Pain talk in hospice care: a conversation analysis.

BACKGROUND: A large number of the hospice patients have been reported to be with symptoms of pain. Thus, managing the patient's pain is one aspect of hospice care provision. The delivery of pain care services could be facilitated through effective communication. However, little has been done to explore the interactional details of the delivery of pain care services in palliative care. METHODS: Conversation analysis is a useful method to explore the interactional details of interaction by hospice care providers and terminally ill patients. Using the method of Conversation Analysis (CA), this study aims to demonstrate how the hospice care provider employs different types of interactional practices to address the patient's pain concerns. The data showed in this study are collected from the Alexander St website http://ctiv.alexanderstreet.com , an educational resource presenting a large collection of psycho-therapeutic videos. RESULTS: In this study, an illustrative analysis is demonstrated to show the potential of conversation analysis for research on pain talk in palliative care. It has been shown that conversation analysis could contribute to unfolding the interactional details regarding "pain talk" in hospice care settings. Specifically, conversation analysis could provide a detailed description and interpretation of the conversational practices, which are used to construct hospice care provider participation in delivering pain talk. In addition, conversation analysis could also demonstrate the interactional resources by which patients disclose their experiences of physical or spiritual pain to the hospice care provider and the way how the hospice care provider responds to the patient's troubles talk or feelings talk. CONCLUSIONS: This study identifies five types of interactional resources which are used to deal with the patient's pain concerns in hospice care setting. A conversation analytical study of pain talk in hospice care could provide a turn-by-turn description of how the hospice care provider communicates with the terminally ill patient in terms of the patient's pain concerns. The findings in this study could inform how the hospice care provider initiates, delivers and develops a pain talk with the terminally ill patient effectively.

Challenges and facilitators of hospice decision-making: a retrospective review of family caregivers of home hospice patients in a rural US-Mexico border region-a qualitative study.

OBJECTIVES: Hospice care (HC) is seen as a comprehensive approach, that enhances quality of end-of-life (EOL) care, for terminally ill patients. Despite its positive aspects, HC enrolment is disproportionate for rural patients, who are less likely to use HC in comparison to their urban counterparts. The purpose of this study was to explore decision-making experiences, related to utilisation of HC programmes from a retrospective perspective, with family caregivers (FCGs) in a rural US-Mexico border region. DESIGN: This qualitative study was conducted from May 2017 to January 2018 using semistructured face to face interviews with FCGs. Data were analysed using thematic analysis. SETTING: The HC programme was situated at a local home health agency, located in rural Southern California, USA. PARTICIPANTS: Twenty-eight informal FCGs of patients who were actively enrolled in the HC programme agreed to participate in the study. RESULTS: Conversation about HC as an option was initiated by home healthcare staff (39.3%), followed by physicians (32.1%). Emerging themes related to challenges in utilisation of HC and decision-making included: (1) communication barriers; (2) lack of knowledge/misperception about HC; (3) emotional difficulties, including fear of losing their patient, doubt and uncertainty about the decision, denial and (4) patients are not ready for HC. Facilitators included: (1) patient's known EOL wishes; (2) FCG-physician EOL communication; (3) the patient's deteriorating health and (4) home as the place for death. CONCLUSIONS: HC patients' FCGs in this rural region reported a lack of knowledge or misunderstanding of HC. It is recommended that healthcare providers need to actively engage family members in patient's EOL care planning. Optimal transition to an HC programme can be facilitated when FCGs are informed and have a clear understanding about patients' medical status along with information about HC.

Assessment of the effects of a multi-component, individualized physiotherapy program in patients receiving hospice services in the home.

