Barack Obama and his wife have both made an advance care plan, also known as a ‘living will’. This may have contributed to the number of people making one in the US, with a rise from 47% to 72% in just 10 years*. Compare this with just 8% of people in the UK and it makes you wonder why we’re not taking control of the care and treatment we may need in the future.
Kim Shamash, former NHS consultant psychiatrist and author of Taking Control; A practical guide and tool for advance care planning, is passionate about enabling patients to make better informed choices about their care and to feel more in control of their decision making. Kim explains why we should all make an advance care plan now, and the potential consequences of sweeping it under the carpet.
1. You have seen what happens to others
We often don’t think about our future health until something happens to a loved one, or until we read about the plight of someone young who is affected by a progressive condition or a life threatening accident on the news. Ill health is an emotive subject, and it’s easier to leave those discussions about what you’d want to happen if you were to fall ill in the box. But studies show that patients who talk about their preferences for end-of-life care reduce fear and anxiety for themselves and their families. Simply knowing they have more ability to influence and direct their medical care, helps them believe their GP has a better understanding of their wishes.
If you’ve ever tried to help an ill relative or friend get the care that they want to avoid distressing or unnecessary procedures, you may have wondered what you can do to prevent being in the same situation yourself. An advance care plan can help you put plans in place for significantly better, more personalised treatment, saving distress, dissatisfaction and heartache in the future.
2. You have a long term condition
If you have a long term condition such as diabetes, cancer or a progressive neurological illness you may already have spoken to a doctor or nurse about what to expect as the condition progresses. You may wish to make an advance decision to refuse treatment in certain specific situations, just as Linda Bellingham bravely did last year. With an advance care plan you can also state any preferences about treatment options. If you lose capacity and you haven’t got an advance care plan in place then the decisions will be left to you next of kin. If you lose capacity and you haven’t got a Power of Attorney or advance care plan in place then the decisions will be left to those involved in your care in consultation with your next of kin - so it helps for them to know about any preferences.
3. You have just received a diagnosis of dementia
Although it can be difficult to think ahead it is best to do so when you have the ability to think and plan clearly for the future, especially since as you are likely to find this harder as the dementia progresses. This is the time to be thinking about any treatment preferences for other conditions you may have and to express any strong views about your future care including where you want to live and where you would like to be at the end of life.
4. Your health is at risk because of your lifestyle, weight or family history
You may be in good health but if you have a family history of heart disease, you are overweight, you smoke or drink more than the recommended daily intake of alcohol then you have a higher risk of conditions such as heart disease, strokes, diabetes and because of these also some types of dementia. It is a good idea to think about what you would like to happen should you suddenly become unable to make decisions about your care and treatment.
5. You enjoy an active lifestyle
If you enjoy activities such as skiing, water sports, paragliding, mountain biking or even hiking, you may wish to make an advance statement to cover what you would like to happen should you suddenly become unable to make decisions after a serious accident or injury. Even if you do not take part in dangerous sports it is worth bearing in mind that accidents can happen even to the most cautious.
6. You have strong views about future care and treatment
If you have strong views about any aspect of care and treatment it is a good idea to write these down so that others are better able to care for you if you do lose capacity. This could include preferences about your day to day routine such as what and when you like to eat, or something more significant like expressing a choice about types of treatment, as in the advice from the National Institute of Health and Care Excellence (Nice) chairman Prof David Haslam last year regarding patients seeing themselves as "equal partners" with doctors to get the treatment they need.
7. It may reduce distress for your loved ones
Statements recorded on your advance care plan can reduce the burden of responsibility for your family if they are consulted about difficult treatment decisions if you are no longer able to communicate. It can remove potential disagreements, where family members might have differing ideas about what is right for you. It can also reduce distress if you have strong wishes which conflict with what they would like for you. If you have discussed you wishes with your loved ones and made an advance care plan this will make it easier for them whether or not they have Power of Attorney.
Dying Matters have campaigned extensively for people to be in control of their own health care and their short video “I Didn’t Want That” aims to help people understand why making end of life wishes clear with an advance care plan is such a crucial topic we should all consider.
If you lose capacity to make decisions for yourself through illness or injury others around you will have to either decide or be consulted about what is best for you. Help them to do this by thinking about what you would want, write your advance care plan and let your loved ones know.
* Journal of the American Geriatrics Society
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