Majority (70%) would want little or no medical intervention at the end of life, but most leave it too late to make their wishes known
“Too many people believe that decisions about their end of life can be put off, or left to their family or friends to make when the time comes, but the reality is that in the absence of an Advance Decision or Lasting Power of Attorney, these decisions are made by healthcare professionals.”
A poll commissioned by Compassion in Dying found that the majority would want little or no medical intervention at the end of life. More than half of adults (57%) would only want comfort care, 13% would want limited intervention, and just over one in ten (12%) would prefer all available treatment.
Almost half (48%) wrongly believe that family members have the right to make healthcare decisions on behalf of a loved one if they don’t have the capacity to make them themselves, and 22% do not know whether they have a right to or not. Worryingly, just 4% of the public have made their treatment wishes clear in an Advance Decision, and 4% have appointed a third party to make healthcare decisions on their behalf if they lose capacity.
This poll shows that most people know how they would like to be treated at the end of life, but the vast majority have done nothing to make these wishes known, or their decisions legally binding. This could mean that many people may be treated against their wishes at the end of their lives because of a seeming lack of awareness about how they can ensure that their wishes are respected. Compassion in Dying intends to continue to reduce this gap by raising awareness of these important issues.
The recent debate over the Liverpool Care Pathway (LCP) highlights the complexity of end-of-life care, and shows how much people care about how they and their loved ones are treated at the end of life. There is still a long way to go to ensure that dying people and their families are in control of their care and treatment at the end of life. This poll shows that once people know that they are dying, the majority would simply like to die well or with limited intervention – an outcome which the LCP was formed to achieve.
Danielle Hamm, Director of Compassion in Dying said:
“Too many people believe that decisions about their end of life can be put off, or left to their family or friends to make when the time comes, but the reality is that in the absence of an Advance Decision or Lasting Power of Attorney (LPA), these decisions are made by healthcare professionals. In best practice doctors or nurses will consult family members, but ultimately, in the absence of legally binding treatment decisions, it is the healthcare team who must decide what they believe to be in the best interests of the patient - and that may not always be the treatment the patient would have chosen.
“This poll shows that most people have clear preferences about what treatment they do or don’t want at the end of life, but startlingly few people have made those preferences clear in Advance Decisions, or have appointed a Lasting Power of Attorney, and this needs to be addressed.
“On the whole those polled wanted limited or no medical intervention at the end of life. These values are mirrored in what was the LCP. I hope that whatever alternative to the LCP is created in the coming months will allow space to provide for those same values and respect that most people, when dying, want to be allowed to die without intervention, and with their own preferences at the heart of their care.”
Sandra Williams’ mother made her end of life wishes known:
“My mother had a very peaceful and dignified death, thanks to the advance decision she made while she was still able. Her wishes were respected by the healthcare professionals who treated her in her last days.
“I am confident it was the best thing my mother could have done to make her wishes known to friends, family and medical staff. It is imperative to do this when we are fit and able to make important decisions before it is too late. I would say my mother had a good death with no regrets whatsoever because of the steps she took. ”
Terry Collins thought that he could make decisions on behalf of his mother and urges people to take control before it’s too late:
“My mother was admitted to hospital at the end of her life. The hospital team trying to do everything they could to help told me that they could keep her hydrated and that there was a possibility of intrusive medical treatment. I knew my mother was dying and realised I was powerless to carry out her wishes; she wouldn’t have wanted to suffer needlessly at the end for the sake of it.
“Luckily the medical team realised this and instead tried to keep her as comfortable as possible for her final weeks and days. This made me realise the importance of recording your own end of life wishes; you shouldn’t leave it up to chance because without an Advance Decision or Lasting Power of Attorney your care is left to the discretion of a doctor, not your friends or family who know you best, nor even yourself.”
Read about this research on the Guardian
See the results from YouGov here
