Treatment and care towards the end of life: good practice in decision making
Working with the principles and decision-making models - cont.
Recording and communicating decisions
You must make a record of the decisions made about a patient’s treatment and care, and who was consulted in relation to those decisions.
You must do your best to make sure that all those consulted, especially those responsible for delivering care, are informed of the decisions and are clear about the goals and the agreed care plan, unless the patient indicates that particular individuals should not be informed.
You should check the handover arrangements where you work, and use the available systems and arrangements for information storage and exchange, to ensure that the agreed care plan is shared within the healthcare team, with both paid and unpaid carers outside the team and with other health professionals involved in providing the patient’s care. This is particularly important when patients move across different care settings (hospital, ambulance, care home) and during any out-of-hours period. Failure to communicate some or all relevant information can lead to inappropriate treatment being given (for example, DNACPR decisions not being known about) and failure to meet the patient’s needs (for example, their wish to remain at home not being taken into account).
A patient’s condition may improve unexpectedly, or may not progress as anticipated, or their views about the benefits, burdens and risks of treatment may change over time. You should make sure that there are clear arrangements in place to review decisions. New decisions about starting or continuing with a treatment may be needed in the light of changes in the patient’s condition and circumstances, and it may be necessary to seek a second opinion or, if this is not possible, advice from an experienced colleague.
You can withdraw from providing care if your religious, moral or other personal beliefs about providing life-prolonging treatment lead you to object to complying with:
- a patient’s decision to refuse such treatment, or
- a decision that providing such treatment is not of overall benefit to a patient who lacks capacity to decide.
However, you must not do so without first ensuring that arrangements have been made for another doctor to take over your role. It is not acceptable to withdraw from a patient’s care if this would leave the patient or colleagues with nowhere to turn. Refer to our guidance on Personal beliefs and medical practice (2013) for more information.
If you disagree with a decision to withdraw or not to start a life-prolonging treatment on the basis of your clinical judgement about whether the treatment should be provided, you should follow the guidance in paragraphs 47 - 48 about resolving disagreements.
You should aim to reach a consensus about what treatment and care would be of overall benefit to a patient who lacks capacity. Disagreements may arise between you and those close to the patient, or between you and members of the healthcare team, or between the healthcare team and those close to the patient. Depending on the seriousness of any disagreement, it is usually possible to resolve it; for example, by involving an independent advocate, seeking advice from a more experienced colleague, obtaining a second opinion, holding a case conference, or using local mediation services. In working towards a consensus, you should take into account the different decision-making roles and authority of those you consult, and the legal framework for resolving disagreements.
If, having taken these steps, there is still significant disagreement, you should seek legal advice on applying to the appropriate statutory body for review (Scotland) or appropriate court for an independent ruling.22 The patient, those authorised to act for them and those close to them should be informed, as early as possible, of any decision to start such proceedings, so that they have the opportunity to participate or be represented.
If a patient is close to death and their views cannot be determined, you should be prepared to explore with those close to them whether they had expressed any views about organ or tissue donation, if donation is likely to be a possibility.
You should follow any national procedures for identifying potential organ donors and, in appropriate cases, for notifying the local transplant coordinator. You must take account of the requirements in relevant legislation and in any supporting codes of practice, in any discussions that you have with the patient or those close to them. You should make clear that any decision about whether the patient would be a suitable candidate for donation would be made by the transplant coordinator or team, and not by you and the team providing treatment.
Care after death
Your professional responsibility does not come to an end when a patient dies. For the patient’s family and others close to them, their memories of the death, and of the person who has died, may be affected by the way in which you behave at this very difficult time.
The wishes and needs of the bereaved
Death and bereavement affect different people in different ways, and an individual’s response will be influenced by factors such as their beliefs, culture, religion and values. You must show respect for and respond sensitively to the wishes and needs of the bereaved, taking into account what you know of the patient’s wishes about what should happen after their death, including their views about sharing information.28 You should be prepared to offer support and assistance to the bereaved, for example, by explaining where they can get information about, and help with, the administrative practicalities following a death; or by involving other members of the team, such as nursing, chaplaincy or bereavement care staff.
Certification, post-mortems and investigations
You must be professional and compassionate when confirming and pronouncing death and must follow the law, and statutory codes of practice, governing completion of death and cremation certificates. If it is your responsibility to sign a death or cremation certificate, you should do so without unnecessary delay. If there is any information on the death certificate that those close to the patient may not know about, may not understand or may find distressing, you should explain it to them sensitively and answer their questions, taking account of the patient’s wishes if they are known.
You must comply with the legal requirements where you work for reporting deaths to a coroner (England, Wales and Northern Ireland) or procurator fiscal (Scotland). You should be prepared to answer questions from those close to the patient about reporting procedures and post-mortems, or to suggest other sources of information and advice.
You must treat the patient’s body with dignity and respect. You should make sure, wherever possible, that the body is handled in line with their personal religious or other beliefs.
Training and audit
You should be familiar with relevant guidelines and developments that affect your work in providing care towards the end of life, and regularly take part in educational activities that maintain and develop your competence and performance in this area. You must keep up to date with the law and any supporting codes of practice that are relevant to this area and apply where you work.
There may be events arising from the care of a particular patient by your team, unit or practice that suggest ways of improving treatments or standards of care for patients approaching the end of life. You should participate constructively in any local arrangements, such as clinical audit and case reviews, that aim to improve outcomes and identify and spread good practice.