Late follow-up of patients who underwent palliation for complex congenital heart disease in childhood.
Congenital heart disease, Mar 2008, vol. 3, no. 2, p. 155-8
Hoffmann-Andreas, Wyler-Felix, Guenthard-Joelle, Graedel-Erich.
Abstract
We report on a series of 12 patients with complex congenital heart disease who had reached adult life after surgical palliation in early childhood and who were systematically followed by clinical visits. Patients were born between 1953 and 1979 and were followed up into 2007. All patients had complex lesions with single ventricle physiology and were palliated either by banding of the pulmonary artery or by creation of systemic-pulmonary shunts. Single operations were performed in 4 cases, and 8 patients had 1 or more further palliative interventions. Late corrective surgery and heart transplantation were performed in 1 patient each. Eight survivors reached a mean age of 36 years at follow-up (range 28-48), whereas 4 patients died at a mean age of 32 years (range 22-53). All patients were in New York Heart Association classes II and III. Complications during follow-up were bacterial endocarditis (3), cerebrovascular accidents (3), arrhythmias (3), need for pacemakers (2). Deaths occurred perioperatively at transplant (1), or were caused by sudden death (2), and hypoxia related to fall in blood pressure (1). Successful pregnancies occurred in 3 patients with healthy (small) babies delivered by cesarean section in 2 of them, and vaginal delivery in 1. The course of life in these patients shows not only a wide spectrum with good quality of life in some of them but also a large number of potentially severe complications. Survival beyond 50 years is rare.
Thursday 26 June 2008
Aggressiveness of cancer-care near the end-of-life in Korea.
Aggressiveness of cancer-care near the end-of-life in Korea.
Japanese journal of clinical oncology, May 2008 (epub: 14 Apr 2008), vol. 38, no. 5, p. 381-6, Keam-Bhumsuk, Oh-Do-Youn, Lee-Se-Hoon, Kim-Dong-Wan et al
Abstract
OBJECTIVE: The aim of this study was to examine the appropriateness of chemotherapy and care in Korean cancer patients near the end-of- life. METHODS: We designed a retrospective cohort composed of patients diagnosed as having metastatic cancer and who received palliative chemotherapy at Seoul National University Hospital in 2002. Two hundred and ninety-eight patients who died of cancer were evaluated in terms of the appropriateness of the cancer-care they received, including chemotherapy. RESULTS: Median duration of chemotherapy was 6.02 months compared with 8.67 months for median overall survival. The median period between last chemotherapy and death was 2.02 months. Of the 298 patients, 50.3% received chemotherapy during the last 2 months of life. Furthermore, 17 patients (5.7%) died within 2 weeks after receiving chemotherapy. The proportion who visited an emergency room (ER) more than once during the last months of life was 33.6%, and the average number of ER visits after a diagnosis of cancer was 1.72. Only 9.1% of patients were referred to a hospice consultation service and only 11.7% of patients agreed with written DNR. CONCLUSIONS: Among patients who died of cancer, significant proportions were found to have received chemotherapy up to the end-of-life and to have visited ERs. Hospice referrals and discussions about DNR were not conducted well during the end-of-life period in Korea.
Japanese journal of clinical oncology, May 2008 (epub: 14 Apr 2008), vol. 38, no. 5, p. 381-6, Keam-Bhumsuk, Oh-Do-Youn, Lee-Se-Hoon, Kim-Dong-Wan et al
Abstract
OBJECTIVE: The aim of this study was to examine the appropriateness of chemotherapy and care in Korean cancer patients near the end-of- life. METHODS: We designed a retrospective cohort composed of patients diagnosed as having metastatic cancer and who received palliative chemotherapy at Seoul National University Hospital in 2002. Two hundred and ninety-eight patients who died of cancer were evaluated in terms of the appropriateness of the cancer-care they received, including chemotherapy. RESULTS: Median duration of chemotherapy was 6.02 months compared with 8.67 months for median overall survival. The median period between last chemotherapy and death was 2.02 months. Of the 298 patients, 50.3% received chemotherapy during the last 2 months of life. Furthermore, 17 patients (5.7%) died within 2 weeks after receiving chemotherapy. The proportion who visited an emergency room (ER) more than once during the last months of life was 33.6%, and the average number of ER visits after a diagnosis of cancer was 1.72. Only 9.1% of patients were referred to a hospice consultation service and only 11.7% of patients agreed with written DNR. CONCLUSIONS: Among patients who died of cancer, significant proportions were found to have received chemotherapy up to the end-of-life and to have visited ERs. Hospice referrals and discussions about DNR were not conducted well during the end-of-life period in Korea.
Medically assisted hydration for palliative care patients
Medically assisted hydration for palliative care patients.
Cochrane database of systematic reviews (Online), 2008 (epub), no. 2, p.
Good-P, Cavenagh-J, Mather-M, Ravenscroft-P.
Abstract
BACKGROUND: Many palliative care patients have reduced oral intake during their illness. The management of this can include the provision of medically assisted hydration with the aim of prolonging the length of life of a patient, improving their quality of life, or both. OBJECTIVES: To determine the effect of medically assisted hydration in palliative care patients on their quality and length of life. SEARCH STRATEGY: Studies were identified from searching CENTRAL, MEDLINE (1966 to 2008), EMBASE (1980 to 2008), CINAHL, CANCERLIT, Caresearch, Dissertation abstracts, SCIENCE CITATION INDEX and the reference lists of all eligible studies, key textbooks, and previous systematic reviews. The date of the latest search was February 2008. SELECTION CRITERIA: All relevant randomised controlled trials (RCTs) or prospective controlled studies of medically assisted hydration in palliative care patients. DATA COLLECTION AND ANALYSIS: Five relevant studies were identified. These included two RCTs (93 participants), and three prospective controlled trials (360 participants). These were assessed independently by two review authors for quality and validity. The small number of studies and the heterogeneity of the data meant that a quantitative analysis was not possible, so a description of the main findings was included only. MAIN RESULTS: One study found that sedation and myoclonus (involuntary contractions of muscles) were improved more in the intervention group (28 - hydration, 23 - placebo). Another study found that dehydration was significantly higher in the non-hydration group, but that some fluid retention symptoms (pleural effusion, peripheral oedema and ascites) were significantly higher in the hydration group (59 - hydration group, 167 - non -hydration group). The other three studies did not show significant differences in outcomes between the two groups. AUTHORS' CONCLUSIONS: There are insufficient good quality studies to make any recommendations for practice with regard to the use of medically assisted hydration in palliative care patients.
Cochrane database of systematic reviews (Online), 2008 (epub), no. 2, p.
Good-P, Cavenagh-J, Mather-M, Ravenscroft-P.
Abstract
BACKGROUND: Many palliative care patients have reduced oral intake during their illness. The management of this can include the provision of medically assisted hydration with the aim of prolonging the length of life of a patient, improving their quality of life, or both. OBJECTIVES: To determine the effect of medically assisted hydration in palliative care patients on their quality and length of life. SEARCH STRATEGY: Studies were identified from searching CENTRAL, MEDLINE (1966 to 2008), EMBASE (1980 to 2008), CINAHL, CANCERLIT, Caresearch, Dissertation abstracts, SCIENCE CITATION INDEX and the reference lists of all eligible studies, key textbooks, and previous systematic reviews. The date of the latest search was February 2008. SELECTION CRITERIA: All relevant randomised controlled trials (RCTs) or prospective controlled studies of medically assisted hydration in palliative care patients. DATA COLLECTION AND ANALYSIS: Five relevant studies were identified. These included two RCTs (93 participants), and three prospective controlled trials (360 participants). These were assessed independently by two review authors for quality and validity. The small number of studies and the heterogeneity of the data meant that a quantitative analysis was not possible, so a description of the main findings was included only. MAIN RESULTS: One study found that sedation and myoclonus (involuntary contractions of muscles) were improved more in the intervention group (28 - hydration, 23 - placebo). Another study found that dehydration was significantly higher in the non-hydration group, but that some fluid retention symptoms (pleural effusion, peripheral oedema and ascites) were significantly higher in the hydration group (59 - hydration group, 167 - non -hydration group). The other three studies did not show significant differences in outcomes between the two groups. AUTHORS' CONCLUSIONS: There are insufficient good quality studies to make any recommendations for practice with regard to the use of medically assisted hydration in palliative care patients.
Nursing philosophy Apr 2008, vol. 9, no. 2,
A reply to 'Spirituality and nursing: a reductionist approach' by John Paley.
p. 131-7; discussion 138-40
Pesut-Barbara.
Palliative care for people with Alzheimer's disease.
p. 110-20
Mahon-Margaret-M, Sorrell-Jeanne-M.
Abstract
The task of aligning the philosophical and clinical perspectives on ethics is a challenging one. Clinical practice informs philosophy, not merely by supplying cases, but through shaping and testing philosophical concepts in the reality of the clinical world. In this paper we explore several aspects of the relationship between the philosophical and the clinical within a framework of palliative care for people living with Alzheimer's disease. We suggest that health professionals have a moral obligation to question previous assumptions concerning the quality of life among people with Alzheimer's, and to address the question: does the concept of palliative care properly embrace people with severe dementia? We propose an ethic of palliative care for people with Alzheimer's that is based, not on the traditionally understood principle of autonomy, but on the need to listen to those living with the disease, acknowledging their profound loss of cognitive abilities, with a focus on preventing and relieving suffering, and improving the individual's quality of life.
A conversation on diverse perspectives of spirituality in nursing literature.
p. 98-109
Pesut-Barbara.
Abstract
Spirituality has long been considered a dimension of holistic palliative care. However, conceptualizations of spirituality are in transition in the nursing literature. No longer rooted within religion, spirituality is increasingly being defined by the universal search for meaning, connectedness, energy, and transcendence. To be human is to be spiritual. Some have argued that the concept of spirituality in the nursing literature has become so generic that it is no longer meaningful. A conceptualization that attempts to be all- encompassing of what it means to live a human life has a tendency to render invisible the differences that make life meaningful. For palliative patients in particular, a generic approach may obscure and relativize the important values and beliefs that inform the critical questions that many patients grapple with at end of life. A different approach to conceptualizing spirituality can be achieved through the use of typologies. Rather than obscuring difference, categories are constructed to illuminate how spirituality is understood within a diverse society and how those understandings might influence patient- provider relationships. What follows in this article is a dialogue illustrating one typology of spirituality constructed from a review of selected nursing literature. The hypothetical narrator and three participants, representing the positions of theism, monism, and humanism, discuss their understandings of spirituality and religion, and how those understandings influence the intersections between nursing ontology, epistemology, and spiritual care.
The dying person: an existential being until the end of life.
p. 89-97
Lavoie-Mireille, Blondeau-Danielle, De-Koninck-Thomas.
Abstract
This article explores the experience of death from the perspective of existential philosophy, for the purpose of finding ways to humanize end-of-life nursing care. A person in his or her final days is seen by the caregiver as a being seeking the continual creation of his human becoming, from the experience of sickness to death. From the moment the torment of suffering begins, a person needs a presence of humanistic professionalism that embraces the values of the nursing profession.
Human nature: a foundation for palliative care.
p. 77-88
Whelton-Beverly-J-B.
