bluuebunny/crossref_metadata_2025 huggingface dataset:
Hospital Referrals to a Hospice: Timing of Referrals, Referrers’ Expectations, and the Nature of Referral Information
Authors: Massarotto Alicia , Carter Helen , Macleod Rod , Donaldson Natalie
Published: April 2019

Hospital referrals to Mary Potter Hospice were reviewed prior to the implementation of a new hospital palliative care support service. The hospital palliative care service aims to improve the communication between health professionals in the acute hospital and hospice, and to advise the hospital staff on its management of terminally ill patients. The purpose of this review was to provide baseline information that would assist the hospice with the planning and future evaluation of the new service. Information included the timing of the referrals, the type of referral information provided by hospital doctors, and their expectations of hospice care. One fifth of patients were referred near to death. While medical information was nearly always provided on referral, information on the psychological, spiritual and social dimensions of care was often absent. A third of hospital doctors expressed their expectation of the hospice as “to take over” the patient's care. This suggests the hospital palliative care support service should encourage health professionals to take a more active role in caring for dying patients. The findings are discussed in relation to the goals of the new hospital palliative care support service.
An Exercise Intervention for Advanced Cancer Patients Experiencing Fatigue: A Pilot Study
Authors: Porock Davina , Kristjanson Linda J. , Tinnelly Karen , Duke Trish , Blight Joanne
Published: April 2019

Fatigue is reported by advanced cancer patients to be their most prevalent and distressing symptom. Despite this, few interventions have been developed and tested to manage this debilitating symptom. This paper describes a pilot study undertaken to test the effects of a 28-day exercise intervention on levels of fatigue in advanced cancer patients. All participants were able to increase their activity levels with no increase in reported fatigue. Furthermore, a trend was noted in all patients toward increased quality of life scores and decreased anxiety scores, All participants described a sense of satisfaction in attaining increased activity levels. These preliminary pilot results suggest that patients who initially report the highest levels of fatigue may achieve the largest decrease in fatigue scores. These findings provide support for the suitability of this intervention for the palliative care population and justify the importance of further hypothesis testing.
Multiprofessional Palliative Care Education: Past Challenges, Future Issues
Authors: Koffman Jonathan
Published: April 2019

Historically, health and social care professionals have described their lack of competence and confidence in many aspects of palliative care, and have recognized the need for increased educational opportunities, where new skills can be acquired and existing knowledge consolidated. Redressing these omissions has led to the development and growth of educational programs. Many of these courses have been unidisciplinary, with concomitant limitations. The adoption of a generalist approach to education has been suggested, to facilitate greater collaboration among professions and to ensure better use of resources. Course participants have greeted multiprofessional programs with enthusiasm. However, evidence of their effectiveness and impact on the delivery of palliative care to patients and their carers, although positive, remains scant. As the phenomenon of demographic aging continues, the growth of multiprofessional educational opportunities will amplify the need to scrutinize their content more closely.
A Terminal Care Support Team in a Paris University Hospital: Care Providers’ Views
Authors: Salomon Laurence , Belouet Caroline , Vinant-Binam Pascale , Sicard Didier , Vidal-Trécan Gwenaëlle
Published: April 2019

Objectives

Following three years of a terminal care support team (TCST) activity: (a) to describe current management of terminally ill patients from the care providers’ viewpoint, (b) to compare the views of head nurses and physicians about this management, and (c) to identify ways of further improving palliative care.

Methods

A questionnaire was sent to all head nurses and physicians of the hospital.

Results

Care-providers consider that the TCST provides therapeutic counselling, training, and psychological help to patients, staff, and families. Few care providers were reluctant to request advice in the management of their patients. Most were satisfied with the partnership with the TCST and deemed it effective. Further improvements suggested for terminally ill patient care included greater assistance from the TCST, especially for nurses, and expanding TCST activities to outpatient management and home care programs.

Conclusion

Health care providers consider the implementation of the TCST to have been successful.
Receiving Bad News: Experiences of Family Members
Authors: Friedrichsen Maria J. , Strang Peter M. , Carlsson Maria E.
Published: April 2019

Little is known about how next-of-kin experience receiving bad news. The aim of this study was to explore the experiences of family members when receiving information about ending tumour treatment, with a focus on their role in this context.

Methods

Semi-structured interviews were performed and analyzed using a qualitative phenomenographic method.

Results

Twenty family members of patients with incurable progressive cancer admitted to hospital-based home care were included in the study. Data showed that family members want to protect, represent, or act on behalf of the patient. Some described themselves as assuming prominent roles: the demander-of-truth role, the secret-keeper role, and the controller role. Others assumed more passive roles: the surrendering role, the considerate listener role, and the excluded outsider role.

