Hospice and end of life emergency¶

During home hospice care, sudden changes in breathing, restlessness, pain, or consciousness can cause anxiety for family caregivers. Knowing who to call and how to use hospice resources ensures your loved one remains comfortable.

Do this now¶

1. Call your hospice agency emergency phone number first: Call the 24/7 direct number provided by your hospice care team before calling 911. A hospice nurse can provide immediate phone guidance or dispatch an emergency nurse visit.
2. Do not call 911 unless instructed by hospice: Calling 911 automatically dispatches paramedics who are legally obligated to perform invasive resuscitation unless official Do Not Resuscitate (DNR) paperwork is physically present.
3. Locate and display official DNR orders: Place original Do Not Resuscitate (DNR) or POLST (Physician Orders for Life-Sustaining Treatment) documents prominently near the patient's bed or on the refrigerator.
4. Administer prescribed comfort medications: If instructed by your hospice nurse, administer breakthrough pain, anxiety, or secretion control medications from your hospice comfort kit.
5. Focus on comfort measures: Elevate the patient's head with pillows to assist breathing, apply cool damp cloths to their forehead, hold their hand, and speak in reassuring, gentle tones.

Understanding common end-of-life symptom changes¶

• Noisy or labored breathing (death rattle): Caused by relaxation of throat muscles and pooling of secretions. Elevate the patient's head and turn them onto their side. Hospice nurses can prescribe drops to dry secretions.
• Terminal restlessness or agitation: The patient may pick at bedsheets, hallucinate, or thrash around. Keep the room quiet, dim lights, and contact hospice for anti-anxiety comfort medications.
• Cool or mottled skin: Hands, feet, and legs may turn cold, pale, or bluish as circulation slows. Cover the patient with lightweight, warm blankets. Do not use electric heating pads.
• Changes in breathing patterns (Cheyne-Stokes breathing): Alternating between rapid breathing and long pauses lasting 10 to 30 seconds is a normal part of the dying process.

When death occurs at home under hospice care¶

1. Call the hospice agency to notify them. A hospice nurse will arrive to officially verify the passing and complete required paperwork.
2. There is no need to hurry. Take all the time your family needs to say goodbye.
3. The hospice agency will contact the designated funeral home or cremation service for transport when your family is ready.