scholarly journals Qualitative Analysis of Palliative Care for Pediatric Patients With Cancer at Bugando Medical Center: An Evaluation of Barriers to Providing End-of-Life Care in a Resource-Limited Setting

2018 ◽  
pp. 1-10 ◽  
Author(s):  
B. Emily Esmaili ◽  
Kearsley A. Stewart ◽  
Nestory A. Masalu ◽  
Kristin M. Schroeder

Purpose Palliative care remains an urgent, neglected need in the developing world. Global disparities in end-of-life care for children, such as those with advanced cancers, result from barriers that are complex and largely unstudied. This study describes these barriers at Bugando Medical Center, one of three consultant hospitals in Tanzania, to identify areas for palliative care development suitable to this context. Methods In-depth interviews were conducted with 20 caregivers of pediatric patients with cancer and 14 hospital staff involved in pediatric end-of-life care. This was combined with 1 month of participant observation through direct clinical care of terminally ill pediatric patients. Results Data from interviews as well as participant observation revealed several barriers to palliative care: financial, infrastructure, knowledge and cultural (including perceptions of pediatric pain), and communication challenges. Although this study focused on barriers, what also emerged were the unique advantages of end-of-life care in this setting, including community cohesiveness and strong faith background. Conclusion This study provides a unique but focused description of barriers to palliative care common in a low-resource setting, extending beyond resource needs. This multidisciplinary qualitative approach combined interviews with participant observation, providing a deeper understanding of the logistical and cultural challenges in this setting. This new understanding will inform the design of more effective—and more appropriate—palliative care policies for young patients with cancer in the developing world.

2021 ◽  
pp. bmjspcare-2021-003386
Author(s):  
Michael Bonares ◽  
Kenneth Mah ◽  
David Christiansen ◽  
John Granton ◽  
Andrea Weiss ◽  
...  

ObjectivesPatients with chronic respiratory disease have significant palliative care needs, but low utilisation of specialist palliative care (SPC) services. Decreased access to SPC results in unmet palliative care needs among this patient population. We sought to determine the referral practices to SPC among respirologists in Canada.MethodsRespirologists across Canada were invited to participate in a survey about their referral practices to SPC. Associations between referral practices and demographic, professional and attitudinal factors were analysed using regression analyses.ResultsThe response rate was 64.7% (438/677). Fifty-nine per cent of respondents believed that their patients have negative perceptions of palliative care and 39% were more likely to refer to SPC earlier if it was renamed supportive care. While only 2.7% never referred to SPC, referral was late in 52.6% of referring physicians. Lower frequency of referral was associated with equating palliative care to end-of-life care (p<0.001), male sex of respirologist (p=0.019), not knowing referral criteria of SPC services (p=0.015) and agreement that SPC services prioritise patients with cancer (p=0.025); higher referral frequency was associated with satisfaction with SPC services (p=0.001). Late referral was associated with equating palliative care to end-of-life care (p<0.001) and agreement that SPC services prioritise patients with cancer (p=0.013).ConclusionsPossible barriers to respirologists’ timely SPC referral include misperceptions about palliative care, lack of awareness of referral criteria and the belief that SPC services prioritise patients with cancer. Future studies should confirm these barriers and evaluate the effectiveness of strategies to overcome them.


2019 ◽  
pp. bmjspcare-2019-001782 ◽  
Author(s):  
Lou-Ching Kuo ◽  
Jung Jae Lee ◽  
Denise Shuk Ting Cheung ◽  
Ping-Jen Chen ◽  
Chia-Chin Lin

ObjectivesThe National Health Insurance programme started providing coverage for inpatient care in palliative care (PC) units of acute care hospitals in 2000; however, initially, only PC provided to patients with terminal cancer was covered. A PC policy that enabled PC reimbursement for patients with dementia was implemented in 2009. However, the association of this PC policy with end-of-life care remains unclear. The study aims to compare the association of the PC policy with end-of-life care between patients with dementia and patients with cancer during the last 6 months of their lives.MethodsWe analysed the claims data of 7396 patients dying with dementia (PDD) and 24 319 patients dying with cancer (PDC) during 1997–2013.ResultsAmong PDC, while the percentage of receiving PC increased from 3.6% in 1999 to 14.2% by the end of 2000 (adjusted OR (aOR)=4.07, 95% CI 2.70 to 6.13) and from 20.9% in 2010 to 41.0% in 2013 (aOR=1.40, 95% CI 1.33 to 1.47), vasopressor use decreased from 71.6% in 1999 to 35.5% in 2001 (aOR=0.90, 95% CI 0.82 to 0.98). Among PDD, PC use increased from 0.2% in 2009 to 4.9% in 2013 (aOR=2.05, 95% CI 1.60 to 2.63) and cardiopulmonary resuscitation use decreased from 17.6% in 2009 to 10.0% in 2013 (aOR=0.83, 95% CI 0.76 to 0.90).ConclusionsImplementation of the PC policy in Taiwan was associated with improved PC utilisation among patients with cancer and dementia, which may reduce unnecessary medical care procedures.


