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Palliative sedation is a last resort medical act aimed at relieving intolerable suffering induced by intractable symptoms in patients at the end-of-life. This act is generally accepted as being medically indicated under certain circumstances. A controversy remains in the literature as to its ethical validity. There is a certain vagueness in the literature regarding the legitimacy of palliative sedation in cases of non-physical refractory symptoms, especially “existential suffering.” This pilot study aims to measure the influence of two independent variables (short/long prognosis and physical/existential suffering) on the physicians' attitudes toward palliative sedation (dependent variable).
We used a 2 × 2 experimental design as described by Blondeau et al. Four clinical vignettes were developed (vignette 1: short prognosis/existential suffering; vignette 2: long prognosis/existential suffering; vignette 3: short prognosis/physical suffering; vignette 4: long prognosis/physical suffering). Each vignette presented a terminally ill patient with a summary description of his physical and psychological condition, medication, and family situation. The respondents' attitude towards sedation was assessed with a six-point Likert scale. A total of 240 vignettes were sent to selected Swiss physicians.
74 vignettes were completed (36%). The means scores for attitudes were 2.62 ± 2.06 (v1), 1.88 ± 1.54 (v2), 4.54 ± 1.67 (v3), and 4.75 ± 1.71 (v4). General linear model analyses indicated that only the type of suffering had a significant impact on the attitude towards sedation (F = 33.92, df = 1, p = 0.000).
Significance of the results:
The French Swiss physicians' attitude toward palliative sedation is more favorable in case of physical suffering than in existential suffering. These results are in line with those found in the study of Blondeau et al. with Canadian physicians and will be discussed in light of the arguments given by physicians to explain their decisions.
Cancer patients and family members can feel abandoned by their oncologist at the transition to end-of-life (eoL) care. In this study, we evaluated the level of satisfaction of family caregivers when the oncology team assisted the patient until death.
Two oncology units were reorganized to ensure continuity of care; oncologists trained in palliative care medicine assisted patients until death. Relatives who assisted the patient at home or at an inpatient hospice underwent a semi-structured phone interview >1 month after the patient's death. Satisfaction was measured using a five-point Likert scale ranging from very dissatisfied (score 0) to very satisfied (score 100).
Relatives of 65 patients were contacted, 55 accepted the interview. Patients were followed at home (41) or at an inpatient hospice (14), for 1–24 weeks (median 3 weeks). A specific question on the relevance of the oncologist having a role in EoL care produced a score of 82. The overall satisfaction score was higher than in our previous study in which a continuity of care model was not adopted, with a score improvement from 55/100 to 84/100 (p < 0.001).
Significance of results:
A care program where the oncologist is involved in EoL management improved the satisfaction of caregivers of cancer patients. When a longstanding and trusting relationship has been established, the connection between the patient and the oncologist should not be lost.
Self-monitoring behaviors of cancer patients benefit patients, caregivers, and providers, and yet the phenomenon of self-monitoring from the cancer-patient perspective has not been studied. We examined cancer patients' self-monitoring preferences and practices, focusing on the meaning of self-monitoring within the cancer experience.
Semi-structured interviews were conducted among adult cancer patients who had been seen at least once at a rural United States cancer center. Questions sought out the meaning of self-monitoring and its practical aspects. Qualitative data were analyzed by adapting the four-stepped method by Giorgi for empirical phenomenological analysis.
Twenty participants were interviewed (11 women and 9 men). Transcribed interviews revealed that cancer patient self-monitoring is self-stylized work that ranges from simple to complex, while being both idiosyncratic and routine. Participants reported using tools with systems for use that fit their distinctive lives for the purpose of understanding and using information they deemed to be important in their cancer care. Three conceptual categories were discerned from the data that help to elucidate this self-stylized work as fitting their individual priorities and preferences, reflecting their identities, and being born of their work lives.
Significance of results:
Findings highlight patients' unique self-monitoring preferences and practices, calling into question the assumption that the sole use of standardized tools are the most effective approach to engaging patients in this practice. Self-monitoring efforts can be validated when providers welcome or adapt to patients' self-stylized tools and systems. Doing so may present opportunity for improved communications and patient-centered care.
