Mental Capacity Act and end of life care

info@dignityindying.org.uk - 020 7479 7730

“I believe that decisions about the timing and manner of death belong to the individual as a human right. I believe it is wrong to withhold medical methods of terminating life painlessly and swiftly when an individual has a rational and clear-minded sustained wish to end his or her life.”Professor A C Grayling, Dignity in Dying Patron
“Having seen my father die, it became very clear to me that we as society need to grasp the nettle and deal with this contentious issue in a way that is humane and acceptable to the majority of right thinking people.”Matthew Wright, Dignity in Dying Patron
“As a doctor for over 35 years, I became increasingly aware of the failure of even the best care to deal with the suffering of some patients. The present clinical, ethical, and legal fudge - and a law which is discredited in practice - is dangerous for patients and also for professionals.”Professor Raymond Tallis, Dignity in Dying Patron
“I support Dignity in Dying because I care about suffering and want the law changed so that those who presently suffer terrible deaths will in future have the option to end their suffering through ending their lives at a time and in the manner of their choice.”Lord Joffe, Dignity in Dying Patron
“Knowing that most of us, it seems, want the freedom to choose when and how to end our lives so as to avoid, for ourselves and our families, the harrowing consequences of a messy, drawn-out and painful deaths, that choice must be enshrined in a framework of law.”Professor Eric Bolton CB, Dignity in Dying Patron
“Having been a member of Dignity in Dying for thirty years I fully support the campaign to ensure that all people have, what they consider to be, a good death. The option of an assisted death at the end of life would provide the choice and control we all deserve.”Miriam Karlin OBE, Dignity in Dying Patron
“As a child there existed in my mind a nagging fear about this thing called death. As I have become older, I want to give an assurance to the people I love that the circumstances of their death will be 'good', to be celebrated, and their final hours will be reflective of life well lived.”Jo Brand, Dignity in Dying Patron
“I believe that the exercise of free will concerning the end of life, and the timing of the end of life, is an essential human freedom. I believe that while religious dogma may dictate or limit the choice of believers it should not be imposed on others.”Rabbi Dr Charles Middleburgh, Dignity in Dying Patron
“Being incapable of helping a loved one to die when they are at the end of their life, suffering and asking for help is undignified and wrong, and I know this having witnessed it myself at close hand.”Zoe Wannamaker, Dignity in Dying Patron
“It is because we believe in the dignity and value of life that we hope for a good death. This is what Dignity in Dying hopes to permit and I passionately support its aims. To linger on against my will on a half-life is no life at all.”A.N Wilson, Dignity in Dying Patron
“My wife, Diane Pretty, had the terminal illness motor neurone disease and wanted to receive medical assistance to die with dignity. During the last weeks of her life, Diane was in considerable pain and distress. The very thing she'd fought through the courts to avoid.”Brian Pretty, Dignity in Dying Patron
“My brother John Close died with help from Dignitas in May 2003, aged 55. Motor Neurone Disease had robbed John of almost everything which defined him as human, but the knowledge that he would be in control of his death was a source of great comfort to both of us.”Lesley Close, Dignity in Dying Patron
“Over many years, I have become convinced of the need for a change in the law to protect people with terminal illness who have made the painful decision to seek help in dying. This is why, once I left government, I joined Dignity in Dying and will go on supporting their campaign until we succeed.”Rt Hon Patricia Hewitt MP, Dignity in Dying Patron
“My mother, Dr Anne Turner, chose to have an assisted death in 2006 at Dignitas in Zurich. Once my mother had been accepted for an assisted death, she was able to enjoy her life for the remaining time she had, greatly reassured that she would be spared further suffering.”Sophie Pandit, Dignity in Dying Patron
“As someone who helped her son to die when he could no longer face the suffering caused by Huntington's disease, I understand fully the need to have a safe, regulated right to die system that takes the pressure off family. After all, who would let their loved ones die alone?”Heather Pratten, Dignity in Dying Patron
“I see it as almost inevitable, that society will become more understanding, and more sophisticated, about assisted dying. As with suicide, it is right to strive to find better options, but when the alternatives have run out it must surely be wrong for society to insist that people suffer.”Nick Ross, Dignity in Dying Patron
“I endorse the work of Dignity in Dying because I believe passionately that any individual should have the right to choose, as far as it is possible, the time and the conditions of their death. I think it's time we learned to be as good at dying as we are at living.”Sir Terry Pratchett, Dignity in Dying Patron
“My father, who was suffering from cancer and no longer wished to live, died as he chose: in peace and dignity, with my mother beside him. I passionately hope that, if I too were terminally ill, and was finding life unbearable, I could be allowed to die at a time of my choosing.”Rosemary Brown OBE, Dignity in Dying Patron
“I wish to be treated as a responsible adult and believe that people should be legally able to register their wish for an assistance with suicide, if needed. I support Dignity in Dying primarily to help change the law on assisted suicide.”Sir Michael Holroyd CBE, Dignity in Dying Patron
“My work as a cancer physician inevitably brought me into contact with dying people. I think that assisted dying is an important choice to be offered in the rare situations where doctors are unable to control unbearable symptoms.”Dr Lisa McDonald, Dignity in Dying Patron

