In this section we provide information about some key issues affecting care in illness and at the end of life.
Advance care planning involves thinking about decisions for your future. It might involve talking to people who are important to you, such as a partner, your family or doctor.
Advance plans expressing preferences about care and treatment can guide families and/or healthcare professionals acting for people who are unable to make decisions for themselves. Under the Mental Capacity Act it is now possible to set on record ‘advance decisions’ to refuse specific treatments in particular circumstances.
The National Council for Palliative Care has produced a summary guide to the Mental Capacity Act, written with patients relatives and health care assistants in mind as well as other health and social care staff. The publication gives information about the Mental Capacity Act and its impact on end of life care and contains a number of checklists.
Advance plans can be made for the more everyday decisions that have a major impact on our lives. These might have nothing to do with medical treatment. Such decisions might include the place where we would want to be looked after if we were to become incapable of looking after ourselves. Or they may involve appointing a person who can represent you. Under the Mental Capacity Act, this is known as ‘lasting power of attorney’.
It can be difficult to think ahead and the plans you want to make will depend on your beliefs and personal views about what contributes to your quality of life. Some people will not wish to make any plans. Others may want to set on record preferences about things they feel strongly about.
Not everyone lives in a traditional 'family'. Advance care planning can help you to state who is important in your life and who should be consulted if you are ill. Of course, many of the issues that involve thinking about end of life care will be similar regardless of what sort of family links you have or whether you are lesbian, gay or heterosexual.
You can find more information relating to later life as a lesbian, gay or bisexual here.
Similarly, there may be issues specific to elderly black and minority ethnic people which can improve quality of life. For information relating to quality of life for elderly black and minority ethnic people visit: www.priae.org/
Age UK have also produced a 'LifeBook'. This allows you to record all sorts of useful details to help you and those close to you locate important information in the event of an emergency. It is available in hard copy format by calling 0845 685 1061 or online.
Joseph Potter had recently retired from work and lived with his wife Emily in a small village. Sadly, Emily’s mother had recently died. This made Joseph and Emily think about the type of care they would want to receive if they were seriously ill. After hearing a programme on the radio about ‘advance decisions to refuse treatment’, they felt that this was something they would like to know more about. They realised that these used to be called ‘living wills’.
After searching out more information about advance decisions, Joseph and Emily felt unsure about completing such a document. Joseph said he did not want to record instructions about specific treatments because he did not feel strongly that he would want to refuse them. It seemed more important to him to leave a record of his values and beliefs that might help his family decide things for him if he could not make decisions for himself.
A number of things were particularly important to Joseph. For example, he enjoyed the companionship of his dog Jamie. He wanted to be sure that his dog would be cared for if he or his wife were unable to do so. He felt that if he needed to receive residential care at some point, Jamie should be able to visit him. Joseph was very fond of music, too, and found it spiritually comforting.
For Emily, it was her faith that mattered a great deal. Emily knew she would want to receive spiritual support if she was seriously ill.
These include cardio-pulmonary resuscitation (heart and lung), artificial feeding and hydration (sometimes called clinically assisted nutrition and hydration) administered by a tube which enters the body, ventilation (breathing by a machine) and intravenous medicine (by drip or injection).
This includes nursing care, pain relief and relief of other symptoms, and the offer of food or drink by mouth (perhaps with a spoon, straw or cup).This kind of care may also be referred to as comfort care.
The code of practice produced by the British Medical Association states that patients can refuse life-sustaining medical treatment, but they cannot refuse basic care.
This is the giving of food in a way which does not require ‘eating’ in the normal way by mouth. It involves the delivery of food to the person’s body by a tube or by a drip into the bloodstream. The National Council for Palliative Care have published guidance on this issue. See shop.ncpc.org.uk.
Consent and capacity
Consent must be sought for all medical treatments. Giving (or refusing) consent is the means by which people can choose to accept (or refuse) medical treatments. To give valid consent people need to be able to access and understand appropriate information relating to the decision they need to make.
