Advance care planning and dying at home

Advance Care Planning (ACP)

An Advance Care Plan records what your parent wants — and doesn't want — for medical treatment if they can no longer speak for themselves. Quite different from a will (which deals with after death) and from an EPA (which appoints a decision-maker).

• What it covers: resuscitation preferences, willingness to be ventilated or tube-fed, antibiotics in the dying phase, organ donation wishes, what "a good death" looks like to them, where they want to die
• Who it's for: any adult — but most useful from age 65, after a serious diagnosis, or after a hospital admission
• Who keeps it: a copy with the GP, a copy with the EPA holder, a copy with the person, and ideally registered on the national my Health Record / health information portal so emergency services can find it
• How to do one: free templates and guidance at myacp.org.nz (Te Whatu Ora) — start with their workbook

The plan is not legally binding the way an EPA is, but health professionals are required to take it into account. Combined with an EPA for Personal Care and Welfare (which is binding), it gives a clear path.

The conversation to have early

Before any crisis. Before any cognitive decline. Things worth knowing the answer to:

• If you stopped being able to feed yourself, would you want to be tube-fed?
• If you had a major stroke and could survive on a ventilator, would you want that?
• If you had advanced dementia and got pneumonia, would you want antibiotics, or comfort care?
• Do you want to die at home if at all possible?
• Who do you want around you?
• Are there cultural or religious practices that matter?
• What do you want to happen with your body — burial, cremation, natural burial, donation?

These are not abstract questions when the time comes. Knowing the answers in advance protects family from making impossible choices in a hospital corridor at 3am.

Hospice and palliative care

Hospices in NZ are free for patients and families, funded by Health NZ and donations. They are widely misunderstood: most hospice care is not in-patient and not in the last days of life.

What hospice provides

• Community palliative care — specialist nurses visit at home, manage symptoms, support family. Most hospice patients are at home for most of their care.
• Day programmes — social, therapeutic, respite-providing
• Inpatient stays — for symptom control or end-of-life care when home isn't manageable
• Family and bereavement support — counselling, support groups, before and after the death
• Equipment loans — hospital beds, syringe drivers, mobility aids — at no cost
• 24/7 phone advice for symptoms in the last weeks

How to access

• Referral from the GP, hospital specialist, or oncology team
• You don't have to be "actively dying" — most patients are referred months or years before death
• Find your local hospice via Hospice NZ
• Earlier is better. Hospice involvement in the last weeks only is a missed opportunity. Many GPs under-refer.

Palliative care without hospice

Not everyone qualifies for hospice (criteria vary by region). The GP, district nurses, and Health NZ palliative care services together cover the rest. For people with non-cancer terminal conditions (advanced heart failure, COPD, dementia, frailty), palliative care is increasingly recognised but less consistently delivered.

Dying at home — what's needed

Most people who say they want to die at home can, with the right pieces in place:

• A GP who is willing to do home visits and be reachable in the last days
• Hospice or community palliative care involved early
• Family / carer capacity — physically and emotionally
• Equipment — hospital bed, commode, syringe driver if needed (provided by hospice or Health NZ)
• Medication ready in the home — anticipatory prescriptions for pain, agitation, breathlessness so they're available when needed, not chased at midnight
• A clear plan for the moment of death — who is called first, who certifies the death, what funeral director (or family-led plan) is in place
• Backup plan — when home isn't working, a clear path to hospice in-patient or hospital

End of Life Choice Act (assisted dying)

Since November 2021, eligible adults in New Zealand can request assisted dying. The criteria are strict:

• 18 years or older, NZ citizen or resident
• Suffering from a terminal illness likely to end life within 6 months
• Significant decline in physical capability
• Unbearable suffering that cannot be relieved
• Competent to make an informed decision (no advance directive — the person must be capable of consenting at the time)

Old age, dementia, and disability are explicitly not grounds. Assisted dying must be requested by the person themselves while competent. The process is led by a medical practitioner; the GP can refer if it's not something they provide. Process details from Health NZ.

Funerals, burial, and after the death

Sister site Beforehand covers everything from the moment of death through to probate — funeral costs, who to notify, legal requirements, financial help, grief support. Worth bookmarking before you need it.