Conclusion

This study has revealed possible explanations as to why family members are dissatisfied with information. The results of this study may help doctors in clinical practice recognize the different types of behaviour family members exhibit when receiving bad news.
Beyond Denial and Despair: ALS and Our Heroic Potential for Hope
Authors: Centers Linda C.
Published: April 2019

Because the patient with amyotrophic lateral sclerosis (ALS) knows at the outset that he or she is facing an incurable and always fatal illness, the experience of hope may be different in the ALS community from that in the general palliative care community. Although the word “hope” is frequently and passionately used by both patients and professionals in the ALS community, to date there has been little published on the subject. Hopelessness and despair are a very real part of the ALS experience. But true hope, of a kind more powerful than mere physical survival, can also be part of the ALS journey. What is this “hope” the professional is expected to engender and the patient is encouraged not to lose? How can professionals help the ALS patient find hope and meaning? This article is an exploration of hope by someone who has experienced ALS, first as an occupational therapist, then as the daughter and caregiver of an ALS patient. Based on literature review and personal experience, factors leading to both hope and hopelessness are explored. Finally, the author offers several strategies that palliative care professionals can use to help ALS patients find hope.
Learning from Sir William Osler about the Teaching of Palliative Care
Authors: Macleod Rod
Published: April 2019

The publication by Michael Bliss of his authoritative and illuminating text William Osler: a Life in Medicine (1) provides a wonderful opportunity to reflect on the life of a great man who had a major influence on medical undergraduate teaching and medical practice. His approach to the care of both patients and colleagues was warm and encouraging. He demonstrated a humanistic approach to medicine that was reflected in his clinical practice, his teaching, and his writings, and that remains influential today. He had the ability to blend wide knowledge with high ideals and common sense to influence the ways in which the doctor-patient relationship developed. Drawing on passages from the biography of William Osler, and linking his practice with the work of Donald Schön and the development of reflective practice, this paper identifies elements of our roles as clinicians and teachers that could be enhanced by further examination of the life of a man who has been described as the “greatest doctor in the world” (1, p.480); a physician “whose work lies on the confines of the shadowland” (1, p.291).
Impact of a Hospital Palliative Care Service: Perspective of the Hospital Staff
Authors: Carter Helen , Mckinlay Eileen , Scott Ian , Wise Deborah , Macleod Rod
Published: April 2019

The first New Zealand hospital palliative care support service was established in 1985. Different service models have now been adopted by various major hospitals. In 1998, a palliative care service, funded by Mary Potter Hospice, was piloted at Wellington Public Hospital. Twelve months post-implementation, the hospital staff's views of the service were evaluated. It was found that referrals to palliative care from hospital specialities outside the Cancer Centre increased. While most doctors, nurses and social workers strongly agreed or agreed that the service positively influenced patients’ care and effectively addressed their symptom management needs, spiritual needs were less often met. Over 90 percent of each discipline strongly agreed or agreed that the service had assisted them in caring for patients, but, only about a half agreed that useful discharge planning advice and staff support was provided. Significant differences in responses were found between different disciplines and specialities. One fifth of the staff identified palliative care education needs. Recommendations are made concerning the development of a future hospital palliative care service.
The Impact on Families of a Children's Hospice Program
Authors: Davies Betty , Collins John B. , Steele Rose , Pipke Ingrid , Cook Karen
Published: April 2019

Pediatric hospice is a relatively new development in the field of hospice care. This article reports on an evaluation project that examined the effect of the Canuck Place children's hospice program on the families it served during its first two and a half years of operation. Using the principles of participatory action research, data were collected from individual interviews, focus groups, and mail-out surveys of families who used the program. Sixteen categories of hospice program effect were found to summarize how families regarded, used, and assessed their experiences. Families overwhelmingly endorsed the Canuck Place program. They also provided helpful suggestions for improvement and growth, particularly during the program's formative years. Recommendations are made with a view to promoting and solidifying the ongoing success of the Canuck Place program, as well as of children's hospice programs in general.
Evaluation of a Nystatin-Containing Mouth Rinse for Terminally Ill Patients in Palliative Care
Authors: Butticaz Gaël , Zulian Gilbert B. , Preumont Marie , Budtz-Jørgensen Ejvind
Published: April 2019

Purpose

To evaluate the antifungal effect of a nystatin mouth rinse to control oral candidiasis of elderly patients in palliative care.

Materials and Methods

52 cancer patients (mean age: 83 years) hospitalized in a long term care facility for chronically ill geriatric patients. Mouth rinsing with 15 ml nystatin solution (4,000 Ul/ml) was carried out for one minute, six times daily, over two weeks. Yeasts were collected and seeded on CHROMagar. Growth was read qualitatively and quantitatively after two days’ incubation at 37°C.

Results

Clinical signs of oral candidiasis were observed in 31% of cases. High yeast scores were observed in 58% of the residents. There was an association between signs of oral candidiasis and high yeast scores (p<0.001). Treatment for two weeks caused no clinical changes nor reduced yeast scores.

