How to Get Good Hospice Care

Barbara Mancini, RN, MSN

In February 2013, Barbara Mancini was arrested in Pottsville, Pennsylvania, and charged with aiding the attempted suicide of her dying 93-year-old father, Joseph Yourshaw. Ms. Mancini, a registered nurse in Philadelphia, had handed him his prescribed morphine at his request. After Mr. Yourshaw took the morphine, his hospice nurse called 911. The hospice nurse and the police ignored Mr. Yourshaw’s written advance directives about the kind of care he wanted at the end of his life, and he was hospitalized and treated in defiance of his wishes. He died at a hospital four days later.

Ms. Mancini’s prosecution lasted a year, during which the case garnered national attention and was roundly criticized in the media. The charges against Ms. Mancini were finally dismissed when a judge ruled that there was insufficient evidence to send the case to jurors.

In the years since, Ms. Mancini has become a vocal advocate for improved end-of-life care.  She believes that one of the main reasons for the ordeal that her father had to endure in his final days was the failure of his hospice provider to deliver the care he was entitled to.

In a podcast conversation with ElderLawAnswers, Ms. Mancini explains how families can advocate for good hospice care for their loved ones and avoid the nightmare that she and her father endured. As she says in the podcast, “My biggest regret is that I didn’t do more to research hospice care. . . . Hospice is a vital end-of-life care option. The problem is that hospices vary greatly in the quality of care that they provide.”

Medicare's hospice benefit covers any care that is reasonable and necessary for easing the course of a terminal illness. Among the crucial requirements hospices must follow are that a patient has a right to receive effective pain management and symptom control, and that the hospice must provide care that optimizes comfort and dignity, with the patient’s needs and goals as the top priority.

Many people are satisfied with their hospice care. But information has come to light of problems with some hospice providers. The U.S. Department of Health and Human Services Office of Inspector General (OIG) issued a disturbing 41-page report in 2018, finding that hospices do not always provide needed services to beneficiaries and sometimes provide poor quality care. A 2019 OIG report highlights hospice deficiencies that pose risks to Medicare beneficiaries.

These revelations underline the importance of carefully selecting a hospice provider. Ms. Mancini suggests asking for recommendations from friends and family members as well as professionals. But she also strongly advises doing your own research to make sure that you are picking the right provider, and she offers a list of questions to ask when interviewing a hospice:

• Is staff available 24 hours a day, 7 days a week?
• How do you ensure that patients obtain their desired level of comfort?
• Who will direct the hospice patient’s care?
• What education is provided for the patient and caregivers?
• Will you ever override a patient’s advance directive? Under what circumstances?
• How many patient and caregiver complaints were received in the last year? How were they resolved?
• How many patients and caregivers have terminated services? What are the reasons?
• Is the hospice concerned about opiate addiction in its patients? (“If the answer is yes, run, don’t walk, away from that hospice,” Ms. Mancini counsels.)

The best end-of-life care is based on the individual patient’s values and wishes. For this reason, Ms. Mancini stresses the importance of advance directives, so the patient’s wishes are in writing. She also believes in the importance of individuals being well-informed about the rights of the patient and the responsibilities of hospice providers.

Listen to the full podcast episode. This is Part 2 of a two-part interview with Ms. Mancini. Check out Part 1 as well, in which Ms. Mancini recounts the events that led to her prosecution for her father’s death.

For more on hospice care, click read this article and and this one.

Find more information on end-of-life decision making.