When someone has mental capacity to make their own decisions concerning their medical treatment they have a legal right to refuse treatment. This can be particularly important in situations where there is no realistic prospect of regaining an acceptable quality of life. In such a situation a person might reasonably want to refuse any life-preserving treatment, including tube feeding and hydration, in order to avoid a long, drawn-out death, possibly with unpleasant symptoms.
When the person does not have decision making capacity, (for example, following a stroke or due to dementia), there are several steps that can be taken in advance to ensure that medical decisions regarding one’s future medical treatment, and other aspects of care, are in line with one’s wishes.
Recording end of life wishes in advance is helpful for both medical practitioners and close family and friends as it lets them know what the person would want. Doctors who are acting in their patient’s best interests will take these prior wishes into account if they know them. Family, who may naturally wish their relative to carry on living as long as possible, will find it easier to accept that refusal of treatment is the best option if they know that is what the person would have wanted, under the circumstances.
MDMD strongly recommend that everyone takes steps to record their end of life wishes, regardless of age and present state of health. None of us can predict the future. The case of Paul Briggs is a stark reminder of the difficulties a person’s relatives may face if end of life wishes have not been clear. MDMD also recommend that people discuss their end of life wishes with their family and GP to help them act in the person’s best interests. Multiple documents and schemes exist, each with their particular advantages and limitations. These are briefly introduced below. For more information on England and Wales please refer to the excellent information on the Compassion in Dying website, and Friends at the End website for information about Scotland.
MDMD encourages people to not only write their own advance planning documents, but to encourage others to do so too. Advice on how to broach these conversations is available here.
Advance Decision to Refuse Treatment (also known as Advance Decisions)
This is a document written while a person still has mental capacity to refuse particular types of medical treatment in specified circumstances, if they occur. Free forms and advice is available from Compassion in Dying and AD Assistance (ADA). In Scotland, Friends at the End also provide free one-on-one support for people completing Advance Care Plans.
It is important to get some of the wording correct and to get the completed form correctly signed and witnessed. Copies should be given to the person’s GP and close family. In addition, it is worth carrying an alert card in your wallet or handbag, notifying people that an AD exists and where it can be obtained.
- Legally binding on medical staff
- As it is written in advance, an advance decision has to be made without full knowledge of the actual situation when it applies.
- Although a copy should be given to the GP, in practice it may require a relative to provide the document to hospital staff in case of an emergency.
- It only allows refusal of treatments, it is not possible to request or demand treatments.
This lays out the wishes, values and beliefs that provide the reasoning that led to a person’s AD. It helps healthcare providers understand a person’s intentions in their AD. An AS is often included in an AD, or appended to it. See this NHS page and this Compassion in Dying page for more information.
- Helps decision makers act in a person’s best interests by understanding the person’s values and beliefs.
- Allows a person to request that they would like all possible life-sustaining treatment to keep them alive for as long as possible, if that is their wish.
- It is not legally binding, though anyone making decisions on behalf of someone else must take their advance statement into account.
Lasting Power of Attorney for Health and Welfare
This is a legal way of nominating someone else to make medical and care decisions on a person’s behalf, when they are not able to make decisions for themself. Further information is available on the Government website. Note that there are two types of LPA: one for health and welfare, the other for property and finance. It is advantageous to have both, possibly with different nominated people for each. LPAs have to be registered with the Office of the Public Guardian before they come into effect. An LPA-HW is broader than an AD in that it includes issues such as living arrangements, dietary preferences etc.
In practice, it would help the nominated person if there was also an advance decision and an advance statement of wishes. The attorney would be in a strong position in discussions with medical staff as they could demonstrate that their decision was a reasonable interpretation of your advance wishes
- The nominated person can make decisions in the light of the current health situation.
- The nominated person has legal authority to make decisions on behalf of the person they are acting for.
- There must be someone appropriate to nominate who understands the person’s wishes and can be trusted to act in the person’s interests.
Advance Care Plan
Advance Care Plans are used by healthcare professionals to record a person’s treatment and care wishes. An ACP is made, often at the instigation of the healthcare team, when a person is approaching the end of their life. The ACP should be attached to the person’s medical notes and be easily accessible to those involved in their care. The existence of any Advance Decision, Advance Statement or Lasting Power of Attorney should be noted in an Advance Care Plan. Some ACPs include a section for a legally binding Advance Decision.
- Often instigated by the healthcare team so that the wishes of those who have not recorded any preferences can be obtained.
- Like an Advance Statement, wishes expressed in an ACP must be taken into account by those making decisions on behalf of someone else, in their best interests.
- Not legally binding
- Typically not made until the healthcare team believe the person to be near the end of life. (AD, AS and LPA-HW can be made by adults themselves at any time, ensuring that they are in place in case of sudden onset illness such as stroke.)
DNR/ DNAR/ DNACPR
These all mean the same thing – when a person’s heart has stopped, they will be kept comfortable but there will be no attempt to restart their heart. The form is completed by a doctor, following discussion with a patient. Anyone specifying this in their Advance Decision should discuss it with their doctor and ask them to complete a DNACPR.
- Records of DNACPRs are often held by ambulance trusts to ensure that paramedics are informed so that they can act appropriately in an emergency. (Depending on different ambulance services)
- Only applies to attempting to restart the heart. ADs and LPA-HW are able to refuse any form of medical intervention, however DNACPRs apply in an emergency situation where other types of document may not be available before emergency treatment is carried out.
- Must be completed by a doctor.
- Not legally binding, though in practice it is likely to be followed.
RESPECT (Recommended Summary Plan for Emergency Care and Treatment)
This is a new process being developed to broaden the concept of a DNACPR to include other aspects of a person’s wishes in the event of emergency treatment. If widely adopted it may replace DNACPR. However, as it only applies to emergency treatment and care, it will not replace the other forms of advance care planning. Further information is available here.
- Covers a broader range of issues than DNACPR
- Aims to cover a wider range of people than DNACPR
- Allows requests FOR CPR and other treatment for those that want this.
- Not legally binding
- Must be completed by a healthcare professional
- Not yet fully operational in all parts of UK
See the October 2016 lecture given by Prof Celia Kitzinger, a leading expert in end-of-life planning.