Patients approaching the end of life not only face challenges to physical well-being but also threats to emotional and spiritual integrity. Yet, identifying appropriate, effective, and brief interventions to address those concerns has proven elusive. We developed an intervention based on life review and emotional disclosure literatures and conducted a pilot study to determine feasibility and acceptability. This article presents qualitative intervention responses.

We conducted a three-armed randomized control trial to evaluate the effects of preparation and life completion discussion on health outcomes in patients with advanced serious illness. Hospice-eligible subjects were randomly assigned to one of three groups: (1) intervention (life completion discussion intervention), (2) attention control (relaxation meditation), and control (no intervention). Subjects in the intervention arm met with a facilitator three times. Session 1 focused on life story, Session 2 on forgiveness, and Session 3, on heritage and legacy.

Eighteen subjects participated in the pilot intervention interviews. Subjects from a range of socioeconomic backgrounds completed the intervention with equal facility. Results from Session 1 demonstrate narrative responses participants gave as they reconnected with previous life roles, values, and accomplishments. The second session illustrated reflections of choices one might have made differently and exploration of forgiveness offered and sought. Content from the first and second sessions laid the foundation for discussing Session 3's lessons learned and heritage and legacy. Responses are summarized to assist clinicians in anticipating life review content that may improve overall quality of life at the end of life.

Discussions of life completion may improve important health outcomes for patients at the end of life. This intervention may provide a brief, standardized, and transportable means for improving the quality of life of patients with advanced serious illness.

Disparities in breast cancer survival and treatment for African American and low income women are well documented, yet poorly understood. As care for women with metastatic breast cancer (MBC) evolves to a chronic care model, any inequities in optimal treatment and management of symptoms must also be identified and eliminated. The purpose of this study was to explore how race and income status influence women's experiences with MBC, particularly the management of symptoms, by describing the perceived challenges and barriers to achieving optimal symptom management among women with MBC and exploring whether the perceived challenges and barriers differed according to race or income.

Quantitative techniques were used to assess demographics, clinical characteristics, symptom distress, and quality of life and to classify women into groups according to race and income. Qualitative techniques were used to explore the perceived challenges, barriers, and potential influences of race and income on management of symptoms in a prospective sample of 48 women with MBC.

Commonalities of themes across all groups were faith, hope, and progressive loss. Low-income African American women uniquely experienced greater physical and social distress and more uncertainty about treatment and treatment goals than the other delineated racial and economic groups.

There are many commonalities to the challenges of illness presented to women with MBC. There are also interesting, emerging thematic racial and economic differences, most compelling among the low income African American women with resultant practice and research implications.

The combination of a difficult early diagnosis, few treatment options, and high mortality rate could make the experience of pancreatic cancer different from the experience of other cancers, both for patients and families. To design effective interventions for families with a diagnosis of pancreatic cancer, there is need for a model of family members' adjustment to cancer that is specific to these unique aspects of pancreatic cancer.

Trained clinical interviewers and a genetic counselor conducted phone interviews with 22 first-degree relatives—parents, siblings, and offspring—from a pool of participating family members. The interview transcripts were analyzed using qualitative coding methods.

Participants expressed both similar and different themes compared with other literature on adjustment to cancer. Relatives struggled through both the initial diagnosis and its aftermath, seeking to balance their own strong feelings with the needs of the ailing family member. Support systems were identified as very important, regardless of the source of the support, and those without them reported more intense difficulties. Many family members felt that everything was happening too fast to slow down and process what was going on.

Pancreatic cancer families may be unable to cope by taking one day at a time and must find other ways of dealing with stress. Also, the compressed timeline between diagnosis and death may heighten certain coping behaviors, such as the reevaluation of one's priorities.

Health care professionals report a lack of skills in the psychosocial and spiritual aspects of caring for dying people and high levels of moral distress, grief, and burnout. To address these concerns, the “Being with Dying: Professional Training Program in Contemplative End-of-Life Care” (BWD) was created. The premise of BWD, which is based on the development of mindfulness and receptive attention through contemplative practice, is that cultivating stability of mind and emotions enables clinicians to respond to others and themselves with compassion. This article describes the impact of BWD on the participants.

