Whether or not assisted dying is legalised, we urgently need to improve palliative and end of life care for all dying people, across the UK. Marie Curie is campaigning to make sure the next government makes it a priority.
There's an important, ongoing debate about whether or not assisted dying should be legalised in the UK. The debate is highly emotional, complex and deeply personal. There are lots of different points of view based on individual beliefs, circumstances and experiences, and many compelling arguments both for and against a change in the law.
But standing apart from this debate is the fact that far too many people currently miss out on the care and support they need towards the end of their life – dying in avoidable pain, in poverty and alone. Right now, services and staff are stretched to their limits, and carers and families often don't know where to turn for help.
Marie Curie takes a neutral position on whether assisted dying should be legalised, but we're far from neutral on the critical need to improve palliative care so that no one suffers because they're unable to get the care they need.
The Government must act urgently so we aren't neglecting to address the needs of every dying person, and supporting those caring for them, regardless of the ongoing assisted dying debate. This means putting in place a national strategy for palliative and end of life care, improving funding to end the postcode lottery in access, and improving financial support for dying people to end the indignity of poverty at the end of life.
If you're living with a terminal illness or supporting someone who is, and you've been affected by the issues being raised in the assisted dying debate, please know that Marie Curie is here for you. You can speak to us about any worries or concerns. Call free on [0800 090 2309](tel:0800 090 2309)*, book a call or email us.
*We're open 8am – 6pm Monday to Friday, and 11am – 5pm on Saturdays. Calls are free from landlines and mobile phones. Your call may be recorded for quality and training purposes.
What does a 'good' end of life look like?
It's only natural for people to worry about the end of life. That's why people call us and why we care for people when they're dying. But we know from 75 years of experience that there is such a thing as having the best death possible.
A 'good' death means having the right care, support and systems in place, so you feel protected and safe, and your carers and loved ones understand what support is available. It's different for everyone, as it depends on what matters most to you.
It means the right pain and symptom management and medical care to help you live as well as you can, in line with your wishes. It means emotional and spiritual care to help you feel safe and supported. It means ensuring you have enough money not to have to worry about the basics like putting food on the table or turning on the heating. And it means a smooth and joined-up experience of the health and social care system, so you can focus on the important things at the hardest of times.
It could mean spending as much quality time as possible with your loved ones and friends. It might be the physio support to do an activity you love, when you didn't think you could. Or being in the place you call home as you take your last breaths, with your favourite people and pets you by your side.
When I'm meeting with our hospice care teams, I often hear examples of what this means in practice. For example, the story of a young woman with a terminal diagnosis who was able to get home from hospital with the right care, pain and symptom management in place, so that she breathed her last sitting in a chair in her own garden while her favourite song played.
But I also hear the stories of people who miss out on the care and support they so desperately need, such as a man who found himself in debt trying to pay for energy to heat his home, as his condition meant he stiffened up and was unable to use his hands if he was too cold.
Ninety per cent of the population will need palliative care
We know the international evidence suggests that, if assisted dying was legalised, a very small minority of us would choose this path. Meanwhile ninety per cent of the population will need palliative care in their last months, weeks and days of life. It's a pressing need that will affect the vast majority of our population.
For all of the work that Marie Curie does, there are too many people not getting what they need now, meaning they are dying frightened, alone and with avoidable symptoms. Stressed and exhausted families often don't have any help or know where to turn to for help. No one should be dying like this, and no family member should see their loved one go through this.
People are dying in the back of an ambulance or in an emergency department following an unnecessary admission to hospital, when they'd prefer to be at home where they feel safest and most at peace. For many tens of thousands of people, a terminal diagnosis means being pushed into poverty – with people from ethnically minoritized groups and those unlucky enough to become terminally ill in working age disproportionately affected. Without family or friends around them, many people face dying alone – with no one to care for or support them at a very vulnerable time.
These problems are only going to grow in coming years unless we act now. It's estimated that in the next 25 years, need for palliative care will rise by 25% – around 122,000 more people each year. There is no realistic plan in any one of the four UK nations that should give us any confidence whatsoever to address this scale of challenge.
What needs to happen next?
The Government need to take urgent action to address the crisis in palliative and end of life care, and in particular to do three things.
Firstly, we need to improve Government funding for palliative and end of life care services, in order to reduce the reliance on charitable donations, and end the postcode lottery in access. Despite it being an explicit legal requirement to commission palliative care services in England, it isn't funded sustainably, with charities, like Marie Curie, having to fundraise to provide essential care.
Secondly, we need a national strategy for improving palliative and end of life care - a realistic plan to ensure that everyone has access to the support they need at the end of life.
Finally, we have to make sure no one's in financial difficulty at the end of their life. This means ensuring that those of working age can claim their State Pension and other pension age benefits and protecting everyone living with a terminal illness from high energy costs through targeted support.
The debate on assisted dying will continue – let's ensure that we aren't neglecting to address the basic palliative care needs of every dying person and support those caring for them, now. We need to get it right for ourselves, our loved ones, and everyone in the UK.
If you're living with a terminal illness or caring for someone and have been affected by any of the issues raised in this debate, we're here for you. You can call or chat to us. Call free on [0800 090 2309](tel:0800 090 2309)*, book a call or email us.
*We're open 8am – 6pm Monday to Friday, and 11am – 5pm on Saturdays. Calls are free from landlines and mobile phones. Your call may be recorded for quality and training purposes.