Palliative Care Clinical Practice Research Articles

An Update: NIH Research Funding for Palliative Medicine, 2011-2015.

The evidence base to support palliative care clinical practice is inadequate and opportunities to improve the palliative care evidence base remain despite the field's rapid growth. To examine current NIH funding of palliative medicine research, changes since our 2013 report, and trends since our 2008 report. We sought to identify NIH funding of palliative medicine from 2011 to 2015 in two stages: (I) we searched the NIH grants database "RePorter" for grants with key words "palliative care," "end-of-life care," "hospice," and "end of life" and (II) we identified palliative care researchers likely to have secured NIH funding using three strategies. We abstracted (1) the first and last authors' names from original investigations published in major palliative medicine journals from 2013 to 2015; (2) these names from a PubMed-generated list of original articles published in major medicine, nursing, and subspecialty journals using the above key words; and (3) palliative medicine journal editorial board members and key members of palliative medicine initiatives. We crossmatched the pooled names against NIH grants funded from 2011 to 2015. The author and NIH RePorter search identified 854 and 419 grants, respectively. The 461 grants categorized as relevant to palliative medicine represented 334 unique PIs. Compared to 2006-2010, the number of NIH-funded junior career development awards nearly doubled (6.1%-10%), articles published in nonpalliative care specialty journals tripled (13%-37%), published palliative care researchers increased by 2.5-fold (839-2120), and NIH-funded original palliative medicine research articles doubled (21%-39%). Despite the challenging NIH funding climate, NIH funding to palliative care remained stable. The increase in early stage career development funding, palliative care investigators, and palliative medicine research published in nonpalliative medicine journals reflects important advances to address the workforce and evidence gaps. Further support for palliative care research is still needed.

Sleep–wake difficulties in community-dwelling cancer patients receiving palliative care: subjective and objective assessment

Prevalence rates of sleep difficulties in advanced cancer patients have varied widely across studies (12 to 96%), and none of these employed a diagnostic interview to distinguish different types of sleep-wake disorders. Moreover, very limited information is available on subjective and objective sleep parameters in this population. Our study was conducted in palliative cancer patients and aimed to assess rates of sleep-wake disorders and subsyndromal symptoms and to document subjective and objective sleep-wake parameters across various types of sleep-wake difficulties. The sample was composed of 51 community-dwelling cancer patients receiving palliative care and having an Eastern Cooperative Oncology Group score of 2 or 3. Relevant sections of the Duke Interview for Sleep Disorders were administered over the phone. An actigraphic recording and a daily sleep diary were completed for 7 consecutive days. Overall, 68.6% of the sample had at least one type of sleep-wake difficulty (disorder or symptoms): 31.4% had insomnia and 29.4% had hypersomnolence as their main sleep-wake problem. Participants with insomnia as their main sleep difficulty had greater disruptions of subjective sleep parameters, while objectively-assessed sleep was more disrupted in patients with hypersomnolence comorbid with another sleep-wake difficulty.Significance of the Results:The high rates of sleep-wake difficulties found in this study indicate a need to screen more systematically for sleep-wake disorders, including insomnia and hypersomnolence, in both palliative care research and clinical practice, and to develop effective nonpharmacological interventions specifically adapted to this population.

Pilot Study of an Interprofessional Palliative Care Curriculum: Course Content and Participant-Reported Learning Gains.

