Planning for the end of life

Planning for end of life using Advance Decisions, LPAs and Advance Statements is so important 

Why should someone plan ahead for their treatment and care?

If a time comes when your parent can no longer make their own decisions, you could be left guessing about what they might want. However, if they have written down their wishes for their future care and treatment in advance, you can rest assured that their wishes are known to you and can be respected. Most people think that they have the legal right to make a medical decision on behalf of a loved one if they lack capacity (the ability to make a decision), but this is not true. If your parent loses capacity and has not made an Advance Decision or a Lasting Power of Attorney, then decision-making power lies with their doctor. They have a duty to make decisions in your parents’ best interests, but there is no guarantee that what they decide is actually what your parent would want.

So how can people plan ahead?

You don’t have to be near the end of life to plan ahead. Anyone with feelings about how they would or would not like to be treated and cared for should make an Advance Decision (Living Will), Lasting Power of Attorney for Health and Welfare or Advance Statement.

• An Advance Decision (Living Will) allows you to record any medical treatments that you do not want to be given in the future. It will only be used if you cannot make or communicate a decision for yourself. You can use an Advance decision to refuse any treatment, including life-sustaining treatment such as CPR or breathing machines.

• An Advance Statement is a general statement about anything that is important to you in relation to your future treatment and wellbeing. You can use it to express your preferences for care or to detail any values or beliefs which inform the decisions you make. You can also use it to explain other things that are important to you, such as any hobbies, whether you prefer a bath to a shower, or things you dislike.

• Lasting Power of Attorney for Health and Welfare (LPA) allows you to give someone you trust the legal power to make decisions about your treatment and care if you lack capacity to do so yourself.

Most people find that thinking about, talking about and planning their wishes for treatment and care:

• Helps them make informed decisions in their own time
• Gives a sense of control and peace of mind
• Helps their loved ones to feel involved in their care
• Makes sure that family members aren’t left guessing what that person would have wanted if doctors ask them to help make a decision

You can make an Advance Decision or an Advance Statement online for free at www.MyDecisions.org.uk – “It may sound silly but I decided I wanted to complete an Advance Decision when I had a near miss with a car when I was crossing the road. It made me think ‘what if I ended up in hospital with a brain injury or illness, my loved ones and doctors have no clue what my thoughts are about my treatment’. That would be terrible for me but heartrendingly difficult for them. I found the www.mydecisions.org.uk website incredibly simple to use. It explained what conditions I might experience which would mean I couldn’t communicate my wishes to my doctor and it gave me options I could tick to say in what circumstances I might want to refuse treatment, some of which I’d not thought about before. Through just filling out the website I now have a clear and legal document without the hassle of having to talk to a lawyer or a doctor first. I’ve shared it with my family and doctor and now feel wholly reassured that should something happen to me my wishes are known and will be respected.”

Compassion in Dying contacted by many different people, each with their own story.

Jenny’s story – Jenny and her father made their Advance Decisions together, so she was aware of his wishes when the time came:

“Five years before my father died aged 91, he and I spent time together filling in our Advance Decisions.  That conversation helped me to understand his wishes.  When he was admitted to hospital the last time I made a point of telling every health professional that he had made an Advance Decision and that he was now so weak and ill that he just wanted palliative care.  Not one person tried to argue with me and my father slipped away less than 24 hours later. Having an Advance Decision gave me the confidence, determination and, ultimately, the authority to ensure my father’s wishes were respected.  I was so grateful for that.”

Frank’s story – Frank’s mum had dementia and was taken into hospital following an accident.  The doctor decided to operate, despite Frank telling medical staff that their mother did not want surgery. Sadly this story shows what can happen if you do not document your wishes:

“The doctor’s decision left us all feeling very upset and angry.  Before dementia set in Mum had told us many times that she did not want surgery at any cost.  It seemed to us at the time that our views were being deliberately ignored and, because we were trying to convey the strongly held wishes of our mother, this was deeply upsetting.  We understand now that legally we could not make decisions on behalf of our mother. ”

Support

For more information or support please contact our free Information Line on 0800 999 2434 (open 10am-4pm Monday to Friday) or email [email protected]. You can download any of our forms or publications from http://compassionindying.org.uk/library/, or contact the Information Line to be sent a paper copy.