Advance decisions

Many people find it helpful to think in advance and make some plans about whether they would prefer to refuse particular types of treatment or interventions at some time in the future.

Palliative care

Palliative care or “palliation” is specialised medical care for people living with a serious illness. It is often confused with the care people receive when they are dying (end-of-life care).

Whilst palliative care can help people at the end of life, it is not just for use in this setting. You may be offered it earlier on in your disease, while you are receiving treatment. Palliative care focuses on providing relief from the side-effects of treatment, the symptoms and stress of the disease, and supporting you and your family. The main goal is to improve quality of life for both the patient and the family.

The World Health Organisation (WHO) defines this term as “an approach [to treatment] that improves the quality of life of patients and their families who are facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.”

You should speak to your healthcare team about accessing support from a palliative care specialist, or other supportive options, as part of your care. This should be done as soon as possible in your treatment pathway, to ensure you access support as soon as possible. This is particularly important if your symptoms are worsening, or you have other issues or concerns. Palliative care is offered in various settings (in a hospital, at home or in a hospice) and may look different depending on what country you live in. If your symptoms are worsening, or you have other issues or concerns and need more support, we suggest you speak with your treating doctor about your options for palliative care, or other supportive care options.

End-of-life care should help you to live as well as possible. Palliative care is an important part of end of life care and can help reduce your symptoms and improve quality of life. Your healthcare team should ask you about your needs and preferences, and take these into account as they work with you to plan your care. They should also support your family, carers or other people who are important to you. While difficult, it is never too early to discuss these matters with your loved ones.

Advance decisions: living wills

If you have any wish regarding the treatments that you are willing to accept or refuse at the end of your life, you might want to think about leaving some instructions. A living will or advance decision is a document detailing the wishes of someone. This can be used when someone becomes unable to communicate for themselves. Because it is a legal document, there are some differences in the requirements of individual countries. The following paragraphs explain the purpose of the advance decision; but you will need to check exactly what the provisions are in your own country as individual countries have different policies regarding end of life.

The document must explain exactly which treatments you want to refuse, and in what circumstances (if you might not want to refuse them in all situations). It can be helpful to discuss with a doctor what treatments you might need in future, and what would happen if you refuse them. If you might die as a result of refusing such treatment, the document must state clearly that the advance decision is applicable even if life is at risk or shortened as a result. An advance decision cannot be used to ask for specific treatments, or to ask for help to end your life.

To make your wishes legally valid, they must be written down and signed and dated by yourself, and by a witness. To be put into action, your wishes must be applicable to your situation and the treatments available, if you are not able to make your own decisions about your treatment, e.g., if you are unconscious, and if there is no reason to suspect that you might have changed your mind since the document was signed.

Writing a living will is not something you have to do, or which should cause you any unnecessary stress. You might simply want to discuss these matters with your loved ones to make sure they understand your choices, whenever you feel ready to do so.

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