Journal of Palliative Care & Medicine
Open Access

Holistic palliative care; Correctional facilities; Spirituality; Mindfulness; Patient perspective; Incremental development

Introduction

As the global population of elderly individuals in correctional facilities continues to rise, the imperative of providing palliative care for this demographic becomes increasingly evident. While compassionate release stands as the primary consideration for those in need of palliative or end-of-life care within correctional settings, the prevalence of obstacles to such releases underscores the necessity of delivering high-quality basic palliative care within the confines of prisons [1-4]. Timely access to specialized palliative care services, ideally situated within tertiary hospitals, should be ensured for incarcerated individuals facing palliative care needs beyond the scope of basic provisions or those experiencing rapid deterioration. Although correctional healthcare staff often meets the fundamental palliative care requirements of individuals in custody, challenges arise when addressing the complex or escalating palliative care needs of certain individuals within the prison environment [5]. Despite the escalating demand, there exists no standardized approach to delivering palliative care in correctional facilities, and scant data are available regarding the quality and accessibility of prison-based palliative care for those in need. Unlike other healthcare settings, routine monitoring and reporting of correctional healthcare using quality indicators are underutilized, complicating efforts to assess and evaluate the care provided to incarcerated individuals. Establishing agreed-upon criteria and quality indicators for palliative care in prisons is pivotal for ensuring accessible and equitable high-quality care. Quality indicators serve as tools for fostering transparency and accountability while striving to improve specific outcomes. Without such indicators that clearly evaluate and compare healthcare against an agreed-upon baseline, identifying areas where treatment falls short of patient requirements or deviates from established standards becomes challenging [6]. Leveraging insights gained from analogous initiatives in other community settings can guide the development of these indicators, ultimately contributing to the creation of a comprehensive framework for high-quality, equitable palliative care in correctional facilities. Analyzing existing sets of healthcare indicators in correctional facilities, along with those in community-based palliative care, can serve as a valuable foundation for developing indicators specifically tailored to prison-based palliative care.

The challenge of evidence gathering lies in the scarcity of standardized data for cross-country comparisons in both community palliative care and general correctional healthcare. This shortage poses a significant obstacle to the creation and implementation of palliative care indicators. Even in countries recognized for providing high-quality palliative care, the universal implementation of national palliative careoriented datasets in the community remains incomplete, despite the acknowledged goal of enhancing standardized data collection for service improvement. Within established systems where data on palliative care activities is regularly compiled, inconsistencies in reporting within and across services complicate the assessment of palliative care quality. Although jail health data is highly esteemed internationally, its recording is inconsistent and challenging to obtain, constraining performance evaluation within correctional healthcare systems. The initial crucial step towards implementing quality indicators is to enhance the capability to collect frequent, clinically valuable data on the organization, methods, and outcomes of prison-based palliative care [7]. Utilizing health information technology, which involves automated data extraction from electronic health records, presents a cost-effective alternative to time-consuming manual data retrieval. It also allows for greater flexibility in the frequency and emphasis of data collection. However, these elements are frequently absent or underutilized within the penal system. As these changes are implemented, the creation of indicators should be pragmatic to accommodate limited resources and health information systems. Priority should be given to indicators that leverage readily available data from existing systems, accurately reflect palliative care within the prison context, and are widely recognized as effective measures of health in community settings. This approach encourages the gradual and long-term establishment of mechanisms for collecting, extracting, analyzing, and providing feedback on data to improve the quality of palliative care in correctional facilities.