Conclusions

No clinical or antifungal effect from the nystatin suspension suggests that the concentration of nystatin in the mouth rinse was too low. A more effective procedure should be employed for antifungal treatment of terminally ill patients. Appropriate antimicrobial solutions with lubricating activity should be developed and applied to prevent oral diseases.
Factors which Influence Coping: Home-based Family Caregiving of Persons with Advanced Cancer
Authors: Strang Vicki R. , Koop Priscilla M.
Published: April 2019

The findings from a qualitative study of bow caregivers coped while they cared for a dying family member at home are presented. Fifteen family caregivers were interviewed twice following The death of their family member. Although it was not one of the original objectives of the research, coping emerged as a category needing further analysis. There were factors that either facilitated or interfered with caregiver coping. Those factors that facilitated their coping included characteristics of the caregivers themselves; contributions made by the dying person; and supportive networks, both formal and informal, available to the caregivers. Interfering factors related to caregiver experiences with informal and formal systems. From the more distant Perspective of post-death reflections, the caregivers Provided insight into how their coping was grounded in the meaning associated with their experiences.
Neuropathic Pain in Patients with Cancer
Authors: Manfredi Paolo L. , Gonzales Gilbert R. , Sady Ribeiro , Chandler Sonja , Payne Richard
Published: April 2019

We provide a detailed description of painful neural lesions in hospitalized patients with cancer. A total of 187 consecutive patients with cancer and pain, referred to the pain service of a cancer hospital, were evaluated within 24 hours by two neurologists and followed until discharge or death. Based on history, pain descriptors, physical examination, and radiological and electrophysiological studies, the pain was categorized as neuropathic in 103 patients. The most frequent sites of neurological injury were nerve roots, spinal cord and cauda equina, brachial and lumbosacral plexus, and peripheral nerves. There were no patients with pain caused by injury to the brain. In 93 of these patients, the pain was caused by ongoing neural injury, while, in 10 patients, the neural injury was old and stable. Within these two groups of patients with neuropathic pain, analgesic treatments differed. Prospective studies may determine if categorizing painful neurological injuries in cancer patients based on inferred pathophysiology is useful when deciding among different treatment options.
What is a Good Death? Minority and Non-minority Perspectives
Authors: Tong Elizabeth , Mcgraw Sarah A. , Dobihal Edward , Baggish Rosemary , Cherlin Emily , Bradley Elizabeth H.
Published: April 2019

While much attention has been directed at improving the quality of care at the end of life, few studies have examined what determines a good death in different individuals. We sought to identify common domains that characterize a good death in a diverse range of community-dwelling individuals, and to describe differences that might exist between minority and non-minority community-dwelling individuals’ views. Using data from 13 focus groups, we identified 10 domains that characterize the quality of the death experience: 1) physical comfort, 2) burdens on family, 3) location and environment, 4) presence of others, 5) concerns regarding prolongation of life, 6) communication, 7) completion and emotional health, 8) spiritual care, 9) cultural concerns, 10) individualization. Differences in minority compared to non-minority views were apparent within the domains of spiritual concerns, cultural concerns, and individualization. The findings may help in efforts to encourage more culturally sensitive and humane end-of-life care for both minority and non-minority individuals.
Breaking Bad News: Impact of a Continuing Medical Education Workshop
Authors: Ladouceur Roger , Goulet Franqois , Gagnon Robert , Boulé Richard , Girard Gilles , Jacques André , Frenette Jacques , Carrier Robert , Lalonde Viateur , Bélisle Claude
Published: April 2019

Objective

To evaluate the impact of an interactive continuing medical education workshop designed to help physicians in breaking bad news to their patients.

Methodology

Analysis of post-workshop questionnaires from 539 physicians assessing the retention of the key concepts and the perception of the potential impact of the workshop on their practice immediately after the workshop and six months later.

Results

The most significant concepts retained by the respondents are: the need to take into consideration the whole patient (42.7% post-workshop and 45.6% of follow-up responses), the need to be prepared for the consultation (11.6% and 15%), the importance of better guiding the interview (18.8% and 13.6%), and the value of taking more time during the consultation (5.8% and 8.3%). Analysis of paired responses on the post-workshop and the follow-up questionnaires shows that 35% of the concepts retained are identical.

