bluuebunny/crossref_metadata_2025 huggingface dataset:
Symptom Prevalence and Control during Cancer Patients’ Last Days of Life
Authors: Ventafridda Vittorio , Ripamonti Carla , De Conno Franco , Tamburini Marcello , Cassileth Barrie R.
Published: April 2019

The lack of control of physical suffering among cancer patients in the last days or hours of life is a common medical problem but it is rarely discussed in an open fashion. We carried out a prospective study of the dying of 120 terminal cancer patients assisted by a home care team. We documented how long it was before death that physical symptoms, unendurable to the patient and controllable only by sedation-inducing sleep, appeared. In 63 patients (52.5%), unendurable symptoms due to tumor progression or irreversible acute organic phenomena appeared, on average two days before death. Of the 63 patients, 47 had only one uncontrollable symptom, 15 had two symptoms and one patient had three symptoms. The most common symptoms included dyspnea (33 patients), pain (31), delirium (11), and vomiting (5). The most frequent symptoms were dyspnea in lung and head and neck disease; pain in breast, gastrointestinal tract, colon-rectum, and male genitourinary tract cancer; and vomiting in female genitourinary tract malignancies. Data reported emphasize the clinical relevance of physical symptoms in the last days of life in terminal cancer patients and how these serve to indicate imminent death. More than 50% of these patients die with physical suffering that is controllable only by means of sedation.
Families in Supportive Care — Part I: The Transition of Fading Away: The Nature of the Transition
Authors: Davies Betty , Reimer Joanne Chekryn , Martens Nola
Published: April 2019

The entire family unit is affected when one of its members is in need of supportive care; however, relatively few studies pertaining to palliative care have focused on the family as a unit. The purpose of this study was to examine the experience of families having a member with advanced cancer who was receiving palliative care either at home or in the hospital. Eight families (24 family members) participated in semi-structured interviews which were audiotaped, transcribed, and subjected to qualitative methods of analysis. Results indicated that the families’ experience can be conceptualized as a transition of fading away. The transition began with an ending, characterized by the processes of redefining and dealing with burden. A period of chaos, confusion, fear, and uncertainty characterized the neutral zone. The end point of the transition was a new beginning where families focused on living day-to-day and preparing for death.
The Last 48 Hours of Life
Authors: Lichter Ivan , Hunt Esther
Published: April 2019

Though patients usually die peacefully, problems may arise in the last period of a terminal illness. In the final days new symptoms may arise or there may be exacerbation or recurrence of symptoms previously well controlled. Two hundred consecutive hospice patients were studied. The incidence was noted of pain, dyspnea, moist breathing, nausea and vomiting, confusion, restlessness, jerking and twitching, difficulty in swallowing, incontinence and retention of urine, sweating, moaning and groaning, and loss of consciousness. Each symptom is considered and the results of the management employed are noted. Many of the features appearing in the last days of a terminal illness, especially cancer, can be attributed to organic brain disease consequent to metabolic disorder associated with multi-organ failure. An awareness of the nature of the problems that may arise in the last 48 hours of life makes it possible to keep the patient comfortable to the end.
Auditing the Hospital Care of Dying Patients
Authors: Latimer Elizabeth
Published: April 2019

It is essential that hospitals (both acute and chronic care) develop a means of determining the status of care to the dying patients and their families within the institution. This paper provides a description of the components of comprehensive care for the dying patient, based on the discipline of palliative/hospice care, and their incorporation into a specific audit tool designed for assessing the hospital care of such patients. An audit conducted in an acute care hospital is provided to illustrate the potential applications of the tool and the nature of the questions it can raise in forming a basis for staff education, resource planning, and directions for further inquiry.
Hypodermoclysis in Dehydrated Elderly Patients: Local Effects with and without Hyaluronidase
Authors: Constans Thierry , Dutertre Jean-Paul , Frogé Étienne
Published: April 2019

Dehydration is frequently encountered in elderly patients and hypodermoclysis is an alternative method of parenteral rehydration. Hyaluronidase is classically added to the solution infused subcutaneously. The local effects of hypodermoclysis with or without hyaluronidase were investigated by using a randomized double-blind study in 12 dehydrated elderly patients. Five hundred millilitres of a 5% glucose saline solution was infused subcutaneously in 2 hours in each thigh, (A) with and (B) without 250 U of hyaluronidase. Circumférence and temperature of each thigh were assessed before and after the infusion. Color was evaluated after the infusion. The gain in thigh circumference was less in the presence of hyaluronidase, but the other variables did not differ. The patients were thoroughly questioned about pain: no difference was noted between solutions A and B. We conclude that hyaluronidase adds no comfort that justifies its systematic use in the hypodermoclysis of glucose saline solutions.
Controversies in the Long-Term Management of Analgesic Therapy in Patients with Advanced Cancer
Authors: Portenoy Russell K. , Coyle Nessa
Published: April 2019

