A Bitter End, part 2: The hospice
Please note: This article is published as an archive copy from Philadelphia City Paper. My City Paper is not affiliated with Philadelphia City Paper. Philadelphia City Paper was an alternative weekly newspaper in Philadelphia, Pennsylvania. The last edition was published on October 8, 2015.
What do you do with a dying man who keeps telling you he's fine despite hurting all over?
Neal Santos
In print, this story was split across more than one issue because of its length. Online, we've split it into six chapters:
- The very old man who wanted to die
- The hospice
- The overdose
- The pro-life coroner
- The strange prosecution of Barbara Mancini
- The legal land mine, undefused
Or you can read the story as a single page.
Part 2: The hospice
On the Hospice of Central Pennsylvania’s consent-for-services form, the enrolling patient is asked to acknowledge that he understands the following standard things about what “hospice care” does and does not mean:
Hospice care focuses on comfort, relief from pain and other symptoms, and emotional and spiritual support rather than curative or life-extending treatment or interventions. I understand that certain medical procedures, such as [CPR], are not performed by … staff or volunteers.
Hospice services are not intended to take the place of care by my family … but rather to support them in my care.
Hospice services are provided primarily in the patient’s place of residence … through intermittent scheduled visits. Consultation and visits for urgent matters and pain and symptom control are available 24 hours a day, seven days a week.
I have a choice about the care provided to me. I may discuss and participate in developing the plan of care … [and] may refuse a particular treatment or service.
It took Mancini some work to sell her father on hospice care. It sounded to him like people would be coming into his house and telling him what to do. “He didn’t want them there,” says Mancini. “He only agreed to let them come in there because it would help out my mom.”
Hospice isn’t something you can just decide you’re ready for. Two independent doctors must rule that you have fewer than six months to live before you’re eligible for admission. Two doctors judged Yourshaw as such, and he enrolled in Harrisburg-based HCP for the first time in March 2012.
From the very beginning, Yourshaw’s hospice charts, which Mancini shared with City Paper, make him sound like he wasn’t the easiest patient. “You know the phrase ‘full of piss and vinegar?’” asks Mancini. A note made by his primary-care physician when he announced he would stop taking all medications sums it up pretty well: “Oriented and rational although disagreeing with pretty much everything I discussed with him.”
Entries on Yourshaw’s hospice charts sometimes make him sound like a cranky-old-man cartoon, though they consistently note that he’s alert with “judgment/insight intact”:
Pt. presented with his “usual grumpiness” and direct responses about “I have pain all over” and “nothing matters to me” responses
Pt … is exasperated and sighs heavily when queried
At end of visit pt refused to rate his pain, when asked pt puts his hands in the air and states “I don’t know” when asked if medicine worked pt again puts hands in air and says “I don’t know”
It wasn’t just difficult to treat Yourshaw because of “piss and vinegar.” He almost constantly refused to assess, talk about or accept any medication for his pain — the primary purpose of hospice care. He particularly seemed to dislike being asked to rate his pain on a 1 to 10 scale. On the second day of hospice records, he’s already having problems with it:
Patient describes constant body ache “all over.” Unable to rate pain using pain scale. Wife states patient’s pain is “3.”
For most of the rest of his records, he just refuses to pick a number or answer in the way the hospice staff wants, saying instead that he does have pain but he’s fine, he’s comfortable. This leads to the regular appearance of the phrase “comfortable despite pain” in Yourshaw’s charts.
The complacency and lack of follow-up that Mancini reads into “comfortable despite pain” still infuriates her as both daughter and a professional. “What they’re supposed to do is relieve the [immediate] pain by giving the person a high enough dose of short-acting agents to provide pain relief, then work on finding a longer-acting agent.
“So here’s my dad: He’s in pain every day, all day. You’re supposed to work at it and find a solution for the pain, find a medication that would work better” rather than “telling my mother, ‘Just keep offering it.’ It clearly doesn’t work!
“I don’t know if they just weren’t prepared to deal with someone like him — although, anybody in health care has to learn to deal with different personalities,” says Mancini. “Sometimes he was ornery with them. … There were times where he said, ‘I’m not takin’ any medicine.’ He definitely didn’t want to take any medicine for his blood sugar. But he was taking stuff for pain.”
Because whatever he told the hospice workers, Yourshaw was in pain. He refused prescription pain medications, but took lots of over-the-counter ones.
When Mancini got her father’s charts, they didn’t reflect that hospice workers had realized why Yourshaw so adamantly refused pain medicine. She says her dad had gotten unpleasant side effects from the first narcotic pain medications he’d tried, but the dosage he’d been prescribed hadn’t been high enough for effective pain relief. Instead of asking for help, he just “stopped taking it. He wasn’t the type of guy to go back to the doctor to get more stuff. Started taking Tylenol and Motrin again.” After a few tries at finding a medication that would work for him, the hospice charts reflect, nurses eventually seem to accept his word that Yourshaw really doesn’t want any medicine and is “comfortable despite pain.”
The second time Yourshaw checked into hospice, he was so adamant about not wanting medicine that hospice nurse Barbara Cattermole, who enrolled him, didn’t leave the standard bag of emergency medications at the Yourshaw home. At Mancini’s preliminary hearing, Cattermole testified: “He refused to take all medications. There was no meds. I didn’t even order an emergency kit because he refused to take any meds.”