Ninety-five BWD participants completed an anonymous online survey; 40 completed a confidential open-ended telephone interview.

Four main themes—the power of presence, cultivating balanced compassion, recognizing grief, and the importance of self-care—emerged in the interviews and were supported in the survey data. The interviewees considered BWD's contemplative and reflective practices meaningful, useful, and valuable and reported that BWD provided skills, attitudes, behaviors, and tools to change how they worked with the dying and bereaved.

The quality of presence has the potential to transform the care of dying people and the caregivers themselves. Cultivating this quality within themselves and others allows clinicians to explore alternatives to exclusively intellectual, procedural, and task-oriented approaches when caring for dying people. BWD provides a rare opportunity to engage in practices and methods that cultivate the stability of mind and emotions that may facilitate compassionate care of dying patients, families, and caregivers.

Little is known about the factors that mediate the caregiving experience of informal carers at home, which could inform about ways of supporting them in their caregiving role. Our objective was to investigate the caring experience of carers for patients with an advanced progressive illness (chronic obstructive pulmonary disease [COPD], heart failure, cancer, or motor neuron diseases [MND]), who suffer from breathlessness.

A purposive sample of 15 carers was selected. They were recruited via the patients they cared for (who suffered from COPD, cancer, MND, or heart failure) from the hospital and the community. Data were collected through semistructured, in-depth interviews. All were tape-recorded and transcribed verbatim. The analysis used a Grounded Theory approach and NVivo software facilitated the management and analysis of the data.

Several key issues affected caring in a positive or a negative way. The threats to caring were uncertainty, carers' own health problems, an imploded world, negative reactions from outside, person loss, and acute exacerbations. Resources that carers drew on were acceptance, self-care, availability of support, feeling that caring is a shared responsibility with the patient, and “getting on with” caring in case of emergencies. Breathlessness was particularly challenging, and carers did not have any strategies to relieve the symptom. They were ill prepared for acute exacerbations.

Carers need to be included in opportunities for support provision in advanced illness. Negotiated involvement of a health professional could buffer the heavy responsibilities related to home care. They could provide problem-solving skills and build on the resources that carers draw on in response to what they experience as most threatening to their caring role.

As medical technology has improved, there has been a marked increase in the numbers of children with life-limiting conditions being managed in the community. Few studies have evaluated the life worlds of the parents of these children. However, there have been studies that have reported feelings of isolation and depression among mothers. This article reports a study that highlights the mental health implications of the lived experience of parenting a child with a life-limiting condition.

Semistructured interviews were conducted with 10 parents of children with life-limiting conditions and analyzed using a phenomenological method.

The essential meaning of the phenomenon “the lived experience of parenting a child with a life limiting condition” is understood as a full-time emotional struggle involving six continuous constituents: inner drive, feeling responsible, psychological effects, threatened self image, social withdrawal, and a fear of reaching the bottom line.

Very little clinical attention is focused upon the wider issues that affect parents dealing with caring for a child with a life-limiting condition.

Self-reported health-related quality of life (HRQoL) is an important predictor of survival alongside clinical variables and physicians' prediction. This study assessed whether better prediction is achieved using generic (SF-36) HRQoL measures or cancer-specific (EORTC QLQ-C30) measures that include symptoms.

Fifty-four lung and 46 colorectal patients comprised the sample. Ninety-four died before study conclusion. EORTC QLQ-C30 and SF-36 scores and demographic and clinical information were collected at baseline. Follow-up was 5 years. Deaths were flagged by the Office of National Statistics. Cox regression survival analyses were conducted. Surviving cases were censored in the analysis.

