Please Look at My Baby - When Clinicians Should Say the Word "Hospice"
Humans; Infant; Communication; Hospices; Physician-Patient Relations; Truth Disclosure; Hospice Care
For the first time since he was born, we looked at our son as a baby who had withstood endless medical interventions. Rather than taking each new diagnosis in stride, we stopped to reflect. [...]
Grinberg G
The New England Journal of Medicine
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1056/NEJMp2213031" target="_blank" rel="noreferrer noopener">10.1056/NEJMp2213031</a>
'Just gripping my heart and squeezing': Naming and explaining the emotional experience of receiving bad news in the paediatric oncology setting
Physician-Patient Relations; Medical Oncology; Male; Communication; Child; Humans; Adult; Pediatrics; Female; Parents/px [Psychology]; Emotions; Truth Disclosure
OBJECTIVE: To explore recipients' perspectives on the range and origins of their emotional experiences during their 'bad news' consultations., METHODS: Participants were four bereaved families of children who had changed from active treatment to palliative care in paediatric oncology. Data was collected using emotional touchpoint storytelling. The names (descriptors) given to the emotional experiences were linguistically classified. Explanations of their perceived origins were examined using applied thematic analysis., RESULTS: 26 descriptors were given, relating to bodily sensations, affective states, evaluations and cognitive conditions. Three themes were identified in the origins of these experiences - 'becoming aware', 'the changes' and 'being in this situation'. Parents described strong emotional displays during the consultation including physical collapse. These related to the internal process of 'becoming aware'. Three descriptors were given as originating from the clinicians and their delivery of the news - 'supported', 'included', 'trusting'., CONCLUSIONS: Recipients perceive their emotional experiences as mainly originating from the news itself, and perceived consequences of it, rather than its delivery. Strong emotional reactions during the interaction are not necessarily an indicator of ineffectual delivery., PRACTICE IMPLICATIONS: Findings offer a thematic framing that may support and deepen practitioners understanding of recipients' emotional reactions during bad news consultations.Crown Copyright � 2017. Published by Elsevier B.V. All rights reserved.
Nelson M; Kelly D; McAndrew R; Smith P
Patient education and counseling
2017
<a href="http://doi.org/%2010.1016/j.pec.2017.03.028" target="_blank" rel="noreferrer noopener">10.1016/j.pec.2017.03.028</a>
Medical ethics in pediatric critical care
Child; Humans; United States; Terminal Care; decision making; Parental Consent; Personal Autonomy; Pediatrics; Withholding Treatment; Professional-Family Relations; Dissent and Disputes; Truth Disclosure; Critical Care; Tissue and Organ Procurement; Ethics; Medical; Patient Rights; Clinical; Ethics Committees; Resource Allocation
Ethically charged situations are common in pediatric critical care. Most situations can be managed with minimal controversy within the medical team or between the team and patients/families. Familiarity with institutional resources, such as hospital ethics committees, and national guidelines, such as publications from the American Academy of Pediatrics, American Medical Association, or Society of Critical Care Medicine, are an essential part of the toolkit of any intensivist. Open discussion with colleagues and within the multidisciplinary team can also ensure that when difficult situations arise, they are addressed in a proactive, evidence-based, and collegial manner.
