
The biggest (and most surprising) regrets my patients have at the end of their life
I am extremely passionate about palliative care; and helping people towards a 'good death' – one that's peaceful and dignified. But it's important to understand that palliative care isn't only about death itself. Much of my work is with those who are dying, and over the past six years, they have taught me invaluable lessons about life and what truly matters. I work with people of all ages, from 18 onwards, with a variety of diseases including cancer, heart failure, Parkinson's, and motor neurone disease. But while conditions, ages and life experiences may be very different, many patients experience similar insights as their life draws to a close.
Most often, I hear sadness about wasted time. People look back and deeply regret not making more time for important things, and not embracing each moment as it happened. We live in a society where everyone is in such a rush and we put so much pressure on ourselves to achieve big things.
At the end of life, people often reflect that it's so important to take that step back sometimes, and enjoy the smaller and simpler moments – being outside, walking your dog, taking the time to have a chat with a friend. They now absolutely value those times, and as a result, I've realised how important it is to be around for your children as they grow up. Don't miss sports day, or the school play if you can help it. My patients often remind me that time won't come back.
People who are dying deeply regret dwelling on arguments, too. Those petty disagreements or grudges they have been holding for years seem meaningless. Generally, people long to reconcile at the end of life. I see it so frequently – and those long-lost family members and friends will usually come and visit if they're asked. Re-evaluating things at the end of life gives you a different perspective on where things have broken down. Patients reflect deeply on past hurts and think 'actually I could have managed that differently', or 'why did I say that?' Nobody wants to die with regrets. It's very moving to see people who have finally reconnected before it's too late, and it's always very emotional for those involved.
Interestingly, I have had very little experience of people regretting health decisions they have made that they've enjoyed, like drinking or smoking. But I have heard many saying they wish they'd gone to their doctor when they experienced the first symptoms of an illness. They'll often say, 'I wish I'd just checked with the GP', or 'If only I'd gone for that smear test when it was offered'. It's so easy to put things off.
Patients most often want to talk about their emotional lives. Their marriages, children, families and friends are what really matter towards the end.
It can be really special to hear the whole story of people's lives, sometimes, things that happened more than 70 years ago, like how they met their beloved husband or wife. They always bring a smile because it's reminiscing about a happy time. But I also have people saying, 'I got divorced – if only I'd married my childhood sweetheart, it would have been different…' We do quite often hear people saying they wish they'd married their first love.
I have never once heard anyone say they wish they'd spent more time in the office or at work. And fortunately, nobody has ever admitted to committing a crime. I'm not sure I'd want to know!
Being a palliative care nurse requires great patience. A lot of situations are quite tricky to navigate, due to heightened emotions and grief, and we also need to have excellent listening skills, as our patients or their families might be telling us stories that they haven't wanted to speak about before. They're inviting us into their deepest feelings, which is such an honour. Sophie Brew and Fern Gowler both work for Sue Ryder (Supplied)
Sometimes, patients can be very angry, knowing they haven't long left, and feeling cheated of life milestones like having children, or enjoying the things they had envisaged to do in old age. But in my experience, giving them the time and space to fully explore those emotions and reminding them that it's OK to be angry or to feel deeply sad or bitterly resentful is vital. That's when we come together as a team and talk to them and their families, trying to find outlets that can help, whether that's through time outdoors, music they love, or just someone to listen to without judgment.
It can be hard to separate our feelings from the job sometimes. It's not like working in an acute hospital where everything is a rush – we make time and space to form a genuine connection. We get to know our patients and their families so well, we almost become part of the family ourselves. It's very upsetting when the patient I've become so close to dies, but I try to focus on the difference I've made to that family, and we have a great deal of workplace support.
The underlying issue for everyone is being recognised as an individual so they don't become a number – that they remain the whole person they are.
I now know, too, that end-of-life wishes are worth talking about long before it happens. It's a running joke in my house that I will always bring it up – but talking about the process of dying is not something to be afraid of. When families haven't spoken about it, I've seen how much of an emotional strain that can be on the relatives who are then left to guess whether their loved one wanted to be buried or cremated, or what their spiritual needs were at the end of their life. Ideally, we will help to facilitate those decisions and advocate for the patient, diffuse difficult situations and come to a compromise.
A peaceful death isn't dependent on faith. We have had patients of all faiths and none. Some ask us to open the window after they've died to release their soul, or they have special rituals they'd like us to follow. We have others who don't want to talk about what happens next, they don't want to think about a funeral, and spirituality isn't on their radar – they'd rather talk about the football. As long as it's calm and as they want it to be, it's a good death. 'We get to know our patients and their families so well, we almost become part of the family ourselves' (Getty/iStock)
Knowing your loved one has died peacefully can definitely help with the grieving process. Something as simple as us remembering special details at the end can greatly reassure the family that they had what they needed to be comfortable.
What matters most at the end of life is dignity. We always ask on admission, 'What matters to you?' Everyone will say something different; someone might want their favourite pyjamas, someone else might need a cup of tea every morning, but the underlying issue for everyone is being recognised as an individual so they don't become a number – that they remain the whole person they are.
People who have never witnessed a hospice death tend to fear dying as a chaotic, frightening process, the way it's depicted in TV dramas. I want to reassure them that it can also be dignified and peaceful, in a safe, loving environment. I will always see it as a true privilege if I can be a small part of that.
As told to Flic Everett.
Sue Ryder is here so no one has to face death or grief alone. For more information about its hospice care visit sueryder.org or search 'Grief Deserves Better' for free bereavement support
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