The management of pain in the patient with advanced cancer requires comprehensive assessment and expertise in the application of many therapeutic techniques. Given the complexity of the problems posed by these patients, it is not surprising that most aspects of palliative care derive from personal anecdote and clinical consensus, rather than well-defined guidelines based on research findings. In the absence of such guidelines, unresolved issues and controversies abound. This review discusses some of the most important of these topics, which range from the overall system of care and quality of assessment to the specifics of pharmacotherapy and other modalities of treatment. In so doing, the rationale for some of the accepted clinical approaches can be clarified, others that are as yet little known can be highlighted, and the issues most in need of further investigation can be defined.
A Patient Care Travelling Record for Palliative Care: A Feasibility Study
Authors: Latimer Elizabeth J. , Porterfield Patricia , Roberts Jacqueline G.
Published: April 2019

The provision of palliative care can be a complex process. Patients are treated in a variety of settings, by multiple persons, thus risking loss of continuity of care. These patients take numerous medications and require many complex treatment decisions in the course of their illness, making the ready availability of current and accurate information a vital component of effective care. The use of a patient care travelling health record, while requiring time and commitment from all parties to be effective, has been shown to be both feasible and helpful to patients, families, and health professionals. Considerable education and commitment is necessary to ensure compliance by all involved parties.
Is there Only one Right way to Die?
Authors: Roy David J.
Published: April 2019

“Our unspoken assumptions have the force of revelation” Seamus Heaney (1)
Ascribed Meaning: A Critical Factor in Coping and Pain Attenuation in Patients with Cancer-Related Pain
Authors: Barkwell Diana P.
Published: April 2019

Advanced cancer is frequently associated with severe pain, and some patients suffer markedly more than others. The experience of pain is a multifactorial phenomenon involving not only sensory but also cognitive, affective, motivational, and behavioral dimensions. The latter variables were investigated within the framework of Melzack and Wall's gate control model of pain and Lazarus’ coping psychology model. Quantitative measures of the McGill Pain Questionnaire, a self-report depression scale, and a coping strategy questionnaire were employed, and a face-to-face interview was conducted in which patients ascribed meaning to their pain. One hundred terminal cancer patients in the Winnipeg, Manitoba area were studied, all of whom received care at home, with one half having access to support from a hospital palliative care unit (PCU) and one half not. Analgesic medication levels were recorded and converted to a common standard. Statistical results showed that the ability to cope with the pain experience was little influenced by access to the PCU; nor was medication level a confounding variable. Variance analysis showed that the strongest impact on pain, depression, and coping scores was made by the meaning ascribed to pain by patients (p=0.0001). The most frequently ascribed meanings were challenge (n=30), punishment (n=26), and enemy (n=20). Successful pain attenuation thus depends in part on understanding the cognitive processing of pain by individual patients.
From Migration to Palliation: Uncharted Waters
Authors: Mcneil Carmelita
Published: April 2019

Attention to the unique health care needs of people who have immigrated to Canada should not wait until they are dying. The culture of the past and the reasons for migration are blended into their understanding of health care values and affect their response to interventions. Health professionals should understand that the family and the cultural community play a special role in the integration and acceptance of Canadian methods of care. Palliative home care nurses are participant-observers of the family ties to the past. They can share these observations with other health care workers.
What about Odor in Terminal Cancer?
Authors: Jacob Marie-Jeanne , Markstein Catherine , Liesse Marie-Madeleine , Deckers Christian
Published: April 2019

Daily care involving proximity with a malodorous patient in the terminal stage of cancer has often proved difficult for the caregiver. Whatever the cause of the primary cancer, three sources of noxious odor can exist or coexist: necrosis, superinfection, and perspiration and/or discharge. The proposed treatment calls for a twofold approach: internal or general and external or local. The internal treatment consists mainly of antibiotics and often involves the combined use of two drugs. Local treatment is applied “à la carte” according to the origin of the odors. Wounds, vomiting, diarrhea, and so on can be treated with specific treatments which will be discussed further.
Nursing Care Planning for Terminally Ill Cancer Patients Receiving Home Care
Authors: Peruselli Carlo , Camporesi Elena , Colombo A. Maria , Cucci Monica , Sironi P.G. , Bellodi Marco , Cirillo Romana , Love Elsa , Mariano Rita
Published: April 2019

Nursing home care for terminally ill cancer patients was organized according to nursing care plans that were based on diagnoses as recommended by the North American Nursing Diagnosis Association (NANDA). This study was carried out among a sample of 40 patients receiving home health care for a period of 1 to 19 weeks. More than 697 nursing diagnoses were identified in the study. The most frequently recorded nursing diagnoses were anxiety, constipation, and diminished food intake. Fifteen of the 40 patients in the study were able to complete a weekly self-report of their symptoms. The patients’ own descriptions of their symptoms were then compared with their symptoms as identified by nursing staff. There was a congruence in 63% of reported instances. Although nurses’ assessments were not always in agreement with the symptoms reported by the patients, agreement was more frequently found with somatic symptoms than with psychological ones. One conclusion is that nursing plans should incorporate multidimensional methods for assessing patients’ real needs.
Three Years Later: Grief, View of Life, and Personal Crisis after Death of a Family Member
Authors: Kallenberg Kjell , Söderfeldt Björn
Published: April 2019