Conclusion

The majority of physicians retained the key concepts, both immediately following the workshop and in the longer term.
French Physicians’ Attitudes toward Legalisation of Euthanasia and the Ambiguous Relationship between Euthanasia and Palliative Care
Authors: Peretti-Watel Patrick , Bendiane Marc K. , Galinier Anne , Favre Roger , Lapiana Jean-Marc , Pégliasco Hervé , Moatti Jean-Paul
Published: April 2019

In 1999, the French Parliament established a “right to palliative care”, which reactivated public debate about euthanasia. In order to investigate jointly physicians’ attitude toward palliative care and euthanasia, we conducted a cross-sectional survey of a national sample of French GPs, oncologists, and neurologists. Overall, 917 physicians participated in the survey. Significant proportions of respondents, especially among GPs and neurologists, considered that palliative sedation and withdrawing life-sustaining treatments (WLST) were euthanasia. Multivariate analysis showed that the physicians who had special medical training in palliative care, and those who distinguish palliative sedation and WLST from euthanasia were more likely to oppose legalisation of euthanasia. Thus, French physicians’ attitude to the legalisation of euthanasia is strongly influenced by whether or not they distinguish palliative care from euthanasia. Improved palliative care requires better training of the entire medical profession, and clearer guidelines about which end-of-life care practices are legally and ethically acceptable.
Factors Associated with Caregiver Burden among Caregivers of Terminally Ill Patients with Cancer
Authors: Goldstein Nathan E. , Concato John , Fried Terri R. , Kasl Stanislav V. , Johnson-Hurzeler Rosemary , Bradley Elizabeth H.
Published: April 2019

Objective

To identify factors associated with caregiver burden among those caring for terminally ill patients with cancer.

Design

Cross-sectional study of interviews with primary caregivers (n=206) of consecutive patients with cancer enrolled in the largest hospice in Connecticut.

Methods

Data were collected on the caregivers’ sociodemographic characteristics, social network index, and number of restrictions in their own activities due to their caregiving role. The outcome was a nine-item questionnaire adapted from the Zarit Burden Inventory.

Results

The highest burden was reported among caregivers with more limited social networks (OR 1.38, CI 1.02–1.87), more restrictions in their daily activities (OR 1.35, CI 1.13–1.61), and who were younger (OR 1.46, CI 1.10–1.93).

Conclusions

Variations exist in the intensity of caregiver burden based on subjective experiences and social support, rather than on the amount of assistance provided. Clinicians should consider factors such as these when targeting caregivers for interventions to alleviate burden.
Family Responses to Declining Intake and Weight Loss in a Terminally Ill Relative. Part 1: Fighting Back
Authors: McClement Susan E. , Degner Lesley F. , Harlos Mike
Published: April 2019

We recently completed a grounded theory study examining nutritional care experiences in advanced cancer from the perspective of patients (n=13), families (n=23), and health care providers (n=11) (1). That work generated important information about adult family members’ perceptions and behaviour regarding the nutritional care their terminally ill adult relative received while hospitalized on an inpatient palliative care unit. An overview of the inductively derived model that emerged from that work has been reported elsewhere (2). This article provides a more detailed description of one of the major sub-processes of the model regarding family member responses to declining oral intake and weight loss in a terminally ill relative—the sub-process of “fighting back: it's best to eat.” The strategies family members use when fighting back, and the consequences of these strategies for patients, family members, and health care providers are reported. Implications for practice and research are provided.
Is Physician-Assisted Death Only for Developed Countries? Latin America as a Case Study
Authors: Luna Florencia , Van Delden Johannes Jm
Published: April 2019

The achievements of modern medicine are manifold and impressive. However, there is a broad recognition of the fact that continuing medical treatment is not always beneficial to the patient, nor is it always what the patient wants. This has led to a debate about the way physicians may or may not be involved in the end of life of patients. Could there be a justification for the active ending of a patient's life? This debate has a global character. In this article we will explore this debate for developing countries; we will focus on physician-assisted death (PAD) in Latin American countries. At stake is the moral relevance of differences, not the moral justification of PAD per se. We argue that arguments for PAD apply equally in affluent and in developing countries. Some of the counterarguments, however, would seem to hold more in developing countries than in affluent countries. Yet, under certain conditions, a Policy tolerating PAD would be as acceptable in developing countries as in developed countries.
Dignity at the End of Our Days: Personal, Familial, and Cultural Location
Authors: McDonald Michael
Published: April 2019

The desire to be treated with dignity, particularly at the end of one's life, is a fairly universal preference found in most cultures. Such treatment requires positive actions of respect in the behaviour of others toward the dying and the dead. It also involves negative actions, particularly refraining from doing “dignatory harms” to the dead and the dying. Yet it is not always easy for clinicians and researchers who deal with the dying and dead to decide on appropriate action or inaction. I suggest that such decision making can be helped by locating the dying person along three dimensions: the personal, the familial, and the cultural. These elements are interrelated in complex ways that need to be unpacked in context. Thus, one person may locate herself within a familial context while a sibling may locate himself against that context. While locating individuals along the three dimensions suggested does not “solve” ethical problems, it should help clinicians in understanding and dealing more compassionately with the dead, the dying, their families, and their communities.
The Demoralization Scale: A Report of its Development and Preliminary Validation
Authors: Kissane David W. , Wein Simon , Love Anthony , Lee Xiu Qing , Kee Pei Lee , Clarke David M.
Published: April 2019