Abstract
The Aristotelian-Thomist philosopher holds that human intellectual knowledge is possible because of the order in the world and natural human capacities. It is the position of this paper that there is a shared human form or nature that unites all humanity as members of the same kind. Moral treatment is due to every human being because they are human, and is not based upon expression of abilities. Humans have substantial dynamic existence in the world, an existence which overflows in expressive relationships. As both patient and health professional are human, human nature forms the natural foundation of health care. This paper looks towards human nature for moral guidance. The therapeutic relationship is seen as a part of the interpersonal moral space formed by human relationality, which tends towards community - in this case, the healthcare system. The therapeutic relationship is also a source of moral responsibility, as illness makes the patient vulnerable, while knowledge and nursing capacities generate in the nurse a duty to care. Nursing theory serves to connect philosophical reflection and nursing practice. Imogene King's conceptual system and theory of Goal Attainment is the theory that follows from the perspective of human person being presented. This synthesis of philosophy and theory is developed with the goal of shedding light on healthcare decisions in palliative care. The article concludes with the acknowledgement that the complexity of contextualized individual decisions requires the insight and discipline of the moral practitioner, and provides some thoughts on how education, development, and refinement transform an individual into a nurse.
Philosophy and palliative care.
p. 75-6
Paley-John.
Editorial, Introductory-Journal-Article.
p. 131-7; discussion 138-40
Pesut-Barbara.
Palliative care for people with Alzheimer's disease.
p. 110-20
Mahon-Margaret-M, Sorrell-Jeanne-M.
Abstract
The task of aligning the philosophical and clinical perspectives on ethics is a challenging one. Clinical practice informs philosophy, not merely by supplying cases, but through shaping and testing philosophical concepts in the reality of the clinical world. In this paper we explore several aspects of the relationship between the philosophical and the clinical within a framework of palliative care for people living with Alzheimer's disease. We suggest that health professionals have a moral obligation to question previous assumptions concerning the quality of life among people with Alzheimer's, and to address the question: does the concept of palliative care properly embrace people with severe dementia? We propose an ethic of palliative care for people with Alzheimer's that is based, not on the traditionally understood principle of autonomy, but on the need to listen to those living with the disease, acknowledging their profound loss of cognitive abilities, with a focus on preventing and relieving suffering, and improving the individual's quality of life.
A conversation on diverse perspectives of spirituality in nursing literature.
p. 98-109
Pesut-Barbara.
Abstract
Spirituality has long been considered a dimension of holistic palliative care. However, conceptualizations of spirituality are in transition in the nursing literature. No longer rooted within religion, spirituality is increasingly being defined by the universal search for meaning, connectedness, energy, and transcendence. To be human is to be spiritual. Some have argued that the concept of spirituality in the nursing literature has become so generic that it is no longer meaningful. A conceptualization that attempts to be all- encompassing of what it means to live a human life has a tendency to render invisible the differences that make life meaningful. For palliative patients in particular, a generic approach may obscure and relativize the important values and beliefs that inform the critical questions that many patients grapple with at end of life. A different approach to conceptualizing spirituality can be achieved through the use of typologies. Rather than obscuring difference, categories are constructed to illuminate how spirituality is understood within a diverse society and how those understandings might influence patient- provider relationships. What follows in this article is a dialogue illustrating one typology of spirituality constructed from a review of selected nursing literature. The hypothetical narrator and three participants, representing the positions of theism, monism, and humanism, discuss their understandings of spirituality and religion, and how those understandings influence the intersections between nursing ontology, epistemology, and spiritual care.
The dying person: an existential being until the end of life.
p. 89-97
Lavoie-Mireille, Blondeau-Danielle, De-Koninck-Thomas.
Abstract
This article explores the experience of death from the perspective of existential philosophy, for the purpose of finding ways to humanize end-of-life nursing care. A person in his or her final days is seen by the caregiver as a being seeking the continual creation of his human becoming, from the experience of sickness to death. From the moment the torment of suffering begins, a person needs a presence of humanistic professionalism that embraces the values of the nursing profession.
Human nature: a foundation for palliative care.
p. 77-88
Whelton-Beverly-J-B.
Abstract
The Aristotelian-Thomist philosopher holds that human intellectual knowledge is possible because of the order in the world and natural human capacities. It is the position of this paper that there is a shared human form or nature that unites all humanity as members of the same kind. Moral treatment is due to every human being because they are human, and is not based upon expression of abilities. Humans have substantial dynamic existence in the world, an existence which overflows in expressive relationships. As both patient and health professional are human, human nature forms the natural foundation of health care. This paper looks towards human nature for moral guidance. The therapeutic relationship is seen as a part of the interpersonal moral space formed by human relationality, which tends towards community - in this case, the healthcare system. The therapeutic relationship is also a source of moral responsibility, as illness makes the patient vulnerable, while knowledge and nursing capacities generate in the nurse a duty to care. Nursing theory serves to connect philosophical reflection and nursing practice. Imogene King's conceptual system and theory of Goal Attainment is the theory that follows from the perspective of human person being presented. This synthesis of philosophy and theory is developed with the goal of shedding light on healthcare decisions in palliative care. The article concludes with the acknowledgement that the complexity of contextualized individual decisions requires the insight and discipline of the moral practitioner, and provides some thoughts on how education, development, and refinement transform an individual into a nurse.
Philosophy and palliative care.
p. 75-6
Paley-John.
Editorial, Introductory-Journal-Article.
Neuropsychiatric complications of commonly used palliative care drugs
Neuropsychiatric complications of commonly used palliative care drugs.
Full text available at BMJ Publishing Group for NHS
Postgraduate medical journal, Mar 2008, vol. 84, no. 989, p. 121-6; quiz 125, 82 refs
Jackson-N, Doherty-J, Coulter-S.
Abstract
For those facing progressive life limiting disease, symptoms across a range of systems can be problematic. Clinicians may find themselves prescribing from several classes of drugs to alleviate distressing problems and to maximise quality of life for patients. Many drugs used for symptom control in palliative care give rise to neuropsychiatric side effects as they affect the central nervous system either directly or indirectly. The common unwanted effects of these drugs are well known, but there are some important neuropsychiatric effects that physicians are less aware of. If unrecognised, these effects can generate considerable distress and unnecessary harm to patients. We aim to highlight some of the adverse neuropsychiatric effects which occur with commonly used drugs in palliative care. Antiemetics such as metoclopramide and haloperidol can cause significant levels of neuropsychiatric toxicity, as can opiates, antidepressants, anxiolytics and antipsychotics. The syndromes or entities that will be considered are delirium, drug induced parkinsonism, akathisia, serotonin syndrome and neuroleptic malignant syndrome. The intention is to alert clinicians to the iatrogenic complications which may ensue on prescribing drugs commonly used in the palliative care setting.
Full text available at BMJ Publishing Group for NHS
Postgraduate medical journal, Mar 2008, vol. 84, no. 989, p. 121-6; quiz 125, 82 refs
Jackson-N, Doherty-J, Coulter-S.
Abstract
For those facing progressive life limiting disease, symptoms across a range of systems can be problematic. Clinicians may find themselves prescribing from several classes of drugs to alleviate distressing problems and to maximise quality of life for patients. Many drugs used for symptom control in palliative care give rise to neuropsychiatric side effects as they affect the central nervous system either directly or indirectly. The common unwanted effects of these drugs are well known, but there are some important neuropsychiatric effects that physicians are less aware of. If unrecognised, these effects can generate considerable distress and unnecessary harm to patients. We aim to highlight some of the adverse neuropsychiatric effects which occur with commonly used drugs in palliative care. Antiemetics such as metoclopramide and haloperidol can cause significant levels of neuropsychiatric toxicity, as can opiates, antidepressants, anxiolytics and antipsychotics. The syndromes or entities that will be considered are delirium, drug induced parkinsonism, akathisia, serotonin syndrome and neuroleptic malignant syndrome. The intention is to alert clinicians to the iatrogenic complications which may ensue on prescribing drugs commonly used in the palliative care setting.
JAMA 11 Jun 2008, vol. 299, no. 22
Palliative care for patients with head and neck cancer: I would like a quick return to a normal lifestyle.
Full text available at American Medical Association
p. 2679
Markowitz-Amy-J, Rabow-Michael-W.
Comment, Journal-Article.
Comment on: JAMA. 2008 Apr 16; 299(15):1818-25.
The role of chemotherapy at the end of life: when is enough, enough?.
Full text available at American Medical Association
p. 2667-78
Harrington-Sarah-Elizabeth, Smith-Thomas-J.
Abstract
Patients face difficult decisions about chemotherapy near the end of life. Such treatment might prolong survival or reduce symptoms but cause adverse effects, prevent the patient from engaging in meaningful life review and preparing for death, and preclude entry into hospice. Palliative care and oncology clinicians should be logical partners in caring for patients with serious cancers for which symptom control, medically appropriate goal setting, and communication are paramount, but some studies have shown limited cooperation. We illustrate how clinicians involved in palliative care and oncology can more effectively work together with the story of Mr L, a previously healthy 56-year-old man, who wanted to survive his lung cancer at all costs. He lived 14 months with 3 types of chemotherapy, received chemotherapy just 6 days before his death, and resisted entering hospice until his prognosis and options were explicitly communicated. Approaches to communication about prognosis and treatment options and questions that patients may want to ask are discussed.
Full text available at American Medical Association
p. 2679
Markowitz-Amy-J, Rabow-Michael-W.
Comment, Journal-Article.
Comment on: JAMA. 2008 Apr 16; 299(15):1818-25.
The role of chemotherapy at the end of life: when is enough, enough?.
Full text available at American Medical Association
p. 2667-78
Harrington-Sarah-Elizabeth, Smith-Thomas-J.
Abstract
Patients face difficult decisions about chemotherapy near the end of life. Such treatment might prolong survival or reduce symptoms but cause adverse effects, prevent the patient from engaging in meaningful life review and preparing for death, and preclude entry into hospice. Palliative care and oncology clinicians should be logical partners in caring for patients with serious cancers for which symptom control, medically appropriate goal setting, and communication are paramount, but some studies have shown limited cooperation. We illustrate how clinicians involved in palliative care and oncology can more effectively work together with the story of Mr L, a previously healthy 56-year-old man, who wanted to survive his lung cancer at all costs. He lived 14 months with 3 types of chemotherapy, received chemotherapy just 6 days before his death, and resisted entering hospice until his prognosis and options were explicitly communicated. Approaches to communication about prognosis and treatment options and questions that patients may want to ask are discussed.
Palliative treatment of pancreatic cancer.
Palliative treatment of pancreatic cancer.
Journal of digestive diseases, Feb 2008, vol. 9, no. 1, p. 1-7, 35 refs
von-Wichert-Goetz, Seufferlein-Thomas, Adler-Guido.
Abstract
Despite numerous diagnostic possibilities the early diagnosis of pancreatic cancer is still an exemption. Only 10-15% of patients are diagnosed at a stage where the tumor is resectable. Thus, most patients are treated with a palliative intention at first diagnosis. Palliative treatment comprises different therapeutic modalities involving radiochemotherapy and conventional chemotherapy. Chemotherapy, in particular, has been challenged by several new concepts involving combination regimens and the addition of targeted therapies to conventional therapeutic regimens. This review offers a critical presentation of current concepts in the palliative treatment of pancreatic cancer, discussing the problems of each and pointing to the development of new therapeutic strategies.
Journal of digestive diseases, Feb 2008, vol. 9, no. 1, p. 1-7, 35 refs
von-Wichert-Goetz, Seufferlein-Thomas, Adler-Guido.
Abstract
Despite numerous diagnostic possibilities the early diagnosis of pancreatic cancer is still an exemption. Only 10-15% of patients are diagnosed at a stage where the tumor is resectable. Thus, most patients are treated with a palliative intention at first diagnosis. Palliative treatment comprises different therapeutic modalities involving radiochemotherapy and conventional chemotherapy. Chemotherapy, in particular, has been challenged by several new concepts involving combination regimens and the addition of targeted therapies to conventional therapeutic regimens. This review offers a critical presentation of current concepts in the palliative treatment of pancreatic cancer, discussing the problems of each and pointing to the development of new therapeutic strategies.
Truth-telling at the end of life
Truth-telling at the end of life: a pilot study on the perspective of patients and professional caregivers.
