bluuebunny/crossref_metadata_2025 huggingface dataset:
Humanitarian exploits: Ordinary displacement and the political economy of the global refugee regime
Authors: Ramsay Georgina
Published: April 2019

Can the displacement of refugees continue to be understood as exceptional? The recent global increase in refugees has prompted calls to develop new solutions to displacement that focus on integrating refugees into the local economies of nations that receive them. Transforming refugees from economic burdens to economic benefits does not, however, resolve displacement: doing so only shifts the project of refugee protection from a supposedly humanitarian imperative to an economic incentive. Examining how political economy intersects with moral economy in the global refugee regime by drawing on fieldwork conducted with refugees in Uganda and Australia, I describe how efforts to incorporate refugees into local economies not only fail to resolve their displacement but serve to exacerbate it, with such ‘humanitarian exploits’ transforming refugees from recipients of humanitarian aid to highly exploitable workers who are, in their words, unable to ‘make a life’. I consider that continuing to analyse refugees as objects of humanitarian intervention rather than actors in a globalised political economy is a way to reproduce the exceptionality of refugee experiences and conceal how their lives are implicated within and indicative of new formations of global capitalism. Not only is the displacement of refugees not exceptional: it is emblematic of an increasingly globalised experience of ordinary displacement through which citizenship and civic rights are stratified by reducing the value of human life to the potential to extract economic productivity.
Free speech versus marginalized groups: Public and newspaper responses to the Charlie Hebdo attack
Authors: Liu Juan , Shafi Ashik
Published: April 2019

This study explores how British and American newspapers covered the 2015 terrorist attack on Charlie Hebdo. British newspapers prioritize free speech and the protection of marginalized groups compared with American ones, but both countries differentiate Muslims from radical terrorists. Attention to news media coverage of the attack is positively related to public approval of publishing the cartoons, supporting press freedom. Implications for free speech debate over Charlie Hebdo are discussed.
Comparison of CMA Joint Statement on Resuscitative Interventions and New Brunswick Hospital Corporations’ Policies on End-of-Life Treatments
Authors: Poirier Norma
Published: April 2019

Why do most physicians have so much difficulty respecting the wishes of their terminally ill patients who refuse treatment? The normative pluralism model is introduced to answer this question. Comparative content analysis serves as the theoretical framework for evaluating the Canadian Medical Association Joint Statement on Resuscitative Interventions against the corresponding administrative policies of New Brunswick hospital corporations and relevant New Brunswick law. Despite protection afforded patients by law, fully 75% of New Brunswick hospital corporations’ administrative policies permit physicians to ignore patients’ expressed objection to treatments. The futility-of-treatment criteria in the CMA joint statement and in all provincial hospital corporations’ policies authorize physicians to substitute their judgment for patients’ expressed refusal of CPR. The author concludes that when medical professional norms conflict with the law, physicians tend to follow their professional normative order.
Family Medicine Residents’ Knowledge and Attitudes about End-of-life Care
Authors: Burge Frederick , Mcintyre Paul , Kaufman David , Frager Gerri , Pollett Ann
Published: April 2019

The medical management of end-of-life symptoms, and the psychosocial care of the dying and their families have not been a specific part of the curriculum for undergraduate medical students or residency training programs. The purpose of our research was to assess family medicine residents’ knowledge of and attitudes toward care of the dying. All entering (PGY1) and exiting (PGY2) residents of the Dalhousie University Family Medicine Residency Program were given a 50-item survey on end-of-life care. The survey contains two 25-item subscales concerning attitudes/opinions toward end-of-life care, and knowledge about care. Thirty-one of the 33 entering PGY1s (94%) and 26 of the 30 exiting PGY2s (86%) completed the surveys. Overall attitude scores were felt to be high among both groups, with little difference between them. Areas of concern regarding the adequacy of knowledge were found in relation to managing opioid drugs and the symptom of dyspnea. Interventions are now in development to address these issues in the residency program. In an era of subspecialties, the challenge of integrating these areas into the curriculum without creating rotations in specialist palliative care is an issue faced by most family medicine residency programs.
Assessing the Need for and Potential Role of a Day Hospice: A Qualitative Study
Authors: Lohfeld Lynne H. , Tschopp Annie Sandberg , Trevor Andrew W. , Brazil Kevin , Krueger Paul
Published: April 2019

We conducted a qualitative case study as part of a needs assessment for a day hospice in a small Ontario city. Data were gathered from semi-structured interviews with 28 stakeholders: nine health care administrators, 11 health care providers, and eight lay people (terminally ill adults and informal caregivers). Respondents described support, counselling, social activities, and respite as key day hospice services. They also described several barriers to accessing services, including location, transportation, admission criteria, referrals, and fees. For most respondents, the ideal staff mix includes both volunteers and paid professionals in either a free-standing organization or institutionally linked hospice. Although the vast majority of participants were reluctant to impose admission criteria or other limitations on hospice clientele, they expressed the need to ensure equitable access to this scarce resource. Opinions varied greatly across stakeholder groups, highlighting the need to collect information from all relevant stakeholder groups when planning hospices.
Dying in Canada: Is It an Institutionalized, Technologically Supported Experience?
Authors: Heyland Daren K. , Lavery James V. , Tranmer Joan E. , Shortt S.E.D. , Taylor Sandra J.
Published: April 2019

