bluuebunny/crossref_metadata_2025 huggingface dataset:
Demoralization Syndrome — a Relevant Psychiatric Diagnosis for Palliative Care
Authors: Kissane David W. , Clarke David M. , Street Annette F.
Published: April 2019

Hopelessness, loss of meaning, and existential distress are proposed as the core features of the diagnostic category of demoralization syndrome. This syndrome can be differentiated from depression and is recognizable in palliative care settings. It is associated with chronic medical illness, disability, bodily disfigurement, fear of loss of dignity, social isolation, and — where there is a subjective sense of incompetence — feelings of greater dependency on others or the perception of being a burden. Because of the sense of impotence or helplessness, those with the syndrome predictably progress to a desire to die or to commit suicide. A treatment approach is described which has the potential to alleviate the distress caused by this syndrome. Overall, demoralization syndrome has satisfactory face, descriptive, predictive, construct, and divergent validity, suggesting its utility as a diagnostic category in palliative care.
Within the Circle of Care: Patient Experiences of Receiving Palliative Care
Authors: Mckinlay Eileen M.
Published: April 2019

This paper presents an overview of a qualitative study of six recently discharged hospice patients, who had experienced at least two episodes of inpatient palliative care and who were interviewed about their experience of care. The resulting data formed a representation — the Circle of Care — with a central theme being the recognition of patient identity. Other emerging themes were: humour, being watched, caring manner, being safe, chosen isolation, relinquishment and relaxation, keeping control, awareness of mortality, recognition of the palliative care philosophy, and the effect of the aesthetic and spiritual environment.
The Emotions and Coping Strategies of Caregivers of Family Members with a Terminal Cancer
Authors: Grbich Carol , Parker Deborah , Maddocks Ian
Published: April 2019

This study documents the emotional experiences and coping strategies of a group of caregivers as they move from the diagnosis of a close family member with terminal cancer through the stages of caring and post bereavement. Supportive evidence, matching that of previous literature, was gathered regarding the impact of such care, but additional findings counter the notion of “burden” by revealing that strong positive emotions were experienced by these caregivers regarding the opportunity given to them to express their love through care. By contrast and post bereavement, however, intense grief was reported. There appeared to be a complete lack of emotional support throughout from health professionals, particularly in the bereavement phase when need is very apparent.
Clinical Outcomes in Terminally Ill Patients Admitted to Hospice Care: Diagnostic and Therapeutic Interventions
Authors: Vitetta Luis , Kenner David , Kissane David , Sali Avni
Published: April 2019

This study's aim was to determine the impact of medical technologies on patient comfort and survival time, through retrospective review of the clinical course, symptom profile, and illness trajectory in 102 consecutive patients (50 males and 52 females), and of diagnostic and therapeutic interventions delivered to them. The average age of males was 72.3 years and of females 73.1 years. Ninety-four patients were admitted for palliation of symptoms due to malignant disease and eight other patients for non-malignant diseases. The median survival time was 12 days. On admission, higher univariate hazard risks for survival were significantly associated with male gender, metastatic disease, and dyspnea. Higher adjusted Charlson comorbidity scores were associated with significantly decreased survival time, while de novo symptoms and diagnostic interventions were associated with lower univariate risk rates and increased survival times. Palliative therapeutic interventions were not significantly associated with increased patient survival. A multivariate analysis showed that pain, dyspnea, immobility, and adjusted Charlson comorbidity scores were independent risks for shorter patient survival times. Diagnostic interventions were significant for increased patient survival. No requests for euthanasia had been recorded, which may, in part, reflect the significant family support most of these patients had received.
Keeping the Hospice Spirit Alive in Client Satisfaction Surveys
Authors: Mcgrath Pam
Published: April 2019

Funding bodies and accreditation organizations now demand objective data from hospice evaluations, and quantitative measures assessing outcomes. This is despite the fact that the goals and outcomes of hospice practice are not reductionist and are not easily quantified. One alternative to this bureaucratic challenge that does not necessitate compromise to hospice ideology is to develop an assessment tool through qualitative research using phenomenological data on carers’ insights with regard to hospice practice. In this article, the findings from the qualitative research that preceded the development of the assessment tool provide an insight into the key issues that carers give priority in evaluating a hospice. These findings provide valuable baseline data for understanding aspects of hospice practice that are valued by carers. The information gathered is a significant affirmation of the success of the hospice ideology and highlights the need to protect this precious philosophy. In short, it is an important statement about the need to keep the hospice spirit alive in client satisfaction. The findings from the qualitative study for the questionnaire can be interpreted as an affirmation to hospice workers that their vision and beliefs are valued and appreciated by those they serve.
Constructions of Dignity in End-of-Life Care
Authors: Street Annette F. , Kissane David W.
Published: April 2019

