Module 9: The Final Days

The final days usually bring more sleep, less eating and drinking, changes in breathing, and cooler skin. Ask the hospice or palliative team what to expect for your person, which changes mean you should call, and whom to call at night. This is the body withdrawing on its own. It is not a failure of anything you did or didn't do. Call the team promptly if a change is sudden, if your person seems distressed, or if you are unsure. Pain, struggling to breathe, and new agitation are not things your person has to endure.

Restlessness and Confusion

Some people become restless or confused near the end ~ picking at the sheets, trying to get up, calling out. It is common, and it can often be treated. Call the team.

Keep Talking

A small 2020 study found brain responses to sound in hospice patients who could no longer respond. It doesn't tell us how much a dying person understands. Talk to them anyway. Tell them who has come to visit. Tell them what you want them to know. It counts.

Touch

Go by what your person has wanted. Some people want a hand held; some don't. Ask, if they can answer. A hand on the shoulder, a cool cloth, lying beside them ~ follow their lead, not the picture in your head.

The Vigil

Make a roster so people rest, with a backup. A vigil that exhausts everyone puts everyone out of the window.

Use the window check from Module 2 every time you take your seat.

Let your person have quiet if that seems to be what they want. Presence does not require talking.

Keep family disagreements and travel plans out of the room.

Some people die when everyone has stepped out of the room. If that happens, it is not because you left.

In the Hospital or ICU

Many people die in hospitals, and many in intensive care. The window is hardest to stay in there: the alarms, the machines, the rotating teams, the decisions made in hallways.

When I worked in the ICU, I often went with doctors to talk with families and insisted they give two answers: the best case and the likeliest case. Not to discourage anyone. To prepare them for what was coming. Ask for both.

What is the best case? What is most likely?

Does my person understand their condition? What have they said they want?

If we don't do this, what will you do for comfort?

Can palliative care join us? It can be added alongside treatment.

If your person understands their condition and still wants everything done, that is their choice, and it deserves support. Everyone in the room is entitled to an opinion ~ doctors, nurses, family. No one is entitled to pressure an uncertain family toward a decision based on beliefs your person doesn't share.

Bring your person's documents from Module 5. The health care proxy speaks for your person's wishes, not the family's hopes.

If the decision is to stop life support, ask what will happen, how comfort will be managed, and how long it may take. It can be minutes. It can be days. Decide if you want to be there.

Ask about visiting hours, music, photographs, a familiar blanket. Rules often bend near the end. Ask.

The Moment of Death and the Hours After

For an expected death at home under hospice, call the hospice, not 911. Paramedics may be required to attempt resuscitation unless they can verify an applicable DNR order or a POLST that says not to attempt CPR. The hospice nurse comes to the home, confirms the death, and helps with what comes next.

There is usually time. Ask the hospice how much time local requirements allow. Unless your person's wishes or your faith say otherwise, you may be able to sit with your person for an hour or for several. You can hold them, talk to them, wash their hands and face, dress them, brush their hair, light a candle, open a window. Call the people who want to come. Children can say goodbye too, if they choose.

When you are ready, you or the hospice nurse will call the funeral home, and they will come for your person. Some families leave the room. Some walk beside their person to the door. In a hospital, ask the nurse how much time you can have before your person is moved.

Companion Workbook

Module 9: The Final Days

Worksheet: Vigil and Contact Sheet

For the next stretch of coverage. Share it with the supporters on the roster. Record only hours people have agreed to.

Completed Example: Vigil and Contact Sheet

Fictional example. Mara supports her partner, Ellis, at home with hospice.

Worksheet: Words, Quiet, and Permission to Stop

Prepare a short visit. You can write without speaking.

Completed Example: Words, Quiet, and Permission to Stop

Fictional example. Leon prepares to visit his sister, Ruth.