bluuebunny/crossref_metadata_2025 huggingface dataset:
Evaluation of Education in Palliative Care: Determining the Effects on Nurses’ Knowledge and Attitudes
Authors: McClement Susan E. , Care Dean , Dean Ruth , Cheang Mary
Published: April 2019

Our study was an evaluation of a pilot course in palliative nursing care designed to improve practising nurses’ knowledge regarding cancer pain management and attitudes toward care of the dying patient. The course involved 12 weeks (36 hours) of systematic classroom instruction for registered nurses, and a one-day observational experience on a designated palliative care unit. A total of 16 nurses participated in the study. A repeated measures design was used to evaluate the effectiveness of the course. Attitudes toward care of the dying patient and his/her family were also evaluated. Results showed that nurses’ attitudes improved significantly from Time 1 (first day of course) to Time 2 (last day of course) (p=0.0007), and that this improvement was maintained at Time 3 (three months later) (p=0.064). The observational experience on a palliative care unit held in conjunction with the course was reported to be helpful to students in consolidating theoretical instruction.
Palliative Pain Management: When Both Pain and Suffering Hurt
Authors: Strasser Florian , Walker Paul , Bruera Eduardo
Published: April 2019

Patients with advanced cancer frequently experience intractable pain without sufficient response to a conventional pharmacological approach. One reason for refractory pain at the end of life can be the bidirectional nature of pain and suffering. Three terminally ill patients were assessed using a multidimensional palliative pain concept, including sensory, affective, cognitive, and existential components. In these patients, resistant pain did not equal insufficient eradication of the nociceptive input, but also suffering. Unrelieved emotions, depressive or anxious symptoms, delirium, difficulties communicating, or chemical coping influenced the expression of pain, illuminating the phenomenon of somatization. Palliative pain treatment integrated analgesic treatments, psychological, rehabilitative, and existential interventions, in consideration of individual expectations and outcomes. With the disciplined assessment and alternative multidisciplinary palliative approach, the quality of life of three terminally ill cancer patients with intractable pain could be enhanced, and unnecessary interventions and escalation of medications avoided.
A Palliative Approach or Specialist Palliative Care? What Happens in Aged Care Facilities for Residents with a Noncancer Diagnosis?
Authors: Parker Deborah , Grbich Carol , Brown Margaret , Maddocks Ian , Willis Eileen , Roe Penny
Published: April 2019

This article presents results of the second stage of a research project which explored the palliative care needs of 69 residents with a noncancer diagnosis in South Australia. Extensive data were collected prospectively from case notes, and resident and staff interviews over a 10-week period. Residents were suffering multiple conditions and were highly dependent for activities of daily living. Most residents’ care was consistent with a palliative approach, with only three residents in the study referred to a specialist palliative care service. However, for some residents, pain and symptom management were not always adequate, and referral to a specialist palliative care service would have been appropriate. This research indicates that, with additional education, it could be possible to extend the principles and philosophy of palliative care by adopting a palliative care approach within aged care facilities.
Palliative Care Work, Between Death and Discharge
Authors: O'Connor Margaret , Peters Louise , Lee Susan , Webster Cecilia
Published: April 2019

This paper discusses a small study that was undertaken in a palliative care unit (PCU) to demonstrate reasons for the lengthy patient turnover time after the death of a patient. The study arose from a managerial challenge about the PCU's efficiency in comparison to other settings of care. While Palliative care services in Australia are loosely funded on a per diem rate, casemix funding models for inpatient services in other settings reward efficiency in terms of length of stay (1). The aim of the study was to undertake a post-death survey, from the nursing perspective, of activities and the time required to deliver follow-up care, as required, to the deceased patient and his/her family. Details of the post-death episode for all patients who died in the PCU over two time periods were collected using a newly designed tool. This paper does not argue for the incorporation of post-death nursing work as a measure of efficiency or quality; rather, it is a demonstration of the type of work and the time involved in carrying out post-death work. This nursing work is an essential but hidden and generally unacknowledged element of palliative care and, not surprisingly, there is a dearth of literature describing the role of the nurse in providing care of the family and others after the patient has died. This project has provided important information about the factors that Protract after-death care, and gives some insight into the role of the nurse after a death occurs in a PCU.
Withdrawal of Ventricular Assist Device Support
Authors: MacIver Jane , Ross Heather J.
Published: April 2019

Objective

Ventricular assist devices (VAD) are mechanical pumps implanted into patients with advanced heart failure who are at risk of imminent death. VADs are a treatment and not a cure, and mortality on device support remains high. Recognizing the dire nature of the decisions for patients and families and the associated high mortality rates, we actively included processes for device withdrawal as Part of our program mandate.

Methods

At Toronto General Hospital, from October 2001 to December 2004, 22 patients underwent implantation of a VAD. Seven patients died following device withdrawal.