The development and elaboration of a conceptualization of existential distress in patients with advanced disease is crucial in order to optimize our clinical response within palliative medicine. Demoralization is one expression of existential distress. Its empirical study will be greatly enhanced by a self-report measure that captures its dimensions and intensity. We report here on the development and testing of the Demoralization Scale in 100 patients with cancer. Factor analysis identified five relatively distinct dimensions: loss of meaning, dysphoria, disheartenment, helplessness, and sense of failure. These factors show high internal reliability, and convergent validity with the McGill Quality of Life Scale, Patient Health Questionnaire, Beck Depression Inventory, Beck Hopelessness Scale, Hunter Opinions and Personal Expectations Scale, and the Schedule of Attitudes toward Hastened Death. Its divergent validity is demonstrated through the differentiation of a subgroup of patients with high demoralization who do not meet DSM-IV categorization for a diagnosis of major depression. Confirmatory validation is needed for the scale to be used as a measure of change in interventions designed to treat demoralization.
Educational Needs of Palliative Care Nurses in Quebec
Authors: Fillion Use , Fortier Martine , Goupil Richard L.
Published: April 2019

Education appears to be a useful strategy for improving quality of care and work-related stress management. The present study assesses the educational needs of palliative care nurses working in acute care hospitals (n=88) and CLSCs (Centre Local de Services Communautaires, home-based, n=109) of the larger Quebec City area. It also describes relationships between educational needs, psychological distress, and self-efficacy. Nurses were surveyed and compared on training needs, preferred learning format, as well as barriers and factors facilitating attendance to workshops. Similar educational needs were observed in both work settings. Crisis, stress, and emotion management were rated as the most useful topics, followed by nonpharmacological ways to manage pain. Preferred educational formats were lectures and group discussions. Attending free training sessions during work hours was described as the best way to promote participation. Educational needs were positively related to psychological distress, and negatively related to perceived self-efficacy in providing good palliative care.
Reaching Common Ground: A Patient-Family-Based Conceptual Framework of Quality EOL Care
Authors: Howell Doris , Brazil Kevin
Published: April 2019

Improvement in the quality of end-of-life (EOL) care is a priority health care issue since serious deficiencies in quality of care have been reported across care settings. Increasing pressure is now focused on Canadian health care organizations to be accountable for the quality of palliative and EOL care delivered. Numerous domains of quality EOL care upon which to create accountability frameworks are now published, with some derived from the patient/family perspective. There is a need to reach common ground on the domains of quality EOL care valued by patients and families in order to develop consistent performance measures and set priorities for health care improvement. This paper describes a meta-synthesis study to develop a common conceptual framework of quality EOL care integrating attributes of quality valued by patients and their families.
Strategies used by Families to Navigate Uncharted Territory when a Child is Dying
Authors: Steele Rose
Published: April 2019

The eight families in this grounded theory study moved through a process of navigating uncharted territory as they lived with a child who was tying from a neurodegenerative, life-threatening illness. The process was characterized by four dimensions: entering unfamiliar territory, shifting priorities, creating meaning, and holding the fort. Within these dimensions, parents used strategies such as seeking and sharing information; going into slow motion and focusing on the child; taking one day at a time and reframing the experience; and living by the clock and Promoting the child's health, to manage the physical, cognitive, and emotional work arising from the situation. The focus of this paper is on the strategies that families used. Suggestions for practice and research are offered to assist health care professionals in providing optimal care to these families.
Physicians’ Attitude and Practices in Sickle Cell Disease Pain Management
Authors: Labbé Elise , Herbert Donald , Haynes Johnson
Published: April 2019

Many physicians believe that patients with sickle cell disease (SCD) are more likely to become addicted to pain medication than are other patient populations. This study hypothesizes that physicians’ attitudes towards addiction in patients with SCD affects pain management practices. The Physician Attitudes Survey was sent to 286 physicians at seven National Institutes of Health-funded university-based comprehensive sickle cell centres. The survey assessed demographic information; and physician's attitudes toward and knowledge of pain, pain treatment, and drug addiction and abuse. Significant Pearson product-moment correlations were found between attitudes towards pain and beliefs regarding addiction to prescribed opioids. Physicians reported varied pain management strategies, however, many believe that attitudes toward addiction and to patients in pain crises may result in undertreatment of pain. These results indicate that physicians might benefit from additional education regarding sickle cell disease, addiction to pain medication, the pharmacology of opioids, and the assessment and treatment of pain.
Participants’ Experiences of a Support Group Intervention for Family Members during Ongoing Palliative Home Care
Authors: Milberg Anna , Rydstrand Kristina , Helander Lena , Friedrichsen Maria
Published: April 2019

