Death and dying is a subject many people feel uncomfortable talking about – but as a nurse, clear and compassionate communication is essential, not only to establish the dying person’s priorities and type of care they wish to receive, but to help support them to make informed decisions.
‘Talking openly about death has the potential to make it easier to deal with and gives the patient and their family the opportunity to explore any fears and anxieties they may have,’ says Cat Sullivan, a Palliative Care Clinical Nurse Specialist with more than 25 years’ experience of general nursing.
One way to approach the subject is to discuss planning for the worst while also hoping for the best. For example, you might ask: “If we could not help you get any better and in fact you became worse, where would you like to be cared for/what would it be important for us to do..?”
How to answer: “am I dying?”
One of the most difficult questions for a nurse to hear is, “am I dying?”
‘My answer to that varies depending on the person and the circumstances,’ says Cat. ‘The recommended approach is to reflect the question back in as gentle a way as possible. For example, you might say “what makes you ask that?” or ask what the doctor has already told them.
‘There are times when I’ve said: “Yes, it won’t be long now,” after I’ve got to know the person well and am confident in my assessment and can feel sure they are safe in that knowledge. For some patients, uncertainty is worse than any physical symptom.’
Ignoring the question is likely to make matters worse.
‘Sometimes inexperienced nurses can subconsciously tilt their head and dismiss the question but that’s not helpful,’ says Cat. ‘Having said that, I would never encourage a junior nurse to be categorical in their answer. Diagnosing death is complex and you don’t want to get it wrong.’
If you can’t answer the question, tell the patient that you will ask a more senior member of staff to speak with them. ‘End of life care is always a team effort. If you’re ever in doubt, consult with the wider team,’ advises Cat.
During the final hours
In the final hours, relatives may wish to be with their loved one as much as possible. Encourage family and friends to create an environment that is familiar and pleasant to the patient, for example, surrounding them with the things and music they like, and including them in everyday conversations.
‘In the final few hours, talk to the patient gently. You don’t want to talk constantly. Watch for cues that the person wishes to talk, and give them as much time as they need in order to speak,’ says Cat.
Nonverbal gestures, such as holding the patient’s hand, can be the best way to communicate. If the patient is unconscious, speak to them as if they are aware of what’s happening. ‘Hearing is one of the last senses we lose, so always presume they can hear you, even if they’re unable to respond,’ adds Cat.
Families can sometimes become more distressed as their loved one’s ability to communicate diminishes. Encourage relatives to express the things they need to say to their loved one, or communicate through touch by holding their hand.
‘Make sure that the patient and relatives know and understand what’s happening as much as possible, and check to see if there are any individuals who need additional support within the family. You also want to make sure the family is taking care of themselves. If relatives wish to stay at the side of their loved one, I sometimes suggest a rota system for visiting, so they can get some rest,’ adds Cat.
Sometimes, it may seem that a patient may be waiting for permission to die. It can be appropriate to gently let family members know they can give their loved one permission to “let go”. You could suggest they say: “We love you. We will miss you, but we will be OK.”
Nonverbal gestures and small acts of kindness are often remembered by bereaved families, even when they can’t recall what was said. Putting an arm around a relative, sitting with them in silence for a while, or making them a cup of tea, are all ways to offer emotional support.
A “good death”
As a nurse offering end of life care, the aim is for a patient to have a “good death”, but what that means differs for us all.
‘For some people, a good death is a fast one, for others it’s dying in their sleep. It might mean having all their loved ones around them, having candles in the room or a favourite piece of music playing. For some, it’s knowing their will is in order and they’ve completed any unfinished business,’ says Cat.
‘I tell patients: “I’m here to help make sure things happen as you would like.” My role is to help empower the person, so that their death is the best it can be.’
The best way to ensure that you’re not working to your own agenda, but are acting in accordance of the wishes of the patient, is to check with the person and your colleagues in the healthcare team.
A team approach
While many nurses feel ‘privileged’ to be able to help a person and their family through such a major event, the death of a patient is always going to have an emotional impact. If you’re a newly qualified nurse and wondering how to handle things emotionally, Cat’s advice is to spend half a day with the palliative care team or an experienced senior nurse, in order to build your confidence and resilience.
‘Taking care of a patient who is approaching the end of life requires a team response. Firstly it can be emotionally straining, and secondly the needs of the patient are best met in a multi-professional way, for example using the occupational therapists to enhance the environmental aspects of care alongside nurses and doctors who can ensure that the symptom control aspects of care are met.
‘If you’re finding it hard emotionally, look to the team for support. Reflect on the things you did well and take comfort and pride in yourself as a nurse, knowing that you helped that person and their relatives to the very best of your ability.’
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