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. Barbara had handed him his prescribed morphine at his request. A hospice nurse called 911 after Mr. Yourshaw took the morphine. The hospice nurse and the police ignored Mr. Yourshaw’s written advanced directives, and he was hospitalized and treated in defiance of his end-of-life wishes. Joseph Yourshaw died at a hospital four days later.
Barbara’s prosecution lasted a year, during which it garnered national attention and was roundly criticized throughout the media. The charges against Barbara were dismissed when the judge ruled that there was insufficient evidence to send the case to jurors.
In Part 2 of our podcast conversation with Barbara, she explains how we can advocate for good hospice care for our family members and clients. As Barbara 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.”
Hospices are required to provide all the care related to a terminal illness, and are regulated under federal law at 42 CFR, Ch. IV, part 418. Among the crucial requirements hospices must follow, Barbara says, 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 is coming to light about 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 on vulnerabilities in the Medicare hospice program. Barbara also discusses a more recent OIG report highlighting hospice deficiencies that pose risks to Medicare beneficiaries and that recommends statutory remedies to sanction poorly-performing hospices as well as more public disclosure about them.
Barbara explains the importance of carefully selecting a hospice provider. She suggests asking for recommendations from friends and family members as well as professionals. She also stresses the importance of doing your own research to make sure that you are picking the right hospice. Barbara provides a list of questions you should ask when interviewing a hospice provider:
- 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,” Barbara advises.)
The best end-of-life care is based on the individual patient’s values and wishes. For this reason, Barbara stresses the importance of advanced directives, so the patient’s wishes are in writing. Barbara also believes in the importance of individuals being well-informed about the rights of the patient and the responsibilities of the hospice providers.
To listen to the full podcast episode, click here.
To read Part 1 of this two-part series, click here.