bluuebunny/crossref_metadata_2025 huggingface dataset:
Understanding Why Palliative Care Patients ‘Like Day Care’ and ‘Getting Out’
Authors: Kennett Cynthia , Payne Malcolm
Published: April 2019

This study analyzed patients’ accounts of how living with terminal illness affects their quality of life and their experiences of attending St. Christopher's Hospice, which operates a psychosocial model of day care. Thirty-four patients took part in six audiotape recorded “goldfish bowl” teaching sessions for medical students. The tapes were transcribed and analyzed and the following themes were identified. Firstly, terminal illness causes multiple losses to quality of life; specific examples of physical limitations, loss of social interaction, low mood, and changed family dynamics were commonly experienced. Secondly, attending the day centre brought about beneficial changes. Patients described change of mood; enjoyment; achievement; sense of community, belonging, and mutual support; and were able to address problems with their relationships. It is concluded that attending day care improved these patients’ quality of life. This study, which attends to patients’ experiences of day care, builds on data acquired from studies using existing quality of life scales.
Quality of Care for Residents Dying in Ontario Long-Term Care Facilities: Findings from a Survey of Directors of Care
Authors: Brazil Kevin , Krueger Paul , Bedard Michel , Kelley Mary Lou , Mcainey Carrie , Justice Christopher , Taniguchi Alan
Published: April 2019

The purpose of this study was to collect information on the practice of end-of-life (EOL) care in long-term care (LTC) facilities in the Province of Ontario, Canada. A cross-sectional survey of directors of care in all licensed LTC facilities in the province was conducted between September 2003 and April 2004. Directors of care from 426 (76% response rate) facilities completed the postal survey questionnaire. The survey results identified communication problems between service providers and families, inadequate staffing levels to provide quality care to dying residents, and the need for training to improve staff skills in providing EOL care. Directors of care endorsed the use of a number of strategies that would improve the care of dying residents. Logistic regression analysis identified the eight most important items predictive of facility staff having the ability to provide quality EOL care. The findings contribute to the current discussion on policies for meeting the care needs of residents in LTC facilities until life's end.
Being a Family in the Midst of Living and Dying
Authors: Syrén Susanne M. , Saveman Britt-Inger , Benzein Eva G.
Published: April 2019

The aim of this study was to illuminate the way of being a family when one family member is in the midst of living and dying. A family systems frame and a life world perspective were used in interviews with five families. A qualitative analysis inspired by Giorgi revealed dialectic and dynamic processes in constant motion within and between the continua being in affinity-being in loneliness, being in power-being in helplessness, and being in continuity-being in disruption. When families were moving in the direction of being in affinity, power, and continuity, these seemed to be prerequisites for enduring their challenged life situation and for giving them a kind of repose. When the movements were in the opposite direction, existential and emotional suffering were manifested as individual embodied experiences such as depression and anxiety.
Compliance with and Understanding of Advance Directives among Trainee Doctors in the United Kingdom
Authors: Toller Claire A. Stark , Budge Marc M.
Published: April 2019

Aim

To investigate doctors’ response to and understanding of the legal status of advance directives.

Methods

A vignette-based study administered at palliative medicine, oncology, general practice, and geriatric medicine specialist registrar meetings (United Kingdom). Respondents determined the treatment to provide for a Patient presenting with a myocardial infarction with or without an advance directive requesting maximum therapy.

Results

Response rate 77% (43/56). Twenty-five percent (10/40) of respondents increased the care that they would provide in response to the advance directive (p=0.004); 77% (33/43) support /strongly support use of advance directives; 51% (22/43) did not know the legal status of advance directives; 44% found that their medical school education was not an important influence on their decision making.

Conclusions

Advance directives requesting treatment can increase the level of care provided by the physician, however, most trainees chose a level of care different from that in the advance directive. Confusion exists among doctors about the legal status of advance directives, which limits their usefulness. Medical education needs to be improved to train doctors to deal with advance directives.
Quality of Life of Patients with Terminal Cancer Receiving Palliative Home Care
Authors: Yan Szeto , Kin-Fong Cheng
Published: April 2019

The purpose of this study was to determine the levels of quality of life of patients with terminal cancer who received palliative care in home settings. Data were collected from 85 cancer patients with a life expectancy of less than 12 months using the McGill Quality of Life Questionnaire-Hong Kong version (MQOL-HK). The mean total quality of life scone was 6.36±1.37 out of 10. Among the various domains, the physical and existential domains scored relatively low with mean scores of 4.9±1.28 and 6.12±1.6 out of 10, respectively. Conversely, the sub-scales of sexual functioning and support yielded the highest scores with mean values of 7.45±4 and 6.8±1.9, respectively. There was a significant moderate correlation between age and the mean total quality of life scores (r=0.53, p<0.01). In addition, a moderate negative correlation was found between pain intensity and physical sub-scale (r=-0.57, p<0.01). In conclusion, patients with terminal cancer receiving palliative home care experienced a moderately high level of quality of life, especially in the sphere of support.
Physician Practice in the Discontinuation of Statins among Patients with Advanced Lung Cancer
Authors: Tanvetyanon Tawee , Choudhury Abdul M.
Published: April 2019

Background

Statins are effective in reducing events from coronary heart disease and can prolong survival. However, this benefit is controversial when other concurrent serious health problems greatly limit the patient's longevity.

