This study examines predictors of caregiver distress among community-based palliative care clients. Analyses are based upon interRAI Palliative Care (interRAI PC) assessment data from palliative home care programs in three regions in Ontario, Canada.

The study sample involved all community-based palliative care clients in Ontario who were assessed with the interRAI PC as part of normal clinical practice during pilot implementation of the instrument between 2007 and 2009 (N = 3,929). The assessments were performed by trained case managers and were used as the basis for determining service needs to be addressed through services contracted from provider agencies. The main study outcome of interest was the presence of one or more indicators of caregiver distress: helper(s) unable to continue caring activities; primary informal helper expresses feelings of distress, anger, or depression; family or close friends report feeling overwhelmed by person's illness.

Caregiver distress was evident among about 22% of palliative home care clients. Multivariate analyses identified included clinical instability (Changes in Health, End Stage disease, Signs and Symptoms [CHESS] scale), depressive symptoms, cognitive impairment, and positive outlook as significant client-level predictors. Significant caregiver characteristics included hours of informal care. Three service use/provider variables were significant predictors of caregiver distress: the specific home care agency, hospitalizations in the last 90 days, and nursing visits.

Caregiver distress affects approximately one in five palliative care clients in the community. This may lead to a number of adverse outcomes for the caregiver and client. The experience of distress is affected by client, caregiver, and agency characteristics that are readily identified by the interRAI PC assessment instrument. The present results point to the need for a care planning protocol that may be used on a targeted basis for clients experiencing or at elevated risk of caregiver distress.

The purpose of this study was to assess the feasibility of dignity therapy for the frail elderly.

Participants were recruited from personal care units contained within a large rehabilitation and long-term care facility in Winnipeg, Manitoba. Two groups of participants were identified; residents who were cognitively able to directly take part in dignity therapy, and residents who, because of cognitive impairment, required that family member(s) take part in dignity therapy on their behalf. Qualitative and quantitative methods were applied in determining responses to dignity therapy from direct participants, proxy participants, and healthcare providers (HCPs).

Twelve cognitively intact residents completed dignity therapy; 11 cognitively impaired residents were represented in the study by way of family member proxies. The majority of cognitively intact residents found dignity therapy to be helpful; the majority of proxy participants indicated that dignity therapy would be helpful to them and their families. In both groups, HCPs reported the benefits of dignity therapy in terms of changing the way they perceived the resident, teaching them things about the resident they did not previously know; the vast majority indicated that they would recommend it for other residents and their families.

This study introduces evidence that dignity therapy has a role to play among the frail elderly. It also suggests that whether residents take part directly or by way of family proxies, the acquired benefits—and the effects on healthcare staff—make this area one meriting further study.

The purpose of this study was to describe the value of a formal room blessing ritual held within a long-term care facility, from the perspectives of staff, residents, and family members.

A qualitative research study involving interviews with staff, residents, and family members was conducted to examine the perceived value of a room blessing ritual.

Twenty-four room blessing attendees participated in the study (nine staff, eight residents, and seven family members). Attendees felt that the room blessing provided an opportunity to formally acknowledge the death of the resident and their grief; the majority felt that this was a positive experience and that it provided an element of closure. Staff members and residents expressed their appreciation for the opportunity to connect with family members of the deceased to express their condolences during the ritual. Participants also identified the inclusivity of the ritual (i.e., an open invitation to all staff, residents, and family members) as a positive aspect that served as a reminder that others shared in their grief. Staff members felt that blessing the room for the new resident was an important component of the ritual, helping to bridge the gap between mourning and welcoming a new person. Staff, residents, and family members felt that the room blessing positively reflected the mission and values of the facility. The most highly valued aspect of the ritual for all attendees was the sharing of stories about the deceased to celebrate that person's life.

Long-term care facilities need to recognize that formal supports to manage the bereavement needs of staff and residents, such as a room blessing ritual, should be incorporated into their model for managing end-of-life care, given the relationship between the emotional health of staff and the quality of care provided for residents.

