13.3 Teaching End-Stage Disease, Pain, and Symptom Plans

13.3 Teaching End-Stage Disease, Pain, and Symptom Plans

HPCC tasks 4F Teach end-stage disease progression and 4G Teach pain and symptom management are skills tests. A packet left on the table is not teaching. The CHPN does not leave the home until a caregiver can teach back the plan in their own words, or until a different caregiver who can do so is identified.

Teach-back of PRN algorithms

A usable PRN card is short, generic-named, and sequential. Example the caregiver must be able to say aloud:

"If pain is 7 out of 10, I give oxycodone 10 mg. I recheck in 45 to 60 minutes. If pain is still 7 or higher, I call the hospice 24-hour number. I do not give a second tablet until I call, unless the written order already allows a second dose at a stated interval."

The same structure applies to dyspnea (morphine concentrate, then call), anxiety (lorazepam, then call), fever (acetaminophen if ordered, then call), and terminal secretions (repositioning and the ordered anticholinergic, then call — not suctioning until the patient gags). Use numbers the order actually contains. Do not invent "give extra if they look uncomfortable" as a verbal override.

Teach-back is the caregiver repeating the trigger, the drug, the milligram dose, the wait time, and the phone number. Asking "Do you understand?" and accepting a nod is not competency. If health literacy, language, vision, or panic blocks teach-back, simplify the card, use a professional interpreter, enlarge the print, demonstrate drawing morphine into a labeled oral syringe, and stay for a return demonstration. Document who passed teach-back. If no one in the home can do it, the IDG must change the plan — more RN visits, a different caregiver, or a different level of care — rather than hoping the night goes well.

What dying looks like, so 911 is not the default

Families call emergency medical services because dying looks like a crash. Teach the expected picture before the last 48 hours, then repeat it when signs appear:

• Cool, mottled knees and feet
• Oliguria or no urine
• Spending most of the day sleeping, then unresponsiveness
• Irregular breathing, including Cheyne-Stokes (crescendo-decrescendo with pauses)
• Noisy terminal secretions ("death rattle") from pooled saliva in a patient too weak to swallow — this is not drowning
• Open mouth, glazed eyes, jaw drop

These signs with an allow-natural-death / do-not-resuscitate plan mean: call the hospice 24-hour line, stay with the patient, and do not start chest compressions. If the family calls 911, paramedics may begin resuscitation the patient did not want. Teach the family to say, if they have already dialed: "This is an expected hospice death. Please do not start CPR. The hospice nurse is on the way." Then still notify hospice.

Do not promise the exact hour of death. Do teach that stopping oral intake, becoming unresponsive, and developing secretions are common, not evidence that the last morphine dose "killed" the patient. That myth drives both withheld analgesia and panicked 911 calls.

Written after-hours numbers

Every home gets a single-page instruction sheet and a refrigerator magnet or taped card with:

• Hospice name
• 24-hour triage number in large print (primary and backup if the agency uses both)
• Patient name and date of birth as the opener
• Last opioid dose time as a required sentence
• What to do while waiting: keep the patient positioned, give only the already-written PRN, do not drive to the emergency department for expected dying

Verbal-only numbers fail at 3 a.m. If the caregiver's phone is the only copy, text the number and leave paper. Confirm the caregiver can find the card during the visit.

Hospice first versus 911 first

Call hospice first for pain not relieved by the written algorithm, new agitation or delirium, new or worsening dyspnea, fever in a patient whose goal is comfort, catheter problems the nurse can manage, and expected dying.

Call 911 (and still call hospice) for fire, gas leak, violence, a caregiver who collapses and cannot be aroused, or a sudden event the family cannot manage (for example a fall with an obviously deformed hip if the family's goal includes emergency evaluation). If the goal is strictly home death and the "event" is expected dying, 911 is the wrong first call.

Continuous home care or GIP may follow a hospice triage call when symptoms blow through the home algorithm. That is still a hospice pathway, not a secret emergency-department admission the family arranges alone while enrolled.

Exam trap: Teach-back quotes the generic drug and milligrams, not "the pain pill." Expected dying is a hospice call. 911 is for true emergencies and for families who insist on resuscitation — and even then the CHPN still notifies hospice.