Patient education and counseling Apr 2008 (epub: 03 Jan 2008), vol. 71, no. 1, p. 52-6
Deschepper-Reginald, Bernheim-Jan-L, Vander-Stichele-Robert et al
Abstract
OBJECTIVE: To describe the attitudes towards truth-telling of both terminal patients and professional caregivers, and to determine their perceived barriers to full information exchange. METHODS: In-depth interviews with 17 terminal patients selected through GPs and staff members of Flemish palliative care centres, and 3 focus groups with different professional caregivers. Analysis was based on grounded theory. RESULTS: There was considerable variability in the preferences of patients regarding when and how they wanted to be informed of their diagnosis, prognosis, expected disease course and end-of-life decisions. Major ambivalence was observed regarding the degree to which patients wanted to hear 'the whole truth'. Patients and caregivers agreed that truth-telling should be a 'dosed and gradual' process. Several barriers to more complete and timely truth- telling were identified. CONCLUSION: The preferences of both patients and caregivers for step-by-step--and hence slow and limited-- information prevents terminal patients from reaching the level of information needed for informed end-of-life decision-making. PRACTICE IMPLICATIONS: The preference of patients and caregivers to 'dose' the truth may entail some risks, such as a 'Catch 22' situation in which both patients and caregivers wait for a signal from each other before starting a dialogue about impending death.
Patient education and counseling Apr 2008 (epub: 03 Jan 2008), vol. 71, no. 1, p. 52-6
Deschepper-Reginald, Bernheim-Jan-L, Vander-Stichele-Robert et al
Abstract
OBJECTIVE: To describe the attitudes towards truth-telling of both terminal patients and professional caregivers, and to determine their perceived barriers to full information exchange. METHODS: In-depth interviews with 17 terminal patients selected through GPs and staff members of Flemish palliative care centres, and 3 focus groups with different professional caregivers. Analysis was based on grounded theory. RESULTS: There was considerable variability in the preferences of patients regarding when and how they wanted to be informed of their diagnosis, prognosis, expected disease course and end-of-life decisions. Major ambivalence was observed regarding the degree to which patients wanted to hear 'the whole truth'. Patients and caregivers agreed that truth-telling should be a 'dosed and gradual' process. Several barriers to more complete and timely truth- telling were identified. CONCLUSION: The preferences of both patients and caregivers for step-by-step--and hence slow and limited-- information prevents terminal patients from reaching the level of information needed for informed end-of-life decision-making. PRACTICE IMPLICATIONS: The preference of patients and caregivers to 'dose' the truth may entail some risks, such as a 'Catch 22' situation in which both patients and caregivers wait for a signal from each other before starting a dialogue about impending death.
Barriers to referral to inpatient palliative care units in Japan
Barriers to referral to inpatient palliative care units in Japan: a qualitative survey with content analysis.
Supportive care in cancer Mar 2008 (epub: 21 Feb 2007), vol. 16, no. 3, p. 217-22
Miyashita-Mitsunori, Hirai-Kei, Morita-Tatsuya, Sanjo-Makiko, Uchitomi-Yosuke.
Abstract
OBJECTIVES: We investigated the barriers to referral to inpatient palliative care units (PCUs) through a qualitative study across various sources of information, including terminal cancer patients, their families, physicians, and nurses. MATERIALS AND METHODS: There were 63 participants, including 13 advanced cancer patients, 10 family members, 20 physicians, and 20 nurses in palliative care and acute care cancer settings from five regional cancer institutes in Japan. Semi-structured interviews were conducted regarding barriers to referral to PCU, and data were analyzed by content analysis method. RESULTS: A total of 21 barriers were identified by content analysis. The leading barriers were (1) a negative image of PCUs by patients and families (n = 39), (2) delay of termination of anti- cancer treatment by physicians in the general wards (n = 24), (3) unwillingness to end anti-cancer treatment and denial of the fatal nature of the disease by patients and families (n = 22), (4) patient's wish to receive care from familiar physicians and nurses (n = 20), and (5) insufficient knowledge of PCUs by medical staff in general wards (n = 17). CONCLUSIONS: To correct these unfavorable images and misconceptions of PCUs, it is important to eliminate the negative image of PCUs from the general population, patients, families, and medical staffs. In addition, early introduction of palliative care options to patients and communication skills training regarding breaking bad news are relevant issues for a smooth transition from anti-cancer treatment to palliative care.
Supportive care in cancer Mar 2008 (epub: 21 Feb 2007), vol. 16, no. 3, p. 217-22
Miyashita-Mitsunori, Hirai-Kei, Morita-Tatsuya, Sanjo-Makiko, Uchitomi-Yosuke.
Abstract
OBJECTIVES: We investigated the barriers to referral to inpatient palliative care units (PCUs) through a qualitative study across various sources of information, including terminal cancer patients, their families, physicians, and nurses. MATERIALS AND METHODS: There were 63 participants, including 13 advanced cancer patients, 10 family members, 20 physicians, and 20 nurses in palliative care and acute care cancer settings from five regional cancer institutes in Japan. Semi-structured interviews were conducted regarding barriers to referral to PCU, and data were analyzed by content analysis method. RESULTS: A total of 21 barriers were identified by content analysis. The leading barriers were (1) a negative image of PCUs by patients and families (n = 39), (2) delay of termination of anti- cancer treatment by physicians in the general wards (n = 24), (3) unwillingness to end anti-cancer treatment and denial of the fatal nature of the disease by patients and families (n = 22), (4) patient's wish to receive care from familiar physicians and nurses (n = 20), and (5) insufficient knowledge of PCUs by medical staff in general wards (n = 17). CONCLUSIONS: To correct these unfavorable images and misconceptions of PCUs, it is important to eliminate the negative image of PCUs from the general population, patients, families, and medical staffs. In addition, early introduction of palliative care options to patients and communication skills training regarding breaking bad news are relevant issues for a smooth transition from anti-cancer treatment to palliative care.
Wednesday 25 June 2008
Progress in Palliative Care 2008 Vol 16 Part 1
Progress in Palliative Care
Ten top tips for assessing and treating wounds
Laverty , D
Page: 3-4
The management of neuropathic pain in cancer
Searle , R . D . ; Bennett , M . I .
Page: 7-14
Pharmacological management of breathlessness in advanced disease
Abernethy , A . P . ; Uronis , H . E . ; Wheeler , J . L . ; Currow , D . C .
Page: 15-20
Management of xerostomia and salivary hypofunction
Hegarty , A . M . ; Hodgson , T . A .
Page: 21-30
Cough in palliative care
Fathi , H . ; Morice , A . H .
Page: 31-38
The management of family conflict in palliative care
Lichtenthal , W . G ; Kissane , D . W .
Page: 39-46
The management of anxiety in advanced disease
Lloyd - Williams , M ; Hughes , J . G .
Page: 47-50
Palliative sedation for the relief of refractory physical symptoms
Cherny , N . I
Page: 51-62
Ten top tips for assessing and treating wounds
Laverty , D
Page: 3-4
The management of neuropathic pain in cancer
Searle , R . D . ; Bennett , M . I .
Page: 7-14
Pharmacological management of breathlessness in advanced disease
Abernethy , A . P . ; Uronis , H . E . ; Wheeler , J . L . ; Currow , D . C .
Page: 15-20
Management of xerostomia and salivary hypofunction
Hegarty , A . M . ; Hodgson , T . A .
Page: 21-30
Cough in palliative care
Fathi , H . ; Morice , A . H .
Page: 31-38
The management of family conflict in palliative care
Lichtenthal , W . G ; Kissane , D . W .
Page: 39-46
The management of anxiety in advanced disease
Lloyd - Williams , M ; Hughes , J . G .
Page: 47-50
Palliative sedation for the relief of refractory physical symptoms
Cherny , N . I
Page: 51-62
BMC Palliative Care Vol 7 2008
Palliative care for cancer patients in a primary health care setting: Bereaved relatives' experience, a qualitative group interview study
Mette Asbjoern Neergaard ; Frede Olesen ; Anders Bonde Jensen and Jens Sondergaard
2008 ; VOL 7
Bmc Palliative Care From BioMed Central [PDF] [Abstract]
Page: 1
A comparative analysis of computer based hospice palliative care datasets in Canada
Craig E Kuziemsky and Francis Lau
2008 ; VOL 7
Bmc Palliative Care From BioMed Central [PDF] [Abstract]
Page: 6
Randomised controlled trial of a new palliative care service: compliance, recruitment and completeness of follow-up
Irene J Higginson ; Sam Hart ; Rachel Burman ; Eli Silber ; Tariq Saleem and Polly Edmonds
2008 ; VOL 7
Bmc Palliative Care From BioMed Central [PDF] [Abstract]
Page: 7
Mette Asbjoern Neergaard ; Frede Olesen ; Anders Bonde Jensen and Jens Sondergaard
2008 ; VOL 7
Bmc Palliative Care From BioMed Central [PDF] [Abstract]
Page: 1
A comparative analysis of computer based hospice palliative care datasets in Canada
Craig E Kuziemsky and Francis Lau
2008 ; VOL 7
Bmc Palliative Care From BioMed Central [PDF] [Abstract]
Page: 6
Randomised controlled trial of a new palliative care service: compliance, recruitment and completeness of follow-up
Irene J Higginson ; Sam Hart ; Rachel Burman ; Eli Silber ; Tariq Saleem and Polly Edmonds
2008 ; VOL 7
Bmc Palliative Care From BioMed Central [PDF] [Abstract]
Page: 7
The changing causal foundations of cancer-related symptom clustering
The changing causal foundations of cancer-related symptom clustering during the final month of palliative care: A longitudinal study
Karin Olson ; Leslie Hayduk ; Marilyn Cree ; Ying Cui ; Hue Quan ; John Hanson ; Peter Lawlor and Florian Strasser
2008 ; VOL 8
Bmc Medical Research Methodology From BioMed Central [PDF] [Abstract] (/2001 - /)
Page: 36
Karin Olson ; Leslie Hayduk ; Marilyn Cree ; Ying Cui ; Hue Quan ; John Hanson ; Peter Lawlor and Florian Strasser
2008 ; VOL 8
Bmc Medical Research Methodology From BioMed Central [PDF] [Abstract] (/2001 - /)
Page: 36
Is the qualitative research interview an acceptable medium for research with palliative care patients and carers ?
Is the qualitative research interview an acceptable medium for research with palliative care patients and carers ?
Marjolein Gysels ; Cathy Shipman and Irene J Higginson
2008 ; VOL 9
Bmc Medical Ethics From BioMed Central [PDF] [Abstract]
Page: 7
Abstract BACKGROUND: Contradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview. METHODS: A descriptive qualitative study. The data were collected in the context of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study. RESULTS: The interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible. CONCLUSION: The open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview.
Marjolein Gysels ; Cathy Shipman and Irene J Higginson
2008 ; VOL 9
Bmc Medical Ethics From BioMed Central [PDF] [Abstract]
Page: 7
Abstract BACKGROUND: Contradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview. METHODS: A descriptive qualitative study. The data were collected in the context of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study. RESULTS: The interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible. CONCLUSION: The open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview.
Supportive care in cancer Feb 2008 (epub: 10 Nov 2007) vol. 16 no. 2
Disclosing gaps between supportive and palliative care: the past 20 years.
p. 109-11
Smyth-John-F.
Quality of end-of-life treatment for cancer patients in general wards and the palliative care unit at a regional cancer center in Japan: a retrospective chart review.
p. 113-22
Sato-Kazuki, Miyashita-Mitsunori, Morita-Tatsuya, Sanjo-Makiko, Shima-Yasuo, Uchitomi-Yosuke.
