An estimated 2,500 heart failure patients have left ventricular assist devices (LVADs) implanted each year. In some cases, the burdens of the LVAD outweigh the benefits, so a decision is made to deactivate the device in the hospital setting.
“We see a lot of people with LVADs at our center, and I was curious if there was a difference in bereavement for people who died with an LVAD,” says Anne Kelemen, LICSW, APHSW-C, SEP, lead author of the study and palliative care social worker at MedStar Washington Hospital Center.
Kelemen and colleagues interviewed 11 family members of patients who died following LVAD deactivation.1 Participants talked about drawing strength from positive relationships with hospital staff.
“A lot of times, when people have LVADs, they have them for a number of years. Patients and families build more relationships with the care team than somebody who dies in the hospital maybe only after just a couple of weeks, who doesn’t have the longer-term relationships that the LVAD patient has,” says Kelemen.
Hope for survival was another theme that emerged. One family member reported that the patient hoped to live another 10 to 15 years. “Some families didn’t expect the patient was going to be dying that soon, and were not ready for the patient’s death,” says Kelemen.
It was unclear if additional information could have helped the families to prepare for this possibility. Despite knowing that the device was not going to cure the patient’s heart failure, the family might, nonetheless, have hoped that the patient would be among those who lived another 10 years or so. Additionally, the patient might have had discussions with healthcare providers that the family was not privy to, involving the prognosis and the possibility that LVAD would need to be deactivated in the near future. “This reflects what I’ve seen clinically, that when it comes to the end of life and the device needing to be deactivated, it sometimes comes as a surprise. And that brings stress not only to the patients and families, but also the staff,” says Kelemen.
Many family members said that lack of physical suffering and seeing that their loved one was comfortable was important to them. Several talked about their faith and spirituality and emphasized that they appreciated support from the hospital chaplain. One commented, “People came in and prayed with us, which, you know, was wonderful.”
Overall, the study findings call attention to the need for effective communication about LVADs not only at the end of life, but also at the point of decision-making and post-death.
“We recommend having those conversations not only initially, but throughout the LVAD experience,” says Kelemen.
Anthony Merlocco, MD, MSt, an ethicist and associate professor of pediatric cardiology and radiology at University of Tennessee Health Science Center, says that one primary ethical concern is to address the possibility of device withdrawal before the LVAD is implanted. “Ethics surrounding LVAD deactivation have been outlined for some time. But few patients and clinicians are acquainted with the academic discussion,” notes Merlocco. Some people do not see any distinction between LVAD deactivation and active euthanasia. “At the bedside, these arguments drive concerns that turning off the LVAD is an intentional act and morally equivalent to killing,” says Merlocco. Some clinicians report moral distress in such cases. Ethicists can help by educating clinicians on patient autonomy, including respecting the patient’s right to refuse treatment. “Support for caregivers and healthcare workers often starts with simply having an open discussion about their experiences and the psychological effects of having a loved one or a patient with an LVAD,” says Merlocco.
Although an ethics consult is not necessary every time an LVAD deactivation is considered, it is helpful in these situations, says Merlocco:
• if conflicts arise;
• if goals of care are unclear or uncommunicated;
• if there is moral distress regarding the permissibility of LVAD withdrawal.
“In such cases, an ethics consultation and palliative care involvement may be extremely helpful,” offers Merlocco.
With LVAD deactivation, conflicts arise when there is a misunderstanding or miscommunication between the patient, family, clinicians, and caretakers regarding the goals of care, and/or how those goals may be addressed. “People may have different perceptions of the benefit, burden, psychological experience, and quality of life associated with LVAD. Some patients may have altered risk perceptions,” says Merlocco. For example, some patients feel that with an LVAD, they are sicker or closer to death, when in fact the device is providing a needed medical support. Others may not be able to see beyond the immediate burdens of an LVAD. “When considering deactivation of an LVAD, perceptions often differ on how this fits into the goals of care — and what means are permissible to achieve those goals,” says Merlocco.
