Advancing the Science of Palliative Care: Contributions of the Palliative Care Research Cooperative Group.

The Palliative Care Research Cooperative Group (PCRC) formed to lead, catalyze, and empower a community of scientists to build an evidence base to ensure high-quality care and optimal well-being for persons with serious illness and their caregivers. The PCRC grew to 630 members representing 220 distinct sites. The PCRC awarded 44 pilot grant awards (total investment $1.4 million), resulting in $15.8 million in extramural grant funding, supported monthly webinars, an annual mentorship selective, "Clinical Trials Intensives," research consultation, and grant review. Among the 169 Clinical Trials Intensive participants, 74 subsequently achieved extramural grant award funding with direct costs of over $139 million. The PCRC supported the submission of extramural research applications and fostered community through annual meetings, special interest groups, newsletters, and its website. The PCRC filled an important void in serious illness science and set the stage for the next era of advancing serious illness research.

The Use of Technology to Support Precision Health in Nursing Science.

PURPOSE: This article outlines how current nursing research can utilize technology to advance symptom and self-management science for precision health and provides a roadmap for the development and use of technologies designed for this purpose. APPROACH: At the 2018 annual conference of the National Institute of Nursing Research (NINR) Research Centers, nursing and interdisciplinary scientists discussed the use of technology to support precision health in nursing research projects and programs of study. Key themes derived from the presentations and discussion were summarized to create a proposed roadmap for advancement of technologies to support health and well-being. CONCLUSIONS: Technology to support precision health must be centered on the user and designed to be desirable, feasible, and viable. The proposed roadmap is composed of five iterative steps for the development, testing, and implementation of technology-based/enhanced self-management interventions. These steps are (a) contextual inquiry, focused on the relationships among humans, and the tools and equipment used in day-to-day life; (b) value specification, translating end-user values into end-user requirements; (c) design, verifying that the technology/device can be created and developing the prototype(s); (d) operationalization, testing the intervention in a real-world setting; and (e) summative evaluation, collecting and analyzing viability metrics, including process data, to evaluate whether the technology and the intervention have the desired effect. CLINICAL RELEVANCE: Interventions using technology are increasingly popular in precision health. Use of a standard multistep process for the development and testing of technology is essential.

Better Together: The Making and Maturation of the Palliative Care Research Cooperative Group.

OBJECTIVE: To describe the growth and outcomes of the Palliative Care Research Cooperative Group (PCRC). BACKGROUND: Despite advances, significant gaps remain in the evidence base to inform care for people with serious illness. To generate this needed evidence and bolster research capacity, the Palliative Care Research Cooperative (PCRC) group was formed. METHODS: The PCRC supports investigators in the conduct of multisite clinical studies. After developing a governance structure and completing a proof of concept demonstration study, the PCRC expanded its infrastructure to include additional resource cores (Clinical Studies; Measurement; Data Informatics and Statistics; and Caregiver Studies). The PCRC also supports an Investigator Development Center as many palliative care investigators valued opportunities to advance their skills. Additional key aspects of PCRC resources include a Scientific Review Committee, a Publications Committee, and initiatives to purposefully engage investigators in a community of palliative care science. RESULTS: The PCRC has grown to over 300 members representing more than 130 distinct sites. To date, the PCRC has supported the submission of 51 research applications and has engaged in 27 studies. The PCRC supports investigator research development needs through webinars and clinical trials "intensives." To foster a sense of community, the PCRC has convened biannual meetings, developed special interest groups, and regularly communicates via a newsletter and its website. CONCLUSION: With a particular focus on facilitating conduct of rigorous multisite clinical studies, the PCRC fosters an engaged multidisciplinary research community, filling an important void in generating and disseminating evidence that informs the provision of high-quality care to people with serious illness.

Self-management priority setting and decision-making in adults with multimorbidity: a narrative review of literature.

OBJECTIVES: The purpose of this narrative review was to synthesize current research findings related to self-management, in order to better understand the processes of priority setting and decision-making among adults with multimorbidity. DESIGN: A narrative literature review was undertaken, synthesizing findings from published, peer-reviewed empirical studies that addressed priority setting and/or decision-making in self-management of multimorbidity. DATA SOURCES: A search of PubMed, PsychINFO, CINAHL and SocIndex databases was conducted from database inception through December 2013. References lists from selected empirical studies and systematic reviews were evaluated to identify any additional relevant articles. REVIEW METHODS: Full text of potentially eligible articles were reviewed and selected for inclusion if they described empirical studies that addressed priority setting or decision-making in self-management of multimorbidity among adults. Two independent reviewers read each selected article and extracted relevant data to an evidence table. Processes and factors of multimorbidity self-management were identified and sorted into categories of priority setting, decision-making, and facilitators/barriers. RESULTS: Thirteen articles were selected for inclusion; most were qualitative studies describing processes, facilitators, and barriers of multimorbidity self-management. The findings revealed that patients prioritize a dominant chronic illness and re-prioritize over time as conditions and treatments change; that multiple facilitators (e.g. support programs) and barriers (e.g. lack of financial resources) impact individuals' self-management priority setting and decision-making ability; as do individual beliefs, preferences, and attitudes (e.g., perceived personal control, preferences regarding treatment). CONCLUSIONS: Health care providers need to be cognizant that individuals with multimorbidity engage in day-to-day priority setting and decision-making among their multiple chronic illnesses and respective treatments. Researchers need to develop and test interventions that support day-to-day priority setting and decision-making and improve health outcomes for individuals with multimorbidity.

