Mechanical circulatory support (MCS) devices, including ventricular assist devices and total artificial hearts, are used to extend the window of time available for heart transplantation or improve the functional status and health-related quality of life for individuals with advanced heart failure1, 8. Despite the life-prolonging benefits of MCS therapy, the rate of complications is high with 89.2% of MCS patients reporting adverse events such as stroke, sepsis, gastrointestinal bleeds, and organ failure1, 3, 4, 5, 7.
The MCS disease trajectory is complex and potentially catastrophic creating difficult conditions for MCS patients and families9. In 2014, responding to MCS patients’ and families’ needs for palliative care, the Centers for Medicare and Medicaid Services issued a new national coverage determination that required all MCS programs to include palliative care specialists as part of the MCS teams8. Currently, practice guidelines for MCS support include palliative care consultation prior to MCS implantation, citing the benefits of advance care planning, symptom management, and end-of-life transitions8.
However, a literature review revealed a simplistic implementation of palliative care among individuals living with MCS. The palliative care described in the studies was one-dimensional, citing completion of advance directives via a single encounter with the palliative care specialist. Furthermore, the requirements of MCS advance care directive completion was met through the identification of a surrogate decision-maker. A crucial gap in the existing research is the lack of sustained communication about patient-centered values and preferences, particularly since catastrophic changes are likely in the disease trajectory.Additional gaps include the unexplored role of nurses in advance care planning and deficient palliative care resources for MCS patients8.
Purpose:
To explore the state of the science in palliative care for individuals with mechanical circulatory support.
Methods:
Databases CINAHL, PubMed, Web of Science, and Google Scholar were searched from December 2017 to November 2018. A systematic review was conducted of articles published in English with keywords: ‘palliative care’, ‘advance care planning’, ‘advance directive’, ‘mechanical circulatory support’, ‘ventricular assistive device’, and ‘total artificial heart.’ No date restrictions were applied. Articles unrelated to palliative care were excluded.
Results:
There were no published reviews on palliative care in the MCS population. Overall, the literature search yielded 38 peer-reviewed articles. Many publications (n = 28) recognized the need for palliative care, specifically advanced care planning. Ten articles focused on the completion of advance directives through the identification of surrogate decision-makers. The focus of some studies was aimed at creating advanced care planning tools (n = 5). There was no research on advance care planning for MCS-related readmissions to the hospital. Additionally, there was a dearth of information on palliative care resources in symptom management among MCS patients. These gaps in the literature present an aberration from the description of palliative care as patient- and family- centered “anticipating, preventing, and treating suffering”2. Also, although palliative care is historically rooted in nursing6, there is a paucity of information (n = 2) on nurse integrated palliative care for MCS patients. Despite the nursing presence in MCS care (i.e. in acute care, outpatient clinics, and hospice), the role of nurses in palliative care among MCS patients is underexplored.
Conclusions:
The review revealed the overall scarcity of palliative care resources for the MCS population. The growing population of MCS patients, with the associated complex disease trajectories and outcomes, implicates the urgent need for enhanced palliative care resources and improved symptom management. Identifying nurses’ role in palliative care could support the needs of MCS patients and promote improved health-related quality of life. Additionally, insight into the role of nurses will support the development and dissemination of education and palliative care training materials beneficial to MCS patients, families, and clinicians.
Implications:
Palliative care for MCS individuals is essential to reduce disease burden and improve health-related quality of life. Nurse researchers are uniquely positioned to enhance the discourse on patient- and family- centered palliative care for MCS patients. Research in this area will generate new knowledge to improve best care practices and patient outcomes in palliative care for the MCS population.
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