Consent and Ethics: Adults
End of life care
Medical treatments should not be provided to patients:
- where they are unlikely to provide benefit
- where they have been refused by a competent patient
- where there is a prior advance decision that is valid and applicable.
In practice these decisions and associated discussions may be very difficult for clinicians and distressing for patients and their families. Questions of what constitutes futility, the extent to which patients wishes should prevail over clinicians, and how far patients should be involved in decisions have all caused particular difficulty.
Recent guidance has emphasized that competent patients must be involved in decisions to withdraw care, or withhold lifesaving treatments such as CPR, even if attempts are likely to be futile. For patients who lack capacity, all decisions should be taken in the fullest sense of their best interest, and take into account any known views of the patient and their family. However the specific wishes of patients and families should not override the views of clinical teams where the risks, burdens and benefits of a treatment outweigh any likely benefit. The goal should be to reach consensus with patients or their families as sensitively as possible, providing second opinions wherever practical, and using mediation services and legal advice if necessary. The courts may be required as a last resort.
The following links explore recent cases involving end of life care and withdrawal of therapies in patients lacking capacity:
- UK Supreme Court Blog - Aintree University Hospitals NHS Foundation Trust v James  UKSC 67
- McLeod, A. A summary of recent legal cases relating to the Mental Capacity Act
Links to key resources are provided below to key guidance from the General Medical Council (GMC), The Resuscitation Council UK and British Medical association (BMA). Professional bodies such as the Intensive Care Society also provide further resources, as do the GMC and BMA. Other bodies such as medical defence organisations and ethics groups also provide useful information.
- ReSPECT - Recommended Summary Plan for Emergency Care and Treatment - ReSPECT is a process that creates personalised recommendations for a person’s clinical care in a future emergency in which they are unable to make or express choices. It provides health and care professionals responding to that emergency with a summary of recommendations to help them to make immediate decisions about that person’s care and treatment. ReSPECT can be complementary to a wider process of advance/anticipatory care planning.
- Fritz Zoë, Slowther Anne-Marie, Perkins Gavin D. Resuscitation policy should focus on the patient, not the decision. BMJ2017;356:j813
- Compassion in Dying - A UK charity that helps patients and their doctors draw up Advance Care Plans and other matters.
- MyDecisions - An online tool for developing an advance decision and advance statement.
Other useful sources of information
- General Medical Council (GMC) – Guidance on end of life care and decision making
- Resuscitation Council (UK), British Medical Association and Royal College of Nursing – CPR decision making
- Resuscitation Council (UK) – DNACPR model forms
- End-of-life decisions (views of the British Medical Association)
- Faculty of Intensive Care Medicine and Intensive Care Society – Guidelines for the Provision of Intensive Care Services
- Do Not Attempt CPR – Legal updates from the University of Southampton
- NHS England – Leadership Alliance for the Care of Dying People
- Resources from the UK Clinical Ethics Network
- Wilkinson D, Truog R, Savulescu J. In Favour of Medical Dissensus: Why We Should Agree to Disagree About End‐of‐Life Decisions. Bioethics. 2016;30(2):109-118.
- Steinberg SM. Cultural and religious aspects of palliative care. In J Crit Ill In Sc 2011;1(2):154–156*
- London Mallee Regional Palliative Care Consortium – An Outline of Different Cultural Beliefs at the time of Death*
Useful podcasts dealing with case specific situations:
- Inside the Ethics Committee, BBC Radio 4 – End of life and Islam*
- Inside the Ethics Committee, BBC Radio 4 – Withdrawing treatment
Below is a link to an NHS Health Education England e-LfH e-learning module that deals with many of the issues addressed above:
At the end of life patients, families and clinicians may want to consider organ donation. Here are links relating to organ donation and religious beliefs:
- NHS England - Organ Donation and Transplantation
- NHS England - Organ Donation: What does my religion say?
*We have tried to find freely accessible resources on the practices and processes of the different religions around end of life care. We would be grateful for any additions to this section. If you know of any helpful open access resources in this area please contact us here