BACKGROUND: With the rapid growth in the number of fellowship programs in Hospice and Palliative Medicine (HPM), many are in the process of developing ways to demonstrate that fellows are attaining educational milestones. Reflection and self-assessment are key components of 2 Accreditation Council for Graduate Medical Education (ACGME) competencies, practice-based learning and improvement, and systems-based practice, which have both been historically challenging to learn and assess.
OBJECTIVE: This article describes results of a content analysis of narrative data collected from HPM fellows' self-assessments as they performed hospice home visits independently in a new clinical rotation.
DESIGN: This was a prospective qualitative study.
SETTINGS/PARTICIPANTS: Eight fellows completed 217 unsupervised hospice home visits from 2014 to 2016.
MEASUREMENTS: Fellows completed weekly self-assessment forms, which captured both clinical visit information and practice data elicited from responses to open-ended reflection prompts.
RESULTS: Analysis of 29 self-assessment forms generated 6 themes: patient- and family-centered care, self-efficacy, systems-based care, commitment to doing their best, catalyst for professional growth, and purpose and meaning in work. The fellows recognized numerous barriers distinct to providing care in homes. All fellows felt prepared to perform home visits throughout the rotation and after training.
CONCLUSIONS: Narrative data collected during the independent home visit rotation provided evidence that HPM fellows detected gaps in their performance, planned for practice improvements in subsequent visits, and valued working within an interprofessional team. Built-in opportunities for fellows to reflect during training are critical in meeting ACGME milestones, and are integral to their professional development.
This article investigates longitudinal variations in grief, self-rated health, and symptoms of anxiety and depression among family caregivers in palliative care. Data were taken from a randomized psycho-educational intervention trial and were collected at four time-points; at baseline, upon completion, 2 months later, and 6 months after the patient’s death. In total, 117 family caregivers completed all questionnaires. The participants’ grief was stable across the measurements, while anxiety, depression, and health varied significantly (p < 0.05). No significant differences were found between the intervention or control group. In conclusion, grief emerged as a constant phenomenon, distinct from symptoms of anxiety and depression.
Palliative care (PC) is an interdisciplinary team approach to address patients’ physical, psychosocial, and spiritual needs to improve quality of life among those who have faced a life-threatening illness. When PC services are provided in an outpatient setting, patients can stay in their homes and have all their physical, psychosocial, and spiritual needs met by a comprehensive health care team to ensure a good quality of life. Because outpatient PC clinics offer a viable option for delivering PC in communities but are not prevalent in the US health care system and were rarely described in the literature, this article has described the development and evaluation of an outpatient PC clinic that was dedicated to integrating spiritual care. Specifically, this article describes (1) the factors prompting development of the clinic and its growth, (2) how a chaplain was integrated into the PC provision process, and (3) the processes and outcomes of evaluation of this clinic.
BACKGROUND: Palliative care programs in the United States are becoming more integrated with oncology outpatient practices.
OBJECTIVES: This article offers a condensed review of available literature on the usefulness of palliative care in the oncology clinic setting and a case study to illustrate these ideas.
METHODS: Literature was reviewed related to the successes and failures of providing an embedded palliative care team in an oncology clinic and its role and effectiveness as part of a collaborative interprofessional team for patients with cancer.
FINDINGS: The incorporation of palliative care into outpatient oncology clinics presented a reduction in symptom burden, financial burden, and emergency department visits for symptom management. Palliative care also facilitates increased communication between patients and providers to ensure that care meets patients' wishes.
BACKGROUND: The work of specialized palliative care (SPC) teams is often challenged by substantial amounts of time spent driving to and from patients' homes and long distances between the patients and the hospitals.
OBJECTIVE: Video consultations may be a solution for real-time SPC at home. The aim of this study was to explore the use of video consultations, experienced by patients and their relatives, as part of SPC at home.
