Hospice Care Reliability Seems To Be Declining
Hospice care agencies pledge to give their patients ‘round-the-clock care, aiding with their physical, mental, emotional and spiritual needs. There are 4,000 such agencies in the U.S., and the industry is a very lucrative one that served approximately 1.4 million Medicare patients in the U.S. in 2015 alone, according to official reports. But, this pie-in-the-sky pledge doesn’t always play out as planned. Just ask Patricia Martin.
Martin entrusted the care of her now-late husband, Dr. Robert E. Martin, or “Dr. Bob” as most of his own patients knew him, to Mat-SU Regional Home Health and Hospice after the 66-year-old’s prostate cancer had reached his brain. Dr. Bob was a well-known family physician who had served the Wasilla, Alaska, community for more than 30 years.
In the final days of Dr. Bob’s life, the man was in constant, agonizing pain, and his wife began demanding liquid methadone to put him at ease, but her requests fell on deaf ears. Patricia and her family were put in the difficult position of requiring constant hospice care assistance during the holiday season when the center was understaffed.
Patricia waited four days to get the pain pills she asked for, after having been told the physician she was trying to reach was on vacation, then simply asleep. By the time the medication had reached her, her husband could no longer swallow pills.
The hospice care center instructed her to crush the drugs, mix them with water, and squirt the mixture into her husband’s mouth. It took a total of six days to finally get the liquid methadone she has originally requested, and her requests for a catheter were denied, so she was forced to constantly change her husband’s wet clothing and bedding.
“I thought if I had hospice, I would get the support I needed. They basically said they would provide 24/7 support,” she said three years after cancer took her husband’s life. “It was a nightmare.”
Bob Martin died just after midnight on Jan. 4, 2014. “It was just sheer chaos,” Patricia said. “It makes me wonder about other people in this situation. What happens to them?”
Six weeks after Bob died, Patricia filed a complaint against Mat Su Regional with the Alaska Department of Health and Social Services. The agency’s investigation concluded that the agency failed to provide adequate end-of-life care, including providing comfort in his final days.
Families like Patricia’s across the U.S. have been met with delays, no-shows and unanswered calls from their hospice agencies, according to a Kaiser Health News investigation which took a look at 20,000 government inspection records. There have been over 3,200 complaints filed with state officials over the past five years, and very rarely have hospices been reprimanded for poor care.
The mission of hospice agencies is supposed to be to offer peaceful, holistic care, and to leave end-of-life decisions to patients and their loved ones. While the majority of hospice services are covered by Medicare, some care is paid for by private insurance companies, Medicaid and the U.S. Department of Veterans Affairs.
To get paid by Medicare, agencies must out a specific plan of care for each patient, be on call 24/7, outline in each patient’s care plan what services will be provided, when, and by whom, and update that plan every 15 days. Almost half of hospice patients receive this care in the comfort of their own homes.
“I would venture to say whatever measure you want to use, there are an exponential number of positive stories about hospice that would overwhelm the negative,” said Jonathan Keyserling, National Hospice and Palliative Care Organization’s senior vice president of health policy. “When you serve 1.6 million people and families a year, you’re going to have instances where care could be improved.”
However, this doesn’t excuse the horror stories, according to Amy Tucci, president and chief executive of the Hospice Foundation of America. “It’s like medical malpractice. It’s relatively rare, but when it happens, it tarnishes the entire field,” she said.
Hospice care in the U.S. was started by religious and non-profit groups aimed at providing humane care at the end of life. Yet, today, many providers are for-profit companies and publicly traded firms. This, unfortunately, has caused a shift away from caring about patients and an increasing focus on caring for pocketbooks.