The meaning of dignity is commonly assumed but rarely examined in palliative care. Dying with dignity often forms the basis of clinical decision making at the end of life, but is constructed differently depending upon setting and context. A discourse analysis of patient and family case studies found that relationships and embodiment were important aspects of dignity that have been neglected in the literature, although these constructions of dignity matter to dying people and their families. An understanding of these constructions can assist clinicians in providing sensitive palliative care across a range of community and medical settings.
Interviews with Patients, Family, and Caregivers in Amyotrophic Lateral Sclerosis: Comparing Needs
Authors: Bolmsjö Ingrid , Hermerén Göran
Published: April 2019

The emphasis of palliative care has been to support both patients and their family caregivers, and to maintain the caregivers’ involvement through the patient's illness and death. This study challenges the assumption that people with amyotrophic lateral sclerosis (ALS) and those who care for them at home have a similar view the disease, and experience the problems and needs in the same way as professionals. By interviewing ALS patients and close relatives of ALS patients, and by comparing the quotes from the interviews, some differences between these two groups are revealed. The results of the present study show that ALS patients and close relatives of ALS patients differ in at least five respects: they perceive their needs, and they view, judge, and evaluate the disease, as well as the the process of the disease, in different ways. Furthermore, the study suggests that the patients and their close relatives should be viewed as individuals with their own preferences. Moreover, close relatives need someone in whom to confide, and caregivers have specific needs for support and information.
“But isn't it depressing?” The Vitality of Palliative Care
Authors: Webster Judi , Kristjanson Linda J.
Published: April 2019

A common question about palliative care from those unfamiliar with the work is, “But isn't it depressing?” This view distances palliative care workers from the general public and reflects a deeply held belief that matters associated with death and dying are negative. Published definitions fall short of capturing a full understanding of the work, making it difficult to communicate the meaning of palliative care. This qualitative study examined the experiences of six long-term palliative care workers. Palliative care was described as “a way of living” and, throughout the descriptions, the concept of “vitality” emerged as the core meaning of palliative care. In the current economic environment, where there is competition for health care funding, more wide-spread agreement about the meaning of palliative care is important if informed decisions are to be made about allocation of resources.
Antibiotic Use in the Last Week of Life in Three Different Palliative Care Settings
Authors: Oneschuk Doreen , Fainsinger Robin , Demoissac Donna
Published: April 2019

The purpose of this study was to examine the frequency and types of antibiotics prescribed in the last week of life in three different palliative care settings, including an acute care hospital, tertiary palliative care unit, and three hospice units. A total of 150 consecutive patients were evaluated, 50 in each of the three settings. Twenty-nine patients (58%) in the acute hospital setting, 26 (52%) in the tertiary palliative care unit, and 11(22%) in the hospice settings were prescribed antibiotics. In the acute care and tertiary palliative care settings, the most frequent route of antibiotic administration was intravenous and, in the hospice setting, oral. We conclude that there is marked variability in the numbers and types of antibiotics prescribed in these different palliative care settings in the last week of life. The high use of intravenous antibiotics and the large number of patients who were still receiving antibiotics at the time of death indicate the need for further prospective studies.
Addressing Myths about End-of-Life Care: Research into the Use of Acute Care Hospitals over the Last Five Years of Life
Authors: Wilson Donna M. , Truman Corrine D.
Published: April 2019

Despite very little confirming evidence, one of the most pervasive beliefs about dying is that terminally ill people receive a great deal of health care in the last few days, weeks, or months of life. A secondary analysis of 1992/93 through 1996/97 Alberta inpatient hospital abstracts data was undertaken to explore and describe hospital use over the five years before death by all Albertans who died in acute care hospital beds during the 1996/97 year (n=7,429). There were four key findings: (1) hospital use varied, but was most often low, (2) the last hospital stay was infrequently resource intensive, (3) age, gender, and illness did not distinguish use, and (4) most ultra-high users were rural residents, with the majority of care episodes taking place in small, rural hospitals.
What Determines the Quality of Life of Terminally Ill Cancer Patients from Their Own Perspective?
Authors: Cohen S. Robin , Leis Anne
Published: April 2019

Background

Although several instruments have been developed to measure the quality of life (QOL) of palliative care patients, a rigorous research study has not specifically asked patients themselves what is important to their QOL. It is, therefore, not clear whether these instruments measure what is most important to these patients’ QOL.

Purpose

To understand the primary determinants of the QOL of palliative care patients with cancer.

Method

The study used a qualitative paradigm. Participants were interviewed concerning what was important to their QOL. A systematic content analysis of the transcripts was carried out by all the investigators.

Results

Five broad domains were found to be important determinants of patient QOL: (1) the patient's own state, including physical and cognitive functioning, psychological state, and physical condition; (2) quality of palliative care; (3) physical environment; (4) relationships; and (5) outlook.