It is assumed that adults have the ability (capacity) to make decisions unless this can be proved otherwise. If a person is shown to lack capacity, treatment may be provided to them where doctors think it is in that person’s best interests.
Clinical staff must take all possible steps to maximise the decision making capacity of individuals. This should include providing simple information in a language that people can understand, or in some audiovisual format if that is more appropriate.
Health professionals also need to recognise that a person’s capacity will vary. Decisions with serious consequences require a greater degree of capacity than simpler decisions. The Code of Conduct for the Mental Capacity Act is a comprehensive source of further information about these issues.
Withdrawing and withholding life-sustaining medical treatment
Currently in the UK it is recognised that where death is inevitable life-sustaining treatments such as resuscitation, artificial ventilation, dialysis or artificial feeding may be withdrawn or withheld. In such cases the goal of medicine becomes the relief of symptoms. ‘Basic care’ and comfort must be provided and can never be withheld.
Removing life-prolonging treatments is not euthanasia
It is acknowledged that sometimes giving adequate symptom control or withholding or withdrawing life-prolonging treatments may hasten a death that is already expected. This is not euthanasia.
In most instances, however, giving medical treatment according to accepted best practice – for example, using drugs to relieve pain and other symptoms – does not hasten death. Despite the legal distinction outlined above, ethical and legal debate about withholding or withdrawing life-prolonging treatments continues on many fronts.
What does ‘assisted dying’ mean and is it likely to become legal in the UK?
There is a wide spectrum of views about assisted dying and many misunderstandings about it. Assisted dying involves either euthanasia or assisted suicide. It is illegal in the UK. A widely accepted definition of euthanasia is: ‘Euthanasia is killing on request and is defined as: a doctor intentionally killing a person by the administration of drugs at that person’s voluntary and competent request’
(see Materstvedt, L.J., Clark, D., Ellershaw, J. et al. (2003) Euthanasia and physician assisted suicide: a view from an EAPC Ethics Task Force. Palliative Medicine, 17(2): 97–101)
In assisted suicide, a doctor or another individual will provide drugs to a person, who then uses them to take their own life voluntarily.
In Belgium and the Netherlands, euthanasia at the voluntary request of a competent adult is now legal under very tightly defined circumstances.
In Switzerland, although voluntary euthanasia is illegal, assisted suicide sometimes takes place and, if it can be proved that help is given for altruistic motives, the person assisting may not be prosecuted. You may have heard reports about this. The campaigning organization which seeks to promote medically assisted dying in the UK ‘Dignity In Dying’ provides further information about different practices in different countries. See www.dignityindying.org.uk
Periodically, there have also been attempts to change the law in the UK. A bill ‘Assisted Dying for the Terminally Ill’ which sought to legalise what it called “assisted dying”, was defeated on its second reading in the House of Lords on 12 May 2006 by a margin of 148 votes to 100. The National Council for Palliative Care, which campaigns to promote palliative care for all who need it, opposed the Bill. The response of the National Council for Palliative Care to the report on assisted dying by the House of Lords Select Committee can be found here: http://www.ncpc.org.uk/assisted-suicide
Sources of further information
Fairweather, M. and Border, R. Living Wills and Enduring Powers of Attorney. 2001. London: Cavendish Publishing.
Kendrick, K. and Robinson, S. Their Rights: advance directives and living wills explored. 2002. London: Age Concern England.
The Patients' Association. Living Wills: a guide for patients. 2003. Middlesex: The Patients' Association.
TUC. Living Wills: advice for trade union members. 2004.
* We have drawn on some materials developed in the Peer Education Programme for End of Life Care Education among Older People and Their Carers, funded by The Burdett Trust for Nursing with additional support from Age UK. The Programme is led by Jane Seymour, Sue Ryder Care Professor of Palliative and End of Life Studies at the University of Nottingham (firstname.lastname@example.org; 0115 8231202).