METHODS: This explorative and qualitative study included palliative care patients in different stages and relatives to use video consultations as a part of their SPC between October 2016 and March 2017. Data collection took place in the patients' homes and consisted of participant observations followed by semistructured interviews. Inclusion criteria consisted of patients with the need for SPC, aged more than 18 years, who agreed to participate, and relatives wanting to participate in the video consultations. Data were analyzed with Giorgi's descriptive phenomenological methodology.
RESULTS: A number of patients (n=11) and relatives (n=3) were included and, in total, 86 video consultations were conducted. Patients participating varied in time from 1 month to 6 months, and the number of video consultations per patient varied from 3 to 18. The use of video consultations led to a situation where patients, despite life-threatening illnesses and technical difficulties, took an active role. In addition, relatives were able to join on equal terms, which increased active involvement. The patients had different opinions on when to initiate the use of video consultations in SPC; it was experienced as optional at the initiating stage as well as the final stage of illness. If the video consultations included multiple participants from the SPC team, the use of video consultations could be difficult to complete without interruptions.
CONCLUSIONS: Video consultations in SPC for home-based patients are feasible and facilitate a strengthened involvement and communication between patients, relatives, and SPC team members.
AIMS: Estimating survival is challenging in the terminal phase of advanced heart failure. Patients, families, and health-care organizations would benefit from more reliable prognostic tools. The Palliative Performance Scale Version 2 (PPSv2) is a reliable and validated tool used to measure functional performance; higher scores indicate higher functionality. It has been widely used to estimate survival in patients with cancer but rarely used in patients with heart failure. The aim of this study was to identify prognostic cut-points of the PPSv2 for predicting survival among patients with heart failure receiving home hospice care.
METHODS AND RESULTS: This retrospective cohort study included 1114 adult patients with a primary diagnosis of heart failure from a not-for-profit hospice agency between January 2013 and May 2017. The primary outcome was survival time. A Cox proportional-hazards model and sensitivity analyses were used to examine the association between PPSv2 scores and survival time, controlling for demographic and clinical variables. Receiver operating characteristic curves were plotted to quantify the diagnostic performance of PPSv2 scores by survival time. Lower PPSv2 scores on admission to hospice were associated with decreased median (interquartile range, IQR) survival time [PPSv2 10 = 2 IQR: 1-5 days; PPSv2 20 = 3 IQR: 2-8 days] IQR: 55-207. The discrimination of the PPSv2 at baseline for predicting death was highest at 7 days [area under the curve (AUC) = 0.802], followed by an AUC of 0.774 at 14 days, an AUC of 0.736 at 30 days, and an AUC of 0.705 at 90 days.
CONCLUSIONS: The PPSv2 tool can be used by health-care providers for prognostication of hospice-enrolled patients with heart failure who are at high risk of near-term death. It has the greatest utility in patients who have the most functional impairment.
OBJECTIVES: The current evidence base regarding the effectiveness of home-based palliative care (HomePal) on outcomes of importance to multiple stakeholders remains limited. The purpose of this study was to compare end-of-life care in decedents who received HomePal with two cohorts that either received hospice only (HO) or did not receive HomePal or hospice (No HomePal-HO).
DESIGN: Retrospective cohorts from an ongoing study of care transition from hospital to home. Data were collected from 2011 to 2016.
SETTING: Kaiser Permanente Southern California.
PARTICIPANTS: Decedents 65 and older who received HomePal (n = 7177) after a hospitalization and two comparison cohorts (HO only = 25 102; No HomePal-HO = 22 472).
MEASUREMENTS: Utilization data were extracted from administrative, clinical, and claims databases, and death data were obtained from state and national indices. Days at home was calculated as days not spent in the hospital or in a skilled nursing facility (SNF).
RESULTS: Patients who received HomePal were enrolled for a median of 43 days and had comparable length of stay on hospice as patients who enrolled only in hospice (median days = 13 vs 12). Deaths at home were comparable between HomePal and HO (59% vs 60%) and were higher compared with No HomePal-HO (16%). For patients who survived at least 6 months after HomePal admission (n = 2289), the mean number of days at home in the last 6 months of life was 163 ± 30 vs 161 ± 30 (HO) vs 149 ± 40 (No HomePal-HO). Similar trends were also noted for the last 30 days of life, 25 ± 8 (HomePal, n = 5516), 24 ± 8 (HO), and 18 ± 11 (No HomePal-HO); HomePal patients had a significantly lower risk of hospitalizations (relative risk [RR] = .58-.87) and SNF stays (RR = .32-.77) compared with both HO and No HomePal-HO patients.
