Managing symptoms at the end of life
Effective communication between health professionals, carers and patients is important when caring for someone at the end of life. We know that the final weeks and days of life can be particularly stressful and upsetting for carers, especially when they feel like they do not have the support they need from health professionals.
To understand which symptoms are most problematic for carers, the Marie Curie Palliative Care Research Centre at Cardiff University has undertaken a study analysing which symptoms carers perceive as being less well managed by healthcare professionals at the end of life.
The researchers’ findings highlighted pain, breathing difficulties, nutrition and hydration as key areas of concern. Issues around nutrition and hydration in particular demonstrate the importance of communicating the practicalities of the dying process to carers. These conversations about what a carer should expect are essential. Carers in the research describe how nutrition and hydration became sources of great anxiety for them, particularly when health professionals recommended the denial of food and drink.
In terms of pain and breathing difficulties, it is not difficult to understand why carers would find these symptoms highly distressing. Some participants in the research commented that they felt their health professionals lacked the competence or confidence to tackle pain and breathlessness, and that they felt powerless to help their loved ones. Others felt that in some cases health professionals were not giving enough credence to their concerns that their loved one was in pain, particularly when they were no longer able to communicate verbally.
This underlines the importance of having the right expertise available for end of life care, giving carers the assurance that everything possible is being done to make their loved ones comfortable and ensuring that they feel that their concerns are being given proper attention. This is particularly important outside of hospital, where carers can be left feeling isolated and unsupported (particularly overnight, when the availability of services may be reduced). For this to happen, we need health professionals with appropriate training who can take the time to speak to carers and understand their specific concerns and needs.
The Marie Curie Nursing Service is one of the specialist services available in the community to offer this kind of expert, individual support, sending experienced nurses into peoples’ homes to give them the care they need in the place they want to be. However, Marie Curie’s nurses are only part of the picture across the UK. Having proper end of life support available for everyone outside of hospital will require government to get to grips with the importance of community care and ensure that it is properly resourced.