Advance care planning (ACP) has the potential to enhance end-of-life care, yet often fails to live up to that potential. This qualitative interpretive study was designed to explore the process and outcomes of ACP using the patient-centered Advance Care Planning Interview (PC-ACP) developed by the Respecting Choices® program in Wisconsin.

Patients diagnosed with advanced lung cancer and close family members were recruited. Nine family dyads participated in the PC-ACP interview, which was audio-recorded. Follow-up interviews took place 3 and 6 months after the PC-ACP interview and were also recorded. Thematic analysis was conducted on transcribed interviews using constant comparison.

Analysis showed that hope was a significant theme in the ACP process and this article reports on that theme. Hope for a cure was one of many hopes that supported quality of life for the participant dyads. Three themes were identified: hope is multifaceted, hope for a cure is well considered, and hope is resilient and persistent. The seeming paradox of hoping for a cure of an incurable cancer did not interfere with the process of ACP. The dyads engaged in explicit discussions of end-of-life scenarios and preferences for care. ACP did not interfere with hope and hope for a cure did not interfere with ACP.

Concerns about false hope are called into question. The principle of honoring hope is not necessarily in conflict with the principle of truthful communication. This is clinically significant, as the findings suggest we need not disrupt hope that we think of as “unrealistic” as long as it supports the family to live well. Further, ACP can be successful even in the context of hoping for a cure.

The purpose of this study was to determine whether the presence of gynecologic malignancies predicts the likelihood of a tertiary palliative care unit hospital admission.

In this study, patients admitted to a specialized tertiary palliative care unit (TPCU) with gynecologic malignancies were compared to national and provincial death rates to determine if gynecologic malignancy predicts admission, and subsequent death, in a TPCU.

Eighty-two gynecologic cancer patients were admitted to our TPCU over the 5- year study period. Out of all cancer deaths in the TPCU, death from ovarian cancer was 3.7% compared with 2.4% (p = 0.0068) of all cancer deaths in Manitoba and 2.3% (p = 0.0043) of all cancer deaths in Canada. Cervical cancer accounted for 1.7% of all our patients deaths compared with 0.7% (p = 0.0001) provincially and 0.6% (p = 0.0001) nationally. Uterine cancer deaths were not significantly different from the provincial and national death rates, whereas vulvar and fallopian cancers were too rare to allow for statistical analysis.

Gynecologic cancers may be predictive of admission to a palliative care unit.

The aim of the present pilot study was to investigate insomnia, sleep quality, and daytime sleepiness in relatives of dying patients cared for at home.

The study has a descriptive, comparative, and cross-sectional design. The sample consisted of relatives of patients cared for through palliative home care in Uppsala County on 3 specific days. Relatives completed a questionnaire consisting of demographic questions, and items from the Insomnia Severity Index (ISI), the Epworth Sleepiness Scale (ESS), and the Richard Campell Sleep Questionnaire (RCSQ).

Seventy-five relatives answered the questionnaire. The average total ISI score was 9.6, with 23% reporting moderate or severe clinical insomnia. The mean sleep duration was 6.5 hours, the mean assessed need of sleep was 8 hours, and the mean discrepancy was 1 hour. The total mean ESS score was 5.6 and only 15% of respondents reported excessive daytime sleepiness. Four percent scored very poor sleep quality, whereas 39% scored very good sleep quality (RCSQ). Two general age- and gender-related patterns were observed. Negative correlations were found between age and sleep problems, with younger relatives reporting more insomnia problems and more daytime sleepiness than did older relatives. The other general pattern was that womens' sleep quality was significantly inferior to that of men. A significant positive correlation was found between ISI and ESS, but not between RCSQ and ESS.

The picture of the relatives' sleep condition is fairly complex. A minority reported clinical insomnia problems or excessive daytime sleepiness, and 73% reported getting less sleep than they wanted.

