Issues in end-of-life care: patient, caregiver, and clinician perceptions
Female; Humans; Male; Cohort Studies; Adult; Attitude of Health Personnel; Interpersonal Relations; Aged; Middle Aged; Attitude to Death; Physicians; Qualitative Research; Quality of Health Care; Cost of Illness; Washington; 80 and over; Non-U.S. Gov't; Research Support; Caregivers/psychology; Interviews; Family/psychology; Palliative Care/psychology; Terminal Care/psychology; Patients/psychology
CONTEXT: Review of published research indicates the need to better incorporate patient and caregiver perceptions when providing end-of-life (EOL) care. Although considerable research regarding patient and caregiver experience of EOL has been done, little research has studied patients, caregivers, and clinicians as a connected system. OBJECTIVE: To study the perceptions of patients, caregivers, and physicians who are already connected with one another in an EOL care experience. DESIGN: Qualitative study consisting of in-depth, open-ended, face-to-face interviews and content analysis. SETTING: Community family practice residency programs in rural and urban settings in the Affiliated Family Practice Residency Network of the Department of Family Medicine, University of Washington School of Medicine. PARTICIPANTS: Forty-two patients and 39 caregivers facing EOL were interviewed either alone or together after referral by their physicians. Additionally, results of previously published findings from interviews with 39 family practice faculty were included. OUTCOME MEASURES: Perceptions of participants on EOL issues. RESULTS: Participants identified four primary issues related to their experience of EOL care: awareness of impending death, management/coping with daily living while attempting to maintain the management regimen, relationship fluctuations, and the personal experiences associated with facing EOL. Participants expected their physicians to be competent and to provide a caring relationship. CONCLUSIONS: Awareness of these crucial patient and caregiver EOL issues and expectations and how they differ from clinician perspectives can assist clinicians to appropriately explore and address patient/caregiver concerns and thereby provide better quality EOL care.
2003
Farber SJ; Egnew TR; Herman-Bertsch JL; Taylor TR; Guldin GE
Journal Of Palliative Medicine
2003
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/10.1089/10966210360510082" target="_blank" rel="noreferrer">10.1089/10966210360510082</a>
Recognizing suffering
Humans; Social Values; Esthetics; Personhood; Professional Patient Relationship; Psychological; Stress; Patients/psychology; Disease/psychology; Virtues
Implies that the profession of medicine must pursue the relief of suffering. Definition of suffering; Wholeness, person, and self-identity; Purpose; Knowing the suffering of others; Knowledge of others as individuals; Aesthetics.
1991
Cassell EJ
The Hastings Center Report
1991
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/10.2307/3563319" target="_blank" rel="noreferrer">10.2307/3563319</a>
Test-retest reliabilities of two treatment-preference instruments in measuring utilities
Female; Humans; Male; Adult; Aged; Middle Aged; quality of life; Non-U.S. Gov't; Research Support; decision making; Life Expectancy; Patients/psychology; Neoplasms/radiotherapy/surgery
The authors assessed the test-retest reliabilities of two treatment-preference instruments recently applied to the measurement of the utilities of health states after different treatment modalities for cancer. The first instrument measures the strengths of preferences concerning a choice between a wait-and-see policy, and treatment with radiotherapy after an initial surgical breast-conserving procedure for early breast cancer. The second measures the strengths of preferences concerning a choice between two hypothetical surgical treatment outcomes in cancer of the rectum with different probabilities of expected five-year survival. Both measure the strength of a subject's treatment preference given probabilities of treatment-related costs and benefits. The subjects were radiotherapy technicians (n = 20) and cancer patients (n = 20) who were interviewed in weeks 2 and 4 of radiotherapy. The test-retest reliabilities of both instruments were inconsistent and moderately high, with Spearman's rank correlations ranging from 0.38 to 0.81 and weighted kappas ranging from 0.38 to 0.69. To investigate whether the start of treatment with radiotherapy influenced the utilities that patients assigned to health states, the same procedure was applied in another, comparable, group of patients with cancer (n = 20). For this group, the first assessment was made prior to the start of treatment and the second during the second week of radiation therapy. The scores of this group of patients indeed appeared to be less stable than the scores of the patients assessed in weeks 2 and 4 of radiotherapy. However, the instability of the scores could have been the result of test bias.
1993
Kiebert GM; Stiggelbout AM; Leer JW; Kievit J; de Haes HJ
Medical Decision Making
1993
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/10.1177/0272989x9301300207" target="_blank" rel="noreferrer">10.1177/0272989x9301300207</a>
The nature of suffering and the goals of medicine
Humans; Emotions; Sick Role; Holistic Health; Philosophy; Medical; Therapeutics; Disease; Research Support; U.S. Gov't; Philosophy; Pain/psychology; Non-P.H.S.; Patients/psychology
The question of suffering and its relation to organic illness has rarely been addressed in the medical literature. This article offers a description of the nature and causes of suffering in patients undergoing medical treatment. A distinction based on clinical observations is made between suffering and physical distress. Suffering is experienced by persons, not merely by bodies, and has its source in challenges that threaten the intactness of the person as a complex social and psychological entity. Suffering can include physical pain but is by no means limited to it. The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick. Physicians' failure to understand the nature of suffering can result in medical intervention that (though technically adequate) not only fails to relieve suffering but becomes a source of suffering itself.
1982
Cassel EJ
The New England Journal Of Medicine
1982
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/10.1056/nejm198203183061104" target="_blank" rel="noreferrer">10.1056/nejm198203183061104</a>
Whose utilities for decision analysis?
Humans; Attitude to Health; Attitude of Health Personnel; Prognosis; Choice Behavior; Decision Support Techniques; Multivariate Analysis; Non-U.S. Gov't; Research Support; Life Expectancy; Physicians/psychology; Patients/psychology; Patient Participation/psychology; Colostomy/psychology; Game Theory
The goal of this study was to examine sources of variation in the utilities assigned to health states. The authors selected a common clinical problem, carcinoma of the rectum, and examined the utilities assigned to colostomy, a common outcome of treatment for that disease. After preparing and validating a description of colostomy and its effects on patients' lives, utilities for the state were obtained from five groups of individuals. These comprised two groups of patients who received treatment for rectal cancer, a group of physicians and surgeons specializing in the treatment of this disease, and two groups of healthy subjects, none of whom were health professionals. Of the patients who had been treated for rectal cancer, one group had been treated surgically with the formation of colostomies and the other had been treated with radiotherapy and none had a colostomy. Utilities for colostomy were elicited using the standard gamble, category rating, and a treatment choice questionnaire. The groups differed substantially in the utilities assigned to colostomy. In general, patients with colostomies and physicians assigned significantly higher utilities than did patients who did not themselves have a colostomy. The clinical significance of these differences was examined in a simplified clinical decision problem that compared surgery (with colostomy) and radiotherapy (without colostomy) as primary treatment. The expected clinical value of these treatment alternatives was substantially influenced by the differences observed in utilities for colostomy. These results emphasize the importance of patient utilities in clinical decision making and the need to gain greater understanding of the factors that influence the utilities that patients assign to health states.
1990
Boyd NF; Sutherland HJ; Heasman KZ; Tritchler DL; Cummings BJ
Medical Decision Making
1990
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/10.1177/0272989x9001000109" target="_blank" rel="noreferrer">10.1177/0272989x9001000109</a>