Results

The average time spent on support prior to device withdrawal was seven days. In four of the seven cases, family members initiated discussions regarding device withdrawal. Family-initiated discussions were more likely to occur if patients were implanted electively, as a bridge to transplantation. Disagreements occurred between the ICU and the transplant teams regarding the timing of device withdrawal and responsibility for stopping the pump.

Discussion

Establishing a process for device withdrawal has been a key factor in the success of our VAD program. This process relies heavily on pre-implantation preparation, a strategy for resolving disagreements, and a process for withdrawing device support.
A Comparison of Psychosocial and Physical Functioning in Patients with Motor Neurone Disease and Metastatic Cancer
Authors: Clarke David M. , McLeod Janet E. , Smith Graeme C. , Trauer Tom , Kissane David W.
Published: April 2019

Although their disease processes and treatments are different, patients with motor neurone disease (MND) and those with late-stage cancer share a common situation—one in which the quality of life, rather than a cure, becomes the focus of care. We report here a comparison of 126 patients with MND and 125 with metastatic cancer on a range of physical and psychosocial measures. Compared to cancer patients, MND patients were younger, had greater social contacts, but were more physically impaired. Cancer patients had more pain and were on more medication (opioids, steroids, and analgesics). Although the Beck depression scores were similar in both groups, MND patients had significantly higher scores for demoralization, hopelessness, and suicidal ideation. Cancer patients, on the other hand, scored significantly higher on anhedonia. We suggest this difference in the quality of depression represents a difference in illness experience of the two groups and has relevance for the ways we treat depression in the medically ill.
Assessing the Effectiveness and Acceptability of Interprofessional Palliative Care Education
Authors: Koffman Jonathan , Higginson Irene J.
Published: April 2019

Interprofessional education in health care in general and palliative care has been the focus of increasing attention in recent years. However, there is still controversy about its outcomes and few courses have been evaluated. The aims of this evaluation were to explore (1) the career progression of former students who attended an interprofessional MSc in palliative care; (2) the activities former students were engaged in as a result of attending the course; and (3) the experience of attending an interprofessional postgraduate course in palliative care. Former students who attended the course between January 1998 and January 2004 were surveyed using a postal questionnaire. Of the 56 students who completed the course, 44 (79%) responded; 23 (52%) were doctors, 20 (45%) nurses, and one an occupational therapist. Career progression was significant for doctors (Z=-2.08, p=0.04) and for nurses (Z=-2.4, p=0.017). Thirty-nine (89%) former students believed this was due to attending the course. Former students described a wide range of clinical, research, and service development activities they were involved in as a result of attending the course. Qualitative data highlighted the benefits of attending an interprofessional course where the following themes became evident: lateral thinking, challenging misconceptions, enhancing teamwork opportunities, and professional networks and confidence. Funding should be made available to extend interprofessional education to a wide range of professionals who care for patients with advanced disease and their families.
Patient and Family Involvement in Hospice Interdisciplinary Teams
Authors: Oliver Debra Parker , Porock Davina , Demiris George , Courtney Karen
Published: April 2019

Hospice programs rely on interdisciplinary team (IDT) collaboration in the delivery of quality care at the end of life. The hospice philosophy advocates patient autonomy in decision making, and treatment of the patient and family as a unit of care. Including patients and families in IDT meetings regarding their care is a logical corollary of this philosophy. Hospice professionals in one Midwestern US state were interviewed by phone to determine the extent of patient and family involvement in their IDT meetings. A few programs had direct experience with patients and families attending IDT meetings, but attendance was not routine. Better communication was recognized as a potential benefit. The patient's frailty and the burdens of caregiving for the family were noted challenges to participation. Video-mediated communication is offered as a potential solution.
The Experience of Hope for Informal Caregivers of Palliative Patients
Authors: Holtslander Lorraine F. , Duggleby Wendy , Williams Allison M. , Wright Karen E.
Published: April 2019

This study explored the experience of hope for informal caregivers of palliative patients. Interviews were conducted with 10 caregivers living with and providing care to a palliative patient. The interview data were analyzed using grounded theory qualitative methods. “Eroding hope” was their main concern—a result of bad days, negative messages, and experiences with the health care system. The participants dealt with eroding hope by “hanging on to hope.” Hanging on to hope had four subprocesses: a) doing what you have to do, b) living in the moment, c) staying positive, and d) writing your own story. The support of friends, family, and health care professionals, and spiritually connecting with something bigger and stronger were subprocesses. These findings have application for informal caregivers providing palliative care at home, as a basis for assessment and interventions. Health care professionals need to recognize and value the experience of hope for the informal caregivers of palliative patients.
Lower Limb Lymphedema: Experiences and Perceptions of Cancer Patients in the Late Palliative Stage
Authors: Frid Marianne , Strang Peter , Friedrichsen Maria J. , Johansson Karin
Published: April 2019