The purpose of this study was to assess the extent to which vulnerability was present or heightened as a result of either disability or end-of-life policies, or both, when people with disabilities face end of life.

People with disabilities and policy makers from four Canadian provinces and at the federal level were interviewed or participated in focus groups to identify interactions between disability policies and end-of-life policies. Relevant policy documents in each jurisdiction were also analyzed. Key theme analysis was used on transcripts and policy documents. Fact sheets identifying five key issues were developed and shared in the four provinces with policy makers and people with disabilities.

Examples of heightened vulnerability are evident in discontinuity from formal healthcare providers with knowledge of conditions and impairments, separation from informal care providers and support systems, and lack of coordination with and gaps in disability-related supports. When policies seek to increase the dignity, autonomy, and capacity of all individuals, including those who experience heightened vulnerability, they can mitigate or lessen some of the vulnerability.

Specific policies addressing access to community-based palliative care, coordination between long-standing formal care providers and new care providers, and support and respect for informal care providers, can redress these heightened vulnerabilities. The interactions between disability and end-of-life policies can be used to create inclusive end-of-life policies, resulting in better end-of-life care for all people, including people with disabilities.

Although the Short-Term Life Review elevated the spiritual well-being of terminally ill cancer patients in our previous study, we have not examined what patients reviewed for each question item of it. We examined factors in narratives to questions in the Short-Term Life Review interviews of terminally ill cancer patients and utility of the questions.

Thirty-four terminally ill cancer patients received the Short-Term Life Review interview in which there were two sessions. In the first session patients reviewed their lives, and an interviewer made a simple album of the patient based on patients' narrative. After 1 week, there was a second session. Qualitative analysis was conducted on patients' answers to each question using computational word mining, and factors were identified.

Twenty patients' narratives were analyzed. “Human relationships” was identified under “important things in life.” “Pleasant memories” were associated with “impressive memories.” “Illness” and “marriage and divorce” were related to “turning points in the life.” “Raising children and education” and “company or work” were identified as “roles in life.” “Achievements at work” were identified with “pride.” “Message to my children” was identified with “what I want to say to my family.” “To live sincerely” and “consideration for others” were identified as “advice for the next generation.” Patients reviewed few for topics such as “pride,” “what I want to say to my family,” “advice for the next generation,” and “summing up my life.”

Factors such as human relationships, raising children, and education as a role and source of pride, and concerns about children's future, were associated with elevating spiritual well-being. Question to which that patients easily answered were selected.

The aim of the art therapy study was twofold: 1) to identify the specific factors of the art therapy experience perceived as helpful by patients undergoing an allogenic hemopoietic stem cell transplant (HSCT); and 2) to establish an appropriate criterion for referral to art therapy among this population.

Between 2006 and 2010, a dedicated art therapist met all the patients who were referred to her by the hematologist. The art therapy approach and techniques are described. Outcome was evaluated by self-assessment, based on written questionnaires that were given to the patients before discharge.

Seventy-four patients followed the weekly individual sessions during isolation and filled out the questionnaire. All of them defined the art therapy experience as “helpful” and specified in which way it had been helpful. Through a thematic analysis of the patients' written comments, three specific aspects of art therapy, which the patients found most helpful, were identified: (1) being able to calm down from anxiety, through the use of art therapy techniques (77.02%); (2) feeling free to express and share difficult feelings, which they had not communicated verbally (75.67%); and (3) establishing meaningful connections with their loved ones, through images made in art therapy (36.48%). Case illustrations are provided.

The results suggest that referral to art therapy from the team might be helpful and appropriate: (1) when patients are anxious; (2) when they are uncommunicative and hide their feelings; and (3) when they feel disconnected from their loved ones at home.