In an initial study, 19 persons were interviewed during the first year after the sudden death of a family member. Seventeen were interviewed again three years after their bereavement. Participants were divided into four groups, representing patterns of crisis behavior: boundless, spontaneous, emerging, and suppressed grief. Characteristics of the four groups were still discernible after three years. Those with spontaneous and emerging grief grew to cope in similar ways. In the initial study, a close correlation had been found between personality, view of life, and response to crisis, respectively, an observation that still held true after three years. No specific doctrine or belief system could be linked to the coping process, but a connection did exist between view of life, as expressed through basic attitudes, and the grieving process.
Benchmarking: A Tool for Excellence in Palliative Care
Authors: Murray J. Alex , Murray Mary H.
Published: April 2019

Quietly and without fanfare, total quality management (TQM) is being implemented in a branch of health care where quality of care has particular impact on the patient's comfort and well-being. Some palliative care providers, dedicated to improving the quality of life for the dying, have fulfilled all the criteria to be contenders for prestigious quality honors like the Baldrige Award in the United States and the Canada Award for Excellence. Their secret is simple: the patient defines quality, and the palliative care team acts on that definition. Benchmarking, a TQM tool, allows institutions and organizations to benefit from sharing their best processes, and keeps the TQM continuous improvement cycle on track.
The Family in Hospital-Based Home Care with Special Reference to Terminally Ill Cancer Patients
Authors: Beck-Friis Barbro , Strang Peter
Published: April 2019

Eighty-seven next of kin, 80 spouses and seven adult children, were the primary caregivers of terminally ill patients (87% cancer patients) cared for at the hospital-based home care (HBHC) unit of Motala Hospital during 1989–1990. All of the patients died in their homes. Next of kin were asked to complete self-questionnaires and to give written comments on their experiences and their perception of how the patient had felt about 13 aspects of home care provided by the HBHC staff. The response rate was 94%. In nine out of 13 areas, such as adequate information at the time of referral about the HBHC, security, support, immediate extra help when needed, high quality of nursing, and care and pain control, 86%–97% of next of kin were very satisfied (7–9 on a 9-point scale); whereas information provided about the disease, economic support, and support given after death were very satisfactory according to 72%, 58%, and 80% of relatives, respectively. Gender and time from diagnosis to death did not seem to affect responses. Next of kin of cancer patients were generally more satisfied than next of kin of other terminally ill patients. A total time of care of more than 60 days (median time) was associated with significantly more positive responses. Older spouses were significantly more satisfied with the HBHC than younger ones; despite this, 99% of all next of kin would choose HBHC again in a similar situation. It is concluded that very satisfactory terminal home care can be achieved, but it presupposes effective, prompt support and symptom control, 24 hours per day, and that both patient and family wish to participate in the HBHC.
Which Antiemetic?
Authors: Lichter Ivan
Published: April 2019

The choice of antiemetic should not be arbitrary, but should be based on knowledge of the different pathways of the various stimuli that lead to nausea and vomiting and the neuroreceptors involved. The steps to be taken in choosing an appropriate antiemetic are described. They are (a) to establish the probable cause of the nausea and vomiting, (b) to consider the afferent pathways involved, (c) to define the neuroreceptors activated at each of these sites, (d) to select the group of antiemetics that antagonizes these neuroreceptors, and (e) to choose the most potent antiemetic with the fewest side effects in that group. Causes for failure to respond to a chosen antiemetic are considered and the action to be taken is described.
Suffering and its Relationship to Pain
Authors: Chapman C. Richard , Gavrin Jonathan
Published: April 2019

Pain is a complex, multidimensional perception with affective as well as sensory features. In part, it is a somatically focused negative emotion resembling perceived threat. Suffering refers to a perceived threat to the integrity of the self, helplessness in the face of that threat, and exhaustion of psychosocial and personal resources for coping. The concepts of pain and suffering therefore share negative emotion as a common ground. Examination of the central physiological mechanisms underlying pain, negative emotional arousal, and stress helps clarify the physiological basis of suffering and the causal influences of persistent pain and other stressors. Central mechanisms involve both limbic processing of aversive stimulation and disturbance of the hypothalamo-pituitary-adrenocortical axis with consequent biological disequilibrium. The palliative care specialist can address suffering proactively as well as reactively by treating potentially chronic pain and symptoms aggressively and promoting the psychosocial well-being of the patient at every opportunity.
Music Therapy: Variations on a Theme
Authors: Mandel Susan E.
Published: April 2019

