Hand.jpg (30942 bytes)End-of-Life Care in Rhode Island
Community State Partnership Planning Grant: Results of the Audit

Rhode Island was one of 15 states that received a planning grant from the Robert Wood Johnson Foundation. Through this planning grant we conducted an audit of deaths in 1997 and 1998 by speaking with bereaved family members and initiating community discussion groups to understand what Rhode Islanders see as the pressing and important issues around end-of-life care. Based on the results of this audit, we found three areas which we are targeting for improvement:

Advance Care Planning:
  • We found that 75% of persons who died in a nursing home had a living will or durable power of attorney;
  • Family members reported that he directive had no effect or caused a problem in 40% of the cases;
  • More than one in three (35%) reported 2 or more problems with communication.

Communication is a big thing.  There was no continuity with the doctors and we (family) were there every night and there was no contact with us at any time.  Phone calls were never answered.

 

Pain Management:
  • 50% experienced pain.
  • Two-thirds rated the pain as severe, i.e. moderately or extremely severe more than one half of the time;
  • 48% stated that pain treatment was not explained to them in a way they understood;
  • 25% believe more should have been done for the dying persons' comfort in the last month of life.

When my aunt was in the hospital, she was very agitated and seemed to be in pain and they hadn't done anything for her.  The nurses said there were no orders. So I finally got hold of the doctor after hours and he said "What do you want me to do?"

 

Addressing Spiritual Concerns:
  • 79% stated that a nurse really listened to their hopes, fears and beliefs as much as they wanted - YET;
  • Only 44% said someone spoke to them about their religious concerns;
  • 15% were referred to religious or spiritual leader.

I couldn't get a priest to see her and I waited 8 hours for him.   He never called or apologized.  Isn't that awful?


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