Research in Terminally Ill Patients

2018 ◽  
Author(s):  
Sriram Yennurajalingam
Keyword(s):  
Clinical Trial ◽  
Palliative Care ◽  
Chronic Disease ◽  
Ethical Issues ◽  
Treatment Options ◽  
Terminally Ill ◽  
Symptom Burden ◽  
Terminally Ill Patients ◽  
Disease States ◽  
Key Concepts

It is important to conduct quality palliative care research so as to improve care in this distressed population. However, research in palliative care is challenging due to the high symptom burden and issues related to it, including poor accrual, and higher dropout rates compared to those of patients with chronic disease states. Additionally, patients receiving palliative care are considered a vulnerable population due to the presence of severe symptom distress and limited treatment options available. It is therefore important to address all ethical issues related to participation in a clinical trial. This chapter reviews key concepts with regard to research in terminally ill patients.

scholarly journals Symptom clusters and their influence on prognosis using EORTC QLQ-C15-PAL scores in terminally ill patients with cancer

2021 ◽  
Author(s):  
Nanako Koyama ◽  
Chikako Matsumura ◽  
Yuuna Tahara ◽  
Morito Sako ◽  
Hideo Kurosawa ◽  
...  
Keyword(s):  
Palliative Care ◽  
Terminally Ill ◽  
Symptom Clusters ◽  
Rank Test ◽  
Appetite Loss ◽  
Patients With Cancer ◽  
Terminally Ill Patients ◽  
Log Rank Test ◽  
Eortc Qlq ◽  
Cluster 2

Abstract Purpose The aims of the present study were to investigate the symptom clusters in terminally ill patients with cancer using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative Care (EORTC QLQ-C15-PAL), and to examine whether these symptom clusters influenced prognosis. Methods We analyzed data from 130 cancer patients hospitalized in the palliative care unit from June 2018 to December 2019 in an observational study. Principal component analysis was used to detect symptom clusters using the scored date of 14 items in the QLQ-C15-PAL, except for overall QOL, at the time of hospitalization. The influence of the existence of these symptom clusters and Palliative Performance Scale (PPS) on survival was analyzed by Cox proportional hazards regression analysis, and survival curves were compared between the groups with or without existing corresponding symptom clusters using the log-rank test. Results The following symptom clusters were identified: cluster 1 (pain, insomnia, emotional functioning), cluster 2 (dyspnea, appetite loss, fatigue, and nausea), and cluster 3 (physical functioning). Cronbach’s alpha values for the symptom clusters ranged from 0.72 to 0.82. An increased risk of death was significantly associated with the existence of cluster 2 and poor PPS (log-rank test, p = 0.016 and p < 0.001, respectively). Conclusion In terminally ill patients with cancer, three symptom clusters were detected based on QLQ-C15-PAL scores. Poor PPS and the presence of symptom cluster that includes dyspnea, appetite loss, fatigue, and nausea indicated poor prognosis.

Japanese physicians’ experiences of terminally ill patients voluntarily stopping eating and drinking: a national survey

2017 ◽  
Vol 9 (2) ◽  
pp. 143-145 ◽  
Author(s):  
Takuya Shinjo ◽  
Tatsuya Morita ◽  
Daisuke Kiuchi ◽  
Masayuki Ikenaga ◽  
Hirofumi Abo ◽  
...  
Keyword(s):  
Palliative Care ◽  
National Survey ◽  
Clinical Setting ◽  
Deep Sedation ◽  
Terminally Ill ◽  
Treatment Decision ◽  
Mail Questionnaire ◽  
Terminally Ill Patients ◽  
Continuous Deep Sedation

ObjectivesVoluntarily stopping eating and drinking (VSED) could be regarded as a patients’ own non-treatment decision that hastens death, which involves patients voluntarily forgoing food and liquid until death. The aims of this study were to investigate the experience of home hospice physicians and palliative care specialists who care for patients during VSED in Japan, and their opinions on continuous deep sedation (CDS) as a means to relieve patient symptoms during VSED.Methods219 home hospice physicians and 695 palliative care specialists across Japan were surveyed by mail questionnaire in 2016.ResultsA total of 571 (62%) responses were analysed. A total of 185 (32%) had experience of patients who selected VSED. In response to questions about CDS to provide relief to patients during VSED, the number of physicians who replied that CDS was acceptable was 88 (15%).ConclusionsIn Japan, 32% of physicians surveyed replied that they had experience of caring for patients during VSED in a clinical setting and 15% considered CDS acceptable.

scholarly journals Preferences for place of care and place of death: What, how, when and who to ask?

