Features: Treatment and care towards the end of life
02 June 2010
The GMC has produced new guidance to help doctors address the complex ethical principles that help them make decisions at the end of life and provide better care to patients. GMCtoday takes a closer look.
New guidance has been published by the GMC on Treatment and care towards the end of life: good practice in decision making. The guidance, produced following an extensive consultation with doctors and patients, will replace Withholding and Withdrawing Life-Prolonging Treatments published in 2002.
How the guidance can help you
Overview of what the guidance covers
What's new?
What the guidance provides
What it does not provide
Good communication is essential to good care
Work constructively with colleagues
Treat patients fairly and with respect
How the guidance can help you
Making sure patients get good care as they approach the end of life gives rise to many ethical, legal and practical challenges for doctors. Most of these issues are complex and have no simple solution. Each patient’s needs and circumstances must be considered individually and judgements made about how to help them receive the right care.
The guidance cannot provide answers to specific questions or tell doctors what to do. What it can do is provide a framework of ethical principles, indicate legal obligations and give advice about how the guidance applies in particularly difficult areas, such as CPR. You can use the guidance:
- to gain a broad understanding of the ethical framework in which you are expected to work
- to see what is expected of you in key areas such as:
- making decisions where patients lack capacity
- how to involve families and carers in making decisions
- advance care planning
- DNA CPR
- providing nutrition and hydration by tube or drip
- as a sign-posting document to legislation and case law; and to more detailed specialist guidance.
Alongside the guidance we have published a flow chart showing a path for making decisions for patients who lack capacity. We illustrate some of the key points along the path with vignettes describing the issues that are raised with links back to the guidance. We will also produce a set of longer case studies to bring the guidance to life. The first two – on deciding whether to provide nutrition or hydration by tube or drip; and on when and how to make a DNA CPR decision – are published alongside this guidance. View additional learning materials
What the guidance provides
- Advice on the ethical and legal principles that underpin good care
- Guidance on how to put these principles into practice in areas such as CPR, nutrition and hydration by tube or drip
- Advice on working in partnership with patients, involving families and carers, working in teams, consulting colleagues
- Vignettes, case studies and links to guidance from a wide range of specialty organisations and government
What it does not provide
- Advice on euthanasia and assisted suicide, which are illegal
- Rules about how to deal with specific circumstances
- Legal advice – but the guidance is consistent with the law across the UK
- Clinical advice
Overview of what the guidance covers
The guidance is based on some fundamental principles:
Equalities and human rights – you must give patients who are approaching the end of their life the same quality of care as all other patients. You must treat patients and those close to them with dignity, respect and compassion.
Presumption in favour of prolonging life – decisions concerning potentially life-prolonging treatment must not be motivated by a desire to bring about the patient’s death and must start from a presumption in favour of prolonging life. However, there is no absolute obligation to prolong life irrespective of the consequences for the patient or of the patient’s views.
Presumption of capacity – you must work on the presumption that every adult patient has the capacity to make decisions about their care and treatment.
Maximising capacity – if a patient’s capacity to make a decision may be impaired, you must provide the patient with all appropriate help and support to maximise their ability to understand, retain, use or weigh up the information needed to make that decision or communicate their wishes.
Overall benefit – if an adult patient lacks capacity to decide, you must consider the benefits, burdens and risks of treatment options before deciding what would be of overall benefit to the patient.
The guidance provides two decision making models: for adult patients who have capacity to make decisions; and for patients who lack capacity. These reflect both the ethical principles and the legal requirements across the UK. In particular they emphasise the need for working in partnership: with the patient, where possible; with the patient’s family and carers; and with the wider healthcare team.
What’s new?
We undertook the review to ensure that this important guidance for doctors is up to date and reflects current law, medical practice and a consensus on good practice between the profession and the public. To achieve this we drew on the experience and knowledge of working group members who came from a wide range of backgrounds in healthcare, law and ethics, and from patient groups. We also consulted widely with the profession and the public to explore the issues of most concern to both doctors and patients.
The responses to the consultation led to significant changes to our draft. The 2002 guidance focused on withholding and withdrawing treatment. This guidance takes a broader approach to care of patients as they approach death. This means that we have new or expanded guidance on:
- assessing overall benefits
- advance care planning
- the role of relatives, partners and others close to the patient
- acting on advance refusals or requests for treatment
- treating neonates, children and young people
- DNA CPR
- nutrition and hydration
- organ donation
- care after death.
Good communication is essential to good care
- Listening to patients and those close to them
- Explaining the situation and options in a way patients can understand
- Creating opportunities for patients to talk about difficult issues, such as where they want to die
- Making extra time for patients who have trouble understanding or expressing themselves – such as patients with learning disabilities or dementia
- Revisiting issues and checking the patient still feels the same way, as their clinical condition progresses
- Responding sensitively to the wishes and needs of the bereaved for information and support, involving other members of the team where appropriate
Work constructively with colleagues
- Sharing information necessary to provide the patient with safe, effective and timely care with other members of the health and social care team (unless the patient objects)
- Consulting other members of the team who may have information about the patient or relevant knowledge and experience that may help in managing or treating the patient’s condition
- Understanding that your colleagues may find these issues difficult too
- Discussing contentious issues and exploring reasons for disagreements if they arise
- Consulting experienced colleagues from medicine or other disciplines if you are not sure about a decision, or you lack specialised knowledge or experience
Treat patients fairly and with respect
- All patients are entitled to expect good care at the end of their life
- Ensuring that access to care is provided fairly to all groups in society including older people, people from ethnic minorities and people with disabilities
- Not making judgements based on poorly informed or unfounded assumptions about the healthcare needs of particular groups, such as older people and those with disabilities
- Respecting patients’ dignity and privacy
- Ensuring patients are given information about the services available to them
- Making sure, wherever possible, that the body is handled in line with the patient’s personal, religious or other beliefs