2013-04
Orioles A; Morrison WE
Critical Care Clinics
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.ccc.2012.12.002" target="_blank" rel="noreferrer">10.1016/j.ccc.2012.12.002</a>
Training in difficult conversations: a national survey of pediatric hematology-oncology and pediatric critical care physicians
Female; Humans; Male; Pediatrics; Health Care Surveys; Education; Communication; Physicians; Truth Disclosure; Medical Oncology; Critical Care; Fellowships and Scholarships; Hematology; Teaching; Medical
BACKGROUND: In pediatric oncology and critical care, physicians give difficult news, including discussions regarding palliative care and comfort measures, but there are minimal data regarding fellowship program preparation for this task. PURPOSE: We surveyed graduates of pediatric hematology/oncology and critical care fellowships regarding communication training to describe teaching methods, assess which were helpful, and determine whether comfort level is related to training experiences. METHODS: A 12-question Web survey was sent to physicians completing fellowship in the previous 5 years. RESULTS: Of 345 fellows identified, 171 (50%) responded. Prior training included observing senior physicians (100%), being observed (78%), reading (56%), lectures (46%), role-play (20%), workshops (16%), simulation (13%), and videos (13%). Observing senior physicians was thought most helpful. More years since training (p
2009
Kersun L; Gyi L; Morrison WE
Journal Of Palliative Medicine
2009
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Journal Article
<a href="http://doi.org/10.1089/jpm.2008.0251" target="_blank" rel="noreferrer">10.1089/jpm.2008.0251</a>
Are we training our fellows adequately in delivering bad news to patients? A survey of hematology/oncology program directors
Humans; United States; Physician-Patient Relations; Data Collection; Attitude of Health Personnel; Education; Communication; Truth Disclosure; Fellowships and Scholarships; Medical; Medical Oncology/education; Graduate/economics/standards; Hematology/education
BACKGROUND: Medical oncologists often must deliver bad news. The authors were interested in the extent of formal training in delivering bad news in hematology/oncology fellowships in the United States. METHODS: An e-mail survey was sent to all hematology/oncology fellowship program directors in the United States. Surveys were e-mailed to 124 program directors and responses were received either via e-mail or regular mail. Program directors were asked the adequacy, the perceived necessity, the quality of this training, and the institutional support provided. It was also intended to elicit responses about the degree of formal training fellows receive in delivering bad news. chi(2) Statistics were used to perform comparisons between items; p values of less than 0.05 were considered statistically significant. RESULTS: Sixty-five surveys were completed and returned (52% response rate). The majority of programs, 82%, are in urban areas and 97% of the primary teaching hospitals are considered tertiary care centers and 46% of programs carry a National Cancer Institute (NCI) designation. Median number of fellows in a training program is 6 with the range being 3 to 46. Eighty-nine percent of program directors reported that they themselves received little to no formal training in delivering bad news, but they report 37% of current fellows receive little to no formal training with 40% receiving some training and additional 23% receiving moderate to extensive training (p
2009
Hebert HD; Butera JN; Castillo J; Mega AE
Journal Of Palliative Medicine
2009
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Journal Article
<a href="http://doi.org/10.1089/jpm.2009.0074" target="_blank" rel="noreferrer">10.1089/jpm.2009.0074</a>
Compassionate silence in the patient-clinician encounter: a contemplative approach
Humans; Physician-Patient Relations; Professional-Family Relations; Communication; Truth Disclosure; empathy
In trying to improve clinician communication skills, we have often heard clinicians at every level admonished to "use silence," as if refraining from talking will improve dialogue. Yet we have also noticed that this "just do it," behavior-focused "use" of silence creates a new, different problem: the clinician looks uncomfortable using silence, and worse, generates a palpable atmosphere of unease that feels burdensome to both the patient and clinician. We think that clinicians are largely responsible for the effect of silence in a clinical encounter, and in this article we discuss what makes silence enriching--enabling a kind of communication between clinician and patient that fosters healing. We describe a typology of silences, and describe a type of compassionate silence, derived from contemplative practice, along with the mental qualities that make this type of silence possible.
2009
Back AL; Bauer-Wu SM; Rushton CH; Halifax J
Journal Of Palliative Medicine
2009
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Journal Article
<a href="http://doi.org/10.1089/jpm.2009.0175" target="_blank" rel="noreferrer">10.1089/jpm.2009.0175</a>
Parents' perspectives on physician-parent communication near the time of a child's death in the pediatric intensive care unit
Child; Female; Humans; Male; United States; Intensive Care Units; Adult; Interviews as Topic; Hospital Mortality; Prognosis; Middle Aged; Professional-Family Relations; Communication; Death; Physician's Role; Truth Disclosure; Hospitals; Pediatric; Preschool; bereavement; Parents/psychology
OBJECTIVE: Communicating bad news about a child's illness is a difficult task commonly faced by intensive care physicians. Greater understanding of parents' scope of experiences with bad news during their child's hospitalization will help physicians communicate more effectively. Our objective is to describe parents' perceptions of their conversations with physicians regarding their child's terminal illness and death in the pediatric intensive care unit (PICU). DESIGN: A secondary analysis of a qualitative interview study. SETTING: Six children's hospitals in the National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. PARTICIPANTS: Fifty-six parents of 48 children who died in the PICU 3-12 months before the study. INTERVENTIONS: Parents participated in audio recorded semistructured telephone interviews. Interviews were analyzed using established qualitative methods. MEASUREMENTS AND MAIN RESULTS: Of the 56 parents interviewed, 40 (71%) wanted to provide feedback on the way information about their child's terminal illness and death was communicated by PICU physicians. The most common communication issue identified by parents was the physicians' availability and attentiveness to their informational needs. Other communication issues included honesty and comprehensiveness of information, affect with which information was provided, withholding of information, provision of false hope, complexity of vocabulary, pace of providing information, contradictory information, and physicians' body language. CONCLUSIONS: The way bad news is discussed by physicians is extremely important to most parents. Parents want physicians to be accessible and to provide honest and complete information with a caring affect, using lay language, and at a pace in accordance with their ability to comprehend. Withholding prognostic information from parents often leads to false hopes and feelings of anger, betrayal, and distrust. Future research is needed to investigate whether the way bad news is discussed influences psychological adjustment and family functioning among bereaved parents.
