Planning for the Future
What will happen if you become seriously ill or disabled, especially if you can no longer take decisions for yourself? Many people reach a time when they find themselves contemplating the consequences. These thoughts may be spurred by a bout of ill health or as a result of a life changing event. It may just be that you are the sort of person who likes to plan ahead.
But you may want to take the opportunity to think about what living with a serious illness might mean to you, your partner, or relatives. You may wish to record what your preferences and wishes for future care and treatment might be. Or you may simply choose to do nothing at all. One way of making people aware of your wishes is by a process of Advance Care Planning. This involves thinking and talking about your wishes for how you are cared for in the future. Anyone can plan for their future care, whether they are approaching the end of their life or not. Advance Care Planning can let people know your wishes and feelings while you're still able to.
Advance Care Planning
Advance Care Planning is a process of discussion between you and those who provide care for you, for example your nurses, doctors, care home manager or family members. During this discussion you may wish to express views, preferences and wishes about your future care.
Let people know your wishes
Advance Care Planning in an entirely voluntary process and no one is under any pressure to take any of the steps. For more information on the various aspects of Advance Care Planning, please see the list of topics below.
We have also developed a booklet entitled "My Advance Care Plan" (in collaboration with NHS West Kent and other hospices) which is also very informative.
Identifying your wishes and preferences
The wishes you express during advance care planning are personal to you and can be about anything to do with your future care. You may want to include your priorities and preferences for the future, for example:
- How you might want any religious or spiritual beliefs you hold to be reflected in your care
- The name of a person/people you wish to act on your behalf at a later time
- Your choice about where you would like to be cared for, for example at home, in a hospital, nursing home or a hospice
- Your thoughts on different treatment and types of care that you might be offered
- How you like to do things, for example preferring a shower instead of a bath or sleeping with the light on
- Concerns or solutions about practical issues, for example who will look after your dog should you become ill
You may decide to write down these wishes and preferences in an Advance Statement.
An advance statement sets down your preferences, wishes, beliefs and values regarding your future care. The aim is to provide a guide to anyone who might have to make decisions in your best interest if you lose the capacity to choose for yourself or to communicate them in the future. By writing your advance statement down and talking about your wishes, you can help to make things clear to your family and anybody involved in your care.
You could, for example, want to discuss treatments that might or might not be appropriate for you and to think about those treatments you might wish to avoid. This may lead to you considering completing an Advance Decision to Refuse Treatment or appointing a Lasting Power of Attorney to help make decisions for you in the future.
An advance statement is not legally binding but needs to be taken into account when others are making decisions about your care at a time you are unable to. Take your Advance Care Plan to hospital, your GP and share it on admission to a care home.
Advanced decision to refuse treatment (ADRT)
Previously known as a living will or advance directive, this is a decision you can make to refuse a specific type of treatment at some time in the future. If you want to refuse life sustaining treatments such as artificial ventilation this needs to be in writing, signed and witnessed. It is advisable that you discuss it with a health professional who is fully aware of your medical history. An advance decision to refuse treatment is legally binding and will only be used if you lose the ability to make your own decisions in the future. Taking this step can bring benefits but may also risk harm or unintended effects. It is a good idea to discuss the risks as well as the intended benefits with a healthcare professional who is fully aware of your medical history.
The following forms are also available to view:
Lasting Power of Attorney
This enables you to give another person (or several people) the right to make decisions relating to your property and affairs and/or your personal welfare if you lose the ability to do so for yourself. Decisions about care and treatment can be covered by a Personal Welfare Lasting Power of Attorney. All Lasting Power of Attorneys must be registered with the Office of the Public Guardian, otherwise they cannot be used. It only applies to adults over 18. You can get a special form from the Office of the Public Guardian or stationery shops that provide legal packs.
DNACPR - Do Not Attempt Cardio-Pulmonary Resuscitation
A natural part of the dying process is that the heart will stop beating. This is different from a sudden cardiac arrest caused by problems with the electrical activity within the heart itself. While it may be possible to restart the heart due to a cardiac arrest it is not possible to prevent the heart from stopping as part of the dying process where it would be inappropriate and often distressing to attempt cardio-pulmonary resuscitation (CPR). A DNACPR form therefore helps to allow a natural death and prevents inappropriate attempts at CPR. The DNACPR form is only available from a healthcare professional; therefore, should you wish to explore this further, your healthcare professional will be happy to discuss it with you and complete a form if you are both in agreement.
Many people can be organ donors after they have died. In the vast majority of cases, this occurs in hospital after someone has had a sudden death and the organs can be removed from the body very quickly. However, it is possible for patients with cancer or other longer term conditions to donate some organs such as their corneas and their heart valves. These organs can be removed from the body a short while after death, meaning you can still be a donor even if you wish to die at home or in the Hospice.
You can donate any organ or tissue you choose, including your brain, to medical science. If this is what you want to do, make sure you write it down (or make an Advance Statement) and tell your family and your GP. More information on organ donation.
Making a Will
Your will lets you decide what happens to your money, property and possessions after your death. For more information visit Making a will on the governments’ website. You can write your will yourself, but you should get legal advice, for example from Citizens Advice, to make sure your will is interpreted in the way you wanted. You need to get the will formally witnessed and signed to make it legally valid. If you want to update your will, you need to make an official alteration (called a ‘codicil’) or make a new will.
Planning your funeral
Although it may be difficult to think about right now, it's a good idea to let our loved ones know our funeral wishes.
- Have you thought about whether you would prefer to be buried or cremated?
- Perhaps you would like a green funeral rather than a more traditional one.
- Think about what kind of service you would like, and whether you want it to be more of a celebration of your life than a conventional ceremony.
- What hymns, readings or music would you like to have, and who would you like to be there?
- Write these things down and give it to someone you trust, or put it in your will.
Dying Matters has a free and simple form, My Funeral Wishes, to set down what you want for your funeral.