Lower limb lymphedema (LLL) is a common but neglected problem in palliative cancer patients. No studies have focused on these patients’ experiences of lymphedema. The aims of this study were to explore patients’ experiences regarding LLL and how they manage to deal with this in the late palliative stage. Methods: Thirteen patients with cancer-related LLL were included to satisfy a maximum variation sampling strategy. Interviews were analyzed using a qualitative phenomenographic method. Results: LLL influenced the patients’ thoughts about the future. Body image was often strongly influenced. Interactions with other persons were perceived as both positive and negative, and a range of coping strategies were expressed. Conclusion: LLL can exert a considerable influence on the physical experiences and the psychosocial situation of cancer patients in palliative care. Areas in need of increased education, attention, and further research are highlighted.
The Last Word: Family Members’ Descriptions of End-of-Life Care in Long-Term Care Facilities
Authors: Vohra Julie Uma , Brazil Kevin , Szala-Meneok Karen
Published: April 2019

A postal survey was used to collect data from family members of deceased residents of six long-term care (LTC) facilities in order to explore end-of-life (EOL) care using the Family Perception of Care Scale. This article reports on the results of thematic analysis of family member comments provided while completing the survey. Family comments fell into two themes: 1) appreciation for care and 2) concerns with care. The appreciation for care theme included the following subthemes: psychosocial support, family care, and spiritual care. The concerns with care theme included the subthemes: physical care, staffing levels, staff knowledge, physician availability, communication, and physical environment. This study identified the need for improvement in EOL care skills among LTC staff and attending physicians. As such, there is a need to implement continuing education to address these issues.
Validation of the Korean Version of the McMaster Quality of Life Scale in Terminal Cancer Patients
Authors: Kim Kyeong Uoon , Yoon Seok-Jun , Lee Juneyoung , Ahn Hyeong-Sik , Park Hye-Ja , Lee Sang-Il , Jo Min-Woo
Published: April 2019

The purpose of this study was to develop and validate a Korean version of McMaster Quality of Life Scale (K-MQLS) suitable for evaluating clinical hospice and palliative care. The McMaster Quality of Life Scale (MQLS) is a brief and comprehensive scale that is used to assess cancer patients receiving palliative care due to poor physical condition. To further develop the K-MQLS, we followed rigorous international translation steps and performed validity, reliability, and sensitivity analyses. The results of our study show that the K-MQLS is an efficient tool in terms of its validity, reliability, and sensitivity for the measurement of the health-related quality of life during the palliative phase. This developed tool could be used in research or clinical settings to assess health-related quality of life in Korean palliative care patients.
Living in a World without Closure: Reality for Parents who have Experienced the Death of a Child
Authors: Woodgate Roberta Lynn
Published: April 2019

The death of a child has been described as being for parents one of the most traumatic of losses. Nevertheless, information about how parents experience transition through the death trajectory is lacking. This phenomenological study explored parents’ lived experienced of transitioning through the death of a child. Twenty-eight bereaved parents (17 mothers, 11 fathers) took part in retrospective, open-ended interviews. Findings showed that, regardless of the time, parents continued to live in a world without closure and, more importantly, did not want to experience closure in their transitioning. To parents, “closure” meant an end to their child in every sense of the word. Their experience of living in a world without closure was supported by four themes: “keeping the memories alive”, “being a good parent”, “being there at my child's death”, and “being there for me after my child dies”. Findings yield new insights into how parents live with the death of a child.
Determinants of Oregon Hospice Chaplains’ Views on Physician-Assisted Suicide
Authors: Goy Elizabeth R. , Carlson Bryant , Simopoulos Nicole , Jackson Ann , Ganzini Linda
Published: April 2019

Background

Although religiousness is a strong predictor of attitudes towards physician-assisted suicide (PAS), Oregon hospice chaplains express wide variation in their opposition to or support for legalized PAS. We explored factors associated with chaplains’ views on PAS.

Methods

A mailed survey to chaplains from 51 Oregon hospices.

Results

Fifty of 77 eligible hospice chaplains (65%) returned surveys. Views on PAS were associated with views on suicide in general. Moral and theological beliefs were the most important influences on views on PAS. Chaplains who were opposed to PAS believed that God alone may take life, that life is an absolute good, and that suffering has a divine purpose. Those who supported PAS placed emphasis on the importance of self-de-termination and sanctity of life as defined by quality of life.