2016 ◽  
Vol 34 (15_suppl) ◽  
pp. e21681-e21681
Author(s):  
Collin Thomas Zimmerman ◽  
Shivani S. Shinde ◽  
Pashtoon Murtaza Kasi ◽  
Mark Robert Litzow ◽  
Jeanne M. Huddleston

2020 ◽  
pp. bmjspcare-2020-002302
Author(s):  
Manon S Boddaert ◽  
Chantal Pereira ◽  
Jeroen Adema ◽  
Kris C P Vissers ◽  
Yvette M van der Linden ◽  
...  

ObjectivesTo evaluate the impact of provision and timing of palliative care (PC) on potentially inappropriate end-of-life care to patients with cancer in a mixed generalist—specialist PC model.MethodA retrospective population-based observational study using a national administrative health insurance database. All 43 067 adults in the Netherlands, who were diagnosed with or treated for cancer during the year preceding their death in 2017, were included. Main exposure was either generalist or specialist PC initiated >30 days before death (n=16 967). Outcomes were measured over the last 30 days of life, using quality indicators for potentially inappropriate end-of-life care.ResultsIn total, 14 504 patients (34%) experienced potentially inappropriate end-of-life care; 2732 were provided with PC >30 days before death (exposure group) and 11 772 received no PC or ≤30 days before death (non-exposure group) (16% vs 45%, p<0.001). Most patients received generalist PC (88%). Patients provided with PC >30 days before death were 5 times less likely to experience potentially inappropriate end-of-life care (adjusted OR (AOR) 0.20; (95% CI 0.15 to 0.26)) than those with no PC or PC in the last 30 days. Both early (>90 days) and late (>30 and≤90 days) PC initiation had lower odds for potentially inappropriate end-of-life care (AOR 0.23 and 0.19, respectively).ConclusionTimely access to PC in a mixed generalist—specialist PC model significantly decreases the likelihood of potentially inappropriate end-of-life care for patients with cancer. Generalist PC can play a substantial role.


2021 ◽  
Vol 13 ◽  
pp. 175883592110422
Author(s):  
Gehan Soosaipillai ◽  
Anjui Wu ◽  
Gino M Dettorre ◽  
Nikolaos Diamantis ◽  
John Chester ◽  
...  

Background: Specialist palliative care team (SPCT) involvement has been shown to improve symptom control and end-of-life care for patients with cancer, but little is known as to how these have been impacted by the COVID-19 pandemic. Here, we report SPCT involvement during the first wave of the pandemic and compare outcomes for patients with cancer who received and did not receive SPCT input from multiple European cancer centres. Methods: From the OnCovid repository ( N = 1318), we analysed cancer patients aged ⩾18 diagnosed with COVID-19 between 26 February and 22 June 2020 who had complete specialist palliative care team data (SPCT+ referred; SPCT− not referred). Results: Of 555 eligible patients, 317 were male (57.1%), with a median age of 70 years (IQR 20). At COVID-19 diagnosis, 44.7% were on anti-cancer therapy and 53.3% had ⩾1 co-morbidity. Two hundred and six patients received SPCT input for symptom control (80.1%), psychological support (54.4%) and/or advance care planning (51%). SPCT+ patients had more ‘Do not attempt cardio-pulmonary resuscitation’ orders completed prior to (12.6% versus 3.7%) and during admission (50% versus 22.1%, p < 0.001), with more SPCT+ patients deemed suitable for treatment escalation (50% versus 22.1%, p < 0.001). SPCT involvement was associated with higher discharge rates from hospital for end-of-life care (9.7% versus 0%, p < 0.001). End-of-life anticipatory prescribing was higher in SPCT+ patients, with opioids (96.3% versus 47.1%) and benzodiazepines (82.9% versus 41.2%) being used frequently for symptom control. Conclusion: SPCT referral facilitated symptom control, emergency care and discharge planning, as well as high rates of referral for psychological support than previously reported. Our study highlighted the critical need of SPCTs for patients with cancer during the pandemic and should inform service planning for this population.


