Non-curative surgical oncology: postoperative needs and preferences

2021 ◽  
pp. bmjspcare-2020-002789
Author(s):  
Lene Seibæk ◽  
Henriette Vind Thaysen ◽  
Kirsten Elisabeth Lomborg
Keyword(s):  
Palliative Care ◽  
Well Being ◽  
Surgical Oncology ◽  
Peritoneal Metastases ◽  
Cancer Surgery ◽  
Semistructured Interview ◽  
Care Needs ◽  
Curative Surgery ◽  
Interview Guide ◽  
Research Interviews

ObjectiveWhen intended curative cancer surgery is not completed, the postoperative transition to palliative care represents a prognostic landmark to patients and their families. In patients referred for highly specialised surgery for peritoneal metastases from the intestinal tract and ovaries, surgery is not performed in approximately 25%. Still, little is known of their postoperative needs and preferences.MethodsWe performed 14 qualitative research interviews with 12 patients (four men and eight women, aged 41–85 years) undergoing surgery for peritoneal metastases; five of these were together with a relative. Five of the participants had ovarian, and seven had colorectal cancer (four men and seven women). The interviews followed a semistructured interview guide, were audio recorded, transcribed verbatim and analysed using meaning condensation.ResultsPatients accepted the surgeon’s decision of refraining from the intended surgery. During the postoperative period, when realising the prognostic consequences, their needs changed rapidly, in some cases from day to day, and gradually they developed a reoriented focus on their lives. The findings were framed by two themes dealing with ‘Change in treatment strategy’ and ‘Physical and psychosocial aspects of not undergoing curative surgery’.ConclusionWhen curative cancer surgery is not completed as intended, patient-centred communication is essential for patients’ psychosocial reorientation and quality of life. Further, to support their well-being and action competences, patients have a need for basic supportive care and physical restitution. Finally, high-quality postoperative palliative care needs to be coordinated, which requires staff training and reorganisation of pathways.

Verbalized desire for death or euthanasia in advanced cancer patients receiving palliative care

2014 ◽  
Vol 13 (2) ◽  
pp. 295-303 ◽  
Author(s):  
Ernest Güell ◽  
Adelaida Ramos ◽  
Tania Zertuche ◽  
Antonio Pascual
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Terminally Ill ◽  
Well Being ◽  
Semistructured Interview ◽  
Advanced Cancer Patients ◽  
Terminally Ill Cancer Patients ◽  
Symptom Intensity ◽  
Edmonton Symptom Assessment Scale ◽  
Desire To Die

AbstractObjective:We aimed to address the prevalence of desire-to-die statements (DDSs) among terminally ill cancer patients in an acute palliative care unit. We also intended to compare the underlying differences between those patients who make desire-to-die comments (DDCs) and those who make desire-for-euthanasia comments (EUCs).Method:We conducted a one-year cross-sectional prospective study in all patients receiving palliative care who had made a DDC or EUC. At inclusion, we evaluated symptom intensity, anxiety and depression, and conducted a semistructured interview regarding the reasons for these comments.Results:Of the 701 patients attended to during the study period, 69 (9.8%; IC95% 7.7–12.3) made a DDS: 51 (7.3%) a DDC, and 18 (2.5%) an EUC. Using Edmonton Symptom Assessment Scale (ESAS) DDC group showed higher percentage of moderate-severe symptoms (ESAS > 4) for well-being (91 vs. 25%; p = 0.001), depression (67 vs. 25%; p = 0.055), and anxiety (52 vs. 13%; p = 0.060) than EUC group. EUC patients also considered themselves less spiritual (44 vs. 84%; p = 0.034). The single most common reason for a DDS was pain or physical suffering, though most of the reasons given were nonphysical.Significance of results:Almost 10% of the population receiving specific oncological palliative care made a DDC (7.3%) or EUC (2.5%). The worst well-being score was lower in the EUC group. The reasons for both a DDC and EUC were mainly nonphysical. We find that emotional and spiritual issues should be identified and effectively addressed when responding to a DDS in terminally ill cancer patients.

scholarly journals The Role of Palliative Care in Oncology

2017 ◽  
Vol 34 (04) ◽  
pp. 307-312 ◽  
Author(s):  
Rajiv Agarwal ◽  
Andrew Epstein
Keyword(s):  
Palliative Care ◽  
Symptom Burden ◽  
Well Being ◽  
Care Needs ◽  
Patients With Cancer ◽  
Living With Cancer ◽  
Palliative Care Needs ◽  
Shed Light

AbstractPalliative care is a powerful adjunct to oncology that adds distinct value to the physical, mental, and psychosocial well-being of patients living with cancer. Its expanding role and integration with standard oncologic care has proven clinical benefit, as the practice of palliative care can help alleviate symptom burden, enhance illness and prognostic understanding, and improve both the quality of life and overall survival for patients. The primary aim of this review article is to highlight the significant interplay between palliative care and oncology and, in doing so, shed light on the areas for improvement and modern challenges that exist to meet the complex palliative care needs of patients with cancer.

