is an advisory document, but nonetheless, is very helpful for healthcare professionals (HCP) and carers at a time when you are unable to express your wishes for yourself. It may include information about where you would prefer to be cared for, who you would like to look after you and any religious convictions you may hold.

Once written and witnessed you should ask your GP to download it onto your Summary Care Record and keep at least two signed and witnessed copies at home. If you go into hospital you should take one with you but keep the other at home in case one gets lost in hospital. In some parts of the country you can ask for it to be put onto an electronic record that is available automatically to any HCP involved in your care, including first responders.

Be aware that you can adjust your ACP at any time to take account of changed circumstances and that it will only become active when you are not able to speak for yourself. The law doesn’t require an ACP to be written on any specific form, but if there is a form in frequent use in your area, that HPCs are familiar with, you might consider using that. If not, ensure your form is clear and concise.

You may wish to appoint a Lasting Power of Attorney for Health and Welfare. This is legally binding and appoints a person/s to make decisions on your behalf when you have lost capacity. It can be useful in situations that have not been anticipated in your ACP and you can instruct your attorney to act in accordance with your ACP. If you wish to lessen the burden of responsibility on the attorney you can exclude decisions about life-sustaining treatments.

Why everyone should have an Advance Care Plan

An Advance Care Plan (ACP) has two parts – an Advance Decision to Refuse Treatment (ADRT) and an Advance Statement of Wishes and Preferences (ASWP).The ADRT is a legal document if made while having mental capacity, witnessed, dated and satisfies certain other requirements. The ASWP is advisory only. An ACP only becomes active if you are without mental capacity and can be changed by you at any time.

Supportive evidence

90% of people die from a condition they are aware of in time to make a plan about how they would prefer to die. Of those, a third will die of cancer, a third of another chronic condition such as heart failure or dementia and a third of frailty due to old age. The remaining 10% die unexpectedly.

In the recent pandemic, at times 50% of deaths were due to Covid, with a time frame that didn’t allow for considering an ACP in depth. As a result, many died in hospital who might have preferred to die at home

Research shows that ACPs are associated with an increased likelihood of dying where preferred, and decreased levels of complicated grief in the bereaved.

Benefits of having a plan whilst you are well

  • Just the fact that you have an ACP tells clinical staff that you are the kind of person who has preferences and opinions about end-of-life care and are open to this kind of discussion.
  • Having an ACP will cover the 10% chance of not having time to write one.
  • In the event of another pandemic, it will be available.
  • Writing an ACP can be considered a dress rehearsal for a more specific ACP for a life-limiting illness. It is easier to modify an existing one than starting afresh.
  • Having had the discussions and thoughts necessary to write one, you will be able to stop worrying about the circumstances of your death. You have done all you can to ensure it will happen as you would wish and will mitigate the grief of your loved ones. You can then enjoy the rest of your life to the full.
  • Preparing an ACP may be more difficult when you are under the duress of a life-limiting diagnosis.
  • It will give you the opportunity to discuss with loved-ones whether they would prefer you to have made the decisions about end-of-life care or be responsible themselves for such decisions through a Lasting Power of Attorney for Health and Welfare.
  • Giving your relatives time to consider your wishes in advance will reduce the risk of disharmony between them at the time of your death.
  • When you are unwell you can refer clinicians to your ACP without having to think about it.

Questions to consider when starting an Advance Care Plan

If you are thinking of making a plan, please look at these ‘questions to be considered’ and ‘things to bear in mind’ which have been prepared by our ACP adviser – Sophie Thomas.

WHAT

What are you trying to achieve or avoid? Is there an incident or event that is informing your thoughts?

Are you happy just to state your general wishes and preferences? Or do you also want to make a legally-binding advance refusal of any specific treatment? (The latter requires specific wording)

What would constitute a ‘good’ outcome for you had a life-limiting illness?

WHEN

Do the wishes and decisions you are considering apply in all circumstances from now on? Or just ‘when you are dying’? (If it is the latter, you will need to define what you mean by this. It is not easy to define, and people’s definitions vary widely. For some people it might be at the point of a cancer diagnosis, for others it could be the point at which there is no further potentially curative treatment for heart disease, for others it means the last few days of life when death within a few days is clearly inevitable)

WHO

Who would you want to be consulted about decisions? Would they be happy with this responsibility? (This is particularly challenging if you wish to refuse potentially life-saving treatments – it is not easy for a family member to have to say they don’t want an intervention, especially if the medical team are not sympathetic to this view).

Is there anyone you particularly do NOT want to be put in this position (for example: an estranged partner or family member, or someone who would find it very distressing)?

Do you require your nominated person to act exactly in accordance with your stated wishes? Or do you want to give them some wriggle room for situations you might not have anticipated?

Do you want to give someone Lasting Power of Attorney for Health and Welfare? This would give them the power to make legally binding refusals if you lose mental capacity. (You can add a statement requiring them to act in accordance with your ACP)

Are there other people who you would like to be kept informed? (for example, is there a friend with a medical background or trusted health professional who could help to explain things to the person you have nominated to be consulted)? (If so, it would help to give advance consent for information sharing with this person)

Who would you want and not want to provide physical care? Some people are happy to have a grandson change their incontinence pads, others would like to avoid this at all costs.

If you would prefer to be looked after by family, is this feasible? (See point A below)
Do you have any preferences about paid carers? (eg: sex, languages spoken, a specific care agency)

WHERE

Where would you prefer to be cared for? This needs to be an informed preference, so find out what support would be available for you at home. Is there a Hospice at Home service? What can they offer? What do the NHS and social services provide?

What would you sacrifice to be at home? Some treatments that might prolong your life a little with minimal discomfort (eg: blood transfusion, intravenous antibiotics) are often not always available at home.

What would be your second choice? Again – this needs to be an informed choice. Is there a hospice in your area? Care homes consistently score well on end-of-life care, and some are excellent. It might be worth finding out a little more about those local to you – especially if you do not have a potential family carer.

THINGS TO KEEP IN MIND

If someone is looking at your ACP to inform a decision, the situation is likely to be grave. Your ACP is only applicable if you have lost mental capacity for the decision required. This would be a situation where you were either seriously cognitively impaired (for example: through dementia or brain injury), or so physically disabled that you could not communicate at all.

Plan for the unexpected. For example: people with a cancer diagnosis also have accidents, strokes and heart attacks, so you need to think beyond current circumstances.

It is very important to be clear about the circumstances in which your wishes apply. Very few people would want CPR in the final weeks of advanced cancer, but most would want help summoned if they choked on a peanut when they were otherwise in good health.

You don’t have to agonise over details. Some people want to include exhaustive lists of specific treatments and circumstances. Others are content to make general statements (‘I wish to avoid a prolonged period of physical dependency’, ‘I would like all reasonable efforts to be made to keep me at home’, ‘I do not want treatments that are aimed primarily at extending life’, ‘I would accept any treatment that might keep me pain free and comfortable’).

ACP template and proforma

We have developed an ACP template which can be edited to suit your situation and preferences. Please be aware that the entries in ‘Statement of Wishes’ are not all compatible and cannot all be left in place. Alternatively you can use the blank ACP proforma as a starting point.

If you need any help please contact us at contact@inmyownbedplease.com. We are happy to review completed forms. Please remember to register your form with your GP practice and keep two signed copies at home – one to go into hospital if required and the other to be accessible to emergency responders.