Methods

We conducted a retrospective chart review of patients with advanced lung cancer who were receiving statins and had lived for at least one month since diagnosis.

Findings

Forty-seven patients with median age of 71 years were included. Discontinuation of statins occurred in 25 patients (53.2%) before the date of death. Median survival was 370 days. Statins were discontinued at a median of 244 days after cancer diagnosis. Discontinuations were more prevalent in patients who received chemotherapy or had a history of cerebrovascular diseases. Lipid monitoring was observed in 25 patients (53.2%).

Interpretation

About half of patients with advanced lung cancer who were prescribed statins did not have this drug discontinued until the time of death. Lipid monitoring was suboptimal and, when it occurred, indicated the lipid goal was rarely achieved.
Developing Rural Communities’ Capacity for Palliative Care: A Conceptual Model
Authors: Lou Kelley Mary
Published: April 2019

The population in Canada and other developing countries is aging, increasing the need for palliative care services. In rural communities, care of dying people is normally provided by health care professionals as part of a generalist practice, not by palliative care specialists. Despite a lack of specialists and resources, some rural communities have developed local palliative care programs. The goal of this research was to conceptualize rural communities’ process of developing palliative care programs using a theoretical perspective of community capacity development. Data were from nine focus groups of interdisciplinary rural health care providers who provided palliative care in seven provinces/territories of Canada. The outcome is a theoretical model that conceptualizes the process of developing palliative care programs in four sequential phases: antecedent community conditions, a catalyst, creating the team, and growing the program. The activities of each phase are outlined. This research offers practical and theoretical knowledge to guide practitioners and planners seeking to develop palliative care programs in other rural communities.
Sustainable Practice Improvements: Impact of the Comprehensive Advanced Palliative Care Education (CAPCE) Program
Authors: Harris Diane , Hillier Loretta M. , Keat Nancy
Published: April 2019

This paper describes an education program designed to improve palliative care practice through the development of workplace hospice palliative care resources (PCRs), and its impact on knowledge transfer and longer-term changes to clinical practice. Evaluation methods included pre- and post-program questionnaires, and a survey of learners’ (n=301) perceptions of program learning strategies. Interviews (n=21) were conducted with a purposeful sample of PCRs and representatives from their work sites. Ratings of the sessions indicated that they were relevant to learners’ clinical practice. At follow up, the majority of learners (83%) continued to serve as PCRs. Many positive effects were identified, including enhanced pain and symptom management, staff education, and development of care policies and guidelines. Management support, particularly the prioritization of palliative care and staff development, were factors facilitating sustained implementation. These findings highlight the importance of multimodal learning strategies and supportive work environments in the development of PCRs to enhance palliative care practice.
Lived Experiences of Canadian Women with Metastatic Breast Cancer in Preparation for Their Death: A Qualitative Study. Part I-Preparations and Consequences
Authors: Chunlestskul Kanoknuch , Carlson Linda E. , Koopmans Janice P. , Angen Maureen
Published: April 2019

Objectives

This study aimed to detail the tasks of death preparation and the consequences of such preparation for women with metastatic breast cancer.

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. Outcomes of thematic analysis related to the impetus, process, and consequences of preparing for one's own death.

Findings

The women prepared for their death by: acknowledging their grief; preparing mentally; seeking information and support; preparing the family; and preparing for the end of life. They also engaged in creating life projects that enhanced their connections with loved ones, and lived full and joyful lives. These activities helped increased their readiness to die in peace.

Conclusions

Preparing for their own death can help women with incurable cancer live full, satisfying lives, and be prepared to face their own death with peace. Helping women express their feelings around their own death and their preparation for death should be a key interdisciplinary psychosocial nursing intervention.
Hospice Palliative Care Volunteers: A Unique Care Link
Authors: Weeks Lori E. , Macquarrie Colleen , Bryanton Olive
Published: April 2019

