Background: This study reports the process evaluation of the In-Dialogue conversation aid to facilitate shared decision-making with people with intellectual disabilities in the palliative phase. Methods: Training for In-Dialogue was evaluated by 53 support staff members through questionnaires. The use of In-Dialogue in four residential care…

Background: Recently, more and more people with intellectual disabilities have been dying from life-limiting conditions, and on many occasions, people with intellectual disabilities have not been informed of this. There is limited evidence concerning the views and opinions of this cohort regarding the information that is needed in order for…

This study elicited the experiences of nurses caring for children with life-limiting conditions and their family, within a community based intellectual disability service. A qualitative descriptive research approach was adopted where purposeful sampling recruited 10 participants. Data was collected using one to one semi-structured interviews and…

Background: Research on staffed housing for people with intellectual disability has identified the challenges in achieving positive quality of life outcomes. However, a less well considered dimension of such services is that they are places of living and dying. This paper looks at the experiences of staff in dealing with issues of death and dying.…

Background: The aim of this study was to investigate the process of end-of-life decision-making regarding people with intellectual disabilities (ID) in the Netherlands, from the perspective of physicians. Methods: This qualitative study involved nine semi-structured interviews with ID physicians in the Netherlands after the deaths of patients with…

Background: While end-of-life decisions in the general population have received attention in several countries, not much is known about this in people with intellectual disabilities (IDs). Therefore, the prevalence and nature of end-of-life decisions were investigated in a Dutch centre providing residential care for 335 people with IDs. Method: A…

The present study examined the degree to which residential characteristics and social factors are associated with mortality, after controlling for personal characteristics, among adults with intellectual disabilities who have resided in nursing homes (facilities providing skilled care and related services) at baseline in the Chicago area. Initial…

Dying and death have become more and more complicated for everyone. Technology and the patient autonomy movement have come together to create a host of possible end of life treatment dilemmas. The introduction of advance directives in medical decision-making has raised further issues about projecting treatment wishes into future, unknowable…

When patients pursue a hastened death, how is the labor of family caregiving affected? The authors examined this question in a qualitative study of 35 families. Four cases reveal the main themes: "taking care" included mutual protection between patients and family members; "midwifing the death" without professional support left families unprepared…

Purpose: To better understand the experiences and potential unmet need of persons who die in long-term care. Design and Methods: We conducted after-death interviews with staff who had cared for 422 decedents with dementia and 159 who were cognitively intact and received terminal care in U.S. nursing homes (NHs) or residential care-assisted living…

Purpose: We designed this study to examine the end-of-life (EOL) experience in long-term care (LTC) based on input from key stakeholders. Design and Methods: The study consisted of 10 homogeneous focus groups drawn from a purposive sample of LTC residents (2 groups; total n = 11), family caregivers (2 groups; total n = 19), paraprofessional staff…

Describes an extension program to educate adults about the many facets of funeral services. Symposia topics include funeral facts, helping children understand death, and business matters after death. (SK)

States the general assumptions and principles underlying standards for terminal care for those who have initiated or are planning programs for the terminally ill. These are urgently needed in view of the rapid development of the hospice movement. Patient-oriented, family-oriented, and staff-oriented standards are also enumerated. (BEF)

Chaplains and seminary students enrolled in the University of Virginia Medical Center's Clinical Pastoral Program were asked to judge physicians' performances while requesting autopsies by completing a confidential evaluation form. The results of the evaluations were correlated with the physicians' success in obtaining autopsies. (MLW)

It is suggested in this literature review on the psychosomatic aspects of cancer that psychoanalytic interpretations which focused on intrapsychic elements have given way to considerations of rehabilitation and assistance with the complex emotional reactions of patients and their families to terminal illness and death. (Author/DB)