Journal of Palliative Care Spring 2008 vol. 24 no. 1

Link to journal issue
Development of a palliative care education program in rural long-term care facilities.
p. 60; author reply 60-1
Denholm-Margaret-J.
Comment, Letter.
Comment on: J Palliat Care. 2007 Autumn; 23(3):154-62.

Advanced chronic obstructive pulmonary disease: impact on informal caregivers.
p. 49-54, 59 refs
Simpson-A-Catherine, Rocker-Graeme-M.
Abstract
Patients with advanced COPD experience significant functional decline and often incapacitating dyspnea towards the terminal stages. Their families may also experience a parallel decline in psychological and physical functioning, and informal caregivers are often the invisible victims of this progressive and incurable disease. As we move toward new and more comprehensive models of care for patients, these models should embrace the needs of those who witness and suffer from the relentless struggle of patients to cope with worsening dyspnea, and the broad range of associated fears and anxieties that are so prevalent in the advanced stages of COPD.

Pediatric palliative care online: the views of health care professionals.
p. 41-8, 41 refs
Ens-Carla-D-L, Chochinov-Harvey-M, Berard-Josette-L-M, Harlos-Mike-S, Stenekes-Simone-J, Wowchuk-Suzanne-M.
Abstract
The purpose of the study was to evaluate the role of an online resource for dying children, their family members, and health care providers from the perspective of pediatric palliative care experts. Semistructured interviews with 12 leaders in pediatric palliative care in North America were conducted, exploring their perceptions and attitudes towards various aspects of Web-based resources for dying children and their care providers. Informants felt that an online resource may allow for a different form of expression, a connection between people undergoing a rare event, and an increase in education and support. Major challenges, such as accessibility, monitoring, and remaining current, would be ongoing. Other key themes included access, information, and anonymity. The data suggest that developing Web-based resources for dying young patients and their families may have merit. Should this take place, a feasibility study will be necessary to further determine the value of such a Web site for these vulnerable populations.

Improving end-of-life care through community-based grassroots collaboration: development of the Chinese-American Coalition for Compassionate Care.
p. 31-40
Chou-Wen-Ying-Sylvia, Stokes-Sandy-Chen, Citko-Judy, Davies-Betty.
Abstract
As a volunteer-formed, community-based organization devoted to improving the quality of end-of-life care for Chinese Americans, the new Chinese-American Coalition for Compassionate Care (CACCC) is a unique and promising venture. This article has several aims: 1) to describe the history and development of the recently founded CACCC; 2) to introduce and critically evaluate one of CACCC's first public programs, a volunteer and caregiver training on end-of-life care, which prompted subsequent programs and activities; 3) to report on CACCC's current projects and short- and long-term goals; and 4) to discuss the implications for other similar community-based organizations devoted to the health and quality of life of a targeted population.

Pediatric palliative care: a qualitative study of physicians' perspectives in a tertiary care university hospital.
p. 26-30
St-Laurent-Gagnon-Therese, Carnevale-Franco-A, Duval-Michel.
Abstract
The objective of this study was to assess the concept of palliative care for a group of physicians in a tertiary care pediatric university hospital. Grounded theory methodology was used. Data included 12 semistructured interviews, field notes, research consent forms, research protocols, and articles published by the participants. Physicians involved in both research and clinical care of severely ill children were interviewed. Data analysis identified three principal themes. First, physicians limited their concept of palliative care to the relief of physical symptoms, equating palliative care with comfort care. Second, there was variation regarding the appropriate moment to introduce palliative care for children. Finally, many physicians were not comfortable using the term palliative care. Although this study was conducted in one Canadian centre, the results raise questions that should be examined in other settings. A vague concept of palliative care may delay the provision of palliative care to children.

Lived experiences of Canadian women with metastatic breast cancer in preparation for their death: a qualitative study. Part II--enabling and inhibiting factors; the paradox of death preparation.
p. 16-25
Chunlestskul-Kanoknuch, Carlson-Linda-E, Koopmans-Janice-P, Angen- Maureen.
Abstract
OBJECTIVES: This study examined the essence of lived experiences of a sample of women with metastatic breast cancer in preparing themselves for their own death, with the goal of informing health provider interventions that support an acceptance of and preparation for death. METHODS: A phenomenological qualitative approach was used. Five women with metastatic breast cancer were interviewed on two occasions. Themes were analyzed, described, and validated, until saturation was met. Qualitative outcomes of the thematic analysis related to the enabling and inhibiting factors involved in preparing for one's own death. RESULTS: Factors that enabled and inhibited death preparation tasks in these women included: personal past death experiences; the availability of time and a place to think, learn, and work on death preparation activities; a chance to connect with others in similar situations; and personal and cultural attitudes towards death. Gaps and unmet needs within the health care system were identified. Finally, the paradoxical nature of various aspects of death preparation was highlighted. CONCLUSIONS: Death preparation can be accomplished through enhancing supportive care from health care professionals, with beneficial outcomes for patients and families. Nurses should be conscious of the paradoxical nature of death preparation, and help women to confront and manage these.

Lived experiences of Canadian women with metastatic breast cancer in preparation for their death: a qualitative study. Part I-- preparations and consequences.
p. 5-15
Chunlestskul-Kanoknuch, Carlson-Linda-E, Koopmans-Janice-P, Angen- Maureen.
Abstract
OBJECTIVES: This study aimed to detail the tasks of death preparation and the consequences of such preparation for women with metastatic breast cancer. METHODS: A phenomenological qualitative approach was used. Five women with metastatic breast cancer were interviewed on two occasions. Themes were analyzed, described, and validated, until saturation was met. Outcomes of thematic analysis related to the impetus, process, and consequences of preparing for one's own death. FINDINGS: The women prepared for their death by: acknowledging their grief; preparing mentally; seeking information and support; preparing the family; and preparing for the end of life. They also engaged in creating life projects that enhanced their connections with loved ones, and lived full and joyful lives. These activities helped increased their readiness to die in peace. CONCLUSIONS: Preparing for their own death can help women with incurable cancer live full, satisfying lives, and be prepared to face their own death with peace. Helping women express their feelings around their own death and their preparation for death should be a key interdisciplinary psychosocial nursing intervention.

Listen to the voices of poverty!
p. 3-4
Roy-David-J.
Editorial.