Comparability of the Cancer Supportive Care Clinical Studies Collaborative (CSCCSC) study population to national referrals to other specialist palliative care services.

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 63-63
Author(s):  
David Christopher Currow ◽  
Hiromichi Matsuoka ◽  
Samuel Allingham ◽  
Belinda Fazekas ◽  
Linda Brown ◽  
...  
Keyword(s):  
Palliative Care ◽  
Supportive Care ◽  
Clinical Studies ◽  
Symptom Control ◽  
Population Characteristics ◽  
Phase Iii ◽  
Trial Participation ◽  
Care Services ◽  
Significant Difference ◽  
Palliative Care Services

63 Background: There are no agreed national nor international criteria for referral to palliative care. Key population characteristics have been defined to aid the generalizability of research findings in palliative care clinical studies. To codify differences in key demographic factors between patients with cancer participating in the Australian national Cancer Supportive Care Clinical Studies Collaborative (CSCCSC) phase III symptom control studies and the population referred to other Australian palliative care services. Methods: This study compares two contemporaneous consecutive cohorts generated through clinical trial participation and the national palliative care clinical quality improvement registry in Australia. Age, sex, cancer diagnosis, language, and socio-economic status were compared. Results: Cohorts were people with cancer: enrolled in CSCCSC phase III clinical studies (n=902; 17 sites); and registered by the Australian national Palliative Care Outcomes Collaboration (PCOC; n=75,240; 117 sites). Participants in CSCCSC studies were younger than those of PCOC (median 71 (IQR 62, 79) versus median 73 (IQR 63, 81); p=0.003 respectively). There was no significant difference in sex (p=0.483). Patients who spoke English accounted 95.0% of enrollees in the CSCCSC group and 92.2% in the PCOC group (p = 0.004). Clinical study participants had higher socioeconomic status that the PCOC group (p=0.022). Conclusions: Overall, the slightly different demographic patterns are reflective of the differences often seen between phase III trials and the populations to whom the results will be applied. Age differences particularly need to be taken into account when considering the best way to apply each study’s findings.

Rural Palliative Care

2019 ◽  
pp. 670-681
Author(s):  
Richard A. Taylor ◽  
J. Nicholas Dionne-Odom ◽  
Erin R. Currie ◽  
Macy Stockdill ◽  
Marie A. Bakitas
Keyword(s):  
Palliative Care ◽  
Nurse Practitioners ◽  
Rural Areas ◽  
Health Workers ◽  
Symptom Control ◽  
Care Needs ◽  
Web Based ◽  
Care Services ◽  
Palliative Care Services ◽  
Care Training

Access to palliative care remains challenging to those living in rural areas across the globe. This disparity of care leaves many without critically important palliative care services across their illness trajectory, especially in its final stages. Creative strategies to meet the palliative care needs of rural patients such as telehealth, videoconferencing specialists’ consultation, and web-based resources exist. Using these strategies where available can address some palliative care disparities and access to care in rural areas that were previously absent. Developing clinical capacity of rural clinicians through enhanced education in primary palliative care in training programs, expanding services with the use of nurse practitioners, and using palliative care–trained community lay health workers are also strategies to improve access. Additionally, by developing rural hospital providers’ knowledge and skills to provide primary palliative care in tasks such as establishing care goals, communication, and basic symptom control may prevent many transfers to academic centers miles away. Through ongoing education and primary palliative care training and innovations in bringing specialty care to rural areas, “palliative care everywhere” will soon be a reality.

Using a supportive care framework to understand and improve palliative care among cancer patients in Africa

2015 ◽  
Vol 14 (3) ◽  
pp. 284-301 ◽  
Author(s):  
David S. Busolo ◽  
Roberta L. Woodgate
Keyword(s):  
Palliative Care ◽  
Supportive Care ◽  
Cancer Patients ◽  
Care Needs ◽  
African Countries ◽  
Research Education ◽  
Patients With Cancer ◽  
Care Services ◽  
Incidence And Mortality ◽  
Palliative Care Services