Conclusions

Existing instruments cover many of these domains, but no single instrument includes all of the relevant content. The McGill Quality of Life Questionnaire, which we developed previously, has been revised based on these data.
Patterns of Symptom Distress in Adults Receiving Treatment for Lung Cancer
Authors: Cooley Mary E. , Short Thomas H. , Moriarty Helene J.
Published: April 2019

Knowledge of the patterns of symptom distress in adults receiving treatment for lung cancer is an important first step in developing interventions that can potentially lessen symptom distress. The purposes of this secondary analysis were to describe the changes in patterns of symptom distress over time in adults receiving treatment for lung cancer, and to examine the relationship of selected demographic and clinical characteristics to symptom distress. Complete data were available for 117 patients. The patterns of symptom distress in adults receiving treatment for lung cancer varied between treatment groups and over time. Symptom distress scores were moderate to high on entry into the study, indicating that symptom management in newly diagnosed lung cancer patients is essential and should begin early in the course of illness. Moreover, clinical interventions should be tailored to the type of treatment. Various demographic and clinical variables were weak and inconsistent predictors of symptom distress, underscoring the importance of examining the role of psychosocial factors in mediating symptom distress.
A Palliative Approach to Existential Issues and Death in End-Stage Dementia Care
Authors: Albinsson Lars , Strang Peter
Published: April 2019

The aim of this study was to investigate how, in relation to the palliative philosophy of care, municipal staff caring for patients with dementia deal with existential issues, the dying process, and bereavement follow up with next of kin. Methods: Thirty-one semi-structured interviews were performed and analyzed using a modified phenomenographic method. Results: Those interviewed experienced existential issues as difficult to handle, and they felt lost. Three patterns of answers emerged: 1) attempting to minimize or ignore the issue, 2) pleading, in relation to the patient, that no one has control over issues concerning life and death, and 3) showing affection for the patient. When faced with dying patients, they made things easier for the family, and their goal was that the patient should not be left alone. No systematic bereavement follow up of next of kin occurred. Discussion: Suggestions are made for improving municipal care, and applying palliative care principles for patients dying of dementia.
A Needs Assessment for Southern Manitoba Physicians for Palliative Care Education
Authors: Barnabé Cheryl , Kirk Peter
Published: April 2019

Recent calls for increased palliative care education of physicians and a need to improve the effectiveness of palliative care delivery in rural areas are the stimuli for this study. The needs assessment evaluated educational needs and preferences of physicians practicing in three Regional Health Authorities in southern Manitoba in 2000, as well as semi-structured interviews with health care workers in seven rural communities. Physicians report their knowledge of symptom management issues as adequate, although for other issues in palliative care such as bereavement, psychosocial aspects of dying, and professional issues, they have less confidence. Physicians prefer learning through case studies, lectures, and self-directed learning, in settings close to their community, on the weekend. Qualitative analysis from the semi-structured interviews revealed themes related to the role of physicians in rural palliative care: i) a need for physician education, ii) physician participation within the palliative care team, and iii) physician involvement in patient-centered care.
Delirium in Advanced Cancer: A Psychoeducational Intervention for Family Caregivers
Authors: Gagnon Pierre , Charbonneau Cécile , Allard Pierre , Soulard Colette , Dumont Serge , Fillion Lise
Published: April 2019

Delirium, a global brain dysfunction, develops frequently in advanced cancer. It is a leading source of distress for family caregivers. Following recommendations from palliative care professionals and caregivers for terminally ill cancer patients, a psychoeducational intervention was implemented in a palliative care hospice to help family caregivers cope with delirium and, eventually, to contribute to early detection. Prior to receiving information on delirium, the majority of the family caregivers did not know what it was or that it could be treated. Few knew that patients in terminal care could become delirious. For caregivers, receiving the intervention increased their confidence they were making good decisions, and the majority felt that all family caregivers should be informed on the risk of delirium (p<0.009). A specific intervention on delirium, tailored to the needs of the family caregivers, seems beneficial for caregivers and for patients.
The Role of the Pharmacist in Palliative Care: Results of a Survey Conducted in Australia and Canada
Authors: Gilbar Peter , Stefaniuk Kimberley
Published: April 2019

A survey was conducted to determine what pharmaceutical services are provided to palliative care sites in Australia and Canada, and the pharmacist's role on the interdisciplinary team. Questionnaires were sent to 100 selected sites in each country. Questions pertained to demographics and the level of duties performed. Australian 42/76 (55.3%) and Canadian 59/69 (85.5%) sites employed palliative care pharmacists. Most Australians (83.3%) and Canadians (69.8%) worked under 20 hours/week on the palliative care service. Administrative duties and basic drug supply functions were more common in Australia, whilst Canadians had greater participation in team meetings and rounds. Medication review was the most common clinical duty; approximately 70% of respondents in each country provided specific advice on pharmacotherapy, administration, treatment, adverse effects, and incompatibilities. Education was universally important, but active participation in conferences, publication, and research was infrequent. Pharmacists in both Australia and Canada are important members of the palliative care team, and provide a similar high level of unique and valuable services to patients and their families.
Pressure Ulcer Prevention and Treatment in Hospices: A Qualitative Analysis
Authors: Eisenberger Andrew , Zeleznik Jomarie
Published: April 2019

