Marketing Palliative Care

Author(s):  
Rolfe Sean Morrison ◽  
Bridget Tracy

This article examines why palliative care remains inaccessible to most persons with serious illness, citing the lack of a successful social marketing platform directed to consumers as a primary reason. It argues that the growth of palliative care has been hindered by the failure of palliative care professionals to consider the basic principles of social marketing in early language and messaging. The article first provides a historical background on the development of modern hospice care and of palliative care before turning to a discussion of how palliative care has failed to generate widespread public support and engagement. It then considers how early messaging by palliative care professionals hindered referrals to palliative care by other health-care professionals and concludes by explaining how recent attempts to use principles of audience research and targeted social marketing have led to the rapid spread and uptake of palliative care services in the United States.

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Leslye Rojas-Concha ◽  
Maiken Bang Hansen ◽  
Morten Aagaard Petersen ◽  
Mogens Groenvold

An amendment to this paper has been published and can be accessed via the original article.


2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 73-73 ◽  
Author(s):  
Anne-Tove Brenne ◽  
Anne Kari Knudsen ◽  
Cinzia Brunelli ◽  
Vidar Halsteinli ◽  
Stein Kaasa

73 Background: Palliative care early in the cancer disease trajectory may improve health related quality of life for patients and their families. Collaboration between community and specialist health care professionals is paramount to achieve optimal cancer care. The objective of this study is to develop and to implement this model into our health care system.The target population is cancer patients with metastatic and/ or loco-regional disease. Methods: The study takes place in a rural district of 13 municipalities with a local hospital (Orkdal) in Mid Norway. It is designed as a prospective controlled observational pre- post cohort study with four main interventions: 1. Development and implementation of a standardized care pathway across health care levels, 2. Educational programme for health care professionals, 3. Information about cancer and palliative care to the public, 4.Information,education and support to family members.Outcomes are patient’s time spent at home, family member’s health related quality of life, improvement of health care providers’ knowledge and skills and distribution of health care service use. Results: A standardized care pathway for all palliative cancer patients including home care, care in nursing homes, and specialist care in hospitals (in- and outpatients) is developed. It focuses on access to palliative care services, transfer of medical data, and symptom assessment. The educational program consists of two parts; one to inform about the project and the standardized care pathway, and one to improve competence and skills in cancer palliative care. To the general public, information regarding chemo- and radiotherapy, symptom diagnosis and treatment and palliative care services in general is given. Conclusions: A total integrated model to improve care for cancer patients was developed focusing on collaboration between community and specialist health care, and on early integration of palliative care in the traditional cancer care trajectory. Improved care for cancer patients and their families in the Orkdal region to equal costs is expected. The Orkdal Model may be applied in other regions and for other chronic diseases. Clinical trial information: NCT02170168.


Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 4110-4110
Author(s):  
Samer Al Hadidi ◽  
Deepa Dongarwar ◽  
Hamisu Salihu ◽  
Carolina Schinke ◽  
Sharmilan Thanendrarajan ◽  
...  

Abstract INTRODUCTION Health disparities in immunoglobulin light chain (AL) amyloidosis have not been well described. We aimed to assess if health disparities between non-Hispanic (NH)-Whites, NH-Blacks and Hispanics exist and to describe differences between different ethnic/racial groups. METHODS We conducted a retrospective cross-sectional analysis of in-patient AL amyloidosis hospitalizations from 2016 to 2018 using the Nationwide Inpatient Sample (NIS), a database which provides nationally representative information on hospitalizations in the U.S. The studied period was chosen to capture data from the ICD-10-CM codes to avoid misclassification of AL amyloidosis which was grouped with other cases of ATTR amyloidosis in the ICD-9-CM coding system. All hospitalizations in adults (age ≥18 years) were included. The exposure for the study was the occurrence of AL amyloidosis in the discharge records. Outcomes were [1] in-hospital death [2] chemotherapy use; [3] intensive care unit (ICU) utilization; [4] palliative care consultation. The analysis for this study was performed using R program version 3.5.1; a 5% type I error rate for all hypothesis tests (two-sided) was assumed. RESULTS Admissions related to AL amyloidosis constituted 0.03% of all hospitalizations in the study period (25,470 of 90,869,381). The prevalence of AL amyloidosis related hospitalizations was higher in NH-Blacks when compared with NH-Whites (42.8 vs.28.1 per 100,000 hospitalizations). AL amyloidosis related in-hospital mortality rate was higher in NH-Whites and Hispanics when compared to NH-Blacks (6.6%% and 6.2% vs. 4.9%). In-hospital mortality with AL amyloidosis was higher in older patients, males and those who self-paid for their treatment. Utilization of ICU care was more common in NH-Blacks when compared to NH-Whites (6% vs. 4.8%). Hispanics had the lowest inpatient chemotherapy use (1.7% vs. 2.9%). Multivariable adjusted association between race/ethnicity and various outcomes showed a trend towards lower in-hospital mortality in NH-Blacks when compared to NH-Whites (OR: 0.76, 95% CI: 0.55-1.05, p=0.09) and lower utilization of palliative care services in NH-Blacks when compared with NH-Whites (OR: 0.61, 95% CI: 0.42-0.88, p=0.01). Despite very low numbers of transplant related admissions, such admissions occurred only in NH-Whites. CONCLUSIONS Our findings highlight disparities in AL amyloidosis care for NH-Blacks and Hispanics. NH-Blacks tend to have lower in-hospital mortality with higher utilization of ICU care, nevertheless, they receive the lowest palliative care services. Despite the higher utilization of ICU care, data suggest possible superior outcomes of AL amyloidosis in NH-Blacks when compared to NH-Whites. Disclosures No relevant conflicts of interest to declare.