Univariate analyses showed that survival was significantly associated with better EORTC QLQ-C30 physical functioning, role functioning, and global health and less dyspnea and appetite loss. For the SF-36, survival was significantly associated with better emotional role functioning, general health, energy/vitality, and social functioning. The SF-36 summary score for mental health was significantly related to better survival, whereas the SF-36 summary score for physical health was not. In the multivariate analysis, only the SF-36 mental health summary score remained an independent, significant predictor, mainly due to considerable intercorrelations between HRQoL scales. However, models combining the SF-36 mental health summary score with diagnosis explained a similar amount of variance (12%–13%) as models combining diagnosis with single scale SF-36 Energy/Vitality or EORTC QLQ-C30 Appetite Loss.

HRQoL contributes significantly to prediction of survival. Generic measures are at least as useful as disease-specific measures including symptoms. Intercorrelations between HRQoL variables and between HRQoL and clinical variables makes it difficult to identify prime predictors. We need to identify variables that are as independent of each other as possible to maximize predictive power and produce more consistent results.

Family therapy has developed several approaches to framing questions within family meetings, but few of these techniques have been adapted for palliative care. We focus on the application of questioning techniques from systemic family therapy to palliative care. More specifically, we describe and give examples of the model of asking questions developed by Karl Tomm (1988) through its application in Family Focused Grief Therapy (FFGT), a preventive intervention delivered to high-risk families during palliative care and bereavement.

First, the type of questions used across the course of therapy is explored based on the interventive questioning model. Then, a case example is provided to demonstrate the use and adaptation of this model in a palliative care setting.

At the beginning of therapy, the most frequent questions were linear and circular, moving around the family to build up a picture of events from everyone's perspective. As for the frequency of reflexive and strategic questions, these increased as the therapy progressed, bringing the family to new perspectives. The case example fleshes out the importance of each type of question, all of which have a proper place in the course of therapy.

These illustrations highlight the value of having a model of questioning styles to guide the clinician when exploring palliative care issues, such as care provision, coping and grief, intimacy, and discussing death. This framework could be useful in guiding supervisors, trainees, and clinicians seeking to build skills and optimize their interventions in a palliative care setting.

Tending to the spiritual needs of patients has begun to be formally recognized by professional spiritual care providers, health care councils, and health delivery systems over the last 30 years. Recognition of these programs has coincided with evidence-based research on the effect of spirituality on health. Palliative care has served as a forerunner to an integrated professional spiritual care approach, recognizing the importance of addressing the spiritual needs of the dying from its inauguration within Western medicine almost 50 years ago. Oncology programs have also begun to recognize the importance of spirituality to patients along the cancer continuum, especially those who are approaching the end of life. Although standards and best practice guidelines have been established and incorporated into practice, little is known about the actual factors affecting the practice of spiritual care programs or professional chaplains working within an oncology setting.

Participant observation and interactive interviews occurred at five cancer programs after we conducted a literature search.

This study identified underlying organizational challenges, cultural and professional issues, academic program development challenges, administrative duties, and therapeutic interventions that determined the success of oncology spiritual care programs in practice.

Although spiritual care services have developed as a profession and become recognized as a service within oncology and palliative care, organizational and operational issues were underrecognized yet significant factors in the success of oncology spiritual care programs. Spiritual care programs that were centrally located within the cancer care center, reported and provided guidance to senior leaders, reflected a multifaith approach, and had an academic role were better resourced, utilized more frequently, and seen to be integral members of an interdisciplinary care team than those services who did not reflect these characteristics.

Adolescence is characterized by increasing liberation from parents as the young person evolves into an independent individual. Experiencing the serious illness and death of a parent during this phase implies great stress. Serious illness involves uncertainty, worry, and hope at the same time that it is necessary for everyday life to function. This study sought to describe adolescents' experiences in the serious illness and death of a parent.

The study was carried out using a qualitative method. Data were collected in interviews with five adolescents who were 14–17 years of age when one of their parents died.