There has been little research into pressure ulcer prevention and treatment in hospices. In this study, interviews with hospice directors of clinical services and direct-care nurses were analyzed using qualitative methods. Several general themes were found. Both pressure ulcer prevention and treatment can be painful to hospice patients. Comfort may supersede prevention and wound care when patients are actively dying or have conditions causing them to have a single position of comfort. Family caregivers must face additional burdens when a pressure ulcer develops. In conclusion, hospice providers, patients, and family caregivers together must balance patient comfort with pressure ulcer prevention and treatment, which often leads to decisions to accept death with a pressure ulcer. Future studies should clarify how these parties can best work together, especially to identify when prevention or treatment has become futile.
Hospice Use by Older Women Dying with Breast Cancer between 1991 and 1996
Authors: Lackan Nuha A. , Freeman Jean L. , Goodwin James S.
Published: April 2019

The purpose of this study was to assess the use of hospice by women dying with breast cancer as a function of time period, geographic area, and patient characteristics. We used data from the linked Surveillance, Epidemiology, and End Results (SEER)-Medicare database to study hospice care use in the United States in women aged 65 and older, diagnosed with breast cancer from 1986 to 1996, who died from 1991 to 1996. Of the 25,161 women who met those criteria, 5,198 (20.7%) were enrolled in hospice before they died. The rate of hospice use in this population increased from 11.5% in 1991 to 27.1% in 1996. Use of hospice care was inversely related to age and was higher among those who were married. There were no differences in use by ethnicity. Rates of use varied significantly by geographic area. Future research should further examine why rates of hospice use differ by geographic area and certain patient characteristics.
No Time for Dying: A Study of the Care of Dying Patients in Two Acute Care Australian Hospitals
Authors: Pincombe Jan , Brown Margaret , Mccutcheon Helen
Published: April 2019

Objectives

Research was conducted in two teaching hospitals in Australia to collect data on the care of patients dying in the acute care setting.

Methodology

Non-participant observation of the care of dying patients in medical wards was the primary method of data collection and selected staff were interviewed. Observers collected data on the type of care, who gave the care, and the time given to care. Thematic analysis was applied to both the observational and interview data.

Participants

Patients selected were over the age of 18 years, with a terminal diagnosis and an estimated six days to live.

Results

Three major factors emerged from the data to form the context in which patients were cared for and died: 1) the organizational factor, 2) the environmental factor, and 3) the human factor. The presence or absence of family members influenced the amount of care given. If family members were not present, dying could be an isolating experience, with minimal care focused on routine hospital activities.

Conclusion

This research indicated that the principles of palliative care are yet to be incorporated in the acute care hospital setting.
Women's Decision-Making Needs regarding Place of Care at End of Life
Authors: Murray Mary Ann , O'Connor Annette M. , Fiset Valerie , Viola Raymond
Published: April 2019

Little is known about the decision-making needs of terminally ill women who are considering options for place of care at the end of life. A pilot study was conducted with a sample of 20 terminally ill women with advanced cancer to identify factors taken into consideration in making this decision. Participants were interviewed using a semistructured questionnaire incorporating the domains of quality of end-of-life care and based on the Ottawa Decision Support Framework. Results suggested a gap between the preferred (home, n=13) and the actual (palliative care unit, n=16) place of care. Discrepancies about place of care may be related to conflicting subjective factors such as being a burden to family versus having the opportunity to strengthen relationships with family and friends. Participants who were actively engaged in making the decision scored the highest levels of decisional conflict. Previous studies have shown an association between high decisional conflict scores and decision delay. Although findings from this small study are preliminary, they suggest that the decision regarding place of terminal care is complex with multiple competing factors being considered.
The Pattern of Gabapentin Use in a Tertiary Palliative Care Unit
Authors: Oneschuk Doreen , Al-Shahri M.Z.
Published: April 2019

Background

Little is known about current practice in using the anticonvulsant gabapentin in the management of cancer-related neuropathic pain.

Objectives

The main objective of this study was to describe the pattern of gabapentin use as an adjuvant analgesic for cancer-related neuropathic pain in patients admitted to a tertiary palliative care unit.

Methods

A retrospective medical chart review for 150 patients admitted to a tertiary palliative care unit over a period of 10 months. Abstracted data included patient characteristics, primary diagnoses, pain scores, and the type and dose of opioids and other adjuvants used.

