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, 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 poorer 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 the Human Rights Act 1998 and its main provisions, as your decisions are likely to engage the basic rights and principles set out in the Act5
The legal annex provides an explanation of the European Convention rights which are incorporated into the Act and which are most relevant to end of life decisions.
Presumption in favour of prolonging life
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.
Presumption of capacity
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.
Maximising capacity to make decisions
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 Decision making and consent and in the codes of practice supporting the Mental Capacity Act 2005 and Adults with Incapacity (Scotland) Act 2000.6
Information about this legislation, the supporting codes of practice and related guidance can be found in the legal annex.
If you conclude that 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).
The benefits of a treatment that may prolong life, improve a patient’s condition or manage their symptoms must be weighed against the burdens and risks for that patient, before you can reach a view about whether its could be in their interests. For example, it may not be in a patient’s interests to provide potentially life prolonging but burdensome treatment in the last days of their life when the focus of care is changing from active treatment to managing the patient’s symptoms and keeping them comfortable.
The benefits, burdens and risks associated with a treatment are not always limited to clinical considerations, and you should be careful to take account of the other factors relevant to the circumstances of each patient.
Patients who have capacity will reach their own view about what personal factors they wish to consider and the weight they wish to attach to these alongside the clinical considerations. (See the model for decision making in paragraph 14)
In the case of patients who lack capacity, their legal proxy will make these judgements with advice from you and others involved in the patient’s care. If you are responsible for making the decision about overall benefit, those close to the patient and members of the healthcare team are likely to have knowledge about the patient’s wishes, values and preferences and any other personal factors that should be taken into account. (See the model for decision making in paragraph 16.) You may also find information about the patient’s wishes in their notes, advance care plan or other record, such as an advance request for or refusal of treatment.
Some patients, and those close to them, may not be aware of the range of services and treatments available to them, which could have a bearing on the options they would see as being in their interests. You should satisfy yourself that the patient has sufficient information and support so that they are not disadvantaged in accessing beneficial treatment and care.
It may be particularly difficult to arrive at a view about the overall benefit of a treatment if the patient has problems in communicating their wishes and preferences, or lacks capacity. In such cases you must not simply rely on your own values or on those of the people consulted about the patient. You should take all reasonable steps to maximise the patient’s ability to participate in the decision-making process. You can find detailed advice about how to approach this in Decision making and consent.
You must be careful not to rely on your personal views about a patient’s quality of life and to avoid making judgements based on poorly informed or unfounded assumptions about the healthcare needs of particular groups, such as older people and those with disabilities.
If you assess that a patient lacks capacity8 to make a decision, you must:
a. be clear what specific decisions about treatment and care need to be made
b. check who has the responsibility to decide which option would be of overall benefit to the patient and make sure that reasonable steps are taken to find out:
- whether there’s evidence of the patient’s previously expressed values and preferences that may be legally binding, such as an advance refusal of treatment
- whether someone else has the legal authority to make the decision on the patient’s behalf or has been appointed to represent them. You should bear in mind that the powers held by a legal proxy9 may not cover all types of treatment, so you should check the scope of their decision-making authority10
c. If there is no evidence of a legally binding advance refusal of treatment, and no one has legal authority to make this decision for the patient, then, if you have lead responsibility for the patient’s treatment and care, you are responsible for deciding what would be of overall benefit to them11 .
In doing this, if you must:
- consult with those close to the patient and other members of the healthcare team, take account of their views about what the patient would want, and aim to reach agreement with them
- consider which option aligns most closely with the patient’s needs, preferences, values and priorities
- consider which option would be the least restrictive of the patient’s future options
Taking account of the considerations in paragraph 15, this is the decision-making model that applies if a patient lacks capacity:
- The doctor, with the patient (if they are able to contribute) and those who care for the patient12 , makes an assessment of the patient’s condition taking into account the patient’s medical history and the patient and carer’s (or carers’) knowledge and experience of the condition.
- The doctor uses specialist knowledge, experience and clinical judgement, together with any evidence about the patient’s views (including any advance statement and/ or advance care plan), to identify which investigations, treatments or options for managing the patient’s condition (including the option to take no action) are in the patient’s clinical interests and to decide which of those options is likely to result in their overall benefit.
- If the patient has made an advance refusal of treatment, the doctor must make a judgement about its validity and its applicability to the current circumstances. If the doctor concludes that the advance refusal is legally binding, it must be followed in relation to that treatment. Otherwise it should be taken into account as information about the patient’s previous wishes. (See paragraphs 67 - 74 on assessing the legal status of advance refusals.)
- If an attorney or other legal proxy has been appointed to make healthcare decisions for the patient, the doctor explains the relevant options to the legal proxy (as they would do for a patient with capacity), setting out the benefits, burdens and risks of each option. The doctor may recommend a particular option which they believe would provide overall benefit for the patient. The legal proxy weighs up these considerations and any non-clinical issues that are relevant to the patient’s treatment and care, and, considering which option would be least restrictive of the patient’s future choices, makes the decision about which option will be of overall benefit. The doctor should offer support to the legal proxy in making the decision, but must not pressurise them to accept a particular recommendation.
- As well as advising the legal proxy, the doctor must involve members of the healthcare team and those close to the patient13 as far as it is practical and appropriate to do so14 , as they may be able to contribute information about the patient that helps the proxy to reach a decision. If the legal proxy does not have the power to make a particular decision, the doctor must take account of the proxy’s views (as someone close to the patient) in the process of reaching a decision.
- In circumstances in which there is no legal proxy with authority to make a particular decision for the patient, and the doctor is responsible for making the decision, the doctor must consult with members of the healthcare team and those close to the patient (as far as it is practical and appropriate to do so) before reaching a decision. When consulting, the doctor will explain the issues; seek information about the patient’s circumstances; and seek views about the patient’s wishes, preferences, feelings, beliefs and values. The doctor may also explore which options those consulted might see as providing overall benefit for the patient, but must not give them the impression they are being asked to make the decision. The doctor must take the views of those consulted into account in considering which option would be least restrictive of the patient’s future choices and in making the final decision about which option is of overall benefit to the patient.
- In England and Wales, if there is no legal proxy, close relative or other person who is willing or able15 to support or represent the patient and the decision involves serious medical treatment16 , the doctor must approach their employing or contracting organisation about appointing an Independent Mental Capacity Advocate (IMCA), as required by the Mental Capacity Act 2005 (MCA). The IMCA will have authority to make enquiries about the patient and contribute to the decision by representing the patient’s interests, but cannot make a decision on behalf of the patient.
- If a disagreement arises about what would be of overall benefit, the doctor must attempt to resolve the issues following the approach set out in paragraphs 47 - 48.
- If a legal proxy or other person involved in the decision making asks for treatment or care that the doctor doesn’t think would be of overall benefit to the patient, the doctor should explore their reasons for requesting it, their understanding of what it would involve, and their expectations about the likely outcome. This discussion will help doctors take account of factors that are significant to the patient and assess whether providing the treatment or care could serve the patient’s needs. If after discussion the doctor still considers that the treatment or care would not serve the patient’s needs, then they should not provide it. But, they should explain their reasons to the proxy or other person involved in the decision making and explore other options that might be available, including their right to seek a second opinion, applying to the appropriate statutory body for a review (Scotland), and applying to the appropriate court for an independent ruling. For further guidance on acting on advance requests for treatment see paragraphs 63 - 66.