In this research, we endeavoured to gain a clearer understanding of what impact hospice palliative care (HPC) volunteers have on family caregivers and the underlying factors that contribute to this. We conducted ten face-to-face interviews with bereaved women who had previously provided care for their spouses and who used HPC volunteers. We checked our interpretation through a feedback focus group. Using a methodological hermeneutic approach, we came to understand the unique position HPC volunteers occupy within the formal health care system. Our constitutive organizing theme was manifest throughout the women's stories in seven thematic areas that explicate the dimensions of the overarching theme: the Unique Care Link. We identified seven themes that exemplify specific ways in which HPC volunteers have a positive impact on the lives of spousal caregivers. This knowledge can be incorporated into the further development of training and support programs for HPC volunteers, and to increase the quality of volunteer HPC services provided to family members.
Does Recognition of the Dying Phase Have an Effect on the Use of Medical Interventions?
Authors: Veerbeek Laetitia , Van Zuylen Lia , Swart Siebe J. , Jongeneel Gerrieke , Van Der Maas Paul J. , Van Der Heide Agnes
Published: April 2019

During the dying phase, patients often receive interventions that are not aimed at promoting their comfort. We investigated how recognition of the dying phase affects the use of interventions by comparing patients for whom the dying phase had been recognized with patients for whom it had not been recognized. We included 489 of 613 patients (80%) who died either in a hospital, nursing home, or primary care setting between November 2003 and February 2006. After the death of patients, nurses filled in questionnaires, and patient records were searched for information about therapeutic and diagnostic interventions applied during the dying phase. Caregivers had recognized the dying phase of 380 patients (78%). The number of patients who had received diagnostic interventions during the last three days of life was significantly lower when the dying phase had been recognized (39% vs. 57%) (p=0.00). Therapeutic interventions were used in similar frequencies in both groups. We conclude that recognition of the dying phase reduces the number of undesirable diagnostic interventions.
Palliative Care Patients in the Emergency Department
Authors: Lawson Beverley J. , Burge Frederick I. , Mcintyre Paul , Field Simon , Maxwell David
Published: April 2019

Although end-of-life care is not a primary function of the emergency department (ED), in reality, many access this department in the later stages of illness. In this study, ED use by patients registered with the Capital Health Integrated Palliative Care Service (CHIPCS) is examined and CHIPCS patient characteristics associated with ED use identified. Overall, 27% of patients made at least one ED visit while registered with CHIPCS; 54% of these resulted in a hospital admission. ED visiting was not associated with time of day or day of the week. Multivariate logistic regression results suggest older patients were significantly less likely to make an ED visit. Making an ED visit was associated with hospital death, rural residence (particularly for women), and having a parent or relative other than a spouse or child as the primary caregiver. Further research may suggest strategies to reduce unnecessary ED visits during the end of life.
Are We Listening?
Authors: Librach S. Lawrence
Published: April 2019

This feature in each issue of the journal, will serve to indicate a main direction of thought about palliative care, somewhat as the compass and map offer guidance in the sport after which this section is titled.
The Impact of Palliative Care: Present and Future
Authors: Latimer Elizabeth J.
Published: April 2019

Palliative care is a concept of care with philosophical basis comprising people who work in the field. It exists in relation to a system that stands more or less ready to receive it. The influence of palliative care on the present health care scene is significant. It is reflected in popular thought and literature, current trends in health care, health care literature, new approaches to pain and symptom control, and health sciences education. The factors that will affect the future impact of palliative care are variables related to its definition, the providers themselves, and the system in which it is established. Critical evaluation of the outcome for patients, families, and the system, although difficult in such a field, is essential to defining present activities and future directions.
Will Heroin Improve Pain Management?
Authors: Sellers E.M.
Published: April 2019

The debate on the legalization of heroin has focussed attention on the broader issue of pain management of cancer. Clinicians in palliative care should be aware that poor pain management is related primarily to lack of knowledge, appropriate skills and attitudes, and health care resources. The availability of heroin will not improve these. The need is for research about pain and alternative drugs and dosage forms and the variables affecting efficacy. Professional and public education about pain management is essential.
Global Exchange: Commentary
Authors: Morgan J.D.
Published: April 2019

A major international conference, entitled “Helping Children Cope with. Death,” brought together many of the leading experts on children and death to address issues about children's concepts of death, death education, and dying children. Highlighted were many of the innovative and exciting developments taking place in these areas, including paediatric hospices, school programs, and art therapy. The conference served to emphasize the responsibility parents and professionals have for working openly and effectively with dying and grieving children. At the same time, it is clear that much more research, education, and practice need to take place in this developing field.
The Concerns of Hospice Patients and the Role of Hospice Volunteers
Authors: Ellerton Mary-Lou , Downe-Wamboldt Barbara
Published: April 2019

The purpose of the study was to identify the concerns of hospitalized terminally ill patients, newly enrolled in a volunteer hospice program and to determine staff nurses’, and volunteers’ perceptions of the hospice volunteer role. The degree to which patients felt lonely, anxious, depressed, afraid of pain, and understood was determined using quantitative measures. Nurses’ and hospice volunteers’ perceptions of the volunteer role were assessed through a self-report questionnaire. The results indicated that loneliness and depression are major concerns among terminally ill patients. Anxiety and fear of pain were not reported as significant. Almost half of the patients identified a nurse as the person in hospital who understood best how they felt about being sick and in hospital. The manner in which volunteers used their time with patients seems congruent with the volunteer roles that both they and the nursing staff identified as most important. The findings provide a basis upon which to develop effective hospice programming and evaluation.
The Significance of Flexibility and Symptom Control as Elements of a Health Care Model in Working with the Terminally Ill
Authors: Parry Joan K.
Published: April 2019

