End of life care: Guidance

1. 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.

2. 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:

(a) advanced, progressive, incurable conditions

(b) general frailty and co-existing conditions that mean they are expected to die within 12 months

(c) existing conditions if they are at risk of dying from a sudden acute crisis in their condition

(d) 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.

3. 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.

4. 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.

5. 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.

6. 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.

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