JPlesa posted on April 01, 2010 10:21
Cape hospices start defibrillator conversation with patients, families at intake
April 01, 2010 9:53 AM
Hospices on Cape Cod are bucking a national trend that says many home-care programs for terminally ill patients do not address the issue of implanted defibrillators.
A study published last month in the Annals of Internal Medicine found that a large percentage of hospices nationwide do not have policies or procedures for dealing with patients who have defibrillator implants. This can lead to continued shocking of dying patients, a situation that can be extremely uncomfortable for those patients and not contribute to the quality of their dying days, the study said.
Some of the hospices on Cape Cod have specific policies outlining procedures for dealing with patients who have implanted devices. Others do not. But all those contacted by the Cape Cod Times said asking about implanted devices and encouraging patients and families to discuss the issue is part of their intake procedure. The number of cases involving decisions about implanted defibrillators has been few and far between, according to representatives of hospices on Cape Cod. However, with the aging baby boomer population and the increase in people having the devices implanted, hospices could see more patients for whom this is an issue.
Defibrillator implants are battery-operated devices that continuously monitor a patient's heart rate and administer a shock when the heart beat becomes irregular. Unlike pacemakers, the shock delivered by an implanted defibrillator can be painful, according to some. The device can be turned off by a physician, technician or even a manufacturer's representative. However, the question patients and families must grapple with before that happens is: Does it make sense to keep a lifesaving device turned on when the patient has a terminal illness or condition?
That is the kind of question a patient and family must decide after due consideration, says Marsha McCarthy, program administrator at Broad Reach Hospice in Chatham, a small hospice with an average daily census of about 40 patients.
While this agency does not have a specific policy on defibrillator implants, the issue is covered by the agency's “intensive” intake procedure, McCarthy says. That questionnaire covers a host of issues about a patient's wishes for end-of-life procedures, including what to do about implanted defibrillators, McCarthy says.
Similarly, Beacon Hospice in South Yarmouth does not have specific policy, but it is a practice of the agency to identify patients with defibrillators and to help the family decide how to handle the issue, according to a spokeswoman for the agency.
The question of whether it makes sense to keep a defibrillator turned on “is a personal issue and one that needs to be addressed by the patient and family,” says Melissa Weidman of Hospice & Palliative Care of Cape Cod.
Her agency has a four-page policy that defines and outlines procedures for deactivating defibrillator implants.
According to Susan Strauss, vice president of clinical operations for the hospice, “We designed the policy as we started seeing an increase in the number of patients with pacemakers and implanted defibrillators.”
When the issue first began arising, hospice staff would see patients and families become caught in a Catch-22 of caregivers.
“Patients and family would ask, ‘Can we turn them off,' and we would say, ‘Yes,' and refer them to their primary care physician or cardiologist, who would refer them to the doctor who implanted the device. Now understand, often these devices are implanted by doctors who never see the patient again. Sometimes they would refer them back to the primary care physician and the whole round robin would begin again.” Strauss says.
“People in hospice have many issues to deal with. The frustration of being referred from doctor to doctor should not be one of them,” she says.
Strauss recalls one instance in which a patient wished to have the defibrillator turned off, but the family did not. Many discussions were held and the patient died before the issue was resolved within the family.
Not all physicians or hospice workers are comfortable with the idea of shutting off a defibrillator, but it is the role of hospice to be “an advocate for the patient,” Strauss says. Her agency has an ethics committee made up of clinical staff, clergy, home health workers and laypeople who will help staff and hospice patients deal with the issue of whether or not to shut down an implant.
Dr. Hendrick Ecker, an emergency room physician at Cape Cod Hospital, says the issue is likely to move to the forefront as an increasing number of people get the implants. Asking about implanted devices is part of the routine when a patient comes into the hospital. But asking that question and asking a patient or family whether the device should be disengaged are two different issues, he says.
Uncomfortable as it might be, at the time a device is implanted, doctors should tell patients and families there could be a time when they must decide whether to deprogram the device if another underlying issue takes precedence, he says. And this includes terminal illnesses.
“That discussion can cause discomfort. Nonetheless, the issue needs to be raised. Patients and families need to be informed,” Ecker says.
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