This quantitative descriptive study examines social workers’ perceptions of two elements of an ideal model of care: flexibility and symptom control. Workers in three institutional settings – hospitals, skilled nursing facilities, and hospices – are compared. The sample included 100 social workers employed in the three settings. The study found that social workers in hospices perceive a significantly greater degree of flexibility and symptom control for their terminally ill patients than do social workers in the two other settings. The results imply that social workers will be better able to provide assistance to these patients and their families in a less bureaucratic and a more humanized environment. Further studies would help to determine if these two elements can be utilized by all health care staff in nursing homes and medical settings.
Terminal Care in Shetland
Authors: Cleminson Bruce
Published: April 2019

This paper describes provision for dying patients in the Shetland Isles, both in the author's practice – which serves 2,750 people, living in a 15-mile radius of Scalloway – and also the area as a whole, with about 23,000 people living on the 17 inhabited islands of the Shetland group. The possibilities for improving care are considered and existing models for hospice-type services are examined – and found to have little relevance to an area which is remote and has a small population. The importance of good symptom control and good nursing care is noted, and ways to improve these are put forward. The family doctor, who has adequate training and expertise in terminal care, is seen to have a unique opportunity for looking after both the dying patient and his family. This is particularly relevant in an area far from specialist services, because such patients are rarely more than 30 minutes by car from their family doctor's surgery.
The Evolution of a Medical School Curriculum in Death and Dying
Authors: Penney June C.
Published: April 2019

A medical school curriculum in “Death and Dying” evolved through a number of catalysts. A study demonstrated medical students’ reactions to human dissection and their responses led to a design for an “Orientation to Human Dissection.” These events, other simultaneous catalysts, and the resulting curriculum in Death and Dying are described. Evaluation of the course, types of elective studies, and a memorial service are discussed.
The Morality of Withholding Food and Fluid
Authors: Winkler Earl R.
Published: April 2019

This paper discusses the morality and legality of withholding food and fluid in terminal and other cases. Is the provision of nutrition strictly for the purpose of sustaining life, a medical treatment, or part of basic nursing care? The author argues that, if regarded as a treatment modality, such as artificial respiration or dialysis, the withholding of nutrition can be justified in some circumstances. The author also looks at court decisions regarding the question of homicide as the cause of death in cases where medical treatment was withdrawn or terminated.
The Therapeutic Equivalence of IM and PO Administration of Morphine – 1:3 or 1:6?
Authors: Kaiko Robert F.
Published: April 2019

When alternating between the intramuscular and oral routes of morphine adminstration, dosage adjust-ments must be made according to differences in rel-ative analgesic potency. While study has shown that six times as much morphine is required orally as intramuscularly to obtain the same total analgesic effect, anecdotal experience suggests that three times as much drug is required orally as is required parenterally. The following examines the arguments both for and against the two approaches to dose adjustment when alterations in route of administration are indicated. There is no compelling reason to change the use of the 1:3 ratio in cancer-related pain. The original experimental ratio of 1:6 is only an apparent inconsistency in that the conditions of dosing and other factors are most likely responsible for this apparent discrepancy. It will only be with a well-controlled study, however, conducted under appropriate conditions, that the 1:3 ratio can be confirmed.
Oral Complications in Patients with Advanced Cancer
Authors: De Conno Franco , Ripamonti Carla , Sbanotto Alberto , Ventafridda Vittorio
Published: April 2019

Disturbances caused by lesions of the oral cavity play an important part in the alteration of the qualtity of life of cancer patients. The main complications affecting the oral cavity are infections (fungal, viral, bacterial), neutropenic ulcers, drug-induced stomatitis, dry mouth, and taste alteration. Most of the information available about these entities has been acquired in the cancer patient without advanced disease. The little known about the epidemiology and physiopathology of such lesions in the advanced phase of cancer is presented and approaches to management are suggested.
Quality of Terminal Care: Salient Indicators Identified by Families
Authors: Kristjanson Linda J.
Published: April 2019

This study was the second phase of a three phase project designed to develop and test a tool to measure family satisfaction with terminal care. The first phase was a qualitative study that identified indicators families of terminally ill cancer patients perceived to be important to patient and family care. In Phase II a Q-Sort was administered to 210 family members from three different care settings to obtain relative rankings of the items identified in Phase I. Items most and least important to patient care and family care were identified for the total sample and for each care setting. Patient comfort, the need for information regarding the patient's illness, and the availability of a hospital bed were ranked as most important by the total sample. The extent of agreement among family members and within care settings was estimated using Kendall's coefficient of concordance. Demographic variables that were significantly related to item rankings are reported. Phase III will use the most salient items identified in Phase II to develop and test a scale to measure family satisfaction with terminal care.
Perinatal Bereavement Support Service: Three-Year Review
Authors: Moscarello Rebeka
Published: April 2019