2008
Meert KL; Eggly S; Pollack M; Anand KJ; Zimmerman J; Carcillo J; Newth CJ; Dean JM; Willson DF; Nicholson C; National Institute of Child Health; Human Development Collaborative Pediatric Critical Care Research Network
Pediatric Critical Care Medicine
2008
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Journal Article
<a href="http://doi.org/10.1097/01.PCC.0000298644.13882.88" target="_blank" rel="noreferrer">10.1097/01.PCC.0000298644.13882.88</a>
Hope and prognostic disclosure
Child; Female; Humans; Male; Physician-Patient Relations; Adult; Attitude to Health; Parent-Child Relations; Prognosis; Truth Disclosure; Multivariate Analysis; quality of life; adolescent; Preschool; infant
PURPOSE: Physicians sometimes selectively convey prognostic information to support patients' hopes. However, the relationship between prognostic disclosure and hope is not known. PATIENTS AND METHODS: We surveyed 194 parents of children with cancer (overall response rate, 70%) in their first year of treatment at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA), and we surveyed the children's physicians. We evaluated relationships between parental recall of prognostic disclosure by the physician and possible outcomes, including hope, trust, and emotional distress. Our main outcome was assessed by asking parents how often the way the child's oncologist communicated with them about the children's cancers made them feel hopeful. RESULTS: Nearly half of parents reported that physician communication always made them feel hopeful. Parents who reported receiving a greater number of elements of prognostic disclosure were more likely to report communication-related hope (odds ratio [OR], 1.77 per element of disclosure; P = .001), even when the likelihood of a cure was low (OR, 5.98 per element of disclosure with likelihood of a cure < 25%; P = .03). In a multivariable model, parents were more likely to report that physician communication always made them feel hopeful when they also reported receipt of more elements of prognostic disclosure (OR, 1.60; P = .03) and high-quality communication (OR, 6.58; P < .0001). Communication-related hope was inversely associated with the child's likelihood of cure (OR, 0.65; P = .005). CONCLUSION: Although physicians sometimes limit prognostic information to preserve hope, we found no evidence that prognostic disclosure makes parents less hopeful. Instead, disclosure of prognosis by the physician can support hope, even when the prognosis is poor.
2007
Mack JW; Wolfe J; Cook EF; Grier HE; Cleary PD; Weeks JC
Journal Of Clinical Oncology
2007
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Journal Article
<a href="http://doi.org/10.1200/JCO.2007.12.6110" target="_blank" rel="noreferrer">10.1200/JCO.2007.12.6110</a>
Attitudes of adolescent cancer survivors toward end-of-life decisions for minors.