Conclusions

Oregon hospice chaplains’ diverse views towards PAS are closely related to their views on suicide in general, and their personal and theological beliefs.
“Changing Lanes”: Facilitating the Transition from Curative to Palliative Care
Authors: Thompson Genevieve N. , Mcclement Susan E. , Daeninck Paul J.
Published: April 2019

Little empirical work has been conducted assessing the perspectives of nurses regarding the barriers, facilitators, and strategies associated with achieving quality patient care at the end of life. A grounded theory study was conducted examining nursing behaviours and social processes inherent in the provision of quality end-of-life care from the perspective of generalist nurses (n=10) working in an acute care setting. An inductively derived preliminary model, “creating a haven for safe passage”, was developed based on the findings from this study and has been published elsewhere (1). This article provides a detailed description of one of the subprocesses of the model regarding the transition from curative to palliative care—the subprocess of “facilitating and maintaining a lane change”. The various strategies which nurses used to effect a lane change, as well as the facilitators and barriers they encountered in this process, are presented. The consequences associated with both successful and unsuccessful lane changes are reported.
Vulnerability, Disability, and Palliative End-of-Life Care
Authors: Stienstra Deborah , Chochinov Harvey Max
Published: April 2019

Palliative care has paid exceedingly little attention to the needs of disabled people nearing the end of life. It is often assumed that these individuals, like all patients with little time left to live, arrive at palliative care with various needs and vulnerabilities that by and large, can be understood and accommodated within routine standards of practice. However, people with longstanding disabilities have lived with and continue to experience various forms of prejudice, bias, disenfranchisement, and devaluation. Each of these impose heightened vulnerability, requiring an honest, thoughtful, yet difficult revisiting of the standard model of palliative care. A proposed Vulnerability Model of Palliative Care attempts to incorporate the realities of life with disability and how a contextualized understanding of vulnerability can inform how we approach quality, compassionate palliative care for marginalized persons approaching death.
A Survey of PDA Use by Palliative Medicine Practitioners
Authors: Lau Francis , Yang Julia , Pereira José , Daeninck Paul , Aherne Michael
Published: April 2019

This paper describes the results of a Web survey on the use of personal digital assistants (PDAs) by physicians across Canada involved with the delivery of palliative medicine in different settings. Seventy-two physicians responded to the survey from April to July 2005. The survey revealed 58.3% of respondents currently use PDAs on a daily basis, mostly to organize their practice and to look up medical references. Some use their PDAs to store patient information and to access a central electronic patient record (EPR). In terms of potential PDA use in palliative medicine, six thematic areas are suggested: medical references, EPR, staying connected, personal productivity, clinical research, and issues/concerns. For implications, healthcare organizations should consider mobile technology as part of their information systems strategy. The feasibility of a portable EPR for palliative medicine should be explored, and an information-based approach can help advance palliative medicine research in Canada.
Participatory Research in Pediatric Palliative Care: Benefits and Challenges
Authors: Mongeau Suzanne , Champagne Manon , Liben Stephen
Published: April 2019

Participatory research is an approach wherein all parties concerned play an active role throughout the research process, from initial design to the interpretation and dissemination of results. This article reports on two participatory research projects evaluating a new in-home respite program for children requiring pediatric palliative care and their families. Some of the realities, benefits, and challenges resulting from a participatory approach to research in pediatric palliative care are described. The outcomes of these two studies highlight the conclusion that organizations, professionals, volunteers, and family members accompanying the dying benefit from a participatory research method that actively engages their involvement. This approach offers participants the opportunity to voice concerns as well as supports a sense of empowerment. From the researcher's point of view, a participatory process can serve to increase both the social relevancy and impact of the research.
Staff Stress, Work Satisfaction, and Death Attitudes on an Oncology Palliative Care Unit, and on a Medical and Radiation Oncology Inpatient Unit
Authors: Pierce Bruce , Dougherty Elizabeth , Panzarella Tony , Le Lisa W. , Rodin Gary , Zimmermann Camilla
Published: April 2019

Professional caregivers for cancer patients are at high risk for work-related stress, but it is not clear how this relates to exposure to death and dying, and to professional satisfaction. This study compares work-related stress and staff satisfaction on an academic acute palliative care unit (PCU) with that on a medical and radiation oncology inpatient unit (OIU) at the same cancer centre. PCU staff tended to report less work stress-particularly related to terminal care—than those on the OIU, and higher work satisfaction and team support. PCU staff were more likely to perceive their work experience as having “positively altered their attitude to death” (p=0.007). These results show that a supportive team environment can exist on an academic PCU and suggest that support currently offered to PCU staff in terms of caring for terminally ill patients should also be extended to those working in general oncology settings.
Transition towards End of Life in Palliative Care: An Exploration of its Meaning for Advanced Cancer Patients in Europe
Authors: Larkin Philip J. , De Casterlé Bernadette Dierckx , Schotsmans Paul
Published: April 2019

Transition as a concept in healthcare has been explored, but there is limited empirical work which considers transition in the context of palliative care, specifically from the patient perspective. This article reports findings from a qualitative study designed to explore transition experiences of 100 advanced cancer patients in six European countries. Data were analyzed using the ATLAS.ti program. Findings suggest that transition is a confusing time of mixed messages, poor communication, and uncertainty, but the physical environment of the hospice offers a place of ontological security from which to address this. Transition concepts fail to capture the palliative care experience fully. Transience, as an alternative concept, is reported, although further research is needed to explore this. In clinical practice, the value given to hospice by patients suggests that clinicians must carefully balance the benefit of mainstream integration with sensitive assimilation of hospice philosophy.
Psychometric Properties of a Modified Version of the Caregiver Reaction Assessment Scale Measuring Caregiving and Post-Caregiving Reactions of Caregivers of Cancer Patients
Authors: Bachner Yaacov G. , O'Rourke Norm , Carmel Sara
Published: April 2019