How hospice staff members prepare family caregivers for the patient's final days of life: an exploratory study.

BACKGROUND: There is widespread agreement that the families of hospice patients need to be prepared for the final days of life, yet current practices preparing families are not well described. Examining the gap between family needs and current practice will inform the development of effective preparatory interventions. AIM: The purpose of the study was to describe how hospice clinicians prepare family for the final days of life, including (1) the content of the preparatory information, (2) strategies and timing of preparation, and whether the preparation is tailored, and (3) who prepares families. DESIGN: Conventional content analysis guided this study. Individual interviews using semi-structured questions were conducted. SETTING/PARTICIPANTS: In all, 19 hospice clinicians who provided care in the home setting from two hospice agencies in the United States participated. RESULTS: Preparatory messages included information on signs of impending death, symptoms, implications of the symptoms, what to expect next, and instructions on what to do. Commonly used strategies included listening, engendering trust, repetition, collaboration with other disciplines, and demonstrations. Staff tailored content and delivery of messages on patient, family, and hospice factors. Preparation usually occurred over time. All hospice staff provided preparatory information, but there are some differences by discipline. CONCLUSIONS: Most content previous identified as necessary for preparedness is part of the current preparation. The knowledge of the current practice in preparing families can be used to develop systematic means of assessing the factors related to timing and tailoring, which may assist in developing preparatory messages that are effective and timely.

The Relationship of Patient Population and Nurses Certification Status on Nurses' Practices in Preparing Families for the End of Life.

While nurses usually prepare family for the patients' final days, little is known about how this is done. The purpose of this study was to describe nurses' beliefs and practices concerning family preparation for dying, focusing on strategies, tailoring, timing and content of preparation. Nurses' preparatory practices were compared by patient population (hospice or palliative care) and the nurses' certification status. A descriptive, comparative survey was conducted. All RN members of the Hospice and Palliative Nurses Association and who met the inclusion criteria (N=2706) were invited and 1434 (53.1%) participated. Nurses believe families can be prepared, and identified trust and repetition as important strategies. There are significant differences based on population regarding nurses' beliefs about preparation, strategies, tailoring, timing and content. Tailoring differed based on certification status. This information can be compared to what is known about family preparatory needs to develop preparatory interventions that are tailored to patient and family characteristics. Revisiting the similarities and differences in the practice of nurses in hospice and palliative care is important as the specialty continues to mature to assure that adequate education and proper criteria for certification are being provided for all hospice and palliative care nurses.

A systematic review of the prevalence of signs of impending death and symptoms in the last 2 weeks of life.

To optimally manage patient care, knowledge of the prevalence of signs of impending death and common symptoms in the last days is needed. Two reviewers independently conducted searches of PubMed, CINAHL, PsychINFO and the Web of Knowledge from January, 1996 to May, 2012. No limits to publication language or patient diagnosis were imposed. Peer reviewed studies of adults that included contemporaneous documentation of signs and symptoms were included. Articles were excluded if they assessed symptoms by proxy or did not provide information on prevalence. Reviewers independently extracted data. Twelve articles, representing 2416 patients, in multiple settings were analyzed. Of the 43 unique symptoms, those with the highest prevalence were: dyspnea (56.7%), pain (52.4%), respiratory secretions/death rattle (51.4%), and confusion (50.1%). Overall prevalence may be useful in anticipating symptoms in the final days and in preparing families for signs of impending death.

Readability of hospice materials to prepare families for caregiving at the time of death.

Many health care materials are not written at levels that can be understood by most lay people. In this descriptive study, we examined the readability of documents used by hospices to prepare families for caregiving at the time of death. We used two common formulae to examine the documents. The mean Flesch-Kincaid grade level was 8.95 (SD 1.80). The mean Simple Measure of Gobbledygook grade level was 11.06 (SD 1.36). When we used the Colors Label Ease for Adult Readers instrument, it became evident that medical terminology was the primary reason for the high-grade levels. Most documents (78%) included medical terms that were directly (46.2%) or indirectly (25.6%) explained in the text. Modification of hospice materials could improve families' comprehension of information important for optimal end-of-life care.