Results

Of the 147 patients with a cancer diagnosis, 45 (31%) had neuropathic pain. Of those, 22 (49%) received gabapentin. The final daily dose of gabapentin ranged from 100 mg-3,000 mg (mean: 941 mg ±665 mg; median: 900 mg). Gabapentin was discontinued in 10 patients (46%). Suggested adverse effects included sedation (n=4), dizziness (n=1), and bitter taste (n=1). The change in pain scores was not significantly different in those who continued on gabapentin compared to those who discontinued it.

Conclusions

The retrospective nature of the study and the small sample size render solid conclusions difficult to make. However, gabapentin was discontinued in approximately half the patients who received it, and often when only modest doses were used. Similar studies from other centres may improve understanding of current practices and aid in designing future clinical trials on the subject.
Determinants of Congruence between the Preferred and Actual Place of Death for Terminally Ill Cancer Patients
Authors: Tang Siew Tzuh , Mccorkle Ruth
Published: April 2019

A prospective cohort study was conducted to explore the extent of congruence and to identify the determinants of congruence between the preferred and actual place of death of terminally ill cancer patients. A total of 180 terminally ill cancer patients were enrolled (87% response rate) and 127 died during the one-year study period. Nearly 90% of the subjects preferred to die at home. One-third achieved their preference for place of death. The kappa value of congruence (κ=0.11, 95% confidence interval=0.05–0.17) indicated poor to slight agreement between the preferred and actual place death. Important determinants of congruence between the preferred and actual place of death for terminally ill cancer patients included rehospitalisation and receiving hospice home care during the final days of life, perceived ability for family to help achieve preferred place of death, and residence in New Haven County.

Conclusions

This study directly confirms that the degree of congruence between the preferred and actual place death is unsatisfactory. Clinical interventions and health policies need to be developed to assist terminally ill cancer patients who may not be able to achieve their preference for place of end-of-life care and death.
Factors Associated with Palliative Care Knowledge among Internal Medicine House Staff
Authors: Clark Jeanne M. , Lurie Jon D. , Claessens Michael T. , Reed Virginia A. , Jernstedt G. Christian , Goodlin Sarah G.
Published: April 2019

Purpose

To assess knowledge and associated factors in palliative care.

Methods

Self-administered survey of 88 internal medicine house officers in 1996.

Results

Twenty-one interns and 36 residents completed the survey for a response rate of 65%. Most house officers reported 1–5 hours of prior formal training in palliative care, 1–5 hours in pain management, and 6–20 hours in ethics. The mean knowledge score was 75% correct (SD=8); pain management scores were lowest (70%). Overall, interns had a significantly lower mean score than residents (70% vs. 77%; p=0.001). In multivariate analysis, only the year of residency was significantly associated with knowledge score; prior formal training in palliative care, pain management, or ethics was not. One third of house officers rated themselves as “not at all” or “only slightly” at ease in caring for a dying patient. These self-ratings were not associated with prior training or knowledge, but were higher in residents compared to interns.

Conclusions

Palliative care knowledge and ease with dying patients were higher in later years of residency but were not associated with prior formal palliative care training. These data highlight the continued need to evaluate and improve training in palliative care and pain management.
Esophageal Stents in Malignant Dysphagia: A Two-Edged Sword?
Authors: Neale Janet C. , Goulden John W. , Allan Simon G. , Dixon Peter D. , Isaacs Richard J.
Published: April 2019

Dysphagia from mechanical esophageal obstruction in patients with advanced malignancy is a common and debilitating symptom in patients referred to palliative care services. Relief of such dysphagia is often attempted by insertion of an esophageal stent in the hope that this will improve the quality of life for these patients. We describe a series of 39 patients who had an esophageal stent inserted under radiologic guidance for malignant dysphagia over an 82-month period. While the stents were clearly effective at relieving dysphagia, they also induced significant comorbidity, in particular, moderate to severe chest pain occurring in 46% and reflux esophagitis in 26% of our non-selected patient group. In addition we found an eight percent mortality rate from esophageal bleeding following stent insertion. When discussing the potential role of esophageal stent insertion with patients under the care of palliative care teams, the frequency and severity of these significant secondary symptoms need to be considered.
The Status of Undergraduate Palliative Medicine Education in Canada: A 2001 Survey
Authors: Oneschuk Doreen , Moloughney Brent , Jones-Mclean Elaine , Challis Andrea
Published: April 2019

