‘I am leery of suggesting the idea that endings are controllable. No one ever really has control. Physics and biology and accident ultimately have their way in our lives. But the point is that we are not helpless either. Courage is the strength to recognise both realities.’
(Dr Atul Gawande, Being Mortal)
There may be times in your life when you think about the consequences of becoming seriously ill and even the possibility of dying. Or perhaps you are more concerned about an elderly parent or friend whose health is deteriorating. If you become unable to make decisions for yourself – something that can happen to any of us at any time – practical measures can be taken beforehand to officially set in place your wishes for when you are in a life-challenging situation and no longer able to communicate them.
Being prepared for situations in which we no longer have capacity to communicate our wishes around our healthcare is very much the rationale behind the UK organisation Compassion in Dying. We were very fortunate to have Usha Grieve from this organisation give a presentation at our workshop ‘Mind Your Own Business.’ In the short video clip below (filmed at our workshop) she defines the crucial term, ‘capacity,’ and explains some of the implications if we lose it through injury involving loss of consciousness or illnesses such as strokes or dementia.
‘Capacity’ is the ability to make decisions for yourself about a particular matter. ‘Having capacity’ means being able to understand and retain information about the decision, understanding the consequences of any choice you make, taking that information into account, and being able to communicate your wishes.
Be informed and be prepared
Our fear of death can mean we are reluctant to acknowledge that this is an event we will all need to face at some time. Yet, unless we do we cannot be certain that we will have any say over the health treatments we might receive.
Here are some questions you might like to consider:
- Are you aware of the various types of end-of life treatment that may be offered to you?
- Have you thought about how you would like to be cared for in your final days – and have you told anyone your wishes?
- Do you know what your parents’ or partner’s wishes are regarding their end-of-life care?
- Is their doctor aware of what their wishes might be?
For instance, are you aware of:
- What rights you have to make decisions about your medical treatment and care?
- How decisions about your care are made if you are unable to communicate?
- Whether you can make decisions on behalf of family and friends?
- How you can ensure your wishes about treatment and care are respected?
Here are some statistics from Compassion in Dying’s excellent website:
Did You Know?
70% Of the Public Want Little or No Intervention at the End of Life
53% Wrongly Believe Family Members Have the Right to Make Healthcare Decisions on Behalf of a Loved One
82% Would Want to be in Control of Life-prolonging Medical Treatments Should They Lose Mental Capacity
4% Have Made Their Treatment Wishes Clear in Advance Decision
There are legally binding ways that enable us to state what our wishes are – including what treatments we do not want. Chief among these processes is The Advance Decision (aka Advance Directive or Living Will) and the Lasting Power of Attorney for Health & Welfare.
The Advance Decision to Refuse Treatment allows you to refuse treatment in advance of a time when you don’t have the capacity to make a decision for yourself. Executing an Advance Decision is free, but requires some forethought and understanding of terms such as Life Sustaining Procedures, Provision of Nourishment or Hydration, State of Persistent Unconsciousness, and/or Terminal Condition.
The Compassion in Dying website gives clear guidance* on the following:
- What’s an Advance Decision used for?
- How do I make an Advance Decision?
- How will people know about my Advance Decision?
- Is my Advance Decision legally binding?
- Do I need an Advance Decision if I already have a Living Will?
- When should I review and update my Advance Decision?
- Do I need to talk to my doctor about my Advance Decision?
- What to do if there’s a disagreement about an Advance Decision?
*If you prefer talking to someone, call the number on the site. Someone is there to respond to your personal concerns.
An Advance Decision empowers individuals to develop and map out their personal recovery and crisis responses. Whether you are a 22-year old and have been in a car accident or are an elderly person at the end of life, completing an Advance Decision before you need one can help your medical care providers act in accordance with your wishes. It also lets your family know that what is being done follows those wishes. One reassuring feature of an Advance Decision is that if your ideas change about the care you want to receive, you can change it easily. An Advance Decision only comes into effect if you cannot make a decision for yourself, or cannot communicate. If you have capacity you will still be able to make your own decisions.
The Mental Capacity Act (2005) (MCA) made Advance Decisions legally binding. This means that as long as an Advance Decision is ‘valid’ and ‘applicable’ then any refusal of treatment within it is legally binding in England and Wales.
An Advance Decision is free to create, does not require a solicitor but needs to be signed and witnessed by at least one other person.
Lasting Power of Attorney for Health & Welfare
In an Advance Decision it is only the refusal of medical treatment that is legally binding and Advance Decisions are only applicable to the specific treatments and circumstances you choose to detail within it. It will not apply if you find yourself in circumstances you did not envisage at the time of writing. You can appoint a friend or family member as your attorney.
A Lasting Power of Attorney is more flexible because it applies to a wider range of healthcare situations, whether or not you specifically envisaged them at the time of appointing your Attorney. Should you lose the ability to make or communicate decisions for yourself, your Attorney will be able to make any health and welfare decision on your behalf, for example:
- deciding where you live and how you are cared for
- your diet and what you wear
- decisions about life-sustaining treatment if you give them that power
The Compassion in Dying website covers issues such as:
- What decisions can my attorney make under a LPA for Health and Welfare?