The National Consensus Project for Quality Palliative Care Clinical Practice Guidelines recommend that palliative care clinicians work together as interprofessional teams. We created and piloted a 9-month curriculum that focused on 3 related domains: (1) patient-centered, narrative communication skills; (2) interprofessional team practice; and (3) metrics and systems integration. The multifaceted curriculum was delivered through 16 webinars, 8 online modules, 4 in-person workshops, reflective skill practice, written reflections, and small group online discussions. Report evaluations of the course content and skill self-assessments from 24 interprofessional palliative care clinicians. Participants rated each learning activity and completed a retrospective pre-post test skill assessment. Learning gains were measured as the difference in the percentage of participants reporting "strong" or "highly competent" skill levels at baseline and the end of the course. Participants also provided examples of how they used the skills in practice. Participants achieved an average learning gain of 50% across all domains, and in each domain communication (54%), interprofessional team practice (52%), and metrics and systems integration (34%). They also gave high ratings for the curriculum content (overall mean [standard deviation] rating of 5.5 (0.7) out of 6). Examples of practice impacts included improved skills in responding to emotions, understanding the equal importance of all professions on their team and incorporating different perspectives into their practice, and learning about outcome measurement in palliative care. This curriculum demonstrated success in increasing perceived skills for interprofessional palliative care clinicians in advanced communication, team practice, and metrics and system integration.

Heart Problems, Easy Fixes: Practical Solutions for Overcoming Challenges in Conducting Palliative Care Research, Quality Improvement, and Clinical Practice in Heart Failure (FR476)

Heart Problems, Easy Fixes: Practical Solutions for Overcoming Challenges in Conducting Palliative Care Research, Quality Improvement, and Clinical Practice in Heart Failure (FR476)

Development of a question prompt sheet for cancer patients receiving outpatient palliative care.

25 Background: An effective communication strategy is the fundamental backbone in the delivery of an impeccable palliative care intervention. Different communication tools are sometimes utilized to enhance discussions between patients and their physicians. An example is a question prompt sheet (QPS) which is a structured list of potential questions available for the patient to ask their doctor during a clinical encounter. Although it has been shown to improve physician-patient interaction during clinical consultations, there is paucity of data on its use in the palliative care setting. The objective of this study was to develop a QPS that is feasible and applicable in palliative care clinical practice. Methods: An expert group of experienced physicians and mid-level providers were invited to participate in the study. The process was conducted in 3 Delphi rounds. In the last round, the top 25 questions with the highest level of endorsement were chosen and used towards the development of the QPS. Results: One hundred percent of the 22 experts invited to participate in the study accepted the invitation and completed all the 3 Delphi rounds. They consisted of 82% physicians and 18% mid-level providers. Participants were mostly males (59%), had a median age of 42 years, and a median of 8 years’ experience in palliative care. 98% of the top 25 questions for the QPS were endorsed by at least 50% of the expert panel in round 3. Twenty-eight percent of the questions were about symptoms, treatment and lifestyle, 24% were about commonly asked questions by caregivers, 20% were regarding end-of-life issues, 16% were regarding the nature of palliative care service, and 12% were regarding the type of available support. The question which had the highest number of endorsements among the panel members was “Is there someone I can talk to about my fears, concerns, spiritual or religious needs?” Conclusions: A 25-item, single page QPS containing some of the most relevant questions in diverse aspects of advanced cancer care and feasible for use in clinical practice was developed in this study. Further studies are needed to determine the clinical effectiveness of the QPS in assisting patient physician communication.

Promoting palliative care access to persons with cancer: A model for mapping statewide services.

127 Background: The CDC comprehensive cancer initiatives value comprehensive quality care within its mission and program development. Currently, over 75% of hospitals in the United States have palliative care services for cancer patients (CAPC 2011). In order to promote access to quality palliative care in the community outside the hospital, an evaluation is essential. The CDC model of comprehensive cancer care and prevention control structure is an appropriate mechanism to perform such an evaluation. From 2014-2015, the Massachusetts Comprehensive Cancer and Prevention Control Network Palliative Care Workgroup performed a survey to hospitals, home health agencies, hospices, long term care facilities, and community providers to determine palliative care services available to cancer patients across the state. Methods: Using the National Consensus Project for Quality Palliative Care Clinical Practice Guidelines, a robust palliative survey tool was created by the Massachusetts Comprehensive Cancer and Prevention Control Palliative Care Workgroup. It was individualized to each of the following settings - hospitals, home health organizations, hospices, skilled nursing facilities, and community health agencies. Follow-up telephonic key informant interviews regarding palliative care services were conducted within the various settings, service organizations, and insurers. Results: The results of qualitative and quantitative data will be concluded in August. Initial results reveal significant disparities in access to palliative care across by geography and setting of care. Hospices and hospitals had the most access to palliative care services. Long term care settings and community health settings had the least access. Conclusions: Data reveals disparities in palliative care access within Massachusetts by geography, race, and setting of cancer care. This data will serve as the basis of regional networks to promote better access to palliative care for cancer patients across all settings. It is hoped this evaluation process will serve as a model for other states to perform a similar evaluation.

