Social disparities and symptom burden in populations with advanced cancer: specialist palliative care providers’ perspectives

Abstract Background Specialist palliative care (SPC) providers tend to use the term ‘complex’ to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. Methods Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. Results Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. Conclusions Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.

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Does acupressure help reduce nausea and vomiting in palliative care patients? A double blind randomised controlled trial

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2020-002434 ◽

2020 ◽

pp. bmjspcare-2020-002434

Author(s):

Paul Perkins ◽

Anne Parkinson ◽

Rebecca Parker ◽

Alison Blaken ◽

Ralph K Akyea

Keyword(s):

Palliative Care ◽

Randomised Controlled Trial ◽

Advanced Cancer ◽

Controlled Trial ◽

Acupuncture Point ◽

Nausea And Vomiting ◽

Specialist Palliative Care ◽

Double Blind ◽

Anticancer Treatment ◽

Randomised Controlled

IntroductionNausea and vomiting are common symptoms for patients with advanced cancer. While there is evidence for acupuncture point stimulation for treatment of these symptoms for patients having anticancer treatment, there is little for when they are not related to such treatment.ObjectiveTo determine whether acupressure at the pericardium 6 site can help in the treatment of nausea and vomiting suffered by palliative care patients with advanced cancer.Materials and methodsDouble blind randomised controlled trial—active versus placebo acupressure wristbands. In-patients with advanced cancer in two specialist palliative care units who fitted either or both of the following criteria were approached: Nausea that was at least moderate; Vomiting daily on average for the prior 3 days.Results57 patients were randomised to have either active or placebo acupressure wristbands. There was no difference in any of the outcome measures between the two groups: change from baseline number of vomits; Visual Analogue Scale for ‘did acupressure wristbands help you to feel better?’; total number of as needed doses of antiemetic medication; need for escalation of antiemetics.ConclusionsIn contrast to a previously published feasibility study, active acupressure wristbands were no better than placebo for specialist palliative care in-patients with advanced cancer and nausea and vomiting.

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2013 National Cancer Specialist Palliative Care Training Class was held in Wuhan

The Chinese-German Journal of Clinical Oncology ◽

10.1007/s10330-013-1197-8 ◽

2013 ◽

Vol 12 (7) ◽

pp. 353-354

Author(s):

Yi Cheng

Keyword(s):

Palliative Care ◽

Specialist Palliative Care ◽

Training Class ◽

Care Training ◽

Cancer Specialist

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Coping with uncertainty: A qualitative study of 33 palliative care consultations among patients with advanced cancer.

Journal of Clinical Oncology ◽

10.1200/jco.2014.32.31_suppl.92 ◽

2014 ◽

Vol 32 (31_suppl) ◽

pp. 92-92

Author(s):

Mohamedtaki Abdulaziz Tejani ◽

Charles Stewart Kamen ◽

Supriya Gupta Mohile ◽

Robert E. Gramling

Keyword(s):

Palliative Care ◽

End Of Life ◽

Cancer Patients ◽

Advanced Cancer ◽

Descriptive Analysis ◽

Care Providers ◽

Advanced Cancer Patients ◽

Patient Centered ◽

The Future ◽

Research Working Group

92 Background: Despite scientific advances, uncertainty remains an inherent and significant issue in clinical practice. Among patients with advanced cancer, uncertainty about the future can lead to distress, loss of sense of control and lower quality of life. Helping patients manage uncertainty is a core domain of patient-centered care. Little is known about how palliative care providers work with cancer patients to accomplish this goal. Methods: We performed descriptive analysis of transcripts from audio recorded inpatient palliative care consultations among adult cancer patients referred for ‘goals of care’ or ‘end of life decision making.’ Each transcript was read as a whole and then again line by line to code verbal expressions of uncertainty. Excerpted segments dealing with uncertainty about the future were grouped and analyzed by an experienced qualitative research working group. Results: 33 consultations were analyzed: 53% men, median age 62 and median survival 3.6 weeks. Multiple expressions of uncertainty were identified – 106 by patients/families and 56 by providers. A majority (63%) were centered on the inevitable uncertainty in predicting clinical course at the end of life. Palliative care providers managed this type of uncertainty in three main ways: (a) pairing expressions of unpredictability with reiteration of what was certain/known at time of consultation (e.g. ‘we will not let you suffer’); (b) utilizing inherent uncertainty of future to promote hope and faith (e.g. ‘nobody knows how long you are going to live’) and (c) reassurance that multi-disciplinary providers would convene to provide consensus and clarity for next visit (e.g. ‘we will all put our heads together and come up with exactly which options are available.’). Conclusions: Uncertainty is highly prevalent during end of life consultations with advanced cancer patients. Palliative care providers use validating strategies to help patients acknowledge and cope with what is inherently uncertain about their future. These methods can be used to develop communication training and guidelines for use with advanced cancer patients at the end of life.

