End of life care

6. Making decisions

As someone nears the end of 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.

Understandably, many people struggle with discussing these issues in advance, and both you and professionals may find them difficult. 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.

Relatives closest to the person often assume that, as next of kin, they automatically have the final say on matters if the person loses the capacity to decide. However, who makes 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.

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 (eg pain relief, washing) or demand that a particular treatment is given.

If the person has previously made an advance statement of their wishes (for example in a 'Preferred priorities for care' document), this should be taken into account. However, it will not be legally binding. In contrast, an advance decision (or an advance directive in Northern Ireland) to refuse treatment is legally binding.

The person may have made a health and welfare Lasting Power of Attorney (LPA), in which case their attorney will act as their 'voice' in decisions about care. The attorney will need to discuss decisions with care staff and act in the person's best interests. The attorney may be able to refuse or consent to life-sustaining treatments on the person's behalf.

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), and must consult with any health and welfare attorney(s).

For more information see our pages Mental Capacity Act 2005, Advance decisions and advance statements, Lasting power of attorney. In Northern Ireland the situation is different; for more information see our page, Enduring power of attorney and controllership.