Reporting of cancer-related fatigue in palliative care journals

Introduction: Cancer-related fatigue (CRF) is a highly prevalent symptom in patients with cancer. Palliative care clinical practice depends upon an evidence-based decisionmaking process. We performed a quantitative analysis of research publications in palliative Care journals for their reporting of CRF. Settings and Design: Systematic review of palliative cares journals. Materials and Methods: Twelve palliative care journals were searched for articles with ‘cancer’ in title and ‘fatigue’ in title/abstract of the articles published from 2006-2010. The reporting rates of all journals were compared. The selected articles were categorized into assessment and treatment, and subsequently grouped into original and review articles. The original articles were sub-grouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup in the original articles category was further classified according to study designs. Descriptive analysis using frequencies and percentiles was used. Results: The overall reporting rate among all journals was 1.04% (38/3634), and Am J Hosp Palliat Care (AJHPC) had highest reporting rate of 1.98% (9/454), followed by Palliat Med (PM) with 1.85% (10/538), and Indian J Palliative Care (IJPC) with 1.69% (1/59). Conclusions: The overall reporting rate for CRF articles in palliative care journals was very low and there were very few randomized clinical trials and systematic reviews found. The study findings indicate a lack of adequate evidence base for CRF.

CARES

Providing symptom-based care during the last days or hours of life in a hospital setting requires a complex set of skills and interactions. Often, nurses are unaware of medications they can request and nursing orders they can write within their scope of practice. This deficit in knowledge can often result in unnecessary patient and family suffering. The CARES tool, developed by this author as part of a doctor of nursing practice research project through Azusa Pacific University for the City of Hope National Medical Center, a 300-bed cancer research center in southern California, is an acronym organized educational tool that addresses the priority needs of comfort, airway, restlessness and delirium, emotional and spiritual support, and self-care. Prompts are provided for nurses on common symptom management needs of the dying based on 29 references cited in this article and the National Consensus Project for Palliative Care Clinical Practice Guidelines. The CARES acronym format was designed to help nurses stay focused and provide a method to inventory necessary tasks to address during the often chaotic and stressful last few days to hours of a patient’s life.

An International Initiative To Create a Collaborative for Pharmacovigilance in Hospice and Palliative Care Clinical Practice

Medication registration currently requires evidence of safety and efficacy from adequately powered phase 3 studies. Pharmacovigilance (phase 4 studies, postmarketing data, adverse drug reaction reporting) provide data on more widespread and longer term use. Historically, voluntary reporting systems for pharmacovigilance have had low reporting rates, relying on ad hoc reporting and retrospective chart reviews, or prospective registries have often been limited to specific drugs or clinical conditions. Furthermore, these data are often irrelevant in hospice and palliative care due to the timeliness of which such data become available and the unique characteristics of our population and prescribing: compounding comorbidities, progressive organ failure, accumulation of symptom-specific medications, tendency to attribute toxicity to disease progression, use of old, off-patent medications, and incorporation of evolving evidence. There is a need for prospective, systematic pharmacovigilance in hospice and palliative care. Here we describe an international, Web-based, 128-bit secure initiative to collect pharmacovigilance data documenting net clinical benefit and safety of common medications. The intention is for a diverse and large group of clinical units to record data prospectively on a small deidentified consecutive cohort of patients started on the medication of interest. A new medication would be studied every 3 months. Three key time points (different for each medication) will be assessed for each patient, collecting easily codefiable data at baseline, a point at which clinical benefit should be experienced, and a point at which short- to medium-term toxicities may occur. Toxicities can additionally be recorded at any time they occur. Data collection will take a maximum of 10 minutes per patient. The intention is to create an efficient, relevant system to improve hospice and palliative care with maximally generalizable results.