Research suggests that the strength of the relationship between body image and emotional distress decreases with age. Past research has focused on expected aging-related body changes, and has not yet examined unexpected body changes (e.g., breast cancer surgery). The present post-hoc study assessed relationships between age, body image, and emotional distress in women facing breast cancer surgery.
Older (≥65 years, n = 40) and younger (<65 years, n = 40) women were matched on race/ethnicity, marital status, and surgery type. Within one week prior to surgery, participants completed measures of demographics, aspects of body image, and emotional distress (general and surgery-specific).
Results indicated that: (1) body image did not differ by age (p > 0.999); (2) older women reported less pre-surgical emotional distress than younger women (p's < 0.01); and, (3) age moderated the relationship between body image and emotional distress (p's < 0.06).
Significance of results:
The results suggest that younger women, particularly those with poor body image, are at an increased risk for pre-surgical emotional distress. These women may benefit from pre-surgical interventions designed to improve body image or to reduce pre-surgical emotional distress.
Social and economic barriers can hinder access to quality palliative and end-of-life care for patients living in inner-city communities. Using a community-based participatory research (CBPR) approach, we investigated the stresses associated with living with a chronic disease and barriers to access and utilization of palliative care resources experienced by low-income patients and caregivers in five inner-city communities.
Four focus groups (N = 33) were conducted with community stakeholders, including healthcare professionals (social workers and nurses), persons living with chronic illnesses (e.g., HIV/AIDS, cardiovascular disease, and cancer), and caregivers. Focus group responses were analyzed using thematic analyses.
Patients' and caregivers' stresses centered around five themes: lack of family support, communication barriers with healthcare professionals, minority stress, caregiver burden, and lack of spiritual support. The community stakeholders identified resources and services to improve access to care and the quality of life of underserved, low-income populations living with chronic illnesses.
Significance of Results:
A CBPR approach enabled us to develop an interdisciplinary and culturally sensitive intervention to begin addressing the palliative and end-of-life needs of the patients and caregivers of the inner-city community.
The purposes of this study were to develop a communication skills training (CST) workshop program based on patient preferences, and to evaluate preliminary feasibility of the CST program on the objective performances of physicians and the subjective ratings of their confidence about the communication with patients at the pre- and post-CST.
The CST program was developed, based on the previous surveys on patient preferences (setting up the supporting environment of the interview, making consideration for how to deliver bad news, discussing about additional information, and provision of reassurance and emotional support) and addressing the patient's emotion with empathic responses, and stressing the oncologists' emotional support. The program was participants' centered approach, consisted a didactic lecture, role plays with simulated patients, discussions and an ice-breaking; a total of 2-days. To evaluate feasibility of the newly developed CST program, oncologists who participated it were assessed their communication performances (behaviors and utterances) during simulated consultation at the pre- and post-CST. Participants also rated their confidence communicating with patients at the pre-, post-, and 3-months after CST, burnout at pre and 3 months after CST, and the helpfulness of the program at post-CST.
Sixteen oncologists attended a newly developed CST. A comparison of pre-post measures showed improvement of oncologists' communication performances, especially skills of emotional support and consideration for how to deliver information. Their confidence in communicating bad news was rated higher score at post-CST than at pre-CST and was persisted at 3-months after the CST. Emotional exhaustion scores decreased at 3-months after CST. In addition, oncologists rated high satisfaction with all components of the program.
Significance of results:
This pilot study suggests that the newly developed CST program based on patient preferences seemed feasible and potentially effective on improving oncologists' communication behaviors what patients prefer and confidence in communicating with patients.
Effective communication regarding death and dying in pediatrics is a vital component of any quality palliative care service. The goal of the current study is to understand communication among health care professionals regarding death and dying in children. The three hypotheses tested were: (1) hospital staff (physicians of all disciplines, nurses, and psychosocial clinicians) that utilize consultation services are more comfortable communicating about death and dying than those who do not use such services, (2) different disciplines of health care providers demonstrate varying levels of comfort communicating about a range of areas pertaining to death and dying, and (3) health care staff that have had some type of formal training in death and dying are more comfortable communicating about these issues.
