These processes are voluntary, person-centred discussions between the individual and the people who support their care choices, priorities and preferences. These conversations should be held with the person with whom they feel most comfortable and should explore what matters most to them, including discussions about medical decisions and who, where and how they wish to be cared for at the end of life.

There are many tools to support these conversations; however, these vary according to your local practice.

There is a range of national tools that can be used:

• Do Not Attempt Cardiopulmonary Resuscitation (DNACPR).
• Treatment escalation plans, for example, ReSPECT.
• Care planning for anticipated emergencies.
• Advance statements.
• Advance Decision to Refuse Treatment (ADRT) (England and Wales only).
• Lasting Power of Attorney (LPA) for Health and Welfare and Finances (separately).
• Power of Attorney in Scotland.
• Future Care Planning (Scotland).
• Gold Standard Framework.

These tools can be helpful if a person loses the capacity to give instructions and provide a framework to support decision-making between health professionals and the relevant family, friends or carers. It allows decisions to be made in the person’s best interests, incorporating their views and wishes.

If an individual has capacity, then they are free to make any decisions regarding their treatment and care – including whether to accept or refuse interventions. Legally binding documents, such as the ADRT and LPA, only come into effect when a person lacks capacity. The Principles of the Adults with Incapacity (Scotland) Act (2000) guide the actions and decisions regarding management when a person loses capacity to:

• be of benefit to the adult
• be the least restrictive option
• take the person's past and present wishes into account
• take the views of other relevant people into account
• encourage the person to exercise their skills and develop new skills.

While it is impossible to anticipate every potential emergency, recording an individual’s preferences and wishes can provide valuable guidance and support for more informed decisions when unexpected situations occur.

Resuscitation

The nature of palliative conditions can mean an increased likelihood of cardiopulmonary arrest, and with an already poor chance of meaningful recovery, the chances are even slimmer in this case. There remains to be anxiety around ‘Do Not Attempt Cardiopulmonary Resuscitation’ (DNACPR) discussions with the perception of patients, relatives and carers often being that having a DNACPR means treatment will be stopped and that professionals are ‘giving up’.

Sensitive discussions are needed to realign thought processes. These should emphasise that treatment is not being withdrawn, but rather that individuals are being enabled to have a natural and dignified death. This avoids implementing potentially traumatic procedures that offer little or no chance of meaningful recovery. However, it is important to be aware that the DNACPR is a guideline, and there are instances where resuscitation would be appropriate, even with a DNACPR decision; for example, if the person were to choke on food.

Advance statements

These allow the person to document what is important to them, for example, this can include where they would prefer to be cared for, where they would like to die and who they would like with them.

This is often referred to as ‘preferred place of care’ and ‘preferred place of death’. This can lead to further discussions around the availability of local support services, such as district nursing, home care services and hospices for inpatient care. It can also be a prompt for discussions about fears, such as unmanaged symptoms, isolation and pain; these can often be anxieties about having a painful death.

Anticipated emergencies

Planning for an anticipated emergency can be useful to patients, relatives, carers and professionals. These plans should be written clearly in non-medical language and provide a step-by-step ‘how-to’ guide.

Common emergencies often involve hospital admission, typically triggered by infection or breathlessness. In cases of breathlessness, panic can often cause the situation to escalate, so offering a simple guide to managing that anxiety may prove extremely helpful.

For individuals facing repeated hospital admissions, they may reach a point at which they no longer wish to receive hospital treatment. In such cases, a symptom management guide, along with a clearly documented rationale for non-admittance, can help support and respect the person’s wish.

There may be some anticipated emergencies that are irreversible; these can include events such as a catastrophic bleed or airway obstruction. In those circumstances, pre-planned discussions and management, alongside a well-written guide, can prepare everyone for such an eventuality. While these pre-planned activities are helpful, they will not take the trauma of such an event away, but they can help develop coping strategies and make the experience somewhat less traumatic.

Advance Decision to Refuse Treatment (ADRT)

Although available for all, there seems to be a higher uptake of ADRT by people with a degenerative neurological condition such as Motor Neurone Disease (MND). This may be because the progression of such conditions is often more predictable. In some forms of MND, people may eventually lose the ability to breathe or eat independently.

For some, the idea of invasive ventilation or artificial feeding is deeply distressing, leading them to choose an ADRT to refuse interventions like tracheostomy or feeding tubes. As this choice can significantly shorten life, the ADRT must be prepared in collaboration with a suitably trained professional.

The document should include explicit statements such as, ‘even though I understand this may shorten or end my life…’ Once a person loses capacity, the ADRT becomes legally binding. However, while they retain decision-making capacity, they can still amend or revoke it at any time.

Sharing information

While discussing end-of-life preferences with the person is essential, it is equally important to share those decisions with the right people. All services involved in an individual's care, or who could potentially be called in an emergency, should know the person’s wishes and choices, or be aware that documentation within the home guides decision-making. This should include:

• Lasting Power of Attorney for Health and Welfare.
• Relatives and informal carers.
• General Practitioners and their associated professionals, for example, pharmacists and nurse practitioners.
• District nursing teams.
• Local ambulance service (vital).
• Hospital consultants.
• Disease-specific clinical nurse specialists.
• Specialist palliative care teams.
• Home care services.
• Social services.
• Care homes.
• Any other community teams per local region.