Hospice now focuses on life quality

Dear Dr.?Roach: I was advised by a doctor at a reputable hospital to put my mother in hospice for congestive heart failure. She also has multi-infarct dementia. That was a year ago. Her vitals have been checked twice a week since that time and are always good. Her oxygen level also is very good. We never have had to use the furosemide medication for water retention. I am starting to think she might not have needed to be in hospice. During her third re-evaluation, a new doctor changed her hospice diagnosis to emphasize her dementia. I am her caregiver and do get some things from hospice that are helpful, but I have spent a year believing my mother was going to die very soon – maybe for no reason other than a doctor in an emergency room recommended hospice. – H.S.

Answer: Hospice is a philosophy of care that emphasizes reducing suffering and improved quality of life over treatments intended to be curative or disease-modifying, and it is appropriate when the harms of disease-modifying treatments outweigh the benefits. Eligibility for hospice requires the patient’s attending physician and the hospice medical director agree the person’s life expectancy is six months or less. However, physicians frequently are unable to make accurate predictions about length of life, and your mother’s situation of being in hospice for a year or more is not that uncommon. It may seem counterintuitive, but patients often live longer in hospice than comparably ill patients who do not choose hospice. In the specific case of congestive heart failure, hospice beneficiaries lived 100 days longer in hospice than those who were not in hospice.

My experience with my own patients in hospice, and in fact with my own family members, universally has been positive. I have found physicians usually refer to hospice too late in the course of the disease. While I understand you may feel misled in your expectations, I would urge you to consider her life has been of better quality and of longer duration than it might have been had you not chosen hospice.

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