Abstract
GOALS: In Japan, most cancer patients die in the hospital. The aim of this study was to assess the quality of end-of-life treatment for dying cancer patients in general wards and palliative care unit (PCU) . MATERIALS AND METHODS: A retrospective chart review study was conducted. The following data on cancer patients who died in general wards (N = 104) and PCU (N = 201) at a regional cancer center were collected: do-not-resuscitate (DNR) decisions, treatments in the last 48 h of life, and aggressiveness of cancer care for dying patients. MAIN RESULTS: DNR orders were documented for most patients (94% in general wards, 98% in PCU, p = 0.067) and families usually consented (97%, 97%, p = 0.307). Comparison of general wards with PCU showed that, in the last 48 h of life, significantly more patients in general wards received life-sustaining treatment (resuscitation, 3.8%, 0%, p = 0.001; mechanical ventilation, 4.8%, 0%, p = 0.004), large volume hydration (>1,000 ml/day, 67%, 10%, p < 0.001) with continuous administration (83%, 5%, p = 0.002) and fewer palliative care drugs (strong opioids, 68%, 92%, p < 0.001; corticosteroids, 49%, 70%, p < 0.001; nonsteroidal anti-inflammatory drugs, 34%, 85%, p < 0.001). Regarding aggressiveness of cancer care, patients received a new chemotherapy regimen within 30 days of death (3.0%), chemotherapy within 14 days of death (4.3%), and intensive care unit admission in the last month of life (3.3%). CONCLUSION: We found that families, not patients, consented to DNR, and life-sustaining treatments were appropriately withheld; however, patients on general wards received excessive hydration, and the use of palliative care drugs could be improved. Application of our findings can be used to improve clinical care in general wards.
p. 109-11
Smyth-John-F.
Quality of end-of-life treatment for cancer patients in general wards and the palliative care unit at a regional cancer center in Japan: a retrospective chart review.
p. 113-22
Sato-Kazuki, Miyashita-Mitsunori, Morita-Tatsuya, Sanjo-Makiko, Shima-Yasuo, Uchitomi-Yosuke.
Abstract
GOALS: In Japan, most cancer patients die in the hospital. The aim of this study was to assess the quality of end-of-life treatment for dying cancer patients in general wards and palliative care unit (PCU) . MATERIALS AND METHODS: A retrospective chart review study was conducted. The following data on cancer patients who died in general wards (N = 104) and PCU (N = 201) at a regional cancer center were collected: do-not-resuscitate (DNR) decisions, treatments in the last 48 h of life, and aggressiveness of cancer care for dying patients. MAIN RESULTS: DNR orders were documented for most patients (94% in general wards, 98% in PCU, p = 0.067) and families usually consented (97%, 97%, p = 0.307). Comparison of general wards with PCU showed that, in the last 48 h of life, significantly more patients in general wards received life-sustaining treatment (resuscitation, 3.8%, 0%, p = 0.001; mechanical ventilation, 4.8%, 0%, p = 0.004), large volume hydration (>1,000 ml/day, 67%, 10%, p < 0.001) with continuous administration (83%, 5%, p = 0.002) and fewer palliative care drugs (strong opioids, 68%, 92%, p < 0.001; corticosteroids, 49%, 70%, p < 0.001; nonsteroidal anti-inflammatory drugs, 34%, 85%, p < 0.001). Regarding aggressiveness of cancer care, patients received a new chemotherapy regimen within 30 days of death (3.0%), chemotherapy within 14 days of death (4.3%), and intensive care unit admission in the last month of life (3.3%). CONCLUSION: We found that families, not patients, consented to DNR, and life-sustaining treatments were appropriately withheld; however, patients on general wards received excessive hydration, and the use of palliative care drugs could be improved. Application of our findings can be used to improve clinical care in general wards.
The importance of palliative care in urology.
The importance of palliative care in urology.
Urologia internationalis 2008 (epub: 18 Jan 2008), vol. 80, no. 1, p. 13-8
Brierly-Robert-D, O-Brien-Tim-S.
Abstract
INTRODUCTION: The aim of this study was to identify patients with advanced urological cancer who may benefit from specialist palliative care and to quantify the number of these patients, characterize their problems and to see if their needs were being met. METHODS: The study was divided into two parts over 4-month periods centred on a hospital trust in the UK with a catchment population of 850,000. Urology in- patients were observed prospectively and out-patients were observed retrospectively. Patients were included if they had unresectable, locally advanced or metastatic urological cancer. Patients with prostate cancer were included if they had advanced disease with hormone relapse, defined as three successive rises in PSA. RESULTS: 881 admissions to the urology ward were reviewed. A total of 24 patients with terminal malignancy had 27 admissions. Two patients died during their admission. The average length of stay was 16.6 days. Only 5 patients underwent surgical intervention. The majority of patients had general systemic symptoms of advanced malignancy. 2,482 out-patient visits were reviewed where 69 patients with terminal malignancy received 82 outpatient consultations, representing approximately 10% of all cancer visits. Seventy-five percent of the patients had specific problems or were generally unwell as a result of their disease and would have benefited from specialist palliative care. The remaining 25% were well at the time of their visit, but potential psychosocial problems arising from coping with advancing terminal disease were not addressed. CONCLUSION: Patients requiring palliative care place a heavy burden on in- and out-patient services. There is a case for a palliative care physician to be closely involved in urological cancer teams. Urologists need to be trained in palliative care, as this comprises a significant volume of their work.
Urologia internationalis 2008 (epub: 18 Jan 2008), vol. 80, no. 1, p. 13-8
Brierly-Robert-D, O-Brien-Tim-S.
Abstract
INTRODUCTION: The aim of this study was to identify patients with advanced urological cancer who may benefit from specialist palliative care and to quantify the number of these patients, characterize their problems and to see if their needs were being met. METHODS: The study was divided into two parts over 4-month periods centred on a hospital trust in the UK with a catchment population of 850,000. Urology in- patients were observed prospectively and out-patients were observed retrospectively. Patients were included if they had unresectable, locally advanced or metastatic urological cancer. Patients with prostate cancer were included if they had advanced disease with hormone relapse, defined as three successive rises in PSA. RESULTS: 881 admissions to the urology ward were reviewed. A total of 24 patients with terminal malignancy had 27 admissions. Two patients died during their admission. The average length of stay was 16.6 days. Only 5 patients underwent surgical intervention. The majority of patients had general systemic symptoms of advanced malignancy. 2,482 out-patient visits were reviewed where 69 patients with terminal malignancy received 82 outpatient consultations, representing approximately 10% of all cancer visits. Seventy-five percent of the patients had specific problems or were generally unwell as a result of their disease and would have benefited from specialist palliative care. The remaining 25% were well at the time of their visit, but potential psychosocial problems arising from coping with advancing terminal disease were not addressed. CONCLUSION: Patients requiring palliative care place a heavy burden on in- and out-patient services. There is a case for a palliative care physician to be closely involved in urological cancer teams. Urologists need to be trained in palliative care, as this comprises a significant volume of their work.
Internationally, it is time to bridge the gap between primary and secondary healthcare services for the dying.
Internationally, it is time to bridge the gap between primary and secondary healthcare services for the dying.
Annals of the Academy of Medicine Singapore
Feb 2008, vol. 37, no. 2, p. 142-4
Murray-Scott-A, Kok-Jaan-Yang.
Abstract
Around two-thirds of people with incurable diseases in economically developed countries wish to die at home, but less than one-third succeed in doing so. Developing primary care-based services for the dying in the community is essential to reach and serve the whole population. Three typical trajectories or patterns of decline in the last year(s) of life have recently been described, and each of these may require different models of care to best meet the needs of patients. The palliative care approach must be urgently extended to patients with non-malignant conditions who have comparable concerns to and in some cases even greater and more prolonged unmet needs than cancer patients. Primary care professionals have the potential and ability to provide end-of-life care for most patients, given adequate training, resources and access to care facilities and specialist advice when needed. They are ideally placed to identify patients at diagnosis, hospital discharge or disease progression who might benefit from an early palliative care approach. In the UK, Australia and US, some important initiatives are gaining momentum to facilitate the delivery of primary palliative services. In Singapore, the involvement of family physicians in end-of-life care is very low. A local survey is currently being conducted to identify the challenges in getting more family physicians involved. Given adequate time and resources, community professionals throughout the world can provide effective, equitable, and accessible primary palliative care, and form a solid bridge of communication and support between primary and secondary care.
Annals of the Academy of Medicine Singapore
Feb 2008, vol. 37, no. 2, p. 142-4
Murray-Scott-A, Kok-Jaan-Yang.
Abstract
Around two-thirds of people with incurable diseases in economically developed countries wish to die at home, but less than one-third succeed in doing so. Developing primary care-based services for the dying in the community is essential to reach and serve the whole population. Three typical trajectories or patterns of decline in the last year(s) of life have recently been described, and each of these may require different models of care to best meet the needs of patients. The palliative care approach must be urgently extended to patients with non-malignant conditions who have comparable concerns to and in some cases even greater and more prolonged unmet needs than cancer patients. Primary care professionals have the potential and ability to provide end-of-life care for most patients, given adequate training, resources and access to care facilities and specialist advice when needed. They are ideally placed to identify patients at diagnosis, hospital discharge or disease progression who might benefit from an early palliative care approach. In the UK, Australia and US, some important initiatives are gaining momentum to facilitate the delivery of primary palliative services. In Singapore, the involvement of family physicians in end-of-life care is very low. A local survey is currently being conducted to identify the challenges in getting more family physicians involved. Given adequate time and resources, community professionals throughout the world can provide effective, equitable, and accessible primary palliative care, and form a solid bridge of communication and support between primary and secondary care.
National guidelines for palliative care: A roadmap for oncology nurses.
National guidelines for palliative care: A roadmap for oncology nurses.
Oncology Feb 2008, vol. 22, no. 2 Suppl Nurse Ed, p. 28-34; discussion 34-5
Ferrell-Betty, Virani-Rose.
Abstract
Patients with cancer have significant needs for palliative care, including pain and symptom management and psychosocial and spiritual support. The experience of cancer has an impact on family caregivers as well, and palliative care needs exist from diagnosis through survivorship and end-of-life care. Oncology nurses have opportunities to integrate palliative care into disease-focused care. Clinical practice guidelines developed by the National Consensus Project for Quality Palliative Care and preferred practices defined by the National Quality Forum serve as a framework to guide nurses in this area. These national guidelines can serve as a roadmap to develop clinical services that will serve patients and families.
Oncology Feb 2008, vol. 22, no. 2 Suppl Nurse Ed, p. 28-34; discussion 34-5
Ferrell-Betty, Virani-Rose.
Abstract
Patients with cancer have significant needs for palliative care, including pain and symptom management and psychosocial and spiritual support. The experience of cancer has an impact on family caregivers as well, and palliative care needs exist from diagnosis through survivorship and end-of-life care. Oncology nurses have opportunities to integrate palliative care into disease-focused care. Clinical practice guidelines developed by the National Consensus Project for Quality Palliative Care and preferred practices defined by the National Quality Forum serve as a framework to guide nurses in this area. These national guidelines can serve as a roadmap to develop clinical services that will serve patients and families.
Toward population-based indicators of quality end-of-life care: testing stakeholder agreement.
Toward population-based indicators of quality end-of-life care: testing stakeholder agreement.