Perinatal loss and grief have been recognized as a special form of loss in the last ten years. Perinatal death includes miscarriage, therapeutic abortion, stillbirth, and infant death shortly after birth. Acknowledgement of the death and support to mourn their loss by significant others promotes resolution of this bereavement. If perinatal bereavement is not resolved, one-quarter to one-third of mothers may go on to develop a clinical depression. A multidisciplinary Perinatal Support Service is in place at Women's College Hospital to provide grief counselling to the mother and her family who have experienced a stillbirth or neonatal loss. The service has a direct link to the community through the Public Health Nurse on the obstetrical service. A review of three years reveals a high rate of referral by the attending physician and obstetrical nurse.
Heroic Self-Healing and Cancer: Clinical Issues for the Health Professions
Authors: Gray Ross E. , Doan Brian D.
Published: April 2019

Increasingly over the last few decades, persons with cancer are being cured or surviving longer. As a result, the popular press has given more attention to the possibilities for “beating” cancer. The role of personal control in overcoming cancer has been promoted via a heroic formula that includes positive thinking, healing imagery, and personal growth. Empirical support for a psychospiritual influence on cancer illness is tenuous. Nevertheless, the psychological implications of belief in such influence are important in their own right. In this paper, the positive and negative consequences for patients of popular conceptions of the heroic cancer survivor are explored. Clinical and ethical issues related to the health professional's responses to patients’ belief in heroic self-healing are discussed, and a rationale is presented for adopting a non-judgmental, person-centered approach.
‘Stressors’ and Difficulties in Dealing with the Terminal Patient
Authors: Alexander David A. , Ritchie Ewan
Published: April 2019

This study investigated by means of questionnaires and semi-structured interviews some of the major sources of stress for palliative care nurses and how they deal with these. The nurses’ replies were related to a general measure of health. Irrespective of their shifts, duties, and training, the nurses in two units specializing in palliative care shared very similar views. The most potent influence on the nurses’ attitude to death was their own experience with dying patients. The nurses found it particularly stressful to deal with patients who suffer intractable pain, with those patients who have young children, and with those patients who are afraid to die. In addition, dealing with psychiatric symptoms and with relatives are major sources of stress. Generally, it was found that those symptoms and situations which left nurses feeling helpless and useless were the most stressful. The implications of these findings for nurse training and education are discussed.
Rectal, Buccal, and Sublingual Narcotics for the Management of Cancer Pain
Authors: Ripamonti Carla , Bruera Eduardo
Published: April 2019

We review current knowledge on the rectal, buccal, and sublingual routes of narcotic administration as potential alternatives to oral, intramuscular, intravenous, and subcutaneous administrations of narcotics for the management of cancer pain. Most of the experience reported in the literature is based on the use of rectal, sublingual, and buccal narcotics for the management of acute pain syndromes. Preliminary evidence suggests that both morphine sulfate and chlorhydrate can be administered rectally because there is acceptable absorption with this route even if considerable interpersonal variation exists.

There are no controlled trials on the long-term use of rectal morphine for cancer pain. There are very few reports on the clinical effects of sublingual and buccal morphine, and pharmacokinetic data are often debatable. There is evidence to justify further research into all three routes of narcotic administration. At the moment rectal use is justified in clinical trials in cancer patients, but there are not enough data on the pharmacokinetics of different narcotics when administered by the buccal or sublingual routes.
Antidepressants in Cancer Pain
Authors: Panerai Alberto E. , Bianchi Mauro , Sacerdote Paola , Ripamonti Carla , Ventafridda Vittorio , De Conno Franco
Published: April 2019

Studies conducted in recent years have helped define the role of antidepressant drugs in the management of cancer pain. The anti-nociceptive action of these agents seems to be independent of beneficial effect on depression or mood. Among antidepressant drugs, those of the tricyclic class are preferred when an analgesic effect is sought. Their primary application is for pain due to nerve injury, so-called “neuropathic pain”. Although the co-administration of tricyclic antidepressants may increase plasma morphine concentrations, any potentiation of morphine analgesia is thought not to be due to an increased bioavailability of the opiate, but to an intrinsic analgesic effect of antidepressants. On this basis, the use of antidepressants in combination with opioids for the treatment of cancer pain is suitable when a component of deafferentation is present or when there is concomitant depressive illness.
Palliative Care Needs of Residents, Families, and Staff in Long-Term Care Facilities
Authors: Rutman Deborah , Parke Belinda
Published: April 2019