Needs, Concerns, Strategies, and Advice of Daily Home Hemodialysis Caregivers

2013 ◽  
Vol 23 (6) ◽  
pp. 644-663 ◽  
Author(s):  
Janet L. Welch ◽  
Charlotte Thomas-Hawkins ◽  
Tamilyn Bakas ◽  
Susan M. McLennon ◽  
Doris M. Byers ◽  
...  
Keyword(s):  
Intervention Program ◽  
Emotional Responses ◽  
Well Being ◽  
Semistructured Interview ◽  
Home Hemodialysis ◽  
Telephone Interviews ◽  
Interview Guide ◽  
Kidney Replacement Therapy ◽  
Supportive Interventions ◽  
Health And Well Being

Improved patient outcomes have led to increased international interest in daily home hemodialysis as a kidney replacement therapy. Daily home hemodialysis often requires the assistance of a caregiver during and between treatments. Understanding the needs and concerns of caregivers of persons on daily home hemodialysis will inform the design of supportive interventions to improve caregiver retention and maintain their health and well-being. Using a descriptive qualitative design, the purpose of this study was to identify and describe the needs, concerns, strategies, and advice of family caregivers. Twenty-one caregivers were interviewed; five of these individuals were former caregivers of patients who had returned to outpatient hemodialysis. Data were collected via audio-recorded telephone interviews following a semistructured interview guide with five open-ended questions. A content analysis approach was used to code and analyze the data. Caregivers described needs, concerns, and strategies and offered advice in five predetermined major categories. Major findings included a need for respite services and a need for interventions to manage the emotional responses to caregiving. This study provides valuable information about relevant areas to consider when developing an intervention program for daily home hemodialysis caregivers.

scholarly journals Understanding family carer experiences of advanced dementia caregiving in India: towards a vision for integrated practice

2020 ◽  
Vol 28 (4) ◽  
pp. 337-348
Author(s):  
Louise Ritchie ◽  
Anna Jack-Waugh ◽  
Elsa Sanatombi Devi ◽  
Binil V ◽  
Anice George ◽  
...  
Keyword(s):  
Palliative Care ◽  
Focus Groups ◽  
Local Community ◽  
Well Being ◽  
Family Carer ◽  
Advanced Dementia ◽  
Family Carers ◽  
Care Needs ◽  
Content Type ◽  
Practitioner Education

PurposeMany individual and family hardships are associated with poorly understood palliative care needs arising from advanced dementia within India. The purpose of this paper is to explore the experiences of people in India affected by advanced dementia and to shape educational approaches for practitioners and the local community.Design/methodology/approachThree focus groups with family carers of people (n = 27) with advanced dementia were undertaken with local communities in South India. One focus group was carried out in English and two in the local language (Kannada) and translated to English.FindingsThe findings of the focus groups are presented in four themes, conditions of caring, intersecting vulnerabilities, desperate acts of care and awareness of education and training needs. These themes highlight the challenges faced by family carers of people with advanced dementia and describe the potential harm, abuse and poor mental well-being facing both the person with dementia and the family carer as a result of their situation.Research limitations/implicationsThere is a need to explore ways to ensure inclusivity and sensitivity in the research process and enable equal participation from all participants.Practical implicationsThe findings highlight a lack of support for family carers of people with advanced dementia and demonstrate the need for dementia-specific integrated and palliative care approaches in India.Originality/valueThis paper provides insight into the experiences and challenges facing family caregivers of people living with advanced dementia in India to shape practitioner education in a way that will underpin effective dementia-specific palliation and integrated services.

scholarly journals P083: Developing an interview guide to explore physicians perceptions about unmet palliative care needs in Albertas emergency departments

CJEM ◽  
2018 ◽  
Vol 20 (S1) ◽  
pp. S86-S86
Author(s):  
M. Kruhlak ◽  
C. Villa-Roel ◽  
B. H. Rowe ◽  
P. McLane
Keyword(s):  
Palliative Care ◽  
Emergency Departments ◽  
Study Groups ◽  
Severe Illness ◽  
Care Needs ◽  
Initial Interview ◽  
Qualitative Researcher ◽  
Interview Guide ◽  
Pilot Work ◽  
Qualitative Component