Cancer, 15 May 2008 vol. 112, no. 10, p. 2301-8
Grunfeld-Eva, Urquhart-Robin, Mykhalovskiy-Eric et al
Abstract
BACKGROUND: Quality indicators (QIs) are tools designed to measure and improve quality of care. The objective of this study was to assess stakeholder acceptability of QIs of end-of-life (EOL) care that potentially were measurable from population-based administrative health databases. METHODS: After a literature review, the authors identified 19 candidate QIs that potentially were measurable through administrative databases. A modified Delphi methodology, consisting of multidisciplinary panels of cancer care health professionals in Nova Scotia and Ontario, was used to assess agreement on acceptable QIs of EOL care (n = 21 professionals; 2 panels per province). Focus group methodology was used to assess acceptability among patients with metastatic breast cancer (n = 16 patients; 2 groups per province) and bereaved family caregivers of women who had died of metastatic breast cancer (n = 8 caregivers; 1 group per province). All sessions were audiotaped, transcribed verbatim, and audited, and thematic analyses were conducted. RESULTS: Through the Delphi panels, 10 QIs and 2 QI subsections were identified as acceptable indicators of quality EOL care, including those related to pain and symptom management, access to care, palliative care, and emergency room visits. When Delphi panelists did not agree, the principal reasons were patient preferences, variation in local resources, and benchmarking. In the focus groups, patients and family caregivers also highlighted the need to consider preferences and local resources when examining quality EOL care. CONCLUSIONS: The findings of this study should be considered when developing quality monitoring systems. QIs will be most useful when stakeholders perceive them as measuring quality care.
Cancer, 15 May 2008 vol. 112, no. 10, p. 2301-8
Grunfeld-Eva, Urquhart-Robin, Mykhalovskiy-Eric et al
Abstract
BACKGROUND: Quality indicators (QIs) are tools designed to measure and improve quality of care. The objective of this study was to assess stakeholder acceptability of QIs of end-of-life (EOL) care that potentially were measurable from population-based administrative health databases. METHODS: After a literature review, the authors identified 19 candidate QIs that potentially were measurable through administrative databases. A modified Delphi methodology, consisting of multidisciplinary panels of cancer care health professionals in Nova Scotia and Ontario, was used to assess agreement on acceptable QIs of EOL care (n = 21 professionals; 2 panels per province). Focus group methodology was used to assess acceptability among patients with metastatic breast cancer (n = 16 patients; 2 groups per province) and bereaved family caregivers of women who had died of metastatic breast cancer (n = 8 caregivers; 1 group per province). All sessions were audiotaped, transcribed verbatim, and audited, and thematic analyses were conducted. RESULTS: Through the Delphi panels, 10 QIs and 2 QI subsections were identified as acceptable indicators of quality EOL care, including those related to pain and symptom management, access to care, palliative care, and emergency room visits. When Delphi panelists did not agree, the principal reasons were patient preferences, variation in local resources, and benchmarking. In the focus groups, patients and family caregivers also highlighted the need to consider preferences and local resources when examining quality EOL care. CONCLUSIONS: The findings of this study should be considered when developing quality monitoring systems. QIs will be most useful when stakeholders perceive them as measuring quality care.
Cancer nursing, Jan-Feb 2008, vol. 31, no. 1
Knowledge, attitudes, and behavioral intentions of nurses toward providing artificial nutrition and hydration for terminal cancer patients in Taiwan.
p. 67-76,
Ke-Li-Shan, Chiu-Tai-Yuan, Lo-Su-Shun, Hu-Wen-Yu.
Abstract
The aim of this study was to understand present knowledge, attitudes, and behavioral intentions of clinical nurses providing artificial nutrition and hydration (ANH) for terminal cancer patients. Study subjects were composed of 197 nurses from the gastroenterology, general surgery, and intensive care units of Taipei Veterans General Hospital in Taiwan. Subjects were surveyed between April and June 2005 via self-developed structural questionnaires. Collected data were descriptively analyzed with SPSS 11.0 software. Nurses' knowledge about palliative care was high (accurate-answer rate, 96.75%); knowledge about providing ANH for terminal cancer patients was lower (accurate-answer rate, 53.67%). Although nurses' attitudes about providing ANH for terminal cancer patients viewed ANH as having more burdens (mean (SD), 14.12 (3.62)) than benefits (6.35 (2.19)), nurses' behavioral intentions still favored providing ANH (3.21 (0.95)). In subjective norms, attending physicians and/or superiors (45.3%) and, secondarily, patients (38.4%) were important influencing persons on nurses' support for ANH. Other influencing factors were communication difficulties with patients and/or family members (3.40 (0.83)), staff disagreements (3.01 (0.78)), and fear of medical dispute (3.42 (0.95)). Study results suggest that reinforcing in- service education to enhance nurses' knowledge of providing ANH for terminal cancer patients and building up positive attitudes and behavioral intentions may strengthen nurses' efforts to actively communicate and cooperate with physicians in assisting patients and families to make the most appropriate medical decisions.
Distress and quality of life concerns of family caregivers of patients undergoing palliative surgery.
p. 2-10
Author(s)
Juarez-Gloria, Ferrell-Betty, Uman-Gwen, Podnos-Yale, Wagman- Lawrence-D.
Abstract
There has been limited research in the field of palliative care and even far less focus on the area of palliative surgery. Although patient needs are paramount, family caregivers require information and support at the time surrounding surgery for advanced disease. The aim of this prospective cohort study of family caregivers of patients with advanced malignancies was to measure the impact of palliative surgery on dimensions of quality of life (QOL) for these family members. Family caregivers completed assessment tools preoperatively and at approximately 3 weeks and 2 and 3 months postoperatively. Parameters of physical, psychological, social, and spiritual QOL were measured on a scale of 0 (poor) to 10 (good) using the City of Hope QOL-Family instrument. Caregivers recorded their general distress on the Distress Thermometer using a scale of 0 (none) to 10 (severe). Analysis of the data revealed that family caregivers had disruptions similar to patients in physical, psychological, social, and spiritual dimensions of QOL. Findings suggest that caregivers should be assessed for distress and QOL concerns both before and after surgery for patients with advanced malignancies. Although caregiver concerns cannot always be eradicated, resources and interventions to support family caregivers are vital to improving QOL.
p. 67-76,
Ke-Li-Shan, Chiu-Tai-Yuan, Lo-Su-Shun, Hu-Wen-Yu.
Abstract
The aim of this study was to understand present knowledge, attitudes, and behavioral intentions of clinical nurses providing artificial nutrition and hydration (ANH) for terminal cancer patients. Study subjects were composed of 197 nurses from the gastroenterology, general surgery, and intensive care units of Taipei Veterans General Hospital in Taiwan. Subjects were surveyed between April and June 2005 via self-developed structural questionnaires. Collected data were descriptively analyzed with SPSS 11.0 software. Nurses' knowledge about palliative care was high (accurate-answer rate, 96.75%); knowledge about providing ANH for terminal cancer patients was lower (accurate-answer rate, 53.67%). Although nurses' attitudes about providing ANH for terminal cancer patients viewed ANH as having more burdens (mean (SD), 14.12 (3.62)) than benefits (6.35 (2.19)), nurses' behavioral intentions still favored providing ANH (3.21 (0.95)). In subjective norms, attending physicians and/or superiors (45.3%) and, secondarily, patients (38.4%) were important influencing persons on nurses' support for ANH. Other influencing factors were communication difficulties with patients and/or family members (3.40 (0.83)), staff disagreements (3.01 (0.78)), and fear of medical dispute (3.42 (0.95)). Study results suggest that reinforcing in- service education to enhance nurses' knowledge of providing ANH for terminal cancer patients and building up positive attitudes and behavioral intentions may strengthen nurses' efforts to actively communicate and cooperate with physicians in assisting patients and families to make the most appropriate medical decisions.
Distress and quality of life concerns of family caregivers of patients undergoing palliative surgery.
p. 2-10
Author(s)
Juarez-Gloria, Ferrell-Betty, Uman-Gwen, Podnos-Yale, Wagman- Lawrence-D.
Abstract
There has been limited research in the field of palliative care and even far less focus on the area of palliative surgery. Although patient needs are paramount, family caregivers require information and support at the time surrounding surgery for advanced disease. The aim of this prospective cohort study of family caregivers of patients with advanced malignancies was to measure the impact of palliative surgery on dimensions of quality of life (QOL) for these family members. Family caregivers completed assessment tools preoperatively and at approximately 3 weeks and 2 and 3 months postoperatively. Parameters of physical, psychological, social, and spiritual QOL were measured on a scale of 0 (poor) to 10 (good) using the City of Hope QOL-Family instrument. Caregivers recorded their general distress on the Distress Thermometer using a scale of 0 (none) to 10 (severe). Analysis of the data revealed that family caregivers had disruptions similar to patients in physical, psychological, social, and spiritual dimensions of QOL. Findings suggest that caregivers should be assessed for distress and QOL concerns both before and after surgery for patients with advanced malignancies. Although caregiver concerns cannot always be eradicated, resources and interventions to support family caregivers are vital to improving QOL.
Development of palliative care and legalisation of euthanasia: antagonism or synergy?
Development of palliative care and legalisation of euthanasia: antagonism or synergy?
Full text available at BMJ Publishing Group for NHS
BMJ (Clinical research ed.), 19 Apr 2008, vol. 336, no. 7649, p. 864-7
Bernheim-Jan-L, Deschepper-Reginald, Distelmans-Wim, Mullie-Arsene, Bilsen-Johan, Deliens-Luc.
Full text available at BMJ Publishing Group for NHS
BMJ (Clinical research ed.), 19 Apr 2008, vol. 336, no. 7649, p. 864-7
Bernheim-Jan-L, Deschepper-Reginald, Distelmans-Wim, Mullie-Arsene, Bilsen-Johan, Deliens-Luc.
Cancer Nursing Mar-Apr 2008, vol. 31, no. 2
Intimacy and sexuality after cancer: a critical review of the literature.
p. E9-17, 83 refs
Hordern-Amanda.
Abstract
Experiencing a diagnosis of cancer may dramatically alter the way a person feels about themselves, their body, and their significant relationships with others at sexual and intimate levels. The purpose of this article is to provide a critical analysis of the way patient sexuality and intimacy has been constructed throughout cancer and palliative care literature. A critique of 3 well-cited communication frameworks for health professionals: the PLISSIT, ALARM, and BETTER models, will be offered. In summary, a dominant emphasis throughout the literature explores the narrow relationship between cancer treatments and the impact of those treatments on patient sexual function or dysfunction, so that patient sexuality and intimacy are inextricably limited to fertility, contraception, menopausal, erectile functional, or capacity for intercourse. Few studies explore sexual or intimate issues that have arisen in the face of life- threatening illness, particularly when patients are older than 65 years. Despite being well cited during the past 30 years, the PLISSIT and ALARM counseling models are outdated in terms of more reflective, patient-centered, and negotiated forms of communication promoted throughout clinical practice guidelines and patient feedback in qualitative research. The BETTER communication model provides a significant step in assessing and documenting the patient's experience of sexuality after cancer.
End-of-life care for terminal head and neck cancer patients.
p. E40-6
Sesterhenn-Andreas-M, Folz-Benedikt-J, Bieker-Michael, Teymoortash- Afshin, Werner-Jochen-A.
Abstract
The objective of this study was to describe end-stage disease in patients suffering from advanced head and neck cancer (hnc). It is one of the most unpleasant and agonizing way a person may die and is a challenging problem for all involved with its treatment. Until today, only few detailed information about the final phase of life of hnc patients in a hospice setting are available. The design of this study was a cohort sample. The course of disease until death was thoroughly analyzed. In addition, hospice staff was interviewed. The study was conducted in a hospice setting (University Hospital). The charts of 16 patients suffering from end-stage hnc were evaluated. The median survival time in the hospice was 19.5 days. There, a more or less rapid deterioration of disease was evident. Several nurses sometimes felt extremely distressed after confrontation with the advanced disease stages. Partially, the situations for the nursing staff were unbearable because of visible, odorous, and fungating tumors or metastasis. The final days were characterized by restlessness followed by somnolence and resulting in an irreversible coma. The goal of palliative treatment of terminal hnc patients is offering the most convenient way to live the final days of their lives in dignity. The short survival time in hospice indicates that incurable patients may be referred to terminal care institutions too late in their dying trajectory. Physicians should be encouraged to talk to their terminally ill patients about the status and incurability of the disease as early as possible to facilitate patient and family decision making on how to prepare for the impending end of life.
p. E9-17, 83 refs
Hordern-Amanda.