While there is growing recognition that the physical needs of LTC residents have increased markedly in the 20 years, the palliative care needs of facility residents and their families are poorly understood. There also is a dearth of information on the educational and support needs of LTC facility staff vis-a-vis palliative care. Operating from the Juan de Fuca Hospital Society (a network of extended care facilities in Victoria), our Palliative Support Team (PST) was conceived in order to act as an educational resource to JdF staff as well as to provide expert consultation on palliative care issues. As part of the evaluation of this pilot program, a sample of 74 Juan de Fuca workers were interviewed to determine their perceptions of resident, family, and staff needs in relation to palliative care. In this paper, discussion is focused on the palliative care needs identified by professional caregivers. The ways in which a palliative care consultation team can address some of these needs are also discussed.
Assessment of Upper Gastrointestinal Motility in the Cancer–Associated Dyspepsia Syndrome
Authors: Nelson Kristine A. , Walsh T. Declan , Sheehan Finbarr G. , O'Donovan Peter B. , Falk Gary W.
Published: April 2019

Cancer patients experience many gastrointestinal symptoms which may lead to weight loss. Assessment of gastrointestinal motility may contribute to our understanding of these symptoms and suggest rational therapeutic approaches to the anorexia-cachexia syndrome. We have evaluated a simple, inexpensive, well-tolerated test of upper gastrointestinal motility in patients with advanced cancer. One-centimetre portions of radiopaque nasogastric tubing were ingested with food. Six hours later, a flat-plate abdominal x-ray was obtained to determine the marker placement. Patients were evaluated for gastrointestinal symptoms. Those with more symptoms, particularly early satiety, had a greater incidence of reduced upper gastrointestinal motility.
A Clinical Note on Sublingual Buprenorphine
Authors: De Conno Franco , Ripamonti Carla , Sbanotio Alberto , Barletia Lucilla
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.
Music Therapy in Pain and Symptom Management
Authors: Magill-Levreault Lucanne
Published: April 2019

The use of music therapy in pain and symptom management in the care of patients with long-term and life-threatening illnesses can be an effective nonpharmacologic approach to help ameliorate pain and suffering. By altering affective, cognitive, and sensory processes, music may decrease pain perception by distraction, change in mood, increased control, use of prior skills, and relaxation. This article reviews the background of the use of music therapy in pain management, explores a theoretical framework, and describes methods and techniques. Three case studies are provided to demonstrate the work.
Music and Emotion in Palliative Care
Authors: Salmon Deborah
Published: April 2019

Music and emotion may share certain essential characteristics allowing the depth and breadth of music to resonate with that of emotional experience. It is perhaps this resonance which facilitates the experience, expression and working-through of feelings in music therapy work with the the terminally ill. The author explores five characteristics common to both music and emotion using clinical examples to illustrate how these might be at play in music therapy work in the palliative care setting.
A Phase II Study of Delta-9-Tetrahydrocannabinol for Appetite Stimulation in Cancer-Associated Anorexia
Authors:   A World Health Organizadon Demonstration Project, Nelson Kristine , Walsh Declan , Deeter Paula , Sheehan Finbar
Published: April 2019

Purpose

To evaluate the appetite-stimulating properties of delta-9-tetrahydrocannabinol (THC) in patients with anorexia due to advanced cancer.

Patients and Methods

Nineteen patients with various malignancies were entered. All had cancer-associated anorexia and a life expectancy greater than four weeks. Patients were started on THC 2.5 mg p.o. t.i.d. one hour after meals for four weeks. Evaluations for side effects, efficacy, acceptability and satisfaction were conducted at two and four weeks.

Results

18 patients were evaluable. Ten patients completed the entire 28-day study. Four patients experienced grade I toxicity and three withdrew at their request. Thirteen patients reported an improved appetite.

Conclusion

THC is an effective appetite stimulant in patients with advanced cancer. It is well tolerated at low doses. Further studies are needed to determine the most appropriate dose and the specific population most likely to respond.
Family Functioning and Its Implications for Palliative Care
Authors: Davies Betty , Reimer Joanne Chekryn , Martens Nola
Published: April 2019

Palliative care programs are based on the principle that care should be directed to the family as a unit. However, existing guidelines for care of the family tend to be described in general terms. Analysis of data from a series of three research studies describing the experience of twenty-three families caring for a terminally ill member revealed that family functioning influenced their experience. The dimensions of family functioning are described and guidelines for working with families are proposed.
Breaking Bread with the Dead … Poetry as Care for the Dying?
Authors: Williams William Carlos , Roy David J.
Published: April 2019

“It is difficult to get news from poems yet men die miserably every day for lack of what is found there.”
When Does Palliative Care Begin? A Needs Assessment of Cancer Patients with Recurrent Disease
Authors: Dudgeon Deborah Jane , Raubertas Richard F. , Doerner Kathleen , Tobin Martha , Rosenthal Susan N.
Published: April 2019

