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.

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.

scholarly journals Diversity in Representations and Voices of Terminally Ill People in End-of-Life Documentaries

2021 ◽  
pp. 082585972110139
Author(s):  
Outi J. Hakola
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Race And Ethnicity ◽  
Gender Diversity ◽  
Age Groups ◽  
Terminally Ill ◽  
Public Image ◽  
Terminally Ill Patients ◽  
Hospice And Palliative Care ◽  
Religion And Sexuality

Introduction: The 21st century has seen a proliferation of end-of-life documentary films and television documentaries that contribute to building a public image of hospice and palliative care. The way in which terminally ill patients are represented in these documentaries creates impressions of who is welcomed to receive end-of-life care. These documentary representations have not been previously mapped. Methods: Using quantitative content analysis, I analyzed 35 contemporary Western documentaries and studied their diversity in the representations. I focused on terminally ill patients who are given time and space in the narration to voice their views about the end-of-life process. I paid attention to such elements as gender, race and ethnicity, age, class, religion and sexuality. Results: The documentaries welcomed the representations and voices of terminally ill people. Class, religion and sexuality often had a marginal role in narration. The gender diversity of the representations was quite balanced. Regarding age, the documentaries preferred stories about working age patients for dramatic purposes, yet all age groups were represented. However, the documentaries had an identifiable racial and ethnic bias. With a few exceptions, terminally ill who had a personal voice in the narrations were white. In comparison, racial and ethnic minorities were either absent from most of the documentaries, or their role was limited to illustrations of the general story. Conclusions: End-of-life documentaries provide identifiable access to the patients’ experiences and as such they provide emotionally and personally engaging knowledge about hospice and palliative care. While these representations are people-oriented, they include racial disparities and they focus mostly on the experiences of white terminally ill patients. This bias reinforces the misleading image of hospice and palliative care as a racialized healthcare service.

scholarly journals ‘Food for Life and Palliation (FLiP)’: a qualitative study for understanding and empowering dignity and identity for terminally ill patients in Asia

BMJ Open ◽  
2021 ◽  
Vol 11 (4) ◽  
pp. e038914
Author(s):  
Paul Victor Patinadan ◽  
Geraldine Tan-Ho ◽  
Ping Ying Choo ◽  
Casuarine Xinyi Low ◽  
Andy Hau Yan Ho
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Meaning Making ◽  
A Priori ◽  
Terminally Ill ◽  
Phenomenological Approach ◽  
Clinical Implications ◽  
Framework Analysis ◽  
Terminally Ill Patients ◽  
Palliative Care Setting

ObjectivesWith ‘eating’ posited as Singapore’s domestic pastime, food experiences for Singaporeans constitute national, social, ethnic and personal identities. However, though they form significant parts of Singaporean existence across the lifespan, studies and observations about food experiences for individuals at the end of life remain noticeably absent. Extant literature continues to focus on nutritional practice during illness and the active dying process, forgoing the rich lived experiences of food in the lives of patients and their families. The current work sought to qualitatively extricate through a constructivist phenomenological approach, the ‘food voices’ of Singaporean palliative care patients and their families. It also simultaneously aimed to assess the role of food in bolstering their subjective feelings of dignity and identity, while also considering resultant clinical implications.SettingHomes of patients within the Singaporean palliative care setting.ParticipantsA subset of qualitative data (n=25) in the form of dyadic interviews with terminally ill patients and a family caregiver was generated from a larger family dignity intervention study that explored the experience of living and dying among Asian palliative care patients and their families.ResultsFramework analysis with both inductive and deductive approaches informed by the a priori domain of food resulted in the generation of four major themes, each with three subthemes. These were organised into the Food for Life and Palliation model. They include: (1) feeding identity and familial bonds, (2) liminal subsistence in illness transition, (3) food becoming lineage, and (4) compassionate nourishment.ConclusionsClinical implications are considered; including food-focused interventions that enhance dignity, promote meaning-making and facilitate legacy construction. Developmental suggestions are also directed at industry partners producing end-of-life nutrition products.

‘It all depends!’: A qualitative study of preferences for place of care and place of death in terminally ill patients and their family caregivers

2019 ◽  
Vol 33 (7) ◽  
pp. 802-811 ◽  
Author(s):  
Katrin Gerber ◽  
Barbara Hayes ◽  
Christina Bryant
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Family Caregivers ◽  
Terminally Ill ◽  
Qualitative Description ◽  
Place Of Death ◽  
Care Hospital ◽  
Structured Interviews ◽  
Terminally Ill Patients ◽  
End Of Life Decision

Background: It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and family caregivers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end-of-life. Aim: To gain an in-depth understanding of how terminally ill patients and their family caregivers make decisions about preferred place of care and place of death. Design: Semi-structured interviews with patients and family caregivers, which were analysed thematically using qualitative description. Setting/participants: A total of 17 participants (8 patients and 9 caregivers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative homecare organisation in Melbourne, Australia. Results: The process of forming location preferences was shaped by uncertainty relating to the illness, the caregiver and the services. Patients and caregivers dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, patients and caregivers expressed their choices as contextual, personal, relational, conditional and flexible preferences. Conclusions: These findings suggest that in many cases end-of-life decision-making does not conclude with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are formed has implications for both clinicians and researchers.

