Sadly, many people do not find out that they are dying until they run out of time and are too ill to make plans and do the things they want to do.
If people can be identified as likely to die in the next 12 months, there is time to plan ahead.
There are lots of things you can do to plan ahead even if you are not ill – just ask yourself 'what if I was told I had a week to live?' then think:
- Will those around me know how best to support me?
- Will they know about any strong wishes I have about how I want to be cared for?
- Will I have made a will?
- Will those I love know how I feel about them?
- Will relatives know of any plans I've made for after my death?
- Will I want to spend the last few days of my life worrying about all this?
Keeping a record of your thoughts and feelings - creating a personal portfolio
Often people will think about and talk about what is happening to them and have ideas about their future care but then don't record whats is important to them. Writing down your wishes and other important information will help your family and friends to understand your priorities and you are more likely to have your wishes respected. This is also helpful if family members disagree over what might be important to you. You can do some of this even if you're not ill in case you die unexpectedly e.g. in an accident. This can be a huge help for your loved ones left behind.
You can put all your important information together and create a personal portfolio. It doesn't need to be anything special – you can use a box or a ring binder file. Make sure someone you trust knows where it is kept. The information in your portfolio can be used by the people close to you when you die. It is also useful in an emergency, if you lose the capacity to make decisions for yourself as your health deteriorates or if you just become too tired and ill to remember everything you need to do.
You can put whatever you want in your portfolio – here are some ideas:
- Name (include your given name and any other name(s) you are known by)
- Date of birth
- Telephone number, mobile number, email address
- Details of who to contact in an emergency
Where you want to be cared for now and in the future
- Include your preferences and what is important to you e.g. whether you would prefer to stay at home with support, whether you would consider moving to a nursing or care home, whether you would want to avoid admission to hospital if possible.
- You can use a document called 'Preferred Priorities for Care' or PPC to record this information.
Whether you would refuse specific treatment in certain circumstances
- This is done by making an advance decision to refuse treatment.
- Whether there is someone or more than one person you would want to be consulted about your care if you are unable to make a decision for yourself.
- This person may be a family member, a friend or any other person you choose.
- This person cannot make decisions for you but they can provide information about your wishes, feelings and values.
- This helps the health care professionals act in your best interests.
Whether you have appointed a Lasting Power of Attorney (LPA)
- An LPA enables you to give another person the legal right to make decisions about your property and affairs and/or your personal welfare.
- There are special rules about appointing an LPA – find out more...
- Include details of next of kin and other family members and friends.
- Location of your address book or information about who you want to be notified of your illness or death.
- Funeral director
- Faith advisers
- Home contacts e.g. cleaner, meals on wheels
- Local traders (for services that may need to be cancelled)
- Work/voluntary work contacts
- GP details
- Hospital specialist details
- National Insurance number
- NHS number
- A list of your medical conditions
- If you have a pacemaker fitted
- Medication and where it is kept
- If you are a registered organ donor
- Carers/care agency details
- Give details of where important documents can be found.
- Consider issues of security and who you share this information with.
- Financial information – bank accounts, credit cards, store cards, insurance policies, benefits, pensions, tax reference number.
- Utilities – e.g. water, gas, electricity supplier.
- House details – deeds, mortgage, landlord, rent.
- Your will.
- Birth, marriage, civil partnership, divorce certificates.
- Details of any pre-paid funeral plan.
- Preferred Funeral Director.
- Whether you want an announcement of your death – if so, where?
- Whether you want a burial or cremation.
- Whether you want a funeral service – if so, in which religion/spiritual belief/philosophy?
- What you want including in your funeral eg who do you want to conduct the service, music preferences, flowers, donations.
- What sort of coffin do you want?
- Whether you have any preference as to what your body is dressed in.
- Whether you have any preference as to where your body rests the night before the service – at home/ in the family home/ in the funeral home.
- Do you want your ashes scattered (where) or buried?
Care of dependents
- Discuss with and appoint a guardian for any dependent children. This is especially important if you are a single parent or if there is more than one potential guardian. This information is often included in wills. You may need legal advice if your family arrangements are complicated.
- If you are responsible for the care of elderly relatives, agree who should take over as your health deteriorates and record this in your portfolio.
Care of pets
- Agree and record who will take over the care of your pet(s) when you are no longer able to do this.
Organ and tissue donation
- Record whether you want any of your tissue or organs to be donated after your death and make sure your relatives know.
- It's helpful if you join the organ donor register.
- If you feel strongly about not donating your tissue or organs, keep a record of this decision in your portfolio and talk to your families. This will help them to know what to do if they are approached for permission to donate your tissue or organs after your death.
Leaving a message
- Consider leaving a message for your loved ones – this could be a letter, CD, DVD.
- Consider making an 'Emotional Will' – details can be found in 'Dying matters'.
- Your will usually includes details about how your estate should be divided amongst your heirs.
- It may be helpful to be specific about certain possessions especially if you think something with sentimental value could cause conflict between family members.