Introduction: Many patients with advanced or end-stage diseases spend months or years in need of optimal physical, spiritual, psychological, and social care. Despite efforts to provide community care, those with severe illness often present to emergency departments (EDs). This abstract presents preliminary results on the qualitative component of an ED-based mixed methods pilot study. The objective of this qualitative component is to develop and test an interview guide to collect qualitative data on physicians perceptions about unmet palliative care (PC) and end of life care (EOLC) needs in EDs. Methods: A scan of the literature on PC and EOLC in EDs was conducted to develop propositions about what might be expected through the clinician interviews, as well as an interview guide. The interview guide will be piloted with up to four ED physicians. During the interview each physician will describe a case where a PC patient had unmet care needs and the impacts they believe these unmet needs had on patients and families. Interview transcripts will be coded descriptively and then conceptually themed by the researcher who conducted the interview. Interpretations drawn from the interview data, with supporting quotations and comparison to initial propositions, will be presented to members of the research team with experience providing ED care, for further interpretation. Advice of a second trained qualitative researcher will be sought on the richness and relevance of data obtained and how the interview guide could be improved to elicit richer and/or more relevant data. A revised interview guide will be produced alongside rationales for why the proposed revisions will elicit richer data. Results: After reviewing 27 articles on PC and EOLC, propositions and an initial interview guide were developed based on themes from the literature and the study groups experiences. One of the primary results of this pilot work will be an enhanced understanding of PC and EOLC in our local ED context, as reflected in an interview guide revised to elicit richer data than achieved through the initial interview guide. Conclusion: The comparison between our propositions and the study findings will help identify how biases may have influenced interview questions and/or the interpretation of the data. This pilot work to develop an interview guide enhances the rigour of this qualitative work on unmet PC and EOLC needs in EDs.

Community-led and/or focused initiatives to support family carers within a palliative care context: An integrative review

2018 ◽  
Vol 33 (2) ◽  
pp. 250-256 ◽  
Author(s):  
Anita Chung ◽  
Aileen Collier ◽  
Merryn Gott
Keyword(s):  
Palliative Care ◽  
Grey Literature ◽  
Well Being ◽  
Research Literature ◽  
Integrative Review ◽  
Empirical Literature ◽  
Family Carers ◽  
Care Needs ◽  
Palliative Care Needs ◽  
Support Family

Background: Public health approaches to palliative care prioritise community-focused initiatives to support people with palliative care needs and their families. The nature and extent of these initiatives have not previously been reported. Aim: To identify community-led and/or focused initiatives that have been developed to support family carers of people with palliative care needs and for which evaluation information is reported in the empirical literature. Design: An integrative study design was undertaken using systematic methods. Data sources: CINAHL, Medline, PsycINFO, Embase, Cochrane, Sociological Abstracts, Proquest Social Science Database, and grey literature were searched using standardised search terms. Results: Two quantitative, two qualitative and two mixed method studies were identified ( n = 6). All community initiatives identified were professionally led, although three had consumer input. Most aimed to improve carer psychosocial well-being and all were reported to have been beneficial. Conclusions: This integrative review identified only six community-focused and evaluated initiatives supporting family carers in the international palliative care research literature. Further evaluation is needed. However, appropriate evaluation methods and reporting require further discussion and debate between all stakeholders. Service users and communities themselves must be central to this process.

Psychiatric symptoms in palliative care

2019 ◽  
pp. 637-656
Keyword(s):  
Palliative Care ◽  
Psychiatric Symptoms ◽  
Emotional Health ◽  
Well Being ◽  
Emotional Reactions ◽  
Care Needs ◽  
The Common ◽  
Palliative Care Needs ◽  
Health And Well Being

This chapter covers the common psychiatric symptoms experienced in people with palliative care needs. It covers the challenges of diagnosis in this particular population and the need to take account of both the patients’ own coping mechanisms and the health challenges that they are facing as they approach the end of life. Palliative care is the provision of holisitic management to individuals and their carers/families who are facing issues associated with life-limiting illness. It embraces a biopsychosociocultural and spiritual approach with emphasis on quality of life. Consequently, the maintenance of psychological and emotional health and well-being is an essential component in the provision of comprehensive care. Initial diagnosis—and the circumstances surrounding this—is a time of great challenge for most patients, and the potential for strong emotional reactions and intense feelings of distress is heightened.

scholarly journals Feasibility and Acceptability of Distress Screening for Family Caregivers at a Cancer Surgery Center

2019 ◽  
pp. 159-169
Keyword(s):  
Supportive Care ◽  
Family Caregivers ◽  
Screening Program ◽  
Self Care ◽  
Cancer Surgery ◽  
Semistructured Interview ◽  
Distress Screening ◽  
Care Needs ◽  
Point Of Entry ◽  
Surgery Center