A survey was conducted in fall 2001/spring 2002 to provide an update on the status of undergraduate palliative medicine education in Canada. The survey identified that the majority of palliative care teaching occurs in the pre-clinical years of medical school, with supervised patient encounters occurring primarily during electives. The coverage of palliative care topics is inconsistent across curricula. Student evaluation methods also vary, with only one school using simulated patients. More than half the schools have an academic division or department of palliative care medicine, although faculty with protected academic time are few in number. A number of barriers to palliative medicine education were identified, including competition for time within the undergraduate curriculum, and lack of resources for curriculum development and teaching. Respondents recommended increased clinical exposure, curriculum development, student assessment and evaluation, faculty development, and improved infrastructure. Following these recommendations, the Undergraduate Palliative Medicine Committee has dedicated itself to developing and fostering a strategic implementation plan to improve palliative medicine education in Canadian medical schools.
Quality End-of-Life Care in Long-Term Care Facilities: Service Providers’ Perspective
Authors: Brazil Kevin , McAiney Carrie , Caron-O'Brien Michelle , Kelley Mary Lou , O'Krafka Paul , Sturdy-Smith Cathy
Published: April 2019

The goal of this project was to provide guidance on what constitutes quality end-of-life care in long-term care (LTC) facilities. Seventy-nine direct care providers from six LTC facilities participated in 12 focus groups. The focus group discussions examined what made the difference between a “good” death and a “bad” death, and what changes in LTC would improve the care of dying residents. Analyses of the focus group data revealed six themes that contribute to quality end-of-life care in LTC facilities: responding to resident needs, creating a homelike environment, supports for families, providing quality care processes, recognizing death as a significant event, and having sufficient institutional resources. These findings challenge policy makers and providers to consider how to normalize life and death in LTC facilities.
Dignity and Psychotherapeutic Considerations in End-of-Life Care
Authors: Chochinov Harvey Max , Hack Thomas , Hassard Thomas , Kristjanson Linda J. , McClement Susan , Harlos Mike
Published: April 2019

The basic tenets of palliative care are frequently subsumed under the goal of helping patients to die with dignity. Our research group has studied the issue of dignity, with dying patients serving as the primary informants. This paper reviews some of our findings, including an overview of the Dignity Model that derives from our empirical work. Furthermore, this paper summarizes various psychotherapeutic approaches which have been considered for this vulnerable patient population. Finally, we provide the rationale based on the Dignity Model for a psychotherapeutic intervention we have coined Dignity Therapy. This brief, individualized therapeutic approach has been informed by our dignity work, and specifically designed for application in patients nearing death.
Unilateral Withholding and Withdrawal of Potentially Life-Sustaining Treatment: A Violation of Dignity under the Law in Canada
Authors: Downie Jocelyn
Published: April 2019

In this paper, I review Canadian law in relation to the unilateral withholding or withdrawal of Potentially life-sustaining treatment, and I look at such questions as whether physicians are legally permitted to unilaterally put a do-not-resuscitate (DNR) order on a patient's chart. I explore who has the legal authority in Canada to decide on withholding and withdrawal of potentially life-sustaining treatment, and I conclude that unilateral withholding and withdrawal is a violation of the strong social commitment to dignity as it is understood and reflected in the law by the Supreme Court of Canada. I then offer a concrete proposal for institutional policy with respect to unilateral withholding and withdrawal of treatment in light of the law.
Pity, Modernity and the Spectacle of Suffering
Authors: Radley Alan
Published: April 2019

The concept of dignity is often invoked in relation to ideas about a “good” death and, indeed, a “good” life. In this article, I discuss the question of dignity in relation to the rights of the individual in the modern world. This world is one where the relationship of individuals to society is contested in the context of medicine, with all its technologies of treatment and uncertainties of prognosis. For patients who criticize or oppose medicine in order to recover their dignity, it is necessary to articulate or to portray their suffering. In this way, they are able to show not only that they live in spite of illness, but that they also live by virtue of it. From this perspective, dignity is shown to be part of a collective response to a medicalized world in which ideas about illness and health are also being transformed.
Living and Dying with Dignity: Reflections on Lived Experience
Authors: Toombs S. Kay
Published: April 2019

Considerations of human dignity figure prominently in discussions of health care, and are central in the debate with regard to end-of-life care and the issue of physician-assisted suicide. In this paper I reflect on my experience as a person living with multiple sclerosis in order to explore ways in which prevailing cultural values contribute to the loss of dignity that accompanies incurable illness and disability. I suggest that authentic Christian community may offer an alternative culture with a radically different value system, one that enhances human dignity.
Family Caregivers’ Experiences and Involvement with Cancer Pain Management
Authors: Yates Patsy , Aranda Sanchia , Edwards Helen , Nash Robyn , Skerman Helen , Mccarthy Alexandra
Published: April 2019

The purpose of this descriptive cross-sectional study was to describe family caregiver involvement in and perceptions of cancer pain management. A consecutively recruited cohort of 75 patient-caregiver dyads attending an outpatient oncology clinic completed self-report questionnaires comprising standardized and investigator-developed measures of pain behaviours and experiences. Family caregivers reported high levels of confidence and willingness to participate in pain management, and extensive involvement in pain management activities including supporting, decision making, and communicating about pain. At the same time, many caregivers experienced a great deal of distress and some difficulties in performing these activities. The significance and scope of these caregiving experiences suggest that developing the caregiver's ability to effectively contribute to pain management is an important priority in efforts to improve cancer pain management.
Family Perceptions of End-of-Life Care in Long-Term Care Facilities
Authors: Vohra Julie Uma , Brazil Kevin , Hanna Steven , Abelson Julia
Published: April 2019