Although preliminary evidence shows that people generally prefer to die at home, very little is known about where Canadians die. Understanding the epidemiology of dying in Canada may illuminate opportunities to improve quality of end-of-life care and related health policy. We conducted a cross-sectional analysis of death records in Canada to determine the proportions of deaths occurring in hospitals and special care units. Our analysis found that deaths in Canada occur in hospitals with provincial and territorial proportions ranging from 87% in Quebec to 52% in the Northwest Territories. In hospitals recording deaths in special care units, 18.64% of all deaths occurred in special care units. The proportion of deaths in special care units ranged from 25% in Manitoba to 7% in the Northwest Territories. The proportion of deaths in special care units varied by size and nature (teaching vs. non-teaching) of hospitals. It increased with the size of the hospital from 8% in hospitals with 1–49 beds, to 23% for hospitals with 400 or more beds. In teaching hospitals, 27% of deaths occurred in special care units, and in non-teaching hospitals the proportion was 15%. In conclusion, the majority of deaths in Canada occur in hospitals and a substantial proportion occur in special care units, raising questions about the appropriateness and quality of current end-of-life care practices in Canada.
Analgesia, Virtue, and the Principle of Double Effect
Authors: Hawryluck Laura A. , Harvey William R.C.
Published: April 2019

The principle of double effect is widely used to permit the administration of narcotics and sedatives with the intent to palliate dying patients, even though the administration of these drugs may cause hastening of death. In recent medical literature, this principle's validity has been severely criticized, causing health care providers to fear providing good palliative care. Most of the criticisms levelled at the principle of double effect arise from misconceptions about its purpose and origins. This discussion will explore how virtue-based ethics can overcome the most important challenge to the principle of double effect's validity, that of its reliance on intention to determine whether the administration of analgesia is ethically acceptable.
Pattern of Drug Use by Advanced Cancer Patients Followed at Home
Authors: Mercadante Sebastiano , Fulfaro Fabio , Casuccio Alessandra
Published: April 2019

The aim of this study was to document the drugs most commonly prescribed to control symptoms in advanced cancer patients being followed at home. We analyzed data for 128 patients admitted to a home palliative care program from January 1993 to January 1995. All patients were followed at home until death by a team consisting of doctors and nurses, and were given two or three medical examinations a week. The most frequently prescribed drugs were analgesics and drugs commonly used to prevent NSAID-induced gastric toxicity. Slow-release morphine was the analgesic used most often. Most patients received more than four drugs. Younger people received morphine more often than did older patients.

Conclusions

Drug monitoring is a useful audit tool for verifying the quality and quantity of drugs prescribed for advanced cancer patients being followed at home. Pharmacological usage should be reviewed periodically and should reflect evidence-based practice.
Palliative Care on the Net: An Online Survey of Health Care Professionals
Authors: Pereira Jose , Bruera Eduardo , Quan Hue
Published: April 2019

A survey was conducted to explore Internet use by palliative care health professionals (HCP). The survey was placed on the World Wide Web with an underlying database, and palliative care HCP were invited to participate via a palliativecare-related website, listserv, and newsletter. A total of 417 evaluable responses were received over a four-month period. Of these, 36% indicated they were from physicians and 30% from nurses, a third of respondents were practicing palliative care full time. Although 63% of respondents were from North America, regions from all over the world were represented. Eighty-eight percent of respondents were searching the Internet for clinical information, 80% were using email, 69% were accessing online medical journals, and 59% were subscribers to a palliativecare-related listserv or newsgroup. This survey illustrates the global outreach of the Internet and draws attention to the growing interest in the use of the Internet for education, research, and clinical use. Further development of online resources should address the needs of users. Evaluation of these resources is called for.
Computerized Quality-of-Life Screening in a Cancer Pain Clinic
Authors: Carlson Linda E. , Speca Michael , Hagen Neil , Taenzer Paul
Published: April 2019

Methods

To determine the utility and acceptability to patients and staff of a computerized quality-of-life (QOL) screening program in a tertiary ambulatory cancer pain clinic, patients were administered the computerized EORTC-QLQ-C30 questionnaire. A report summarizing this QOL information was given to clinic staff prior to each patient's appointment. Both the patient and the clinical staff were surveyed afterwards.

Results

Although more than half of the 46 patients had never used a computer before, almost all reported that the program was easy to use and understand, enjoyable, helpful, and quick. Their attitudes toward computers significantly improved from pre- to post-assessment. Staff found the QOL information to be appropriate and useful.

