End of life care

7. Making decisions

As someone nears the end of their life there will be important decisions to make about their care. These may include whether they should be resuscitated if they have a heart attack, where they wish to die and whether any religious practices are to be observed at or after their death.

Many people – including health and social care professionals – find it difficult to talk about these issues in advance. If the person with dementia has previously had open discussions about their future wishes and preferences (advance care planning), it will be much easier to act on their wishes when they are no longer able to decide.

Those closest to the person often assume that, as next of kin, they automatically have the final say on decisions if the person has lost the capacity to make them. However, the person who can make decisions for the person will vary according to the decision and what advance planning is in place. Decisions will always need to be made in the person’s best interests. In cases where there is doubt or disagreement over what is in the person’s best interests, it may sometimes be necessary to make an application to the Court of Protection (or the High Court in Northern Ireland) for it to decide.

Health and social care professionals should always involve you in decisions about the person and discuss things with you in a sensitive and straightforward way. While certain medical treatments can be refused, nobody can refuse (or be refused) basic comfort and care (for example, pain relief, washing) or demand that a particular treatment is given.

The person may have expressed their wishes using the one of the following:

  • Advance decision (or advance directive in Northern Ireland) to refuse treatment. This is a legally binding document.
  • Advance statement of wishes (for example, in a ‘Preferred priorities for care’ document). This is not legally binding, but it should be taken into account.

If the person is in England or Wales they may have made a health and welfare Lasting power of attorney (LPA) or a health and welfare deputy may have been appointed by the Court of Protection (though this is much less common). The person appointed as their attorney or deputy will need to discuss decisions with health and social care professionals and act in the person’s best interests. They may be able to refuse or consent to life-sustaining treatments on the person’s behalf. Health and welfare LPAs and deputyships are not currently available in Northern Ireland.

The senior doctor in charge of the person’s care may decide that trying to resuscitate them if their heart or breathing stops would not be in their best interests, often because it is unlikely to be successful. The doctor will then make out a DNACPR (do not attempt cardiopulmonary resuscitation) order – sometimes just called a DNR (do not resuscitate) or DNAR (do not attempt resuscitation).

The doctor should discuss this decision and the reasons for it with those close to the person (such as carers, relatives or close friends), or an advocate if one has been appointed. They must also consult with any health and welfare attorney(s) or deputy. For more information see Mental Capacity Act 2005, Advance decisions and advance statements, Lasting power of attorney and Becoming a deputy for a person with dementia. If the person is in Northern Ireland see Enduring power of attorney and controllership.