As a palliative medicine physician working at the Heart Hospital of the University of Louisville Health, Edward Dunn, MD, has been involved in the deactivation of an LVAD for many patients and their families. “This is a rather dramatic event,” says Dunn, an associate professor of palliative medicine at the University of Louisville School of medicine and medical director of palliative care and Ethics Committee chair at Jewish Hospital of Louisville.
In most cases, the patient will die in a matter of minutes to hours after deactivation. Clinicians prepare the patient by infusing anxiolytic and analgesic medication prior to deactivation, and verbally prepare the patient and family for what to expect. “However, no family member can be adequately prepared for the sudden death of an individual they have known for a lifetime. When family and friends are assembled around the bedside, they are witnessing the rapid death of their loved one,” says Dunn. Despite these challenges, not all LVAD deactivations call for an ethics consult. “If there is an ethical question in LVAD deactivation, there must be conflict,” explains Dunn. Here are some conflicts Dunn has seen involving an LVAD patient requesting deactivation:
• A conflict may arise between the patient and a spouse, adult children, siblings, or parents.
The patient often is unhappy given the limitations of life with an LVAD, which includes no bath, shower, or swimming. “Their lives are quite literally appended to a battery pack that provides the electrical energy that will drive the heart pump. They must always be thinking about battery life in everything they do,” says Dunn.
At some point, an LVAD patient may decide this quality of life is no longer acceptable. Often, progressive health problems (such as chronic kidney disease requiring dialysis, peripheral vascular disease resulting in limb amputations, a debilitating stroke, a carcinoma or lymphoma, or progressive lung disease) result in the body deteriorating despite the functioning LVAD preserving heart function. To a patient in this situation, life may no longer be worth living. “But to family members, that life must continue because they cannot accept the death of their loved one. Therein lies the conflict,” says Dunn.
Ultimately, deactivation is the patient’s decision (assuming that the patient has decisional capacity). Yet family members sometimes challenge this decision. “When we are confronted with such challenges from family members, an ethics consultation could be very helpful to bring stakeholders on both sides of the conflict to a resolution, if possible,” says Dunn.
• A patient may be conflicted about whether to deactivate.
A recent ethics consult involved a patient who had undergone LVAD implantation three years prior. However, the patient’s decline from chronic pulmonary fibrosis accelerated over a two-year period. The patient no longer could get out of bed without becoming extremely short of breath, which often triggered an acute panic attack. After several hospitalizations over a three-month period, he requested LVAD deactivation, claiming that his life was no longer of value to him. The patient’s siblings supported this decision. However, the patient became very ambivalent about the request, and vacillated on a daily basis.
“Our chaplain developed a relationship with him. Together, our team helped him resolve the matter within himself,” says Dunn. Ultimately, the patient finally agreed to deactivation. This occurred in the presence of his siblings, and the patient died within minutes after deactivation.
• There may be conflict between the patient and the heart failure team.
LVAD candidates are subjected to significant scrutiny in terms of overall medical condition prior to the device being implanted. The clinical team carefully assesses vital organs (such as lungs, kidneys, liver, and brain), the level of family and social support available, and the individual’s track record of consistent follow-up and reliability in cooperating with healthcare plans. “With the effort and expense of implanting an LVAD and providing the necessary complex care required thereafter, a heart failure team will not take lightly a patient’s request for deactivation,” observes Dunn.
In some cases, the heart failure team challenges such a request. “This can be a very delicate interaction between the patient, the family, and the heart failure team,” says Dunn. In this situation, an ethics consult can be very helpful. Ethicists listen to all the stakeholders on both sides of the conflict in an effort to achieve some type of resolution. An additional role for the ethics consultant is to support all the stakeholders involved. “These conversations can be emotionally charged and complex,” explains Dunn.
REFERENCE
- Kelemen A, Groninger H, Yearwood EL, et al. The experiences among bereaved family members after a left ventricular assist device (LVAD) deactivation. Heart Lung 2024;66:117-122.
An estimated 2,500 heart failure patients have left ventricular assist devices (LVADs) implanted each year. In some cases, the burdens of the LVAD outweigh the benefits, so a decision is made to deactivate the device in the hospital setting.
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