The results show that the parent's illness was a strong threat, as the adolescents understood that their own and the family's lives would be greatly changed by the illness/death. The incomprehensibility of the parent's serious illness and death was a threatening condition on its own. The adolescents strived to make the inconceivable more conceivable to understand what was happening. They also described the necessity of finding different ways of relating to and managing the threat, such as restoring order, seeking closeness, adapting, gaining control, avoiding talking about the illness, not accepting and counting the parent out. The adolescents described feelings of being alone and alienated, even though they were close to family and friends and they did not actively seek support. The lives of the adolescents were changed by their experiences, beyond their bereavement over the parent. They felt that they had become more mature than their friends and that there had been a change in their thinking about life, changes in values, and changes in their views of relationships with other people.

The results of the present study can form a basis for developing a support program whose purpose would be to prevent effects on health.

To develop a communication skills training module for health care professionals about how to conduct a family meeting in palliative care and to evaluate the module in terms of participant self-efficacy and satisfaction.

Forty multispecialty health care professionals from the New York metropolitan area attended a communication skills training module at a Comprehensive Cancer Center about how to conduct a family meeting in oncology. The modular content was based on the Comskil model and current literature in the field.

Based on a retrospective pre–post measure, participants reported a significant increase in self-efficacy about their ability to conduct a family meeting. Furthermore, at least 93% of participants expressed their satisfaction with various aspects of the module by agreeing or strongly agreeing with statements on the course evaluation form.

Family meetings play a significant role in the palliative care setting, where family support for planning and continuing care is vital to optimize patient care. Although these meetings can be challenging, this communication skills module is effective in increasing the confidence of participants in conducting a family meeting.

To improve the palliative care and more effectively meet the needs of young patients and their families at the end of life, the authors investigated the place of death of adolescents and young adults treated in their institution and identified some of the factors influencing the choice of place of death.

The parents and/or partners of adolescents and young adults (15 to 25 years old) who died at Institut Curie (cancer center) between 2000 and 2003 were contacted. Twenty-one families agreed to participate in the interview between October 2005 and April 2006. Analysis of the interviews comprised a descriptive part and a thematic part.

Nineteen out of 21 (90%) families declared that they did not really choose their child's place of death due to lack of time. However, all families said that they preferred the hospital. No family attended a bereavement group after their child's death and only 3 families (14%) consulted a mental health care professional. Thematic analysis showed that representations and beliefs concerning life and death at least partly determined the family's capacity to discuss the place of death with their child.

Although progress has been made over recent years in France, there is still considerable room for improvement of palliative care to more effectively meet the needs of young patients and their families at the end of life.

Female partners of cancer patients are at high risk for psychological distress. However, the majority of studies have focused on measurement of female partners' psychological distress during diagnosis and early treatment. There is a gap in the literature with regard to qualitative studies that examine the experiences of female partners of spouses with cancer during the transition to end-of-life care. The purpose of this qualitative study was to explore the meaning of being in transition to end-of-life care among female partners of spouses with cancer.

An interpretive phenomenological approach based on Gadamer's (1960/1975) philosophy was used to gain a deeper understanding of the phenomenon of end-of-life transition. Eight female partners from two in-patient hospices and a community-based palliative care service were interviewed using a semistructured approach.

Three major themes and associated subthemes were identified that outlined female partners' experiences. One major theme, Meaning of Our Lives, included the subthemes Our Relationship, Significance of His Life, and Searching for Understanding. In another theme, Dying with Cancer, partners undertook the Burden of Caring, experienced an Uncertain Path and were Looking for Hope. In the last theme, Glimpses of the Future, participants Faced Tomorrow and confirmed their Capacity to Survive.

The results centered on three major concepts: meaning making, anticipatory mourning, and hope. Although meaning making has been identified as a fundamental way in which bereaved individuals cope with loss, results of this study suggested that female partners made meaning of their situations before their spouses' deaths. Participants also spontaneously described aspects of anticipatory mourning, thus, validating a concept that has been widely accepted despite limited research. Another finding was that participants shouldered the responsibility of adjusting spouses' hopes in order to help them to cope. Implications for practice and research are drawn from these findings.