C-TAC convened a meeting on June 1, 2011, to review what is known—and not yet known—about what consumers think and do prior to their “unexpected, inevitable” health events and how they make in-the-moment decisions about advanced illness care. Click here to read our Consumer Research Brief.
Gaps in Our Understanding
Much consumer research is designed to look at a particular issue, such as advanced planning, advanced directives, palliative care, end-of-life care, the culture of death in America or hospice. But research that begins with the consumer’s own frame of reference is more likely to provide unbiased responses about his/her values, attitudes and decision-making, based on his/her life experience.
Some groups are in fact conducting studies that are more consumer-oriented. The methodology of the SCAN Foundation, the Center to Advance Palliative Care, AARP Services Inc. and the National Journal are designed so that the consumer provides the starting point. Their studies use an array of research techniques (qualitative, ethnographic, survey) to understand the events, questions and decision making that occur in relation to advanced illness care.
From such research, it appears that more information is needed on:
• the decision-making process that patients, their families, caregivers and medical teams undertake;
• how the public thinks about the costs of care, in regard to both the health care system and to their personal finances; and
• the effectiveness of communication between patients and clinicians and how to improve it.
C-TAC will revise and update this brief as more research is done, and we welcome comments about this paper as well as findings from new and existing research. Please contact: firstname.lastname@example.org
Click on the following link to read the brief.
Selected Literature Review – April 18, 2011
We have been reviewing and selecting representative literature to update and keep abreast of current trends and research in a number of topic areas including: Advance Care Planning, the POLST (Physician Orders for Life-Sustaining Treatment) Paradigm, Hospice, Long-term care, Non-Hospice Palliative Care, End-of-Life Care, Race & Cultural Issues, and Popular Recent Media.
Select findings include:
- Wider adoption of palliative care teams and hospice care in hospitals.
- Reform of financing of care has been stimulated by studies establishing that palliative care increases survival, including the provision of concurrent hospice care for children in the Patient Protection and Affordable Care Act (PPACA).
- There are pockets of progress, in nursing homes and community efforts to increase understanding of decision-making.
- Studies show that having the conversations improves physical and psychosocial symptoms; family caregiver well-being; and patient, family and physician satisfaction.
The literature demonstrates a continuing interest in the needs of people with advanced illness and that a public discussion is essential to develop a better understanding of how best to meet those needs.
For more details and references see our C-TAC Selected Literature Review.