scholarly journals ‘It all depends!’ – Preferences for place of care and place of death in terminally ill patients and their carers

2019 ◽  
Author(s):  
Katrin Gerber ◽  
BARBARA HAYES ◽  
CHRISTINA BRYANT
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Terminally Ill ◽  
Qualitative Description ◽  
Place Of Death ◽  
Care Hospital ◽  
Structured Interviews ◽  
Terminally Ill Patients ◽  
End Of Life Decision ◽  
Life Decision

<div><b>Background</b>: It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and carers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end of life.</div><div><b>Aim</b>: To gain an in-depth understanding of how terminally ill patients and their family caregivers make decisions about preferred place of care and place of death.</div><div>Design: Semi-structured interviews with patients and carers, which were analysed thematically using qualitative description.</div><div><b>Setting/ participants</b>: A total of 17 participants (eight patients and nine carers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative</div><div>homecare organisation in Melbourne, Australia.</div><div><b>Results</b>: The process of forming preferences for place of care and place of death was shaped by uncertainty relating to the illness, the carer and the services. Participants dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, participants expressed their choices as conditional, personal, relational, contextual and flexible preferences.</div><div><b>Conclusions</b>: End-of-life decision-making rarely ends with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are</div><div>formed has implications for both clinicians and researchers.</div>

scholarly journals Sociodemographic and Hospital Level Disparities in Palliative Care Utilization Among Terminally Ill Patients with Multiple Myeloma

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 3594-3594 ◽  
Author(s):  
Kahee A Mohammed ◽  
Nosayaba Osazuwa-Peters ◽  
Kristen M Sanfilippo
Keyword(s):  
Multiple Myeloma ◽  
Palliative Care ◽  
Logistic Regression ◽  
End Of Life ◽  
Terminally Ill ◽  
Multivariate Logistic Regression Analysis ◽  
Care Utilization ◽  
Do Not Resuscitate ◽  
Hospital Level ◽  
Terminally Ill Patients

Abstract Background. The National Comprehensive Cancer Network guidelines recommend that physicians discuss end-of-life planning with patients with incurable cancer and a life expectancy of less than 1 year. Integration of palliative medicine approaches to end-of-life care improves quality of life, patient and caregiver satisfaction, and significantly reduces health care costs. However, there is a paucity of data regarding end-of-life and palliative care use in patients with multiple myeloma. This study aimed to evaluate trends in the incidence of palliative care use and explore patient and hospital level disparities in palliative care use in terminally ill patients with multiple myeloma. Methods. We performed a population-based cross-sectional study using data from the Nationwide Inpatient Sample from 2008 through 2014. International Classification of Diseases-9-Clinical Modification codes were used to identify hospitalized patients (aged ≥ 18 years) with multiple myeloma who died in the hospital. Sociodemographic, comorbidities, and hospital level characteristics were compared using chi square tests and independent sample t tests. Trends in palliative care use were assessed using the Cochrane-Armitage test. Multivariate logistic regression analysis was used to create a predictive model of palliative care use. Results. Of the 7789 patients with multiple myeloma who died in the hospital during the study period, 32.5% received palliative care. Utilization of palliative care increased annually, from 17.3% in 2008 to 43.0% in 2014 (trend P < .001). After adjustment for multiple patient and hospital level covariates in logistic regression, we found a lower likelihood of palliative care use in Black race (odds ratio [OR] = 0.72, 95% Confidence Interval [CI] = 0.62 - 0.82), Hispanic race (OR = 0.48, 95% CI = 0.38 - 0.60), and patients with higher Elixhauser comorbidity index (OR = 0.88, 95% CI = 0.86 - 0.91) whereas higher likelihood of palliative care use were found among uninsured patients (OR = 2.17, 95% CI = 1.73 - 2.72) and patients with Do Not Resuscitate (DNR) status (OR = 3.35, 95% CI = 2.97 - 3.78). Independent hospital level correlates of palliative care use included: admission to teaching vs. non-teaching (OR = 1.29, 95% CI = 1.15 - 1.45), admission to larger vs. small sized hospitals (OR = 1.24, 95% CI = 1.05 - 1.46), and admission to hospitals located in Midwest (OR = 1.33 95% CI = 1.14 - 1.54) and West (OR = 1.63, 95% CI = 1.41 - 1.90) vs South. Conclusion: There is a nationally increasing trend in palliative care utilization over the last decade. This study highlights disparities across race/ethnicity, insurance status, geographic region, and other hospital level factors in palliative care use in terminally ill patients with multiple myeloma. While some of the hospital-level disparities can be explained by the relative lack of palliative services in small non-teaching hospitals, barriers to accessing palliative care services needs to be thoroughly investigated and addressed to ensure equal access to this important aspect of care in terminally ill cancer patients. Disclosures Sanfilippo: Bristol-Myers Squibb: Speakers Bureau.

