We all want to live as well as possible. That includes living the last part of our lives as well as our health will permit. End of life care consultant and best-selling author Dr Kathryn Mannix writes about a new Planning Ahead tool being piloted for the public.
Why plan ahead?
Sadly, at the very end of their lives many people who would prefer to live and die at home are taken or sent to hospital.
They are sent by well-meaning supporters, who didn’t know their wishes. Instead of their familiar home, they are surrounded by the noise of hospital wards and the bustle of hospital care for their final weeks, days or hours.
Hospital care certainly provides good nursing, and some of us will need that for our last days. But admission to hospital often also leads to extra treatments that are unwanted or even unhelpful. Blood tests, scans, drips, tubes, catheters. Antibiotics, ventilators, feeding tubes.
Some people have Cardiopulmonary Resuscitation (‘CPR’ – chest compressions, electric shock treatment to try to re-start their heart) because the hospital team didn’t know the person only wanted peace and rest, a peaceful death, and no more medical interventions.
Other people, dying at home in peace, can be visited by GPs, nurses or paramedics in a crisis. These professionals often don’t know the person, so unwanted treatment (including CPR) might be given at home. All because nobody knew their wishes.
That’s not cheerful reading, is it? That’s why we’ve developed the ‘Planning Ahead’ tool.
What is the Planning Ahead tool?
Most of us have no idea what medical decisions it would be wise to discuss with our loved ones and plan ahead for. This tool explains the kinds of decisions many people wish they had prepared for, and it gives you the various options to think about.
We think it would be a helpful way to begin an important conversation with your loved ones. It would also be a useful tool to help you think about what medical information you might need from the doctors and nurses who know you best.
The ‘Planning Ahead’ tool was started by members of the public, then given to a team of doctors and nurses to add medical information. Now, we’d like to invite members of the public to use the website to help them with their own Planning Ahead.
We would also welcome their feedback so we can keep improving the website. We think working together will make this a better tool.
The Planning Ahead tool will lead you, step by step, to think about your own values and the things that matter most to you in life (and in dying). It will offer you a chance to think about the pros and cons of being cared for at home, or in hospital.
- Explain some of the treatment decisions that may lie ahead,
- for example using drugs to manage any symptoms you may have,
- or whether or not you would want treatments like a ventilator if your chances of surviving were poor.
- It will ask you to think about whether the length of your life, or the quality of the way you live, matters more to you.
What happens when I use the ‘Planning Ahead’ tool?
As you work your way through the tool, you can keep a record of your preferences if you would like to.
You can also work through it without making any choices at all, just reading the information. Any choices you choose to make aren’t legally binding, so if you change your mind later that’s not a problem at all.
After you’ve used the tool (and you can go back as many times as you like to think about it all) we encourage you to do two things.
- Talk about the choices that you could make with your loved ones. They could look at the website with you, so they get all the information too. Talking about it will help them to understand your wishes.
- Talk about how those choices apply to your own health. Ask the doctor or nurse who knows you best. That might be your GP, a hospital specialist, a specialist nurse or another expert. They can explain how the choices in the ‘Planning Ahead’ tool apply to you. That might help you with some of the choices.
The tool also gives you links to websites that help people to make legally-binding decisions about their future care. It’s best to consider all your options and to talk to your medical advisers first, so any legally-binding decisions are matched to your own health needs.
We would love to know what you think. Adults of any age, healthy or not, are all welcome to join in.