Although race and ethnic background are known to be important factors in the completion of advance directives, there is a dearth of literature specifically investigating the effect of race and ethnicity on advance directive completion rate after palliative care consultation (PCC).

A chart review of all patients seen by the PCC service in an academic hospital over a 9-month period was performed. Data were compiled using gender, race, ethnicity, religion, and primary diagnosis. For this study, advance directives were defined as: “Do Not Resuscitate” (DNR) and/or “Do Not Intubate” (DNI).

Of the 400 medical records reviewed, 57% of patients were female and 71.3% documented their religion as Christian. The most common documented diagnosis was cancer (39.5%). Forty-seven percent reported their race as white. White patients completed more advance directives than did nonwhite patients both before (25.67% vs. 12.68%) and after (59.36% vs. 40.84%) PCC. There was a significantly higher proportion of whites who signed an advance directive after a PCC than of nonwhites (p = 0.021); of the 139 whites who did not have an advance directive at admission, 63 signed an advance directive after a PCC compared with 186/60 nonwhites (45% vs. 32%, respectively, p = 0.021). Further analysis revealed that African Americans differed from whites in the likelihood of advance directive execution rates pre-PCC, but not post-PCC.

This study demonstrates the impact of a PCC on the completion of advance directives, on both whites and nonwhites. The PCC Intervention significantly reduced differences between whites and African Americans in completing advance directives, which have been consistently documented in the end-of-life literature.

The aim of this study was to compare self-estimates of the physical, psychological, and general well-being of patients with amyotrophic lateral sclerosis (ALS) and their next of kin with the assessment of the nurses and physician of these participants.

The well-being of 35 pairs of patients and their next of kin was rated by themselves, and by a physician and nurses. The well-being was examined over time, using a visual analogue scale (VAS). Patients' physical function was estimated at the same time with the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised and the Norris scale.

The correlations between the staff's estimates of the well-being of patients and next of kin were similar to their own estimates, even though staff to a higher degree estimated a decrease in well-being over time among the patients. The estimates by the nurses correlated better to that of the patients and next of kin in psychological and general well-being than the physicians' estimates did.

Even though the staff's estimates of participants were roughly equivalent to their self-estimates, there were some differences. This result calls attention to the importance of working in teams in which different professional roles are combined and integrated, making it possible to form a holistic view of the situation of each family. A concern overlooked by one member of staff might be covered by another, and different focuses on the family may give a better composite picture of their life situation, which could lead to better support to the family.

The purpose of this study was to explore the impact of advanced cancer patients' denial on their family caregivers and how they cope, in order to enable clinicians to better support them and their caregiving.

As the objective was to obtain clinically useful findings, an interpretive descriptive design was used. Data consisted of prospective semi-structured interviews with 16 family caregivers of advanced cancer patients in denial, field notes, reflexive journals, and memos during the analysis.

Caregivers experienced extra burdens with the patient's denial. Feeling bound to preserve the denial, which they perceived as immutable, they were prevented from seeking information to manage the patient's care. Additionally, those caring for noncompliant patients felt disenfranchised from their role, resulting in feelings of powerlessness and guilt, and felt burdened by managing medical situations that arose from noncompliance. Caregivers described the ambivalence of feeling frustrated and burdened by the denial while recognizing it as a long-standing coping pattern for the patient. The denial prevented them from acknowledging their own needs to the patients or seeking informal support. They therefore developed solitary coping strategies, sought professional psychosocial support, and/or employed denial themselves.

Caregivers of patients in denial experience added burdens, which they must bear without most of the usual sources of support. The burden is accentuated when patients are noncompliant with care, placing themselves in dangerous situations. Healthcare providers should identify patients in denial and support their caregivers in meeting both their caregiving and their own needs. Evidence-based strategies to accomplish this should be developed and implemented.

