An East Coast fisherman likely wasn’t expecting that a morning of crabbing at Matt’s Landing in New Jersey would lead to a rare and deadly infection—or highlight a major dilemma in the Medicare hospice program.
Specifically, the case is an example of how patients sometimes must forgo the comfort care that hospice can provide in order to keep receiving life-extending care such as dialysis. The situation is another example that shows how the system needs to change, Edo Banach, president and CEO of the National Hospice and Palliative Care Organization (NHPCO), told HHCN via email.
On July 2, 60-year-old Angel Perez went crabbing just before sunrise at a popular local hotspot. It seemed like a typical crabbing trip until the next day, when Perez’ right leg became swollen, turned red and broke out in blisters.
While crabbing, Perez had apparently come in contact with the vibrio vulnificus bacteria, which, in turn, infected his bloodstream, the Cumberland County Department of Health reported. If not caught in time, vibrio vulnificus can cause flesh-eating disease, or necrotizing fasciitis.
About 80,000 Americans get some form of vibriosis each year, according to the Centers for Disease Control and Prevention. Most cases are estimated to be brought on by eating contaminated food, typically resulting in about three days of illness with no lasting effects.
People with compromised immune systems, especially those with chronic liver disease, are more likely to get vibrosis. Perez had been battling Parkinson’s Disease prior to being exposed to the flesh-eating bacteria.
About one in four vibrio vulnificus infection cases ends in death.
In addition to being a tragic story, Perez’s high-profile case once again shines a light on a serious dilemma that many patients face when considering hospice care.
Hospice care, covered by Medicare, Medicaid and most private insurers, is benefit that prioritizes palliative care over curative care for individuals with a life expectancy of six months of less. Medicare does not pay for dialysis treatment and hospice care at the same time, though, so patients receiving treatment for kidney failure have to willingly give up life-prolonging care to receive various hospice offerings designed to support comfort and bereavement.
Roughly half of all Medicare beneficiaries die receiving hospice care.
Only 20% of Medicare patients with end-stage renal disease use hospice prior to death, however.
Family members are reportedly looking for a long-term health facility capable of attending to Perez’s unique and growing needs—including dialysis—as he continues his battle with the infection.
Hospice services were initially considered, buy quickly determined to be insufficient, according to a GoFundMe page with updates on the fisherman’s condition.
“While the idea of using a hospice facility was briefly considered, the decision was ultimately made the it wouldn’t adequately see to his most pressing needs,” a recent update stated.
Doctors at an urgent-care facility first thought Perez had a minor bacterial infection, The Washington Post reported. On a second trip to a hospital’s emergency room, doctors diagnosed cellulitis. It wasn’t until a third trip that they started to suspect the flesh-eating bacteria.
Bacteria had reportedly found an open sore or a cut on Perez’s ankle.
“Hospice was created to focus on comfort measures that are not, by design, life-extending,” NHPCO’s Banach said. “Dialysis is generally thought of as an intervention intended to lengthen a person’s life. In the case of the individual in New Jersey, palliative care services may allow this man to continue with dialysis but provide measures to decrease his pain and suffering.”
Besides turning to hospice less frequently, Medicare patients receiving dialysis have been shown to utilize hospice care for shorter periods when they do.
“Medicare generally does not pay for concurrent palliative and curative services. This is wrong,” Banach said. “This is why we are working on building a health care delivery system that would allow for person-centered, interdisciplinary care that does not require a patient to forgo beneficial services because of a reimbursement structure.”
Written by Robert Holly
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