The notion of “suffering” is understood in very different ways in a variety of contexts. In palliative care, the relief and prevention of suffering is considered to be a fundamental goal (Pastrana et al., 2008). However, the avoidance of suffering has also been used as an argument by those campaigning for the legalization of euthanasia and assisted suicide (Finlay, 2009). In reflecting upon suffering in these two contexts, we were intrigued by Finlay's (2009) contention that to laypeople, the phrase “‘unbearable suffering’ conjures up images of patients on their deathbeds wracked with uncontrolled pain” (p. 1841).

This article explores how suffering is used and understood in an “everyday” discourse, by analyzing comments posted to a website debating assisted suicide in the context of the Canadian case of Sue Rodriguez.

Using a broad social approach to discourse analysis (Tonkiss, 2004), three themes emerged in our analysis: (1) when people suffer, (2) how people are understood to suffer, and (3) how suffering should be dealt with. We also examined what was not said in this discussion: there was little consideration of the more holistic goals of palliative care and how suffering might be understood and managed in ways other than within the frame of assisted suicide.

Paying attention to the everyday discourse of suffering is important because, as members of society, we all play a role in negotiating the meaning of suffering. Such meaning has a significant impact upon patients and palliative care professionals alike.

Depression is a frequent problem in cancer patients, which is known to reduce quality of life; however, many cancer patients with depression are not treated because of the difficulties in assessing depression in this population. Our aim was to evaluate and improve the depression assessment strategies of palliative care (PC) physicians and oncologists.

We invited all medical oncologists and PC physicians from three cancer centers to participate in this multicenter prospective study. They were asked to classify 22 symptoms (related and specific to depression in cancer patients, related but not specific, and unrelated) as “very important,” “important,” “less important,” or “not important” for the diagnosis of depression in cancer patients, at three different time points (at baseline, after a video education program, and after 4 weeks). They were also asked to complete a questionnaire exploring physicians' perceptions of depression and of their role in its systematic screening.

All 34 eligible physicians participated. Baseline performance was good, with >70% of participants correctly classifying at least seven of nine related and specific symptoms. We found no significant improvement in scores in the immediate and 4-week follow-up tests. Additionally, 24 (83%) and 23 (79%) participants expressed support for systematic depression screening and a role for oncologists in screening, respectively.

Oncologists had good baseline knowledge about depression's main symptoms in cancer patients and a positive attitude toward being involved in screening. Underdiagnosis of depression is probably related to problems associated with the oncology working environment rather than the physicians' knowledge.

Palliative care services are becoming more commonplace in hospitals and have the potential to reduce hospital costs through length of stay reduction and remediation of symptoms. However, there has been little systematic attempt to identify when a palliative care consultation should be triggered in a hospital, and there is some evidence that these services are under-utilized and not fully understood.

In an initial attempt to address when a consultation might be appropriate, we attempted to pilot test a novel palliative care screening tool to help guide clinician judgment in this regard. A one-page, face-valid instrument was developed using expert opinion.

The sample comprised 33 men (44.6%) and 41 women (55.4%) with an average age of 63.4 years (SD = 13.8) and an average length of stay of 22.7 days (SD = 10.1). The most significant symptom was pain, indicated as moderate-to-severe in 23 patients (31%). This was followed by fatigue (n = 10, 13.5%) and nausea (n = 6, 8.1%). At unit entry, 20 patients (33%) had moderate or severe pain. Upon discharge, this number had been reduced to 12/60 (20%). Chi-Square analysis showed a significant decrease in pain rankings overall (χ2 = 36.3, p < 0.0001). The average total tool score was 7.5 (SD = 3.1). Using an initial threshold of 12 to trigger a palliative care referral, 64 patients (86.5%) would not have received a referral and 10 (13.5%) would have. Of these 10 patients, 2 (20%) did not receive a palliative care consultation while they were hospitalized.

The tool we developed increased consultations over the time period in which it was used, compared with the same time period 1 year prior. Although the threshold developed for triggering referrals seemed artificially high, the implementation of the screening tool did increase referrals.

The purpose of this study was to examine the experiences of breast cancer patients participating in a support group.