The aim of this study was to describe family members’ experiences of participation in a support group intervention during ongoing palliative home care. Four taped-recorded focus group interviews were conducted (in total, 13 persons) and a questionnaire was completed by 19 of 22 possible family members. The participants experienced increased perception of support and knowledge, and would recommend that a person in a similar situation join a support group. Categories that emerged in the qualitative content analysis concerned “reasons for support group participation”, “group composition contributed to group cohesion”, “experience and sensitivity of group leader was a catalyst”, “meaningful dialogue helped to solve everyday problems”, “sense of cohesion increased effectiveness of the group”, and “group sessions and post-session reflection increased perception of inner strength”. Support groups for family members seem to be a valuable contribution during ongoing palliative home care. The findings are discussed in relation to recruitment into and ending of support groups.
The Role of Antibiotics in the Management of Infection-Related Symptoms in Advanced Cancer Patients
Authors: Mirhosseini Mehrnoush , Oneschuk Doreen , Hunter Brad , Hanson John , Quan Hue , Amigo Pablo
Published: April 2019

We prospectively evaluated the effect of antibiotic treatment on infection-related symptoms in patients with advanced cancer, in addition to assessing infection characteristics. Methods: A questionnaire was completed for enrolled patients using a personal digital assistant. Pre-antibiotic and post-antibiotic treatment Edmonton Symptom Assessment Scale (ESAS) scores were evaluated. Patient and the patient's physician identified infection-related symptoms experienced by the patient, which were documented under the “other” category on the ESAS. Pre-antibiotic and post-antibiotic scores of the patient and physician for the identified infection-related symptoms were evaluated. Results: Twenty-six patients on a tertiary palliative care unit with 31 episodes of infection were included for analysis. Patients’ pre- and post-antibiotic ESAS scores revealed a small improvement in all variables except anxiety. Patient assessment of symptoms related to infection showed a small improvement in all symptoms, with dsyuria being statistically significant. Physician assessment revealed a slight improvement for all the symptoms, although only cough was statistically significant. A general comparative physician assessment of patient outcome following antibiotic treatment suggested symptom improvement in 48.4% of patients. However, 50% of patients died within a week of antibiotic discontinuation. Conclusions: Antibiotic treatment appears to offer a mild improvement in infection-related symptoms. Patients reported the greatest improvement in dysuria, and physicians, in cough. Despite this symptomatic improvement, one quarter of the patients died within one week of antibiotic administration. Further comparative studies to evaluate symptomatic benefit, patient burden, and cost/benefit of antibiotic therapy in the treatment of infections in advanced cancer patients are required.
Predicting Family Caregiver Psychosocial Functioning in Palliative Care
Authors: Hudson Peter L. , Hayman-White Karla , Aranda Sanchia , Kristjanson Linda J.
Published: April 2019

Background

Health professionals are expected to support family caregivers of patients requiring palliative care. However, there is a dearth of empirical evidence to help clinicians identify caregivers who might be at risk of poor psychosocial functioning.

Purpose

This secondary analysis of baseline data from a larger study sought to determine if it was possible to predict the psychosocial functioning of family caregivers who were supporting a relative with advanced incurable cancer.

Method

Data from 35 primary family caregivers obtained at the start of home-based palliative care services and five weeks later was used in the analysis. Instruments to measure caregiver preparedness, competence, mastery, social support, anxiety, and self-efficacy were used.

Results

Cluster and logistic analyses revealed that self-reported “anxiety” and “competence” subscale total scores at time of commencement of home-based palliative care services were associated with caregivers at risk of lower levels of psychosocial functioning five weeks later.

Conclusions

This study suggests that it may be possible to identify family caregivers who are at risk for poorer psychosocial functioning. However, replication in a larger sample is required before this screening approach can be recommended for clinical use.
Variances in Perceptions of Interdisciplinary Collaboration by Hospice Staff
Authors: Oliver Debra Parker , Wittenberg-Lyles Elaine M. , Day Michele
Published: April 2019

The purpose of this descriptive project is to use the Modified Index of Interdisciplinary Collaboration (MIIC) to assess the perceptions of collaboration of 95 staff from all disciplines on five different hospice teams. Specifically, the research questions for the project are: 1) Are there variances in perceptions of collaboration between hospice programs? 2) Are there variances in perceptions of collaboration between and within hospice programs by staff in different disciplines? Significant variances were found in the perceptions of interdisciplinary collaboration between hospice teams. There were no significant differences found between hospice providers of different disciplines. The study concludes that measurement of collaboration is important given the emphasis in hospice on collaboration, and that the MIIC is one tool that can be used for that purpose.
Self-Perceived Burden to Others: Patient and Family Caregiver Correlates
Authors: Mcpherson Christine J. , Wilson Keith G. , Lobchuk Michelle M. , Brajtman Susan
Published: April 2019

Aims

To provide further evidence about the prevalence and correlates of the sense of “self-perceived burden” (SPB) to others, and to examine its association with caregiver reports of burden.