Reporting of "Quality of life": A systematic review and quantitative analysis of research publications in palliative care journals

Context:Palliative care clinical practice depends upon an evidence-based decision-making process which in turn is based upon current research evidence. One of the most important goals in clinical palliative care is to improve patients’ quality of life (QoL).Aim:This study aimed to perform a quantitative analysis of research publications in palliative care journals for reporting characteristics of articles on QoL.Settings and Design:This was a systematic review of palliative care journals.Materials and Methods:Twelve palliative care journals were searched for articles with “QoL” in the title of the articles published from 2006 to 2010. The reporting rates of all journals were compared. The selected articles were categorized into assessment and treatment, and subsequently grouped into original and review articles. The original articles were subgrouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup of original article category was further classified according to study designs.Statistical Analysis Used:Descriptive analysis using frequencies and percentiles was done using SPSS for Windows, version 11.5.Results:The overall reporting rate among all journals was 1.95% (71/3634), and Indian Journal of Palliative Care (IJPC) had the highest reporting rate of 5.08% (3/59), followed by Palliative Medicine (PM) with 3.71% (20/538), and Palliative and Supportive Care (PSC) with 3.64% (9/247) reporting.Conclusions:The overall reporting rate for QoL articles in palliative care journals was 1.95% and there were very few randomized clinical trials and systematic reviews found. The study findings indicate further high-quality research to establish an adequate evidence base for QoL.

Searching for a Simple Assessment Tool Capable of Estimating Quality of Life in Palliative Care Clinical Practice: Is a Feeling of Well-Being a Good Candidate Tool as a Single Item?

Searching for a Simple Assessment Tool Capable of Estimating Quality of Life in Palliative Care Clinical Practice: Is a Feeling of Well-Being a Good Candidate Tool as a Single Item?

Palliative care research: urgent need for investment

More so than for perhaps any other area of health care, the knowledge base supporting the basic elements of palliative care clinical practice is still lacking. Numerous reports have highlighted the critical need for research to advance the science of palliative care, but investments do not match this. A recent report on investment in palliative and end-of-life research in Canada revealed that for every $20 spent on cancer prevention services and basic research only $1 was spent on palliative care research (Canadian Cancer Research Alliance and Canadian Partnership Against Cancer, 2011); similar findings are reported for other countries.

Reporting of pediatric palliative care: A systematic review and quantitative analysis of research publications in palliative care journals

Context:Pediatric palliative care clinical practice depends upon an evidence-based decision-making process which in turn is based upon current research evidence.Aims:This study aimed to perform a quantitative analysis of research publications in palliative care journals for reporting characteristics of articles on pediatric palliative care.Settings and Design:This was a systematic review of palliative care journals.Materials and Methods:Twelve palliative care journals were searched for articles with “paediatric” or “children” in titles of the articles published from 2006 to 2010. The reporting rates of all journals were compared. The selected articles were categorized into practice, education, research, and administration, and subsequently grouped into original and review articles. The original articles were subgrouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup of original articles’ category was further classified according to study designs.Statistical Analysis Used:Descriptive analysis using frequencies and percentiles was done using SPSS for Windows, version 11.5.Results:The overall reporting rate among all journals was 2.66% (97/3634), and Journal of Hospice and Palliative Nursing (JHPN) had the highest reporting rate of 12.5% (1/8), followed by Journal of Social Work in End-of-Life and Palliative Care (JSWELPC) with a rate of 7.5% (5/66), and Journal of Palliative Care (JPC) with a rate of 5.33% (11/206).Conclusions:The overall reporting rate for pediatric palliative care articles in palliative care journals was very low and there were no randomized clinical trials and systematic reviews found. The study findings indicate a lack of adequate evidence base for pediatric palliative care.