- Making a LPA for Health and Welfare
- Registering a LPA for Health and Welfare
- What rights does an attorney have under a LPA for Health and Welfare?
An LPA for Health & Welfare does not require the use of a solicitor (though you may choose to use one if you wish) and needs to be applied for from the Office of Public Guardian. You can use their online tool to create the document which you then print off, sign, witness and send to be registered. The process takes up to 10 weeks and currently costs £110 (and is free of charge for pensioners).
A similar process and fee is required for the Lasting Power of Attorney for Property and Finance. LPA’s cannot be amended once registered – any changes would require a new LPA to be created.
For a free guide in end-of-life planning published by Compassion in Dying, click here
Advance Decision vs Lasting Power of Attorney Health & Welfare
Considerations if you wish to have both documents and want to know which should be created first.
MISS HART’S STORY from Compassion in Dying website
Miss Hart appointed her brother, George, to be her Attorney for Health and Welfare. A few weeks later she also made an Advance Decision to refuse resuscitation if she had a heart attack, as she was worried that George would not be able to go through with making this decision for her. If she becomes ill in the future, the doctor will follow George’s decisions in almost all circumstances because he is her Attorney. However, if she has a heart attack, they will follow her Advance Decision because this was made more recently. George cannot tell the doctor not to follow his sister’s Advance Decision.
If Miss Hart had appointed George to be her Attorney AFTER making her Advance Decision, and she had given him the power to make decisions about life-sustaining treatment, he would have the power to tell the doctor not to follow her Advance Decision.
Making an LPA can invalidate an Advance Decision.
If both the LPA and the Advance Decision deal with refusing the same treatment, the more recent will take precedence for dealing with that treatment. For example, if an LPA for Health and Welfare that gives authority to make decisions about life-sustaining treatment is made after an Advance Decision, then the Advance Decision will become invalid, and all decisions about treatment will be referred to your Attorney(s). However, if a person makes an LPA Health & Welfare first, and then subsequently makes an Advance Decision that is valid and applicable to the circumstances the person is in, the healthcare team would refer to the Advance Decision when deciding what treatment to give.
If the Advance Decision is created before the LPA for Health and Welfare and the Advance Decision does NOT give the attorneys the power to make decisions about life-sustaining treatment, then there will be no potential conflict between the LPA and the Advance Decision.
However, most people make the Advance Decision after the LPA for Health and Welfare and grant attorneys general power relating to making life-sustaining treatment decisions. They can also be specific about certain situations in their Advance Decision.
Compassion in Dying suggest it’s a good idea to review and sign your Advance Decision quite regularly – e.g. every 2 years, as the more up to date it is, the more confident healthcare professionals can be that these are your current wishes. Updating an Advance Decision gives it a new ‘time stamp’ (so you don’t need to re-do the forms each time, just review, sign and date and distribute).
This means that if have created your LPA subsequent to your Advance Decision, you just need to update your Advance Decision to give it precedence.
Do your family and friends a favour….
It is important to communicate your wishes for care with family members and your doctor before the need arises. Families are saved a great deal of anxiety about doing as their loved one wants if an Advance Decision is discussed and completed.
Here’s what one participant wrote after our Advance Decision workshop:
It was brilliant to have the opportunity to look at all the practical issues that surround ageing and dying in a relaxed and friendly way, but with hands-on help from people who have researched all the possibilities and solutions. I don’t want to leave my children, relatives and friends with legal and emotional messes to deal with if I become incapable of looking after myself as I get older, nor to give them painful decisions to make about the different possibilities of where I might die. I want in fact to make my death as stress-free for them as possible! (D. Brooke)
To understand the significance of pre-planning your care, watch this impactful, 6-minute video clip from the UK government-sponsored ‘Dying Matters’:
The importance of making an Advance Decision is also emphasised in this article.
We encourage you to check out the implications of making an Advance Decision and creating an LPA. The availability of such legally binding measures varies from country to country. An Advance Decision is legally binding in the UK, but may have a lesser legal standing in other countries. Do research what is provided where you live. NB: ‘Advance Decision’ is known as an ‘Advance Directive’ in Australia and a ‘Living Will’ in the US, so what your country offers might also go under a different name.
Resources for the UK
Making decisions and planning your care. UK organisation supporting people in making Advance Decisions and Health and Welfare Lasting Power of Attorney. Includes a helpful library of factsheets; contact them to request a copy of their booklet “Planning Ahead” – an easy-to-read guide
Make, register or end a lasting power of attorney – UK government website where you can use their online tool or print off forms to complete by hand.
Some advice on Advance Decisions and definitions from DyingMatters.org
PatientPlus article on Advance Decision and LPA written by UK doctors and based on research evidence, UK and European Guidelines. Though designed for health professionals to use, it has useful pointersn fro the public.
Charity supplying ID bracelets engraved with details to allow faster diagnosis and treatment wishes if you are unable to communicate