References

Hospicare. Annual report. 2016. https://tinyurl.com/vbddhgh (accessed 28 November 2019)

Florian V, Mikulincer M. A multifaceted perspective on the existential meanings, manifestations, and consequences of the fear of personal death. In: Greenberg J, Koole SL, Pyszczynski T (eds). New York (NY): The Guildford Press; 2004

World Health Organization. WHO definition of palliative care. 2012. http://www.who.int/cancer/palliative/definition/en (accessed 5 November 2019)

‘Put life into their days, and not days into their life’

02 December 2019
Palliative Care
02 December 2019
Volume 24 · Issue 12

Palliative care rejects the notion that people (patients) are just bodies affected by diseases that need treatment. Instead, the philosophy behind the practice of palliative care is recognising that people are human beings first, with a mind, body, spirit and emotions. These attributes are what make us who we are, and diseases ‘attack’ these fundamentals, resulting in both physical and psychological pain or distress. When patients lose control of their ‘being’, they tend to worry or become sad and angry, while fearing for their future existence. As a result of this, practitioners in palliative care also focus their care on relieving suffering to improve patients' quality of life.

While teaching in Nairobi, I came across this saying: ‘Put life into their days, and not days into their life’. Since then, I have wanted to look closely at its meaning. Numerous explanations of this quote can be deduced in relation to palliative care and its goals. For example, it highlights the need to ensure that patients' subjective quality of life is enhanced. At the core of this is the principle that life should not be lengthened or shortened (World Health Organization (WHO), 2012), but rather, every effort be made to improve the quality of life, so that the remaining months, weeks, days or hours can be comfortable. By extension, enhancing quality of life rejects the needless prolongation of life through futile attempts at treatment. Since true palliative care is about perceiving people as human beings and not a disease, all health professionals should seek to address the issues that concern their patients, and not just their condition. However, even the best palliative care cannot address all patient concerns, especially when patients feel like they have lost their integrity and that it is no longer worth staying alive. Obviously, this is a sensitive topic, as it prompts debate about assisted dying, which is not yet legalised in the UK and many other Western countries. It can be argued that those who seek assisted dying or even euthanasia subscribe to the ideals of the quote above. They no longer believe that putting days (quantity) into their life is of value, as the quality of life during these added days is poor. In a way, we could argue that we should always ensure that patients continue to live and not exist, and this is captured succinctly through the words of Dame Cicely Saunders: ‘You matter because you are. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die’ (Hospicare, 2016).

What health professionals, including community nurses, need to do to enhance life in dying patients' involves, but is not limited to:

  • Controlling and managing distressing symptoms, such as pain, fatigue, anxiety and nausea/vomiting
  • Paying special attention to the psychological needs of patients and those deemed important to them. Sometimes, a single problem, for example, pain, can worsen a patient's anxiety levels, and controlling it helps manage the anxiety
  • Caring for the patient's relations, as this helps to calm the patient and minimise their worries; it can even lead to a peaceful death. By extension, relatives witnessing a peaceful death may experience a less difficult bereavement phase.

    • Compassionate care through communication reflect the health professional's empathy for the patient. For this to happen, the health professional should understand how much information the patient needs and when to share it. It is likely that patients will ask difficult or sensitive questions, and it is in the ethos of palliative care to answer these with honesty and sensitivity. It is because of this that community nurses and other health professionals need to continue to develop advanced communication skills, particularly the ability to listen actively, as is also mentioned in the Bible: ‘Be quick to listen and slow to speak’ (James 1:19-27, King James Bible).

    While they cannot change the patient's situation (that they are dying), community nurses can show compassion through their care. It is not what they say, but how they say it, that conveys dying patients' concern over the loss of their bodily integrity (Florian and Mikulincer, 2004).

    Finally, palliative care need not, and cannot, be a panacea; instead, it should be integrated into existing services, and more importantly, should be part of the care afforded to everyone who needs it. The certainty of death should be accepted and, with that, health professionals' efforts should be focused on achieving improved quality of life for all. Therefore, when cure is futile, let us put life into days and not days into life.