Hospice is supposed to comfort the dying. For ‘Dr. Bob,’ it brought pain and chaos.

WASILLA – The family of Dr. Robert Martin, a longtime Wasilla family practice physician, expected hospice care would soothe his last days as cancer spread to his brain.

Instead, Patricia Martin says, the Mat-Su Regional Home Care & Hospice program brought suffering, stress and chaos as her husband writhed with bone pain and she struggled to get medication or a catheter to make him comfortable.

The man known as "Dr. Bob" — a hockey devotee who volunteered his time to sports teams and finished the Iditarod Trail Sled Dog Race in 1981 — died at age 66 in January 2014.

The next day, his wife wrote the hospital a searing letter detailing his harrowing "hospice nightmare in one week": a four-day delay getting painkiller prescriptions from a doctor on vacation or asleep; days without nurse call-backs or visits; and trying to gently cut off urine-soaked clothes from a man with agony radiating from the cancer in his ankles, knees, legs and hips.

"I've heard great stories of hospice care so it was truly a travesty they did not deliver like true hospices do," Pat Martin said Friday in an interview at her Wasilla home.

Four years after her husband died, Martin's story has emerged onto a national stage in a Kaiser Health News investigation of failures in the nation's hospice industry.

'I was promised help at the end'

Martin's is one of several grueling first-person accounts described in " 'No one is Coming': Hospice Patients Abandoned at Death's Door," a national inquiry into negligent hospice practices by Kaiser Health News, a nonprofit news service affiliated with the Kaiser Family Foundation.

A Kaiser Health News analysis of 20,000 government inspection records revealed missed visits and neglect are common for patients dying at home in the care of the nation's more than 4,000 hospice agencies.

"Families or caregivers, shocked and angered by substandard care, have filed over 3,200 complaints with state officials in the past five years," reporters JoNel Aleccia and Melissa Bailey discovered.

Those complaints led government inspectors to uncover problems in 759 hospices, with more than half cited for missing visits or other services they had promised to provide at the end of life, Kaiser Health News found.

The investigation showed that only in rare cases were hospices punished for providing poor care.

The Kaiser story references "horrifying reports" without victims' names that include a 31-year-old California woman "whose boyfriend tried for 10 hours to reach hospice as she gurgled and turned blue" and a dementia patient in Michigan who "moaned and thrashed at home in a broken hospital bed, enduring long waits for pain relief in the last 11 days of life, and prompting the patient's caregiver to call nurses and ask, 'What am I gonna do? No one is coming to help me. I was promised help at the end.' "

End-of-life-care in jeopardy

Pat Martin said this week that the Mat-Su Regional hospice administrator, Bernie Jarriel, and her husband's oncologist responded to the letter she wrote back in 2014 the day after Bob Martin died of metastatic prostate cancer.

She said none of the other three people copied ever responded, including a radiologist, urologist — and the hospital's CEO at the time, John Lee.

Along with that letter, Martin notified groups like the American Medical Association and American Cancer Society. The Medical Association passed her letter to the state Department of Health and Human Services Centers for Medicare and Medicaid Services. The resulting state audit in February 2014 found the hospital failed to properly coordinate services, jeopardizing his end-of-life-care, Kaiser reported.

The audit also found issues with the care of three other hospice patients in the Mat-Su Regional program.

A Mat-Su Regional Medical Center spokesman on Friday sent an email statement in response to questions from Alaska Dispatch News. The center is an acute-care hospital separate from the hospice operation.

"This event occurred almost four years ago," spokesman Alan Craft wrote. "The administrators overseeing operations at the time are no longer with either organization. None of the current leadership at the hospital or at Mat-Su Home Health & Hospice was here at the time of the incident."

A new hospice administrator with a clinical background, Joy Orr, and a regional director oversee two separate components — home health and home hospice, according to the email.

Craft said as a result of the state audit, home hospice changed policies and procedures to include better on-call coverage; back-up coverage for the medical director; and better continual education for members of the caregiver team.

A fighter

Bob Martin opened a practice in Wasilla in the late 1970s. He specialized in sports medicine, his wife said, and considered many patients his friends.