Conclusions

The computerized questionnaire was readily used by patients and was helpful to pain clinic staff, making it an appropriate tool for identifying important QOL problems and issues in busy clinical settings, even for inexperienced computer users with significant functional impairment.
An Evaluation of Systematic Reviews of Palliative Care Services
Authors: Goodwin Danielle M , Higginson Irene J. , Edwards Adrian G.K. , Finlay Ilora G. , Cook Alison M. , Hood Kerry , Douglas Hannah-Rose , Normand Charles E.
Published: April 2019

This review aimed to identify and appraise all systematic reviews of palliative care services, to examine their findings in relation to methods used, and to explore whether further methods such as meta-analysis and meta-regression may be worthwhile. Ten databases were searched and augmented by hand searching specific journals, contacting authors, and examining the reference lists of all papers retrieved. Five systematic reviews met the inclusion criteria, and the update electronic search identified a further systematic review which found similar studies. A total of 39 studies were identified by the five systematic reviews. Of the 39 studies, 15 were RCTS, and 12 of those were North American. In comparison, the majority of U.K. studies were retrospective. Each review concluded similarly that there was a lack of good quality evidence on which to base conclusions. The more recent reviews were more rigorous, but none used a quantitative analysis. Despite the difficulties in combining heterogeneous interventions and outcomes in meta-analysis or meta-regression, such techniques may be valuable. More high quality evidence is needed to compare the relative merits of the differences in models of palliative care services, so that countries can learn from other appropriate systems of care at end of life.
Long-Term Safety and Clinical Effectiveness of Controlled-Release Metoclopramide in Cancer-Associated Dyspepsia Syndrome: A Multicentre Evaluation
Authors: Wilson Jonathan , Plourde Jean-Yves , Marshall Denise , Yoshida Sam , Chow Winston , Harsanyi Zoltan , Pearen Susan , Darke Andrew
Published: April 2019

Patients with cancer frequently report gastrointestinal symptoms such as anorexia, early satiety, nausea, vomiting, and bloating. A reduction of the severity of some of these symptoms would benefit the patient by enhancing quality of life and improving their treatment. Forty-eight patients (25 female and 23 male; mean age 63 ±11 years) with a minimum two-week history of cancer-associated gastrointestinal symptoms were assigned to a single, open-label treatment group and received controlled-release metoclopramide 20 mg–80 mg q12h for a maximum period of 12 weeks (mean 46 ±35 days). There was a 40%-60% decrease in the severity of nausea over the first two weeks of treatment, and an approximate 50% reduction in severity of vomiting over the first four weeks of treatment. Appetite and bloating also improved, although smaller and less consistent changes were observed. Patient ratings of overall clinical effectiveness with respect to relief from symptoms and tolerability of side effects indicated that controlled-release metoclopramide was highly and moderately effective in 36% and 30% of the patients, respectively. Controlled-release metoclopramide is a useful treatment for the management of gastrointestinal symptoms associated with the cancer-associated dyspepsia syndrome including nausea, vomiting, loss of appetite, and bloating.
Analytic Framework for Clinician Provision of End-of-Life Care
Authors: Johnston Grace , Burge Frederick
Published: April 2019

Four dimensions for the provision of end-of-life care by clinicians were identified from a review and synthesis of the Canadian family physician and palliative care literatures. These dimensions are: clinician-patient continuity, timing and location of care, community-centred services, and multidisciplinary care. Indicators of each dimension are presented along with criteria for indicator selection. The analytic framework was refined during the linkage of population-based administrative databases to identify patterns of family physician service provision in the last months of life for persons dying from cancer in Nova Scotia, Canada. Data analysis was framed to inform palliative care policy and programs, as well as to enable comparison among geographic areas within and beyond Canada.
The Cultural Differences in Perceived Value of Disclosure and Cognition: Spain and Canada
Authors: Fainsinger Robin L. , Núñez-Olarte Juan M. , Demoissac Donna M.
Published: April 2019

A previous multicentre international study on sedation at the end of life has detected major differences between Canadian and Spanish patients. This was particularly evident in the need to sedate Spanish patients for psychological/existential distress. This study was designed to explore the hypothesis that marked differences in the value patients and families attach to disclosure and cognition were a factor. The study population included patients referred to two palliative care consulting services based in acute care hospitals in Madrid, Spain (M), and in Edmonton, Canada (E). Questions addressed the issue of clear thinking, pain/nausea-medication-induced somnolence/confusion, anxiety/antidepressant-medication-induced somnolence/confusion, details of diagnosis. One hundred patients were evaluated on each site. Patients and families in E placed a higher value on clear thinking, change in medication causing somnolence/confusion, and wanting full disclosure. Patients and families in E agreed almost 100% of the time, while agreement in M varied from 42% to 67%. These results suggest major differences in the perceived value of clear cognition and disclosure of information between patients and families in E and M. The lack of agreement between patients and families in M is a further significant factor that may complicate communication with patients and families, as well as medical management.
Legitimating Do-not-Resuscitate Orders: A Discursive Study of Cancer Patients’ Speech
Authors: Eliott Jaklin A. , Olver Ian N.
Published: April 2019