Music therapists make significant contributions to the multidisciplinary hospice team in its efforts to provide holistic palliative care to terminally ill patients and family members and to promote quality of life. The role of a hospice music therapist is described, including providing direct patient music therapy service, training the hospice team in music therapy, developing and maintaining a music therapy resource centre, and offering bereavement services. A review of patient charts Provides information about patient age, sex, diagnosis, and source and reasons for referral.
Music Therapy Perspectives in Palliative Care Education
Authors: Porchet-Munro Susan
Published: April 2019

Major strides have been made in expanding the content of professional education in palliative care to include a focus on attitudes which nurture compassionate care as well as on knowledge and skills. However, accessing the emotional spheres — for instance the fear and helplessness of caregivers — remains a challenge. The inclusion of music therapy techniques as a teaching modality, with an emphasis on emotional experience and nonverbal expression, is suggested to address the latter and to enhance affective growth and learning.
Communicating with Brain-Impaired Palliative Care Patients through Music Therapy
Authors: O'Callaghan Clare C.
Published: April 2019

Language is mainly a function of the left hemisphere of the brain; music is mainly a function of the right hemisphere. Using language and music together therapeutically with brain-impaired patients offers a greater chance of activating intact neurological pathway than using language alone. Music therapy also offers an alternate and creative way of communicating with these patients.
Providing Relief from Cancer Pain by Assisting in the Search for Meaning
Authors: Ersek Mary , Ferrell Betty R.
Published: April 2019

Pain is a common, distressing symptom experienced by cancer patients and their family caregivers. An important aspect of coping with cancer pain is the ability to make meaning of the experience. This paper provides an overview of the literature related to meaning-making processes utilized by people experiencing cancer. It also presents an integrated approach to assisting patients and their family caregivers with the meaning-making process associated with cancer pain. Approaches to intervening are integrated within a model developed through previous research.
The Assessment and Prevalence of Affective Disorders in Advanced Cancer
Authors: Lynch Mary E.
Published: April 2019

The assessment of depression in patients with advanced cancer presents a difficult clinical challenge. Reported prevalence rates of depression in cancer patients range from 3.7% to 58%. Studies using structured diagnostic interviews and clearly defined diagnostic criteria are presented. The current literature suggests that among hospitalized cancer patients with significant levels of physical impairment at least 25% suffer from clinically important depression. Risk of suicide and recent literature regarding early wish to die are also discussed.
Is there Nothing between Us?
Authors: Roy David J.
Published: April 2019

“The assumption that everyone has someone to turn to when they are dying is a form of class prejudice.”

George Smith (1)
Restructuring the Principle of Medical Futility
Authors: Smith George P.
Published: April 2019

This essay surveys the need for a clear and objective definition of medical futility. It is urged that once agreement is obtained for structuring operational guidelines for determining futility, a three-tier decisional structure can fee developed for testing whether a given treatment falls within the scope of these guidelines. Under the first tier, the treating physician would be given the primary responsibility for making the determination to withhold treatment on the grounds of futility. While the physician would be under a duty not to prescribe treatment deemed futile, he would be obliged to inform the patient and his family of this decision, including the reasons for it, in order to allow, under the second tier, for an appeal to be taken by the patient or family to the hospital ethics committee. The third tier recognizes a right of limited appeal to the courts.
Bereavement Follow-Up: What do Palliative Support Teams Actually Do?
Authors: Bromberg Maria Helena , Higginson Irene
Published: April 2019

Care for the family and bereavement follow-up is considered part of good palliative practice. Risk assessment schedules and recommended methods of follow-up are available but the extent to which these are used in practice is not known. This study examines the bereavement follow-up to families and carers by five palliative support teams in England, UK. We report the bereavement follow-up provided and compare the responses of different teams. Data were collected on all patients using standardized records. This included patient and family details and the initial bereavement follow-up after the death. A total of 320 patients were cared for until death: 55% men, 45% women, mean age 64 years. All patients had cancer except one who had AIDS. Civil status was 64% married, 20% widowed, 5% divorced or separated, 9% single, and 2% other. 49% lived with one other person, 19% alone, and the remainder with two or more people. Spouses were the most significant carers at 62%. Bereavement follow-up was offered to 215 or 67% of families, but this varied greatly between the teams (10%-94%). Initial follow-up was made mainly by the nurses (78%). 50% of follow-ups were by visits, 45% by telephone contact, 3% by letter, and 1% other. Reasons for no follow-up included (a) no relatives 12%, (b) staff did not know the family well enough 29%, (c) carers lived outside the visiting area of the team 25%, (d) carers were judged as having no need 23%, (e) carers refused 1%, (e) other 4%, and (f) not recorded 5%. The results indicate the diversity of bereavement follow-up and suggest a need for training, clear protocols, and further research into the needs of families.
Platelet Transfusions in Advanced Hematological Malignancies: A Position Paper
Authors: Lassaunière Jean-Michel , Bertolino Mariela , Hunault Mathilde , Zittoun Robert , Verspieren Patrick , Moh-Klaren Julia , Jaulmes Dominique , Colombat Philippe
Published: April 2019