This cross-sectional study compared the prevalence and intensity of needs expressed by cancer patients at the time of first recurrence (n=75) with those of patients at the time of disease progression (n=75). On a 72-item Likert-type scale participants rated from “none” to “very much” the severity of physical symptoms; emotional, psychological, and social problems; and difficulties with activities of daily living. The progressive disease group reported more problems than the first recurrence group in 11 of 24 (47%, p<0.05) symptom-related questions. The progressive disease group also expressed greater needs in 19% of the function-related questions. There were no differences in reported psychological problems, responses to recurrence, or greatest concern between the two groups. These results support the need for palliative care throughout the entire course of illness.
The Role of Radiation Therapy in Palliative Care
Authors: Kirkbride Peter
Published: April 2019

Radiation therapy plays a significant role in the palliation of symptoms of patients with malignant disease. This article looks at the scientific and clinical rationales for its use and discusses some of the current controversies in palliative radiotherapy. The utility of radiation therapy is discussed and potential side effects are described. Radiation oncologists are important members of the multidisciplinary team providing palliative care. Their involvement in the care of patients with advanced or metastatic malignant disease allows patients to benefit from a modality of treatment which can be both effective and minimally inconvenient when used appropriately.
Dying of Non-Malignant Diseases in General Practice
Authors: Kurti Linda G. , O'Dowd Thomas C.
Published: April 2019

Recent policy changes within the British National Health Service have encouraged the provision of care within the community. The objective of this study was to explore the needs of informal caregivers of people with non-malignant diseases who wished to remain in their own homes until death. Semi-structured interviews with a non-random sample of 20 bereaved carers from 14 surgeries, their general practitioners, and district nurses were analyzed to discover the extent and quality of the care provided by the primary care team. One quarter of the doctors considered that palliative care applied exclusively to people with cancer. One half of the doctors felt that palliative care was primarily concerned with pain relief. Both doctors and nurses believed that their role was that of coordinating care for the patient. Carers were reluctant to criticize professional caregivers, but the results of this study suggest that carers need help with the burden of caring, including emotional support, advice and information regarding social services and financial benefits, and recognition of their caring role. Palliative care is not exclusive to people with cancer but should be extended to people with non-malignant diseases, encompassing not only symptom relief but also explicitly including emotional or spiritual support, care of the family, and support in preparing for the end of life.
Tolerability of Continuous Subcutaneous Octreotide Used in Combination with Other Drugs
Authors: Mercadante Sebastiano
Published: April 2019

Continuous subcutaneous infusion of octreotide combined with other drugs has proved to be useful in some circumstances in palliative care setting when the oral route is no longer available. Forty-four patients were administered octreotide alone or in combination with other drugs in the same syringe driver for symptom control in advanced cancer patients. Good tolerability and compatibility were observed without visual drug precipitation for a period of 48 hours at room temperature, the standard clinical situation in patients’ homes. Such a combination of drugs administered by the subcutaneous route makes possible the’ adequate control of symptoms in the final days of life.
A Reliability and Validity Study of the McMaster Quality of Life Scale (MQLS) for a Palliative Population
Authors: Sterkenburg Carol A. , King Bernice , Woodward Christel A.
Published: April 2019

The McMaster Quality of Life Scale (MQLS) was developed to measure the quality of life in a palliative patient population. This paper describes the tool and its psychometric properties. Palliative stage patients could assess their condition using this tool (r=0.84; 95% CI 0.76–0.94). Although ratings by different raters (patient, family, staff) were correlated, systematic differences were found by source of rating, which suggests that proxy rating (substituting family or staff ratings for a patient rating) should be avoided. The MQLS was sensitive to changes in the patient's quality of life. Neither age nor sex of patient influenced total score obtained. Persons close to death rated their quality of life as being poorer than those who were alive at the end of the data collection period. People who needed to have the MQLS read to them rated their quality of life somewhat lower than patients who could complete the task by themselves. Staff-rated MQLS scores correlated significantly with the staff-rated Spitzer Quality of Life Index. This study suggests the MQLS is a reliable and valid measure of quality of life during the palliative phase.
Evaluating a Palliative Care Program: Methodology and limitations
Authors: Jarvis Hilary , Burge Frederick I. , Scott Chris A.
Published: April 2019

The article describes an evaluation of a palliative care service in a regional and tertiary care facility. The service components are described. The four outcomes chosen for evaluation were: (a) symptom relief; (b) satisfaction with care for patients/families; (c) utilization of community resources; (d) good nursing morale and low staff stress. Quality of life was measured using a symptom distress scale; satisfaction using an adapted Kristjanson FAMCARE scale; community resources with opinion and satisfaction surveys; and staff morale and stress with the Maslach Burnout Inventory and Latack's Coping Questionnaire. Results showed that overall symptom distress was reduced. Patients/families were generally satisfied, with some areas needing attention. Physicians were generally satisfied and believed patients/families benefited from the psychosocial support, respite, and education/information. Nurses felt they had the time, energy, resources and support to give quality care.
Home and Inpatient Hospice Care of Terminal Head and Neck Cancer Patients
Authors: Talmi Yoav P. , Bercovici Michaela , Waller Alexander , Horowitz Zeev , Adunski Abraham
Published: April 2019

