End of life care decisions
If you are approaching the end of life, you have a right to good palliative care to control pain and other symptoms, as well as psychological, social and spiritual support.
You're entitled to have a say in the treatments you receive at this stage. Read on to find out about:
You can also read our end of life care guide.
Under English law, all adults have the right to refuse medical treatment, even if that treatment is required to save their life, as long as they have sufficient capacity (the ability to use and understand information to make a decision).
Under the Mental Capacity Act (2005), all adults are presumed to have sufficient capacity to decide on their own medical treatment, unless there is significant evidence to suggest otherwise. The evidence has to show that:
- a person's mind or brain is impaired or disturbed
- the impairment or disturbance means the person is unable to make a decision at the current time
Examples of impairments or disturbances in the mind or brain include:
- brain damage caused by a severe head injury, stroke or dementia
- mental health conditions, such as psychosis (where a person is unable to tell the difference between reality and their imagination)
- any physical illness that causes delirium (illusions, disorientation or hallucinations)
If a person makes a decision about their treatment that most people would consider irrational, it does not constitute a lack of capacity if the person making the decision understands the reality of their situation.
For example, a person with life-threatening cancer may refuse a course of chemotherapy because they would rather not tolerate the treatment's side effects for the sake of a slightly longer life. They understand the reality of their situation and the consequences of their actions, and have therefore made a perfectly rational decision.
However, a person with severe, psychotic depression who refuses treatment because they wrongly believe that they have no hope of recovering and are so worthless they deserve to die would be considered incapable of making a rational decision. This is because they do not understand the reality of their situation.
Read more about consent to treatment.
If you know that your capacity to consent may be affected in the future – for example, because you may become unconscious – you can arrange a legally binding advance decision (previously known as an advance directive).
An advance decision clearly sets out the treatments and procedures that you do not consent to. This means that the healthcare professionals who treat you will be unable to carry out certain treatments and procedures that are against your wishes.
For an advance decision to be valid, you must be very specific about what treatments and procedures you do not want and under what circumstances. For example, if you want to refuse a certain treatment, even if it means your life is at risk, you must clearly state this.
As long as the advance decision is valid and applicable, the healthcare professionals treating you must follow it. In other words, it must cover exactly the condition you go on to develop and the treatment decision being debated.
There must be no doubt about your capacity at the time of drawing up the advance decision, and it must be clear that you have a good understanding of your condition and any treatment you are refusing. There must also be no suggestion that you were being coerced (or unreasonably influenced) by others when you made the decision.
If there is any doubt about the advance decision, the case can be referred to the Court of Protection, which is the legal body that oversees the Mental Capacity Act (2005).
Read more about advance decisions.
CPR and 'do not attempt CPR’ orders
Cardiopulmonary resuscitation (CPR) is a treatment that attempts to restore breathing and blood flow in people who have experienced cardiac arrest (when the heart stops beating) or respiratory arrest (when they stop breathing).
CPR is an intensive treatment that can involve chest compressions (pressing down hard on the chest), electrical shocks to stimulate the heart, injections of medication and artificial ventilation of the lungs.
Despite the best efforts of medical staff, CPR does not have a good success rate, even in patients who are selected as appropriate for CPR.
In hospital, only around 15-20% of people survive after having CPR, and survival rates are even lower in community settings.
Even when CPR is successful, a person can often develop serious and sometimes painful complications, such as:
- fractured ribs
- damage to the liver and spleen
- brain damage, leading to disability
People who survive after having CPR often need high-intensity medical support afterwards, and a small number need prolonged treatment in an intensive care unit (ICU).
Due to the low success rate of CPR and the corresponding high risk of complications, many people – particularly those with terminal illnesses – make it clear to their medical team that they do not want to have CPR in the event of cardiac or respiratory arrest.
This is known as a "do not attempt cardiopulmonary resuscitation" or a DNACPR order. Once a DNACPR order is made, it is put on your medical records.
If you have a serious illness, or you are undergoing surgery that could cause respiratory or cardiac arrest, a member of your medical team should ask you about your wishes regarding CPR (if you have not previously made your wishes known).
Some hospitals now routinely ask certain patients if they they would want to receive CPR. If you don’t have the capacity to decide about CPR when a decision needs to be made, and an advance decision hasn’t been made, the health care team may consult your next of kin about your wishes and best interests (see the "withdrawing life-sustaining treatment" section below).
A DNACPR order is not permanent, and you can change your DNACPR status at any time.
Some supporters of euthanasia have argued that DNACPR is essentially a form of passive euthanasia, because it involves a person being denied treatment that could save their life.
The counter-argument to this is that the success rate of CPR is often so low, and the risks of complications so high, that a person is not really being denied life-saving treatment.
Palliative sedation is when a person is given medication to make them unconscious and, therefore, unaware of pain. It is often used in cases where a person has a terminal illness.
Many terminal illnesses can cause distressing and painful symptoms when the person reaches the final stages. These can include:
- muscle spasms
- bone pain
- unpleasant and sometimes frightening breathing difficulties
- upsetting emotions and feelings – such as fear, apprehension and distress
Palliative sedation is a way of relieving needless suffering.
Although palliative sedation is not intended to end a person's life, the medication carries a risk of shortening their lifespan. This has led some critics to argue that palliative sedation is a type of euthanasia.
A counter-argument is known as the "doctrine of double effect". This states that a treatment that has harmful side effects is still ethical as long as it is in the best interests of the patient and the harmful side effects were not intended.
For example, very few people would argue that chemotherapy is unethical, even though it can cause a wide range of harmful side effects.
Withdrawing life-sustaining treatments
There are many different types of treatment that can be used to sustain life in people with serious or terminal illnesses. These include:
- nutritional support through a feeding tube
- dialysis – where a machine takes over the kidneys' functions
- ventilators – where a machine takes over breathing
Eventually, there may come a time when it is clear that the prospects of a person recovering are zero and – in the case of terminal illness – the life-sustaining treatments are only prolonging the dying process.
If the person has not made an advance decision outlining the care they would refuse to receive in these circumstances, a decision about continuing or stopping treatment will need to be made, based on what that person's best interests are believed to be.
In such circumstances, the medical team will discuss the issue with family members and give them time to consider all the implications.
If there is an agreement that continuing treatment is not in the person's best interests, treatment can be withdrawn, allowing the person to die peacefully.
If an agreement cannot be reached, or a decision has to be made on whether to withdraw treatment from someone who has been in a state of impaired consciousness for a long time (usually at least 12 months), the case will need to be referred to the courts before any further action can be taken.
Information on coping when you find out you may not have long to live. Includes emotions, depression and living with your diagnosis
Page last reviewed: 11/08/2014
Next review due: 01/06/2017