Chapter 2: Preparing for death
As death nears
Because she was at home, in those later years, she knew I was “her person” even if she couldn’t speak.
People with terminal illness will generally experience changes in their physical abilities as illness progresses. Over time, they may develop new or progressing symptoms. Knowing what these changes are and working with the healthcare team in advance can help you feel more comfortable when these changes occur. Below are different ways you and the person who is ill can prepare. Click on each tab to read more.
Talk to your healthcare team about what to do if your family member experiences symptoms such as pain, shortness of breath, confusion, restlessness, or increased chest secretions. All of these symptoms can usually be managed at home, even if the person is unable to swallow medications.
Sometimes the healthcare team can anticipate when new challenges might arise and new medications might be required. In that case, you may be provided with a prescription so that you are ready for when the person who is ill experiences the change.
There are also other medication issues to consider. All of these can usually be anticipated and prepared for, often avoiding the need for hospitalization:
- Does the patient still need existing medications? Medications that are not needed to provide comfort (e.g., cholesterol medications) may be discontinued.
- Might any existing medications be harmful as the patient’s condition declines? For example, medication to lower blood sugar may cause new risks if the patient is no longer able to take in food.
- Is a plan in place to manage symptoms when pills or tablets become hard for the patient to swallow? Medication may then be administered under the tongue, with skin patches, by injections under the skin, or through other means.
Talk with your healthcare team about whom you should call if you need urgent help at home during the day or on evenings and weekends. Possible options include your family healthcare provider, a palliative care telehealth network, your
home care nursing office, or 811 or 911. Keep information about emergency contacts in a spot that is easy to find, such as on the fridge door.
Another transition that can be very difficult for family members is when the person who is ill is no longer able to participate in conversations or be aware of visitors. Caregivers may feel less comfortable providing care or giving medication without feedback from the person they are caring for. Caregivers may also observe changes in the patient (e.g., moaning or grimacing) and be unsure how to react. Again, talking to the healthcare team in advance can give you the knowledge you need to react to these situations.