This article examines how patients with cancer construct and legitimate do-not-resuscitate (DNR) orders. Semi-structured interviews with 23 outpatients attending an oncology clinic were tape-recorded, transcribed, and analyzed in accordance with discourse-analytic methodology. Results indicate some variability for participants regarding the meaning of DNR orders, which were nonetheless viewed as appropriate and desirable. The patient's subsequent death was legitimated primarily through the invocation of highly valorized discourses within Western society: nature, autonomy, and compassion. Non-compliance with DNR orders, or the instigation of CPR was seen as violating nature, infringing autonomy, and as uncompassionate. The combined effect was to construct dying as a natural event which is the concern of the individual patient and their family, endorsing medical non-intervention in the process. This research provides support, from the patients’ viewpoint, for a policy of non-intervention when death is imminent and inevitable, and for those questioning the wisdom of a default policy of initiating CPR on any hospitalized patient, especially those patients inevitably in the process of dying.
Professional Competence and Palliative Care: An Ethical Perspective
Authors: Olthuis Gert , Dekkers Wim
Published: April 2019

The aim of this article is to explore an ethical view of professional competence by examining the professional competence of physicians in the context of palliative care. A discussion of the four dimensions of professional competence—knowledge, technical skills, relationships, and affective and moral attitude—leads us to the conclusion that “habits of mind” are important in every aspect of professional competence. This observation is then considered in the context of virtue ethics and ethics of care. Virtue ethics focuses on personal qualities and moral attitudes, while the ethics of care concentrates on the way these qualities are lived out in specific care relationships. Our conclusion points up the importance of education in ethics in the development of professional competence, and argues that because palliative care involves intense human interactions, integrating palliative care into the medical curriculum may improve the ethical culture of health care as a whole.
Caregiver Bereavement Outcome: Relationship with Hospice at Home, Satisfaction with Care, and Home Death
Authors: Grande Gunn E. , Farquhar Morag C. , Barclay Stephen I.G. , Todd Chris J.
Published: April 2019

This study used a randomized controlled trial design to investigate the impact of hospice at home (HAH) on caregiver bereavement outcome. Secondary analyses considered the association between bereavement, place of death, and carers’ assessment of support. Ninety-six informal carers of patients referred to HAH were surveyed six weeks post-bereavement about the quality of terminal care. Carers next completed measures of their own bereavement response and general health six months post-bereavement. There was no evidence that HAH had an impact on bereavement outcome. In contrast, perceptions of inadequate terminal support and high symptom severity were associated with worse carer bereavement response. However, it remains unclear whether carers’ retrospective ratings constitute an accurate account of symptoms and care. Home deaths were associated with both better bereavement response and better physical health post-bereavement than were inpatient deaths. Further research is needed to investigate the implications of death at home for the carer.
Thrombosis and Anticoagulation in Palliative Care: An Evolving Clinical Challenge
Authors: Kirkova Jordanka , Fainsinger Robin L.
Published: April 2019

There is a clear recognition of the relationship between thrombosis and neoplastic diseases. In recent years, there have been a few reports dealing with some of the features of clinical progression and management of venous thromboembolism (VTE) in palliative care patients. In this report, we present four cases that describe some of the diverse aspects of this clinically challenging area to illustrate the symptom and quality of life issues for patients, and the management challenge for palliative care clinicians. Perhaps the most important issue in the palliative care setting is the need to balance the inconvenience of the various diagnostic and therapeutic options, particularly in settings where progression has resulted in a deteriorated physical and cognitive condition. We need to recognize that VTE does cause significant problems for some of our patients. We will always need to balance issues of life expectancy, comfort and quality of life, and risk and benefits of anticoagulation, and align these problems with the individual patient, and the family dynamics and desires we encounter.
Death, Dignity, and Moral Nonsense
Authors: Pullman Daryl
Published: April 2019

Although the concept of human dignity is widely invoked in discussions regarding end-of-life decision making, the content of the notion is ambiguous. Such ambiguity has led some to conclude that human dignity is a redundant or even useless concept that we would be better off without. This paper argues, to the contrary, that the concept of human dignity is indispensable to moral discourse. Far from dispensing with human dignity, we must work to clarify the concept. The paper outlines two distinct but related conceptions of dignity that are often conflated in contemporary moral discourse. These conceptions are labelled “basic dignity” and “personal dignity”, respectively. It is argued that basic dignity functions as a universal meaning constraint on moral discourse in general. Hence, to dispense with the notion could reduce us to speaking moral nonsense. Throughout the discussion, some implications for our understanding of end-of-life decision making are explored.
The French Version of the Palliative Care Quiz for Nursing (PCQN-F): Development and Evaluation
Authors: Carroll Gisèle , Brisson Diane Prud'Homme , Ross Margaret M. , Labbé Raymonde
Published: April 2019