2019 ◽  
Author(s):  
Katrin Gerber ◽  
BARBARA HAYES ◽  
CHRISTINA BRYANT
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Final Stage ◽  
Terminally Ill ◽  
Healthcare Systems ◽  
Place Of Death ◽  
Preference Assessments ◽  
Terminally Ill Patients ◽  
Key Questions

As healthcare systems worldwide are confronted with increasing numbers of ageing and terminally ill patients, the topic of where people want to spend their last days has received considerable attention. However, the strategies that researchers and clinicians use to capture these end-of-life views vary greatly in four key questions. These include: what, how, when and who to ask about location preferences. We will argue that how researchers and clinicians choose to answer these questions directly influences their findings. Based on these considerations, we will highlight ways to improve future palliative care and empirical end-of-life studies by addressing the precision, methods, timing and sources of preference assessments. Only when we are able to accurately identify where people want to spend their last days, can we begin to meet the needs of patients as they approach the final stage of their lives.

Spiritual dimension in palliative care from the perspective of Thai palliative caregivers

2020 ◽  
Vol 26 (2) ◽  
pp. 70-74
Author(s):  
Pilaiporn Sukcharoen ◽  
Nanchatsan Sakunpong ◽  
Kantita Sripa
Keyword(s):  
Palliative Care ◽  
Health Professionals ◽  
Terminally Ill ◽  
Self Awareness ◽  
Terminally Ill Patients ◽  
Care Health ◽  
To Receive ◽  
Further Development ◽  
Depth Interviews

Background: In Thailand, most terminally ill patients die in hospital and are looked after by health professionals. Terminally ill patients tend to receive physical care only, while in the main, spiritual care is neglected. This study aimed to explore spirituality in palliative care health professionals and spiritual leaders in the Thai Buddhist context. Method: In this qualitative case study, seven experienced palliative caregivers took part in in-depth interviews. Thematic analysis and a trustworthiness process were used to analyse the data. Findings: Three themes emerged: (1) the ability for self-awareness and faith; (2) acceptance and compassion for others; and (3) spiritual behaviour while nursing. Conclusion: The results revealed the meaning of spirituality and the necessary characteristics for spirituality in palliative care for the participants, which could serve as a basis for further development.

Real-world evidence highlights sizeable gap in adopting early palliative care referral in patients with advanced cancers.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e24147-e24147
Author(s):  
Suzanne Cole ◽  
Sarah Storie ◽  
Sonya Owens ◽  
LaShanta Gipson ◽  
Michael Hardy ◽  
...  
Keyword(s):  
Palliative Care ◽  
Real World ◽  
Qualitative Methodology ◽  
Treatment Options ◽  
Community Setting ◽  
Symptom Burden ◽  
Community Practice ◽  
Related Factors ◽  
Early Integration ◽  
Early Palliative Care

e24147 Background: Early referral to palliative care (PC) for patients w/ adv cancer is supported by compelling evidence from large RCTs demonstrating a lower symptom burden, higher QOL, and increased OS. However, these studies reflect pts who have self-selected to accept a PC referral and attend a PC visit. WHO/NCCN/ASCO guidelines support early integration of PC. We sought to characterize the referral patterns in our heme/onc practice to identify and mitigate the barriers to early PC adoption in the community setting. We began a concerted effort to discuss early PC referral w/ pts recently diagnosed w/ adv cancer at the time systemic therapy was initiated. Methods: To ensure real-world applicability of this study, we identified a large satellite clinic of a major academic center w/ access to PC on the main campus (located 20 miles from the satellite clinic). We retrospectively reviewed new pts age 18y+ w/ adv cancer, characterized PC referrals and outcomes. Using qualitative methodology, we identified pt-reported barriers to accepting PC care. Results: 407 new pts were seen; 168 w/ benign heme, 145 w/ early cancers, 94 w/ adv cancers. Of the 94 pts w/ adv cancers, 25 pts had one-time 2ndopinion visits, and 16 pts were not candidates for, or did not desire cancer treatment and directly enrolled on hospice. Our analysis cohort consisted of 53 pts w/ adv cancer pursuing life prolonging therapy. At initiation of treatment, 57 % (n=30) were not offered a PC referral, 22% (n=12) received a PC referral and attended the appt, however 21% (n=11) received a PC referral but did not attend the appt. A qualitative analysis of the 11 patients referred to early PC who did not attend the appt revealed; 5 patients scheduled an appt but did not attend (3-unknown reason, 2-hospitalized during appt, 1-lack of transportation), 2 pts were unreachable, and 4 pts were contacted but declined to schedule stating: “I feel pressured” “I want to hear what other treatment options I have” “I want to be treated first and then see if I need it” "I am overwhelmed with too many new doctors and visits". Conclusions: Despite the benefit of early PC referral in pts w/ adv cancer, we identified a considerable gap in its adoption in our community practice despite access to proximate PC clinic. Further studies are under design to address institutional and pt-related factors to improve real-world adoption of this critical service.

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