An emergency kit, or e-kit, is a “just in case” supply of medications for a wide range of situations. The e-kit Yourshaw was issued at his first enrollment at HCP included lorazepam for anxiety, Haldol for hallucinations, prochlorperazine for vertigo and nausea … and morphine for pain.
“He was provided all these medicines, no questions asked, in a bag,” says Mancini. He didn’t use them, so “when he was discharged, we handed it back.”
In Yourshaw’s last month of life, he was in a lot more pain, and Mancini says she finally was able to talk him into considering morphine as an alternative to Tylenol. Since Cattermole hadn’t left the e-kit, on Feb. 1, 2013, Mancini called HCP and requested a morphine prescription. This call would later be used in court as a sign of premeditation.
“I spoke with Deborah Hornberger, who’s the nurse supervisor,” Mancini says, “and she actually gave me a hard time on the phone — told me it wasn’t appropriate for him to have morphine.” Mancini says Hornberger told her, and it’s in hospice records, that because Yourshaw hadn’t been on opiates before, “it would be more appropriate for him to be on Percoset. Which is an opiate! It didn’t make sense. But she argued with me.”
Given the hospice’s policy that “pain and symptom control are available 24 hours a day, seven days a week,” Mancini was further unsettled when the morphine she’d requested that morning didn’t arrive until 8 p.m. the next evening, 36 hours after she’d called. And when it arrived, Mancini recalls thinking that, based on her 30 years of experience medicating pain in the ER, the dosage seemed really light. “Two-and-a-half milligrams of oral morphine, for someone in severe pain? It’s a joke.” But, she says, she figured hospice wasn’t her specialization, and didn’t bring it up.
“I wasn’t comfortable with how it was going at the time, but I didn’t realize the extent of how poorly they were doing it until after all this happened — after I got the records.”
The Hospice of Central Pennsylvania declined to comment on anything specific for this story. CEO Gil Brown passed along only this statement: “While we cannot discuss a specific case, we’re confident that our physicians, nurses, social workers and chaplains provide appropriate and necessary care for our patients. Our standards of care meet all legal and regulatory requirements and comply with state licensing and scope of practice requirements.”
Mancini got her father’s hospice records in discovery after her preliminary hearing — at which Senior Deputy Attorney General Anthony Forray’s argument for potentially sending her to prison for 10 years included, “This was a lot more than simply handing a bottle of medicine to someone. … There was no morphine in the home. Who was responsible for requesting the morphine to be in the home? The defendant.”
Hornberger was called as a witness to back this up, and testified: “Barbara called me specifically asking me to order morphine for her father. I did tell her that we should try other medication before going to morphine. She said that she was an RN and knew and still insisted on having morphine ordered.”
Forray confirms that his witness had had a chance to review Yourshaw’s hospice records, noting that “The records I have in my possession I believe were obtained from [arresting officer] Captain [Steve] Durkin who, in turn, had obtained them from the coroner.” In other words, pretty much everyone but the defense had seen the records at this point.
Which is why it’s surprising that not one person noticed that Joseph Yourshaw had been prescribed a significantly stronger dosage of morphine by the attending physician at his hospice enrollment, weeks before Mancini called. Admittedly, the records are dense and difficult to read. But it’s right there in the first pages of Yourshaw’s file: “‘Morphine for pain and for shortness of breath, 5-10 mg every 2-4 hours as needed. May titrate 1-2 times the base dose.” The prescription had just never arrived — it was part of the e-kit that Cattermole hadn’t left at the Yourshaw house. “We were never notified that these medicines were ordered, we had no clue!” says Mancini.
The morphine that would have come in the e-kit was stronger than the dosage Mancini had thought seemed a little weak: “He could have had as much as 20 milligrams every two hours. What he ended up getting, ultimately, was 2.5 milligrams every four hours. A fraction” of what the physician initially judged to be appropriate.
Mancini and her lawyer were baffled that nobody had noticed the original prescription — not just in court, but back when she’d first called. “They have electronic health records — it would have been right there for [Hornberger] to see it” when they spoke on the phone, says Mancini.
Other things in the charts further confirmed the uneasiness Mancini had felt. She was surprised to find out that it had taken Hornberger more than six hours to get in touch with Yourshaw’s attending physician — and that that physician doesn’t appear to actually have been in the same room as Yourshaw until after his overdose. Mancini believes very strongly that “no physician ever spoke to him, touched him, examined him” based on the lack of physician contributions to Yourshaw’s charts aside from the occasional signature. You can’t prove a negative that way, but HCP declined to answer any questions.
The Medicare code has a long list of conditions of participation for hospices — standards providers must adhere to to be able to bill Medicare for services. The language, seeing as this is the government, isn’t the clearest. One is patient’s rights, and the first thing on the list is “receive effective pain management and symptom control from the hospice for conditions related to the terminal illness.”
Mancini says HCP was too willing to accept her father’s stoic front at face value, when the repetition of conflicting information — reporting that he simultaneously had pain and was comfortable — should have prompted a closer examination by a physician. “I firmly believe that there was never more than a token effort by the hospice to find an agent and a dosage that would effectively manage my father’s pain,” she says.