2017 ◽  
Vol 35 (1) ◽  
pp. 100-103 ◽  
Author(s):  
Say Salomon ◽  
Elizabeth Chuang ◽  
Deepa Bhupali ◽  
Daniel Labovitz

Background: Site of death is an important quality indicator for patients with terminal illness. Racial and ethnic disparities exist in the quality of end-of-life care. This study explores the site of death of patients admitted for and dying of complications of acute neurovascular events in a hospital network in an urban, low-income, predominantly minority community. Methods: This is a retrospective cohort study of patients admitted to 1 of 3 general hospitals that are part of an academic medical center in Bronx, New York, with the diagnosis of acute ischemic stroke, intracerebral hemorrhage, or subarachnoid hemorrhage who died during the index admission or were discharged with hospice services. The main outcome was location of death (palliative care inpatient unit [IPU] at the medical center or hospice services at discharge vs death on any other IPU). Results: A total of 655 patients admitted with acute neurovascular events from January 1, 2009, to March 1, 2015, died or were discharged with hospice services and were included in the analysis. Of those patients, 238 (36.3%) were black, 233 (35.5%) were Hispanic, and 184 (28.1%) were white. A total of 178 (24.4%) died on the palliative care unit or were discharged with hospice services, including 55 black patients (23.1%), 52 (28.3%) white patients, and 53 (22.7%) Hispanic patients. These differences were not statistically significant, even when controlling for confounders. Conclusion: This study did not show a difference in site of death in our institution by race or ethnicity, which is considered an important quality end-of-life care metric.


BMJ Open ◽  
2021 ◽  
Vol 11 (9) ◽  
pp. e051735
Author(s):  
Qinqin Cheng ◽  
Yinglong Duan ◽  
Hongling Zheng ◽  
Xianghua Xu ◽  
Khalid Khan ◽  
...  

ObjectivesThis study aimed to investigate the knowledge and attitudes of patients with cancer of palliative care and their preferences regarding end-of-life care in mainland China.DesignA cross-sectional study.SettingThis study was conducted in a tertiary cancer hospital.ParticipantsTwo hundred forty-seven patients with cancer were recruited and consented to fill out the questionnaires.Outcome measuresThe participants’ knowledge and attitudes of palliative care and their preferences of end-of-life care involving place of care, place of death, truth disclosure and treatments during end-of-life were measured.ResultsIn total, 239 questionnaires were valid. The vast majority of patients with cancer (81.2%) had never heard about palliative care or related policies, and only a few of them (5.8%) had somewhat or totally understanding of palliative care. Most participants (75.3%) had supportive attitudes towards palliative care. In terms of preferences for end-of-life care, most patients with cancer preferred to be cared for at home at the end of their life and to die at home. The majority of patients with cancer (65.7%) wanted to know their diagnosis or prognosis of the disease, regardless of the type of disease. More than half of the participants (54%) wished to improve their quality of life rather than prolong their life expectancy. More than a third of the patients with cancer preferred to entrust a family member or agent to sign medical decision agreements for them.ConclusionsIt is essential for healthcare providers to improve the understanding of patients with cancer of palliative care and be aware of the end-of-life care preferences of patients with cancer, in order to provide support that enables patients with cancer to receive end-of-life care that is accordant with their wishes.


2012 ◽  
Vol 5 (6) ◽  
pp. 351-359 ◽  
Author(s):  
Hayley Cousins ◽  
Richard Cassell ◽  
P.-J. Morey

End-of-life care is that which is provided to patients experiencing a progressive final decline in their lives, usually with a prognosis of less than a year. End-of-life care in non-cancer illness may be challenging for GPs because of the uncertainty about disease trajectory. Patients with non-cancer illness often experience similar symptoms to patients with cancer but for longer hence with a greater impact on quality of life. Only a minority of such patients need specialist palliative care input so the generalist needs to be confident in assessing, treating and supporting patients and families. This article offers suggestions to overcome the challenges along with practical guidance on managing symptoms in the most common non-cancer illnesses.


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