Child; Female; Humans; Male; Euthanasia; Netherlands; Truth Disclosure; Sick Role; Right to Die; adolescent; Psychological; DNAR; Attitude to Death; Suicide; Assisted/px [Psychology]; Interview; decision making; Advance Directives; Passive; Palliative Care/px [Psychology]; Terminal Care/px [Psychology]; Neoplasms/px [Psychology]; Minors/px [Psychology]; Survivors/px [Psychology]; Euthanasia/px [Psychology]; Informed Consent/px [Psychology]
OBJECTIVES: The present study aimed to investigate the attitudes of adolescent cancer survivors toward end-of-life decisions with life-shortening effects, including nontreatment decisions (NTDs), intensified alleviation of pain and symptoms (APS), and euthanasia, and the influence of illness experience on these attitudes., METHODS: Adolescent cancer survivors were interviewed with a structured questionnaire using hypothetical case descriptions. The results were compared with a study of 1769 adolescents without experience of chronic illness., RESULTS: Eighty-three adolescents, 11 to 18 years of age, were interviewed. In terminal situations, 70% to 90% found requests for NTDs acceptable, 84% requests for APS, and 57% to 64% requests for euthanasia. Requests for end-of-life decisions were less acceptable in nonterminal situations, where 28% found requests for NTDs acceptable, 39% to 47% requests for APS, and 11% to 21% requests for euthanasia. Frequently cited reasons for holding back physicians from administering a lethal drug to a child were the child not being well informed about his or her condition (92%) and the parents' opinion not being asked (92%). Compared with adolescents without experience with chronic illness, cancer survivors were more accepting toward requests for NTDs and APS in terminal situations., CONCLUSIONS: Adolescent cancer survivors, like other adolescents, want to be involved in medical decision-making at the end of life. They value autonomous decision-making, without excluding parents from the process. The experience of living through a life-threatening illness can alter adolescents' attitudes toward requests for NTDs and APS.
2009
Pousset G; Bilsen J; De Wilde J; Benoit Y; Verlooy J; Bomans A; Deliens L; Mortier F
Pediatrics
2009
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Journal Article
<a href="http://doi.org/10.1542/peds.2009-0621" target="_blank" rel="noreferrer">10.1542/peds.2009-0621</a>
Parental communication and children's behaviour following diagnosis of childhood leukaemia
Adaptation; PedPal Lit; Lymphocytic; Truth Disclosure; Acute/diagnosis/drug therapy/psychology Male Parent-Child Relations Research Support; mean age = 7.33 years) newly diagnosed with acute lymphoblastic leukaemia (ALL) were interviewed about (i) the child's reactions and behaviour following diagnosis; parents differ in their views about what to tell the child. In this study 55 parents of children (36 boys and 19 girls; parents' perceptions of childhood cancer affect the way they communicate with their child. These findings may be used to inform training packages in order to facilitate improved communicatio n amongst health professionals.; Psychological Affect Antineoplastic Agents/administration & dosage Child Child BehaviorCommunication Female Health Education Humans Interview; Psychological Leukemia
2005
Clarke SA; Davies H; Jenney M; Glaser A; Eiser C
Psycho-oncology
2005
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Journal Article
<a href="http://doi.org/10.1002/pon.843" target="_blank" rel="noreferrer">10.1002/pon.843</a>
Talking about death with children who have severe malignant disease
Child; Female; Humans; Male; Terminally Ill; Adult; Parent-Child Relations; Logistic Models; Death; Truth Disclosure; Sweden; Chi-Square Distribution; adolescent; Preschool; bereavement; Parents/psychology; Neoplasms
BACKGROUND: One of the questions faced by the parents of a child who is terminally ill with a malignant disease is whether or not they should talk about death with their child. METHODS: In 2001, we attempted to contact all parents in Sweden who had lost a child to cancer between 1992 and 1997. Among 561 eligible parents, 449 answered a questionnaire, and 429 stated whether or not they had talked about death with their child. RESULTS: None of the 147 parents who talked with their child about death regretted it. In contrast, 69 of 258 parents (27 percent) who did not talk with their child about death regretted not having done so. Parents who sensed that their child was aware of his or her imminent death were more likely to regret not having talked about it (47 percent, as compared with 13 percent of parents who did not sense this awareness in their child; relative risk, 3.7; 95 percent confidence interval, 2.3 to 6.0). The same variable was related to having talked about death (50 percent vs. 13 percent; relative risk, 3.8; 95 percent confidence interval, 2.6 to 5.6), as was being religious (42 percent vs. 25 percent; relative risk, 1.7; 95 percent confidence interval, 1.2 to 2.3). The child's age was related to both having talked about death and the parents' regretting not having talked about it. CONCLUSIONS: Parents who sense that their child is aware of his or her imminent death more often later regret not having talked with their child than do parents who do not sense this awareness in their child; overall, no parent in this cohort later regretted having talked with his or her child about death.