The philosophy underlying palliative care places the respect of patients and their autonomy at the heart of clinical practice. A study was conducted at a palliative care facility to document changes that occurred after the integration of a person-centered approach focusing on human freedom (which is linked to autonomy): the humanbecoming school of thought. It aimed to describe changes observed in the beliefs and practices of healthcare providers, the concept and respect of autonomy by healthcare providers, care and respect of autonomy experienced by patients' relatives, and consideration of patients' wishes through their documentation.

The method adopted consisted of a pre-project – process – post-project descriptive qualitative design and was inspired by teaching-learning and mentoring models. Data were collected from 51 healthcare providers and 10 relatives through semistructured interviews and from the medical records of 30 patients during the pre- and post-project phases. They were analyzed and compared at the end of the study. The process phase consisted of offering training sessions and mentoring, encouraging the involvement of healthcare providers, and cocreating integration and care tools.

While the analysis exposed some discrepancies with the language of the approach and differences between nurses and other healthcare providers, it revealed, above all, similarities in the changes observed between the different sources of data. The focus moved from being task-centered to being person-centered; the affirmation of the priority of respecting patients' choices, desires, and needs; a presence shifting from being available to true listening; the affirmation of following the ever-changing rhythm of the patient; and a notion of respect of autonomy now including the other.

In line with the philosophy of palliative care, the project demonstrated that the integration of the humanbecoming approach can result in changes that contribute to the development of a more person-centered practice.

With spirituality being one of the most important components of end-of-life (EOL) care, this study explored the oral responses of 44 dying persons who expressed spirituality.

Four identified spiritual themes: religious systems of beliefs and values, life meaning, purpose and connections with others, nonreligious systems of beliefs and values, and metaphysical or transcendental phenomena served as a framework for a content analysis of 91 spiritual references.

From the content analysis, eight interrelated and separate themes emerged. Although the highest number of responses centered on religious beliefs and values, nonreligious beliefs and values that included reason, dignity, mental discipline, and communion were expressed. The themes of life meaning, purpose, and connections with others also surfaced as important aspects of EOL spirituality.

The findings support the need for hospice/palliative care professionals to approach spirituality from other than a Judeo-Christian viewpoint, help dying persons create meaning and purpose within the context of their lives, and assist them in their desire for connectedness to faith communities and other significant individuals in their lives.

The study was designed to explore the subjective perspective on end-of-life practices in three different groups of pediatric onco-hematologic nurses.

In 2004–2005 each member of the nursing staff of the Pediatric Onco-Hematology Ward of the University of Padua, Italy, and the Oncology Ward and Home Assistance Module of the Giannetta Gaslini Hospital, Genoa, Italy was interviewed using a semistructured questionnaire with open questions on end-of-life procedures. The results were returned to the interviewees through group meetings. Here, we examine replies given regarding terminal sedation.

With regard to the nurses from Padua, common features came together in a consolidated practice. The amount of suffering and physical pain was considered an element in determining the use of sedation: “when there is atrocious suffering.” Another aspect was “painful awareness,” the difficulty in being able to bear the fact that the child is aware that death is imminent. The nurses from Genoa stated that the procedure was adopted mainly for three reasons: to sedate the pain, to calm the hunger for air, and to control the anguish caused by the realization that death was imminent or unavoidable. It was noted that the nursing staff of the Home Assistance Unit, Genoa found themselves in a privileged position regarding this procedure both because of the strong relationship established among child, parents, and nurse, and because of being able to take shared decisions after in-depth discussion.

The results enlighten the critical role of the nursing staff with respect to this procedure, given the involvement with the families and their ability to understand the child's demands and intimate expectations.

The traditional relationship between patient and physician in East Asian society has often been described as “paternalistic.” However, in an increasingly Westernized world, our knowledge of how patients perceive the role of the physician in their decision making regarding treatment is lacking.

This article is part of a larger pilot study exploring the patient–physician dynamic on decision making among Southeast Asian palliative cancer patients. We explore: (1) influence of physicians, (2) the effect of symptom control and quality of life, and (3) dynamics and communication of physicians.