This article describes the process and outcomes of translating the Palliative Care Quiz for Nursing into French (PCQN-F). A process of decentering, translation/back-translation, and review served to ensure grammatical, structural, and conceptual equivalence with the English version of the quiz. A total of 189 nursing personnel participated in the evaluation. Evaluation involved determining overall responses to the quiz, item to total correlations, reliability, mean score comparisons, and the most frequent misconceptions about palliative care nursing. Our initial review demonstrates the face and content validity of the PCQN-F. Further testing is encouraged to more fully demonstrate its psychometric and educational properties.
Physicians’ and Pharmacists’ Attitudes toward the use of Sedation at the End of Life: Influence of Prognosis and Type of Suffering
Authors: Blondeau Danielle , Roy Louis , Dumont Serge , Godin Gaston , Martineau Isabelle
Published: April 2019

End-of-life sedation remains a controversial and ill-defined clinical practice; its applications vary considerably. With this in mind, a study was conducted using a 2 × 2 experimental design. The variables experimented with were prognosis (short- or long-term) and type of suffering (physical or existential). The goal was to study the influence of the two independent variables on attitude toward sedation. Four clinical vignettes were completed by 124 clinicians, doctors, and pharmacists working in different palliative care environments in the Province of Quebec. The results indicate that the type of suffering influences a subject's attitude to end-of-life sedation. Thus, when a patient was suffering physically, the respondents were significantly in favour of sedation, whereas they were not in favour of this practice if the suffering was existential. Lastly, it is clear that health professionals are uncomfortable when confronted with their patients’ existential suffering. This is an issue worth exploring in future studies.
Religiousness and Major Depression among Bereaved Family Caregivers: A 13–Month Follow-Up Study
Authors: Fenix J.B. , Cherlin Emily J. , Prigerson Holly G. , Johnson-Hurzeler Rosemary , Kasl Stanislav V. , Bradley Elizabeth H.
Published: April 2019

Objective

To examine the association between a multi-item measure of religiousness and major depressive disorder (MDD) in bereaved family caregivers of patients with cancer.

Design

A prospective longitudinal study of primary caregivers of consecutive patients (n=175) with cancer enrolled in the largest hospice in Connecticut.

Results

Caregivers with a high religiousness summary score were significantly less likely to have MDD at the 13–month follow-up interview (OR=0.79, 95% CI: 0.68–0.91). This finding remained significant (OR=0.74, 95% CI: 0.59–0.91) after adjustment for caregiver MDD at baseline, caregiver age, caregiver burden, and number of activities restricted due to caregiving roles.

Conclusions

Family caregivers who reported greater religiousness at baseline had lower rates of depression in the 13–month follow up after their loss. Collaboration with religious support groups or community groups during bereavement could offer an effective mechanism for speeding the process of recovery for some caregivers.
First International Symposium on Places of Death: An Agenda for the 21st Century
Authors: Mpinga Emmanuel Kabengele , Pennec Sophie , Gomes Barbara , Cohen Joachim , Higginson Irene J. , Wilson Donna , Rapin Charles-Henri
Published: April 2019

Proceedings of the First International Symposium on Places of Death: an Agenda for the 21st Century. Held in Sion, Switzerland, November 1 and 2, 2005, at the Institut Universitaire Kurt Bosch, with the support of Geneva University, WHO, and the Swiss Medical Academy.
Is Courage the Counterpoint of Demoralization?
Authors: Wein Simon
Published: April 2019

Objective

To consider the role courage plays in our ability to cope with threat and adversity, especially the role of courage in understanding demoralization and dignity.

Method

By exploring standard psychiatric texts and Aristotle's concept of courage and virtue. A review of Medline and PsyclNFO provided few relevant documents, reflecting the paucity of research on the concept of courage in psychiatry, palliative care, and psycho-oncology.

Results and conclusions

Courage is an important precursor to maintaining morale and therefore may play a critical causative role in demoralization. Courage is also intimately related to the concepts of self-esteem, free will, and personal values in life. The utility of the concept of courage is that it enables a response to a difficult circumstance. The main drawback of courage in a therapeutic sense is that it is often linked with cowardice, which has a pejorative connotation and is notoriously difficult to diagnose.
Pediatric Palliative Care: A Qualitative Study of Physicians’ Perspectives in a Tertiary Care University Hospital
Authors: St-Laurent-Gagnon Thérèse , Carnevale Franco A. , Duval Michel
Published: April 2019

The objective of this study was to assess the concept of palliative care for a group of physicians in a tertiary care pediatric university hospital. Grounded theory methodology was used. Data included 12 semi-structured interviews, field notes, research consent forms, research protocols, and articles published by the participants. Physicians involved in both research and clinical care of severely ill children were interviewed. Data analysis identified three principal themes. First, physicians limited their concept of palliative care to the relief of physical symptoms, equating palliative care with comfort care. Second, there was variation regarding the appropriate moment to introduce palliative care for children. Finally, many physicians were not comfortable using the term “palliative care”. Although this study was conducted in one Canadian centre, the results raise questions that should be examined in other settings. A vague concept of palliative care may delay the provision of palliative care to children.
Development and Validation of a Scale Assessing Spiritual Needs for Korean Patients with Cancer
Authors: Yong Jinsun , Kim Juhu , Han Sung-Suk (SR. Salecia) , Puchalski Christina M.
Published: April 2019