2004
Kreicbergs U; Valdimarsdottir U; Onelov E; Henter JI; Steineck G
New England Journal Of Medicine
2004
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Journal Article
<a href="http://doi.org/10.1056/NEJMoa040366" target="_blank" rel="noreferrer">10.1056/NEJMoa040366</a>
Patients' perspectives on physician skill in end-of-life care: differences between patients with COPD, cancer, and AIDS
Female; Male; Aged; Attitude to Death; Focus Groups; Medical; Non-U.S. Gov't; Pulmonary Disease; Human; Neoplasms/psychology; Truth Disclosure; Support; Middle Age; Ethics; Physician-Patient Relations; Terminal Care/psychology; Clinical Competence; Acquired Immunodeficiency Syndrome/psychology; Chronic Obstructive/psychology
OBJECTIVES: Patients' views of physician skill in providing end-of-life care may vary across different diseases, and understanding these differences will help physicians improve the quality of care they provide for patients at the end of life. The objective of this study was to examine the perspectives of patients with COPD, cancer, or AIDS regarding important aspects of physician skill in providing end-of-life care. DESIGN: Qualitative study using focus groups and content analysis based on grounded theory. SETTING: Outpatients from multiple medical settings in Seattle, WA. PATIENTS: Eleven focus groups of 79 patients with three diseases: COPD (n = 24), AIDS (n = 36), or cancer (n = 19). RESULTS: We identified, from the perspectives of patients, the important physician skills for high-quality end-of-life care. Remarkable similarities were found in the perspectives of patients with COPD, AIDS, and cancer, including the importance of emotional support, communication, and accessibility and continuity. However, each disease group identified a unique theme that was qualitatively more important to that group. For patients with COPD, the domain concerning physicians' ability to provide patient education stood out as qualitatively and quantitatively more important. Patients with COPD desired patient education in five content areas: diagnosis and disease process, treatment, prognosis, what dying might be like, and advance care planning. For patients with AIDS, the unique theme was pain control; for patients with cancer, the unique theme was maintaining hope despite a terminal diagnosis. CONCLUSIONS: Patients with COPD, AIDS, and cancer demonstrated many similarities in their perspectives on important areas of physician skill in providing end-of-life care, but patients with each disease identified a specific area of end-of-life care that was uniquely important to them. Physicians and educators should target patients with COPD for efforts to improve patient education about their disease and about end-of-life care, especially in the areas defined above. Physicians caring for patients with advanced AIDS should discuss pain control at the end of life, and physicians caring for patients with cancer should be aware of many patients' desires to maintain hope. Physician understanding of these differences will provide insights that allow improvement in the quality of care.
2002
Curtis JR; Wenrich MD; Carline JD; Shannon SE; Ambrozy DM; Ramsey PG
Chest
2002
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Journal Article
Complexities in prognostication in advanced cancer: "to help them live their lives the way they want to"
Female; Physician-Patient Relations; Prognosis; Aged; Patient Participation; Survival Analysis; Antineoplastic Agents; 80 and over; Non-U.S. Gov't; P.H.S.; U.S. Gov't; algorithms; Human; Truth Disclosure; Support; Adenocarcinoma/drug therapy/secondary; Hormonal/therapeutic use; Skin Neoplasms/drug therapy/secondary; Stomach Neoplasms/drug therapy/pathology; Tamoxifen/therapeutic use
Predicting survival and disclosing the prediction to patients with advanced disease, particularly cancer, is among the most difficult tasks that physicians face. With the de-emphasis of prognosis in favor of diagnosis and therapeutics in the medical literature, physicians may have difficulty finding the survival information they need to make appropriate estimates of survival for patients who develop cancer. Quite separate from the challenge of estimating survival accurately, physicians may also find the process of disclosing the prognosis to their patients difficult. Using the vignette of a real patient with advanced cancer who far outlived her physician's prognostic estimate, we discuss clinical issues related to the science of prognosis in advanced cancer and the art of its disclosure.