Methods

The participants were 65 patients with advanced cancer and their family caregivers. Patients completed measures of SPB and family members completed a caregiver burden scale.

Results

SPB was experienced at minimal to mild levels by 35% of patients, and at moderate to extreme levels by another 28%. It was correlated with some physical symptoms, but more frequently with psychological symptoms. The family members of patients who reported that SPB was a significant problem had higher scores on the caregiver burden scale than family members of other patients (p=0.048), although the overall correlation was modest.

Conclusions

SPB is a common and distressing concern for many patients receiving palliative care and is associated with a number of other distressing concerns.
So No One Dies Alone: A Study of Hospice Volunteering with Rural Seniors
Authors: Mckee Margaret , Kelley Mary Lou , Guirguis-Younger Manal
Published: April 2019

This paper summarizes the results of a qualitative study of hospice volunteering in the rural communities of northwestern Ontario. In this region, there are 13 independent and active hospice volunteer programs serving communities ranging in population from 1,000 to 15,000. The 13 volunteer coordinators in these communities participated in a phone interview in which they described the role of hospice volunteers in their community and the kinds of clients they serve. The results indicate that the hospice volunteers in this rural region spend a large part of their time visiting medically frail and lonely seniors who are at risk of dying alone or without adequate care and companionship at the end of life. Long-term visiting to build relationships of trust and genuine caring are considered the ideal in these communities. Implications for end-of-life care for rural seniors are discussed.
Place, Age, and Mode of Death of Infants and Children with Hypoplastic Left Heart Syndrome: Implications for Medical Counselling, Psychological Counselling, and Palliative Care
Authors: Cantwell-Bartl Annie M. , Tibballs James
Published: April 2019

A review of outcomes of hypoplastic left heart syndrome at a pediatric hospital 1983–2004 identified 154 deaths among 206 children (75%). Of 134 surgically treated, 82 (62%) died: 68 (83%) in intensive care, six (7%) in the operating theatre, three (4%) during transport from home, two (2%) on the cardiac ward, one (1 %) at home, one (1 %) in the emergency department, and one (1 %) elsewhere. Seventy died after stage one Norwood surgery (median age: 13 days), three died after second stage surgery (ages: 3, 4, and 20 months), two died after third stage surgery (ages: 1.2 and 3.5 years), two died after heart transplantation (ages: 4.6 and 15 years), and five died after non-Norwood surgery. All 72 infants treated without surgery died: 68 died at a median age 3 days; 57 (79%) in intensive care, three (4%) on the ward, and 12 (17%) elsewhere. Discussion involves strategies to support parents and staff at diagnosis, and before and after a child's death.
The Psychosocial Effects of Cancer-Related Lymphedema
Authors: Towers Anna , Carnevale Franco A. , Baker Mary Ellen
Published: April 2019

Life-long lymphedema is a common complication of cancer therapy. In this Canadian study, we adopted a phenomenological methodology to explore the experience of patients with cancer-related lymphedema, and their spouses. We conducted audio taped semistructured interviews with 11 patients and eight spouses, who were recruited through a university hospital-based lymphedema clinic and through local lymphedema therapists. We developed an analytical framework from the data themselves, and tentative hypotheses and thematic categories that represented shared case features. Participants expressed frustration because of lack of financial support from government and insurance companies, inadequate knowledge and perceived lack of interest on the part of physicians, and lack of awareness in society in general. This study suggests further investigation of the funding of lymphedema treatments, and of the effect of lymphedema on work, intimacy, and leisure activities. Our research findings will inform educational initiatives and cancer rehabilitation programs.
Research Priorities in Pediatric Palliative Care: A Delphi Study
Authors: Steele Rose , Bosma Harvey , Johnston Meaghen Fletcher , Cadell Susan , Davies Betty , Siden Hal , Straatman Lynn
Published: April 2019

Background

Pediatric palliative care is increasingly recognized to be a specialized type of care requiring specific skills and knowledge, yet, as found in several countries, there is little available research evidence on which to base care.

Objectives

The goal of the project was to achieve consensus among palliative care practitioners and researchers regarding the identification of pertinent lines of research.

Method

A Delphi technique was used with an interdisciplinary panel (n=14–16) of researchers and frontline clinicians in pediatric palliative care in Canada.

Results

Four priority research questions were identified: What matters most for patients and parents receiving pediatric palliative services? What are the bereavement needs of families in pediatric palliative care? What are the best practice standards in pain and symptom management? What are effective strategies to alleviate suffering at the end of life?