The purpose of this study was to develop a scale assessing the spiritual needs of Korean patients with cancer. For the scale development, qualitative interviews and theoretical analyses were conducted to extract measurable constructs within the Korean culture. As a result, 26 items were developed for the validation of a scale. The scale was administered to 257 cancer patients; the reliability and validity of the scale were examined using Cronbach's alpha and factor analysis, respectively. The reliability was 0.92. The results of factor analysis revealed five subconstructs: love and connection, hope and peace, meaning and purpose, relationship with God, and acceptance of dying. Given these subconstructs, suggestions are provided for future studies. Spirituality has been shown to be important in the lives of patients with chronic disease. Therefore, having a scale which adequately assesses patients’ spiritual needs is critical to determining how to address these needs in a clinical setting.
Family Responses to the Death of a Child: The Meaning of Memories
Authors: Davies Betty
Published: April 2019

Pediatric palliative care professionals often encounter questions from parents about how to handle the belongings of their deceased child. This study describes what 34 families did with their child's clothes, room, and mementos after a death from cancer. Further, the study presents a theoretic scheme deriving from a conceptual analysis of the interview data. This theoretic scheme hypothesizes that the deceased child's belongings may serve as memories with meanings, that these meanings may vary among family members, and that discrepant meanings may influence bereavement outcome within the family and its individual members. Areas requiring further research are identified, and implications of the findings for clinical practice are discussed.
Is There a Role for Dental Professionals within Hospice Programs?
Authors: Berkey Douglas B. , Ofstehage John C. , Crane Cheri A. , Malley Kevin J
Published: April 2019

A multidisciplinary approach to meet effectively the complex needs of the terminally ill patient and associated family members has been widely utilized within hospice programs. Although oral problems are prevalent and hospice patient perceived dental concerns are frequently significant, dental professionals have been generally excluded from hospice care teams. Efforts need to be made both by hospice staff and the dental profession to assess and meet more successfully the dental needs of the terminally ill patient in order to enhance his or her remaining quality of life.
Preparation of a Bulk Preservative Free Morphine Parenteral Solution
Authors: Dean Terry W.
Published: April 2019

This column provides reports that situate and synthesize current developments, issues, innovative clinical procedures, therapeutic methods and promising novel methods of delivery in the related fields of palliative care.
Front Line Dispatch
Authors: Ferris Frank D. , Kerr Ian G. , De Angelis Carlo , Sone Marcia , Hume Susan
Published: April 2019

Morphine and hydromorphone infusions of 6 or more (average 25.75) days in duration were used with increasing frequency (up to 7%) by our oncology inpatients. Eighty-six percent of the 135 inpatients we reviewed realized good pain control with dose rates up to 700 morphine-equivalent (ME) mg/h. Local toxicity occurred on only 10 occasions. Systemic side effects secondary to the infusion were reported 75 times and were generally readily reversed. Myoclonus was seen in 11% of our patients at dose rates as low as 60–90 ME mg/h. Adjuvant therapies were not used as frequently as might be warranted. We believe that narcotic infusions, particularly subcutaneous ones, are safe and effective. Further prospective trials are needed to clarify how they should be combined with other therapies to control cancer pain that is poorly responsive to narcotics, and to better understand the etiology and management of serious side effects.
Families in Supportive Care — Part II: Palliative Care at Home: A Viable Care Setting
Authors: Brown Pam , Davies Betty , Martens Nola
Published: April 2019

The growth of various palliative care Programs is continuing. The family unit is affected by the need for palliative care in one family member. It is critical, therefore, to know what models of palliative care are preferred by families who are experiencing the need for such services. Content analysis of in-depth interviews with eight families (24 members) indicated that families preferred palliative care at home over care in any institution. Five interrelated concepts explained this preference. The ability of families to realize their preference was dependent upon four factors. These concepts and factors are discussed, focusing on resultant implications for practice.
Determinants of Grief Resolution in Cancer Death
Authors: Yancey Donna , Greger Heidi A. , Coburn Patricia
Published: April 2019

The death of a loved one can be very difficult, and yet there is little information about how nurses can help someone through it. The purpose of this exploratory ex post facto study was to determine whether the circumstances of a cancer death influence the grief resolution of the survivor at one month after the death. The circumstances that were studied include: (1) the place of death, (2) the length of the cancer illness, (3) the perceived social support from family/ friends, (4) the perceived social support from nurses, (5) satisfaction with the care received by the loved one, and (6) the quality of death of the loved one. Data were gathered from 43 survivors (spouses, children, and parents) through questionnaires and an open-ended interview, The study findings provide a better understanding and knowledge of nursing interventions for the family/friend of the imminently terminal cancer patient.
Relational Messages of Control in Nurse-Patient Interactions with Terminally Ill Patients with AIDS and Cancer
Authors: Pepler Carolyn J. , Lynch Ann
Published: April 2019