This study explores 28 stories of women with breast cancer as expressed through written diaries. Diaries were written during a 5-week period in parallel with radiotherapy and participation in a support group in a hospital. Answers to six open-ended evaluative questions concerning the support group were included in the majority of the written diaries. A qualitative content analysis was used to identify themes.

Three themes were constructed during the analysis: “positive group development.” “Inhibited group development.” and “the individual living with the disease.” Hopes and fears for the future in regards to illness and getting better, the value of family and friends, and feelings related to daily life with breast cancer such as fatigue and changes in body image were also expressed in the diaries.

The findings suggest that the women with breast cancer found it valuable to be able to share experiences with other women in a similar situation in the context of a support group. Being part of such a group provided a space and an opportunity for reflection.

The purpose of this article is to identify how inclusive and accessible palliative care can be achieved for all, including those labelled as vulnerable populations.

Drawing on a review of existing literature as well the research of the Vulnerable Persons and End-of-Life New Emerging Team (VP-NET), this article reflects on what changes can be made within palliative care to make it more inclusive.

Experiences of marginalization often result, intentionally or unintentionally, in differential treatment in healthcare. This increased vulnerability may result from attitudes of healthcare providers or from barriers as a result of “normal” care practices and policies that may exclude or stigmatize certain populations. This may include identifying when palliative care is necessary, who receives palliative care and where, and what is necessary to complement palliative care.

Inclusive and accessible palliative care can become possible through building on the existing strengths in palliative care, as well as addressing existing barriers. This may include treating the whole person and that person's support team, including paid support workers, as part of the unit of care. It involves ensuring physically accessible hospice and palliative care locations, as well as thinking creatively about how to include those excluded in traditional locations. Inclusive palliative care also ensures coordination with other care services. Addressing the barriers to access, and inclusion of those who have been excluded within existing palliative care services, will ensure better palliative and end-of-life care for everyone.

The objective of this study was to describe the experience of undertaking meaning and purpose (MaP) therapy for patients with advanced cancer, with an aim of refining therapeutic processes involved prior to pilot testing. Specifically, we were interested in examining the themes arising from participation in the intervention in relation to our therapeutic goals, and how acceptable both the number of sessions and processes used were.

A convenience sample of people living with advanced cancer was recruited to participate in this process, resulting in 24 therapy sessions for analysis.

A thematic analysis of each session illustrated that the process of MaP therapy is one that encourages reflection, offers insights, and can be confrontational, but can also allow participants to “shift” their perspective and focus onto meaningful goals. Results illustrate how the therapist creates a therapeutic frame that holds up a poignant portrayal of the meaning of life lived, and mirrors this to the patient, such that they grasp its rich texture. Participants' descriptions showed how they were buoyed forward as a result, with renewed vigor and enthusiasm, despite their illness and any physical restrictions that it imposed.

A planned pilot test of this intervention will enable us to determine potential effect sizes of this therapy in reducing distress and increasing meaning prior to a full randomized controlled trial. Understanding the processes involved and the experiences of participation in meaning-based therapies is crucial to the future strength of this area of psychotherapy.

Bereaved mothers have expressed the need to maintain a bond with their children who have died, to retain control over the funeral rituals, and to express their loss to others who are empathetic. This study describes grief over the loss of a child in women who have been or are currently incarcerated, and the influence of the women's family members.

This descriptive qualitative study consisted of open-ended interview questions to encourage the women to describe their experience in their own words. A purposive sample (N = 10) was recruited from a prison re-entry program and a county jail.

All of the participants described maladaptive responses such as the use of alcohol and drugs, restricted family support, and dysfunctional coping. None of the participants had received focused bereavement services.

The descriptive perspective from the participants can inform clinicians who work with women who have a history of involvement with the criminal justice system, and recommends that they should inquire about the women's children and experiences with loss. Community re-entry and jail/prison counselors should provide access to confidential and group-based therapeutic support, including Compassionate Friends.