Illinois health officials have taken steps to improve communication between patients, doctors and hospice caregivers following a suburban woman’s experience witnessing her stepfather being repeatedly jolted by an active implanted defibrillator during his final hours in hospice.
Erika Barber of Arlington Heights said her stepfather, William Ruppel, had elected not to have resuscitation as he was dying from cancer in 2009. Yet when Barber saw her stepfather lift out of bed in pain several times in the hours before he died, she said she knew immediately that his implantable cardioverter defibrillator (ICD) had not been turned off when he was discharged to hospice.
“I could not believe that that was a step that got missed,” Barber said.
NBC 5 Investigates has learned similar jolting incidents have happened to hospice patients with ICDs, according to independent medical and hospice experts.
In the years following her stepfather’s death, Barber argued in support of references to ICDs and other implanted devices on Do Not Resuscitate and Practitioner Orders for Life-Sustaining Treatment (POLST) forms, which are signed by patients and express their ongoing needs and desires. The forms are also reviewed by medical providers during their patients’ end-of-life issues.
Barber shared her story with NBC 5 Investigates in March and later contacted the Illinois Department of Public Health. Several months later, state officials announced a revision to the 2017 POLST form that includes a reference to ICDs and other implanted devices as an added example of when the forms should be reviewed and updated.
“The Illinois Department of Public Health understands the circumstances surrounding the death of a loved one can be difficult and upsetting. In response to Ms. Barber’s request, IDPH was able to add information that also should be considered when periodically reviewing the POLST form,” said IDHP spokesperson Melaney Arnold.
However, the state added that it is important to recognize that no form can adequately substitute the careful consideration of all medical issues by the health care professionals involved.
The amendment is a good first step in sparking conversations between family members and healthcare professionals, according to Barber.
“Ideally, I would have liked an added section wherein an individual could indicate their wishes to discontinue an existing device in the event they experience a terminal condition and particularly when transferring to hospice,” Barber said. “Nonetheless, this amendment to the POLST does have the potential to further awareness and conversations related to implications of ICDs/implanted devices in long term and especially end of care life.”
The National Hospice and Palliative Care Organization told NBC 5 Investigates regular review and updates of the patient’s plan of care is an integral component of hospice care.
“NHPCO has long recommended that thoughtful discussions with patients and families entering hospice should include an explanation of the impact ICDs might have for those at life’s endd and the option of deactivating an ICD,” said NHPCO President and CEO Edo Banach.