Most care received by cancer patients is provided in the community by informal or unpaid caregivers. The unrelenting care demands can lead to physical, emotional, social, and financial reactions; furthermore, studies indicate that the effects of caregiving may endure after the patient's death. A need therefore exists for instruments measuring both caregiving and post-caregiving reactions. Among available instruments, the Caregiver Reaction Assessment (CRA) is a multidimensional, 5-factor measure designed to assess the negative and positive aspects of caregiving. The current study examined the psychometric properties and factor structure of responses to a modified Hebrew version of the CRA aimed at measuring caregiving and post-care-giving reactions. Although the scale was modified, it was assumed that, similar to the original CRA, a 5-factor structure would be supported by means of confirmatory factor analysis. A total of 236 bereaved primary caregivers of cancer patients from central and southern regions of Israel were recruited over a period of 18 months. As hypothesized, results provide support for a 5-factor structure of responses to this modified version of the CRA. The concurrent validity of responses to the scale was also supported. Replication of the findings with randomly derived and larger sample sizes is needed.
Development of a Palliative Care Education Program in Rural Long-Term Care Facilities
Authors: Kortes-Miller Kathy , Habjan Sonja , Lou Kelley Mary , Fortier Marilyn
Published: April 2019

In North America, people 85 years and older are the fastest growing age cohort and long-term care homes are increasingly becoming the place of end-of-life care. This is especially true in rural communities where services are lacking. Staff in long-term care homes lack education about palliative care, but in rural areas, accessing education and the lack of relevant curricula are barriers. The focus of this paper is to describe an approach to developing and delivering a research-based palliative care education curriculum in rural long-term care homes. The approach included conducting a detailed assessment of staffs’ educational needs and preferred educational formats; developing a 15-hour interprofessional curriculum tailored to the identified needs; and delivering the curriculum on site in rural long-term care homes. Staff confidence and participation in delivering palliative care increased. Based on work in northwestern Ontario, Canada, this approach can serve as a model for palliative care education in other rural areas.
Nurses’ Perceptions around Providing Palliative Care for Long-Term Care Residents with Dementia
Authors: Kaasalainen Sharon , Brazil Kevin , Ploeg Jenny , Martin Lori Schindel
Published: April 2019

Providing palliative care for residents with dementia in long-term care (LTC) settings is problematic due to their declining verbal abilities and related challenges. The goal of this study was to explore nurses’ perceptions around providing palliative care for such residents. Using a qualitative descriptive design, data were gathered from focus groups at three LTC facilities. Participants represented all levels of nursing staff. Concepts that emerged from the data were labelled, categorized, and coded in an iterative manner. Nurses appraise residents’ general deterioration as a main factor in deciding that a resident is palliative. Nurses often employ creative strategies using limited resources to facilitate care, but are challenged by environmental restrictions and insufficient educational preparation. However, nurses said they do not wish for residents to be transferred to a hospice setting, as they wish to grieve with residents and their family members. Nurses aim to facilitate a “good death” for residents with dementia, while trying to manage multiple demands and deal with environmental issues. Supportive and educational initiatives are needed for nursing staff and families of dying residents.
Nurse-Physician Collaboration in Pain Management for Terminally Ill Cancer Patients Treated at Home in Japan
Authors: Ishikawa Hirono , Kawagoe Koh , Kashiwagi Masayo , Yano Eiji
Published: April 2019

Collaboration between nurses and physicians is essential for successful pain management, especially in home care settings. This study describes how physicians collaborate with nurses for the pain management of terminally ill cancer patients treated at home in Japan, and evaluates the use of standing orders in pain management. Self-administered questionnaires were sent to all 565 institutions listed in a nationwide database of home care service providers for terminally ill cancer patients; 177 responding institutions were analyzed. In general, institutions caring for fewer patients per year were less likely to make specific efforts to collaborate with nurses and less likely to use standing orders in pain management. Given that many institutions provide home palliative care services on a small scale, a standard protocol for care should be developed and applied across all institutions to ensure the availability of quality home palliative care throughout the country.
Lived Experiences of Canadian Women with Metastatic Breast Cancer in Preparation for Their Death: A Qualitative Study.: Part II-Enabling and Inhibiting Factors; the Paradox of Death Preparation
Authors: Chunlestskul Kanoknuch , Carlson Linda E. , Koopmans Janice P. , Angen Maureen J.
Published: April 2019

Objectives

This study examined the essence of lived experiences of a sample of women with metastatic breast cancer in preparing themselves for their own death, with the goal of informing health provider interventions that support an acceptance of and preparation for death.