CONCLUSION: Earlier comprehensive palliative care in patients’ home in place of or preceding hospice is associated with fewer hospitalizations and SNF stays and more time at home in the final 6 months of life.
OBJECTIVE: Healthcare organizations are expanding community-based serious illness care programs to deliver care for homebound patients. Programs typically focus on home-based primary care or home-based palliative care, yet this population may require both services. We developed and evaluated a primary and palliative care program serving seriously ill older adults, called the Reaching Out to Enhance the Health of Adults in Their Communities and Homes (REACH) program. Our objective was to determine the impact of the REACH program on healthcare utilization and the patient care experience.
DESIGN: Case study using medical record review and telephone interviews.
SETTING: Home-based serious illness care program in central North Carolina.
PARTICIPANTS: Patients enrolled in the REACH program from August 2014 to March 2016 (n = 159).
INTERVENTION: Home-based primary and palliative care delivered by an interdisciplinary team for seriously ill older adults.
MEASUREMENTS: Structured medical record review including demographics, health and functional status, and acute hospitalization and emergency department (ED) visits in the 12 months preceding and following initiation of the REACH program. A convenience sample of participants completed telephone interviews that measured the quality-of-care experience and quality of communication.
RESULTS: REACH patients had a 43% reduction in hospital visits and a 25% reduction in ED visits. Participants in telephone interviews reported a high-quality care experience and very good quality of communication with REACH providers.
CONCLUSION: A care model that integrates home-based primary care and palliative care has the potential to reduce health service utilization and enhance the care experience for older patients with serious illness.
BACKGROUND: Many countries developed supportive measures for palliative home care, such as financial incentives or multidisciplinary palliative home care teams. For policy makers, it is important to evaluate the use of these national palliative home care supportive measures on a population level.
METHODS AND FINDINGS: Using routinely-collected data on all deaths in Belgium in 2012 (n = 107,847) we measured the use of four statutory supportive measures, specifically intended for patients who have obtained the legal palliative status, and three non-statutory supportive measures. Factors associated with uptake were analysed using multivariable logistic regression. Of all deaths of adult home-dwelling persons in Belgium (n = 87,007), 17.9 percent used at least one statutory supportive measure and 51.5 percent used at least one non-statutory supportive measure. In those who died of an illness indicative of palliative care needs 33.1 percent used at least one statutory supportive measure and 62.2 percent used at least one non-statutory supportive measure. Younger people and persons dying from cancer were more likely to use a statutory policy measure. Older people and persons dying from COPD were most likely to use a non-statutory policy measure. Women, non-single people, and those living in less urbanised areas were most likely to use any supportive measure.
CONCLUSIONS: Statutory supportive measures for palliative home care are underused, even in a subpopulation of persons with potential palliative care needs. Policy makers should stimulate an equitable uptake, and reducing the observed inequalities is an important focus for health care policy.
BACKGROUND: Conversations with seriously ill patients about their values and goals have been associated with reduced distress, a better quality of life, and goal-concordant care near the end of life. Yet, little is known about how such conversations are conducted.
OBJECTIVE: To characterize the content of serious illness conversations and identify opportunities for improvement.
DESIGN: Qualitative analysis of audio-recorded, serious illness conversations using an evidence-based guide and obtained through a cluster randomized controlled trial in an outpatient oncology setting. Setting/Measurements: Clinicians assigned to the intervention arm received training to use the "Serious Illness Conversation Guide" to have a serious illness conversation about values and goals with advanced cancer patients. Conversations were de-identified, transcribed verbatim, and independently coded by two researchers. Key themes were analyzed.