Striking a harmonious balance: crafting palliative care indicators

An essential consideration in the development of indicators for palliative care is achieving a balanced representation. Presently, both community-based palliative care and correctional facility indicator sets exhibit an uneven distribution of variables, encompassing assessments of healthcare system structure, care processes, activities, and patient outcomes. Notably, community palliative care indicators have historically emphasized procedural and outcome-focused variables over structural measurements, a trend that has evolved over time. Conversely, prison-based indicators have placed significant value on process variables characterizing care delivery. While it is acknowledged that indicator sets do not necessitate an equal quantity of each type, recognizing the unique and valuable information offered by each indicator category is crucial. Striking a balance between structural, process, and outcome indicators leverages the strengths and addresses the limitations of each, thereby enriching the overall understanding of healthcare [8,9]. Given the current lack of outcome indicators in the prison setting, future palliative care indicators within correctional facilities should better reflect the growing emphasis on outcome indicators observed in community palliative care sets. Patient-reported outcome and experience measures, though arguably more challenging to assess and interpret, offer a holistic reflection of healthcare quality. They go beyond capturing a single process within a broader system, providing a nuanced understanding of the patient's perspective. Incorporating such measures into palliative care indicators can contribute to a more comprehensive evaluation of healthcare quality. While patient-reported measures may not always directly translate to improvement strategies, they play a vital role in understanding the overall impact of care on individuals. In addition to outcome indicators, structural metrics are invaluable for understanding disparities in facility and equipment standards among correctional institutions, provinces, and nations [10-13]. Current jail quality indicator sets often overlook resource and organizational metrics, despite widespread challenges such as staffing and equipment shortages. Establishing benchmarks for essential palliative care training for healthcare professionals, ensuring the availability of critical equipment like pressure mattresses, and assessing the adequacy of physical environments in correctional facilities can contribute to universally improving the essential components of palliative care across all prisons. This comprehensive approach may reduce the likelihood of hospital admissions for palliative care needs that can be appropriately addressed within correctional facilities, enhancing the overall accessibility and quality of palliative care in the prison setting.

Development of indicators to reflect environmental changes

Considering the demographic and medical variations between palliative care populations in the community and correctional facilities, and the absence of evidence-based clinical guidelines tailored specifically for the prison setting, it is likely that future indicator sets for prison palliative care will require a combination of adopting community indicators and a consensus-driven adaptation or creation of indicators designed explicitly for the unique prison environment [14,15]. Enhanced national and international coordination, as advocated in the community setting, would mitigate duplication of effort in constructing indicator sets for palliative care in prisons.

Discussion

The lack of clear parameters for determining the appropriateness of existing community-based indicators for use in the prison environment poses a challenge. Without explicit criteria to standardize these options, newly created sets may deviate from the established research base and community care standards, potentially resulting in prison-based quality metrics that no longer represent best-practice care. In the absence of evidence-based recommendations, a thorough and iterative engagement process with a diverse range of stakeholders becomes crucial to ensuring that the indicators created are practical, address recognized special requirements within the prison system and population, and are suitable for application across various prison systems. Co-designing indicators with significant external and internal correctional stakeholders will help focus development on prison-specific palliative care health challenges. This collaborative approach ensures that any new indicators, whenever possible, align with evidence-based community standards. The inclusion of individuals who have experienced incarceration should be explored to enhance the incorporation of the patient perspective, an aspect increasingly valued in community-based healthcare assessment. Mechanisms such as 'citizen's juries,' composed of individuals in jail, recently utilized to define health priorities in Australian prisons, could prove to be a valuable tool for incorporating the patient voice into the development of palliative care indicators within the prison setting.

Conclusion

Establishing standardized, prison-based palliative care indicators is pivotal for obtaining crucial data that will broaden the scope of services and enhance their quality and accessibility. A collaborative approach to indicator development not only reduces the costs associated with their production but also facilitates the collection and comparison of core indicators across regions or nations. This approach allows for the incorporation of indicators relevant to local requirements, ensuring a nuanced understanding of the unique needs within different contexts.

Prioritization is of utmost importance during the initial phases of indicator development, recognizing that practical constraints will limit the number of indicators that can be effectively operationalized. Adopting a sustainable strategy involves commencing with a modest set of simple, clinically meaningful metrics and building upon incremental gains. By taking this approach, it becomes more feasible to bridge the growing gap between patient needs and attainable treatment options. Drawing on lessons learned in the community, implementing practical steps to improve palliative care in correctional facilities will contribute to a more comprehensive and effective indicator collection over time.

