CAREGIVER PERSPECTIVES OF END OF LIFE CHALLENGES WITH LIFE SUSTAINING TECHNOLOGY
The aim of this presentation is to describe bereaved caregiver perceptions of end of life challenges faced when a loved one has a Left Ventricular Assist Device as destination therapy (LVAD-DT) and surveillance for safety becomes seeing their loved one be allowed to die.
Rationale:
The 2014 IOM report Dying in America : Improving quality of life and honoring individual preferences near the end of life 1identifies that ‘no one really knows whether, in the end, the death of a loved one occurred with the dignity that was hoped for, or to what degree the
dying experience was marred by pain, fear, and discomfort, emotional or physical.’ Patients who have received LVAD-DT, an increasingly mainstream treatment option for chronic heart failure, face the added burden of incomplete understanding of how death will occur, what to expect and the place of this technology. Caregivers play a vital role in ongoing surveillance for LVAD safety at home that subsequently morphs into understanding that death is near. While much attention is given to the implantation decision, very little is known about how to engage in end of life discussions and the place of this hope-filled life sustaining technology in death.
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Interview Guide: Tell me about the time your loved one died? Where did it take place, who was there? How did you know it was time? What was it like for you then? What would you do differently if you could? |
Methods:
As part of a study on decision making to receive LVAD-DT intervention2 we used an interpretive descriptive design to examine bearing witness to the death of a loved one. We conducted semi-structured interviews with a convenience sample of bereaved caregivers whose loved one opted for implantation yet subsequently died. Qualitative theme analysis was applied to the textual data about the experience of knowing when death was approaching, who provided assistance with the LVAD and where the death took place.
Results:
Bereaved caregivers (n=12) identified 1) Lack of preparation for death despite known issues; 2) Place of death influences caregiver role and confidence in care providers; 3) Lack of integration between LVAD team and hospice care; 4) Feeling abandoned by their ‘team’; 5) Death happened so fast.
Implications:
The findings augment understandings of palliative care and the anticipatory guidance needed for end of life planning in the context of potentially life sustaining technology. The study offers new perspectives on how to approach specialized palliative care and how to transition from a focus of LVAD surveillance for safety to an emphasis on ensuring a comfortable death. It also highlights the need for greater integration between LVAD teams and hospice care providers for caregiver support and education.