RESULTS: A total of 25 conversations conducted by 16 clinicians were evaluated. The median conversation duration was 14 minutes (range 4-37), with clinicians speaking half of the time. Thematic analyses demonstrated five key themes: (1) supportive dialogue between patients and clinicians; (2) patients' openness to discuss emotionally challenging topics; (3) patients' willingness to articulate preferences regarding life-sustaining treatments; (4) clinicians' difficulty in responding to emotional or ambiguous patient statements; and (5) challenges in discussing prognosis.
CONCLUSIONS: Data from this exploratory study suggest that seriously ill patients are open to discussing values and goals with their clinician. Yet, clinicians may struggle when disclosing a time-based prognosis and in responding to patients' emotions. Such skills should be a focus for additional training for clinicians caring for seriously ill patients.
Patients with Parkinson's disease and related disorders (PDRD) and their families have considerable unmet needs including non-motor symptom management, caregiver support, spiritual wellbeing, advance care planning, and end-of-life care. There is increasing interest in applying palliative care (PC) models to better meet these needs. While PC has been shown to improve care and quality of life (QOL) for people with cancer and heart failure, few studies have evaluated the role of PC for people with PDRD. Well-designed clinical trials are needed to optimize the PC approach for PDRD and to influence policy and implementation efforts. We initiated a randomized multicenter comparative effectiveness trial of team-based outpatient PC versus usual care for people with PDRD and their caregivers. The primary aims of this study are to determine the effects of PC on patient QOL and caregiver burden. Qualitative interviews will be utilized to gain additional insights into the impact of PC on participants, the outcomes that matter most to this population, and to find opportunities to refine future interventions and trials. As a novel application of PC, challenges involved in the design of this study include choosing appropriate inclusion criteria, standardizing the intervention, defining usual care, and choosing outcome measures suitable to our research questions. Challenges involved in implementation include participant recruitment, retention, and management of participant burden. We anticipate the results of this trial will have relevance for both clinical care and future clinical research trial design in evaluating models of PC for people with PDRD and other serious illnesses.
OBJECTIVES: Palliative care is still often involved late in the disease trajectory. Recently, some studies have explored the barriers to early integration of PC in the hospital setting. Because palliative care home care (PHC) is organised differently compared with PC in a hospital setting, the identification of barriers to the early integration of PHC is needed.
METHODS: Six focus groups were held with PHC teams in Flanders, Belgium. Discussions were transcribed verbatim and analysed using constant comparative analysis.
RESULTS: Our findings confirm many barriers found in previous studies, such as the lack of financial resources and the perception of PC as terminal care. Oncologists' lack of knowledge about the content and role of PC is also confirmed. Furthermore, professional caregivers working in the home context are lacking information on oncology therapies necessary to provide optimal PC. A barrier for the home context is the discontinuity of care, as a result of a lack of communicational structure and a lack of central coordination.
CONCLUSION: The results contribute to a better understanding of the factors hindering the provision of PHC alongside oncology care. For the home context, transmural discontinuity of care seems to be an important additional barrier.
End-of-life caregiving is a highly stressful experience often fraught with conflict and tension. However, little is known about the ways family conflict manifests for informal caregivers of home hospice patients (IHCs). Framed by relational dialectics theory, the purpose of this study was to provide nurses and other health care professionals with an empirical understanding of how IHCs experience family conflict and tensions associated with caregiving. A second aim was to determine what strategies IHCs use to manage these family conflicts. Data used in this qualitative secondary analysis were originally collected as part of a randomized clinical trial of an IHC support intervention. Based on thematic analysis of data from 25 IHCs who reported family conflict, a conceptual model of caregiver resilience was developed from the themes and categories that emerged during the coding stage. Autonomy was identified as a central tension. IHCs used several strategies to address family conflict including communication, formal support, and emotional self-care.
BACKGROUND: Access to community-based specialist palliative care teams has been shown to improve patients' quality of life; however, the impact on health system expenditures is unclear. This study aimed to determine whether exposure to these teams reduces health system costs compared with usual care.
