Left ventricular assist devices (LVADs), surgically implanted medical pumps that take over most of the heart's circulatory duties, offer hope to patients experiencing end-stage heart failure. For those who are not medically suited for a heart transplant, implantation of a “destination” LVAD – meaning they will have the device for the rest of their lives – often becomes their only treatment option. A News Blog post from earlier this year details the amazing advances in medical technology that have allowed many patients with ailing hearts to continue to live productive lives with the aid of these small devices.
While this procedure can extend life and improve health for many, patients and their families will also be taking on a tremendous responsibility in managing their new device and coping with the lifestyle and psychological ramifications of life with a battery operated heart. Two recent multicenter studies by Penn Medicine researchers have explored some of the issues involved in helping patients understand how the device will impact end-of-life planning and what is needed from a destination LVAD patient’s caregiver.
In one study presented at the 2012 Heart Failure Society of America meeting, a team led by James Kirkpatrick, MD, assistant professor of Medicine, explored LVAD patients’ comprehension of how having the LVAD permanently will increase the likelihood of difficult end-of-life decisions. For example, some patients may eventually experience health issues not related to their cardiac condition, such as renal failure, dementia, or infection. So while their other organs may be failing, the device will continue to operate, resulting in the extremely difficult decision to discontinue device support and implement an advanced care plan. Similar concerns have arisen over pacemakers and implanted defibrillators. These decisions require both medical and ethical issues to be considered by the patient, their families, and their physicians.
"Patients get a lot of information about how to live with the new device, but unfortunately, our research indicates they absorb very little information on how to die with it," says Kirkpatrick.
Through one-on-one interviews, Kirkpatrick and his colleagues found that patients and caregivers were often overwhelmed by their illnesses and that because they were facing a life-or-death decision regarding whether to undergo the device implantation, they aren’t able to recall much of the information they received.
"What we need to do is talk about advanced-care issues before the device even goes in, realizing the person has just had a tremendous overload of information at a very vulnerable time," he said. "Then revisit it after the patient has been out living with their device for a while and can make a more informed decision about what they would want or not want."
In a separate study presented earlier this year at an American Heart Association Quality of Care and Outcomes meeting, Kirkpatrick's group presented other research focusing on how caregivers for patients who receive a destination LVAD are selected and prepared.
LVAD patients, caregivers, physicians, social workers and
coordinators were interviewed about what information and training, as well as
support, caregivers need in order to help a patient after their surgery. Providers emphasized that caregivers must be physically
able, emotionally stable and committed. But, they also acknowledged that
caregivers can become overwhelmed with the reality of the daily needs of the
patient, and the way in which their
relationships with those patients change.
Caregivers described concerns about the patient’s limited stamina and mobility. Several mentioned that they no longer have an intimate relationship with their spouse and described a profound sense of isolation. Caregivers described many home management tasks – which include everything from watching the patient’s diet and making sure they are taking their medications to helping the person bathe and monitoring the device’s settings, alarms and power sources – and for some, almost total physical care of the patient. Several contrasted the volume of information they received about what to expect with the sense that they were unprepared for the magnitude of the changes. Caregivers also said they were unprepared for discussions about advance directives.
“We found that while clinicians do extensive teaching about life with a destination LVAD, caregivers still express a sense of unpreparedness and highlight multiple areas of concern, including relationship issues with the patient, and with the device, isolation, and home and family management.”
Although there are no clear cut guidelines for addressing these issues, Kirkpatrick hopes that the findings from both studies will help open a dialogue between patients, families, and the medical community. In working toward these goals, Kirkpatrick and his colleagues at Penn convened a panel of experts to explore and discuss cardiovascular ethics and end-of-life challenges associated with LVADs.
“We need to let our patients know that we are here to help answer any of their questions and concerns about these lifesaving devices, no matter how sensitive the topic. We also want to help clinicians anticipate questions from patients about the kinds of emotional and lifestyle issues that these families will face.”