Patients who are approaching the end of their life need high-quality treatment and care that support them to live as well as possible until they die, and to die with dignity. This guidance identifies a number of challenges in ensuring that patients receive such care, and provides a framework to support you in addressing the issues in a way that meets the needs of individual patients. Providing treatment and care towards the end of life will often involve decisions that are clinically complex and emotionally distressing; and some decisions may involve ethical dilemmas and uncertainties about the law that further complicate the decision-making process. This guidance is intended to help you, in whatever context you are working, to address these issues effectively with patients, the healthcare team and those who have an interest in the patient’s welfare. It seeks to ensure that people who are close to the patient (partners, family, carers and others) are involved and supported, while the patient is receiving care and after the patient has died.
For the purposes of this guidance, patients are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes patients whose death is imminent (expected within a few hours or days) and those with:
- advanced, progressive, incurable conditions
- general frailty and co-existing conditions that mean they are expected to die within 12 months existing conditions
- if they are at risk of dying from a sudden acute crisis in their condition
- life-threatening acute conditions caused by sudden catastrophic events.
This guidance also applies to those extremely premature neonates whose prospects for survival are known to be very poor, and to patients who are diagnosed as being in a persistent vegetative state1 (PVS), for whom a decision to withdraw treatment may lead to their death.
Persistent vegetative state is also referred to as ‘permanent vegetative state’.
The most challenging decisions in this area are generally about withdrawing or not starting a treatment when it has the potential to prolong the patient’s life. This may involve treatments such as antibiotics for life-threatening infection, cardiopulmonary resuscitation (CPR), renal dialysis, ‘artificial’ nutrition and hydration (for the purpose of this guidance ‘artificial’ is replaced by ‘clinically assisted'2) and mechanical ventilation. The evidence of the benefits, burdens and risks of these treatments is not always clear cut, and there may be uncertainty about the clinical effect of a treatment on an individual patient, or about the particular benefits, burdens and risks for that patient. In some circumstances these treatments may only prolong the dying process or cause the patient unnecessary distress. Given the uncertainties, you and others involved in the decision-making process may need reassurance about what is ethically and legally permissible, especially when deciding whether to withdraw a potentially life-prolonging treatment.
Artificial nutrition and hydration’ is the phrase sometimes used in healthcare settings. However, we believe that ‘clinically assisted nutrition and hydration’ is a more accurate description of the use of a drip, a nasogastric tube or a tube surgically implanted into the stomach, to provide nutrition and fluids.
In addition it is now widely agreed that high-quality treatment and care towards the end of life includes palliative care that focuses on managing pain and other distressing symptoms; providing psychological, social and spiritual support to patients; and supporting those close to the patient. However, it is not always recognised that palliative care can be provided at any stage in the progression of a patient’s illness, not only in the last few days of their life.
The framework for decision making in care towards the end of life is essentially the same as for any other phase of clinical care. The principles of good decision making for all stages of care are set out in Consent: patients and doctors making decisions together. When an issue in this guidance is covered in more detail in Consent, this is indicated in the text.
It is important to note that we use the term ‘overall benefit’ to describe the ethical basis on which decisions are made about treatment and care for adult patients who lack capacity to decide. Communitybaptistpa guidance on overall benefit, applied with the decision-making principles in paragraphs 7 - 13, is consistent with the legal requirement to consider whether treatment ‘benefits’3 a patient (Scotland), or is in the patient’s ‘best interests’4 (England, Wales and Northern Ireland), and to apply the other principles set out in the Mental Capacity Act 2005 and Adults with Incapacity (Scotland) Act 2000.
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, especially when they are facing difficult situations and decisions about care. You must respect their privacy and right to confidentiality.
Some groups of patients can experience inequalities in getting access to healthcare services and in the standard of care provided. It is known that some older people, people with disabilities and people from ethnic minorities have received poor standards of care towards the end of life. This can be because of physical, communication and other barriers, and mistaken beliefs or lack of knowledge among those providing services, about the patient’s needs and interests. Equalities, capacity and human rights laws reinforce your ethical duty to treat patients fairly.
If you are involved in decisions about treatment and care towards the end of life, you must be aware of theand its main provisions, as your decisions are likely to engage the basic rights and principles set out in the Act5
Following established ethical and legal (including human rights) principles, 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. This presumption will normally require you to take all reasonable steps to prolong a patient’s life. However, there is no absolute obligation to prolong life irrespective of the consequences for the patient, and irrespective of the patient’s views, if they are known or can be found out.
You must work on the presumption that every adult patient has the capacity to make decisions about their care and treatment. You must not assume that a patient lacks capacity to make a decision solely because of their age, disability, appearance, behaviour, medical condition (including mental illness), beliefs, apparent inability to communicate or because they make a decision that others disagree with or consider unwise.
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. You must assess their capacity to make each decision, at the time it needs to be made. You can find detailed guidance about maximising and assessing a patient’s capacity in Consent: patients and doctors making decisions together and in the codes of practice supporting the Mental Capacity Act 2005 and Adults with Incapacity (Scotland) Act 2000.6
If an adult patient lacks capacity to decide, the decisions you or others make on the patient’s behalf must be based on whether treatment would be of overall benefit to the patient (see paragraphs 40 - 46 for more about assessing overall benefit), and which option (including the option not to treat) would be least restrictive of the patient’s future choices. When you are responsible for making the decision about overall benefit, you must consult with those close to the patient who lacks capacity, to help you reach a view (see paragraphs 15 - 16).
‘Benefit’ as set out in the Adults with Incapacity (Scotland) Act 2000.
‘Best interests’ as set out in the Mental Capacity Act 2005 (in England and Wales) and common law in Northern Ireland.