2003
Lamont EB; Christakis NA
Jama
2003
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Journal Article
Influence of physician confidentiality assurances on adolescents' willingness to disclose information and seek future health care. A randomized controlled trial
Female; Humans; Male; Physician-Patient Relations; Truth Disclosure; California; Analysis of Variance; Disclosure; Regression Analysis; adolescent; Empirical Approach; Professional Patient Relationship; Adolescent Transitions; Adolescent Health Services/utilization; Confidentiality
CONTEXT: Adolescents' concerns about privacy in clinical settings decrease their willingness to seek health care for sensitive problems and may inhibit their communication with physicians. OBJECTIVE: To investigate the influence of physicians' assurances of confidentiality on adolescents' willingness to disclose information and seek future health care. DESIGN: Randomized controlled trial. SETTING: Three suburban public high schools in California. PARTICIPANTS: The 562 participating adolescents represented 92% of students in mandatory classes. INTERVENTION: After random assignment to 1 of 3 groups, the adolescents listened to a standardized audiotape depiction of an office visit during which they heard a physician who assured unconditional confidentiality, a physician who assured conditional confidentiality, or a physician who did not mention confidentiality. MAIN OUTCOME MEASURES: Adolescents' willingness to disclose general information, willingness to disclose information about sensitive topics, intended honesty, and likelihood of return visits to the physician depicted in the scenario were assessed by anonymous written questionnaire. RESULTS: Assurances of confidentiality increased the number of adolescents willing to disclose sensitive information about sexuality, substance use, and mental health from 39% (68/175) to 46.5% (178/383) (beta=.10, P=.02) and increased the number willing to seek future health care from 53% (93/175) to 67% (259/386) (beta=.17, P
1997
Ford CA; Millstein SG; Halpern-Felsher BL; Irwin CE
Jama
1997
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Journal Article
<a href="http://doi.org/10.1001/jama.1997.03550120089044" target="_blank" rel="noreferrer">10.1001/jama.1997.03550120089044</a>
Physician-older patient communication at the end of life.
Female; Humans; Male; Aged; Communication; Patient Participation; Truth Disclosure; Time Factors; Advance Directive Adherence; advance care planning; DNAR; Attitude to Death; Advance Directives; Physician-Patient Relations; Terminal Care/mt [Methods]; Empirical Research; Palliative Care/mt [Methods]
Communication with dying patients and their families requires special skills to assist them in this extremely stressful period. This article begins with a case that illustrates many of the challenges of communicating with the dying. It then reviews the literature about communication with older patients at the end of life, focusing on physician-patient discussions, decision-making, advance directives, and cultural factors. The article concludes with a practical discussion of problems that physicians may encounter when working with older patients at the end of life and their families and recommendations to improve communication.
2000
Siegler EL; Levin BW
Clinics In Geriatric Medicine
2000
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Journal Article
<a href="http://doi.org/10.1016/s0749-0690(05)70016-1" target="_blank" rel="noreferrer">10.1016/s0749-0690(05)70016-1</a>
Attitudes and beliefs of palliative care physicians regarding communication with terminally ill cancer patients.
Female; Humans; Male; Canada; Prognosis; Prospective Studies; Patient-Centered Care; Resuscitation Orders; Cross-Cultural Comparison; Europe; DNAR; Truth Disclosure; Palliative Care/px [Psychology]; Family/px [Psychology]; Physician-Patient Relations; Terminally Ill/px [Psychology]; Attitude of Health Personnel; Neoplasms/px [Psychology]; South America
The subject of communication between palliative care physicians and their patients regarding their diagnosis and prognosis has not been extensively researched. The purpose of this survey was to compare the attitudes and beliefs of palliative care specialists regarding communication with the terminally ill in Europe, South America, and Canada. A sample of palliative care physicians from South America (Argentina and Brazil), French-speaking Europe, and Canada were identified, and posted a questionnaire. Physicians who stated that they practised palliative care at least 30% of their time were considered evaluable as palliative care specialists. Of a total of 272 questionnaires, 228 were returned (84%); and 182/228 (81%) respondents were considered to be palliative care specialists. Palliative care physicians in all three regions believed that cancer patients should be informed of their diagnosis and the terminal nature of their illness. Physicians reported that at least 60% of their patients knew their diagnosis and the terminal stage of their illness in 52% and 24% of cases in South America, and 69% and 38% of cases in Europe, respectively. All physicians agreed that 'do not resuscitate' orders should be present, and should be discussed with the patient in all cases. While 93% of Canadian physicians stated that at least 60% of their patients wanted to know about the terminal stage of their illness, only 18% of South American, and 26% of European physicians said this (P < 0.001). Similar results were found when the physicians were asked the percentage of families who want patients to know the terminal stage of their illness. However, almost all of the physicians agreed that if they had terminal cancer they would like to know. There was a significant association between patient based decision-making and female sex (P = 0.007), older age (P = 0.04), and physicians from Canada and South America (P < 0.001). Finally, in their daily decision making, South American physicians were significantly more likely to support beneficence and justice as compared with autonomy. Canadian physicians were more likely to support autonomy as compared with beneficence. In summary, our findings suggest that there are major regional differences in the attitudes and beliefs of physicians regarding communication at the end of life. More research is badly needed on the attitudes and beliefs of patients, families, and health care professionals in different regions of the world.
