End of Life Care in Frailty: Law and ethics

Ethical principles

Respect for the intrinsic value of human life and respect for the dignity of all human life

The role of healthcare is to promote health and wellbeing and prevent harm - but this does not mean preserving life at all costs. Death is an inevitable consequence of life. Our duty of care as healthcare professionals encompasses a duty to recognise that prognosis is uncertain and death may be approaching, to communicate this to our patients, to change the focus of our care to ensuring quality of life and, to minimise symptoms and disability at the end of life. If dying is not recognised, then harm may result from provision of burdensome and undignified treatment and, loss of time to accept death and say goodbye.

Right to self-determination and respect for autonomy

This right is protected by our duty to obtain informed consent for all medical care and treatment. Treatment (even life-saving/prolonging treatment) without consent is battery. Every patient has the right to be a partner in medical decisions and the right to refuse treatment (if capacitous - or via Lasting Power of Attorney [LPA] or Advance Decision to Refuse Treatment [ADRT] if not).

It is our duty is to ensure that patients and their families are supported to make informed choices for themselves and are enabled to take some control over the last phase of their life - including where they want to be, what care they would want and who they want to have around them at the end of their life. This can only happen if they are given time and information about their prognosis.

Benefit and burden (beneficence/nonmaleficence)

All healthcare interventions are a balance of benefit versus harm. The same decision-making process of balancing potential benefit versus burdens of treatment can be used for all proposed healthcare interventions. However each person will make a different decision based on how they rank particular goals and what they are willing to risk or bear to achieve those goals.

To enable the person to make the right decision we need to give them the information they require, which must include their prognosis with and without particular treatments. We need to listen to the person and give them the opportunity to tell us their hopes and fears. In the last phase of life the goals of medical care generally change from life prolonging to symptom relief and quality of life, which changes the position of the fulcrum on which these decisions are balanced.

Justice/fairness – The Human Rights Act 1998

The right to be treated fairly is enshrined in law within the HRA. The four articles of most relevance to healthcare are:

• Article 2 - Right to Life
• Article 3 - Right to freedom from torture and inhuman or degrading treatment
• Article 8 - Right to respect for family and private life
• Article 14 - Protection from discrimination in respect of these rights and freedoms.

Where healthcare professionals and patients or their advocates disagree, the Court is the ultimate arbiter. However, before getting to this stage, there are a number of options to resolve conflict; if there is any doubt about the correct course of action it is good practice to seek a second opinion. Clinical ethics committees where available can support clinicians with difficult ethical dilemmas, and some Trusts also employ mediators to help resolve conflict. If disagreement between clinicians and patient/family cannot be resolved then the matter should be taken to the Court of Protection for a decision.

Other ethical issues

Confidentiality

Healthcare professionals have a duty of confidentiality to their patients. Information must not be divulged without justification and consent (where possible - or in best interests when not). However the duty of confidentiality does not preclude healthcare professionals seeking information from additional sources to gain a clearer clinical picture. Moreover, in order to provide care across disciplines and services it is important to share information which is necessary for that care to be appropriate to the person’s wishes and needs. This applies to informal carers (i.e. family and friends) as well as formal carers, emergency services and other teams involved in that person’s care. Where a person has cognitive impairment which is impairing their ability to make capacitous decisions, it is essential to consult family and friends in order to make decisions in their best interests.

Do not attempt cardiopulmonary resuscitation (DNACPR)

Healthcare professionals are not under an obligation to provide clinical care which they do not deem to be effective or clinically indicated. DNACPR decisions fall within this scope. However, if it is felt that CPR could be successful or if there is any doubt as to whether CPR would be effective the patient must be consulted and may choose to accept or decline CPR. If the patient does not have capacity for the decision, their family must be consulted. If a family member holds a valid LPA for the patient then they can choose to decline CPR on behalf of the patient.

If the clinical team do not feel CPR would be effective, they must inform the patient or family of this decision. No-one (patient or family member) can force the treating team to provide CPR, however the Courts have found clinicians to be in breach of Article 8 of HRA (right to respect for private and family life) for not providing adequate information to the patient or their family. If the patient or family disagree with a DNACPR decision it is good practice to obtain an independent second opinion. In some circumstances, where having a DNACPR in place would impede the care of the patient, the clinical team may choose not to implement the decision immediately, in order to give the patient and their family time to come to terms with the terminal nature of their condition.

Mental Capacity

Individuals have the right to make unwise decisions. There is always be a presumption of capacity which can only be rebutted if there is evidence of an impairment/disturbance of the functioning of the mind or brain which leads to an inability to comprehend, retain, weigh up and/or communicate a decision. If an individual is deemed not to have capacity for a specific decision, then unless the person has an LPA or valid and applicable ADRT (see Advance Care Planning chapter), the best interests framework should be used to reach a decision.

Treatment can only continue if it is felt to be in the person’s best interests. Family or those close to the patient must be consulted - if the patient has no-one to advocate on their behalf an independent advocate (e.g. IMCA) should be consulted. Best interests encompasses more than evidence of efficacy - it includes an assessment of the cultural and religious beliefs of the person, and the views of close family and friends about what would be important to the person. Considerable weight must be given to the least restrictive option. If the medical team and the family disagree then an independent second opinion should be sought. If there is still disagreement then the matter may be taken to The Court of Protection for a decision. The Court will decide if there is justification to continue treatment.

Only treatment which is in the person’s best interests can be justified. The decision is not whether it is lawful to stop treatment, but rather whether there is lawful justification to continue treatment.

Resources

• Beachamp T, Childress J. Principles of Biomedical Ethics. Oxford University Press 7^th Edition; 2012.

Legal framework

• Human Rights Act 1998
• England and Wales: The Mental Capacity Act 2005
• Scotland: Adults with Incapacity (Scotland) Act 2000
• Northern Ireland: Mental Capacity Act 2016

Codes of practice

• Scotland
• Northern Ireland
• England and Wales
• Resuscitation Council (UK) Do Not Attempt CPR Guidelines