ABSTRACTObjective:Cancer incidence and mortality are increasing in Africa, which is leading to greater demands for palliative care. There has been little progress in terms of research, pain management, and policies related to palliative care. Palliative care in Africa is scarce and scattered, with most African nations lacking the basic services. To address these needs, a guiding framework that identifies care needs and directs palliative care services could be utilized. Therefore, using the supportive care framework developed by Fitch (Fitch, 2009), we here review the literature on palliative care for patients diagnosed with cancer in Africa and make recommendations for improvement.Method:The PubMed, Scopus, CINAHL, Web of Science, Embase, PsycINFO, Social Sciences Citation Index, and Medline databases were searched. Some 25 English articles on research from African countries published between 2004 and 2014 were selected and reviewed. The reviewed literature was analyzed and presented using the domains of the supportive care framework.Results:Palliative care patients with cancer in Africa, their families, and caregivers experience increasing psychological, physical, social, spiritual, emotional, informational, and practical needs. Care needs are often inadequately addressed because of a lack of awareness as well as deficient and scattered palliative care services and resources. In addition, there is sparse research, education, and policies that address the dire situation in palliative care.Significance of Results:Our review findings add to the existing body of knowledge demonstrating that palliative care patients with cancer in Africa experience disturbing care needs in all domains of the supportive care framework. To better assess and address these needs, holistic palliative care that is multidomain and multi-professional could be utilized. This approach needs to be individualized and to offer better access to services and information. In addition, research, education, and policies around palliative care for cancer patients in Africa could be more comprehensive if they were based on the domains of the supportive care framework.

scholarly journals Does the Type and Dose of Palliative Care Services Impact Symptom Control in Patients with Advanced Heart Failure?

2013 ◽  
Vol 19 (8) ◽  
pp. S72-S73
Author(s):  
Lorraine S. Evangelista ◽  
Jennifer Ballard-Hernandez ◽  
Dawn Lombardo ◽  
Shaista Malik ◽  
Marjan Motie ◽  
...  
Keyword(s):  
Heart Failure ◽  
Palliative Care ◽  
Symptom Control ◽  
Advanced Heart Failure ◽  
Care Services ◽  
Palliative Care Services

scholarly journals Strategies for introducing outpatient specialty palliative care in gynecologic oncology.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 111-111
Author(s):  
Casey M. Hay ◽  
Carolyn Lefkowits ◽  
Marie Bakitas ◽  
Megan Crowley-Makota ◽  
Renata Urban ◽  
...  
Keyword(s):  
Palliative Care ◽  
Symptom Control ◽  
Gynecologic Oncology ◽  
Relationship Building ◽  
Future Research ◽  
Patient Anxiety ◽  
Telephone Interviews ◽  
Care Services ◽  
Qualitative Interview Study ◽  
Palliative Care Services

111 Background: Concern that patients will react negatively to the idea of palliative care is cited as a barrier to timely referral. Strategies to successfully introduce specialty palliative care to patients have not been well-described. We sought to understand how gynecologic oncologists introduce outpatient specialty palliative care. Methods: We conducted a national qualitative interview study at six geographically diverse academic cancer centers with well-established palliative care clinics between September 2015 and March 2016. Thirty-four gynecologic oncologists participated in semi-structured telephone interviews focusing on attitudes, experiences, and practices related to outpatient palliative care. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine a coding framework. This analysis focuses on practices for introducing palliative care. Results: Mean participant age was 47 years (± 10). Mean interview length was 25 minutes (± 7). Gynecologic oncologists described three main strategies for introducing outpatient specialty palliative care: first establish a strong primary relationship and trust with patients in order to alleviate fear and increase acceptance of referral; focus initial palliative care referral on symptom control to gain a “foot in the door”, facilitate early relationship-building with palliative care clinicians, and dissociate palliative care from end-of-life; and normalize and explain palliative care referral to decrease patient anxiety and confusion. These strategies aimed to decrease negative patient associations and encourage acceptance of early referral to palliative care specialists. Conclusions: Gynecologic oncologists have developed strategies for introducing palliative care services to alleviate patient concerns. Future research should examine patient perception of these strategies and assess impact on rates of acceptance of outpatient specialty palliative care referral.

scholarly journals Refractory suffering at the end of life and the assisted dying debate: An interview study with palliative care nurses and doctors

2020 ◽  
pp. 147775092094661
Author(s):  
Kristine Espegren Gustad ◽  
Åsta Askjer ◽  
Per Nortvedt ◽  
Olav Magnus S Fredheim ◽  
Morten Magelssen
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Symptom Control ◽  
Prima Facie ◽  
Assisted Dying ◽  
Analysis Framework ◽  
Structured Interviews ◽  
Care Services ◽  
Palliative Care Services ◽  
Shed Light

