We want to place mom in hospice care but were denied, what should we do?

Bcarman asked...

My mom has end stage cirrhosis of the liver. A week ago she had very little quality of life. 5days ago she had a seizure and now has bleeding on the brain. Her dos are hopeful and excited when she moves a finger. But our family refuses to celebrate small movement. Today my dad asked for a hospice eval and was denied by an ethics nurse. Can anyone offer some insight on what to do next...we want peace for her.

Expert Answer

Audrey Wuerl, RN, BSN, PHN, is education coordinator for Hospice of San Joaquin in California. She is also a geriatric trainer for the End-of-Life Nursing Education Consortium (ELNEC), which promotes education in geriatric nursing and end-of-life care.

First, your mom is under the care of her primary physician. He or she is the one to consult regarding a referral to hospice. From your description, your mom would benefit greatly from hospice in that her pain and symptoms would be managed, as "curative" treatments are no longer an option. Secondly, it is ethically right to allow patients or their families to make choices regarding their medical care. Hospice care is one of the "options" that allow dignity and respect at end of life.

Does your mom have an Advance Directive stating her wishes regarding care should she not be able to speak for herself? This is a document that when property witnessed, becomes a legal guidelines that doctors, nurses, and hospitals must follow. Are you named as her agent? If you are, you can "speak" in her behalf.

Request a family conference with her physician, her nurse, and the social worker following your mom in the hospital. This is a meeting wherein the family and the healthcare providers look at the best options for the patient. Her doctors are hopeful when she shows some improvement"”this is natural; but it is also important to consider her quality of life. Hospice does not cause people to die, or speed up the process. In fact we are all about hope"”hope for pain to be controlled, hope for symptoms to be managed, and hope to have a peaceful life closure. Then, if hospice is the option you choose, request a referral from her regular doctor, her primary care physician.

The hospice and her physician will work together to determine if she is appropriate at this time--through diagnosis, prognosis of 6 months or less, and any supporting documentation such as labs, etc. People who need and request hospice services should not be denied.