Hospice Care From A Caregiver’s Perspective

The purpose of hospice has been previously outlined.  It is important to remember that hospice is for comfort, and by bringing hospice on board, you are not ‘giving up’.  Some patients live for a long time while receiving hospice. Hiring hospice means you are looking for comfort for your loved one, not planning on imminent death.  For the GBM caregiver, hospice and its quality can vary greatly.

Agency Selection- Most large agencies offer similar services and the ‘comfort’ drugs offered are similar.   Most important than selecting the agency, is the selection of the actual hospice nurse. Yes, you can have input in selecting the nurse.

 Advise the agency you need the nurse to be selected for your loved one based on your specific needs, not based on who comes up next on the computer for assignment.  Ask for a hospice nurse with many years of experience. Avoid nurses new to the hospice field. Insist on a nurse with experience in GBM.

Hospice can be easily received at home.  At times when symptoms cannot be controlled at home, the patient will be taken to the inpatient unit of the hospice agency until the patient is stabilized.   The best hospice nurse will stay ahead of the curve, give medications prophylactically and their patients will never end up in the inpatient unit. Inquire of the agency and the nurse as to how often their patients need to go inpatient.   Some hospice nurses are so extremely skilled that their patients never need to spend time in the inpatient unit. This is the nurse you want!

Fire the hospice nurse if you are not happy.  You have that option. Speak to the head of the hospice unit.   They may be called nurse manager or have other titles. Keep in mind the purpose of hospice is to keep your loved one completely comfortable.  If your loved one is not completely comfortable, a call to the nurse manager is in order.

Hospice Comfort Kits

At the time you hire hospice, you will be given a ‘comfort kit’ of medications designed to keep your loved one comfortable.  They generally consist of morphine and a sedative. The doses can be increased substantially as needed. It is important to use the medications as directed.  Many caregivers are hesitant to administer these medications for various reasons. Remember that these medications are for the comfort of your loved one. If comfort is not achieved in administering the recommended doses, contact the agency immediately.   They can adjust doses and send emergency nurses 24/7.

Always remember, you are in control of the care for your loved one.