Passing Away at Home｜The Final Journey in Familiar Surroundings

When a family member is living with a terminal or irreversible illness, many families hope that they can remain at home and complete the final journey of life in familiar surroundings, accompanied by their loved ones.

However, “passing away at home” is not a decision to be made only at the final moment. Medical follow-up, end-of-life care, medical certification and transportation arrangements after death should all be confirmed in advance while the patient’s condition remains stable.

The clearer the preparations are, the more the family can focus on accompanying their loved one when the time comes, with less confusion and distress.

Important reminder: If a family member suddenly becomes unresponsive and there has been no previous end-of-life care or arrangement for passing away at home, or you are uncertain whether they have passed away, you should call 999 immediately and follow the instructions of the emergency services personnel.

Step 1: Confirm Whether the Patient Is Suitable for Passing Away at Home

Before making any arrangements, the family should first discuss the following with the attending doctor or medical team:

• Whether the illness has entered a terminal or irreversible stage;
• Whether the patient personally wishes to remain at home;
• Whether the family is able to manage the day-to-day care;
• Whether the home environment is suitable;
• Whether a doctor or nursing team will be available to provide support if the patient’s condition deteriorates.

Arranging for a patient to pass away at home requires consideration of the patient’s wishes, medical condition and the family’s caregiving capacity. It is not suitable for every case.

Step 2: Confirm in Advance Which Doctor Will Provide Follow-up Care

The most important question for the family to clarify in advance is:

Which doctor should be contacted after the patient passes away at home?

Whether a doctor can issue a Medical Certificate of the Cause of Death depends on the patient’s medical history, treatment and consultation records, whether the cause of death is clear, and the doctor’s professional judgement.

The family should not wait until their loved one has passed away before trying to find a doctor who provides home visits. It is best to confirm the following in advance:

• The doctor responsible for following up the patient’s condition must have assessed the patient within the previous 14 days;
• Contact arrangements during and outside normal office hours;
• Whom to contact first if the patient’s condition suddenly deteriorates;
• Whether the doctor can arrange a home assessment based on the individual case;
• The circumstances in which an ambulance should still be called.

Step 3: Understand How to Provide Care During the Final Stage of Life

When the patient enters the final stage of life, they may experience a reduced appetite, difficulty swallowing, changes in breathing, noisy breathing, drowsiness or reduced responsiveness.

The family should ask the medical team in advance about:

• Which changes are part of the expected progression of the illness;
• How to manage pain, shortness of breath or agitation;
• When medication should be used;
• What to do if the patient is unable to swallow;
• The circumstances in which a doctor should be contacted immediately.

All medication should be administered according to the doctor’s instructions. Family members should not increase the dosage or combine it with other medication without medical advice.

Step 4: Prepare Important Documents

The family can prepare a document folder in advance and keep it in a location known to all primary caregivers.

The documents may include:

• The patient’s identification documents;
• The most recent discharge summary and medical records;
• A list of current medications;
• Contact details for the attending doctor and nursing team;
• The advance care plan;
• The advance directive or Do-Not-Attempt Cardiopulmonary Resuscitation document;
• Details of medical or funeral services that have already been contacted.

If the patient’s condition suddenly deteriorates, the family will not need to search for documents at the last moment.

Step 5: Assign Responsibilities Among Family Members in Advance

Caring for a patient with a terminal illness should not be left to only one family member.

Family members can divide the responsibilities in advance. For example:

• One person is responsible for communicating with the doctor;
• One person is responsible for medication and care records;
• One person is responsible for informing relatives and friends;
• One person is responsible for preparing documents;
• One person is responsible for arranging subsequent transportation and funeral matters.

A clear division of responsibilities can reduce the pressure on the primary caregiver and help prevent confusion during an emergency.

Step 6: Check the Home and Transportation Environment

The family should also assess the practical home environment in advance, including:

• Whether there is sufficient space beside the nursing bed for caregiving;
• Whether an oxygen concentrator, wheelchair or other care equipment is required;
• Whether the building’s lifts and corridors provide convenient access;
• How medical or relevant personnel can enter the building during the night;
• Whether the building security staff or management office should be informed in advance;
• Whether any elderly people, children or pets in the home require separate care arrangements.

These arrangements may appear minor, but they can directly affect whether the final stage proceeds smoothly.

What Should the Family Do When Their Loved One Passes Away After Arrangements Have Been Made for Passing Away at Home?

If the patient has a terminal illness, has been receiving ongoing medical follow-up and the family has already made arrangements for the patient to pass away at home, the following steps can be taken.