METHODS: We conducted a retrospective matched cohort study in Ontario, Canada, using linked administrative data. Decedents treated by 1 of 11 community-based specialist palliative care teams in 2009/10 and 2010/11 (the exposed group) were propensity score matched (comorbidity, extent of home care, etc.) 1 to 1 to similar decedents in usual care (the unexposed group). The teams are comprised of a core group of specialized physicians, nurses and other providers; their role is to manage symptoms around the clock, provide education and coordinate care. Our primary outcome was the overall difference in health system costs (among 5 health care sectors) between all matched pairs of exposed versus unexposed patients in the last 30 days of life.
RESULTS: The total cohort of decedents included 3109 matched pairs. Among matched pairs, the mean health system cost difference was $512 (95% confidence interval [CI] -$641 to -$383) lower in the last 30 days among exposed than among unexposed patients. In the last 30 days, the mean home care costs of the exposed group were $189 higher (95% CI -$151 to $227) than those of the unexposed group, but their mean hospital costs were $733 lower (95% CI -$950 to -$516).
INTERPRETATION: Our study suggests that health system costs are lower for patients who have access to community-based specialist teams than for those who receive usual care alone, largely because of decreased hospital costs. Ensuring access to in-home palliative care support, as provided by these teams, is an efficacious strategy for reducing health care expenditures at the end of life.
What is known about the topic? A novel program was implemented to enhance the care provided by paramedics to patients with palliative goals of care. What did this study ask? This study asked about patient experience with the program and the comfort and confidence of paramedics to deliver this care. What did this study find? Patients praised the compassion of paramedics and staying home, and paramedics strongly agreed palliative care should be in their practice. Why does this study matter to clinicians? Knowledge of this program will support similar initiatives and increase access to care and death outside of the hospital setting.
OPINION STATEMENT: Multiple randomized controlled trials have underscored the importance of timely referral to palliative care for patients with advanced cancer. Outpatient palliative care can facilitate timely referral and is increasingly available in many cancer centers. The key question is which model of outpatient palliative care is optimal. There are currently many variations for how palliative care is delivered in the outpatient setting, including (1) Interdisciplinary Specialist Palliative Care in Stand-Alone Clinics, (2) Physician-Only Specialist Palliative Care in Stand-Alone Clinics, (3) Nurse-Led Specialist Palliative Care in Stand-Alone Clinics, (4) Nurse-Led Specialist Palliative Care Telephone-Based Interventions, (5) Embedded Specialist Palliative Care with Variable Team Makeup, and (6) Advanced Practice Providers-Based Enhanced Primary Palliative Care. It is important to make a clear distinction among these delivery models of outpatient palliative care because they have different structures, processes, and outcomes, along with unique strengths and limitations. In this review article, we will provide a critical appraisal of the literature on studies investigating these models. At this time, interdisciplinary specialist palliative care in stand-alone clinics remains the gold standard for ambulatory palliative care because this approach has the greatest impact on multiple patient and caregiver outcomes. Although the other models may require fewer resources, they may not be able to provide the same level of comprehensive palliative care as an interdisciplinary team. Further research is needed to evaluate the optimal model of palliative care delivery in different settings.
PURPOSE: To compare symptomatic treatment at inpatient palliative care unit and at home in terms of: pain intensity; negative impact of pain on functioning in different areas of life; and beliefs about pain (cognitive and emotional aspects according to Leventhal's theory).
PATIENTS: The sample consisted of 74 cancer patients qualified for palliative care at an inpatient unit (N = 53) and at home (N = 21).
METHODS: Brief Pain Inventory--Short Form (measurement of pain intensity and pain interference with daily activities), Karnofsky Scale (performance status), Illness Perception Questionnaire for cognitive and emotional representations and beliefs about pain, and Hospital Anxiety and Depression Scale.
RESULTS: Patients treated at inpatient unit and patients treated at home did not differ in terms of pain intensity, depression, and anxiety. The only significant differences between groups were the beliefs about pain. Patients with cancer in home care were more convinced of pain treatment effectiveness but expressed higher level of distress related to pain. Patients convinced that pain can be treated more effectively were younger, the pain they experienced was less severe, and they were treated at home.
