End of Life Care Planning

Topics covered: Ridouts professional advice

This month, the Ridout Report is penned by guest author Compassion in Dying, the only UK charity that supports people to know and understand their legal rights at the end of life.

There has been huge media interest in end-of-life care in recent weeks, and much of the focus has been on the quality of communication between the person who is dying, their families and those who are providing care. Giving people the power to choose how they are treated at the end-of-life can enable them to have what they consider to be a good death, which can bring peace of mind to not only the patient, but also their family and their immediate carers. It can also help health and social care organisations to be confident that they are doing the right thing.

82% of people (YouGov 2011) have strong feelings about their care at the end of life; there are some people who are dying who would like to be kept alive as long as is possible, and many others who would rather avoid invasive treatment. It is important therefore to give people the opportunity to talk about what they want, the time to let their loved ones know and the time to understand the implications of any decisions about their future care or treatment. Encouraging service users to think about making an Advance Decision or a Health & Welfare Lasting Power of Attorney is a very effective way to broach the subject.

An Advance Decision is a document that allows someone to make a legally binding refusal of treatment in advance of a time when they can’t communicate their wishes, or don’t have the capacity to make a decision. It is commonly known as a Living Will, and is also sometimes called an Advance Directive.

They act as a direct communication between the patient and the healthcare professional treating them, at a time when the person could not ordinarily communicate their wishes themselves.  People also have the option to appoint a Health & Welfare Lasting Power of Attorney (LPA), which gives a trusted person the legal power to make decisions about medical treatment and care on their behalf.

If people have thoughts on what they want at the end of their lives we strongly recommend that they make an Advance Decision or appoint someone as a Lasting Power of Attorney. Setting out their wishes formally in such a way will help to ensure that those wishes will still be respected even if they cannot be verbally communicated by the person themselves.

Everyone has the legal right to refuse medical treatment, even if this decision means not prolonging their life, but it is important to have this conversation and make any decision as early as possible, when someone has mental capacity. Many people tell their families or immediate carers about how they want to be treated at the end of life, and think this is enough to ensure that their wishes will be respected, but unfortunately unless that person has been appointed as a Lasting Power of Attorney they have no legal right to make decisions on their loved ones’ behalf.

Many care home staff already speak to their residents and family members about what they want at end-of-life, and many then use this information to develop personalised Advance Care Plans, however without an Advance Decision or an appointed Lasting Power of Attorney the doctors and paramedics when called to a home will base their decision of how to treat someone on what they believe to be in the best interests of the patient, which in some cases may not be what the patient would have decided for themselves. For instance, a patient may have wanted to refuse mechanical ventilation in the event that they become permanently unconscious and unable to breathe, but in the absence of an Advance Decision or Lasting Power of Attorney this may not be the decision taken by the healthcare team.

We can help you ensure that those conversations with your clients and their families are formally recorded in a legally binding way.

Compassion in Dying is a UK charity working to empower people around their rights and choices for end-of-life care. We do this by providing a range of services to help people to understand their legal rights, and support them in making their wishes known to healthcare professionals to ensure they have what they consider to be a good death.

Our services include:

  • a free national ‘End-of-Life Rights Information Line’ which provides information and support for people who want to know more about Advance Decision-making, LPA’s and rights surrounding end-of-life care. You can ring us on 0800 999 2434 (available between 11am-3pm, Monday to Friday), email info@compassionindying.org.uk, or write Information Line, Compassion in Dying, 181 Oxford Street, London, W1D 2JT;
  • free Advance Decision forms and factsheets on a variety of end of life issues for members of the public;
  • free informational materials designed for health and social care professionals;
  • a community outreach service in East London, providing 1:1 support for people wishing to complete an Advance Decision or LPA; and
  • free training for health and social care organisations working in East London.

Contact us to see how we can help you support your residents and service users to discuss and record their preferences for end of life care.


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