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Managing Mom's Pain When She is Being Cared for by Hospice

by Viki Kind, End-of-Life Expert
October 06, 2011

Question: My mother is at home and cared for by a hospice program. Still, she is in pain much of the time. Is the hospice not doing its job?

Answer:

Thank you for reaching out for help.  I am sorry she is still in pain.  Let me share with you a number of different things that might be going wrong.

1.  The hospice may not be doing a good job.  I would recommend you make a call to the medical director of the hospice today and ask that he or she come out to evaluate your mom’s pain today.  The medical director should be an expert in pain management and may have other ideas about how to manage your mom’s pain.  If you continue to have problems with this hospice, you can always change hospices.  Just let your mom’s doctor know what is happening and the doctor can make a new referral within 24 hours.

2.  Another possibility is that your mom is one of the few people whose pain can’t be controlled.  It is a very small number of people who have what is called, “unremitting pain,” which means the pain can’t be stopped.  To see if there are any options that haven’t been tried, have the medical director call Pal-Med Connect at 1-877-PALMED4  (1-877-725-6334) for professional advice.  Pal-Med Connect is a free service provided by San Diego Hospice.  The San Diego Hospice is one of the most famous inpatient hospices in the world.  The doctor has to call this number.  This is not for patients or families to call. 

3.  It is possible that your mom will need to decide if she would like to have more pain control which will make her very sleepy or unconscious, or if she would prefer to be more alert and still have some pain.  This is a personal choice as she will have to live with the consequences of this decision.

4. Lastly, there may be existential pain.  That is pain that doesn’t come from the body but from emotional and/or spiritual suffering.  Make sure that she is getting the emotional and/or spiritual support she needs.

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Viki Kind is a clinical bioethicist, professional speaker, and hospice volunteer. Her book, The Caregiver’s Path to Compassionate Decision Making: Making Choices For Those Who Can't,” guides families and professionals through the difficult process of advocating for those who can no longer speak for themselves. She has recently launched a DVD that includes a template to create a quality-of-life statement.

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