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

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.

Author(s):  
Inimfon Jackson ◽  
Nsikak Jackson ◽  
Aniekeme Etuk

Background: Several factors are reported to be associated with palliative care utilization among patients with various cancers, but literature is lacking on multiple myeloma (MM) specific factors. MM patients have a high symptom burden and early involvement of palliative could increase their quality of life. We examined factors associated with palliative care utilization among MM patients and explored prevalence trends in palliative care utilization among patients with MM. Methods: Cross-sectional analyses were conducted using the National Inpatient Sample data collected between 2016 and 2018. Descriptive analyses were used to explore prevalence trends in palliative care utilization over time. Multivariable logistic regression models were used to examine sociodemographic and hospital-level factors associated with palliative care utilization in MM patients. Results: Overall prevalence of palliative care utilization in our population was 7.7% with a trend of increasing use of palliative care from 7.3% in 2016 to 8.2% in 2018. MM patients aged 70 years and above had 1.30 times higher odds (95% CI: 1.20-1.42) of receiving palliative care relative to those younger than 70 years. Compared to non-Hispanic whites, non-Hispanic blacks (Adjusted odds ratio (AOR): 0.86; 95% CI: 0.79-0.94) were less likely to utilize palliative care. Patients on Medicaid (AOR: 1.27; 95% CI: 1.08-1.49), private insurance (AOR: 1.27; 95% CI: 1.16-1.39) and other insurance types (AOR: 2.10; 95% CI: 1.79-2.47) had significantly higher odds of receiving palliative care when compared to those on Medicare. Other factors identified were hospital region, location, patient disposition, admission type, length of stay, and number of comorbidities. Conclusion: Our findings highlight the urgent need for education of hospital physicians on the need for early palliative care involvement in the care of hospitalized MM patients. Messaging interventions such as the delivery of pop-up messages in electronic medical records to serve as reminders for physicians can be explored as a potential way to increase palliative care consultations for patients who need them.


2019 ◽  
Author(s):  
Katrin Gerber ◽  
BARBARA HAYES ◽  
CHRISTINA BRYANT

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.


2021 ◽  
pp. 082585972110139
Author(s):  
Outi J. Hakola

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.


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

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.


2019 ◽  
Author(s):  
Katrin Gerber ◽  
BARBARA HAYES ◽  
CHRISTINA BRYANT

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.


Author(s):  
Hui-Mei Lin ◽  
Chih-Kuang Liu ◽  
Yen-Chun Huang ◽  
Chieh-Wen Ho ◽  
Mingchih Chen

Background: The decision to sign a do-not-resuscitate (DNR) consent is critical for patients concerned about their end-of-life medical care. Taiwan’s National Health Insurance Administration (NHIA) introduced a family palliative care consultation fee to encourage family palliative care consultations; since its implementation, identifying which families require such consultations has become more important. In this study, the Taiwanese version of the Palliative Care Screening Tool (TW–PCST) was used to determine each patient’s degree of need for a family palliative care consultation. Objective: This study analyzed factors associated with signing DNR consents. The results may inform family palliative care consultations for families in need, thereby achieving a higher DNR consent rate and promoting the effective use of medical resources, including time, labor, and funding. Method: In this retrospective study, logistic regression analysis was conducted to determine which factors affected the DNR decisions of 2144 deceased patients (aged ≥ 20 years), whose records were collected from the Taipei City Hospital health information system from 1 January to 31 December 2018. Results: Among the 1730 patients with a DNR consent, 1298 (75.03%) received family palliative care consultations. The correlation between DNR consent and family palliative care consultations was statistically significant (p < 0.001). Through logistic regression analysis, we determined that participation in family palliative care consultation, TW–PCST score, type of ward, and length of stay were significant variables associated with DNR consent. Conclusions: This study determined that TW–PCST scores can be used as a measurement standard for the early identification of patients requiring family palliative care consultations. Family palliative care consultations provide opportunities for patients’ family members to participate in discussions about end-of-life care and DNR consent and provide patients and their families with accurate medical information regarding the end-of-life care decision-making process. The present results can serve as a reference to increase the proportion of patients willing to sign DNR consents and reduce the provision of ineffective life-prolonging medical treatment.


2000 ◽  
Vol 16 (2) ◽  
pp. 5-10 ◽  
Author(s):  
Robin L Fainsinger ◽  
Donna De Moissac ◽  
Isabel Mancini ◽  
Doreen Oneschuk

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.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 752-752
Author(s):  
Joan Carpenter ◽  
Winifred Scott ◽  
Mary Ersek ◽  
Cari Levy ◽  
Jennifer Cohen ◽  
...  

Abstract This study examined the alignment between Veterans’ end-of-life care and a Life-Sustaining Treatment (LST) goal “to be comfortable.” It includes Veterans with VA inpatient or community living center stays overlapping July 2018--January 2019, with a LST template documented by January 31, 2019, and who died by April 30, 2019 (N = 18,163). Using VA and Medicare data, we found 80% of decedents with a comfort care goal received hospice and 57% a palliative care consult (compared to 57% and 46%, respectively, of decedents without a comfort care goal). Using multivariate logistic regression, a comfort care goal was associated with significantly lower odds of EOL hospital or ICU use. In the last 30 days of life, Veterans with a comfort care goal had 43% lower odds (AOR 0.57; 95% CI: 0.51, 0.64) of hospitalization and 46% lower odds of ICU use (AOR 0.54; 95% CI: 0.48, 0.61).


2021 ◽  
pp. 1-7
Author(s):  
Tan Seng Beng ◽  
Wong Ka Ghee ◽  
Ng Yun Hui ◽  
Ooi Chieh Yin ◽  
Khoo Wei Shen Kelvin ◽  
...  

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.


Author(s):  
Nanako Koyama ◽  
Chikako Matsumura ◽  
Yuuna Tahara ◽  
Morito Sako ◽  
Hideo Kurosawa ◽  
...  

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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