2019 ◽  
Author(s):  
Leslye Rojas-Concha ◽  
Maiken Bang Hansen ◽  
Morten Aagaard Petersen ◽  
Mogens Groenvold

Abstract Background: The assessment of patients’ quality of life (QOL) is essential when evaluating the outcome of palliative care; however, no instruments have been validated for measuring symptoms and QOL in patients receiving palliative care in Chile. We aimed to investigate the content validity of the EORTC Quality of Life Questionnaire Core 15 Palliative Care (QLQ-C15-PAL), replicating the methods used previously to shorten the EORTC Quality of Life Questionnaire Core 30 (QLQ-C30) for use among patients in palliative care.Methods: This cross-sectional study was conducted from October to November 2017 in four palliative care services. Patients with advanced cancer and health care professionals (HCPs) were invited to individual interviews to determine the relevance, appropriateness and relative importance of the 30 items of the QLQ-C30 for evaluating the outcome of palliative care, and whether relevant additional issues should be included. Results: A total of 48 patients and 35 HCPs participated. The most important dimensions selected were pain, physical functioning, sleeping difficulties, emotional functioning, nausea/vomiting, fatigue, and social functioning. Qualitative data identified important additional issues not covered by the questionnaire such as satisfaction with care, emotions and psychological support, as well as linguistic issues in the dyspnea and constipation items. Conclusions: The EORTC QLQ-C15-PAL showed good content validity in the assessment of symptoms and QOL of advanced cancer patients; therefore, we recommend the use of this questionnaire in palliative care in Chile. Dyspnea and constipation items were revised by the EORTC group. More research is needed to add a social dimension for a comprehensive assessment of patients’ QOL.


2019 ◽  
Vol 17 (6) ◽  
pp. 643-649 ◽  
Author(s):  
J. Nicholas Dionne-Odom ◽  
Katherine A. Ornstein ◽  
Erin E. Kent

AbstractObjectiveDespite their key role in caring for individuals with serious, chronic illness, there have been no national studies examining family caregiver awareness and perceptions of palliative care. Hence, our objectives were to ascertain level of knowledge of palliative care among U.S. family caregivers and describe demographic variation in awareness and perceptions of palliative care.MethodUsing the 2018 National Cancer Institute Health Information National Trends Survey, we identified unpaid family caregivers caring or making healthcare decisions for someone with a medical, behavioral, disability, or other condition. Respondents were asked about their awareness of the term “palliative care” and, if aware, how much they agreed with statements representing common (mis)perceptions about palliative care (e.g., “Palliative care is the same as hospice”).ResultMore than one-half of caregivers (55%) had “never heard” of palliative care; 19.2% knew what palliative care was and “could explain it to someone else.” In adjusted models, racial minorities (vs. whites) and those without a college degree were less likely to have heard of palliative care. Among those aware of palliative care, ~40% “strongly” or “somewhat” agreed that “Palliative care is the same as hospice”; another 10.5% “didn't know.” Similarly, 40% reported that “When I think of palliative care, I automatically think of death.”Significance of resultsOne-half of family caregivers of adults with serious chronic illness have never heard of palliative care. Even among those who had heard of palliative care, the majority do not distinguish it from hospice care and death. Given the role family caregivers may play in decisions to access palliative care, public messaging efforts are needed to clarify palliative care services in a way that is patient- and family-centered.


2020 ◽  
Vol 26 (6) ◽  
pp. 292-300
Author(s):  
Helen Walthall ◽  
Christie Roberts ◽  
Dan Butcher ◽  
Sue Schutz

Background: Heart failure is highly prevalent with poor outcomes, yet only a small proportion of patients receive specialist palliative care services. Aim: To explore if a programme focusing on support and symptom management of people with heart failure in a hospice environment would be acceptable and of benefit to patients. Methods: A pre/post intervention study design using mixed methods was used to evaluate the programme. The programme was delivered in 2-hour time slots over a period of 8 weeks. Participants completed three questionnaires pre- and post- and were interviewed within 1 week of completion. The study was conducted between June 2014 and January 2015. Findings: A response rate of 51.7% (n=15) was narrowed to a final sample size of 12 patients. The questionnaire results showed a positive impact on participants' wellbeing and views regarding the use of a hospice, but a desire for greater focus on emotional support. Four key themes emerged from inductive qualitative analysis: demystifying perceptions about hospice care; positivity about wellbeing; learning together; and consideration of end-of-life preparation. Conclusion: This adapted programme provides a useful model for the increased integration of palliative care into provision for those living with advancing heart failure.


2020 ◽  
Vol 34 (4) ◽  
pp. 513-523 ◽  
Author(s):  
Deokhee Yi ◽  
Bridget M Johnston ◽  
Karen Ryan ◽  
Barbara A Daveson ◽  
Diane E Meier ◽  
...  

Background: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access. Aim: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries. Design: Mortality follow-back survey. Costs were calculated from carers’ reported service use and unit costs. Setting: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco). Participants: Informal carers of decedents who had received palliative care participated in the study. Results: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly ( F = 25.79/14.27, p < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%–16%, palliative care 1%–15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction. Conclusion: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.


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