Conclusions

These identified priorities will provide guidance and direction for research efforts in Canada, and may prove useful in providing optimal care to patients and families in pediatric palliative care.
Facilitated Advance Care Planning: What is the Patient Experience?
Authors: Simon Jessica , Murray Alison , Raffin Shelley
Published: April 2019

There is little known about the patient experience of participating in facilitated advance care planning (ACP). We conducted a grounded theory study with facilitated ACP participants who had end-stage renal disease. A theoretical model “a positive thing: peace of mind” emerged. This model contained three major categories: a) witnessing illness in self and others; b) “I don't want to live like that”, a perception of poor quality of life associated with living with cognitive or physical impairments. These preexisting ideas interacted with c) the process, which contained the patient's experience of all of the interactions encountered in facilitated ACP. The relationship between the three categories left participants comfortable that they had addressed their concerns about living in a burdensome state for themselves or their families. The literature review supported prior illness experiences and self-perceived burden as important in advance decision making. The implications of these findings are discussed.
Research Issues in Palliative Care
Authors: Gotay Carolyn Cook
Published: April 2019

Despite the recent proliferation of hospice programs and related research, a number of basic issues remain. Firstly the populations “at risk” for hospice care have not been precisely delineated. Secondly, the impact of the structure of a given hospice program on outcome has been given insufficient attention. Thirdly, assessing the impact of hospice care on quality of life has presented challenges in both definition and measurement. Finally, data relating to the costs of hospice care are difficult to evaluate. It is recommended that palliative care research focus on these areas. In addition, hospice programs and research need to be sensitive to changes over time and to dissemination of principles of hospice care.
Palliative Care in Canada: The First Decade and Beyond
Authors: Ley Dorothy C.H.
Published: April 2019

The first decade of palliative care in Canada has witnessed a rapid increase in programs. Originally institutional, they are now becoming community oriented. The major issues in palliative care are education, planning, development of standards and evaluative procedures, funding, and certain ethical dilemmas. The need for a sound academic base for future development is stressed. The role of the Palliative Care Foundation, both current and future, is briefly described.
Does Care Exclude Cure in Palliative Care?
Authors: O'Connor John A. , Burge Fred I. , King Bernice , Epstein Joan
Published: April 2019

This article, on the basis of an extensive analysis of one case history, formulates a critical question about whether hospices / units are the best settings to deliver optimal palliative care. The case history device allows the authors to raise questions that are reflective of a much broader range of patient experiences. The viewpoint is adopted that the best way to increase the quality of life for persons who may die is by refusing to separate the concepts of care and cure. Also, informed patient choices must take precedence over the perspectives of either cure- or care-oriented professionals. Although palliative care developed many of its service goals in reaction to the care that the dying received in acute care facilities, its future requires that these earlier assumptions be examined. Readers are asked to consider the questions posed in this article as they relate to their own settings.
The Relationship between Theory and Measurement in Evaluations of Palliative Care Services
Authors: Degner Lesley F. , Henteleff Paul D. , Ringer Carol
Published: April 2019

Studies to determine the effectiveness of palliative care services have been limited by difficulties in measuring relevant dependent variables. While reliabilities of various measures have been reported for terminally ill populations, the broader issue of whether such measures are sensitive to the effects of palliative care services has not been addressed. Such assessments are essential if the relative efficacy of alternative models of palliative care (for example, inpatient facilities versus consultation teams) are to be determined. This pilot study used a specific theoretical framework, Brickman's models of helping and coping, to assess three measures in a pretest / post-test design with 29 patients admitted to an established palliative care unit. Results indicated that only one measure, the Symptom Distress Scale, was both reliable and sensitive to the effects of the service. The results suggested that evaluations of palliative care services may be influenced by the extent to which measures are empirical indicators of the model of helping used within the setting.
The Therapeutic Equivalence of Oral and Subcutaneous/Intramuscular Morphine Sulphate in Cancer Patients
Authors: Twycross Robert G.
Published: April 2019

Clinical use suggests that the oral-to-subcutaneous / intramuscular potency ratio for morphine sulphate when given regularly to cancer patients is of the order of 1:2 or 1:3. Published data indicate that the mean bioavailability after oral administration is 38%, ranging from 15% to 64%. Recent pharmacokinetic studies have highlighted the important contribution made by an active metabolite, morphine-6-glucuronide, to the total effect of morphine. This is several times more potent than morphine and, on chronic administration, is present in higher concentrations than morphine itself. The need for caution when prescribing morphine to patients with impaired renal function is stressed.
Palliative Care in Medical Education at McMaster University
Authors: Burge Fred I.
Published: April 2019

As professionals working within palliative care struggle to find their niche in the academic, administrative and service continuum of patient care, we have a growing desire to share what has been learned with students and colleagues. The opportunities for student physicians to learn the principles and practices of caring for the dying are few. The described curriculum content is dependent on the McMaster philosophy of medical education and the developmental level of the student physician. Areas included are: philosophy of palliative care, communication skills, symptom assessment and control, approach to ethical issues, decision making and interdisciplinary team function. The authors describe the university's current approach in its specific contribution to undergraduate and postgraduate medical education, the continuum throughout those years and an examination of recommendations for the future.