Death and dying is relevant to everyone and is being discussed more openly than ever before.So I was intrigued when I was asked to chair the Working Group being set up to review the GMC’s guidance on end of life care, but I had no idea what to expect.
The process has been fascinating and I have learned a great deal about the issues and about the professions that provide care for patients nearing the end of life. I have been deeply impressed by the commitment and care of the medical profession and the sensitivity and thoughtfulness shown by doctors, nurses and others working with patients who are approaching the end of life.
One of my key interests was in the issues of equality, dignity and respect for the individual — the principles at the heart of human rights. These themes run through the guidance. They are an essential component of good care and make a significant difference to patients’ experience and comfort at a time when they may otherwise be suffering distress, anxiety and fear. A good start in respecting patients’ human rights lies in listening to their concerns, fears and wishes and in providing opportunities and openings for patients to raise issues which they find difficult to address openly.
In fact, good communication with patients, with their families and others close to them, and with the rest of the healthcare team, has emerged as a key to providing good care.
It lies at the heart of advance care planning, of assessing what is of overall benefit to patients who no longer have capacity to decide for themselves, and of providing effective treatments and care where many teams, specialists and carers have to work together.
Communication needs to be backed up by a sound understanding of the legal and ethical principles that underpin the care and treatment as patients’ lives draw to a close. Of course, these issues also relate to the values and beliefs of patients, doctors and other health professionals and generate firmly held views which are not always compatible with each other.
In the consultation we received views from a wide range of individuals and organisations. These included major world faiths, patient groups, medical organisations, charities and others.
The final guidance sets out core principles on which there is a broad consensus in our society. We also discuss how these principles should be applied in some of the most difficult and sensitive areas, for example, in making decisions about providing nutrition and hydration by tube or drip; making decisions about when attempting CPR would or would not be appropriate; and making ‘best interest’ decisions about neonates.
In the end, however, guidance can only go so far. Doctors and other healthcare professionals have to make judgements, based on the particular circumstances of the patient, taking into account both the clinical issues and the patients’ wishes and preferences.
The guidance does not try to limit or restrict doctors from making those judgments, but recognises the importance of individual clinical and ethical judgments in providing care.
At some time we will all rely on the knowledge, skills, compassion and judgment of our doctors. The guidance is intended primarily to support doctors by helping them to approach issues and make decisions within a clear framework of principles, which are ethically and legally accepted within our society.
Lady Christine Eames chaired the working party which drew up the guidance document Treatment and Care towards the end of life: good practice in decision making