Module 5: Comfort Serves Presence

Organized surrender does not require pain. Managing pain is what palliative care is for. A person in uncontrolled pain is out of the window ~ braced against it ~ and can't say goodbye to anyone. Comfort is what makes presence possible.

Many families fear morphine. They worry it will hasten death or take their person away from them. Hospice teams use opioids to relieve symptoms, and that fear keeps many people in pain they don't need to be in. Opioids can cause drowsiness, and illness itself reduces alertness. If you are worried about sedation, say so. Ask the team how to balance comfort with your person's wish to be alert for the times that matter most. Follow the team's medication plan. Don't change it on your own.

Questions to Ask the Hospice Team

What is the plan for pain, and what do we do if it breaks through at night?

What other symptoms should we expect, and what helps them?

If my person wants to be more alert for a visit or a conversation, what can we adjust?

Who do we call, and when? What if nobody answers?

The Ice Cream Part

Comfort is not only medication. It is the food your person still wants, the music they love, the window open, the dog on the bed. Ask what would feel good today. Then do it. Offer small amounts of food or drink without pressure. If swallowing is hard, ask the team how to offer comfort safely. When food and drink are no longer wanted, ask them to show you mouth and lip care.

Decisions and Documents

Families often find out what their person wanted at the worst possible moment. Find out now, while your person can tell you.

Health care proxy (also called a health care agent or medical power of attorney): the person who makes medical decisions when your person can't.

Living will or advance directive: your person's written wishes about treatment.

POLST: a medical order signed by a clinician that tells emergency responders and hospitals what treatment your person wants. Some states call it MOLST, POST, or MOST.

DNR (do not resuscitate): an order not to attempt CPR.

Ask the team which of these your person has, where the originals are, and who needs copies. Keep them with the contact sheet, where anyone covering for you can find them.

Companion Workbook

Module 5: Comfort Serves Presence

Worksheet: Comfort and Questions

One page for your person's current concerns. Keep their words separate from your observations. Date any wishes they stated earlier.

Completed Example: Comfort and Questions

Fictional example. Elena supports her partner, Ana.

Worksheet: Who to Call

Copy the details from the team. Ask them to confirm anything missing. This is not a medication record.

Completed Example: Who to Call

Fictional example. The names and telephone numbers are invented. Use your own team's confirmed details.

Worksheet: Decisions and Documents

Fill this in with your person, and confirm with the team where each document belongs.