The National Consensus Project for Quality Palliative Care Clinical Practice Guidelines Domain 8: Ethical and Legal Aspects of Care

In 2001, leaders with palliative care convened to discuss the standardization of palliative care and formed the National Consensus Project for Quality Palliative Care. In 2004, the National Consensus Project for Quality Palliative Care produced the first edition of Clinical Guidelines for Quality Palliative Care. The Guidelines were developed by leaders in the field who examined other national and international standards with the intent to promote consistent, accessible, comprehensive, optimal palliative care through the health care spectrum. Within the guidelines there are eight domains to the provision of palliative care. This article focuses on the last, but very significant Domain 8--Ethical and Legal Aspects of Care.

Addressing Life Limiting Illness in Elders

Background: Elder patients often experience chronic life limiting conditions, such as vascular diseases, malignancies, renal or liver failure, stroke, advanced heart or lung disease, neurodegenerative disorders, and dementia. The 1995 SUPPORT study demonstrated a pervasive lack of communication between patients and their health care providers about goals of end of life care, significant levels of inadequately treated pain in seriously ill and dying patients, and, most importantly, discrepancies between stated preferences of care and continued use of aggressive care. Purpose: To address this issue in elder patients, Massachusetts General Hospital developed The RN Residency: Transitioning to Geriatrics and Palliative Care, an innovative program funded by the Division of Nursing, Bureau of Health Professions, Health Resources and Services Administration. Methodology: The RN Residency program is a nine-month residency program. This program utilizes cohort learning to build skills and competencies to improve practice and initiate unit based quality improvement. The National Consensus Project for Quality Palliative Care's Clinical Practice Guidelines serve as the blueprint for end of life education, along with The End of Life Nursing Education Consortium Curriculum and other resources from the Center to Advance Palliative Care and Hospice and Palliative Care Nurses Association. The John A Hartford Foundation Evidence-based geriatric curriculum serves to structure education for the older adult patient. Findings: Evaluation is ongoing, including qualitative assessments and pre- and post-test of skills and attitudes toward seniors. Summary Concluding Statement: The RN Residency provides nurses knowledge and expertise through state of the science, evidence-based palliative care and geriatric education, thereby improving end of life care for elder patients.

A Framework for Generalizability in Palliative Care

Palliative medicine has only recently joined the ranks of evidence-based medical subspecialties. Palliative medicine is a rapidly evolving field, which is quickly moving to redress its historical paucity of high-quality research evidence. This burgeoning evidence base can help support the application of evidence-based principles in palliative and hospice clinical care and service delivery. New knowledge is generally taken into practice relatively slowly by established practitioners. At present, the translation of evidence into palliative and hospice care clinical practice lags behind emerging research evidence in palliative care at even greater rates for three critical reasons: 1) the application of research results to specific clinical subpopulations is complicated by the heterogeneity of palliative care study subpopulations and by the lack of a recognized schema for describing populations or services; 2) definitional issues in service provision are, at best, confusing; and 3) fundamental research concepts (e.g., external validity, effect size, generalizability, applicability) are difficult to apply meaningfully in palliative care. This article provides a suggested framework for classifying palliative care research subpopulations and the clinical subpopulations to which the research findings are being applied to improve the ability of clinicians, health planners, and funders to interpret and apply palliative care research in real-world settings. The framework has five domains: patients and caregivers; health professionals; service issues; health and social policy; and research.