Background How often does refractory suffering, which is suffering due to symptoms that cannot be adequately controlled, occur at the end of life in modern palliative care? What are the causes of such refractory suffering? Should euthanasia be offered for refractory suffering at the end of life? We sought to shed light on these questions through interviews with palliative care specialists. Methods Semi-structured interviews with six nurses and six doctors working in palliative care in five Norwegian hospitals. Transcripts were analysed with systematic text condensation, a qualitative analysis framework. Results Informants find that refractory suffering is rare, and that with palliative sedation satisfactory symptom control can nearly always be achieved at the end of life. However, the process of reaching adequate symptom control can be protracted, and there can be significant suffering in the meantime. Both somatic, psychological, social and existential factors can contribute to refractory suffering and potentiate each other. However, informants also place significant weight on factors pertaining to the organization of palliative care services as contributing to insufficient symptom control. Conclusions If refractory suffering is indeed rare, then this arguably weakens a common prima facie argument for the legalization of assisted dying. However, the process of reaching adequate symptom control can be protracted and involve significant suffering. The experiences of palliative care clinicians constitute important empirical premises for the assisted dying debate. The study points to several areas in which palliative care can be improved.

Does place of death vary by deprivation for patients known to specialist palliative care services?

2016 ◽  
Vol 8 (4) ◽  
pp. 428-430 ◽  
Author(s):  
Michael Macfarlane ◽  
Emma Carduff
Keyword(s):  
Palliative Care ◽  
Social Deprivation ◽  
Place Of Death ◽  
Contributory Factor ◽  
Specialist Palliative Care ◽  
Death Rates ◽  
Care Services ◽  
Significant Difference ◽  
Palliative Care Services ◽  
Hospital Deaths

ObjectivesReferral to, and usage of, specialist palliative care (SPC) services are not equitable and social deprivation may be a contributory factor in this. Deprivation may also affect the place of death of patients with cancer. No study, however, has investigated whether inequalities persist following referral to SPC services. This study investigates whether place of death varies by deprivation for patients known to SPC services.MethodsPlace of death and postcode were obtained for 485 consecutive patients known to SPC services within NHS Lothian who died in 2014–2015. From this information, deprivation quintile (DQ) was derived using the Scottish Index of Multiple Deprivation (SIMD) database and place of death compared between DQs and analysed statistically.ResultsAcross all DQs, patients known to SPC services were more likely to die in the hospice than at home or in hospital. There was, however, a small but statistically significant difference in the ratio of hospital deaths compared to hospice deaths between the DQs, with higher death rates in hospital for the most deprived compared to the least deprived and higher death rates in the hospice for the least deprived compared to the most deprived.ConclusionsThis study suggests that even after referral to specialist palliative care services variation in place of death by deprivation persists. Greater deprivation is associated with increased likelihood of dying in hospital and decreased likelihood of dying in a hospice, although no difference was noted for home deaths.

Palliative Care Services in the NeuroICU: Opportunities and Persisting Barriers

2021 ◽  
pp. 104990912098721
Author(s):  
Michael Morris ◽  
Emily L. Mroz ◽  
Cristina Popescu ◽  
Jacqueline Baron-Lee ◽  
Katharina M. Busl
Keyword(s):  
Palliative Care ◽  
Supportive Care ◽  
Medical Center ◽  
Academic Medical Center ◽  
Retrospective Chart Review ◽  
Future Research ◽  
Supportive Services ◽  
Missed Opportunities ◽  
Care Services ◽  
Palliative Care Services

Background: End-of-life (EOL) supportive care, including palliative and hospice services, is an area of increasing importance in critical care. Neurointensivists face unique challenges in providing timely supportive care to terminally ill patients expected to expire in the NeuroICU. Objective: This study explored the extent of effective utilization of, and recorded barriers to, palliative and hospice services in a dedicated 30-bed NeuroICU at a large academic medical center. Design: A retrospective chart review of patients who expired in the NeuroICU was conducted. The timeline from patient admission to arrival of palliative care services was traced. Qualitative review of chart notes was used to identify barriers to provision of palliative services. Setting: A total of 330 patients expired in the NeuroICU during the study period, including 176 from the neurology and 154 from the neurosurgical service. Results: Across services, 146 expired patients were never referred to palliative care or hospice services. Of those referred, over one-third were referred more than 4 days past admission to the NeuroICU. On average, patients were referred with less than 1 day before expiration. Common barriers to referral for supportive services were documented (e.g., patient expected to expire, family declined service). Conclusions: Despite benefits of palliative care and an in-hospital hospice opportunity, we identified lack of referral, and particularly delays in referral to services as significant barriers. Our study highlights these as missed opportunities for patients and families to receive maximum benefits from these services. Future research should solidify triggers for EOL services in this setting.

