I’ve worked in end of life care for 23 years – here are the surprising things I’ve learned about death
A palliative care nurse has revealed the surprising things she has learned about death and dying after working in end-of-life care for 23 years.
Jan Palmer, 64, a Marie Curie nurse based at a hospice in Cardiff, will retire on Christmas Eve after 42 years in the role.
During her time in palliative care, Jan has worked with hospice patients, providing emotional and clinical support through the free helpline for those living or caring for someone with a terminal illness.
Despite challenging moments in her long career, Jan says she has ‘never’ considered leaving the role and has been ‘heartened by it’ since day one, when she first entered the hospice in 2002.
In an exclusive chat with FEMAIL ahead of her retirement, Jan has revealed the surprising things she has learned about death and dying.
Contrary to popular belief, Jan said she has “seen more good deaths than not” and that her time in palliative care has “absolutely” brought her more peace of mind about her own death.
She said: ‘The death of an individual can look so different. But I firmly believe that with the right support, the vast majority of us can have a good death.
“The audience doesn’t necessarily know what it might 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 has learned about death and dying
‘It is a very natural process, the dying process, and you really don’t have to be afraid of that. It’s normal to be afraid of it because we don’t always have the right information and we’ve never had an open conversation with someone.
“But the vast majority of people die peacefully. Many people believe that all deaths are painful, but that is absolutely not the case. In my humble experience, I have actually seen more good deaths than not.”
Jan said that one of the first things that happens when someone is about to die is that they lose their ability to swallow.
This may mean they can’t keep the medications down, but nurses can usually help by moving them around to prevent saliva from building up.
If this doesn’t work, it may be time to introduce a syringe driver: a small, battery-operated pump that can continuously deliver medication under the skin.
A common misunderstanding is that syringe floats are only used at the end of life and hasten a person’s death.
But Jan emphasized that they can be used for symptom management at any stage of the disease and that introducing them does not necessarily mean someone will die. It is even possible for someone to move away from the syringe driver and back to other medication methods.
Similarly, many people think palliative care means you are about to die, but in fact it is about promoting a good life, and can be involved at a very early stage.
Jan, 64, says she absolutely loved her job and never considered doing anything else
Marie Curie palliative care nurses support all kinds of terminal conditions, not just cancer, but also motor neuron disease (MND), heart disease, kidney disease and even cognitive disorders, including dementia and Alzheimer’s.
In addition to loss of swallowing ability, signs that a person is nearing death may include sleeping more, being drowsy, restless or agitated, changes in breathing patterns, blotchy skin, and breathing less.
These are all part of the natural process of dying.
To help someone feel comfortable in their final days, nurses use music, TV and bringing in 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 simply being with someone and giving them a voice during this time is one of the most important things you can do.
She said: ‘I always give the person I meet a chance to talk. It’s about what matters most to them: giving them a voice to listen.
“Listening is the biggest part of my role and it’s so powerful because that person may never have had the opportunity to tell their story.
‘Whatever people’s beliefs are, if it gives them comfort at the end of life, it is what the patient says it is. For me, the dying process is spiritual and it is allowed to be present. It’s a privilege to be with that person.
‘I’m a scientist and I love evidence, but ultimately that doesn’t mean it isn’t there. We can all have those values, and I like to think of myself as a spiritual person.”
The most frequently asked questions Jan receives on the support line are ‘Am I going to die?’ and ‘how long do I have?’
Part of the role involves speaking to patients and relatives on the Marie Curie Support Line
Jan tries to personalize her answers in any case, but knows that she has to be prepared for anything
Jan says her answers are “personal” to each case, and she will gently approach topics such as where they would like to die and considering an advanced care plan.
She can also recognize if she is dealing with an emergency, such as sepsis, and refer it to someone who can help.
She added: ‘Often the callers know the answers, but feel more comfortable passing it on to someone else.
‘You have to be prepared for everything. The majority of people die peacefully, especially with good symptom management. Everyone has the right to good end-of-life care, and I have seen what that should look like.’
Jan can help demystify the process, especially when it comes to symptom management.
Speaking about her upcoming retirement, Jan confessed that she has “mixed emotions.”
She said: ‘I don’t know if I’ve ever seen myself retiring, if I’m honest, I’ve been breastfeeding for almost 42 years and I love my job. It was the most enriching, powerful experience. I loved every moment.
‘I wanted to be the nurse someone would want at their bedside when they were dying. For me, that was absolutely what it was about.”
Jan said the “best feeling” of the job is “the feeling at the end of the day that you have done your very best and hopefully made a difference, no matter how small, in someone’s life.”