Effect of a disease-specific advance care planning intervention on end-of-life care.

OBJECTIVES: To compare patient preferences for end-of-life care with care received at the end of life. DESIGN: A randomized controlled trial was conducted with individuals with congestive heart failure or end-stage renal disease and their surrogates who were randomized to receive patient-centered advance care planning (PC-ACP) or usual care. SETTING: Two centers in Wisconsin with associated clinics and dialysis units. PARTICIPANTS: Of the 313 individuals and their surrogates who completed entry data, 110 died. INTERVENTION: During PC-ACP, the trained facilitator assessed individual and surrogate understanding of and experiences with the illness, provided information about disease-specific treatment options and their benefits and burden, assisted in documentation of treatment preferences, and assisted the surrogates in understanding the patient's preferences and the surrogate's role. MEASUREMENTS: Preferences were documented and compared with care received at the end of life according to surrogate interviews or medical charts. RESULTS: Patients (74%) frequently continued to make their own decisions about care to the end. The experimental group had fewer (1/62) cases in which patients' wishes about cardiopulmonary resuscitation were not met than in the control group (6/48) but not significantly so. Significantly more experimental patients withdrew from dialysis than controls. CONCLUSION: Patients and their surrogates were generally willing to discuss preferences with a trained facilitator. Most patients received the care they desired at end of life or altered their preferences to be in accord with the care they could receive. A larger sample with surrogate decision-makers is needed to detect significant differences.

Does sharing research data with participating hospices affect practice?

BACKGROUND: The research question guiding this study was, "Does receiving individualized feedback about the findings of a research study that the hospice participated in affect clinical practice?" Three issues were examined: (1) Did anyone at the hospice recall receiving the research results? (2) Were the findings shared with the hospice staff? and (3) Did the findings influence clinical practice in the hospice? METHODS: The sample was 170 hospices that participated in a previous study examining the written materials used by hospices to prepare families for death. Participating hospices were sent individualized feedback concerning the signs of impending death and types of information that were present in their hospice's materials. Approximately 1 year later, participating hospices received a follow-up survey. RESULTS: Sixty-five hospices (40.1%) completed the survey, 33 of these (50.8%) said they received the results of the previous research, 9 (13.8%) said they did not, and 23 (35.4%) said they did not know. All hospices that said that they received the data shared it with the others in the agency. Twenty-six (78.8% of those who recalled receiving the data) said that they made some change to how they prepare families for the patient's death and 11 said the changes were related to the research results they received. CONCLUSION: The findings of this study suggest that providing feedback to agencies or individuals who participate in some descriptive studies may be used to promote improvements in clinical care.

Effect of a disease-specific planning intervention on surrogate understanding of patient goals for future medical treatment.

OBJECTIVES: To determine whether a disease-specific planning process can improve surrogate understanding of goals of patients with life-limiting illnesses for future medical treatments. DESIGN: A multisite randomized controlled trial conducted between January 1, 2004 and July 31, 2007. SETTING: Six outpatient clinics of large community or university health systems in three Wisconsin cities. PARTICIPANTS: Competent, English-speaking adults aged 18 and older with chronic congestive heart failure or chronic renal disease and their surrogate decision-makers. INTERVENTION: Trained health professionals conducted a structured, patient-centered interview intended to promote informed decision-making and to result in the completion of a document clarifying the goals of the patient with regard to four disease-specific health outcome situations and the degree of decision-making latitude granted to the surrogate. MEASUREMENTS: Surrogate understanding of patient goals for care with regard to four expected, disease-specific outcomes situations and of the degree of surrogate latitude in decision-making. RESULTS: Three hundred thirteen patient-surrogate pairs completed the study. As measured according to kappa scores and in all four situations and in the degree of latitude, intervention group surrogates demonstrated a significantly higher degree of understanding of patient goals than control group surrogates. Intervention group kappa scores ranged from 0.61 to 0.78, whereas control group kappa scores ranged from 0.07 to 0.28. CONCLUSION: Surrogates in the intervention group had a significantly better understanding of patient goals and preferences than surrogates in the control group. This finding is the first step toward ensuring that patient goals for care are known and honored.

Can you hear me now? The experience of a deaf family member surrounding the death of loved ones.

INTRODUCTION: Individuals who are Deaf face challenges both similar and unique from those faced by hearing individuals when a family member is dying. This study was guided by the question, ''What are the challenges faced by a Deaf family member when a loved one is dying?'' METHODS: This qualitative study is guided by critical theory and an interpretive perspective. Robert, a college-educated older adult who has been Deaf from birth was interviewed in American Sign Language using a death history format. RESULTS: There are challenges for Deaf family members that affect communication with both the dying person and health care professionals. Patient-family communication issues included physical challenges and financial challenges. Lack of cultural competence concerning the Deaf community created challenges communicating with professionals. Decision-making was also a challenge. CONCLUSIONS: These findings provide a framework for future research concerning the needs of Deaf individuals facing the end of life and provide guidance for clinicians.

