Palliative Care Clinical Trial
Official title:
Dignity Talk: a Novel Palliative Care Intervention for Patients and Their Families
Dying patients and their families face many challenges near the end-of-life. Not only do
patients often experience physical distress, but they also have feelings of loss of dignity,
isolation, and uncertainty. Family members also face many challenges. They bear witness to
the suffering of loved ones, and they face uncertainty, loss, and at times a mounting sense
of helplessness.
The purpose of this study is to introduce and evaluate a new intervention called Dignity
Talk, meant to enhance end-of-life experience for both patients and their families. Dignity
Talk is based on a set of questions by which terminally ill patients and their family members
can engage in meaningful conversations with each other. It is intended to lessen feelings of
loss and helplessness and enhance feelings of connectedness by facilitating conversations
that tap into a sense of meaning and purpose, sharing of memories, wishes, hopes, and giving
guidance to those who will soon be left behind.
In Phase 1, 20 patients and family members will help finalize the method and Dignity Talk
question framework (is it easy to understand, do the investigators have the right questions,
and is the wording sensitive). In Phase 2 of the study the investigators will ask 100
patient-family pairs for feedback about Dignity Talk: what influence it had on their
palliative care experience, whether it works well, and whether this intervention should
become a regular part of palliative care. The investigators will also ask for feedback from
health-care providers in both phases. We are requesting approval for an amendment to the
healthcare provider feedback focus group questions. Will add those documents when they are
approved.
Four to six months after the death of their loved one, the investigators will contact the
family member to ask their thoughts about Dignity Talk, how it shaped their experience of
their grief and bereavement.
The investigators expect that the study will show that Dignity Talk can be an effective,
highly accessible palliative care intervention, which will enhance the end-of-life experience
for palliative patients and the families who support them.
See above summary ;
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