An interviewer-administered questionnaire was distributed, with 18 questions related to physician–patient interactions asked. Most questions followed a three point scale: “agree,” “neutral,” and “disagree,” and spontaneous answers beyond this framework were recorded.

Thirty patients from the palliative care service were interviewed, including inpatients at Singapore General Hospital and those attending outpatient clinics at the National Cancer Centre.

Patients said that they themselves and their physicians were the main influences (80% each), over family members (48.3%). Some patients (26.7%) felt that symptoms were not well controlled, and 42.9% identified low mood or anxiety. Some patients (44.8%) felt that their condition had an effect on decision making. Most patients (89.3%) had a good relationship with the staff, with >80% being comfortable with discussions held. However, 20.7% of patients felt dissatisfied with the information provided, and 62.1% of patients wanted full disclosure of information.

Patients appeared to place highest regard in both autonomy and physician input in making decisions, accompanied by an increased desire for more information. These reflect deviation away from traditional thinking of paternalistic doctoring in East Asia.

Considering recent inconsistent findings on ethnic differences in cancer pain experience, there is a need to clarify the association of ethnicity to cancer pain experience through diverse approaches. However, there currently exist only a small number of studies on ethnic differences in cancer pain experience in general, and few symptom cluster studies specifically related to ethnic differences in cancer pain experience. The purpose of this study was to cluster cancer patients who reported similar cancer pain experience, and to determine ethnic differences in the clusters.

This was a secondary analysis of the data from a larger Internet study on cancer pain experience of four major ethnic groups of cancer patients in the United States. Only 388 subjects who responded to the questions on cancer pain, cancer symptoms, and functional status were included for this secondary analysis. The data were analyzed using hierarchical cluster analysis and multinomial logistic analysis.

A three-cluster solution was adopted: 1) Cluster 1 with low pain, low symptoms, and high functional status, 2) Cluster 2 with moderate pain, low symptoms, and moderate functional staus, and 3) Cluster 3 with high pain, moderate symptoms, and low functional status. In Cluster 2, there were ethnic difference in the cancer pain and funtional status scores; Asian Americans reported lower pain scores than did other ethnic groups, and African Americans had higher funtional status scores than did other ethnic groups. In Cluster 3, there were ethnic difference in the symptom scores (p < 0.05); African Americans reported higher symptom scores than did whites.

The results of this study add an important piece of information on ethnic differences in symptom clusters. This study suggests further national scope studies on clustering multiethnic groups of cancer patients by cancer pain experience.

The purpose of this study is to describe the post-treatment goals of colorectal cancer (CRC) survivors. We sought to determine whether goals were a salient concept during the period immediately following treatment, and whether a goal-setting intervention might be feasible and acceptable to these patients.

Semi-structured qualitative interviews were administered to a convenience sample of 41 CRC patients who were 0–24 months post-treatment. Topics discussed included expectations and goals for future health, cancer prevention awareness, health-promoting behavior-change goals, and post-treatment cancer issues. Content analysis was used to explore emergent themes.

Overall, participants’ health-related goals were: being healthy, getting back to normal, and not having a cancer recurrence. Most of the CRC survivors reported being proactive with their health by maintaining healthy behaviors or making healthy behavior changes, or had goals to change their behavior. All respondents had plans to maintain follow-up care and regular screening appointments. Some patients were managing treatment side effects or non-cancer issues that limited their functional abilities. Many respondents were satisfied with the care they received, and felt it was now their responsibility to do their part in taking care of themselves.

CRC survivors talk about goals, and many of them are either making or have an interest in making health behavior changes. Self-management support could be an appropriate strategy to assist patients with achieving their health goals post-treatment. Patients may need help addressing lingering treatment side effects or non-cancer issues. Healthcare providers should consider assessing patients’ goals to help patients resolve post-treatment issues and promote healthy behaviors.

The provision of emotional and psychological support for all family members who need it is an essential element of holistic palliative care. Within East Anglia's Children's Hospice, teams of professionally trained and experienced workers offer psychosocial support to all family members at all times during the child's and family's journey. However, the effectiveness and appropriateness of current psychosocial provision is unclear, as is the requirement for any additional psychological services.