When dying patients are young adults or have a contagious disease, nursing staff may feel acutely uncomfortable and the patients may become isolated and alone. Nurses who work in palliative care units (PCU) develop special interactive skills that are generally acknowledged but not clearly defined or understood. Admission of patients with Acquired Immune Deficiency Syndrome (AIDS) to the PCU was expected to provide a unique opportunity for study. The project was an analysis of nurse-patient verbal interactions during physical care for the purpose of understanding communication patterns during the longest usual block of uninterrupted time nurses spend with patients. Included were six terminally ill patients with AIDS in an acute medical unit and nine other patients of differing ages in the medical unit and PCU. Data were tape recordings of up to six hours with each patient, a total of 78 days of taping. These were transcribed and analyzed to examine the content of interactions and communication techniques for identification of themes. The major overall themes were control, well-being, humor, uncertainty, and routines. The process themes identified were validation, problem solving, and therapeutic interaction. A framework for analysis of the relational messages of control was developed and detailed analysis conducted. The most frequent behavior was that of nurses offering control. Nurses and patients took control with approximately the same frequency, and by far the least frequent situation was that of the patient offering control to the nurse. The complexities of dying with a disease such as AIDS have made the care of these patients extremely demanding for all concerned. This analysis will help to delineate the content and process of nurse-patient interaction which is basic to comprehensive care of all patients.
Can One Die Healed?
Authors: Crombez Jean-Charles , Dubreucq Jean-Luc
Published: April 2019

“Les morts, c'est comme la semence: on les met en terre, et après tout dépend du ciel.” *

Jean Rouaud, 1990
Hypodermoclysis (HDC) for Symptom Control Vs. the Edmonton Injector (EI)
Authors: Fainsinger Robin L. , Bruera Eduardo
Published: April 2019

Hypodermoclysis (HDC) is a well-known method of providing symptom control in terminally ill patients. In this article we make reference to two previous reports describing our use of HDC and a new method of subcutaneous narcotic delivery called the Edmonton Injector (El). The rationale for using HDC mainly for rehydration and the El when subcutaneous narcotics are needed is explored. The controversy surrounding the treatment of dehydration in the terminally ill is examined. Finally, the advantages on our palliative care unit of the convenience, increased flexibility, and cost and time saving of these two treatment methods are discussed.
Symptom Control in a Regional Cancer Centre: An Innovative Outpatient Approach
Authors: Farncombe Margaret L.
Published: April 2019

The number of patients per year diagnosed with cancer continues to increase dramatically; this growth is predicted to persist into the twenty-first century. Palliative care, working in con-junction with the family doctor, has shown that a significant and possibly cost-effective contribution to the care of these patients can be made through use of outpatient clinics and in-home service. The Ottawa Regional Cancer Centre initiated such a clinic in mid-1990; this report gives details of its first six months of operation and its first series of 25 patients. The provision of outpatient and home care services in most instances fulfilled the desires of both patient and family for a dignified and comfortable death in the patient's home.
Role of the Palliative Care Unit Pharmacist
Authors: Hanif Nina
Published: April 2019

As a member of the palliative care team, the pharmacist makes valuable contributions towards decision making regarding appropriate drug therapies. The most challenging aspect of being a palliative care pharmacist is to isolate the etiology of a symptom to facilitate optimum symptom management and suggest alternate routes and medications.
New Perspectives in the Treatment of Decubitus Ulcers
Authors: Guggisberg Elisabeth , Terumalai Kistnensamy , Carron Jean-Marie , Rapin Charles-Henri
Published: April 2019

Although the consequences of prolonged lying on a hard surface are as old as the human race, publications on this subject are scarce. This is due to the fact that a decubitus ulcer never occurs in isolation but is nearly always a complication of some other condition. The term “decubitus” was already used by Hildnaus in 1590 and is derived from the Latin word decumbere which means “lying down” (1). The most important fact to keep in mind is that pressure sores can be prevented. This is the reason why this article not only discusses the management of pressure sores but also the importance of preventive measures. The basis of effective treatment is early detection and an adequate knowledge of the fundamental pathological process. Only adequate preventive measures, careful examination of the lesions, and a thorough knowledge of the products used can avoid unnecessary suffering by patients.
Primary Care Providers’ Perceptions of Care
Authors: Keizer Mary C. , Kozak John-Francois , Scott John F.
Published: April 2019

The Regional Palliative Care Unit in Ottawa conducted a retrospective study to determine how satisfied patients and families were with the service the Unit offers. Forty-five primary care providers, bereaved from 6 to 12 months, completed the 64-item semistructured telephone interview in a mean time of 20 minutes. The 59 closed-ended questions rated satisfaction levels concerning various aspects of the palliative care service on a 5-point Likert scale. Five open-ended questions elicited family priorities and suggestions for improvement. The major finding was that care was perceived to be highly satisfactory. Unexpected outcomes of the study were the identification by family members of the criteria for a “good death” and families’ perceptions that the Unit offers the best quality of life and death even for those patients who resist admission to the hospice setting.
Trends in Hospital Utilization in AIDS Care 1987–1991: Implications for Palliative Care
Authors: Goldstone Irene L.
Published: April 2019

