Advanced Dementia: Palliative Care Goals of Care Discussion
Your Role — Nurse
Aged Care Facility
Your patient is an 88-year-old resident with advanced dementia (stage 7 on the Functional Assessment Staging scale). She is bed-bound, has limited verbal communication, requires full assistance with all activities of daily living, and has had two episodes of aspiration pneumonia in the past six months requiring hospital transfer. Her weight has been declining despite modified texture foods and assisted feeding. The daughter, who holds Lasting Power of Attorney for Health and Welfare, has requested a meeting to discuss her mother's care plan. The daughter is visibly distressed and has questions about whether continued hospital transfers are in her mother's best interests.
- •Acknowledge the daughter's distress and thank her for requesting this conversation. Validate that these decisions are incredibly difficult for families. Establish what the daughter understands about her mother's current condition and prognosis.
- •Explain the trajectory of advanced dementia: a progressive, life-limiting condition. Discuss the concept of 'comfort over cure' — shifting the focus from prolonging life to maximising quality of life in the time remaining.
- •Discuss the benefits and burdens of hospital transfer for aspiration pneumonia: hospitalisation causes confusion, distress, and deconditioning in advanced dementia; antibiotics and IV fluids may temporarily treat infection but do not change the underlying trajectory; each episode of aspiration pneumonia further weakens the patient. Explain that oral antibiotics in the care home (if appropriate) or a 'comfort care' approach without antibiotics can be a valid alternative.
- •Discuss the option of a Do Not Attempt Resuscitation (DNACPR) order and an Advance Care Plan: keeping the resident comfortable in familiar surroundings, with appropriate symptom management (analgesia, anticipatory medications for respiratory secretions, PRN benzodiazepines for distress). Explain that the care home can provide palliative care with support from the GP and specialist palliative care team.
- •Ensure the daughter understands that she is not 'giving up' on her mother — she is making a compassionate choice to prioritise comfort and dignity. Offer referral to the specialist palliative care team for support. Provide written information about the Liverpool Care Pathway or equivalent. Arrange a follow-up meeting with the GP and family.
The Interlocutor
Played by the actor / assessor
You are the daughter of an 88-year-old woman who has advanced dementia and lives in a nursing home. Your mother no longer recognises you, cannot speak, and is bed-bound. She's had two chest infections in six months and each time she goes to hospital she comes back more confused and weaker. You're wondering whether putting her through hospital transfers is the right thing to do anymore.
- •When asked, say you're struggling with guilt. You feel like you should be doing everything possible to keep your mother alive, but each hospital stay makes her worse. She comes back confused, dehydrated, and afraid.
- •Say your mother was always very clear that she didn't want to be kept alive with machines. But you're not sure if not treating a chest infection is the same thing.
- •When asked, say the last time she went to hospital she was there for five days. She developed a pressure ulcer and lost two kilograms. It took her three weeks to get back to her baseline.
- •Say you don't want your mother to suffer. You want her to be comfortable and peaceful. You're just not sure if you're making the right decision by considering stopping hospital transfers.
- •Say you understand it's about comfort and dignity, not about giving up. You'd like to talk to the palliative care team. You'll also discuss this with your siblings.
Sample Role-play
Thank you for coming in to speak with me today. I know these conversations are never easy. I am Dr Patel the senior nurse here. How have you been feeling about your mother recent health?
I am struggling if I am honest. I feel guilty all the time. Each time she goes to hospital she comes back worse more confused and weaker. But I feel I should do everything to keep her alive.
That is a very natural feeling — wanting to do everything for someone you love comes from a place of deep care. But I want to gently suggest that doing everything can mean different things at different stages. In advanced dementia aggressive treatment like hospitalisation for infections can sometimes cause more harm than benefit. What do you think your mother would want if she could tell us?
She always said she did not want to be kept alive by machines. But is not treating a chest infection the same as switching off life support?
How do I know if she is in pain if she cannot tell me?
That is an excellent and very thoughtful question. A ventilator is artificial life support. A chest infection in advanced dementia is different — it is often the body way of showing it is getting tired. Treatment with intravenous antibiotics and hospital admission can be very distressing for someone with dementia. The alternative is to keep her here in familiar surroundings with oral antibiotics if appropriate and medications to manage any pain or breathing difficulties. This is not doing nothing — it is providing active comfort care.
We use pain assessment tools that observe facial expressions like grimacing and restlessness. We can try a small dose of pain relief and see if she settles.
When you put it like that keeping her here sounds kinder. But I feel like I am giving up on her.
I understand why you feel that way and it is a very common emotion. Choosing comfort and dignity for your mother is not giving up. It is choosing a different kind of care — care that prioritises her comfort her dignity and her quality of life. That is a loving decision not a failure.
I have never thought of it that way. What would that look like in practice?
We create a detailed comfort care plan. We manage any pain she might be experiencing even if she cannot tell us. We keep her mouth moist manage any breathing difficulties with medication and ensure she is never alone. The specialist palliative care team can support us. We will also make sure you are supported because caring for a loved one with dementia is incredibly demanding.
Would the palliative team help me too? I feel like I am falling apart.
Absolutely. Palliative care supports the whole family not just the patient. They can provide emotional support for you. We can also arrange respite care so you can rest. You cannot pour from an empty cup.
I would benefit from respite. I have not slept properly in months.
I will arrange that. I would also like to organise a family meeting with the GP and the palliative care nurse to formalise your mother advance care plan. This documents her wishes and ensures everyone involved in her care is on the same page. Would that be helpful?
Yes please. Having everything documented would help me feel more at peace.
I will arrange it. You are doing an incredibly difficult thing making compassionate choices for your mother out of love. Please do not carry the guilt alone. We are here to support you both.
Thank you. I feel a bit lighter than when I came in.
What about hydration? She is not drinking well.
We offer fluids frequently in small amounts using a straw. If needed the doctor can prescribe subcutaneous fluids. We also keep her mouth moist with sponge sticks.
Can I stay overnight?
Of course. You are welcome anytime and your presence is comforting for her.
I will start the referrals today. You are making very compassionate decisions for your mother. Take care.
Useful Phrases
Clinical Background
Palliative care in advanced dementia is a complex ethical and clinical area. The trajectory of dementia is unpredictable but progressive. Aspiration pneumonia is a common terminal event. Principles of palliative care in dementia: advance care planning, symptom management, avoiding unnecessary hospitalisation, and family support. The Gold Standards Framework and AMBER care bundle provide guidance. The Mental Capacity Act 2005 and the Deprivation of Liberty Safeguards are relevant legal frameworks. Families often experience anticipatory grief and need psychological support.
Common Mistakes to Avoid
- ✕Framing palliative care as 'doing nothing' — it is active, compassionate care focused on comfort.
- ✕Dismissing the family's guilt — acknowledge it openly and normalise it.
- ✕Making decisions without involving the wider multidisciplinary team (GP, palliative care, care home manager).