‘Loss’ of the ability to eat and drink and its meaning to those close to the dying person

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58 year old man (Mike) attended hospital clinic with wife (Carol) for results of CT scan - had been referred by GP for enlarged liver- increased LFTs and feeling unwell - only 2 weeks since initial visit to GP - Consultant has called the palliative care clinical nurse specialist to assess whilst at the clinic and refer to local hospice...she arrives in the quiet room within the clinic - the clinic nurse had given them a cup of tea..they have been waiting about 10 minutes

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Use of name, not assuming first name appropriate
Adopting the SPIKES model -
E Empathy

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Common that not all information is remembered in the same way or understood by two people - the CNS is assessing all the time what their understanding is of this critical situation and trying to meet both needs whilst the patient is the priority Dilemma for the CNS - as the wife is asking a question that the patient may not have thought about or may not want to know the answer too

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Empathy, listening to the patient and assessing their different perspectives on the situation- and appreciating the consequences of not gently providing honest information.

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Empathy, summarising CNS understanding - useful phrase is "sounds like" when clarifying you have understood what has been said or referring to the impact of illness. Use of simple language

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Honest explanation of what to expect - clear plan
Families often get distressed at their loved one not eating - often causes conflict ( Bazian)

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Common that family members do not understand the reduced need or desire for food (Bazian report)

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Practical information is so helpful - show 7P's

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Reflection from survey "...continue to see it as an immense privilege to care for patients and their families at the end of life." ID 6383
Ensuring that they have a contact number to ask any questions that arise before the next appointment

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Overall Reflection
Challenging but common scenario for a CNS - this scenario demonstrates a supportive approach to what will probably have been a devastating communication re the results- "picking up the pieces" - the impact of this news on them and their family is overwhelming and may just be beyond comprehension - in that immediate aftermath of being told - their thoughts will be

When people are bereaved often the first story they tell is about the illness of their loved one or the events leading up to their death.

In the introduction to his book Love and Loss, Colin Murray Parkes writes that when the death of a loved is predicted we can grieve for their loss before it happens. He goes on to describe however that there is an important difference between the grief that comes before and that which follows death, observing that the grief which precedes loss intensifies the attachment and greater preoccupation that the relative has with the person who is dying.

Recognise the grief that comes before death.

This highlights the need for nurses to have an understanding of the stress and distress of relatives as they watch over a loved one who is close to death.

How a person will feel when they can no longer swallow to eat and drink is something that can cause anxiety to friends and relatives and also staff.

When we as nurses are aware of the importance of eating and drinking, with its biological, physical, social, emotional, cultural and spiritual relevance in life, it is perhaps easier to understand the impact on those closest to a dying person when the desire or ability to eat and drink in a way that sustains life is compromised by serious ill health and the process of dying.

In situations where a person has been coping with a serious or life threatening illness, meeting their basic needs for food and drink may have been a challenging aspect of the condition for the person and their family for some time. Perhaps artificial methods for maintaining nutrition and hydration were required to maintain their quality of life.

In contrast, following a short or acute illness that results in the person suddenly no longer being able to eat and drink unaided, the significance and meaning of this in terms of maintaining life will not be lost on those closest to the person.

In any situation or circumstance where it becomes apparent that a person is nearing the end of their life, nurses have the opportunity and responsibility to support discussions with the dying person, if possible, their family and clinical colleagues on the subject of nutrition and hydration.

Changing landscape of the dying process

The last days and hours of someone’s life is an ever changing landscape and regular review of the persons needs is required. Decisions to use or discontinue artificial hydration or nutrition should be based on what is best for the individual. When people are able to eat or drink a little by mouth they should be helped to do so and their wishes respected when they choose not to.

The process of ‘meaning reconstruction’ that grieving people go through after a loss to make sense of what has happened and their natural desire to create a ‘plausible account’ of such a significant event in life has been described by Robert Neimeyer. More information can be found in Loss and its Relevance to food and fluid at End of Life.

Making sense of what is happening

Before death we can contribute to how families make sense of what is happening around them and what may happen to their loved one as they die. Therefore communicating with those closest to the dying person pre-bereavement, in a way that helps them understand the loss of capacity to eat and drink as part of the dying process, is an essential component of compassionate care.

Sensitive exploration of their views, feelings and what they understand about the situation e.g. when artificial means of maintaining nutrition and hydration place a burden on the dying person and may no longer be in their best interests, acknowledges their special attachment to the dying person and will become part of the story of the days leading up to their loved one’s death.

The legacy that we leave with those left behind

The benefit to families pre-bereavement of the nurse in helping both the dying person and those close to them understand the situation as it evolves and caring for them with intelligence, insight and understanding will contribute greatly to the experience of relatives and how they will grieve after death for the loss of their loved one. This is the legacy of nurses to those we care for.