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Subject:Family Survivor Care

Posted by: Kathleen Davis M.S.,R.N., C.P.N.P.  Doctor of Nursing Practice Student/former patient family

   Our family’s journey at MD Anderson began one summer when my husband, Robert Allen Davis, was diagnosed with Stage 4 B-Cell Follicular Lymphoma. He was a healthy 6’6” entrepreneur and basketball lover. He did everything you are supposed to do to avoid cancer and remain healthy, but as we all know, there are no guarantees. When he was diagnosed, no one in the local oncology group could see him for 4 weeks – unacceptable to me as his wife of 37 years and also as a health care provider. I called MD Anderson on a Thursday, we flew to Houston from Michigan, and he was admitted and started treatment within 5 days of my initial call. Over the next 16 months we had an amazing journey with remissions, reoccurrences, many, many hospital admissions, and outpatient visits. Throughout it all, the staff at MD Anderson was remarkable: the doctors were knowledgeable and decisive, the nurses caring and personable with just the right mix of empathy and professionalism. Even the janitors it seemed were willing to give us a hug on bad days. It was truly gratifying to be surrounded by competent professionals who seemed to care so much, especially when our family was so far away. Unfortunately, at the end of 16 months we returned home to Michigan with hope exhausted and all avenues explored. The wonderful, amazing man, that my husband was died at home surrounded by my children and me.  It is now a few years later, and I am a student in a doctor of nursing practice program, at the age of 65. In thinking of healthcare policy and advocacy, I was reminded that in spite of all of the wonderful care and compassion that we received from everyone at MD Anderson, I or my family never heard a word from them after he died. Not from one doctor, one nurse, not from anyone. I am here now, today, as an advocate for all of those family members who have experienced what I felt. I felt like we and particularly he, didn’t matter enough for anyone to care that he died. All of the wonderful feelings I had about our experience seemed to pale in the face of feeling abandoned. Is there a policy regarding contact with the family of a deceased patient? Many states have passed laws making it illegal to use expressions of condolence or similar communications from healthcare providers after patient death as inadmissible in malpractice law suits. It is inconceivable to me; still to this day, that with the level of compassion and professionalism at MD Anderson, this desertion of a family at the time of their greatest need could be acceptable. If there is a policy against contact with bereaved families, I would respectfully ask you to consider revising it, and if there is no policy, there should be one mandating some form of bereavement contact.

Posted: 17 Feb 2013 10:21 AM
Originally Posted: 17 Feb 2013 10:15 AM
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