Treatment of patients with advanced-stage hematological malignancies (HM) includes frequent transfusions. Given present limited hospital budgets, administrative pressure is increasing on hematology services to limit the cost of these transfusions. An expert multidisciplinary panel involved in hematology formed a working party to draw up a series of proposals, including definitions of advanced stage disease and the indications for platelet transfusion. Their proposals included: (a) Platelet transfusions are indicated for the treatment of bleeding caused by low platelet counts; (b) Patients should receive full information, including the basic criteria for platelet transfusion; (c) Doctors should be trained to assess whether or not platelet transfusions are urgently required; and (d) The practice of home transfusions should be encouraged.
Dignity in Dying: A Preliminary Study of Patients in the Last Three Days of Life
Authors: Turner Kristen , Chye Richard , Aggarwal Ghauri , Philip Jennifer , Skeels Andrew , Lickiss J. Norelle
Published: April 2019

The final three days of life of 50 consecutive patients on a busy integrated palliative care service is described, with regard to final cause of death, symptom control, drug prescription, retention of personal function, and other measures possibly relevant to dignity in dying. Good symptom relief was maintained without rapid or high escalation of doses of morphine or sedatives. Personal function was maintained in at least a moderate degree in the majority of patients. This study also illustrates some of the difficulties in describing and evaluating the concept of “dying with dignity”.
Assessing Palliative Care Educational Needs of Physicians and Nurses: Results of a Survey
Authors: Samaroo Bethan
Published: April 2019

The Greater Victoria Hospital Society (GVHS) Palliative Care Committee surveyed medical and nursing staff from four hospitals and The Victoria Hospice Society in February, 1993. The purpose of the survey was to identify physicians’ and nurses’ perceived educational needs related to death and dying. Programs that focus on the dying process; patient pain, symptom, and comfort control; and patient and family support were identified as necessary to meet the educational needs of physicians and nurses in providing quality palliative care. Physicians and nurses identified communication skills as being paramount. Communications concerning ethical issues were highlighted as the most difficult to cope with.
Palliative Care Providers’ Perspectives on Service and Education Needs
Authors: Sellick Scott M. , Charles Karen , Dagsvik Joanne , Kelley Mary L.
Published: April 2019

To obtain the information necessary for coordinated regional program development, we examined (a) the multidisciplinary viewpoint of palliative care service provision and (b) the continuing education needs reported by non-physician service providers. Of 146 surveys distributed to care providers from multiple settings, 135 were returned. Respondents cited these problems: fragmented services, poor pain and symptom control, lack of education for providers, lack of public awareness, problems with the continuity and coordination of care, lack of respite, and lack of hospice beds. Stress management for caregivers, pain management, communication skills, and symptom assessment were rated as priorities in continuing education. Lectures, small group discussions, practicum, and regular medical centre rounds were the preferred learning formats, while costs and staff shortages were cited as educational barriers.
Family Members’ Perceptions of Palliative Cancer Care: Predictors of Family Functioning and Family Members’ Health
Authors: Kristjanson Linda J. , Sloan Jeff A. , Dudgeon Deborah , Adaskin Eleanor
Published: April 2019

We studied family members’ care experiences during the palliative care phase as predictors of family members’ health and family functioning during the palliative care phase and three months following the death of the patient. Eighty family members of advanced cancer patients participated in the study at time one (T1) (palliative care phase) and 64 family members completed the data collection protocol at time two (T2) (three months bereavement). Data were also obtained from 36 of the patients within one month of their deaths. Fulfillment theory accounted for 31% of the variance in family care satisfaction and Discrepancy theory accounted for 72% of the variance in family care satisfaction. Discrepancy theory predicted family functioning in the bereavement period (r=-0.33, p<0.05). Patients’ quality of life scores were moderately correlated with family members’ health during the palliative care phase (r=-0.38, p<0.05). Family members’ scores on the health index (symptom of stress scale) were significantly lower (p<0.05) than normative scores reported in a study using a healthy population. The strongest predictor of family members’ health scores in the bereavement period was their health score at T1 (r=0.71, p<0.01). As well, family functioning at T1 was strongly correlated with family functioning at T2.
How Long does it Take to Get a “Do not Resuscitate” Order?
Authors: Smith Thomas J. , Desch Christopher E. , Hackney Mary Helen , Shaw James E.
Published: April 2019

