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Here’s a quick guide for planning end of life care with the person you care for. It explores the importance of taking a planned approach and highlights a number of ways in which, together, you can make an advance plan whilst the person you care for has the mental capacity to make their own decisions. When the person you care for has a terminal illness, it can be an especially difficult time for you too. It will be physically and emotionally demanding with lots of practical things to think about. You and the person you care for may not feel like planning ahead, but there are a number… what is important to them, you, and wider family in relation to end of life care. The person you care for may assume that if they are unable to make a decision about their own care and treatment because they lack mental capacity, those close to them such as yourself can make decisions on their behalf…

for has to state the specific treatment they do not want and in what circumstances the refusal will apply. If the person you care for chooses not to have a treatment that will keep them alive (known in law as ‘life sustaining treatment’) they have to be very specific about the circumstances, put this in writing, sign it and have it signed by a witness. An example of this might be the refusal of a mechanical ventilator or a blood transfusion. The person you care for cannot refuse care to make them comfortable, nor can they request help to bring about the end of their life. It does not cost…

Advance Care Plans are usually made by someone with their healthcare team when they are approaching end of life, although they can be started at any stage in life. The plan is used to record the person’s treatment and care wishes and can be reviewed and updated. If the person you care… for about what you are willing and able to provide in relation to providing end of life care so that this is taken into account as part of their Advance Care Plan. Discuss sharing of information with the person and professionals. If the person has mental capacity, have they provided consent (either… A DNAR decision is a written instruction to medical staff not to attempt to bring a person back to life, in other words using Cardiopulmonary resuscitation (CPR) should their heart stop beating or they stop breathing. It does not relate to any other form of medical treatment. The decision is usually…

a decision now doesn’t mean it can’t be changed. Talking about how to pay for end of life care is an important consideration when discussing where to be cared for. There are lots of different sources of help with end of life care costs and sometimes it is difficult to work out what you may or may not be entitled to. To help with this go to Funding End of Life Care . Things to think about Seek clarity about the type of care the person you care for wants at the end of life that might influence where end of life care is best provided. Discuss the options of where to die with the person you care for, outlining the pros and cons of each option. You can read the NHS guide to where you can have end of life care . If the person you care for is not sure, talk with other family, their GP, and other health or social care professionals involved in their care. Discuss diagnosis, prognosis…

? for the sorts of questions to ask. Don’t rush the conversation – it’s a process and may involve a number of shorter conversations. Little and often may work best. Give some warning to the person you care for that you want to talk about end of life decisions so it doesn’t come as a complete shock…

to our directory for further information . To help you with your conversations and use further resources Winston’s Wish teamed up with Macmillan Cancer Support to produce a book for parents who are nearing the end of life to broach the subject with their children. Child Bereavement UK has useful…

You and/or the person you care for may find it easier to ask a professional to be involved in discussions about death. Or it might be simply having the professional there that will give everyone more confidence to talk about death. Who that professional is will often depend on the person you care for and who they have the most contact with, for example, their GP, a social care worker, or a palliative care nurse. Many ‘end of life’ conversations take place in hospital, yet there are massive variations on the part of medical staff as to how and when conversations about dying take place. Unless doctors and ward staff state very clearly that a patient is dying or is at high risk of dying relatives and carers are often left in limbo. Consent to share information can also prove to be a barrier to families getting the information they need to get an honest and accurate picture…

A person with a learning disability may need support to talk about death and dying or to make important decisions around their own end of life care. They may need additional help, specific to their communication needs, to ask questions and to make sure their wishes and preferences are recorded. ​A person with a learning disability in your family may also be involved in providing end of life care. Marie Curie has developed a number of easy read booklets that will help a person with a learning disability talk about death and provide support to someone with a terminal illness. For more information about talking with people with learning disabilities and end of life planning Professor Irene Tuffrey-Wijne talks further at Tuffrey-Wijne . …

Here are the things you need to consider as you prepare for your child’s final days, how you prepare to say goodbye to your child, and what happens following their death. Planning for end of life A member of your child’s care team will approach you to discuss what you and your child would like to happen as they become more seriously ill and approach their last days. This will be an incredibly difficult time for you but you should get openness, honesty, and full support from all the professionals around you. You will all be working together to develop a plan for end of life… with a member of your child’s team and this may particularly be the case if your child is not in hospital. It’s important you and your family are able to make the most of the last weeks and days of your child’s life and your child, depending on their age, may have their own wishes and goals to achieve…

. If the person has died at home, you can keep the body at home until the funeral if you choose, and the funeral director can help you look after the body there. You can also have the body cared for at the funeral home and you can visit them there. Things to think about If providing near end of life care… Although you will be feeling very emotional, the person’s death must be confirmed by a doctor or health professional trained to formally verify death within two to three hours. This is called ‘verifying the death’. If the person dies at home and there is no health care professional qualified to verify death present at the time of death then you will need to ring the person’s GP surgery. The regular GP who has treated them during their illness and visited them during their last two weeks of life will check if the person has died. It is best not to move the body or any equipment…