Home » I’ve worked in end of life care for 23 years – here are the surprising things I’ve learned about death

I’ve worked in end of life care for 23 years – here are the surprising things I’ve learned about death

by Marko Florentino
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A palliative care nurse has revealed the surprising things she’s learned about death and dying after working in end-of-life care for 23 years.  

Jan Palmer, 64, a Marie Curie nurse based in a hospice in Cardiff, is due to retire on Christmas Eve after 42 years in the role. 

During her time in palliative care, Jan has worked with patients in the hospice, and provided emotional and clinical support on the free helpline for those who are living or caring for someone with a terminal illness. 

Despite challenging moments in her long career, Jan says she’s ‘never’ considered leaving the role and has ‘loved it’ since day one, when she first stepped into the hospice in 2002. 

Speaking exclusively to FEMAIL ahead of her retirement, Jan has revealed the surprising things she’s learned about death and dying. 

Contrary to public belief, Jan said she has seen ‘more good deaths than not’ and that her time in palliative care has ‘absolutely’ brought her greater peace of mind about her own death. 

She said: ‘An individual’s death can look so different. But I firmly believe that with the right support in place, the vast majority of us can have a good death.

‘The public doesn’t necessarily know what it could look like, and that’s half the battle, if it’s demystified. Because I have the information, I feel comforted.

Jan Palmer has worked in end of life care for 23 years. As her retirement approaches, she speaks to FEMAIL about what she's learned about death and dying

Jan Palmer has worked in end of life care for 23 years. As her retirement approaches, she speaks to FEMAIL about what she’s learned about death and dying

‘It’s a very natural process, the dying process, and it genuinely isn’t to be feared. It’s natural to be fearful of it because we don’t always have the right information and we’ve never had that open conversation with anybody.

‘But the vast majority of people have a peaceful death. A lot of people believe that all deaths are painful and that is absolutely not the case. In my humble experience, I have truly seen more good deaths than not.’

Jan said that one of the first things that happens when a person is about to die is that they will lose their ability to swallow. 

This may mean they can’t keep down medication, but nurses can usually help by repositioning them to prevent a build-up of saliva.  

If this doesn’t work, it could be time to introduce a syringe driver – a small, battery-operated pump that can deliver medication continuously under the skin. 

A common misunderstanding is that syringe drivers are only used at the end of life and speed up a person’s death. 

But Jan emphasised that they can be used for symptom management at any stage of the illness and introducing one doesn’t necessarily mean someone is dying. In fact, it’s possible for someone to come off a syringe driver and back onto other methods of medication. 

Similarly, a lot of people think palliative care means you’re imminently dying, but in fact it’s about promoting living well, and can be involved at a very early stage. 

Jan, 64, says she's absolutely 'loved' her job and never considered doing anything else

Jan, 64, says she’s absolutely ‘loved’ her job and never considered doing anything else

WHAT DOES PALLIATIVE CARE INVOLVE?

If you have an illness that can’t be cured, palliative care will make you as comfortable as possible through support and symptom management. 

It becomes available when you learn you have a life-limiting involvement and can be introduced at any stage. 

End of life care is the form of palliative care you receive when you’re close to the end of life. 

People are considered to be approaching the end of life when they are likely to die within the next 12 months. 

It can involve different health care professionals including hospital doctors and nurses, your GP, hospice staff and counsellors. 

Everyone is entitled to high quality care and you have the right to choose where you’d like to receive it and where you want to die. 

Source: NHS 

Marie Curie palliative care nurses support all kinds of terminal conditions, not just cancer, but also motor neurone disease (MND), heart disease, kidney disease, even cognitive impairment including dementia and Alzheimer’s

As well as losing the ability to swallow, signs that someone may be nearing death can include: sleeping more, being drowsy, being restless or agitated, changes to the breathing pattern, mottled skin and breathing less. 

These all form part of the natural process of dying. 

To make someone comfortable in their final days, nurses use music, TV and bringing in a person’s pets to help them. 

The cancer support charity has even launched a Spotify end-of-life music playlist, based on research into what matters most at the end of life.  

Jan says that just being around someone and enabling them to have a voice in this time is one of the most important things you can do.

She said: ‘I always enable the person that I meet to have an opportunity to talk. It’s about what matters most to them, to let them have a voice to listen.

‘Listening is the biggest part of my role and it’s so powerful because that individual may have never had an opportunity to tell their story. 

‘No matter what people’s beliefs, if it gives them comfort at the very end of life, it is as the patient says it is. For me, the dying process is spiritual, and being allowed to be present. It’s a privilege to be with that individual. 

‘I am a scientist and I like evidence but end the end of the day that doesn’t mean to say it’s not there. We can all have those values, and I like to think of myself as a spiritual person.’

On the support line, the most common questions Jan receives are ‘am I dying?’ and ‘how long have I got?’

Part of the role involves speaking to patients and relatives on the Marie Curie support line

Part of the role involves speaking to patients and relatives on the Marie Curie support line

Jan tries to personalise her answers in each case but knows she has to be prepared for anything

Jan tries to personalise her answers in each case but knows she has to be prepared for anything

Jan says her answers are ‘personal’ to each case, and will gently approach topics such as where they would like to die, and considering an advanced care plan. 

She can also recognise if she’s dealing with an emergency situation such as sepsis and can direct them to someone who can help. 

She added: ‘Often the callers will know the answers, but they feel more comfortable bouncing it off someone. 

‘You have to be prepared for everything. The majority of people have peaceful deaths, especially with good symptom management. Everyone is entitled to good end of life care, and I’ve seen how it should look.’

Jan can help demystify the process, especially if it’s around symptom management. 

Speaking about her upcoming retirement, Jan confessed that she has ‘mixed emotions’. 

She said: ‘I don’t know if I ever saw myself retiring if I’m honest with you, I’ve been nursing for nearly 42 years and I adore my work. It’s been the most enriching, powerful experience. I loved every moment of it.

‘I wanted to aspire to be the nurse that somebody would want at their bedside when they were dying. For me that was absolutely what it was all about.’ 

Jan said the ‘best feeling’ about the job is ‘the feeling at the end of the day that one has done one’s absolute best and hopefully made a difference, however small, in somebody’s life.’



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