“As families, patients, and healthcare workers, we all face difficult choices — ethical guidance helps us make them with understanding and care”

It is Ethics Awareness in the first week of November and this year the focus is on the ethical issues that arise in end-of-life care. It’s something we can all reflect and prepare for as healthcare workers, families and patients.

Ever since Ancient Greece 2,500 years ago, philosophers have urged us to think about death without fearing it. Epicurus wrote: “Death is nothing to us. When we exist, death is not; when death exists, we do not.”

Wise people, he suggested, steady their nerves by reflecting that mortality is a universal law. Two thousand years later, Ludwig Wittgenstein wrote“ “Death is not an event in life.” Why should we fear what we cannot know, because no one has experienced it?

Dying is another matter. It is a lived experience which holds unique significance for patients, their loved ones, and for clinical staff and carers. Ethical questions that accompany us from childhood also intensify in the last phase of life. Such questions turn on the right ways to treat other people and ourselves, the obligations of love and commitments to family and society. In this last phase of life, when fundamental decisions can no longer be postponed, the ethical stakes may be higher than ever.

End-of-life care emerged as a field of clinical medicine after surveys in British hospitals in the 1950s confirmed that inadequate conditions and practices caused needless distress to terminally ill patients. Discoveries in pharmacology created new ways to reduce pain, while some lessons as old as humankind had to be learnt anew in modern institutions. For example, when medical staff listened to patients and were more open with them, suffering could be eased and personal identity restored.

Modern end-of-life care is about managing patients in the decline that occurs during the last days, weeks or months of life. Some patients cannot be cured; others are dying despite advances in knowledge and technology. In all circumstances, care is based on four universal ethical principles: autonomy (respect for patients’ right to make informed decisions); beneficence (acting in their best interest); non-maleficence (avoiding harm); justice (equitable treatment).

Adults with mental capacity can work through ethical dilemmas in end-of-life care through informed consent, and preparing an advance directive should they lose capacity to make decisions themselves as well as naming a power of attorney.

Difficulties can result from disagreements between patients, families and clinical teams about treatments that are no longer beneficial, about do-not-resuscitate orders, or from the assessment of capacity in patients with dementia. Such problems also arise for patients without mental capacity, and especially for children, making this process even more complicated.

These are among the most complex and ethically difficult tasks that doctors and clinical teams can face.

Clinicians approach making decisions about end-of-life care through ethical questions around the dignity, respect, comfort, quality and meaning of life in a patient’s final stage. Care should be people-centred, addressing emotional, physical and spiritual needs. It should be based on decisions by patients, with their family or carers and the clinical teams. These decisions should follow honest communication about the patients’ condition, prognosis and management plan, in the light of ethical reasoning and up-to-date medical evidence.

End-of-life decisions are rarely easy for anyone involved. However, we can use ethical decision-making and processes to establish a positive approach in this crucial part of a person’s journey.

There is help for patients, families and clinicians, who can request a consultation from the BHB ethics committee, whether you are struggling making decisions at this challenging time, or find yourselves in disagreement with each other or the clinical team. An ethics consultation can be requested by emailing ethics@bhb.bm, and members from the committee will help by supporting the decision-making process and providing advice.

• Sanja Malbasa-Thompson, a consultant geriatrician at King Edward VII Memorial Hospital, is chair of the Bermuda Hospitals Board ethics committee. You can find out more about the committee on the BHB website atbermudahospitals.bm