Palliative Care — Dying Well

Palliative care is specialised medical and holistic support for people living with a life-limiting illness and their families. It is not about hastening death — it is about living as well as possible for as long as possible, and dying with comfort, dignity, and meaning. Palliative care can begin at any stage of a serious illness, including dementia. For people with advanced dementia, palliative care focuses on comfort, relief from distressing symptoms, quality of life, emotional and spiritual wellbeing, and supporting those who love them. In Australia, palliative care is provided in hospitals, residential aged care facilities, hospices, and increasingly — at home. Every Australian has the right to access quality palliative care regardless of where they live, their background, or their diagnosis.

• Palliative care is NOT giving up — it is the highest quality, most compassionate care available
• It can occur alongside curative treatments — it is not either/or
• The palliative care team includes doctors, nurses, social workers, chaplains, counsellors, and allied health
• Family and loved ones are central to the palliative care team
• Cultural, spiritual, and personal values guide all decisions

Dementia is a life-limiting illness. While the trajectory is different from cancer or heart disease, advanced dementia is a terminal condition that benefits enormously from a palliative approach. The transition to palliative care in dementia is not always clearly marked — it may be gradual, and families and staff often need guidance on recognising when the focus of care is shifting. Recognising that a person with dementia is entering the final months of life can be difficult. Signs may include significant weight loss, recurrent infections, increasing immobility, inability to swallow safely, and withdrawal from interaction. Early, compassionate conversations between families, carers, and clinical teams about goals of care — before a crisis — lead to better outcomes and greater peace.

• Comfort-focused care is appropriate when curative treatment no longer serves the person's quality of life
• Oral care, pressure area care, and management of pain and breathlessness are central priorities
• Tube feeding is NOT recommended in advanced dementia — evidence does not support it and it may cause distress
• Assisted oral feeding with care and patience is the preferred approach
• Hospitalisation at end of life is often distressing for people with dementia — home or facility-based care may be preferable
• The AMBER Care Bundle and Gold Standards Framework are evidence-based end-of-life care planning tools; ELDAC (End of Life Directions for Aged Care) is the Australian Government-funded national framework for aged care
• Cheyne-Stokes respiration — a cyclical pattern of deepening breaths, then shallowing, then brief pauses — is a natural and expected part of the dying process as brain stem function changes. It does not cause the person distress. Families witnessing it should be reassured their loved one is not suffocating

Many Australians say they would prefer to die at home, yet the majority still die in hospital. For people with dementia, familiar environments, familiar faces, and the sounds and smells of home can provide profound comfort in the final weeks and days of life. Dying at home is absolutely achievable with the right support. Community palliative care teams, GPs, and home nursing services can support both the person and their family through the process. Carers should not feel they have to do this alone — help is available, and using it is not a sign of failure.

• Discuss wishes early — have the conversation before a crisis forces decisions
• Ensure a Medical Certificate of Cause of Death (MCCD) process is planned with your GP so it can happen at home
• Arrange a Palliative Care Assessment through your GP or My Aged Care
• Equipment loan services can provide hospital beds, pressure mattresses, and syringe drivers at home
• Ask about an Urgent Response (SOS) service — most states have 24/7 palliative care phone support
• Carer wellbeing is critical — arrange respite care, overnight nursing support, and regular breaks
• After death, you do not need to rush — families can have time with their loved one at home

Advance care planning gives people a voice in their own care when they can no longer speak for themselves. For people living with dementia, completing these documents early — while they have decision-making capacity — is one of the most important things they can do. Australia has a range of legal documents that vary slightly by state and territory, but all serve the common purpose of recording wishes and nominating decision-makers.

• Advance Care Directive (ACD): Documents your healthcare wishes and values. Legal form varies by state and territory — a clearly expressed refusal of treatment is legally binding, but general wishes and values are not. NSW has no statutory directive (common law only); QLD recognises only statutory directives.
• Enduring Power of Attorney (EPOA): Appoints someone to make financial and/or personal decisions on your behalf
• Enduring Guardianship: Appoints someone to make personal and lifestyle decisions (varies by state)
• Goals of Care (GOC) Form: Used in clinical settings to document current wishes around treatment and resuscitation
• Not for Resuscitation (NFR) or DNR Order: Must be completed with a doctor — outlines resuscitation preferences
• Medical Power of Attorney: Appoints a medical decision-maker (varies in name by state)

Grief in dementia often begins long before death — this is called anticipatory grief or ambiguous loss. Carers and family members grieve the person they knew while they are still alive, watching them change and lose abilities. This is a normal, recognised form of grief, and it deserves the same compassion and support as grief after death. After death, bereavement can be complicated for those who cared for a person with dementia. Some carers feel relief — and then guilt about feeling relief. Both the grief and the relief are valid. There is no right way to grieve.

• Anticipatory grief (grief before death) is real and deserves support — seek help early
• Grief counselling is available free or low-cost through many palliative care services
• Carers may experience prolonged grief — professional support makes a real difference
• Children and young people who have lost someone to dementia need age-appropriate support
• Online peer support communities connect bereaved carers with others who truly understand

Aged care staff — in residential facilities and in the community — are often the people most present with a person as they approach death. This is profoundly important work, and it requires specific knowledge, preparation, and support. For many care workers, a client or resident dying is not an unusual event — it is part of the work. But the accumulation of loss over a career can be significant, and workers often receive little formal support to process it. This section is for you.

• Know your client's Goals of Care and Advance Care Directive — this information should be in the care plan and accessible at all times
• Know what "comfort care" means in practice: oral care, repositioning for comfort, management of pain and breathlessness, familiar music, familiar voices, dim and warm lighting
• Signs that death may be approaching: mottled skin, changes to breathing (Cheyne-Stokes), cold extremities, unresponsiveness, reduced or absent urine output
• You are NOT expected to manage these signs alone — contact your supervisor, the on-call nurse, or palliative care team immediately when you observe these changes
• Communicating with families at end of life: be honest, be gentle, avoid clinical jargon. "She seems very peaceful" or "We are making sure she is comfortable" are appropriate. Do not speculate on timeframes.
• After a death in a facility: follow your organisational protocol for body care, family support, and documentation. Allow yourself to acknowledge that this was a human being you cared for.
• For community care workers alone in a client's home: if a client dies, do not leave the scene alone. Call your supervisor immediately. Contact family if authorised to do so. Call 000 if the GP has not certified death.
• Seek debriefing after every death — informal peer support, formal EAP counselling, or palliative care team debrief sessions. Grief accumulates in this work.
• You are allowed to feel grief for people you care for. This is not unprofessional. It is human. And it is sustainable only when you have support.

Dementia and palliative care are global challenges. Whether you are supporting someone in Australia, or a loved one overseas, or you are an internationally-trained health professional, these resources set out the guidance from the Australian and international bodies cited on each page.