Objectives: To determine the feasibility and acceptability of a validated electronic distress screening program for cancer caregivers. Sample & Setting: 17 informal caregivers presenting with a patient with cancer to an ambulatory cancer surgery center. Methods & Variables: Caregivers completed the CancerSupportSource®—Caregiver screening and a brief semistructured interview concerning the screening. Results: Caregivers described the screening as straightforward and comprehensive. They endorsed concerns about their self-care needs but were most likely to request information or a referral for patient-focused concerns. Referrals generated from the program are likely viably addressed with existing supportive care resources. Implications for Nursing: Brief, caregiver-focused distress screening is perceived positively by caregivers. Caregivers indicated that they felt it validated the importance of their role and highlighted the hospital’s efforts to continually improve care. This screening program may be particularly beneficial in ambulatory surgical centers to efficiently identify caregivers with concerns and provide a point of entry to remediate these concerns.

scholarly journals When and why should patients with hematologic malignancies see a palliative care specialist?

Hematology ◽  
2015 ◽  
Vol 2015 (1) ◽  
pp. 471-478 ◽  
Author(s):  
Thomas W. LeBlanc ◽  
Areej El-Jawahri
Keyword(s):  
Palliative Care ◽  
Randomized Clinical Trials ◽  
Psychosocial Support ◽  
Treatment Decision ◽  
Well Being ◽  
Hematologic Malignancies ◽  
Care Practice ◽  
Care Needs ◽  
Early Integration ◽  
Patients With Cancer

Abstract Palliative care is a multidisciplinary approach to symptom management, psychosocial support, and assistance in treatment decision-making for patients with serious illness and their families. It emphasizes well-being at any point along the disease trajectory, regardless of prognosis. The term “palliative care” is often incorrectly used as a synonym for end-of-life care, or “hospice care”. However, palliative care does not require a terminal diagnosis or proximity to death, a misconception that we will address in this article. Multiple randomized clinical trials demonstrate the many benefits of early integration of palliative care for patients with cancer, including reductions in symptom burden, improvements in quality-of-life, mood, and overall survival, as well as improved caregiver outcomes. Thus, early concurrent palliative care integrated with cancer-directed care has emerged as a standard-of-care practice for patients with cancer. However, patients with hematologic malignancies rarely utilize palliative care services, despite their many unmet palliative care needs, and are much less likely to use palliative care compared to patients with solid tumors. In this article, we will define “palliative care” and address some common misconceptions regarding its role as part of high-quality care for patients with cancer. We will then review the evidence supporting the integration of palliative care into comprehensive cancer care, discuss perceived barriers to palliative care in hematologic malignancies, and suggest opportunities and triggers for earlier and more frequent palliative care referral in this population.

scholarly journals Palliative care needs of patients with multiple sclerosis in southeast Iran

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Fatemeh Dadsetan ◽  
Parvin Mangolian Shahrbabaki ◽  
Moghadameh Mirzai ◽  
Esmat Nouhi
Keyword(s):  
Multiple Sclerosis ◽  
Palliative Care ◽  
Pearson Correlation ◽  
Well Being ◽  
Teaching Hospitals ◽  
Care Needs ◽  
Cross Sectional ◽  
Significant Difference ◽  
Points Of View ◽  
Palliative Care Needs

Abstract Background Due to the chronic nature of multiple sclerosis, palliative care can play a significant role in improving the quality of life and well-being of the affected patients. An essential step for developing appropriate palliative care for these patients is to determine the types of palliative care necessary, from different points of view. Therefore, this study was conducted to compare the palliative care needs from the nurses’ and patients’ points of view in southeast Iran in 2017. Method This descriptive-analytical cross-sectional study was conducted on 154 nurses working in neurology wards of teaching hospitals associated with Kerman University of Medical Sciences and 132 patients with multiple sclerosis who were referred to these hospitals in southeast Iran. The data were collected using a questionnaire for assessing the palliative care needs of patients with multiple sclerosis. Pearson correlation coefficient, independent t-test, ANOVA, chi-square, and the Mann-Whitney and Kruskal-Wallis tests were used to examine the data. Results Both nurses and patients mentioned the palliative needs of patients with multiple sclerosis in terms of physical, social, spiritual, psychological, and economic dimensions, respectively, but the results showed that there was a significant difference between the two groups in all dimensions of palliative needs (P < 0.0001). Conclusion Given the differences in how patients and nurses prioritize palliative care needs, it is essential to consider the different dimensions of palliative needs of patients with multiple sclerosis.

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