CONCLUSIONS: Effectiveness of symptomatic treatment is comparable in patients with cancer at inpatient unit and at home. Treatment at home is associated with stronger patient convictions that pain can be effectively treated and higher level of distress. In future studies, the source of higher distress intensity in patients treated at home may be further explored.
Background: Home-based palliative care is an essential resource for many communities. We conducted a qualitative study to explore perceptions of a home-based palliative care programme in Kerala, India, from the perspective of patients, their care-givers and the doctors, nurses and volunteers running the intervention.
Methods: A descriptive qualitative study was carried out. One focus group discussion (FGD) was conducted with patients (n = 8) and two with male and female volunteers (n = 12); and interviews were conducted with doctors (n = 3), nurses (n = 3) and care-givers (n = 14). FGDs and interviews were conducted in Malayalam, audio-recorded, transcribed verbatim and translated into English. Transcripts were coded and analysed using manual content analysis.
Results: Doctors, nurses and volunteers have interdependent roles in providing palliative care to patients, including mentorship, training, patient care and advocating for patient needs. Volunteers also considered themselves to be mediators between families and the programme. Care-givers were mainly female and were caring for relatives. They have physically demanding, psychologically stressful and socially restrictive experiences of care-giving. They felt that the programme facilitated their role as care-givers by giving them training and support. Patients with long standing illnesses felt that the programme enabled them to become more independent and self-reliant. The local community supports the programme through economic contributions and offering practical assistance to patients.
Conclusion: The salient features of this programme include the provision of regular holistic care through a team of doctors, nurses and patients. The programme was perceived to have improved the lives of patients and their care-givers. The involvement of volunteers from the local community was perceived as a strength of the programme, whilst simultaneously being a challenge.
Health care professionals use teach-back to foster adherence to treatment recommendations and to improve safety and quality of care. This improvement project, conducted in one division of a home care agency, used a pretest-posttest design with an interprofessional group of hospice home care clinicians to incorporate teach-back into home visits to evaluate if the use of teach-back enhanced caregiver and patient-provider communication, improved caregivers' confidence in caring for hospice home care patients, and decreased hospitalizations. After the intervention, the teach-back group had zero hospitalizations compared with 2 for the non–teach-back group (0% and 1.97%, respectively), and patient-caregiver “confidence” increased from 58% to 81%, pre to post intervention. In conclusion, teach-back is a cost-effective teaching methodology that can be implemented by any discipline to improve patient-provider communication and patient outcomes.
Objective: The study examines psychophysical distress of health-care professionals providing home-based palliative care. The aim is to investigate potential correlations between dimensions of burnout and different coping strategies.
Methods: The present study is an observational cross-sectional investigation. The study involved all the home palliative care teams of an Italian nonprofit organization. Of a total of 275 practitioners working for the organization, 207 (75%) decided to participate in the study and complete questionnaires. Questionnaires employed were Maslach Burnout Inventory, General Health Questionnaire 12, Psychophysiological Questionnaire of CBA 2.0, and Coping Orientation to Problems Experienced. Professionals were physicians (50%), nurses (36%), and psychologists (14%). There were no exclusion criteria. Data were processed by SPSS 23 and analyses employed were Spearman , Mann-Whitney U test, and 1-way analysis of variance on ranks.
Results: Among participants, a low number of professionals were emotionally exhausted (11%) or not fulfilled at work (20%), whereas most of them complained of depersonalization symptoms (67%). Emotional exhaustion and depersonalization were found to be associated with avoidance coping strategies, whereas problem-solving and positive attitude were negatively associated with emotional exhaustion and positively with personal accomplishment. Moreover, using avoidance strategies was related to a worse psychological and physical condition.
Conclusions: Findings suggest the need to provide professionals training programs about coping and communication skills tailored to fit the professionals' needs according to their work experience in palliative care and aimed at improving the approach to patients and relatives.