Advance Care Planning in Nursing Homes: A Guide for Family Caregivers and Physicians
Advance care planning in a nursing home is a continuous conversation, not a one-time form. For a person with dementia, this process is urgent because the disease robs them of the ability to speak for themselves. You can still honor their values and avoid unwanted, painful treatments by starting early, using the right tools, and working as a team with the nursing home staff. This guide gives you concrete steps, exact words to say, and what to watch for so you feel prepared, not overwhelmed.
Key points
- Start advance care planning early, while the person with dementia can still participate. Use tools like the Conversation Project and Five Wishes.
- Complete a healthcare power of attorney and living will. Have the nursing home place these in the medical record and give copies to all providers.
- Schedule a care conference within the first week of admission and quarterly thereafter. Bring a one-page summary of goals.
- Use a POLST form to turn advance directives into medical orders that staff must follow. This prevents unwanted hospitalizations and aggressive treatments.
- Educate yourself about palliative care and hospice. Both are underused in dementia. Ask for a palliative consult early and a hospice evaluation when the person declines.
- Create a 'File of Life' and keep it accessible. Designate a local contact if you are a long-distance caregiver.
Why Advance Care Planning is Different in a Nursing Home
In a nursing home, the person with dementia is already in a setting where medical decisions are made daily by staff who may not know their life story. Unlike a hospital where a crisis triggers a single decision, nursing home care involves ongoing choices about eating, drinking, moving, treating infections, and managing pain. Research shows that about 67 percent of dementia-related deaths occur in nursing homes, making this the most common place where end-of-life decisions happen for people with Alzheimer's and other dementias. Yet many physicians do not view advanced dementia as a terminal illness, so palliative care is offered less often than it should be. This means you, as the family caregiver, must be the advocate who ensures the care plan reflects your loved one's goals, not just the facility's routines.
The Unique Challenge: Loss of Voice and the Need for Early Action
Dementia progressively destroys memory, judgment, and the ability to communicate. By the time a person enters a nursing home, they may already struggle to understand complex choices or express preferences. This is why advance care planning must start as soon as possible after diagnosis, ideally while the person can still participate. The Alzheimer's Association emphasizes that discussions about care and treatment decisions are critical because of the progressive and inevitable decline, and because many medical interventions produce no benefit or even harm people with advanced dementia. For example, tube feeding, antibiotics for late-stage infections, or hospitalization for a fall may prolong suffering without improving quality of life. The goal is to create a plan that guides the nursing home team to provide comfort, dignity, and alignment with the person's values, even when they can no longer speak.
How the Nursing Home System Works (and Where You Fit In)
Nursing homes are regulated environments with a medical director, director of nursing, and care plans based on the Minimum Data Set (MDS), which tracks functional status. Your role is to ensure that the advance care plan is not just a piece of paper in a file but a living document that is revisited regularly. The AAFP recommends that a designated staff member manage periodic reviews of the plan, and that copies be sent to all healthcare professionals, including hospital personnel. You should ask the nursing home: Who is the point person for advance care planning? How often will we review the plan? Can we have a family care conference every three months or whenever there is a significant change? This proactive approach prevents crises where decisions are made in the emergency room without your input.
General caregiving information, not medical advice. Check medications and major care changes with your clinician.
Step-by-step
Start the conversation immediately after diagnosis, even if your loved one is not yet in a nursing home. Use the 'Conversation Starter Kit' from The Conversation Project (theconversationproject.org) to guide a gentle discussion about what matters most: being pain-free, staying at home, avoiding hospitals, or having certain people present. Write down their answers in their own words.
Complete the core advance directive documents: a healthcare power of attorney (naming a proxy decision-maker) and a living will (stating preferences for life-sustaining treatments). The National Hospice and Palliative Care Organization (caringinfo.org) provides state-specific forms. Have the nursing home place these in the medical record and give copies to the proxy, primary care physician, and hospital.
Schedule a formal care conference with the nursing home team within the first week of admission. Bring the advance directive and a one-page summary of your loved one's goals. Say: 'Mom's main goal is to be comfortable and not be in pain. She does not want to be hospitalized unless absolutely necessary. Please document that we want a palliative approach, not aggressive treatments.' Ask the team to write this into the care plan.
Ask the nursing home to create a 'Goals of Care' document that specifies which interventions are acceptable. For example: 'Use oxygen for comfort, but no intubation or BiPAP. Treat infections with oral antibiotics only, not IV. If swallowing becomes unsafe, provide comfort feeding by hand, not a feeding tube.' This mirrors the AAFP example of a patient with pulmonary hypertension who wanted to avoid hospital-based breathing machines.
Educate yourself and the nursing home staff about the difference between palliative care and hospice. Palliative care can be provided alongside curative treatments at any stage. Hospice is for the final six months of life and focuses solely on comfort. Medicare and Medicaid both cover hospice in nursing homes. Ask: 'Is a palliative care consult available here? When would hospice be appropriate?'
Schedule a quarterly review of the advance care plan, or whenever there is a major change (e.g., a fall, infection, weight loss, or change in cognition). Use the MDS assessment as a trigger. At each review, ask: 'Has her condition changed? Do we need to update the plan? Are we still honoring her goals?' The AAFP stresses that choices are fluid and must be revisited.
If your loved one is in the late stages of dementia (unable to walk, speak, or eat), initiate a conversation about hospice. Research shows that effective pain treatment does not hasten death, but many families worry about this. Say to the doctor: 'We want to ensure she is not suffering. Can we get a hospice evaluation to see if she qualifies?' Hospice teams are experts in comfort care and can reduce hospital transfers.