Methods

A phenomenological qualitative approach was used. Five women with metastatic breast cancer were interviewed on two occasions. Themes were analyzed, described, and validated, until saturation was met. Qualitative outcomes of the thematic analysis related to the enabling and inhibiting factors involved in preparing for one's own death.

Results

Factors that enabled and inhibited death preparation tasks in these women included: personal past death experiences; the availability of time and a place to think, learn, and work on death preparation activities; a chance to connect with others in similar situations; and personal and cultural attitudes towards death. Gaps and unmet needs within the health care system were identified. Finally, the paradoxical nature of various aspects of death preparation was highlighted.

Conclusions

Death preparation can be accomplished through enhancing supportive care from health care professionals, with beneficial outcomes for patients and families. Nurses should be conscious of the paradoxical nature of death preparation, and help women to confront and manage these.
Pediatric Palliative Care Online: The Views of Health Care Professionals
Authors: Ens Carla D.L. , Chochinov Harvey M. , BÉrard Josette L.M. , Harlos Mike S. , Stenekes Simone J. , Wowchuk Suzanne M.
Published: April 2019

The purpose of the study was to evaluate the role of an online resource for dying children, their family members, and health care providers from the perspective of pediatric palliative care experts. Semi-structured interviews with 12 leaders in pediatric palliative care in North America were conducted, exploring their perceptions and attitudes towards various aspects of Web-based resources for dying children and their care providers. Informants felt that an online resource may allow for a different form of expression, a connection between people undergoing a rare event, and an increase in education and support. Major challenges, such as accessibility, monitoring, and remaining current, would be ongoing. Other key themes included access, information, and anonymity. The data suggest that developing Web-based resources for dying young patients and their families may have merit. Should this take place, a feasibility study will be necessary to further determine the value of such a Web site for these vulnerable populations.
Place of Death for People with Noncancer and Cancer Illness in South Australia: A Population-Based Survey
Authors: Currow David C. , Burns Catherine M. , Abernethy Amy P.
Published: April 2019

A large representative population survey of 9,500 households reports the association between place of death, diagnosis (cancer vs. noncancer), and use of palliative care services of terminally ill South Australians. Thirty-one percent (1,920) indicated that someone close to them had died of a terminal illness in the preceding five years; 18% had died of noncancer illness and 82% of cancer. Sixty-two percent of deceased individuals accessed palliative care services. More patients with cancer than noncancer had had palliative care (65% vs. 48%; p<0.0001). Compared with cancer patients, those with noncancer illness had died in hospices less frequently (9% vs. 15%; p=0.0015) and in nursing homes more frequently (15% vs. 5%; p<0.0001). Similar proportions had died in hospital (60%) and at home (16%–20%). Palliative care service involvement did not reduce institutional deaths, but shifted them from hospital to hospice.
A New Tool to Assess Family Caregivers’ Burden during End-of-Life Care
Authors: Dumont Serge , Fillion Lise , Gagnon Pierre , Bernier Nadine
Published: April 2019

A significant challenge in virtually all care-giving studies is the measurement of burden, particularly within the specific context of palliative care. Existing tools in the caregiving field are not specifically designed for palliative care. A new tool, which specifically assesses family caregivers’ (FC) burden within the palliative care context, was systematically developed and validated. This paper describes the steps taken to develop this tool and to examine its psychometric properties. The Caregiver's Burden Scale in End-of-Life Care (CBS-EOLC) is a 16-item self-report questionnaire. Internal consistency reliability: Cronbach's alpha=0.95. Construct validity: Most inter-item associations were consistent with the conceptual framework that emerged from qualitative data analyses. Convergent validity: Interscale correlations: a) Zarit's Burden Interview (Bl)=0.72 (p<0.01); b) POMS (fatigue)=0.69 (p<0.01); d) POMS (vigour)=-0.27 (p<0.05). Social desirability was tested with the Crowne & Marlowe questionnaire ( r=-0.24). Sensitivity: Associations were consistent with patients’ functional status (ECOG) and FCs’ unmet needs. The CBS-EOLC is a reliable and valid measure available in French and English.
Characteristics of Referral to a Multidisciplinary Palliative Home Care Team
Authors: Drieskens Katrien , Bilsen Johan , Van Den Block Lieve , Deschepper Reginald , Bauwens Sabien , Distelmans Wim , Deliens Luc
Published: April 2019

Introduction

Until now, in Belgium at least, no scientific information has been available about which patients are referred to multidisciplinary palliative home care teams (MHCT) and by which caregivers, nor about timing of referral and factors associated with it.

Methods

A prospective cohort study was carried out during a nine-month period in the oldest Flemish MHCT, and included all patients for whom a palliative care trajectory had been initiated.