Challenges Facing Families at the End of Life in Three Settings.

This study examined the challenges faced by family members at the end of life in different care settings and how those challenges compare across settings. A total of 30 participants, who had a family member die in inpatient hospice, a skilled nursing facility or a community support program were interviewed. Semi-structured interviews were recorded and transcribed. Text was coded using qualitative thematic analysis. Themes were determined by consensus. Twelve challenges were identified across care sites. Two themes emerged in all three settings: bearing witness and the experience of loss. The study findings contribute to our knowledge of family perceptions of care in different settings and raises awareness of the need for further research describing the experiences at the end of life in different settings and the importance of creating and testing interventions for both setting specific needs and universal issues.

Materials to prepare hospice families for dying in the home.

Many changes occur in the final hours of life. Family members of those dying at home need to be prepared for these changes, both to understand what is happening and to provide care. The objectives of this study were to describe (1) the written materials used by hospices to prepare families for dying in the home setting and (2) the content of such materials. Questionnaires were sent to 400 randomly selected hospices, of which 170 responded (45.3%) sending their written materials. The most frequently used publications were Gone from My Sight (n = 118 or 69.4%), Final Gifts (n = 44 or 25.9%) and Caregiving (n = 14 or 8.2%). Half (56.5%) of the hospices used other publications and a majority (n = 87 or 51.2%) used multiple publications. Materials were given to the families by nurses (78.2%) or social workers (67.6%). More than 90% of the hospices had materials that addressed the following signs of impending death: decreased fluid intake, decreased food intake, breathing pattern changes, cold extremities, mottling, increased sleeping, changes at the moment of death, audible secretions, urinary output changes, disorientation, incontinence, overall decline and restlessness. Seven signs were addressed less than 30% of the time; pain (28.2%), dyspnea (19.4%), bed-bound state (18.2%), skin changes (18.2%), vital sign changes (17.1%), surge of energy (11.8%) and mandibular breathing (5.9%). Hospice staff should know the content of the materials offered by their agency so they can verbally address the gaps between the written materials and family needs.

Recruiting participants in end-of-life research.

A great deal of time, attention, and funding has been dedicated to research concerned with improving care at the end of life. However, sizes of samples for such research are reduced by recruitment problems unique to end-of-life studies, which limits their power and generalizability. In this article, experiences are shared and suggestions are offered to increase recruitment using 4 recent studies on end-of-life topics as examples. The issues in this article include those related to participants (patients or family members) and those related to the health care providers or systems. A researcher who is forewarned about higher-than-usual rates for lack of contact, refusals, and no-shows in end-of-life research can plan appropriately for the time and effort needed during the recruitment phase of the study.

Moving toward peace: an analysis of the concept of a good death.

One of the primary outcomes of end-of-life care should be the experience of a good death by the patient and the family. Yet there is no clear, shared understanding of what a good death is. This analysis of the concept of a good death has been guided by Rodgers' evolutionary method of concept analysis.(1) Forty-two articles were analyzed. There was the strong agreement that the concept of a good death was highly individual, changeable over time, and based on perspective and experience. Medical, nursing, and patient perspectives, as well as literature in sociology, include the following attributes of a good death, listed in order of frequency of appearance in the literature: being in control, being comfortable, sense of closure, affirmation/value of the dying person recognized, trust in care providers, recognition of impending death, beliefs and values honored, burden minimized, relationships optimized, appropriateness of death, leaving a legacy, and family care.

Treatment of terminal restlessness: a review of the evidence.

Terminal restlessness is an important issue in the management of symptoms at the end of life with between 25% and 88% of dying patients exhibiting this condition. (1-5) The purpose of this review was to examine the empiric evidence about the pharmacological treatment for terminal restlessness. All available literature, in all languages, from 1966-2002 including randomized trials, concurrent observations, retrospective chart reviews, single case studies, clinical practice guidelines, expert consensus, single expert opinion articles, and editorials were reviewed as "best available evidence." Of the 72 articles reviewed, 14 met the criteria and were chosen for analysis. Despite the majority of authors recommending neuroleptic medications as a first or second line pharmacological treatment of restlessness, a number of studies demonstrated the effectiveness of other medications such as benzodiazepines (notably midazolam and lorazepam), or phenothiazines, either alone or in combinations. There is insufficient evidence to suggest that a single medication or class of medications is appropriate for terminal restlessness. There is a clear need for additional trials of neuroleptics, benzodiazepines, barbiturates, and combination protocols to determine which protocols are the most effective and have the least side effects.