The purpose of this study was to elicit perceptions about current psychological support within the hospice from a group of stakeholders (parents, hospice staff, and external professionals).

Forty-five parents participated in family focus groups, telephone interviews, individual interviews in their home, or a web-based survey. Ninety-five hospice staff (including nurses, carers, play specialists, therapists, and family support practitioners) and 28 external staff (including physicians, nurses, and commissioning managers) were seen using a mixture of focus group and individual meetings. Focus groups and meetings were held at the hospice building or at an external venue. Interviews were recorded and transcribed verbatim and analyzed using thematic coding.

Two main themes addressing perceptions of current psychological provision emerged: “understanding psychological support” and “unmet psychological need.” Subthemes linked to support included choice, staff roles and labels, communication, and flexibility, whereas the themes within unmet need had a stronger focus on people and problems.

Understanding different user perspectives is an important first step in enhancing current psychological provision; operationalizing the findings will be challenging.

Children and young adults with severe disabilities and their families are faced with enormous challenges throughout the lifespan, including admitting the child to a long-term care facility (LTCF) and making end-of-life (EOL) care decisions. While children are residents of these specialized LTCF, the majority of their daily care, even up until death, is provided by nursing aides or habilitation aides (HAs) with limited training and educational backgrounds compared with other licensed healthcare providers. The purpose of this study was to determine the impact of a resident's EOL experience on the primary HAs and parents/guardians.

Thirty-five resident deaths occurred at Hattie Larlham Center for Children with Disabilities (HLCCD) between January 1, 2006 and February 28, 2009. The HAs and parents/legal guardians were identified for each death and invited to complete three surveys per resident (FAMCARE, Impact of Events Scale (IES)-revised, and Perspective on End-of-Life Care) to assess their experience. There were 112 surveys mailed to 62 HAs and 47 surveys mailed to 47 parents.

Forty-two surveys were returned from 18/62 HAs (response rate 29%) and 11/47 parents/legal guardians completed the surveys (response rate 23%). The FAMCARE survey found that parents were more satisfied with the EOL care than were the HAs. The IES-revised found no difference in traumatic responses from either group. Comments from the Perspective on End-of-Life Care survey were analyzed qualitatively for common themes including pain control, respect, decision making, environmental needs, resources, and support.

Because of a low response rate, it was difficult to draw significant conclusions; however, several interesting trends were noted regarding the number of deaths HAs experienced, satisfaction with care, and distress. The special needs of this population and their caregivers can provide crucial insights into interventions (e.g. chaplaincy support, debriefings, anticipatory counseling, environmental changes) that might be of benefit for any caregiver or parent of a child with a long-term, chronic condition, particularly involving developmental disability.

Quality of life is an ill-defined term, as it means different things to different people. Quality of life has been well researched, especially with respect to people with cancer, but not necessarily from the perspective of the patient, and also, not in Third World, resource-poor countries. The objective of this study was to explore quality of life from the perspective of palliative care patients managed at a palliative care clinic serving a resource-poor community in Tshwane, South Africa.

An exploratory, qualitative phenomenological study was conducted. The target population for this study was all patients managed at a palliative care clinic serving a resource-poor community in Tshwane. Self-report data were gathered by means of in-depth interviews. The data were analyzed using a template analysis style as well as content analysis using open coding. Data analysis was done concurrently with data gathering. Data saturation was reached after 10 interviews (n = 10).

Three themes arose from the data: factors that had a positive influence on quality of life, factors that had a negative influence on quality of life, and experience of quality of life. Work played the most important role in quality of life whereas only one participant linked symptom control with quality of life. Experiencing symptoms, rejection, and stigmatization had a negative influence on quality of life. Friends and religion played a significant role and added to quality of life.

Life was a daily struggle for survival. Poverty was so overwhelming that quality of life was primarily measured in terms of the ability to buy food and other basic commodities.