Less than 50% of physicians know the resuscitation wishes of their patients and only a small fraction of patients have completed “do not resuscitate” (DNR) orders before death. One of the common reasons given by physicians is that the process of “getting a DNR” takes too long, and some authorities have suggested that additional reimbursement is needed. The purpose of this study is to assess how long the DNR education and consent process actually takes in practice. Our study group was a convenience sample of consecutive patients seen by experienced oncologists in a community and academic practice setting. Physicians were asked to record the time spent in DNR discussions with patients, the outcomes, and their comments. DNR orders were obtained on 16 of 22 patients with a single interview lasting a mean time of 16 minutes. Additional DNR orders were obtained on two more patients after a second interview of 6 patients, mean time 17.5 minutes. After a third interview of 4 patients, mean time 23 minutes, only 2 of 22 patients would not allow DNR orders. Of these two, one died intubated in the intensive care unit and the other underwent continued unsuccessful induction therapy for acute leukemia before dying. Conclusion: DNR orders can be obtained on nearly all patients within the time frame of an inpatient or outpatient visit. Time is not the main obstacle to DNR discussions, and additional reimbursement for additional time is not necessary. A small subset of patients continue to refuse DNR orders. Physician and patient reluctance to broach the subject may be a bigger impediment than time.
Prolegomena to a Declaration
Authors: Roy David J.
Published: April 2019

“We agreed to death, but not to every kind.” Wislawa Szymborska (1)
Evaluation of an Interdisciplinary Training Program in Palliative Care: Addressing the Needs of Rural and Northern Communities
Authors: Kristjanson Linda , Dudgeon Deborah , Nelson Fred , Henteleff Paul , Balneaves Lynda
Published: April 2019

Our study was a pilot test of an interdisciplinary training program in palliative care to improve the quality of care to terminally ill cancer and AIDS patients in rural and northern communities in Manitoba. The program involved two weeks of intense palliative care training for nurses, social workers, physicians, and volunteers. Four teams were trained during a six-month period. A repeated measures design was used to assess the effectiveness of the program. Results indicated that health professionals’ knowledge about care of the dying, care of individuals with HIV/AIDS, and attitudes toward care of the dying improved upon completion of the training program and remained improved three months following the program. Improvements in use of medications, increased attention to family care, increased discussion of DNR orders, and increased consultation related to symptom management were evident following the training program. The parallel training program for volunteers was also judged to be effective.
Pain and the Choice to Hasten Death in Patients with Painful Metastatic Cancer
Authors: Sullivan Mark , Rapp Suzanne , Fitzgibbon Dermot , Chapman C. Richard
Published: April 2019

Unrelieved pain has been cited as an important reason why cancer patients may seek to hasten their deaths. We interviewed 48 patients with painful metastatic cancer to ascertain their interest in various active and passive modes of hastening death. Ninety percent of these patients supported the general right of terminally ill patients to passive modes of hastening death and 80% supported the right to active modes such as assisted suicide and euthanasia. If they developed severe pain that could not be relieved, 80% would instruct their physician write a “do not attempt resuscitation” order, 40%–50% would want to receive suicide information or a lethal prescription from their physician, and 34% would request a lethal injection from their physician. Current pain and depression levels were not associated with interest in hastening death, but current somatic symptom burden was significantly associated with this interest.
Assessment and Management of Medically Ill Patients who Refuse Life-Prolonging Treatments: Two Case Reports and Proposed Guidelines
Authors: Jenkins Catherine , Bruera Eduardo
Published: April 2019

Patients who have chosen to have treatment withdrawn because of debilitating conditions pose a special problem for palliative care. We report on two such patients: patient 1 refused amputation of a gangrenous leg and patient 2 refused food and hydration after a series of strokes. The management of these patients through the dying process is discussed and guidelines are suggested. The criteria for competency include both a general cognitive and psychiatric assessment as well as a specific evaluation of the patient's ability to make the treatment withdrawal decision. Treatable symptoms which impair the patient's quality of life and have an impact on the decision should be corrected. If a proxy decides to withdraw therapy in an incompetent patient, this decision should accord with the patient's known wishes and values as far as possible. The beneficence of the decision may be assessed according to the disease process, degree of suffering, and risks of accepting treatment. The complexity of these cases calls for a multidisciplinary approach, and the palliative care team should work in collaboration with the primary care treatment team.
Capacity to Choose Place of Residence: Autonomy vs Beneficence?
Authors: Strang David G. , Molloy D. William , Harrison Christine
Published: April 2019

Health care workers often perceive a conflict between autonomy and beneficence when dealing with clients living at risk in the community. Respect for personal freedom and the desire to help and protect vulnerable People frequently appear to demand opposite interventions. The assessment of decision-making capacity is a vital part of any process that deals with these complicated situations and can resolve some of the apparent conflict. Standardized assessment tools which are flexible enough to deal with the complexities of capacity assessment are needed. Health care workers aim to maximize the safety of People incapable of making decisions while protecting the freedom and autonomy of the capable. Some limits to autonomy must be accepted, especially where others’ interests are threatened.
Methods of Hydration in Palliative Care Patients
Authors: Steiner Nathalie , Bruera Eduardo
Published: April 2019

