End-of-Life Care Planning

End-of-life care planning is a structured process in which a patient, together with their medical team and family, documents their wishes for medical treatment in the final stage of a serious or terminal illness.

During this process, a palliative care (comfort-focused care) specialist helps the patient think through questions such as: which treatments they want or do not want, where they prefer to be cared for, who should make decisions on their behalf if they can no longer speak for themselves, and how their pain and other symptoms should be managed. The aim is not to hasten death or give up hope, but to make sure the patient's own values guide every medical decision made on their behalf.

End-of-life care planning is recommended for anyone living with a serious, life-limiting illness whose condition is unlikely to be cured. It is especially valuable when a patient's health may decline in unpredictable ways, making early planning important.

• Advanced cancer (cancer that has spread and cannot be removed)
• End-stage heart failure (heart disease in its final stage where the heart can no longer pump adequately)
• End-stage chronic obstructive pulmonary disease or COPD (severe, irreversible lung disease)
• End-stage kidney failure requiring dialysis (a machine-based blood-cleaning treatment) or in patients who choose not to continue dialysis
• Advanced dementia (progressive brain disease causing severe memory and function loss)
• Motor neurone disease or ALS (a condition where nerves controlling movement gradually stop working)
• Advanced liver cirrhosis (severe scarring of the liver that prevents normal function)
• Any terminal diagnosis where a doctor estimates life expectancy is limited

This planning process is generally not the right focus when a patient still has many curative (aimed at curing the disease) treatment options available and their long-term prognosis (expected outcome) remains uncertain. In those situations, treatment discussions usually centre on recovery rather than end-of-life preferences. A doctor will guide the patient and family on the right timing.

End-of-life care planning is a series of conversations and documents, not a physical procedure, so it carries no medical or physical risks to the patient's body. However, there are emotional and practical challenges that patients and families commonly experience.

• Emotional distress — discussing death and serious illness can bring up grief, fear, or anxiety for the patient and family members
• Family disagreement — relatives may have different views from the patient about what care should look like, which can create tension
• Incomplete documentation — if wishes are not clearly written down, medical staff in a different hospital or emergency setting may not be able to follow them
• Changing wishes — a patient's preferences may shift over time, and plans that are not updated may no longer reflect their true wishes
• Feeling of loss of hope — some patients initially experience the planning conversation as a signal that doctors have given up, even though this is not the intention; skilled palliative care teams are trained to address this sensitively

There is no fasting, medication change, or physical preparation required before end-of-life care planning conversations. The preparation is mainly emotional and practical: gathering thoughts, deciding who should be present, and collecting relevant medical records so the discussion can be as informed as possible.

Before the meeting, families are usually encouraged to think about the following questions, though there are no right or wrong answers:

• What matters most to the patient in daily life — for example, being alert enough to communicate, being free from pain, or being at home
• Which treatments the patient would want in a crisis — for example, whether they would want resuscitation (emergency attempts to restart the heart or breathing) or mechanical ventilation (a breathing machine)
• Where the patient would prefer to spend their final weeks or days — at home, in a hospice (a care facility focused entirely on comfort), or in hospital
• Who the patient trusts to make medical decisions on their behalf if they lose the ability to do so themselves — this person is often called a healthcare proxy or surrogate decision-maker

During the planning session itself, the steps typically follow this order, though the pace and depth will depend on the patient's condition and wishes:

• 1. The palliative care doctor or nurse opens the conversation by asking what the patient already understands about their illness and what concerns them most
• 2. The medical team explains the likely course of the illness in plain language, including what might happen if different treatment paths are chosen
• 3. The patient and family share their values and wishes — this is the heart of the conversation
• 4. The team helps translate those wishes into a written care plan or advance directive (a legal document recording medical preferences)
• 5. The document is reviewed, signed, and placed in the patient's medical record so all future caregivers can access it
• 6. A follow-up meeting is usually scheduled, as wishes may change and new medical developments may arise

After the initial planning session, the focus shifts to making sure the documented wishes are honoured and that the patient and family continue to feel supported. This is an ongoing process, not a one-time event, and the care team typically stays actively involved throughout.

• The written care plan or advance directive should be shared with all treating doctors, including any specialists, the family doctor, and the chosen surrogate decision-maker
• If the patient is admitted to hospital or transferred to a new facility, a copy of the plan should travel with them and be added to the new medical record
• The palliative care team usually schedules regular follow-up meetings to review whether the plan still matches the patient's current wishes and medical situation
• Symptom management — such as pain control, management of breathlessness, and relief of nausea — is reviewed and adjusted at each follow-up
• Psychological and spiritual support for both the patient and family members is typically available through the palliative care team, and may include counselling, religious guidance, or support groups
• Families are usually offered bereavement (grief) support services after the patient's death, as part of the continuing care the team provides
• The advance directive can be updated at any time if the patient's wishes change — this is encouraged rather than discouraged