End of life care decisions

If you areapproaching 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:

  • refusing treatment
  • advance decisions
  • CPR and "do not attempt CPR" orders
  • palliative sedation
  • withdrawing life-sustaining treatments

You can also readour end of life care guide .

Refusing treatment

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 Head injury, severe , 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 personmakes 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 withlife-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 personwith severe, psychotic depression who refuses treatment because they wrongly believethat they haveno 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.

This means that the healthcare professionals who treat you will be unable tocarry 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 youdo not want and under what circumstances. For example, if you want to refuse a certain treatment, even ifit meansyour life is at risk, you must clearly state this.

As long as theadvance decisionis 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).

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 dont have the capacity to decide about CPR when a decision needs to be made, and an advance decision hasnt 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 ofpassive euthanasia, becauseit involvesa 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

Palliative sedationis 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.

Althoughpalliative sedation is not intended to end a person's life, the medication carries a risk of shortening theirlifespan. 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 isin 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 maycome 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 personhasnot 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.

Content supplied by the NHS Website

Medically Reviewed by a doctor on 24 Nov 2016