Sedation for Delirium and Other Symptoms in Terminally Ill Patients in Edmonton

2000 ◽  
Vol 16 (2) ◽  
pp. 5-10 ◽  
Author(s):  
Robin L Fainsinger ◽  
Donna De Moissac ◽  
Isabel Mancini ◽  
Doreen Oneschuk
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Acute Care ◽  
Terminally Ill ◽  
Care Program ◽  
Palliative Care Unit ◽  
Pharmacological Management ◽  
Terminally Ill Patients ◽  
Pain Syndromes ◽  
Care Groups

The use of sedation and the management of delirium and other difficult symptoms in terminally ill patients in Edmonton has been reported previously. The focus of this study was to assess the prevalence in the Edmonton region of difficult symptoms requiring sedation at the end of life. Data were collected for 50 consecutive patients at each of (a) the tertiary palliative care unit, (b) the consulting palliative care program at the Royal Alexandra Hospital (acute care), and (c) three hospice inpatient units in the city. Patients on the tertiary palliative care unit were significantly younger. Assessments confirmed the more problematic physical and psychosocial issues of patients in the tertiary palliative care unit. These patients had more difficult pain syndromes and required significantly higher doses of daily opioids. Approximately 80% of patients in all three settings developed delirium prior to death. Pharmacological management of this problem was needed by 40% in the acute care setting, and by 80% in the tertiary palliative care unit. The patients sedated varied from 4% in the hospice setting to 10% in the tertiary palliative care unit. Of the 150 patients, nine were sedated for delirium, one for dyspnea. The prevalence of delirium and other symptoms requiring sedation in our area is relatively low compared to others reported in the literature. Demographic variability between the three Edmonton settings highlights the need for caution in comparing results of different palliative care groups. It is possible that some variability in the use of sedation internationally is due to cultural differences. The infrequent deliberate use of sedation in Edmonton suggests that improved management has resulted in fewer distressing symptoms at the end of life. This is of benefit to patients and to family members who are with them during this time.

scholarly journals ‘It all depends!’ – Preferences for place of care and place of death in terminally ill patients and their carers

2019 ◽  
Author(s):  
Katrin Gerber ◽  
BARBARA HAYES ◽  
CHRISTINA BRYANT
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Terminally Ill ◽  
Qualitative Description ◽  
Place Of Death ◽  
Care Hospital ◽  
Structured Interviews ◽  
Terminally Ill Patients ◽  
End Of Life Decision ◽  
Life Decision

<div><b>Background</b>: It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and carers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end of life.</div><div><b>Aim</b>: To gain an in-depth understanding of how terminally ill patients and their family caregivers make decisions about preferred place of care and place of death.</div><div>Design: Semi-structured interviews with patients and carers, which were analysed thematically using qualitative description.</div><div><b>Setting/ participants</b>: A total of 17 participants (eight patients and nine carers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative</div><div>homecare organisation in Melbourne, Australia.</div><div><b>Results</b>: The process of forming preferences for place of care and place of death was shaped by uncertainty relating to the illness, the carer and the services. Participants dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, participants expressed their choices as conditional, personal, relational, contextual and flexible preferences.</div><div><b>Conclusions</b>: End-of-life decision-making rarely ends with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are</div><div>formed has implications for both clinicians and researchers.</div>

Happiness at the end of life: A qualitative study

2021 ◽  
pp. 1-7
Author(s):  
Tan Seng Beng ◽  
Wong Ka Ghee ◽  
Ng Yun Hui ◽  
Ooi Chieh Yin ◽  
Khoo Wei Shen Kelvin ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
Terminal Illness ◽  
Terminally Ill ◽  
Social Connections ◽  
Targeted Interventions ◽  
Pain And Suffering ◽  
The University ◽  
Eudaimonic Happiness

Abstract Objective Dying is mostly seen as a dreadful event, never a happy experience. Yet, as palliative care physicians, we have seen so many patients who remained happy despite facing death. Hence, we conducted this qualitative study to explore happiness in palliative care patients at the University of Malaya Medical Centre. Method Twenty terminally ill patients were interviewed with semi-structured questions. The results were thematically analyzed. Results Eight themes were generated: the meaning of happiness, connections, mindset, pleasure, health, faith, wealth, and work. Our results showed that happiness is possible at the end of life. Happiness can coexist with pain and suffering. Social connections were the most important element of happiness at the end of life. Wealth and work were given the least emphasis. From the descriptions of our patients, we recognized a tendency for the degree of importance to shift from the hedonic happiness to eudaimonic happiness as patients experienced a terminal illness. Significance of results To increase the happiness of palliative care patients, it is crucial to assess the meaning of happiness for each patient and the degree of importance for each happiness domain to allow targeted interventions.

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.

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