What to Do When a Nursing Home Doesn’t Follow End Of Life Directives

I know I do not want any extraordinary medical measures done for me when death is nearing.  I want to be comfortable with pain medication, if I need it, but I don’t want tubes, IVs, antibiotics or diagnostic tests.  I have had this conversation  with my husband and my lawyer.  I have also had this conversation with my mother, husband and brother on their wishes.  All of us have it on a notarized document with our lawyers.  I have a healthcare proxy to oversee my desires.

Recently, I was really surprised to get a call from a client in regards to new medication orders for their loved one in a nursing home.  The loved one has a terminal illness with severe dementia.  The family has been made very clear with the staff that no life saving medications were to be given.  In fact, before the illness had progressed the loved one had said “even if I get a secondary infection, please do not treat it.  I will be fine to let death take me.”  The family was in the process of getting hospice involved with the care.

The nursing home had treated the loved one with aggressive antibiotics and inhalers without a phone call to the healthcare proxy.  The only way the proxy knew of the medications was when the bill arrived at the end of the month.  The staff didn’t really have any reason as to why the proxy wasn’t contacted.  They felt it was a comfort measure.

I do  not fault the nursing for caring.  However, the patient has a terminal illness with severe dementia and the family has had multiple conversations with staff on the care.  It was very difficult for the family to learn of this action.  There was no excuse for not contacting the family.

Is this a common occurrence in nursing homes?  What I have found is the communication with families is not always timely and can be after the event. I had a nursing home doctor tell me, she only calls families for emergencies.  She never calls with medication or diagnostic changes.  She lets the nurses make the calls.  The lack of communication is very frustrating for families.

What can you do?  Repeatedly remind the staff of your wishes. 1. Get a copy of the medical record and ask for all new orders and medical notes               be copied to you.                                                                                                                         2. Insist that you receive a phone call from the medical staff for any change in                 medications.                                                                                                                                   3.  Ask to speak with an administrator like the director of nursing or Executive                  Director and express your concern.                                                                                     4. Speak directly with the doctor and reiterate your wishes.                                                 5. If none of this works, then contact the state ombudsman and explain the                     situation.                                                                                                                                         6.  Consider hiring a patient advocate to oversee the care and ensure it  doesn’t                 keep  happening.                                                                                                                          7. If possible, get hospice involved.  They will certainly adhere to your wishes.