Results

In total, 325 patients (54% male, mean age 71 years, 83% cancer patients) were referred: 25% by their GP, 24% by hospital social workers, and 22% by the patient's family. Median timing of referral was 26 days (IQR 8–78) before death. Patients of 75 years or older were more likely to have been referred later by comparison with younger patients.

Discussion

Timely referral to a MHCT seems to be difficult and not equal for all patients. Referral timing varies largely by age groups and diseases.
Hospice: A Supportive Working Environment for Nurses
Authors: Smith Susan P. , Varoglu Gonal
Published: April 2019

This qualitative study describes the support behaviors of hospice nurses related to their job of caring for dying patients and their families. The findings reveal that these hospice nurses are very clear about when they need support and explicit about what they expect to happen when they need support. These nurses provide and receive the support they need to do their work predominently from each other. The findings of this study have implications for administrators and educators. Replication of this study in other work settings is called for.
Terminal Illness: Attitudes in Both an Acute Care and an Extended Care Teaching Hospital
Authors: Shedletsky Ralph , Fisher Rory H.
Published: April 2019

This paper describes an attitudinal survey carried out at Sunnybrook Medical Centre, a teaching hospital with large acute and extended care sections. The study assesses and compares the attitudes and behaviour of acute care and extended care staff towards terminally ill patients and also the attitudes and beliefs of a sample on non-terminally ill patients. Six hundred and fifty-one completed questionnaires were reviewed. Respondents were asked questions regarding the management of terminally ill patients in acute beds; informing patients of the nature of their disease; management of patient's emotional and physical needs; the use of investigations in the terminally ill. A majority felt that the terminally ill should not be managed in acute hospital beds and that patients should be informed of the nature of their disease, although staff did not uniformly favour full disclosure. While physical care was thought to be quite good, staff responses were much less favourable about fulfillment of patients’ emotional needs. As well, staff in acute care, more so than in extended care, felt that investigations were being over-utilized.
The Impact of Terminal Illness on the Spouse
Authors: Howell Doris
Published: April 2019

This descriptive study explores the responses, concerns and problems of the hospitalized, terminally ill, cancer patient's spouse. The findings of the study suggest that spouses experience a deterioration in their health, disturbed thought processes, and a variety of emotional responses when confronted with the impending death of a husband / wife from cancer. Spouses are concerned about the physical symptoms, such as pain, experienced by the patient and their inability to communicate with him or her. The spouses’ problems centre on changes or anticipated changes in their lifestyle. An important finding of the study was the identification of a group of spouses who appear to be at risk. These spouses reported a high incidence of physical symptoms in relation to their own health, a high incidence of emotional responses, and numerous concerns.
The Role of the Surviving Parent in the Adaptation of Bereaved Adolescents
Authors: Gray Ross Eric
Published: April 2019

The experience of having a parent become ill and die constitutes a major blow to an adolescent. One of the factors that may influence the ability of an adolescent to adapt in a healthy manner to the death of a parent is the degree of support available from the surviving parent. In the present study, 50 bereaved adolescents were seen for a semi-structured interview and psychological testing. Participants rated the overall helpfulness of their surviving parent and also described the kinds of help they received. The major dependent variable was level of depression, as assessed by the Beck Depression Inventory. Findings showed that individuals who had a good relationship with a surviving parent prior to and following loss adapted better than those with a poor relationship. Surviving parents tended to be rated in extreme ways – as either very helpful or as not at all helpful. Implications for interventions during the terminal phase of a parent's illness, as well as following death, are discussed.
Corynebacterium Parvum as Palliative Treatment in Malignant Ascites
Authors: Mahler Finn , Rapin Charles-Henri , Macgee William
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.
Policy, Resources and Practice: A Palliative Care Ward
Authors: Henteleff Paul D.
Published: April 2019

Palliative Care, like any other service, must operate with policies, practices and resources. The St. Boniface Hospital Program undertook to reduce the insecurities of dying at home by assuring direct admission of terminally ill patients to the Palliative Care Unit. The operation of the unit was simulated with a computer to define rules for controlling bed utilization. The simulated description of the program also enabled projection of bed needs to accommodate changing demand and guided redefinition of policies and practices to adjust to changes. Over a ten year period the program was able to double program size with fixed resources.
Children of Chaos: Planning for the Emotional Survival of Dying Children of Dying Families
Authors: Dubik-Unruh Sara
Published: April 2019

Children dying of perinatally-acquired HIV-infection may move from one chaotic system to another as medical and social services scramble to meet the growing need. Incarceration, addiction, illness, abandonment or court removal of children, hospitalization, sibling separation or homelessness may all contribute to family death, even before the physical death of family members. Early planning is essential to prevent further chaos and to develop placement and care strategies which provide for the emotional survival of young children facing physical and familial devastation. Considerations for such planning are discussed, with practical suggestions for supporting the child through change, loss and death.
Home–Based Palliative Care for Children
Authors: Levy Maurice , Duffy Ciaran M. , Pollock Pamela , Budd Elizabeth , Caulfield Lisa , Koren Gideon
Published: April 2019

