Advance Care Planning

The aim of future or advance care planning (ACP) is to establish what matters most to the patient to plan and give the care that suits them best. Finding out what matters most to individuals enables us to give appropriate care that is centred around their goals of care.

Research shows that patients and their families welcome the opportunities presented by these discussions. Often, rather than being distressing, it gives reassurance that compassionate care is being designed for the patient and their needs. Affording some control in the last weeks, months or years of life enables a focus on the experience of living.

Timing these discussions correctly is important. It is often helpful to include those close to the patient once the healthcare professional has developed a therapeutic relationship with the patient.

Helpful phrases for beginning ACP conversations:

• Have you thought about how things are going?
• You haven’t been so well over the last few weeks/months, have you felt that?
• Have you been told that (e.g. heart failure) is a progressive illness that will likely worsen over time?
• Some people find it helpful to think about the future; there may be things you want to plan for or choices you would like to make for when things get worse. Is that something we could discuss?

Conversations can then take place over multiple contacts, updating information as time passes. Patients may, and have the right to, change their mind as time passes. For example, decisions about preferred place of care may evolve as death approaches due to their changing needs.

This can become a more formal process by creating an Advance Decision to Refuse Treatment (ADRT). These enable patients to refuse life prolonging treatment; it needs to be written, signed, and witnessed and include the phrase ‘even if my life were at risk’ for each treatment refused for it to be legally valid and applicable.  Examples of treatments that may be refused would be artificial feeding, assisted ventilation, and IV antibiotics requiring hospital admission.

These conversations should be documented and shared (with consent) in an agreed place, enabling all professionals involved in their care to know what matters to each individual patient.

Prognostication is notoriously complex, and different chronic conditions (cancer, heart failure, renal failure, interstitial lung disease, dementia, frailty) all have unique clinical courses. However, a fundamental approach to advance care planning in all patients with a life-limiting or terminal condition should include the single “surprise question”:

Would I be surprised if this patient died in the next 12 months?

It may be prompted by recurrent hospital admissions, functional decline, recurrent infections, or obvious disease progression. Where the answer to this question is no, it is our duty to open discussions with this patient about that fact and to support them in making plans for their future. 

During an acute hospital admission advance care planning may also be prompted by the question:

IS THIS PERSON SICK ENOUGH TO DIE?

Again, where the answer to this is yes, we have a duty to share that information with our patient and those that care for them to allow discussions of people’s wishes. This may then lead to support in planning for a discharge to a preferred place of care and death.