A strong and often polarized debate has taken place during recent years concerning the consequences of dehydration in the terminally ill patient. When a patient has a severely restricted oral intake or is found to be dehydrated, the decision to administer fluids should be individualized and made on the basis of a careful assessment that considers problems related to dehydration, potential risks and benefits of fluid replacement, and patients’ and families’ wishes. This review discusses the assessment of hydration status in the terminal cancer patient and the options for fluid administration in the cases where evaluation of the patients’ condition has led to this indication. These include different modes of hypodermoclysis, intravenous hydration, use of the nasogastric route, and proctoclysis. Arguments for and against rehydration have been previously addressed by other authors and fall outside the scope of this review.
Palliative Care at Home: Reflections on HIV/AIDS Family Caregiving Experiences
Authors: Stajduhar Kelli I. , Davies Betty
Published: April 2019

This study explored the day-to-day experiences of family members providing care at home for their dying loved one with HIV/AIDS. In-depth interviews with seven caregivers were analyzed using grounded theory qualitative methods. A conceptualization of the family caregiving experience portrays HIV/AIDS caregiving as an intense, emotional, and powerful experience filled with pride and enrichment, and conversely, with anger and disillusionment. Findings reflected a significant need for interventions designed to provide direct and effective support for family members caring for a loved one with HIV/AIDS.
A Profile of Bereaved Caregivers following Provision of Terminal Care
Authors: Wyatt Gwen K. , Friedman Laurie , Given Charles W. , Given Barbara A.
Published: April 2019

Caregivers are often overwhelmed by the strain of terminal caregiving. We wished to better understand the needs of terminal caregivers and to supply a basis for tailoring interventions to them during caregiving and early bereavement. This report provides a profile of 124 bereaved caregivers interviewed within three months of their patient's death. Three quarters were female and married to the patient. Four major areas were assessed: psycho-spiritual, personal-social, health status, and financial status. Caregivers reported higher than average depressive symptomatology (mean CES-D = 17.6), moderate levels of positive outlook, low negative reactions to caring, and relatively high levels of spirituality. Caregivers were highly involved in their patient's activities of daily living, providing an average of 10.8 hours/day of direct care and 8.9 hours/day of companionship. Caregivers reported low utilization of health services and relatively high personal health status. 45% of the sample reported lower income since the patient's death and 44% reported out-of-pocket expenses not covered by insurance. Suggestions for interventions that target emotional, physical, and financial concerns are discussed.
Health Outcomes for People who use Palliative Care Services
Authors: Devery Kim , Lennie Ian , Cooney Neil
Published: April 2019

Health outcomes are being promoted as a necessary evaluation measure in health care services. Less often discussed is the notion that health outcomes are artificially designated endpoints and that different people in the health system have different ideas of what the outcomes ought to be. Whose evidence is acceptable and relevant in constructing a framework of health outcomes in palliative care? This paper presents the findings of a research project undertaken in New South Wales, Australia, on health outcomes as evaluated by patients and caregivers. A wide range of health care professionals also participated. Patients and caregivers valued outcomes or endpoints in palliative care that were not necessarily brought about by expert clinical intervention. By adopting too narrow an interpretation of outcomes we risk sacrificing that which is uniquely valuable in palliative care services.
Palliative Care Services in the Community: What Do Family Doctors Want?
Authors: Higginson Irene
Published: April 2019

The views of family doctors on local specialist palliative care services such as hospices and home care teams and the needs of their patients were studied. Of 203 family doctors sent a questionnaire, 102 (50%) responded. Attempts were made to follow up a random sample of 42 non-responders by telephone interview. During the previous two years family doctors had referred a mean of 5.5 patients to inpatient specialist palliative care services. A further 4.7 patients had been referred to specialist palliative home care teams. During the same two years family doctors had cared for a mean of 2 patients during the terminal phase of illness without input from specialist palliative care services. Although many reports about the services were favorable, family doctors wished for improved communication and liaison from palliative care services, input for patients who did not have cancer, and improved out-of-hours access. The telephone survey of non-responders suggested that these doctors had lower levels of awareness of palliative care problems and services. The findings support the move by specialist palliative care services to extend their remit beyond cancer and to provide 24-hour care. They also signal a need for caution if primary care is to determine the development of palliative care.
Temporal Distribution of Deaths in Cancer Patients Admitted to a Palliative Care Unit
Authors: Neumann Catherine M. , Hanson John , Kuehn Norma , Bruera Eduardo
Published: April 2019