Create a 'File of Life' for the nursing home and keep a copy on the refrigerator at home (if applicable). This file should include: medication list, diagnoses, allergies, emergency contacts, and a one-page summary of advance care preferences. This ensures that emergency responders and hospital staff know the plan immediately, as recommended by Home Instead Senior Care.
If you are a long-distance caregiver, designate a local contact (friend, relative, or paid advocate) who can attend care conferences and visit regularly. Use video calls to participate in meetings. The nursing home must allow you to join by phone or video. Ask for a monthly update email from the social worker or nurse manager.
In a crisis (e.g., infection, fall, or sudden decline), remind the nursing home staff of the advance care plan and ask them to contact the proxy before calling 911 if it is safe to do so, unless the person requires immediate emergency intervention and the plan does not prohibit it. Always inform the proxy promptly. The proxy should then tell the staff: 'Per the advance care plan, we want comfort measures only. Please do not send her to the hospital unless it is for pain control that cannot be managed here.' This prevents unwanted hospitalizations.
What not to do
Do not wait until a crisis to discuss advance care planning. Many families avoid the conversation because it feels too hard, but this leads to rushed decisions in the emergency room that may go against the person's values. Instead, start early with a simple question: 'If you could not speak for yourself, who would you want to make medical decisions?'
Do not assume the nursing home staff knows your loved one's preferences. They care for many residents and may default to aggressive treatments (like antibiotics or hospitalization) unless you explicitly document otherwise. Write down the goals and repeat them at every care conference.
Do not confuse advance care planning with a one-time signing of a legal document. The document is a tool, not the plan itself. The plan must be revisited as the disease progresses. A living will written five years ago may no longer reflect the person's current condition or wishes.
Do not think that palliative care means 'giving up.' Palliative care is about comfort and quality of life at any stage. It can include pain management, emotional support, and spiritual care. Many families regret not asking for it sooner. Ask the nursing home for a palliative care consult even if your loved one is not dying.
Do not ignore the role of the medical director. The medical director sets policies for end-of-life care in the facility. If you feel the staff is not honoring the advance care plan, request a meeting with the medical director. They can enforce the plan and educate the team.
Do not assume that hospice is only for cancer patients. Dementia is a terminal illness, and many people with advanced dementia qualify for hospice. The criteria include: inability to walk, speak, or eat, recurrent infections, and significant weight loss. Ask the doctor for a hospice evaluation if you see these signs.
Practical tools
The Conversation Project Starter Kit
A free, step-by-step guide to help you talk with your loved one about their values and wishes. It includes questions like: 'What matters most to you? What worries you about the future? How much are you willing to go through for a chance of living longer?' Use it before the nursing home admission. Download at theconversationproject.org.
Five Wishes Document
A legal advance directive that covers five areas: who you want to make decisions, what kind of medical treatment you want, how comfortable you want to be, how you want people to treat you, and what you want your loved ones to know. It is easy to understand and accepted in most states. Ask the nursing home social worker for a copy or download from agingwithdignity.org.
POLST (Physician Orders for Life-Sustaining Treatment) Form
A medical order signed by a doctor that translates advance directives into actionable orders for nursing home staff. It covers CPR, intubation, antibiotics, and feeding tubes. Ask the nursing home doctor to complete a POLST form with you and your loved one (if possible). This is especially important for people with advanced dementia.
Care Notebook (File of Life)
A physical folder kept on the refrigerator or in the nursing home room that contains: medication list, diagnoses, allergies, emergency contacts, advance directive, POLST form, and a one-page summary of goals. Use a bright red folder so it is easy to find. This tool is recommended by Home Instead Senior Care for emergencies.
Quarterly Care Conference Checklist
A simple list you bring to each meeting: (1) Review current condition and MDS changes. (2) Confirm the advance care plan is still accurate. (3) Ask about any new symptoms or concerns. (4) Discuss any recent hospitalizations or ER visits. (5) Update the POLST if needed. (6) Set a date for the next review. This keeps the plan alive.
Hospice Evaluation Request Script
When you suspect hospice is needed, say to the doctor: 'Mom is losing weight, has had two infections in the last month, and cannot walk or talk anymore. Can we have a hospice evaluation to see if she qualifies? We want to make sure she is comfortable and not suffering.' This opens the door to expert comfort care.
Discuss with your clinician
Ask the nursing home doctor: 'What is the facility's policy on advance care planning? Who is responsible for reviewing the plan regularly?'
Discuss with the doctor: 'If my loved one develops a urinary tract infection or pneumonia, what is the standard treatment here? Can we choose oral antibiotics only and avoid hospitalization?'
Ask the physician: 'Is a palliative care consult available in this nursing home? How do I request one?'
If considering hospice, ask: 'What are the specific criteria for hospice eligibility in dementia? Can we get an evaluation even if we are not sure?'
Discuss the risks and benefits of feeding tubes for advanced dementia. Research shows they do not improve survival or quality of life. Ask: 'What is the alternative for safe feeding?' (Hand feeding by staff is the recommended approach.)
Ask about the use of antipsychotic medications: 'What are the side effects? Are there non-drug approaches for agitation or hallucinations?' This is especially important for Lewy body dementia.
Ask the doctor: 'In a crisis, what is the safest way to ensure the advance care plan is followed without delaying emergency care? Should we have a specific stop-condition in the plan, like 'call the proxy first unless the person is unresponsive or not breathing'?'