The study examined the utility of the Family Perception of Care Scale (FPCS), which consists of four subscales: resident care, family support, communication, and rooming. This instrument was developed for the purposes of this study. Overall, family members were satisfied with end-of-life care. Satisfaction did not have a statistically significant relationship to family and resident characteristics. Survey questions with the highest number of low satisfaction ratings included staffing levels, updating families and involving them in care planning, and decision making. Family members considered pain control an important priority, followed by comfort care that included caring for a family member with dignity and sensitivity. Family members also valued it when staff were able to inform them that the death of their family member was near. Place of death was significantly associated with satisfaction, family members being more satisfied with end-of-life care when their family member died in the LTC facility as opposed to in hospital.
Physician Practices for Prescribing Supplemental Oxygen in the Palliative Care Setting
Authors: Stringer Elizabeth , McParland Colm , Hernandez Paul
Published: April 2019

Dyspnea is a disturbing symptom frequently experienced by patients with advanced cancer. Supplemental oxygen is commonly used as palliative treatment in this setting. We undertook a telephone survey of physicians authorized to prescribe home oxygen according to eligibility criteria determined by publicly funded home care service. A clinical case was varied by addition of one to four factors: presence or absence of dyspnea, hypoxemia, private insurance, and a “dummy” factor to give 20 scenarios. Respondents decided whether to prescribe oxygen and rated degree of benefit oxygen would provide. Physician response rate was 81%. Respondents were in complete agreement in 44% of scenarios. The presence of breathlessness or hypoxemia affected the decision to prescribe oxygen; availability of private insurance did not. There was a wide range of perceived benefits to oxygen prescription. In conclusion, physician practices for prescribing supplemental oxygen in the palliative care setting are variable. Further research is needed.
Navigating Uncharted Territory: Experiences of Families when a Child is Dying
Authors: Steele Rose
Published: April 2019

In this grounded theory study, eight families moved through a process of navigating uncharted territory as they lived with their child who was dying from a neurodegenerative illness. The emotions of fear, uncertainty, and grief gave impetus to the process. Families lived much of their lives on Plateaus of relative stability, where they often felt alone and isolated from health care professionals. Periods of instability led to families dropping off the Plateau. Living with a dying child had profound physical, emotional, and financial effects on families. The process was characterized by four dimensions. Parents used strategies within these dimensions to manage the physical, cognitive, and emotional work arising from the situation. These dimensions and strategies were constrained and facilitated by four intervening conditions. In addition, the process occurred within the broader context of the acute, curative health care system and the sociocultural environment. Suggestions for practice and research are offered to assist health care professionals in providing optimal care to these families.
Understanding Family Responses to Life-Limiting Illness: In-depth Interviews with Hospice Patients and Their Family Members
Authors: Waldrop Deborah P. , Milch Robert A. , Skretny Judith A.
Published: April 2019

Understanding family dynamics is a key component in providing comprehensive care for persons with progressive illnesses and their caregivers. The purpose of this study was to investigate what families experience during an advancing illness and to describe their patterns of response. In-depth interviews (n=108) were conducted with families two weeks after hospice admission. Interviews were tape recorded, transcribed, and analyzed using qualitative methods. Six modes were distilled: reactive (illness generates intense responses), advocacy (vulnerability ignites assertive actions), fused (illness and decline are shared experiences), dissonant (diametrically opposed viewpoints cause struggle), resigned (decline and death are anticipated), and closed (outward responses are impassive). Three events triggered movement from one mode to another: (1) functional changes, (2) crisis events, and (3) provider communication. Providers who understand varied family reactions can ease the patient's suffering, assist relatives in providing effective care, and prepare them for the approaching death.
End-of-Life Care in Acute Care Hospitals in Canada: A Quality Finish?
Authors: Heyland Daren K. , Groll Dianne , Rocker Graeme , Dodek Peter , Gafni Amiram , Tranmer Joan , Pichora Deb , Lazar Neil , Kutsogiannis Jim , Shortt Sam , Lam Miu ,   see appendix for complete list of authors and contributors
Published: April 2019