A home-based palliative care pilot program for patients with advanced cancer.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 164-164
Author(s):  
Rae Seitz ◽  
Charles F. Miller ◽  
Michael Duick ◽  
Robert Eubanks
Keyword(s):  
Palliative Care ◽  
Supportive Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Symptom Management ◽  
Pilot Program ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services ◽  
Acute Care Services

164 Background: Advanced cancer care often lacks a comprehensive approach; in Hawaii most oncology practices do not have access to palliative care teams. This causes high use of acute care services and suboptimal symptom management. Hawaii Medical Service Association (HMSA) created a pilot program called Supportive Care in which home-based palliative care services are offered to members with advanced cancer with goals of improved clinical outcomes and decrease utilization of acute care services Methods: Patients must have stage III or IV malignancy and ECOG PS of 2 or greater. Palliative care services are provided by Medicare-certified hospice agencies, with interdisciplinary teams, 24/7 on-call capacity, and expertise in symptom management. Hospice agencies are paid by HMSA to provide intermittent home visits. DME and pharmaceuticals. Care is coordinated with the patient's treating oncologist and other care providers. Each patient may receive 90 days of Supportive Care services in a 12 month period. Services are suspended during hospitalization or placement in a skilled nursing facility. Results: Patients enrolled in this program utilized hospital services significantly less than other Medicare Beneficiaries during the end-of-life period, suggesting that complex medical and psychosocial needs can be met in the home environment. The table compares findings from cancer patients enrolled in Supportive Care during 2014 with the most recent data available from The Dartmouth Atlas of Health Care. Conclusions: Multiple studies show improved quality of life for cancer patients receiving palliative care. Supportive Care resulted in improved clinical outcomes. Anecdotal feedback indicates high satisfaction among patients, families, and providers. Research to collect data and quantify satisfaction continues. [Table: see text]

Access to palliative care services for limited English proficient patients with advanced NSCLC.

2020 ◽  
Vol 38 (29_suppl) ◽  
pp. 99-99
Author(s):  
Bonnie Leung ◽  
Selina Wong ◽  
Kiran Malli ◽  
Cheryl Ho
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Median Time ◽  
Advanced Nsclc ◽  
Care Providers ◽  
Do Not Resuscitate ◽  
Care Services ◽  
Significant Difference ◽  
Palliative Care Services ◽  
Nsclc Patients

99 Background: More than a quarter of people living in British Columbia, Canada speak languages other than English in their homes. Immigrants often encounter communication challenges with their health care providers (HCPs), have poor health literacy, and have a limited understanding on navigating the health care system. NSCLC patients with limited English proficiency (LEP) may receive less palliative care services despite high symptom burden and significant needs due to these factors. The study goals were to observe the difference in access to community palliative home care (CPHC) and rate of completing a Do Not Resuscitate (DNR) form between NSCLC patients who are English proficient (EP) and LEP. Methods: All patients with advanced NSCLC referred to BC Cancer–Vancouver Centre in 2016 and received medical care were included (N=176). Patients seen with a medical interpreter were considered to be LEP. Demographics and clinical information were collected retrospectively. UVA using X2 test and Fisher’s exact test were used to compare EP and LEP patients. Mann-Whitney test was used to compare the median time from CPHC referral and signed DNR to death between EP and LEP patients. Results: Language of communication: English 65%, Cantonese 22%, Mandarin 6%, Korean 1%, Tagalog 1%, and other 5%. Baseline characteristics: median age 69 EP vs 76 LEP, female 44% EP vs 65% LEP, non-squamous 68% EP vs 72% LEP and squamous 14% EP vs 6% LEP. There was no difference in the rate of CPHC referral (87% EP vs 80% LEP, p=0.342) and signed DNR form (92% EP vs 89% LEP, p=0.549). The median time from CPHC referral to death was 10 weeks EP vs 15 weeks LEP (p=0.039). The median time from signed DNR to death was 5 weeks EP vs 6 weeks LEP (p=0.806). There was no statistically significant difference in location of death between the two groups: acute care 20% EP vs 24% LEP, home 27% EP vs 13% LEP, hospice 36% EP vs 39% LEP, and tertiary palliative care unit 17% EP vs 24% LEP (p=0.251). Conclusions: EP and LEP patients with NSCLC had similar rates of CPHC service referrals and end of life planning. This suggests assistance of medical interpreters at the time of oncology visits help message delivery between LEP patients and HCPs. LEP patients had earlier referrals to CPHC prior to death which may reflect an enhanced awareness and effort by HCPs to have earlier conversations with patients who may have language and cultural barriers with discussing goals of care. Good communication improves patients and their family’s understanding of the goals and scope of palliative care services and allow HCPs to better understand the patients’ wishes.

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