The timing of death has received much attention, particularly in the area of sudden cardiac death. Many studies have demonstrated that sudden cardiac death and other sudden deaths follow a circadian pattern. Deaths have also been reported to vary around dates that are especially meaningful to patients and families. To test these reported observations in a cancer palliative care population, we reviewed the date and time of death of 626 consecutive patients admitted to the palliative care unit of a western Canadian hospital. All patients were adults with advanced metastatic or locally recurrent cancer. A cir-cadian distribution in the time of deaths was observed; 225 deaths occurred between 20:00 and 06:00 (261 deaths expected) versus 401 deaths between 06:00 and 20:00 (365 deaths expected) (p=0.0037). The distribution of deaths did not change significantly according to day of the week or month of the year. Based on patient birthday, 41 deaths occurred during the three weeks before a birthday (33.5 deaths expected) versus 26 deaths during the three weeks after a birthday (33.5 deaths expected) (p=0.067). There appear to be fewer deaths during the evening and night; there does not appear to be a decline in deaths before the patient's birthday; and any temporal distribution of deaths in this population appears to be minimal.
What Constitutes High-Quality HIV/AIDS Palliative Care?
Authors: Armes P. Jo , Higginson Irene J.
Published: April 2019

The study assessed the components of high-quality HIV palliative care using the multidimensional model of quality assessment developed by Maxwell (4). Data collection consisted of interviews with individual subjects and focus groups. The interviews took place in three London health authorities. Seven service users and 74 providers of health care and voluntary services were interviewed. Maxwell's model identifies the components of high-quality HIV palliative care as: competent, skilled practitioners (effectiveness); confidential, non-discriminatory, and culturally sensitive care (acceptability); collaborative and coordinated care (efficiency); flexible and responsive care (access and relevance to need); and fair access for all clients (equity). Our results show that the six dimensions of quality appear to be inextricably linked from the client's point of view. Thus, service commissioners and providers need to examine all six of the dimensions when assessing the quality of HIV services. These findings may serve as a model for other palliative care services.
Breathable hydrogel dressings containing natural antioxidants for management of skin disorders
Authors: Comotto Mattia , Saghazadeh Saghi , Bagherifard Sara , Aliakbarian Bahar , Kazemzadeh-Narbat Mehdi , Sharifi Fatemeh , Mousavi Shaegh Seyed Ali , Arab-Tehrany Elmira , Annabi Nasim , Perego Patrizia , Khademhosseini Ali , Tamayol Ali
Published: April 2019

Traditional wound dressings are not effective enough to regulate the moisture content and remove excessive exudate from the environment. Wet wound dressings formed from hydrogels such as alginate are widely used in clinical practice for treatment of skin disorders. Here, we functionalize alginate dressings with natural antioxidants such as curcumin and t-resveratrol to render them both anti-inflammatory and antibacterial. The hydrogel maintains excellent mechanical properties and oxygen permeability over time. The release rate of the compounds from the hydrogels is assessed and their impact on bacterial and cellular growth is evaluated. The antioxidant compounds act as bactericidal agents and improve cell viability. The optimal concentration of active compounds in the engineered alginate-based dressings is determined.
Performance and Receiver Operating Characteristics of the Mini-Mental State Examination Instrument in Detecting Dementia in a Rapidly Aging Developing Country (Jamaica)
Authors: James Kenneth , Thompson Camelia , Willie-Tyndale Douladel , Holder Nevins Desmalee , Gibson Roger , Johnson Peter , McKoy Davis Julian , Eldemire-Shearer Denise
Published: April 2019

Objective:

To examine the performance of the Mini-Mental State Examination (MMSE) in community-dwelling older persons in a developing country (Jamaica) undergoing rapid population aging.

Methods:

An embedded validity study was conducted utilizing participants from a nationally representative sample of 2782 older persons. Standardized MMSE scores were obtained for study participants. A random selection of 170 persons with MMSE scores greater than 20 and 170 persons with scores 20 or less was done. Field staff were trained to apply the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, criteria for the diagnosis of dementia. In total, 300 participants (167 participants with MMSE score of 20 or less, 133 participants with scores greater than 20) were assessed and categorized according to dementia status. Performance characteristics of the MMSE tool were determined for study participants and appropriate adjustment and analyses subsequently applied to facilitate extrapolation to the nationally representative sample.

Results:

The mean MMSE scores for participants with score of 20 and less was 17.1 (standard deviation [SD] = 3.2) and 24.5 (SD = 2.8) for those with scores greater than 20. Dementia was identified in 34 participants. The receiver operating characteristic curve for MMSE scores in relation to dementia diagnosis had an area under the curve value of 0.935 (95% confidence interval, 0.893-0.977). The optimal MMSE cut-point was 18/19 and was consistently so regardless of age category, gender, educational level, and number of chronic illnesses.

Conclusion:

There is merit in using the MMSE examination as a screening tool for dementia in Jamaica. The findings of this study coupled with widespread use and familiarity among practitioners give credence to the MMSE as a reasonable screening tool for dementia in Jamaica—rapidly aging society.