EXECUTIVE SUMMARY
Caregivers of patients with left ventricular assist devices (LVADs) face significant emotional, physical and financial burdens, according to a recent review. According to experts, some support approaches include the following:
- Provide caregivers with support before implantation of the device.
- Ensure that everyone involved has a realistic picture of life with a LVAD.
- Discuss and document a patient’s values and medical preferences in case of complications.
Caregivers of patients with left ventricular assist devices (LVADs) experience significant burdens, according to a recent review.1
“Caregivers of patients with LVADs can face huge challenges,” says Alana Sagin, MD, an instructor for the Palliative Care Service at Hospital of the University of Pennsylvania in Philadelphia.
These include financial burdens due to taking time off work, physical burdens of day-to-day care, and emotional burdens of helping their loved one through a big life change. “Re-hospitalizations are common after LVADs,” says Sagin. “LVADs can have great benefits for patients. But complications such as bleeding, infection, and stroke can also be devastating.”
Caregivers may be expected to help with medical decision-making if their loved one cannot make decisions for him- or herself. “These medical decisions can have a huge psychological and emotional toll on families,” says Sagin.
LVADs are becoming increasingly common in patients with end-stage heart failure. “The data are clear that these devices both improve quality and quantity of life for patients with advanced heart failure,” says Nathan Goldstein, MD, chief of the Division of Palliative Care at Mount Sinai Beth Israel in New York City. However, he acknowledges, both patients with LVADs and their caregivers face unique challenges related to the care and maintenance of the device.
“It has been suggested that patients and their caregivers may benefit from the interdisciplinary nature of palliative care consultation as a way to add an extra layer of supportive care,” says Goldstein.
The International Society for Heart and Lung Transplantation’s 2013 guidelines for mechanical circulatory support emphasize the importance of caregiver support for LVAD placement. The guidelines recommend that a lack of caregiver support should serve as a relative contraindication for device placement.2
“Quite a few studies suggest that caregivers really take a heavy physical and emotional toll in taking care of their loved one,” says Courtenay R. Bruce, JD, MA, assistant professor of medicine and medical ethics at Baylor College of Medicine’s Center for Medical Ethics & Health Policy. Bruce is director of Houston Methodist’s Bioethics Program.
It is unclear, says Bruce, how best to prepare caregivers for what to expect post-LVAD placement. “Some people think if we only did a better job explaining what to expect before the device is placed, then maybe caregivers wouldn’t experience these burdens. I disagree,” says Bruce.
One challenge is that an individual patient’s outcomes depend on multiple variables that are difficult for providers to anticipate. “Some people do well on the LVAD and some people don’t,” says Bruce. “To me, the real substantive ethical issues revolve around how and why caregivers contribute to positive or negative patient outcomes.”
It is not fully understood how caregiver support impacts patient mortality or morbidity, or what constitutes sufficient or insufficient caregiver support. “Should it matter that no caregiver lives geographically proximate to or with the patient?” asks Bruce. “No one knows.”
Supporting families and caregivers of patients with LVADs should start before implantation of the device, says Sagin. “It is important that everyone involved has a realistic picture of what life with a LVAD might look like, including complications that might occur,” she says. Discussing and documenting a patient’s values and medical preferences in case of complications is helpful. “This can alleviate some of the stress when family members need to make decisions for their loved ones,” says Sagin.
REFERENCES
- Magid M, Jones J, Allen LA, et al. The perceptions of important elements of caregiving for a left ventricular assist device patient: A qualitative meta-synthesis. J Cardiovasc Nurs 2015 Apr 15. [Epub ahead of print]
- Feldman D, Pamboukian SV, Teuteberg JJ, et al. The 2013 International Society for Heart and Lung Transplantation guidelines for mechanical circulatory support. J Heart Lung Transplant 2013; 32:157-187.
SOURCES
- Courtenay R. Bruce, JD, MA, Assistant Professor of Medicine & Medical Ethics, Center for Medical Ethics & Health Policy, Baylor College of Medicine/Director, Bioethics Program, Houston Methodist. Phone: (713) 798-4929. Fax: (713) 798-5678. Email: [email protected].
- Nathan Goldstein, MD, Chief, Division of Palliative Care, Mount Sinai Beth Israel, New York, NY. Phone: (212) 241-1446. Fax: (212) 860-9737. Email: [email protected].
- Alana Sagin, MD, Palliative Care Service, Hospital of the University of Pennsylvania, Philadelphia. Phone: (215) 460-7723. Email: [email protected].
Caregivers of patients with left ventricular assist devices face significant emotional, physical and financial burdens, according to a recent review.
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