We're always interested to understand what motivates people to plan ahead for a time when they can't make decisions for themselves. In the second in our series of blogs featuring other organisations we work with, Usha Grieve from Compassion in Dying shares some insight relating to advanced planning for health and welfare decisions.
“At Compassion in Dying, we believe that everyone should get the care and treatment that is right for them at the end of life. We know that 82% of people have strong feelings about how they’d like to be treated or cared for at this stage – but what if, due to illness or accident, we became unable to communicate these wishes or make decisions about our treatment or care?
Despite our strong convictions, just 4% of us have planned ahead for this kind of situation. Fortunately, there are ways to help make sure you get the care and treatment you want.
- A Lasting Power of Attorney for Health and Welfare (LPA) allows you to give someone you trust the legal power to make decisions on your behalf in case you later become unable to make decisions for yourself.
- An Advance Decision allows you to write down any medical treatments that you do not want to have in the future, in case you later become unable to make or communicate decisions for yourself.
- An Advance Statement allows you to record your wishes, feelings, beliefs and values in case you later become unwell and need care or medical treatment.
Through our helpline service we speak to people every day about how they would like to be cared for and what they would like people to know if they couldn’t make or communicate a decision for themselves. They tell us about their hopes and fears for the future and what’s most important to them. Through talking to callers on our Information Line, we’ve learnt a lot about what motivates people to plan ahead and record their wishes for future treatment and care.
Motivations
Choice and control
Many of the people we speak to want to plan ahead so that they can have a say about their future care. People want to know their rights as a patient, so that they can make the choices that are right for them. One person who called our Information Line explained, “this is a no-brainer. I want to ensure things are dealt with on my terms – it’s very important to me.”
Making their wishes known
Another common reason people give for planning ahead is to make sure loved ones and healthcare professionals are aware of their wishes for treatment and care. For instance, one caller said "My mother hated hospitals and had begged me not to admit her if she became unwell. So I promised her ‘no hospital’ admission. The LPA allowed me to enforce this."
Taking the responsibility away from others
By thinking through their options and recording their wishes, people are reassured that those close to them will not have to make difficult decisions when the time comes. This was summed up by another caller, who said he wanted to plan ahead “to take responsibility out of the hands of my loved ones. They and the doctor will know what my wishes are and will be spared making terribly difficult decisions.”
Relieving their fears or worries
Many people tell us that they’ve planned ahead because they wouldn’t want to be kept alive when they have no quality of life. One caller said she had recorded her wishes in order “to avoid a situation where treatment is prolonged without the possibility of a meaningful life”. Others tell us they want to avoid possible pain or suffering, particularly if they have seen loved ones suffer at the end of life.
Another reason people give for planning ahead is that they’re fearful that doctors or family members might purposefully ignore their wishes, or be unable to make difficult decisions, if they don’t record them in a legally binding way.
Giving them peace of mind
Another important reason people plan ahead is to give themselves and those around them a sense of reassurance. Knowing that their wishes are recorded and known about means that they can get on with living now. One caller said they had recorded their wishes so that they could “get on with enjoying the rest of my limited life, for peace of mind for me and my family.”
Where does Compassion in Dying come in?
We’ve found that people who plan ahead are more likely to have a good death than those who don’t, so it’s really important to think about and record your wishes now.
If you have any questions or would like support to plan ahead, you can call us free on 0800 999 2434, or visit www.compassionindying.org.uk. You can also create an Advance Decision or Advance Statement for free online at www.mydecisions.org.uk and a lasting power of attorney online at www.lastingpowerofattorney.service.gov.uk"