Abstract
Experiencing a diagnosis of cancer may dramatically alter the way a person feels about themselves, their body, and their significant relationships with others at sexual and intimate levels. The purpose of this article is to provide a critical analysis of the way patient sexuality and intimacy has been constructed throughout cancer and palliative care literature. A critique of 3 well-cited communication frameworks for health professionals: the PLISSIT, ALARM, and BETTER models, will be offered. In summary, a dominant emphasis throughout the literature explores the narrow relationship between cancer treatments and the impact of those treatments on patient sexual function or dysfunction, so that patient sexuality and intimacy are inextricably limited to fertility, contraception, menopausal, erectile functional, or capacity for intercourse. Few studies explore sexual or intimate issues that have arisen in the face of life- threatening illness, particularly when patients are older than 65 years. Despite being well cited during the past 30 years, the PLISSIT and ALARM counseling models are outdated in terms of more reflective, patient-centered, and negotiated forms of communication promoted throughout clinical practice guidelines and patient feedback in qualitative research. The BETTER communication model provides a significant step in assessing and documenting the patient's experience of sexuality after cancer.
End-of-life care for terminal head and neck cancer patients.
p. E40-6
Sesterhenn-Andreas-M, Folz-Benedikt-J, Bieker-Michael, Teymoortash- Afshin, Werner-Jochen-A.
Abstract
The objective of this study was to describe end-stage disease in patients suffering from advanced head and neck cancer (hnc). It is one of the most unpleasant and agonizing way a person may die and is a challenging problem for all involved with its treatment. Until today, only few detailed information about the final phase of life of hnc patients in a hospice setting are available. The design of this study was a cohort sample. The course of disease until death was thoroughly analyzed. In addition, hospice staff was interviewed. The study was conducted in a hospice setting (University Hospital). The charts of 16 patients suffering from end-stage hnc were evaluated. The median survival time in the hospice was 19.5 days. There, a more or less rapid deterioration of disease was evident. Several nurses sometimes felt extremely distressed after confrontation with the advanced disease stages. Partially, the situations for the nursing staff were unbearable because of visible, odorous, and fungating tumors or metastasis. The final days were characterized by restlessness followed by somnolence and resulting in an irreversible coma. The goal of palliative treatment of terminal hnc patients is offering the most convenient way to live the final days of their lives in dignity. The short survival time in hospice indicates that incurable patients may be referred to terminal care institutions too late in their dying trajectory. Physicians should be encouraged to talk to their terminally ill patients about the status and incurability of the disease as early as possible to facilitate patient and family decision making on how to prepare for the impending end of life.
European journal of cancer care Jan 2008 vol. 17 no. 1
Opioid use in dying patients in hospice and hospital, with and without specialist palliative care team involvement.
p. 65-71
Brown-W.
Abstract
Newspapers claim that patients in hospices have their opioid doses increased to a point at which doctors know that they will die. However, research has produced conflicting results about whether hospice patients receive higher doses of opioids. This study investigated the differences in opioid prescribing between cancer patients dying in hospice and hospital with and without hospital palliative care team (HPCT) involvement and non-cancer patients dying in hospital, in Dundee, UK. The only statistically significant difference in the mean dose of opioids was that the cancer patients were prescribed and received higher doses of opioids than non-cancer patients. There was no statistically significant difference in the mean dose of opioids prescribed to and given to the different groups of cancer patients dying in different settings, indicating that the claims of the press are untrue. The cancer patients dying in hospital who were not on the HPCT records more commonly received Tramadol, which may indicate a reluctance of hospital doctors to move from weak opioids to strong opioids.
Methodological issues related to assessing and measuring quality of life in patients with cancer: implications for patient care.
p. 56-64
McCabe-C, Begley-C, Collier-S, McCann-S.
Abstract
Consideration of quality-of-life issues by all members of the healthcare team is essential in caring for people with cancer. In cancer research, quality of life is generally classified as health- related quality of life or individual quality of life. This paper discusses the instruments used to measure quality-of-life outcomes, and the relevance of such findings for healthcare staff in planning and providing effective and patient-centred care. Visual analogue scales (VASs) and questionnaires are commonly used to measure quality of life; however, both types of instruments are criticized because the content may not be relevant to individual patients, and do not distinguish differences between statistical and clinical significances in the findings. Using a combination of questionnaires and VASs may overcome some of these criticisms. In order to interpret the difference between statistical and clinical significance of findings and the associated implications for patient care, a mixed- methods approach to data collection is recommended in quality-of-life studies. This provides meaning and understanding to the quantitative data and individual perspectives on patients' experiences of having cancer. Information from such studies may also be more effective in helping healthcare staff identify relevant issues when planning cancer care services at individual, local and national level.
p. 65-71
Brown-W.
Abstract
Newspapers claim that patients in hospices have their opioid doses increased to a point at which doctors know that they will die. However, research has produced conflicting results about whether hospice patients receive higher doses of opioids. This study investigated the differences in opioid prescribing between cancer patients dying in hospice and hospital with and without hospital palliative care team (HPCT) involvement and non-cancer patients dying in hospital, in Dundee, UK. The only statistically significant difference in the mean dose of opioids was that the cancer patients were prescribed and received higher doses of opioids than non-cancer patients. There was no statistically significant difference in the mean dose of opioids prescribed to and given to the different groups of cancer patients dying in different settings, indicating that the claims of the press are untrue. The cancer patients dying in hospital who were not on the HPCT records more commonly received Tramadol, which may indicate a reluctance of hospital doctors to move from weak opioids to strong opioids.
Methodological issues related to assessing and measuring quality of life in patients with cancer: implications for patient care.
p. 56-64
McCabe-C, Begley-C, Collier-S, McCann-S.
Abstract
Consideration of quality-of-life issues by all members of the healthcare team is essential in caring for people with cancer. In cancer research, quality of life is generally classified as health- related quality of life or individual quality of life. This paper discusses the instruments used to measure quality-of-life outcomes, and the relevance of such findings for healthcare staff in planning and providing effective and patient-centred care. Visual analogue scales (VASs) and questionnaires are commonly used to measure quality of life; however, both types of instruments are criticized because the content may not be relevant to individual patients, and do not distinguish differences between statistical and clinical significances in the findings. Using a combination of questionnaires and VASs may overcome some of these criticisms. In order to interpret the difference between statistical and clinical significance of findings and the associated implications for patient care, a mixed- methods approach to data collection is recommended in quality-of-life studies. This provides meaning and understanding to the quantitative data and individual perspectives on patients' experiences of having cancer. Information from such studies may also be more effective in helping healthcare staff identify relevant issues when planning cancer care services at individual, local and national level.
Dementia care. Part 3: end-of-life care for people with advanced dementia
Dementia care. Part 3: end-of-life care for people with advanced dementia.
Full text available at Ebsco CINAHL Athens
British journal of nursing
Mar 13-26 2008, vol. 17, no. 5, p. 308-14
Ouldred-Emma, Bryant-Catherine.
Abstract
End-of-life care issues for people with advanced dementia have only recently been addressed in guidance. There appear to be barriers to accessing good palliative care for people in the terminal phase of the disease. The reasons for this are multifactorial, but may be attributed to factors such as dementia not being recognized as a terminal disease like cancer, problems in recognizing the symptoms of terminal dementia, and decision-making conflicts between family caregivers and other health and social care providers. This article highlights common symptoms of advanced dementia, and the need for a palliative care approach. It also addresses specific issues in both caring for people with dementia at the end of their lives and in supporting carers.
Full text available at Ebsco CINAHL Athens
British journal of nursing
Mar 13-26 2008, vol. 17, no. 5, p. 308-14
Ouldred-Emma, Bryant-Catherine.
Abstract
End-of-life care issues for people with advanced dementia have only recently been addressed in guidance. There appear to be barriers to accessing good palliative care for people in the terminal phase of the disease. The reasons for this are multifactorial, but may be attributed to factors such as dementia not being recognized as a terminal disease like cancer, problems in recognizing the symptoms of terminal dementia, and decision-making conflicts between family caregivers and other health and social care providers. This article highlights common symptoms of advanced dementia, and the need for a palliative care approach. It also addresses specific issues in both caring for people with dementia at the end of their lives and in supporting carers.
Journal of Palliative Care Spring 2008 vol. 24 no. 1
Link to journal issue
Development of a palliative care education program in rural long-term care facilities.
p. 60; author reply 60-1
Denholm-Margaret-J.
Comment, Letter.
Comment on: J Palliat Care. 2007 Autumn; 23(3):154-62.
Advanced chronic obstructive pulmonary disease: impact on informal caregivers.
p. 49-54, 59 refs
Simpson-A-Catherine, Rocker-Graeme-M.
Abstract
Patients with advanced COPD experience significant functional decline and often incapacitating dyspnea towards the terminal stages. Their families may also experience a parallel decline in psychological and physical functioning, and informal caregivers are often the invisible victims of this progressive and incurable disease. As we move toward new and more comprehensive models of care for patients, these models should embrace the needs of those who witness and suffer from the relentless struggle of patients to cope with worsening dyspnea, and the broad range of associated fears and anxieties that are so prevalent in the advanced stages of COPD.
Pediatric palliative care online: the views of health care professionals.
p. 41-8, 41 refs
Ens-Carla-D-L, Chochinov-Harvey-M, Berard-Josette-L-M, Harlos-Mike-S, Stenekes-Simone-J, Wowchuk-Suzanne-M.
Abstract
The purpose of the study was to evaluate the role of an online resource for dying children, their family members, and health care providers from the perspective of pediatric palliative care experts. Semistructured interviews with 12 leaders in pediatric palliative care in North America were conducted, exploring their perceptions and attitudes towards various aspects of Web-based resources for dying children and their care providers. Informants felt that an online resource may allow for a different form of expression, a connection between people undergoing a rare event, and an increase in education and support. Major challenges, such as accessibility, monitoring, and remaining current, would be ongoing. Other key themes included access, information, and anonymity. The data suggest that developing Web-based resources for dying young patients and their families may have merit. Should this take place, a feasibility study will be necessary to further determine the value of such a Web site for these vulnerable populations.
Improving end-of-life care through community-based grassroots collaboration: development of the Chinese-American Coalition for Compassionate Care.
p. 31-40
Chou-Wen-Ying-Sylvia, Stokes-Sandy-Chen, Citko-Judy, Davies-Betty.
Abstract
As a volunteer-formed, community-based organization devoted to improving the quality of end-of-life care for Chinese Americans, the new Chinese-American Coalition for Compassionate Care (CACCC) is a unique and promising venture. This article has several aims: 1) to describe the history and development of the recently founded CACCC; 2) to introduce and critically evaluate one of CACCC's first public programs, a volunteer and caregiver training on end-of-life care, which prompted subsequent programs and activities; 3) to report on CACCC's current projects and short- and long-term goals; and 4) to discuss the implications for other similar community-based organizations devoted to the health and quality of life of a targeted population.
Pediatric palliative care: a qualitative study of physicians' perspectives in a tertiary care university hospital.
p. 26-30
St-Laurent-Gagnon-Therese, Carnevale-Franco-A, Duval-Michel.
