Left ventricular assist devices (LVADs), surgicallyimplanted medical pumps that take over most of the heart's circulatory duties,offer hope to patients experiencing end-stage heart failure. For those who arenot medically suited for a heart transplant, implantation of a “destination”LVAD – meaning they will have the device for the rest of their lives – oftenbecomes their only treatment option. A News Blog post from earlier this yeardetails the amazing advances in medical technology that have allowed manypatients with ailing hearts to continue to live productive lives with the aidof these small devices.
While this procedure can extend life and improve health formany, patients and their families will also be taking on a tremendous responsibilityin managing their new device and coping with the lifestyle and psychologicalramifications of life with a battery operated heart. Two recentmulticenter studies by Penn Medicine researchers have explored some of the issuesinvolved in helping patients understand how the device will impact end-of-lifeplanning and what is needed from a destinationLVAD patient’s caregiver.
In one study presented at the 2012 Heart Failure Society ofAmerica meeting, a team led by James Kirkpatrick, MD, assistant professor ofMedicine, explored LVAD patients’ comprehension of how having the LVAD permanently willincrease the likelihood of difficult end-of-life decisions. For example,some patients may eventually experience health issues not related to their cardiaccondition, such as renal failure, dementia, or infection. So while their otherorgans may be failing, the device will continue to operate, resulting in theextremely difficult decision to discontinue device support and implement anadvanced care plan. Similar concerns have arisen over pacemakers and implanteddefibrillators. These decisions require both medical and ethical issues to beconsidered by the patient, their families, and their physicians.
"Patients get a lot of information about how to livewith the new device, but unfortunately, our research indicates they absorb verylittle information on how to die with it," says Kirkpatrick.
Through one-on-one interviews, Kirkpatrick and hiscolleagues found that patients and caregivers were often overwhelmed by theirillnesses and that because they were facing a life-or-death decision regardingwhether to undergo the device implantation, they aren’t able to recall much ofthe information they received.
"What we need to do is talk about advanced-care issuesbefore the device even goes in, realizing the person has just had a tremendousoverload of information at a very vulnerable time," he said. "Thenrevisit it after the patient has been out living with their device for a whileand can make a more informed decision about what they would want or notwant."
In a separate studypresented earlier this year at an American Heart Association Quality of Careand Outcomes meeting, Kirkpatrick's group presented other research focusing onhow caregivers for patients who receive a destination LVAD are selected andprepared.
LVAD patients, caregivers, physicians, social workers andcoordinators were interviewed about what information and training, as well assupport, caregivers need in order to help a patient after their surgery. Providers emphasized that caregivers must be physicallyable, emotionally stable and committed. But, they also acknowledged thatcaregivers can become overwhelmed with the reality of the daily needs of thepatient, and the way in which theirrelationships with those patients change.
Caregiversdescribed concerns about the patient’s limited stamina and mobility. Severalmentioned that they no longer have an intimate relationship with their spouseand described a profound sense of isolation. Caregivers described many homemanagement tasks – which include everything from watching the patient’s dietand making sure they are taking their medications to helping the person batheand monitoring the device’s settings, alarms and power sources – and for some, almost total physical care of thepatient. Several contrasted the volume of information they received about whatto expect with the sense that they were unprepared for the magnitude of thechanges. Caregivers also said they were unprepared for discussions aboutadvance directives.
“We found that while clinicians do extensive teaching aboutlife with a destination LVAD, caregivers still express a sense ofunpreparedness and highlight multiple areas of concern, including relationshipissues with the patient, and with the device, isolation, and home and family management.”
Although there are no clear cut guidelines for addressingthese issues, Kirkpatrick hopes that the findings from both studies will helpopen a dialogue between patients, families, and the medical community. In working toward these goals, Kirkpatrick andhis colleagues at Penn convened a panel of experts to explore and discusscardiovascular ethics and end-of-life challenges associated with LVADs.
“We need to let our patients know that we are here to helpanswer any of their questions and concerns about these lifesaving devices, nomatter how sensitive the topic. We also want to help cliniciansanticipate questions from patients about the kinds of emotional and lifestyleissues that these families will face.”