St. Paul's Hospital, Vancouver has the largest Canadian experience of the care of persons with HIV/AIDS. This article reviews St. Paul's experience during the period 1987–1991, with particular emphasis on issues in palliative AIDS care. These issues include the implications of prolonged palliative care at home, precipitous readmissions to hospital for terminal care, and long-stay terminal admissions. Aspects of treatment and social factors which have an impact on palliative AIDS care are also identified. The implications for program development in both community and institutional settings are discussed.
A Psychosocial Summary Flow Sheet: Facilitating the Coordination of Care, Enhancing the Quality of Care
Authors: Bunston Terry , Elliott Mary , Rapuch Sherry
Published: April 2019

To improve the continuity of care and to better coordinate psychosocial care, the Psychosocial Oncology Program at the Ontario Cancer Institute/Princess Margaret Hospital developed a psychosocial summary flow sheet. The objectives of the pilot project evaluation were: (a) to examine preparation to use the flow sheet prior to its implementation, (b) to gather information on how staff used the flow sheet, and (c) to determine how its design and implementation could be improved. The charts of all the patients on the units participating in the pilot project were examined and a questionnaire was sent to all staff involved with patient care on these units. The results of the evaluation indicated that the psychosocial summary flow sheet was perceived to be an asset to psychosocial care and could be implemented hospital-wide. Based on the evaluation, a number of changes were made in its design and a strategy for hospital-wide implementation was planned.
Metoclopramide in Anorexia Caused by Cancer-Associated Dyspepsia Syndrome (CADS)
Authors:   World Health Organization Demonstration Project, Nelson Kristine A. , Walsh T. Declan
Published: April 2019

Anorexia is a common problem in advanced cancer, part of the cancer anorexia-cachexia syndrome. Although the etiology is multifactorial, symptoms suggestive of gastroparesis are often present in patients with cancer anorexia. We have successfully used metoclopramide, a prokinetic agent, to stimulate appetite in advanced cancer and relieve other dyspeptic symptoms associated with anorexia.
Factors Associated with Length of Survival among 1081 Terminally Ill Cancer Patients
Authors: Allard Pierre , Dionne Albert , Potvin Diane
Published: April 2019

To improve their ability to estimate the survival of terminally ill cancer patients, palliative care physicians require accurate information on prognostic factors. The objective of this study was to assess the extent to which variables such as patient characteristics and primary tumor site affect the length of survival of terminally ill cancer patients. The study population consisted of 1081 cancer patients admitted for terminal care to a 15-bed palliative care unit from 1985 to 1991. Univariate Kaplan-Meier survival analysis and multivariate Cox regression analyses were used to examine the relationship between patient characteristics at admission and survival time. The factor most strongly associated with shorter survival was poor performance status; this strong relationship was not altered by taking into account sex and primary cancer site in the multivariate analysis. For patients who were bedridden at admission, the death rate was 5.5 times higher (95% confidence interval (CI) 3.4–9.0) than that for ambulatory patients during the first four days of stay and it was 2.8 times higher (95% CI 2.0–3.9) subsequently (up to 19 days). The other prognostic factors significantly but slightly associated with poorer survival in the univariate analysis were primary lung cancer, male sex, and living with a spouse. These findings indicate that performance status is the main prognostic factor for accurately estimating the survival time of terminally ill cancer patients.
Funeral Rituals following the Death of a Child in Taiwan
Authors: Gudmundsdóttir Maria , Martinson Paul V. , Martinson Ida M.
Published: April 2019

This study explores the practices of 25 Taiwanese families following the death of a child from cancer. Detailed description of the families’ Post-death practices was obtained through semi-structured interviews with at least one family member. Through content analysis of the data, 10 categories were identified. These were: caring for the body, funeral arrangements, mourning clothes, ashes, spirit tablets, child's belongings, child's room, visits to the grave or the temple, dreams, and talking about the dead child. The findings show that although the rituals performed following the death of a child are simpler than those traditionally performed for an adult, they are still an important part of the families’ lives during the post-death period.
Interviews with men with Prostate Cancer about their Self-Help Group Experience
Authors: Gray Ross E. , Fitch Margaret , Davis Christine , Phillips Catherine
Published: April 2019

This study reports on the results of semi-structured interviews with 12 men involved in prostate cancer self-help groups in three Canadian cities. Overall, participants reported their group involvement to be helpful, especially in terms of accessing information. Additional benefits included finding commonality with others, being able to talk about difficult issues, being productive and accomplishing tasks, advocating to make a difference, and engaging with family members around health issues. We conclude that the recent growth of self-help groups speaks to the challenge inherent for men in dealing with prostate cancer and counteracts tendencies to minimize the suffering which they experience.