Abstract
The objective of this study was to assess the concept of palliative care for a group of physicians in a tertiary care pediatric university hospital. Grounded theory methodology was used. Data included 12 semistructured interviews, field notes, research consent forms, research protocols, and articles published by the participants. Physicians involved in both research and clinical care of severely ill children were interviewed. Data analysis identified three principal themes. First, physicians limited their concept of palliative care to the relief of physical symptoms, equating palliative care with comfort care. Second, there was variation regarding the appropriate moment to introduce palliative care for children. Finally, many physicians were not comfortable using the term palliative care. Although this study was conducted in one Canadian centre, the results raise questions that should be examined in other settings. A vague concept of palliative care may delay the provision of palliative care to children.
Lived experiences of Canadian women with metastatic breast cancer in preparation for their death: a qualitative study. Part II--enabling and inhibiting factors; the paradox of death preparation.
p. 16-25
Chunlestskul-Kanoknuch, Carlson-Linda-E, Koopmans-Janice-P, Angen- Maureen.
Abstract
OBJECTIVES: This study examined the essence of lived experiences of a sample of women with metastatic breast cancer in preparing themselves for their own death, with the goal of informing health provider interventions that support an acceptance of and preparation for death. METHODS: A phenomenological qualitative approach was used. Five women with metastatic breast cancer were interviewed on two occasions. Themes were analyzed, described, and validated, until saturation was met. Qualitative outcomes of the thematic analysis related to the enabling and inhibiting factors involved in preparing for one's own death. RESULTS: Factors that enabled and inhibited death preparation tasks in these women included: personal past death experiences; the availability of time and a place to think, learn, and work on death preparation activities; a chance to connect with others in similar situations; and personal and cultural attitudes towards death. Gaps and unmet needs within the health care system were identified. Finally, the paradoxical nature of various aspects of death preparation was highlighted. CONCLUSIONS: Death preparation can be accomplished through enhancing supportive care from health care professionals, with beneficial outcomes for patients and families. Nurses should be conscious of the paradoxical nature of death preparation, and help women to confront and manage these.
Lived experiences of Canadian women with metastatic breast cancer in preparation for their death: a qualitative study. Part I-- preparations and consequences.
p. 5-15
Chunlestskul-Kanoknuch, Carlson-Linda-E, Koopmans-Janice-P, Angen- Maureen.
Abstract
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.
Listen to the voices of poverty!
p. 3-4
Roy-David-J.
Editorial.
Development of a palliative care education program in rural long-term care facilities.
p. 60; author reply 60-1
Denholm-Margaret-J.
Comment, Letter.
Comment on: J Palliat Care. 2007 Autumn; 23(3):154-62.
Advanced chronic obstructive pulmonary disease: impact on informal caregivers.
p. 49-54, 59 refs
Simpson-A-Catherine, Rocker-Graeme-M.
Abstract
Patients with advanced COPD experience significant functional decline and often incapacitating dyspnea towards the terminal stages. Their families may also experience a parallel decline in psychological and physical functioning, and informal caregivers are often the invisible victims of this progressive and incurable disease. As we move toward new and more comprehensive models of care for patients, these models should embrace the needs of those who witness and suffer from the relentless struggle of patients to cope with worsening dyspnea, and the broad range of associated fears and anxieties that are so prevalent in the advanced stages of COPD.
Pediatric palliative care online: the views of health care professionals.
p. 41-8, 41 refs
Ens-Carla-D-L, Chochinov-Harvey-M, Berard-Josette-L-M, Harlos-Mike-S, Stenekes-Simone-J, Wowchuk-Suzanne-M.
Abstract
The purpose of the study was to evaluate the role of an online resource for dying children, their family members, and health care providers from the perspective of pediatric palliative care experts. Semistructured interviews with 12 leaders in pediatric palliative care in North America were conducted, exploring their perceptions and attitudes towards various aspects of Web-based resources for dying children and their care providers. Informants felt that an online resource may allow for a different form of expression, a connection between people undergoing a rare event, and an increase in education and support. Major challenges, such as accessibility, monitoring, and remaining current, would be ongoing. Other key themes included access, information, and anonymity. The data suggest that developing Web-based resources for dying young patients and their families may have merit. Should this take place, a feasibility study will be necessary to further determine the value of such a Web site for these vulnerable populations.
Improving end-of-life care through community-based grassroots collaboration: development of the Chinese-American Coalition for Compassionate Care.
p. 31-40
Chou-Wen-Ying-Sylvia, Stokes-Sandy-Chen, Citko-Judy, Davies-Betty.
Abstract
As a volunteer-formed, community-based organization devoted to improving the quality of end-of-life care for Chinese Americans, the new Chinese-American Coalition for Compassionate Care (CACCC) is a unique and promising venture. This article has several aims: 1) to describe the history and development of the recently founded CACCC; 2) to introduce and critically evaluate one of CACCC's first public programs, a volunteer and caregiver training on end-of-life care, which prompted subsequent programs and activities; 3) to report on CACCC's current projects and short- and long-term goals; and 4) to discuss the implications for other similar community-based organizations devoted to the health and quality of life of a targeted population.
Pediatric palliative care: a qualitative study of physicians' perspectives in a tertiary care university hospital.
p. 26-30
St-Laurent-Gagnon-Therese, Carnevale-Franco-A, Duval-Michel.
Abstract
The objective of this study was to assess the concept of palliative care for a group of physicians in a tertiary care pediatric university hospital. Grounded theory methodology was used. Data included 12 semistructured interviews, field notes, research consent forms, research protocols, and articles published by the participants. Physicians involved in both research and clinical care of severely ill children were interviewed. Data analysis identified three principal themes. First, physicians limited their concept of palliative care to the relief of physical symptoms, equating palliative care with comfort care. Second, there was variation regarding the appropriate moment to introduce palliative care for children. Finally, many physicians were not comfortable using the term palliative care. Although this study was conducted in one Canadian centre, the results raise questions that should be examined in other settings. A vague concept of palliative care may delay the provision of palliative care to children.
Lived experiences of Canadian women with metastatic breast cancer in preparation for their death: a qualitative study. Part II--enabling and inhibiting factors; the paradox of death preparation.
p. 16-25
Chunlestskul-Kanoknuch, Carlson-Linda-E, Koopmans-Janice-P, Angen- Maureen.
Abstract
OBJECTIVES: This study examined the essence of lived experiences of a sample of women with metastatic breast cancer in preparing themselves for their own death, with the goal of informing health provider interventions that support an acceptance of and preparation for death. METHODS: A phenomenological qualitative approach was used. Five women with metastatic breast cancer were interviewed on two occasions. Themes were analyzed, described, and validated, until saturation was met. Qualitative outcomes of the thematic analysis related to the enabling and inhibiting factors involved in preparing for one's own death. RESULTS: Factors that enabled and inhibited death preparation tasks in these women included: personal past death experiences; the availability of time and a place to think, learn, and work on death preparation activities; a chance to connect with others in similar situations; and personal and cultural attitudes towards death. Gaps and unmet needs within the health care system were identified. Finally, the paradoxical nature of various aspects of death preparation was highlighted. CONCLUSIONS: Death preparation can be accomplished through enhancing supportive care from health care professionals, with beneficial outcomes for patients and families. Nurses should be conscious of the paradoxical nature of death preparation, and help women to confront and manage these.
Lived experiences of Canadian women with metastatic breast cancer in preparation for their death: a qualitative study. Part I-- preparations and consequences.
p. 5-15
Chunlestskul-Kanoknuch, Carlson-Linda-E, Koopmans-Janice-P, Angen- Maureen.
Abstract
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.
Listen to the voices of poverty!
p. 3-4
Roy-David-J.
Editorial.
Impact of palliative gastrectomy in patients with incurable advanced gastric cancer
Impact of palliative gastrectomy in patients with incurable advanced gastric cancer.
Anticancer research, Mar-Apr 2008, vol. 28, no. 2B, p. 1309-15
Kunisaki-Chikara, Makino-Hirochika, Takagawa-Ryo et al
Abstract
BACKGROUND: The efficacy of palliative gastrectomy for incurable advanced gastric cancer remains debatable. PATIENTS AND METHODS: The study group comprised a series of 164 patients who had undergone palliative gastrectomy. Survival and prognostic factors were evaluated by univariate and multivariate analyses. RESULTS: The median survival time was 9 months. Univariate analysis identified the following as factors that adversely affected survival: larger and deeper undifferentiated tumors; peritoneal, hematogenous, or remaining lymph-node metastasis; a large number of non-curative factors; less extensive lymph-node dissection; and an absence of chemotherapy. The Cox proportional regression hazard model recognized histological type, hematogenous metastasis, peritoneal metastasis and chemotherapy as independent factors. Moreover, the number of non- curative factors independently affected the disease-specific survival. In patients with a single non-curative factor, histological type and adjuvant chemotherapy were independent prognostic factors. CONCLUSION: A randomized controlled study should be conducted in advanced gastric cancer patients with a single non-curative factor to confirm the usefulness of palliative gastrectomy followed by chemotherapy shown here.
Anticancer research, Mar-Apr 2008, vol. 28, no. 2B, p. 1309-15
Kunisaki-Chikara, Makino-Hirochika, Takagawa-Ryo et al
Abstract
BACKGROUND: The efficacy of palliative gastrectomy for incurable advanced gastric cancer remains debatable. PATIENTS AND METHODS: The study group comprised a series of 164 patients who had undergone palliative gastrectomy. Survival and prognostic factors were evaluated by univariate and multivariate analyses. RESULTS: The median survival time was 9 months. Univariate analysis identified the following as factors that adversely affected survival: larger and deeper undifferentiated tumors; peritoneal, hematogenous, or remaining lymph-node metastasis; a large number of non-curative factors; less extensive lymph-node dissection; and an absence of chemotherapy. The Cox proportional regression hazard model recognized histological type, hematogenous metastasis, peritoneal metastasis and chemotherapy as independent factors. Moreover, the number of non- curative factors independently affected the disease-specific survival. In patients with a single non-curative factor, histological type and adjuvant chemotherapy were independent prognostic factors. CONCLUSION: A randomized controlled study should be conducted in advanced gastric cancer patients with a single non-curative factor to confirm the usefulness of palliative gastrectomy followed by chemotherapy shown here.
Clinical problems at the end of life in a Swedish population
Clinical problems at the end of life in a Swedish population, including the role of advancing age and physical and cognitive function.
Full text available at Ebsco CINAHL Athens
Scandinavian journal of public health, Mar 2008, vol. 36, no. 2, p. 177-82
Jakobsson-Eva, Gaston-Johansson-Fannie, Ohlen-Joakim, Bergh-Ingrid.
Abstract
AIMS: To improve the understanding of specific clinical problems at the end of life, including the role of advancing age, physical function and cognitive function. METHODS: The study is part of an explorative survey of data relevant to end-of-life healthcare services during the last 3 months of life of a randomly selected sample of the population of a Swedish county. Data were selected through retrospective reviews of death certificates and medical records, and comprise information from 12 municipalities and 229 individuals. RESULTS: A range of prevalent concerns was found. Overall deterioration, urinary incontinence, constipation, impaired skin integrity, anxiety and sleep disturbances were significantly associated with dependency on others for activities of daily living; pulmonary rattles and swallowing disturbances were associated with cognitive disorientation; excepting cough, advancing age did not have significant impacts on these prevalent clinical concerns. CONCLUSIONS: A range of distressing conditions constitute a common pathway for many individuals at or near the end of life. The incorporation of health promotion as a principle of palliative care will probably benefit individuals at the end of life, and includes a proactive focus and emphasis on enhanced well-being at the time of diagnosis of a life-threatening illness. For individuals with physical and cognitive limitations imparting a state of dependency, it is reasonable to provide assurance of care for individuals' specific needs by professionals with both training for and competence in this special and sometimes unique clinical environment.
Full text available at Ebsco CINAHL Athens
Scandinavian journal of public health, Mar 2008, vol. 36, no. 2, p. 177-82
Jakobsson-Eva, Gaston-Johansson-Fannie, Ohlen-Joakim, Bergh-Ingrid.
