When a family chooses to support a loved one at home through the final stage of life, one of their greatest concerns may be: “What should we do when the moment comes?”
But planning for end-of-life care at home often begins well before that moment. Families may need to consider what kind of care the patient can receive at home, how symptoms will be managed, what the patient wants for their future care, and who to contact if their condition changes.
Knowing the arrangements in advance can help families feel less overwhelmed and focus on being with their loved one.
What Care Can Be Provided at Home?
Choosing home-based end-of-life care does not mean that medical care stops. With appropriate support, many aspects of care can continue at home, allowing the patient to remain in a familiar environment while receiving medical and nursing support based on their individual needs.
Depending on the patient's condition and care needs, support at home may include:
- - medical assessment;
- - symptom management;
- - professional nursing care;
- - medication management;
- - assistance with day-to-day care.
One of the important goals of palliative care is to help the patient remain as comfortable as possible. Advanced illness can cause a range of symptoms, including pain, breathlessness, constipation, nausea, loss of appetite, dry mouth and agitation. With assessment and guidance from doctors and the care team, many of these symptoms can be relieved through medication, nursing care and adjustments to the environment.
Pain, for example, is a common source of discomfort for patients with advanced illness. Doctors will consider the severity of the pain, the patient's condition and their overall health when prescribing appropriate pain relief. Opioid medicines such as morphine can be effective in managing moderate to severe pain. The use of morphine does not necessarily mean that a patient is “at the very end of life”.
Families should not adjust the dose of morphine or other prescribed medication without medical advice. If the patient experiences excessive drowsiness, unusual breathing, persistent vomiting or other concerning changes, the healthcare team should be contacted promptly.
Families do not need to work out the cause of every symptom themselves. What is more important is knowing what has already been discussed as part of the care plan, what can be managed at home and when it is time to ask for help.
For example, routine care and expected changes that have been discussed with the healthcare team may be managed at home according to the agreed care plan. However, families should seek medical advice if symptoms suddenly worsen, pain or other discomfort cannot be adequately controlled, new or unexpected symptoms appear, or they are unsure how to respond.
Before making arrangements for end-of-life care at home, it is important to discuss the patient's current condition and care needs with the healthcare team. This can help families understand what support may be needed and make sure there is a clear plan in place if the patient's condition changes.
Talk About What Matters to the Patient
Where possible, conversations about future care should take place while the patient is still able to share their wishes and take part in decisions.
This may include where they would prefer to receive care, how they would like certain situations to be managed if their condition worsens, and whether staying at home is important to them where appropriate.
These conversations do not have to happen all at once, and families do not need to have every answer immediately. The purpose is to give the patient an opportunity to express what matters to them and to help the family and healthcare team understand their wishes when planning future care.
How an Advance Medical Directive Can Help
An Advance Medical Directive (AMD) allows a person, while they still have the capacity to make healthcare decisions, to express in advance their wishes regarding life-sustaining treatment in specific circumstances.
Making an AMD does not mean giving up treatment or stopping all care. Patients may still receive treatment and care aimed at relieving symptoms and reducing discomfort.
Whether an AMD is appropriate should be considered based on the individual's circumstances and discussed with a healthcare professional.
What Changes Can Families Expect Near the End of Life?
As the patient approaches the end of life, they may experience some natural changes, such as:
- Sleeping more and spending less time awake
- Eating and drinking less
- Difficulty swallowing
- Reduced urine output
- Cooler hands and feet
- Changes in breathing patterns
- Reduced responsiveness to their surroundings
These changes do not necessarily mean that the patient is suffering. With appropriate palliative care, the healthcare team will aim to relieve pain, breathlessness and other discomforts.
Families can discuss these changes with the healthcare team in advance and ask what they may be able to manage at home and when they should seek further advice. Often, what family members can do is simple: stay with the patient, hold their hand and speak gently, letting them know that their loved ones are nearby.
If You Think the Patient Has Died
If there is an established home end-of-life care plan, and the patient appears to have stopped breathing and is unresponsive, follow the arrangements provided by the healthcare team and contact the designated doctor or care team.
If you are unsure whether the patient has died or do not know what to do, do not try to make the assessment yourself or move the patient. Contact a healthcare professional for advice first.
If the situation is unclear or there is no prior care plan, seek appropriate emergency medical assistance according to the advice of the healthcare team.
For families planning for a loved one to die at home, it is helpful to discuss these arrangements in advance. This includes knowing who to contact if the patient's condition changes, whether support is available during evenings, weekends and public holidays, and how death confirmation will be arranged.
After Death Has Been Confirmed by a Doctor
The doctor will confirm the death and arrange the necessary medical documentation according to the individual circumstances. The documents and subsequent procedures required may vary depending on the cause of death, medical records, applicable legal requirements and individual circumstances.
Families will then generally need to arrange death registration, funeral services and other related matters as appropriate.
For planned deaths at home, families are advised to discuss the arrangements for death confirmation and documentation with the healthcare team while the patient is still receiving care at home, rather than having to find out what to do at the time of death.
Planning Ahead Can Make a Difficult Time Less Overwhelming
No amount of planning can make saying goodbye easy. However, understanding what care can be provided at home, discussing the patient's wishes and knowing who to contact when circumstances change can help families feel more prepared.
Dying at home does not mean that families have to manage everything on their own. With appropriate medical and nursing support, planning ahead can give families greater clarity about what lies ahead.
For many families, the meaning of dying at home is not simply about avoiding hospital. It is about allowing a person, in the final stage of life, to remain in a familiar home, surrounded by familiar people, and to say goodbye in a way that reflects their wishes.
Read More:
Advance Medical Directive (AMD): A Complete Guide
End-of-Life Care at Home