Mental Capacity Act
and Advance Decisions

Advance Decisions are now provided for free from our partner charity, Compassion in Dying.

This section answers frequently asked questions about advance decisions (formerly living wills) and the Mental Capacity Act.

What is the Mental Capacity Act (MCA)?

The MCA is Government legislation which provides a statutory framework to empower and protect vulnerable people who are not able to make their own decisions. It achieves this, in part, by enabling people to plan ahead for a time when they may loose capacity. The aspects which involve planning ahead, namely Advance Decisions and Lasting Powers of Attorney, came into force on October 1st 2007.

What changes were made to Advance Decisions/living wills following the MCA?

The same rules apply to our Advance Decisions as did to our previous living will. The main difference is that under the MCA if you wish to refuse life-sustaining treatment you must include a statement saying that this is your will, even if the result will be the shortening of your life. This statement is included in Compassion in Dying's advance decision.

The Mental Capacity Act guidance states that the situations set out in the Advance Decision must be unambiguous, meaning that you should be as clear and specific as you can. This is why our new Advance Decision includes a section where you can add, in your own words, exactly the situations in which you would like to refuse or consent to treatment (sections 1 (D) and 2 (C)).

We continue to strongly advise that you talk to your GP about your Advance Decision.

Is my existing living will legally binding?

The Mental Capacity Act states that "The Advance Decision must include a clear, specific written statement from the person making the Advance Decision that the Advance Decision is to apply to the specific treatment even if life is at risk."

You can continue to use your existing Advance Decision/living will, but in order to ensure that it is legally binding under the Mental Capacity Act you must write the following statement in the section referring to the refusal of life-sustaining treatment:

The decision set out in my living will, will apply, even if my life is at risk as a result.

This statement must be signed, dated and witnessed.

Do I have to amend every copy?

You can amend your personal copy and send a photocopy of the amendment to the people you have lodged your Advance Decision/living will with, eg, your GP, friend, relative or solicitor and ask them to attach it to their copy of your living will.

Your original copy may be called upon should your living will need to be used, so do ensure that someone else knows where it is kept.

How frequently should I review my Advance Decision/living will?

This is a question that we are regularly asked and unfortunately is impossible for us to answer, as there has been no guidance provided in the Mental Capacity Act. Our advice is to review and re-sign it regularly, and to ensure you re-sign it if you know you are being admitted into hospital.

How will my treating health care team know that I have an Advance Decision?

The ongoing problem is that there will still be no registration facility for Advance Decisions and therefore it is the responsibility of the individual to show that they have one. You can do this by carrying your 'notice of Advance Decision card' (which comes with the Compassion in Dying Advance Decision), or carrying a copy of your Advance Decision with you.

You should ask your GP to keep a copy of your Advance Decision on your medical record - if your GP refuses contact Compassion in Dying. You can ask your local hospital to keep a copy of your Advance Decision on file.

Are Advance Decisions legally binding in Scotland and Northern Ireland?

The Mental Capacity Act does not apply to Scotland or Northern Ireland.

In Scotland, Advance Decisions/living wills are often referred to as 'advance directives'. Advance Decisions are not legally enforceable under Scotland's Adults with Incapacity Act 2000 (which is roughly equivalent to the MCA in England and Wales), but may be supported by this Act as one of its general principles is that the wishes of an adult should be taken into consideration when acting or making a decision on their behalf.

However, Advance Decisions remain legally binding under common law in Scotland and Northern Ireland.