The Royal Australasian College of Physicians (RACP) has published a Position Statement on ‘Improving Care at the End of Life: Our Roles and Responsibilities’. The Statement highlights some of the problems in end of life care, including a ‘death denying’ culture:
Evidence shows that, too often, patients’ wishes about their medical treatment at the end of life are unknown by their doctors and/or families. One reason for this is that our culture is predominantly ‘death denying’. Discussing death and end-of-life issues may be uncomfortable and is sometimes taboo. In a 2015 RACP survey, less than one in five respondents agreed that most of the time doctors know the patient’s preference regarding end-of-life care.
Modern medical care tends to focus on curing, and restoring, which may sometimes conflict with accepting death as a natural event. Like the population, physicians and other health professionals have diverse backgrounds and levels of experience with end-of-life care, and some may feel they have a duty to prolong life at all costs and/or see death as a medical failure. For others, they may not realise their patient is nearing or at the end of life until very late.
Furthermore, fragmentation of care and lack of communication may mean that health professionals are unclear as to whose role it is to discuss end-of-life care with the patient. There may also be a perception amongst some health professionals that palliative care and end-of-life discussions are less relevant or more difficult to broach for patients with non-malignant diseases, such as dementia, frailty, neurodegenerative disorders, and progressive cardiac or respiratory failure.
The Position Statement sets out five elements that the RACP believes are essential for the provision of good patient-centred end-of-life care:
- Diagnosing dying or the risk of dying
- Respecting patient autonomy and supported decision making, and providing personalised care
- Ensuring that medical treatment decisions respect the patient’s best interests
- Managing symptoms
- Supporting carers and family/whānau.