If you are wanting to think ahead

Your emotions

Planning ahead can feel difficult particularly when you are already coping with an illness or at an emotional time in your life.  Feelings may include sadness, anxiety and fear.  These are normal reactions that people have when they are coping uncertainty about their future.  Talking to a close family member or friend can help you to cope with your emotions. Health care professionals can also give you support – this includes your nurse, GP or hospital doctor.

Although planning ahead can be hard, it can help relieve anxiety and fear by giving you a greater sense of control.

How can I make sure my preferences and wishes are understood?

You may find it helpful to put your preferences and wishes into writing. This is known as a form of advance care planning. It is your choice and you should not feel pressured or forced into doing it if you do not want to. However, writing down your preferences means that this can be shared amongst those caring for you and saves you the need to repeatedly explain your wishes.

If you feel too unwell, or are unable, to actively participate in discussions about your care in the future, your plan would make it easier for those caring for you to take your views into account when decisions are being made. It is your decision who you would want to share this information with, however by letting people know your wishes they will be able to try to support your preferences. You should keep your important documents in safe place.

Writing your preferences and wishes down is called an advance statement. An advance statement can cover any aspect of your future health or social care. This could include:

  • Things that you prefer. For example, if there are certain foods you do not like, or are a vegetarian, if you prefer a bath to a shower, do you like a particular type of music. Is there someone or something that you would like to have with you?
  • Concerns about practical issues. For example, who would look after your pet if you became unwell?
  • Where would you like to be cared for? For example, at home, a care home, a hospice or a hospital

In Barnsley there are two documents that may help to support you when thinking about your preferences and wishes. These are Advance Statements and Advance Decisions, VAB document and the Preferred Priorities for Care.

In order to write an advance statement you need to be over 18 years of age and have the mental capacity to make these statements. Mental capacity is the ability to make informed decisions. Sometimes people do not have the mental capacity; this can be for a number a reasons including illness. You can write it with support from relatives, friends, carers or health and social care professionals. An advance statement is not legally binding but anyone making decisions on your behalf, when you cannot, will have to take it into account.

Can I refuse treatment?

Yes.  An advance decision to refuse treatment is a decision you can make to refuse a specific type of treatment at some time in the future.  Sometimes you may want to refuse a treatment in some circumstances but not others.  If this is the case, you must specify all the circumstances in which you want to refuse this particular treatment.  There are rules if you wish to refuse treatment that is potentially life sustaining, for example ventilation.  An advance decision to refuse this type of treatment must be in writing, signed and witnessed and include the statement “even if life is at risk as a result”.

If you wish to make an advance decision to refuse treatment you are advised to discuss this with a health care professional who is fully aware of your medical history.An advance decision to refuse treatment will only be used if at some time in the future you lose the ability to make your own decisions about your treatment.

Can my family make decisions for me?

You may wish to name someone – or even more than one person – who should be asked about your care if you are not able to make decisions for yourself.  This person may be a close family member, a friend or any other person you choose.

If in the future you are unable to make a decision for yourself, a health or social care professional would, if possible, consult with the person you have named.  Although this person cannot make decisions for you, they can provide information about your wishes, feelings and values.  This will help the health care professionals act in your best interests.

This is not the same as legally appointing somebody to make decisions for you under a Lasting Power of Attorney.

What is a Lasting Power of Attorney?

You may choose to give another person legal authority (making them an ‘attorney’) to make decisions on your behalf if a time comes that you are not able to make your own decisions.  This can be a relative, a friend or a solicitor.

A Lasting Power of Attorney (LPA) enables you to give another person the right to make decisions about you property and affairs and/or your personal welfare.

Decisions about care and treatment can be covered by a personal welfare LPA.  An LPA covering your personal welfare (sometimes called health and welfare) will only be used when you lack the ability to make specific health and welfare decisions for yourself.

There are special rules about appointing an LPA.  You can get a special form from the Office of Public Guardian (OPG) or stationary shops that provide legal packs.  The form will explain what to do.  Your LPA will need to be registered with the Office of Public Guardians before it can be used (www.justice.gov.uk), telephone 0300 456 0300

Can I change my mind?

Yes. You can change your mind and update your plans as you feel the need to. It is recommended that you revisit your plans from time to time to make sure that they still reflect your views.

If I am unable to make a decision for myself what will happen?

Usually your carers and family will be involved in making everyday decisions about your care.  However, sometimes a decision may need to be made about your medical care or treatment.  In this case senior health care professionals will make a decision in your best interest.  This decision will be based on their experience and understanding of your circumstances and will consider things such things as how likely you are to benefit from such treatment, what side effects it may cause and if the treatment may be too much for you to cope with.  They will take into account any wishes you have previously expressed and will discuss the decision with your family and friends and anyone else who might be involved in your care.

Unless you have stated otherwise, your family and carers will be given the opportunity to take part in discussions even though they cannot legally give consent on your behalf.  If you have nominated one of them to be your Lasting Power of Attorney for health and welfare decisions, that person will have a greater role in making decisions about your care.

Sometimes health professionals and those important to you may have a difference in opinion about what choice to make.  In this situation, it is helpful for both parties to remember that they all usually want what is best for you; they may simply disagree on how best to achieve this.  This should discuss this openly and if they still can’t agree sometimes a second opinion may be needed or in some cases an independent advocate will help in the decision making.

In some situations, medical staff may need to appoint someone as an Independent Mental Capacity Advocate (IMCA) to as your advocate and represent your interests if can’t do so yourself.  This will only happen if you don’t have a health and welfare attorney and have no family and friends able or willing to represent you.

These decisions are called best interest decisions.

If you want to understand more about the best interest decisions and the Mental Capacity Act (2005) please visit the following website via this link.

Why make a will?

A will is the only way to make sure your wishes are carried out after you die and that your family and friends are provided for in the way that you want. A will includes who you would like your property, personal possessions and monies to go to after you die. It can also include who you would like to look after any dependents you may have and any specific funeral arrangements that you may want. Further information about making a will can be found on the following link: https://www.gov.uk/make-will

Can I donate my organs or tissue?

Every year, hundreds of lives are saved with the help of donated organs such as hearts and kidneys, but you may not realize that donated tissue such as skin, bone and heart valves can also save and dramatically improve the quality of life for many.

For further and more detailed information please follow the link: www.organdonation.nhs.uk or telephone 0117 975 7575

Can I plan my funeral?

Yes. Planning your funeral can be helpful for your family and friends who are left behind. If you tell your family and friends what you want, your funeral is much more likely to reflect your wishes. Although it can be hard to talk about, it can be very helpful. Those important to you may have ideas and suggestions that may help you.

Some things that you may want to include are:

  • Whether you want burial or cremation.
  • Whether you would like a religious service or not. Some people who have a spiritual or religious faith often know who they would want to conduct the funeral. Some people may not want a religious service and the following organisation may offer alternative information and support www.humanism.org.uk
  • Whether you specific hymn or songs, readings or poems, flowers or donations to a charity, even clothes that you would like those attending the funeral to wear.

You can document your wishes in your will or you keep a record of them and leave them in a safe place known to your family or friends. Or simply, you can tell those that are important to you.

What is the cost of a funeral?

Funerals can be expensive and do vary in price depending on your preferences. It is possible to pay for your funeral in advance by taking out a funeral pre-payment plan. You can find out more from your local funeral directors or the National Association of Funeral Directors or helpline 0845 230 1343