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Getting end-of-life care right

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We only get one change to get it right when a patient is dying and this was illustrated a few weeks ago in Nursing Times by Lesley Goodburn, who described her experience when her husband Seth died just 33 days after being diagnosed with pancreatic cancer.

Ms Goodburn noted that “People do forget the little things that mean a lot to the person who is dying and their family”. She has written a play based on the couple’s experiences to help nurses reflect on and improve the way they approach end-of-life care.

My own experience of a relative dying in hospital was characterised by the need for information and to understand why interventions were being carried out when they seemed to be futile.

I was reminded of my experience recently by a nurse who described some of the challenges of providing end-of-life care in hospital.

She was caring for an 81-year-old man who was dying of bowel cancer. He was in the final stages of life and the doctors decided - with the patient and his family - to discontinue active medical treatment including intravenous fluids. The family visited every day and clearly wanted what was best for their father. However, 24 hours after active treatment was stopped one of his sons expressed concern that the withdrawal of fluids would have an adverse effect. At that point his father was unable to make decisions about his care.

“When someone close to you dies you relive those last days for years afterwards”

When someone close to you dies you relive those last days for years afterwards so the team listened to the family and they reached a consensus: that the dying man should receive subcutaneous fluids. The patient was closely monitored for any signs of distress and he died peacefully the following day with his family around him.

It is incumbent on all of us to get end-of-life care right and two areas that cause considerable difficulties for families and health professionals is the administration of intravenous or subcutaneous fluids. If you have struggled with these issues you may find three articles in our archive useful.

“The authors point to a lack of a comprehensive evidence base on the subject”

The first looks at the ethical issues around continuous deep sedation without hydration at the end of life. The authors point to a lack of a comprehensive evidence base on the subject but note that when talking to relatives about hydration “it is important to tell [them] that declining oral intake is a natural part of the dying process, and that reluctance to give artificial hydration is not abandonment”.

Our second article looks at the use of subcutaneous fluids at the end of life and how to administer them. It reminds the reader that fluids should only be given if it is in the patient’s best interest and the authors stress the importance of interventions such as regular mouth care when a patient is no longer able to take oral fluids.

Our third article is a reminder that itching is a troublesome symptom experienced by some patients at the end of life which can have a negative impact on physical, psychological and social wellbeing. The article looks at the assessment and management of itching and demonstrates the importance of a holistic assessment and regular reassessment of nursing needs.

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