Abstract
AIMS: To improve the understanding of specific clinical problems at the end of life, including the role of advancing age, physical function and cognitive function. METHODS: The study is part of an explorative survey of data relevant to end-of-life healthcare services during the last 3 months of life of a randomly selected sample of the population of a Swedish county. Data were selected through retrospective reviews of death certificates and medical records, and comprise information from 12 municipalities and 229 individuals. RESULTS: A range of prevalent concerns was found. Overall deterioration, urinary incontinence, constipation, impaired skin integrity, anxiety and sleep disturbances were significantly associated with dependency on others for activities of daily living; pulmonary rattles and swallowing disturbances were associated with cognitive disorientation; excepting cough, advancing age did not have significant impacts on these prevalent clinical concerns. CONCLUSIONS: A range of distressing conditions constitute a common pathway for many individuals at or near the end of life. The incorporation of health promotion as a principle of palliative care will probably benefit individuals at the end of life, and includes a proactive focus and emphasis on enhanced well-being at the time of diagnosis of a life-threatening illness. For individuals with physical and cognitive limitations imparting a state of dependency, it is reasonable to provide assurance of care for individuals' specific needs by professionals with both training for and competence in this special and sometimes unique clinical environment.
When should we define the response rates in the treatment of bone metastases by palliative radiotherapy?
When should we define the response rates in the treatment of bone metastases by palliative radiotherapy?
Clinical oncology (Royal College of Radiologists (Great Britain) Feb 2008 (epub: 05 Nov 2007)vol. 20, no. 1, p. 83-9
Li-K-K, Hadi-S, Kirou-Mauro-A, Chow-E.
Abstract
AIMS: It is well established that palliative radiotherapy provides effective pain relief for symptomatic bone metastases, but controversy remains regarding the optimal dose fractionation. Several meta-analyses and systematic reviews of trials comparing the efficacy of single vs multiple fractionated radiotherapy schedules noted that it is difficult to reach a consensus when inconsistent response end point definitions are used. The purpose of this study was to determine when the most appropriate time to evaluate a response is. MATERIALS AND METHODS: Patients with symptomatic bone metastases treated with palliative radiotherapy between May 2003 and June 2005 were enrolled in the study. They were assessed with the Brief Pain Inventory at baseline, 1, 2 and 3 months after radiotherapy. Analgesic consumption during the preceding 24h was recorded and converted into an equivalent total daily dose of oral morphine. The response to radiotherapy was assessed using the International Bone Metastases Consensus end point definitions at 1, 2 and 3 months of follow-up. RESULTS: One hundred and ninety-nine patients were treated with palliative radiotherapy. All pain scores and functional interference items improved after radiotherapy. The proportion of evaluable patients with a complete response or a partial response increased between 1 month (58%) and 3 months of follow-up (67%). However, when considering intention-to-treat percentages, which take attrition into consideration, overall response rates dropped from 35% at 1 month, to 32% at 2 months, and finally 24% at 3 months. CONCLUSION: We conclude that 2 months after radiotherapy is the most appropriate time point to measure response rates for two reasons: (i) the maximum pain relief for some patients may take more than 4 weeks to achieve and (ii) attrition poses a major problem when response rates are measured at a later date. Future trials should use standardised criteria for end points to facilitate comparison and analysis across clinical trials. Given the limitations of this study, however, further investigations are needed to confirm the response time points for palliative cancer patients.
Clinical oncology (Royal College of Radiologists (Great Britain) Feb 2008 (epub: 05 Nov 2007)vol. 20, no. 1, p. 83-9
Li-K-K, Hadi-S, Kirou-Mauro-A, Chow-E.
Abstract
AIMS: It is well established that palliative radiotherapy provides effective pain relief for symptomatic bone metastases, but controversy remains regarding the optimal dose fractionation. Several meta-analyses and systematic reviews of trials comparing the efficacy of single vs multiple fractionated radiotherapy schedules noted that it is difficult to reach a consensus when inconsistent response end point definitions are used. The purpose of this study was to determine when the most appropriate time to evaluate a response is. MATERIALS AND METHODS: Patients with symptomatic bone metastases treated with palliative radiotherapy between May 2003 and June 2005 were enrolled in the study. They were assessed with the Brief Pain Inventory at baseline, 1, 2 and 3 months after radiotherapy. Analgesic consumption during the preceding 24h was recorded and converted into an equivalent total daily dose of oral morphine. The response to radiotherapy was assessed using the International Bone Metastases Consensus end point definitions at 1, 2 and 3 months of follow-up. RESULTS: One hundred and ninety-nine patients were treated with palliative radiotherapy. All pain scores and functional interference items improved after radiotherapy. The proportion of evaluable patients with a complete response or a partial response increased between 1 month (58%) and 3 months of follow-up (67%). However, when considering intention-to-treat percentages, which take attrition into consideration, overall response rates dropped from 35% at 1 month, to 32% at 2 months, and finally 24% at 3 months. CONCLUSION: We conclude that 2 months after radiotherapy is the most appropriate time point to measure response rates for two reasons: (i) the maximum pain relief for some patients may take more than 4 weeks to achieve and (ii) attrition poses a major problem when response rates are measured at a later date. Future trials should use standardised criteria for end points to facilitate comparison and analysis across clinical trials. Given the limitations of this study, however, further investigations are needed to confirm the response time points for palliative cancer patients.
Percutaneous drainage and stenting for palliation of malignant bile duct obstruction.
European radiology, Mar 2008 (epub: 25 Oct 2007), vol. 18, no. 3, p. 448-56, 62 refs
van-Delden-Otto-M, Lameris-Johan-S.
Abstract
Percutaneous biliary drainage and stenting (PTBD) for palliation of malignant obstructive jaundice has evolved to a safe and effective technique. PTBD is equally effective for treatment of distal and proximal bile obstruction. Metal self-expandable stents have proved superior to plastic stents and should therefore be used. Technical success is >90% en clinical success is >75% in all major series. There are a considerable number of complications, but most can be treated conservatively and procedure-related mortality is <2%>10% in many series, but this is largely due to the underlying disease. About 10-30% of patients will have recurrent jaundice at some point in their disease after PTBD and require re-intervention.
European radiology, Mar 2008 (epub: 25 Oct 2007), vol. 18, no. 3, p. 448-56, 62 refs
van-Delden-Otto-M, Lameris-Johan-S.
Abstract
Percutaneous biliary drainage and stenting (PTBD) for palliation of malignant obstructive jaundice has evolved to a safe and effective technique. PTBD is equally effective for treatment of distal and proximal bile obstruction. Metal self-expandable stents have proved superior to plastic stents and should therefore be used. Technical success is >90% en clinical success is >75% in all major series. There are a considerable number of complications, but most can be treated conservatively and procedure-related mortality is <2%>10% in many series, but this is largely due to the underlying disease. About 10-30% of patients will have recurrent jaundice at some point in their disease after PTBD and require re-intervention.
Defining the role of palliative care in older adults with heart failure.
Defining the role of palliative care in older adults with heart failure.
International journal of cardiology, 10 Apr 2008 (epub: 26 Nov 2007), vol. 125, no. 2, p. 183-90
Bekelman-David-B, Hutt-Evelyn, Masoudi-Frederick-A, Kutner-Jean-S, Rumsfeld-John-S.
Abstract
While palliative care is often thought of as only being applicable to dying patients, its focus on symptom alleviation, patient function, and quality of life has much to offer older adults with chronic heart failure. Heart failure worsens patients' health status through patients' symptom burden, functional limitations, and reduced health- related quality of life. Moreover, older adults with heart failure have multiple other comorbidities and polypharmacy that further contribute to poor health status. Comorbid depression is a particularly important issue. In this patient population, prognosis is limited and often uncertain. Spouses and caregivers of patients report significant distress and depression. Through symptom management, depression and psychosocial care, assistance with defining goals of care and planning for the future, and caregiver support, palliative care has the potential to improve patient health status and reduce costs and hospitalizations. This care is complementary to contemporary heart failure care and can be provided concurrently at any point during the illness based on patient and caregiver needs.
Descriptors
HEART-FAILURE/CO (complications), PP (physiopathology), *TH (therapy)
;
PALLIATIVE-CARE/*MT (methods), TD (trends), *UT (utilization).
AGED;
DEPRESSIVE-DISORDER/CO (complications), PP (physiopathology), TH
(therapy);
FEMALE;
HUMANS.
Language
English.
Publication type
Case-Reports, Journal-Article, Review.
Journal subset
IM.
Country of publisher
Netherlands.
Journal code
0008200291.
Information provider
NLM.
Notes
Publication model: Print-Electronic; Cited medium: Internet; ISSN:
Electronic.
Publication year
2008.
Publication date
20080410.
Entry date
Date created: 20080324
Date completed: 20080610.
International journal of cardiology, 10 Apr 2008 (epub: 26 Nov 2007), vol. 125, no. 2, p. 183-90
Bekelman-David-B, Hutt-Evelyn, Masoudi-Frederick-A, Kutner-Jean-S, Rumsfeld-John-S.
Abstract
While palliative care is often thought of as only being applicable to dying patients, its focus on symptom alleviation, patient function, and quality of life has much to offer older adults with chronic heart failure. Heart failure worsens patients' health status through patients' symptom burden, functional limitations, and reduced health- related quality of life. Moreover, older adults with heart failure have multiple other comorbidities and polypharmacy that further contribute to poor health status. Comorbid depression is a particularly important issue. In this patient population, prognosis is limited and often uncertain. Spouses and caregivers of patients report significant distress and depression. Through symptom management, depression and psychosocial care, assistance with defining goals of care and planning for the future, and caregiver support, palliative care has the potential to improve patient health status and reduce costs and hospitalizations. This care is complementary to contemporary heart failure care and can be provided concurrently at any point during the illness based on patient and caregiver needs.
Descriptors
HEART-FAILURE/CO (complications), PP (physiopathology), *TH (therapy)
;
PALLIATIVE-CARE/*MT (methods), TD (trends), *UT (utilization).
AGED;
DEPRESSIVE-DISORDER/CO (complications), PP (physiopathology), TH
(therapy);
FEMALE;
HUMANS.
Language
English.
Publication type
Case-Reports, Journal-Article, Review.
Journal subset
IM.
Country of publisher
Netherlands.
Journal code
0008200291.
Information provider
NLM.
Notes
Publication model: Print-Electronic; Cited medium: Internet; ISSN:
Electronic.
Publication year
2008.
Publication date
20080410.
Entry date
Date created: 20080324
Date completed: 20080610.
Palliative and Supportive Care 2008 Vol 6 Part 2
Psychiatric issues in palliative care : Recognition of delirium in patients enrolled in hospice care
Page:159-164
An update on the use of antipsychotics in the treatment of delirium
Page:177-182
Page:159-164
An update on the use of antipsychotics in the treatment of delirium
Page:177-182
Demographic and clinical predictors of spirituality in advanced cancer patients
Journal of Clinical Nursing
Volume 17, Issue 13, July 2008
Demographic and clinical predictors of spirituality in advanced cancer patients: a randomized control study
Kyriaki Mystakidou MD, Eleni Tsilika MSc, Efi Parpa MA, Ioanna Hatzipli RN, Marilena Smyrnioti BSc, Antonis Galanos BSc, Lambros Vlahos MD and
pages 1779–1785
Volume 17, Issue 13, July 2008
Demographic and clinical predictors of spirituality in advanced cancer patients: a randomized control study
Kyriaki Mystakidou MD, Eleni Tsilika MSc, Efi Parpa MA, Ioanna Hatzipli RN, Marilena Smyrnioti BSc, Antonis Galanos BSc, Lambros Vlahos MD and
pages 1779–1785
Subscribe to:
Posts (Atom)