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The influence of a cachexia clinic on palliative care integration in oncology.

Journal of Clinical Oncology ◽

10.1200/jco.2017.35.31_suppl.124 ◽

2017 ◽

Vol 35 (31_suppl) ◽

pp. 124-124

Author(s):

Diane Portman ◽

Sarah Thirlwell ◽

Kristine A. Donovan

Keyword(s):

Palliative Care ◽

Weight Loss ◽

Advanced Cancer ◽

Symptom Burden ◽

Symptom Assessment ◽

Cancer Center ◽

Edmonton Symptom Assessment Scale ◽

Symptom Assessment Scale ◽

The Impact

124 Background: Appetite and weight loss are common in patients with advanced cancer and specialized cachexia clinics have been established to address these symptoms. Given the association between anorexia/cachexia and other adverse symptoms, these patients may also benefit from specialty level palliative care (PC). However, referral to outpatient specialty level PC is often delayed or does not occur. We sought to examine the prevalence of other factors associated with appetite and weight loss in patients with advanced cancer and the impact of a specialized cachexia clinic on identification and treatment of other PC needs. Methods: The records of patients referred by their Oncologist to the cachexia clinic of a cancer center from August 2016 to June 2017 were reviewed retrospectively. Subjects who had been referred to PC by their Oncologist were excluded. Patients had been assessed for symptom burden using the Edmonton Symptom Assessment Scale (ESAS-r). Patients identified with PC needs had been referred to the PC clinic for follow-up within 30 days after cachexia clinic consultation. Results: Thirty subjects were evaluated in the cachexia clinic (average age 68 years; 63% female). The predominant diagnosis was lung cancer (70%). An average of 6 symptoms per patient were in the moderate to severe range on ESAS, excluding appetite. Depression, fatigue and pain were most common. The average cachexia clinic total ESAS score was 51.61. Only 17% of patients had completed advance directives. Ninety-three % of patients were referred to PC and 68% were seen. The average number of PC visits was 2.79. Within the PC clinic, advance directive completion increased to 37%, goals of care discussion occurred with 50% and 17% received hospice referrals. At the most recent follow-up in the PC clinic, the average total ESAS score had decreased by 11.44 (22%) and all ESAS item scores were improved on average. Conclusions: The cachexia clinic proved a useful means to identify other PC needs and achieve effective PC referrals. We suggest this is proof of concept that specialty clinics can be a meaningful way to achieve an earlier entry point to comprehensive PC in patients who were not previously referred by their Oncologists.

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Evaluation of coordination of cancer care between designated cancer hospitals and primary care providers: Results from a nationwide survey in Japan.

Journal of Clinical Oncology ◽

10.1200/jco.2018.36.7_suppl.84 ◽

2018 ◽

Vol 36 (7_suppl) ◽

pp. 84-84

Author(s):

Taro Tomizuka ◽

Tomone Watanabe ◽

Satoru Kamitani ◽

Takahiro Higashi

Keyword(s):

Primary Care ◽

Palliative Care ◽

Care Coordination ◽

Cancer Care ◽

Critical Path ◽

Primary Care Providers ◽

Care Providers ◽

Follow Up Care ◽

Cancer Specialist

84 Background: To improve coordination of cancer care between cancer specialist hospitals and primary care providers (PCPs), the Japanese government accredited cancer specialist hospitals, so called “designated cancer care hospitals (DCCHs)” and introduced “Cancer care coordination instruction fee” which PCPs can receive if they share a cancer critical path (Japanese version of Survivorship Care Plans) of each cancer patient with DCCHs. We sought to assess the current status of coordination of cancer care in Japan and communication between DCCHs and PCPs from PCPs’ point of view. Methods: A cross-sectional mail survey was administered to randomly selected clinic-based PCPs (4,000 clinics) from a nation-wide database of medical institutions authorized by Ministry of Health, Labour and Welfare Japan to treat patients with health insurance (87,869 clinics). The survey evaluated how much PCPs provided cancer follow-up care and how well DCCHs coordinated care and communicated with PCPs in cancer survivorship. Results: 1,873 PCPs returned the questionnaire (response rate: 46.8%). 1,223 (65.3%) answered to provide cancer follow-up care in outpatient setting. Most of the PCPs which provided cancer follow-up care evaluated the care coordination and support by DCCHs were satisfactory (946, 77.4%) but the degree of good evaluation varied by region (highest: 91.3%, lowest: 45.8%). In regression analysis, provision of palliative care by PCPs (OR 1.52 95%CI 1.05-2.17) and use of cancer critical path (OR 2.10 95%CI 1.63-2.71) were significantly correlated with better evaluation of communication and care coordination. Conclusions: DCCHs communicated well with PCPs and PCPs were satisfied with the communication and care coordination by DCCHs. Provision of palliative care by PCPs and use of cancer critical path are likely to lead good care coordination in cancer care.