2000
Bruera E; Neumann CM; Mazzocato C; Stiefel F; Sala R
Palliative Medicine
2000
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Journal Article
<a href="http://doi.org/10.1191/026921600674582192" target="_blank" rel="noreferrer">10.1191/026921600674582192</a>
Children with cancer talk about their own death with their families
Child; Female; Humans; Male; Parent-Child Relations; Attitude of Health Personnel; Questionnaires; Attitude to Death; Communication; Truth Disclosure; Child Psychology; Self Disclosure; Sibling Relations; Family Health; Preschool; Non-U.S. Gov't; Research Support; patient care team; Neoplasms/psychology
In this study we looked at children dying from progressive malignant diseases and their families, to see whether they discussed the child's impending death together. We also looked at what factors might influence this. We questioned staff in the oncology department about their attitude to an open approach in talking about death and their views of how often it occurred. Analysis of 31 children over 3 years old and their families showed that the approach of death was mutually acknowledged by six families (19%); seven (23%) children were felt to know but chose not to discuss death; in two (6%) families, discussion with the child was blocked; nine (29%) children died unaware, and in seven (23%) families, what the children felt was unknown. Staff members (22) all advocated an open, honest approach in talking to children about their death but varied widely and overestimated how often they believed discussion of the child's impending death occurred (range, 10%-80%; median, 45%).
1993
Goldman A; Christie D
Pediatric Hematology And Oncology
1993
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Journal Article
<a href="http://doi.org/10.3109/08880019309029488" target="_blank" rel="noreferrer">10.3109/08880019309029488</a>
Communication with parents of children with cancer
Child; Female; Male; Grief; Adult; Parent-Child Relations; Follow-Up Studies; Defense Mechanisms; adolescent; Preschool; Adaptation; Psychological; patient care team; infant; Human; Professional-Family Relations; Neoplasms/psychology; Truth Disclosure; Interview; Communication; Leukemia/psychology; Parents/education/psychology
The purpose of this study was to assess the receptiveness of parents to information given about their child's life threatening illness. Three months after the child's diagnosis, an independent interviewer, using a structured questionnaire, interviewed the parents about what and how they had been told, and assessed the stage of parental coping reached at that time. All patients were treated at a regional paediatric oncology centre (RHSCE) and the interviews were conducted preferably in the family home (61%), or in a 'quiet' hospital room (39%). Twenty-five, unselected, consecutive patients with cancer and leukaemia diagnosed and treated at the RHSCE and their families were recruited into the study (1988-1989). One child died during the first three months and one single parent family refused co-operation. Eighteen of the 23 interviews conducted were with both parents, and five were with single parents (all maternal). All 23 sets of parents admitted deep shock and devastation on hearing the initial diagnosis, with 12 sets feeling that they had taken in little or none of the information given. A long interview was conducted a few days after the initial talk with the consultant. The parents of four children (17%) denied that the long interview had occurred whilst 10/19 who remembered it expressed specific lack of understanding of some or all details. All families remembered a large number (10-20) of subsequent talks with a wide range of staff, but 14/23 felt that some of the information was still confusing or conflicting, and 9/14 did not want to ask for further clarification, principally because they did not want to hear more bad news. The majority felt the child understood little of what was going on. At the study interview, most parents were assessed as still being very anxious about their child's illness, whilst two couples, one single mother and one father, were content with what and how they had been told about their child's illness and were in a state of emotional homeostasis. It is concluded that communication of bad news is a two-way process requiring skilled medical staff, but also a receptive audience. The emotional state of the parent determines his or her ability to hear and comprehend the information given. The results imply that repetition and clarification at consultation interviews is required until parents are emotionally able to hear, accept and comprehend complex news. Written material, taped interviews and simple videos can assist in this process.
1994
Eden OB; Black I; MacKinlay GA; Emery AE
Palliative Medicine
1994
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