Martin's cancer diagnosis came about six years before he died. When it spread from his prostate, his wife said, he fought for treatment, seeking therapy in New York and Germany.

"He did not want to go into hospice," Pat Martin said. "He really wanted to fight it."

She convinced him not to pursue radiation treatments for the cancer in his brain. The treatment could make him go blind and might not even work.

Bob Martin entered hospice care at the end of 2013 on Friday, Dec. 27. It was the start of a holiday weekend leading into New Year's Day.

Decline into nightmare

An intake nurse told Pat Martin no pain medication could be called in until Monday, she said. The hospice doctor was traveling. A nurse was also supposed to call and check in that day.

But the doctor never called in the prescription for methadone, Martin said. The nurse never called.

So Martin called. She was told, she said, that the doctor couldn't write a prescription Monday because he was sleeping.

Her husband, still fully conscious and experiencing escalating cancer pain, "was extremely disappointed and upset that he had to wait another day, a total of FOUR days from being admitted for new pain medication, because the doctor was either traveling or sleeping or failed to write the prescription when asked," Martin wrote in her letter to the hospital in January 2014.

"I wonder if he has a conscience," Martin said Friday, of the doctor who didn't write the prescription. "How can he go to sleep knowing he has a dying patient who needs pain pills?"

'No nurse came'

She and her son applied and reapplied cold clothes to her husband's feverish body, Martin said Friday. She "slapped on" a number of fentanyl patches to get him through the agony of not knowing when painkillers would come.

"No nurse. No nurse came," she said.

The methadone tablets finally arrived Tuesday, Martin said. Another nurse came, and was very "personable and informative" but denied Martin's request for a catheter to help her husband urinate without the plastic urinal he was using, she wrote in her letter the day after he died.

The nurse suggested adult diapers because patients tend to pull out catheters. The family continued using the urinal: Her husband's pain was too great to allow for diaper changes, Martin said.

By Wednesday, New Year's Day, Bob Martin was semi-conscious and couldn't swallow.

Pat Martin said she asked for liquid methadone and was told the doctor was again sleeping, to rest for a night shift, and that one pharmacy was closed and another didn't have liquid methadone.

The nurse told her to crush the methadone pills, she said.

So, relying on her medical experience and her husband's doctor bag, she crushed the tablets with a meat tenderizing tool, scraped them off the counter with a butter knife, diluted them in water and squirted small amounts of the mix into the side of her husband's mouth with a syringe.

"I worked in a lab," Martin said Friday. She wondered how another caregiver without that kind of experience could have administered crushed pills.

But it still wasn't working, she said. He still seemed to be in a lot of pain.

Relief 

The next day, there was no nurse call or liquid methadone as promised. Martin called again. The nurse from the day before was on jury duty. She talked to a third nurse who said she'd have to leave a message for the doctor, who was again sleeping.

That's when Martin called the hospice social worker, and got the attention of Jarriel, the hospice administrator.

That same day, Martin said, Jarriel called a back-up doctor and obtained the liquid methadone prescription she'd been requesting for days. He also approved a catheter. Her husband got both Thursday night.

He slept, finally, through the entire night Thursday.

The next night, after midnight, Bob Martin died.

"I do believe he suffered greatly the previous days because of the lack of support and help by your agency," Pat Martin wrote in her letter.

A story finally told

Martin on Friday said it was the Kaiser story that finally broke the silence on her family's suffering and for that she was grateful.

Reliving the pain of her husband's death, and the torment of pressing for his care as he died, was worthwhile if hospice practices improve because of Kaiser's investigation, she said. A neighbor's husband died several weeks before Bob Martin did, and reported similar problems getting help.

Martin wondered how many unreported hospice horror stories are still out there.

"It was really hard to do this because it brings back everything," she said, her feisty toughness momentarily surrendered to emotion. "But I didn't want to let it go because I didn't want it to happen to anybody else."

Correction: An earlier version of this story incorrectly reported that Bob Martin's oncologist did not respond to Patricia Martin's letter about her husband's hospice care. This story has also been updated to correct various references to liquid methadone and liquid morphine.