To assess the necessity and feasibility of introducing a home-based palliative care program for children admitted to our neurosurgical unit and diagnosed as being terminally ill, we conducted an analysis of all such patients admitted to our unit over an 18-month period. Of a total of 30 patients, 22 (73.4%) had central nervous system tumors, 6 (20.0%) had myelomeningocele/hydrocephalus, and 2 (6.6%) had arteriovenous malformations. The mean duration ±SEM. of hospitalized days prior to death and the proportion of time spent hospitalized during the terminal phase of illness were 28.8 ± 4.77 and 0.327 respectively, for the 23 patients who died and on whom adequate data were available. Sixteen (70.6%) of these 23 patients died in hospital. Nine (30.0%) of the total group of patients were studied prospectively during the last 6 months of this study to determine the extent of their symptoms and to ascertain whether it would be feasible for them to be managed at home. The most troublesome symptoms in this subgroup were feeding difficulties, gastrointestinal symptoms, breathing difficulty, and seizures. These symptoms were managed either by (a) medications administered orally or by feeding tube or rectally, or by (b) noninvasive procedures carried out by a nurse under the direction of the admitting neurosurgeon. This study suggests that prolonged hospitalization for children diagnosed as being terminally ill can be avoided by introducing a home-based palliative program with involvement from a nurse and a physician familiar with drug therapy for terminally ill children.
Comparison of Beliefs and Practices of Ethnic Viet and Lao Hmong concerning Illness, Healing, Death and Mourning: Implications for Hospice Care with Refugees in Canada.
Authors: Schriever Silvia H.
Published: April 2019

This research paper examines the background, cosmology, and health, illness, healing, death, and mourning-related beliefs and practices of two groups of refugees in Canada, the ethnic Viet and the Lao Hmong. Emphasis is placed on the syndrome of uprootedness among refugees which exacerbates the patient's sense of loss in the palliative care setting. Practical recommendations to improve care of these patients and their families are made.
Home-Based Palliative Care for Children — Part 2: The Benefits of an Established Program
Authors: Duffy Ciaran M. , Pollock Pamela , Levy Maurice , Budd Elizabeth , Caulfield Lisa , Koren Gideon
Published: April 2019

Thirty-four patients have been admitted to our palliative care program since its institution in March 1986. Five were unsuitable and were withdrawn soon after admission. Of the remainder, 22 (75.9%) had central nervous system (CNS) tumors, 5 (17.2%) had myelomeningocoele, 1 (3.45%) had an arteriovenous (AV) malformation, and 1 (3.45%) had a storage disease. Twenty-five (86.2%) have since died and 17 (68%) of these have died at home. In comparison with a similar group of 30 patients studied in a feasibility study prior to the institution of our program, patients admitted to our palliative care program were hospitalized for significantly fewer days during the terminal phase of their illness (p<0.05) and a significantly higher proportion died at home (p<0.001). Following a survey of the parents of 14 children diagnosed with CNS tumors who died while under our care, we determined that the overall level of satisfaction with the program was high compared to care provided prior to admission to the program (p<0.01). Components of the program deemed most satisfactory were (1) being able to care for the child at home (p<0.01), (2) having access to a palliative care nurse (p<0.05), and (3) having access to a pediatric clinical pharmacologist (p<0.05). The most troublesome symptoms occurring in this group of patients were pain, gastrointestinal symptoms, and seizures. Most problems were adequately managed by the parents under the supervision of the team. Eighty percent of the terminal care for these patients was provided at home. Twelve of the 14 patients (85.7%) ultimately died at home. Our data show that parents can readily acquire the skills necessary to care for their children at home, under the supervision of a palliative care team directed by a nurse and a physician familiar with drug therapy for terminally ill children. In addition, overall parental satisfaction with this type of program is high.
Empowerment and Persons with Cancer: Politics in Cancer Medicine
Authors: Gray Ross E. , Doan Brian D. , Church Kathryn
Published: April 2019

Persons with cancer are likely to encounter a loss of personal control as a result of their illness experience. An empowerment perspective, which emphasizes the possibility of patients “owning their own lives”, is useful for understanding the interpersonal and social dynamics of patients’ loss of control and for guiding the development of strategies aimed at maximizing control. Because the factors influencing an individual's sense of control are multileveled, optimal empowerment occurs when strategies are employed at several levels of social organization. In this paper, a number of barriers to the empowerment of cancer patients are identified and strategies recommended to enhance patient empowerment in cancer care. The empowerment needs and strategies discussed here include: (a) the provision of optimal care, (b) the enhancement of individual patient power, (c) the development of a strong consumer voice in policy decision-making processes, and (d) societal attitude change.