scholarly journals Palliative Care and Nutritional Support for Eating-related Distress in Patients with Advanced Cancer and Their Family Members

2018 ◽  
Vol 13 (2) ◽  
pp. 169-174
Author(s):  
Koji Amano ◽  
Tatsuya Morita
Keyword(s):  
Palliative Care ◽  
Advanced Cancer ◽  
Nutritional Support ◽  
Family Members

How family caregivers assist with upstream health care decision making by community-dwelling persons with advanced cancer: A qualitative study.

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 13-13
Author(s):  
J Nicholas Dionne-Odom ◽  
Deborah Ejem ◽  
Rachel Wells ◽  
Amber Barnato ◽  
Richard Taylor ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Metastatic Cancer ◽  
Family Members ◽  
Community Dwelling ◽  
Healthcare Decision ◽  
Healthcare Decision Making ◽  
Care Decision

13 Background: In the palliative care context, the family caregiver role in patients’ healthcare decision-making has focused on being a surrogate decision-maker at end of life. Less is known about family caregiver’s role in supporting upstream patient decision-making in advanced cancer. Methods: Qualitative descriptive study consisting of one-on-one, semi-structured interviews with persons with metastatic cancer and their family caregivers. We elicited family members’ perspectives on how they assist their relatives with any current and prospective healthcare decisions. Transcribed interviews were analyzed using a thematic analysis approach. Co-investigators reviewed and refined themes. Results: Caregivers (n = 20) averaged 56 years of age and were mostly female (95%), White (85%), and the patient’s partner/spouse (70%). Patients (n = 18) averaged 58 years of age and were mostly male (67%) in “fair” or “poor” health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients’ decision-making were: 1) seeking information about the cancer, its trajectory, and different treatments options; 2) identifying treatment and disease decision points, including decisions about seeking emergent care; 3) ensuring family members have a common understanding of the patient’s plan of care; 4) initiating and facilitating conversations with patients about coping, values, beliefs, and “what if” scenarios about current and potential future health states and treatments; 5) implementing choices (e.g., providing transportation) and addressing “spillover” decisions (e.g., work arrangements) resulting from medical treatment choices; and 6) making upstream healthcare decisions on behalf of patients who preferred to have decisions made by their family caregivers. Conclusions: These data highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making. Optimizing these roles may represent novel targets for early palliative care decision support interventions for family caregivers.

Family Members’ Care Expectations, Care Perceptions, and Satisfaction with Advanced Cancer Care: Results of a Multi-Site Pilot Study

1997 ◽  
Vol 13 (4) ◽  
pp. 5-13 ◽  
Author(s):  
Linda J. Kristjanson ◽  
Anne Leis ◽  
Priscilla M. Koop ◽  
K.C. Carrière ◽  
Bryan Mueller
Keyword(s):  
Palliative Care ◽  
Advanced Cancer ◽  
Family Members ◽  
Family Care ◽  
Assessment Tools ◽  
Advanced Cancer Patients ◽  
Family Assessment Device ◽  
Hospital Units ◽  
General Functioning ◽  
Care Satisfaction

Psychometric properties of assessment tools designed for use with English-speaking family members of advanced cancer patients in different care settings and different geographic locations were evaluated in this study. The robustness of the theoretical framework guiding the study and the factors identified with care satisfaction were also tested. Seventy-two family members drawn equally from medical hospital units, palliative care units, and home care programs in Alberta, Saskatchewan, and Manitoba participated. Instruments used included the F-Care Expectations Scale, F-Care Perceptions Scale, FAMCARE Scale, and the General Functioning Scale of the Family Assessment Device. All four tools yielded acceptable reliability estimates. Discrepancy theory predicted family care satisfaction in a highly significant manner (p<0.0001). Family members of patients who had been diagnosed for longer than two years had more positive perceptions of palliative care than did family members of patients diagnosed for less than two years (p=0.05). Older family members reported better family functioning than younger family members (p<0.001). Spouses reported less discrepancy between care expectations and perceptions than did other relatives (p<0.05).

scholarly journals Chinese Physicians’ Perceptions of Palliative Care Decision-making for Advanced Cancer Patients: A Qualitative Analysis at a Tertiary Hospital in Changsha, China

2021 ◽  
Author(s):  
Jessica Hahne ◽  
Xiaomin Wang ◽  
Rui Liu ◽  
Yuqiong Zhong ◽  
Xin Chen ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Medical Training ◽  
Family Members ◽  
Tertiary Hospital ◽  
Advanced Cancer Patients ◽  
Care Access ◽  
Care Decision

Abstract Background: Little previous research has been conducted outside of major cities in China to examine how physicians currently perceive palliative care, and to identify specific goals for training as palliative care access expands. This study explored physicians’ perceptions of palliative care decision-making for advanced cancer patients in Changsha, China.Methods: We conducted semi-structured qualitative interviews with physicians (n=24) specializing in hematology or oncology at a tertiary hospital. Results: Most physicians viewed palliative care as equivalent to end-of-life care, while a minority considered it possible to integrate palliative care with active treatment. Almost all physicians maintained separate conversations about palliative care with family members and patients, communicating more directly with family members than with patients about palliative care decisions. Physicians described experiencing ethical tension between the desire of family members to protect the patient from knowing they have advanced cancer, and the patient’s “right to decide” about palliative treatment. Physicians varied overall regarding perceptions of the role they should have in palliative care decision-making.Conclusions: As palliative care access expands in China, medical training should encourage earlier integration of palliative care for advanced cancer, address ethical issues faced by physicians communicating about palliative care, and establish guidance on the role of the physician in palliative care decision-making.