The objective is to evaluate and compare data on a cohort of terminal head and neck cancer (HNC) patients from both home and hospital-based hospice programs and to define the particular problems and needs of those patients. The setting was a tertiary academic referral centre in Tel Hashomer, Israel. We carried out a retrospective survey of patient charts based on hospice databases and death certificates of the hospital tumor registry. Charts of 102 HNC patients admitted to the hospice between 1988 and 1994 and 24 charts of HNC patients cared for by the home hospice program between 1990 and 1994 were studied. Pain, airway problems, and dysphagia were the common problems reported. A comparison of the two programs showed home hospice patients to be younger and with lower pain levels, less weight loss, and less oral candidiasis. There were fewer oral cavity tumor patients in the home hospice group. The incidence of distant metastases was in the 50% range in both groups. Judging by chart entries relating to pain, airway care, and food intake, treatment protocols were effective in both programs in the alleviation of pain and other symptoms. Both programs appeared to provide adequate care for terminal HNC patients. The main differences in care between the two groups stemmed from the decisions of referring physicians and not from a predetermined level of care. The incidence of distant metastases was higher than that reported in earlier clinical series.
The Management of Terminal Illness: Opinions of the Medical and Nursing Staff in a Paris University Hospital
Authors: Vidal-Trécan Gwenaëlle , Fouilladieu Jean Luc , Petitgas Geneviève , Chassepoux Aliette , Ladegaillerie Geneviève , Rieu Michel
Published: April 2019

The views of French physicians and nurses of the organization of palliative care have not been previously analyzed. We surveyed opinion on the care of the terminally ill in a 1000-bed Paris university hospital. Data were obtained in 1992 by non-directed interviews of leading physicians and semi-directed interviews of nurses. Most physicians wished to manage terminal care in their departments. Patient and family preferences were considered in choosing the place for care. Treatment of hospitalized patients should be limited to relieving symptoms. Department heads and senior nurses agreed on most problems encountered in the management of care. The psychological burden borne by nurses was emphasized. Terminal care training and the possibility of consulting experts in palliative care were the main suggestions for improvement cited by both department heads and senior nurses. Integrating this knowledge into the planning process should result in improved care and in increased satisfaction for the care providers.
Data Collection as the First Step in Program Development the Experience of a Chronic Care Palliative Unit
Authors: Munn Barry , Worobec Frances
Published: April 2019

This retrospective descriptive study of 73 patients who died in St. Peter's Hospital examines and contrasts the patient profile and referral sources of a palliative care unit in a chronic care hospital over two six-month periods during 1994 and 1995. Shortened length of stay (83.8 and 43.2 days respectively), documentation issues, CPR practices (CPR was desired by seven patients up to the time of death), and lack of referrals from long-term care facilities have led St. Peter's Hospital to ask further questions of its palliative care program, e.g. given the lack of referrals from long-term care facilities, how is palliative care being managed in this sector? In Ontario, palliative care has been placed under the domain of chronic care and program development depends in part on the knowledge of the population it serves. This study is a first step.
Review of a Home-Based Palliative Care Program for Children with Malignant and Non-Malignant Diseases
Authors: Kopecky Ernest A. , Jacobson Sheila , Joshi Prashant , Martin Maria , Koren Gideon
Published: April 2019

This retrospective chart review presents the patient characteristics and utilization of the home-based palliative care program at The Hospital for Sick Children in Toronto. A total of 126 children dying from a broad spectrum of diseases was admitted during the period 1986–1994, referred from neurosurgery, genetic/metabolic, neurology, neonatology, nephrology, cardiology, general pediatrics, general surgery, and pulmonology. At the time of review, 15 patients remained alive and 18 had been discharged from the program. Mean age at the time of referral was 4.8 ± 0.51 years and mean age at death was 5.3 ± 0.55 years. The mean number of days in hospital was 26.5 ± 14.6 while days spent at home averaged 98.4 ± 15.2; thus 80% of the children's remaining time was spent at home. The average number of parent-team contacts was 3.5 ± 0.9 by pager and 24.0 ± 2.9 by telephone. Of the 93 patients who died in the program, 53% died at home, 18% died in community hospitals, and 29% died in a tertiary care facility. Analgesic medications were administered to 54% of the patients; 56% of these then required opioid analgesia for pain and symptom management. Home-based palliative care appeared to be an effective program for many children with a variety of terminal illnesses after adequate supports for the child and family had been established.