Understanding patients’ and family members’ perspectives on the relative importance of elements of end-of-life (EOL) care and their satisfaction with those elements will help prioritize quality improvement initiatives. We administered a face-to-face questionnaire containing a selection of 28 elements of care to eligible in patients with advanced lung, heart, or liver disease, or metastatic cancer, and available family caregivers (FCGs) in five tertiary care hospitals across Canada. 440 of 569 (78%) eligible patients and 160 of 176 (91%) FCGs participated. No respondent reported complete satisfaction with all elements of care. The average satisfaction score was 4.6 on a 26 point scale. Medical patients reported lower levels of satisfaction than cancer patients. Elements rated as “extremely important” and anything other than “completely satisfied” most frequently by respondents related to discharge planning, availability of home health services, symptom relief, not being a burden, physician trust, and communication. In conclusion, most patients and their family members in our survey were not completely satisfied with EOL care. Improvement initiatives to target key elements identified by patients and FCGs have the potential to improve satisfaction with EOL care across care settings.
Communication about Palliative Care for Patients with Chronic Obstructive Pulmonary Disease
Authors: Curtis J. Randall , Engelberg Ruth A. , Wenrich Marjorie D. , Au David H.
Published: April 2019

Chronic obstructive pulmonary disease (COPD) is a leading cause of mortality and disability Worldwide. For many patients, maximal therapy for COPD produces only modest relief of disabling symptoms and these symptoms result in a significantly reduced quality of life. Despite the high morbidity and mortality, patients with COPD do not receive adequate palliative care. One reason these patients may receive poor quality palliative care is that patient-physician communication about palliative and EOL care is unlikely to occur. The purpose of this review is to summarize recent research regarding patient-physician communication about palliative care for patients with COPD. Understanding the barriers to this communication may be an important step to improving communication about EOL care and improving patient-centred outcomes. Two areas that may influence the quality of care received by patients with COPD are also highlighted: 1) the role of depression, a common problem in patients with COPD, in physician-patient communication; and 2) the role of advance care planning in this communication. Further research is needed to develop and test interventions that can enhance patient-physician communication about palliative and EOL care for patients with COPD, and we describe our perspective on a research agenda in each area.
Issues in Pediatric Palliative Care: Understanding Families
Authors: Bartell Abraham S. , Kissane David W.
Published: April 2019

While family-centred care has always been Part of the rhetoric of hospice and palliative care, few models have been developed that successfully integrate care of the caregivers into the overall schema. Systematic analyses of interventions have failed to produce any demonstrable benefit to families arising from the modern practice of palliative care. This alarming finding constitutes the greatest challenge for the 21st century. Pediatric palliative care may have much to teach in its approach to family care. Family-focused grief therapy is one model, used with both adolescent and adult families, that has promise for the field. The time has surely arrived for palliative medicine to focus on family-based research.
Assessing Quality of Life of Patients with Advanced Chronic Obstructive Pulmonary Disease in the End of Life
Authors: Pang Samantha M.C. , Chan Kin-Sang , Chung Betty P.M. , Lau Kam-Shing , Leung Edward M.F. , Leung Amanda W.K. , Chan Helen Y.L. , Chan Tony M.F.
Published: April 2019

Given the limitations of existing health-related quality-of-life (QOL) measures in capturing the end-of-life experience of patients with advanced chronic diseases, an empirically grounded instrument, the quality-of-life concerns in the end of life questionnaire (QOLC-E), was developed. Though it was built on the McGill quality of life questionnaire (MQOL), its sphere is more holistic and culturally specific for the Chinese patients in Hong Kong. One hundred and forty-nine patients with advanced chronic obstructive pulmonary disease (COPD) or metastatic cancer completed the questionnaire. Seven factors (28 items) which emerged from the factor analysis were grouped into four positive (support, value of life, food-related concerns, and healthcare concerns) and four negative (physical discomfort, negative emotions, sense of alienation, and existential distress) subscales. Good internal consistency and concurrent validity were shown. The results also revealed that these two groups of patients had similar QOL concerns. The validity of applying QOLC-E as an outcome measure to evaluate the effectiveness of palliative and psychoexistential interventions has yet to be tested.
Children's Perspectives of a Pediatric Hospice Program
Authors: Davies Betty , Collins John B. , Steele Rose , Cook Karen , Brenner Amy , Smith Stephany
Published: April 2019

Little attention has been paid to documenting the experiences of children in pediatric palliative care programs, both those who are ill and their siblings. In this evaluation study of Canuck Place, a Canadian, free-standing hospice program, 26 ill children and 41 of their siblings completed mail-out questionnaires. In addition, four ill children and 10 siblings participated in face-to-face interviews. Results indicate that nearly all children were enthusiastic about the program's activities and the physical environment at Canuck Place. Engaging activities, physical amenities, and the social climate promoted by staff, volunteers, and other families were important contributors to the children's satisfaction. Suggestions for better serving adolescents included: a wider range of age-appropriate activities, games, and toys—especially for teens and older children; more trips and tours outside the building and around town; and caring staff and volunteers who are “attentive-in-the-moment”. From the children's perspective, the key to Canuck Place's success is its social climate of caring, safety, friendliness, acceptance, and variety.