Need for nutritional support in advanced cancer patients with cachexia: A survey in palliative care settings.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 100-100
Author(s):  
Koji Amano ◽  
Tatsuya Morita ◽  
Jiro Miyamoto ◽  
Teruaki Uno ◽  
Hirofumi Katayama ◽  
...  
Keyword(s):  
Palliative Care ◽  
Parenteral Nutrition ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Nutritional Support ◽  
Cancer Cachexia ◽  
Tube Feeding ◽  
Advanced Cancer Patients ◽  
Nutrition And Hydration ◽  
To Receive

100 Background: Few studies have investigated the need for nutritional support in advanced cancer patients in palliative care settings.The aim of this survey is to examine the relationship between the need for nutritional support and cancer cachexia, specific needs, perceptions, and beliefs. Methods: We conducted a questionnaire in outpatient service/palliative care teams/palliative care units. Patients were classified into two groups: 1) Non-cachexia/Pre-cachexia and 2) Cachexia/Refractory cachexia. Results: A total of 117 out of 121 patients responded (96.7%). A significant difference was observed in the need for nutritional support between the groups: Non-cachexia/Pre-cachexia (32.7%) and Cachexia/Refractory cachexia (53.6%) (p = 0.031). The specific needs of patients requiring nutritional support were nutritional counseling (93.8%), ideas to improve food intake (87.5%), oral nutritional supplements (83.0%), parenteral nutrition and hydration (77.1%), and tube feeding (22.9%). The top perceptions regarding the best time to receive nutritional support and the best medical staff to provide nutritional support were “when anorexia, weight loss, and muscle weakness become apparent” (48.6%) and “nutritional support team” (67.3%), respectively. The top three beliefs of nutritional treatments were “I do not wish to receive tube feeding” (78.6%), “parenteral nutrition and hydration are essential” (60.7%), and “parenteral hydration is essential” (59.6%). Conclusions: Patients with cancer cachexia had a greater need for nutritional support. Advanced cancer patients wished to receive nutritional support from medical staff with specific knowledge when they become unable to take sufficient nourishment orally and the negative impact of cachexia becomes apparent. Additionally, most patients wished to receive parenteral nutrition and hydration.

Prognostic Awareness in Adult Oncology and Palliative Care

2020 ◽  
Vol 38 (9) ◽  
pp. 877-884 ◽  
Author(s):  
Phyllis N. Butow ◽  
Josephine M. Clayton ◽  
Ronald M. Epstein
Keyword(s):  
Palliative Care ◽  
Advanced Cancer ◽  
Family Members ◽  
Evidence Base ◽  
Clear Communication ◽  
Doctor Communication

Communicating prognosis clearly and empathically can foster accurate prognostic awareness in patients with advanced cancer and their family members. Whereas patients and doctors desire clear prognostic communication, it presents many challenges in oncologic and palliative care settings. Patients with advanced cancer often have poor prognostic awareness as a result of deficiencies in doctor communication and understandable—and potentially adaptive—attempts by patients and families to reduce the threat of death and maintain hope. Interventions to promote prognostic discussion have largely succeeded in increasing the frequency, but not necessarily the quality, of such discussions, yet have failed to improve prognostic awareness. Because clear communication of prognosis is an ethical mandate, more research is needed to provide an evidence base for teaching and practice in this area.

Barriers to goals of care discussion and early palliative care referral in patients with advanced cancer: A community oncology clinic survey.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e19199-e19199
Author(s):  
Sandhya Maradana ◽  
Yugandhara Kate ◽  
Deepali Pandey ◽  
Masood Pasha Syed ◽  
Pruthvi Raj Velamala ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Advanced Cancer ◽  
Health Care Providers ◽  
Family Members ◽  
Outpatient Setting ◽  
Care Providers ◽  
Goals Of Care ◽  
Early Palliative Care ◽  
Important Barrier

e19199 Background: Earlier discussion of end-of-life (EOL) preferences in patients with advanced cancer is associated with less aggressive EOL care. Most terminally-ill patients have not discussed their goals of care (GOC) with their healthcare providers before becoming acutely ill. Identifying various barriers in the outpatient setting might help improve GOC discussion and EOL experience for patients with advanced cancer. Methods: This cross sectional survey was designed after a thorough literature review and distributed to internal medicine residents, oncologists and oncology nurses involved in patient care in an outpatient cancer center at a community hospital. Barriers to GOC discussions and early palliative care (PC) referral were assessed on a 7-point Likert scale (1 = extremely unimportant; 7 = extremely important). Most important barrier was defined by people ranking it as very important or extremely important (6 or 7). A total of 33 health care providers were included in the final analysis. Trends were reported using descriptive statistics. Results: Patient/family related barriers were ranked the highest overall. 88% of respondents perceived patient’s difficulty in accepting prognosis as most important, followed by lack of agreement among family members (82%) and patient wanting to be 'aggressive' (82%). Among groups, 100% (6 of 6) oncologists perceived patient wanting to be ‘aggressive’ as the most important barrier, whereas disagreement among family members and patient’s difficulty in accepting poor prognosis was perceived as most important by 88% (7 of 8) nurses and 84% (16 of 19) residents respectively. Nurses also ranked patient's difficulty in understanding limitations of life sustaining treatments high. 67% of respondents, especially nurses and residents, perceived lack of training to have GOC conversations as the most important health care provider related barrier. Patient’s refusal for PC services was rated as the most important barrier for early PC referral by 61% of respondents, however, oncologists (100%) ranked lack of outpatient PC services the highest. Conclusions: These results emphasize the need for better resources to improve communication between health care providers and cancer patients in an outpatient setting. Initiatives such as formal training and targeted education in communication about GOC to health care providers can be instrumental in addressing these barriers. Integration of outpatient palliative care services into community-based oncology can be beneficial.

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