A primary analysis of a survey conducted in a tertiary care teaching children's hospital.
Health care professionals who felt comfortable discussing options for end of life care with colleagues also felt more comfortable: initiating a discussion regarding a child's impending death with his/her family (r = 0.42), discussing options for terminal care with a family (r = 0.58), discussing death with families from a variety of ethnic/cultural backgrounds (r = 0.51), guiding parents in developmentally age-appropriate discussions of death with their children (r = 0.43), identifying and seeking advice from a professional role model regarding management concerns (r = 0.40), or interacting with a family following the death of a child (r = 0.51). Among all three disciplines, physicians were more likely to initiate discussions with regards to a child's impending death (F = 13.07; p = 0.007). Health care professionals that received formal grief and bereavement training were more comfortable discussing death.
Significance of the results:
The results demonstrated that consultation practices are associated with a higher level of comfort in discussing death and dying in pediatrics.
Caring for terminally ill patients is complex, stressful, and at times distressing for nurses. Acute care hospitals continue to be the predominant place of death for terminally ill patients in most Western countries. The objective of the present literature review was to explore and gain an in-depth understanding of the experience of providing end-of-life (EOL) care by medical-surgical RNs working in acute care hospitals, to identify knowledge gaps, and to recommend future research.
A comprehensive literature review was conducted using the following electronic databases: CINAHL, MEDLINE, and PsyInfo (from 1992 to October 2012).
The findings from the 16 reviewed studies suggest that nurses felt a strong commitment to help terminally ill patients experience a good death. Nurses reported feeling deeply rewarded and privileged to share the EOL experience with patients/families. Organizational and individual factors influenced nurses' experience. Important challenges were associated with managing the divergent needs of a mixed patient load (i.e., curative and palliative care patients) in a biomedical culture of care that is heavily oriented toward cure and recovery. In this culture, nurses' emotional work and ideals of good EOL care are often not recognized and supported.
Significance of results:
Managerial and organizational support that recognize the centrality of emotional work nurses provide to dying patients is needed. More research exploring ways to improve communication among nurses and medical colleagues is essential. Finally, a critical examination of the ideological assumptions guiding nurses' practice of EOL care within the context of acute care is recommended to help reveal their powerful influence in shaping nurses' overall understanding and experience of EOL care.
Palliative care is a model of care that aims to improve quality of life (QOL) for patients and their families/carers who are facing the challenges associated with a life limiting illness (WHO, 2012). Until recently, palliative care has been seen to be largely focused on the medical management of specific symptoms, with little or no consideration given to the patient's occupational identity and goals.
Occupational therapy is a profession whose core philosophy is grounded in occupational participation. Occupational therapists have the skills and expertise to incorporate an individual's occupational performance goals into their treatment plan, thereby helping people to participate in personally meaningful occupations, within the limitations of their illness and physical capacity.
The present article aims to illustrate (using case-study examples) how personally meaningful occupational participation can better support an acute model of palliative care practice, resulting in better patient outcomes and improved quality of life for both patients and their carers.
The purpose of this case series was to describe patients with aberrant drug-related behaviors and similar patterns of dose escalation in whom interdisciplinary assessment revealed different bases for their dose increases.
During the period from December 26 to December 30, 2011, the medical records of two patients with opioid-related aberrant behaviors were reviewed.
We described two patients with a significant cancer history and different comorbidities who presented with different aberrant drug-related behaviors and opioid requirements.
Significance of Results:
Opioid-related aberrant behaviors can be interpreted in different ways, and two of the more common syndromes in cancer patients are chemical coping and pseudoaddiction. In advanced cancer patients, the boundaries between these conditions are not as clear, and diagnosis is often made retrospectively. Furthermore, there have been relatively limited studies describing these two syndromes. Thus, they continue to pose a diagnostic and treatment challenge that requires different approaches for effective management of symptoms. The key characteristic between the two syndromes is that the behaviors displayed in chemical coping are motivated by obtaining opioids to relieve psychosocial distress, while in pseudoaddiction these behaviors are motivated by uncontrolled nociceptive input. Close monitoring of the pain syndromes, aberrant behaviors, and opioid requirements over several visits is usually necessary to distinguish the two syndromes.