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The ESCAPADE Study: Early supportive care for advanced cancer patients, assessing care delivery and provider engagement.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.15_suppl.e23142 ◽

2019 ◽

Vol 37 (15_suppl) ◽

pp. e23142-e23142

Author(s):

Oren Hannun Levine ◽

Daryl Bainbridge ◽

Gregory Russell Pond ◽

Marissa Slaven ◽

Sukhbinder K. Dhesy-Thind ◽

...

Keyword(s):

Palliative Care ◽

Disease Management ◽

Cancer Patients ◽

Advanced Cancer ◽

Healthcare Providers ◽

Primary Care Providers ◽

Newly Diagnosed ◽

Care Providers ◽

Advanced Cancer Patients ◽

Gi Cancer

e23142 Background: Advanced cancer patients benefit from early integration of palliative care (EIPC) with usual care. A proposed model of EIPC reserves specialized palliative care (SPC) for complex patients, while primary care providers (PCP) and oncologists oversee basic palliative care (PC). We studied the attitudes among patients and their healthcare providers regarding delivery of EIPC. Methods: A cross-sectional study at a tertiary cancer centre in Ontario. Patients with newly diagnosed incurable gastrointestinal (GI) cancer were surveyed using a study specific instrument for the outcomes of interest: importance of and preferences for accessing support across 8 domains of PC (disease management, physical, psychological, social, spiritual, practical, end of life care, loss and grief). Healthcare providers within the circle of care completed a parallel survey for each recruited patient. Primary analysis involved use of descriptive statistics to summarize survey results and concordance between patient and provider responses. Results: From Oct 2017 - Nov 2018, 67 patients were surveyed (median age 69, 34% female). 90% had an identified medical oncologist, and 19% had SPC. 97% had a PCP, but only 42% listed a PCP as part of the care team. Median time from first oncology assessment for advanced cancer to patient survey completion was 52.5 days. 85 providers responded (oncologist = 59, PCP = 20, SPC = 6; response rate 92%; 1-3 physician responses per patient). Disease management and physical concerns were most important to patients. In these domains, 67% and 81% of patients endorsed receiving care from the preferred provider, but concordance between patient and physician responses regarding most responsible provider was only 58% and 38%. For all other domains, 87 – 100% of patients attributed primary responsibility to self or family rather than any healthcare provider. Conclusions: Respondents did not assign responsibility to physicians early in the disease trajectory for many domains of PC. Our findings suggest that incorporating patient activation and empowerment into EIPC requires further study. PCPs appeared to have limited involvement in PC for newly diagnosed advanced GI cancer patients.

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Randomised clinical trial of early specialist palliative care plus standard care versus standard care alone in patients with advanced cancer: The Danish Palliative Care Trial

Palliative Medicine ◽

10.1177/0269216317705100 ◽

2017 ◽

Vol 31 (9) ◽

pp. 814-824 ◽

Cited By ~ 29

Author(s):

Mogens Groenvold ◽

Morten Aagaard Petersen ◽

Anette Damkier ◽

Mette Asbjoern Neergaard ◽

Jan Bjoern Nielsen ◽

...

Keyword(s):

Clinical Trial ◽

Palliative Care ◽

Advanced Cancer ◽

Standard Care ◽

Primary Outcome ◽

Randomised Clinical Trial ◽

Sensitivity Analyses ◽

Specialist Palliative Care ◽

Beneficial Effects ◽

Secondary Outcomes

Background: Beneficial effects of early palliative care have been found in advanced cancer, but the evidence is not unequivocal. Aim: To investigate the effect of early specialist palliative care among advanced cancer patients identified in oncology departments. Setting/participants: The Danish Palliative Care Trial (DanPaCT) (ClinicalTrials.gov NCT01348048) is a multicentre randomised clinical trial comparing early referral to a specialist palliative care team plus standard care versus standard care alone. The planned sample size was 300. At five oncology departments, consecutive patients with advanced cancer were screened for palliative needs. Patients with scores exceeding a predefined threshold for problems with physical, emotional or role function, or nausea/vomiting, pain, dyspnoea or lack of appetite according to the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) were eligible. The primary outcome was the change in each patient’s primary need (the most severe of the seven QLQ-C30 scales) at 3- and 8-week follow-up (0–100 scale). Five sensitivity analyses were conducted. Secondary outcomes were change in the seven QLQ-C30 scales and survival. Results: Totally 145 patients were randomised to early specialist palliative care versus 152 to standard care. Early specialist palliative care showed no effect on the primary outcome of change in primary need (−4.9 points (95% confidence interval −11.3 to +1.5 points); p = 0.14). The sensitivity analyses showed similar results. Analyses of the secondary outcomes, including survival, also showed no differences, maybe with the exception of nausea/vomiting where early specialist palliative care might have had a beneficial effect. Conclusion: We did not observe beneficial or harmful effects of early specialist palliative care, but important beneficial effects cannot be excluded.

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