Acknowledgement

Not applicable.

Conflict of Interest

Author declares no conflict of interest.

1. Booth CM, Eisenhauer EA (2012) Progression-free survival: meaningful or simply measurable? J Clin Oncol 30: 1030-1033.

Indexed at, Google Scholar, Crossref

2. Eton DT, Fairclough DL, Cella D, Yount SE, Bonomi P, et al. (2003) Early change in patient-reported health during lung cancer chemotherapy predicts clinical outcomes beyond those predicted by baseline report: results from Eastern Cooperative Oncology Group Study 5592. J ClinOncol 21:536-543.

Indexed at, Google Scholar, Crossref

3. Cella D, Cappelleri JC, Bushmakin A, Charbonneau C, Li JZ, et al. (2009) Quality of life predicts progression-free survival in patients with metastatic renal cell carcinoma treated with sunitinib versus interferon alfa. J Oncol Pract 5: 66-70.

Indexed at, Google Scholar, Crossref

4. Carey MS, Bacon M, Tu D, Butler L, Bezjak A, et al. (2008) The prognostic effects of performance status and quality of life scores on progression-free survival and overall survival in advanced ovarian cancer. Gynecol Oncol 108:100-105.

Indexed at, Google Scholar, Crossref

5. Reck M, Thatcher N, Smit EF, Lorigan P, Szutowicz-Zielinska E, et al. (2012) Baseline quality of life and performance status as prognostic factors in patients with extensive-stage disease small cell lung cancer treated with pemetrexed plus carboplatin vs. etoposide plus carboplatin. Lung Cancer 78:276-281.

Indexed at, Google Scholar, Crossref

6. Worldwide Hospice Palliative Care Alliance (2020) Global Atlas of Palliative Care.
7. Jordan RI, Allsop MJ, ElMokhallalati Y, Jackson CE, Edwards HL, et al. (2020) Duration of palliative care before death in international routine practice: a systematic review and meta-analysis. BMC Med 18:1-25.

Indexed at, Google Scholar, Crossref

8. Nishimura F, Carrara AF, Freitas CE (2019) Effect of the Melhor em Casa program on hospital costs. Rev Saude Publica 53:104.

Indexed at, Google Scholar, Crossref

9. Haj-Ali W, Moineddin R, Hutchison B, Wodchis WP, Glazier RH (2020) Role of Interprofessional primary care teams in preventing avoidable hospitalizations and hospital readmissions in Ontario, Canada: A retrospective cohort study. BMC Health Serv Res 20:782.

Indexed at, Google Scholar, Crossref

10. Hackett J, Ziegler L, Godfrey M, Foy R, Bennett MI (2018) Primary palliative care team perspectives on coordinating and managing people with advanced cancer in the community: A qualitative study. BMC Fam Pract 19:177.

Indexed at, Google Scholar, Crossref

11. Kamal AH, Bausewein C, Casarett DJ, Currow DC, Dudgeon DJ, et al. (2020) Standards, Guidelines, and Quality Measures for Successful Specialty Palliative Care Integration into Oncology: Current Approaches and Future Directions. J Clin Oncol 38:987-99.

Indexed at, Google Scholar, Crossref

12. Hui D, Bruera E (2016) Integrating palliative care into the trajectory of cancer care. Nat Rev Clin Oncol 13:159-171.

Indexed at, Google Scholar, Crossref

13. Rangachari D, Smith TJ, Kimmel S (2013) Integrating Palliative Care in Oncology: The Oncologist as a Primary Palliative Care Provider. Cancer J 19:373.

Indexed at, Google Scholar, Crossref

14. Schenker Y, Arnold R (2015) The Next Era of Palliative Care. JAMA 314:1565.

Indexed at, Google Scholar, Crossref

15. Schenker Y, Crowley-Matoka M, Dohan D, Rabow MW, Smith CB, et al. (2014) Oncologist Factors That Influence Referrals to Subspecialty Palliative Care Clinics. J Oncol Pract 10:e37.

Indexed at, Google Scholar, Crossref