Describe what you see and what the person feels
Specific observations help clinicians understand a problem. If the person can speak for themselves, begin with their description. For pain, note where it is, what it feels like, when it occurs, and how it affects sleep, movement, or eating. Tell the team what has helped and what has not. A short written record can be easier than relying on memory during a call.
- Include changes over time: Compare with the person’s usual day and say when the change began. Mention a new symptom even if you are unsure whether it relates to the illness.
- Explain the impact: “She cannot get comfortable enough to sleep” can communicate more than “she seems worse.” Share the person’s own words whenever possible.
A plan can include more than medicine
Depending on the cause of distress, clinicians may combine medications with comfort measures and changes in the environment. Help with positioning, a quieter room, mouth care, or the reassuring presence of someone familiar may be useful. Ask which measures are safe for this person, and request a demonstration. A symptom can have several causes, so report it rather than assuming one solution fits everyone.
Know the medication plan and the questions to ask
The prescriber should explain each medicine’s purpose, directions, expected effects, and possible side effects. Report inadequate relief or troubling effects so the clinician can reassess. Ask about constipation, nausea, sleepiness, confusion, and safe storage where relevant. Keep an updated list available to everyone involved in care and ask the hospice before changing or stopping a prescribed medicine.
- When directions feel unclear: Ask the nurse to review the written plan with you, then explain it back in your own words so misunderstandings can be corrected.
- When swallowing changes: Contact the team promptly to discuss how prescribed treatment can be given safely. Do not improvise a different route or preparation.
Emotional and spiritual distress deserve care too
Fear, loneliness, unresolved worries, and spiritual concerns can affect comfort. Ask whether the person wants company, privacy, prayer, a familiar ritual, or someone outside the family to talk with. There is no requirement to respond in a particular way. Tell the team about distress so counseling, social work, or spiritual support can be included in the plan.
Call when comfort changes
Contact the hospice promptly for new or worsening symptoms, pain that is not adequately relieved, anxiety that feels unmanageable, or uncertainty about the care instructions. Use the urgent or after-hours plan the team gave you instead of waiting for the next routine visit. If you cannot describe the problem precisely, start with “something has changed, and I need help.” Ask what to do now, what improvement to watch for, and when to call again.
Sources
Read more from the organizations behind this guidance.