Applying the National Quality Forum Preferred Practices for Palliative and Hospice Care: A Social Work Perspective

ABSTRACT The National Consensus Project's (NCP) Clinical Practice Guidelines for Quality Palliative Care, published in 2004, defined eight domains of care essential to palliative care clinical practice. The National Quality Forum's (NQF) 2006 document, A National Framework and Preferred Practices for Palliative and Hospice Care Quality: A Consensus Report, based on the NCP's Guidelines, identified 38 evidence-based preferred practices for palliative care. This article demonstrates how the Guidelines and Preferred Practices may be operationalized in practice, focusing specifically on Domain 4 of the Guidelines, “Social Aspects of Care.” Domain 4 incorporates many pertinent aspects of hospice and palliative care related to communication and care planning. In particular, emphasized is the inclusion of the patient and family in discussions about ongoing care and creation of care plans that respect the social community of patient and family.

Caring for Bereaved Family Caregivers: Analyzing the Context of Care

Deaths from cancer will continue to rise with an increasing and aging population. Family caregivers of patients with cancer will face loss, grief, and bereavement as a result. As mandated by cancer and palliative care clinical practice guidelines, support for family caregivers continues through the processes of grief and bereavement to facilitate a positive transition through loss. To provide evidence-based nursing with this population, an analysis of their context of care was undertaken. Key health policies, characteristics of the healthcare delivery system, and the results of research with bereaved palliative caregivers are described. A model of effectiveness, efficiency, and equity is used to examine the situation of bereaved caregivers and to suggest research questions to fill the gaps in what is known about their needs and experience. Bereaved caregivers are at high risk for many distressing symptoms, including depression and sleeplessness, related to a range of complex variables, such as age, gender, social support, resources, and their experiences during caregiving. Current systems of support have not been adequate to meet the needs of this population and very little is known about the caregivers' quality of life, well-being, and health outcomes or how best to provide compassionate and effective nursing care.

The National Agenda for Quality Palliative Care: Promoting the National Consensus Project's Domain of Physical Care and the National Quality Forum's Preferred Practices for Physical Aspects of Care

The National Consensus Project (NCP) 2004 Clinical Practice Guidelines for Quality Palliative Care defines eight domains of care essential for palliative care clinical practice. The National Quality Forum (NQF) 2006 document entitled A National Framework and Preferred Practices for Palliative and Hospice Care Quality: A Consensus Report is based on the NCP Guidelines. The NQF document identifies 38 evidence-based preferred practices for palliative care. This paper demonstrates how the Guidelines and Preferred Practices may be operationalized by pharmacotherapists to better treat symptoms of debilitating or chronic illnesses falling under Domain 2 of the Guidelines, “Physical Care.” Specifically, dementia and dyspnea are used as illustrative examples.

Communicating about patient sexuality and intimacy after cancer: mismatched expectations and unmet needs

To explore the ways that patients and health professionals communicate about intimate and sexual changes in cancer and palliative care settings. A qualitative study using a three-stage reflexive-inquiry approach, with semi-structured, participant interviews (n = 82); textual analysis of national and international cancer and palliative care clinical practice guidelines (n = 33); and participant feedback at 15 educational forums for cancer patients or health professionals. A large Australian public teaching hospital between 2002 and 2005. 50 patients diagnosed with cancer, and 32 health professionals who had worked in cancer and/or palliative care for a minimum of 12 months. Communication about intimacy and sexuality: patients' needs and experiences and health professionals' attitudes and experiences. There were mismatched expectations between patients and health professionals and unmet patient needs in communication about sexuality and intimacy. Most patients sought information, support and practical strategies about how to live with intimate and sexual changes after treatment for cancer, even if their cancer type did not affect fertility or sexual performance. In contrast, many health professionals assumed that patients shared their professional focus on combating the disease, irrespective of the emotional and physical costs to the patient. Health professionals overwhelmingly limited their understanding of patient sexuality to fertility, contraception, menopausal or erectile status. Many stereotypical assumptions were made about patient sexuality, based on age, sex, diagnosis, culture, and partnership status. There was a relationship between providing patient-centred communication about intimacy and sexuality and health professionals' understanding of their own attitudes and beliefs. Resources are needed to help health professionals engage in an exploration of their own definitions of intimacy and sexuality and understand how these affect interactions with patients with cancer.