BACKGROUND: The interest in physiotherapy programs for individuals in hospice is increasing. The aim of our study was to assess the impact of a multi-component, individualized physiotherapy program on the functional and emotional conditions and quality of life of patients receiving hospice services in the home. METHODS: The study included 60 patients (mean 66.3 years) receiving hospice services in the home. A model of a physiotherapy program was designed, including breathing, strengthening, transfer, gait, balance, functional, and ergonomic exercises, as well as an adaptation of the patient's living environment to functional needs. The tests were performed before and after the intervention. The study used the Activities of Daily Living (ADL) and Instrumental Activities of Daily Living (IADL) scales, the World Health Organization Quality of Life - Bref (WHOQOL-BREF), the Visual Analogue Scale (VAS) pain scale, the Tinetti POMA Scale, and the Geriatric Depression Scale (GDS). To enable comparison of our results worldwide, a set of International Classification of Functioning, Disability and Health (ICF) categories was used. RESULTS: The average functional level of the ADL (mean 2.9) and the IADL (mean 11.9), as well as the WHOQOL-BREF (mean 46.4) of the patients before the intervention were low, whereas the intensity of pain (VAS mean 5.8), the risk of falling (Tinetti mean 8.2), and depression (GDS mean 16.7) were recorded as high. After the completion of the intervention program, a significant improvement was found in the ADL (mean 4.0), IADL (mean 13.9), WHOQOL-BREF (mean 52.6), VAS (mean 5.1), risk of falling (Tinetti mean 12.3), and GDS (mean 15.7) scores. CONCLUSIONS: The physiotherapeutic intervention had a significant impact on improving the performance of ADL, as well as the emotional state and quality of life of patients receiving hospice services in the home. The results of our research provide evidence of the growing need for physiotherapy in individuals in hospice and for comprehensive assessment by means of ICF. Registered 02.12.2009 in the Research Registry ( https://www.researchregistry.com/why-register ) under the number research registry 5264.

Characteristics of Decedents in Home Settings Using Medicare Place of Hospice Service Codes.

Very little is known about the characteristics of the Medicare beneficiaries receiving hospice at home, defined using the Medicare Healthcare Common Procedure Coding System codes, as a traditional home, an assisted living facility, or a nursing home. A secondary analysis of 2015 Medicare data using regression to describe the characteristics of decedents (n = 675 782) in hospice residing in a traditional home, an assisted living facility, and a nursing home was completed. Results suggest that the proportion of Medicare decedents in hospice with more than 180 lifetime days in hospice was highest among those who resided in an assisted living facility (25.03%) compared with those who resided in a nursing home (18.87%) or in a traditional home (13.04%). Regression findings suggest that, compared with decedents in hospice without dementia who resided in a traditional home, decedents in hospice with a primary diagnosis of dementia were more likely to reside in an assisted living facility (adjusted odds ratio, 2.29; P < .0001) when controlling for other factors. In summary, decedents in hospice who resided in a traditional home have different characteristics than decedents who resided in an assisted living facility or a nursing home. Interdisciplinary providers should consider these differences when managing hospice interventions.

Hospice and Palliative Care: An Overview.

Palliative medicine is specialized medical care for people with serious illness. Serious illness is one with high risk of mortality that negatively affects quality of life or function or is burdensome in symptoms, treatments, or caregiver stress. Palliative care improves symptom management and addresses the needs of patients and families, resulting in improved patient and caregiver quality of life and reduced symptom burden and health care utilization. Hospice is palliative care for patients with a prognosis of 6 months or less and is appropriate when goals are to avoid hospitalization and maximize time at home for patients who are dying.

Compassion fatigue, watching patients suffering and emotional display rules among hospice professionals: a daily diary study.

BACKGROUND: Hospice workers are required to regularly use emotional regulation strategies in an attempt to encourage and sustain terminally ill patients and families. Daily emotional regulation in reaction to constantly watching suffering patients may be intensified among those hospice professionals who have high levels of compassion fatigue. The main object of this study was to examine the relationship between daily exposition to seeing patient suffering and daily emotional work, and to assess whether compassion fatigue (secondary traumatic stress and burnout) buffers this relationship. METHODS: We used a diary research design for collecting daily fluctuations in seeing patients suffering and emotional work display. Participants filled in a general survey and daily survey over a period of eight consecutive workdays. A total of 39 hospice professionals from two Italian hospices participated in the study. RESULTS: Multilevel analyses demonstrated that daily fluctuations in seeing patients suffering was positively related to daily emotional work display after controlling for daily death of patients. Moreover, considering previous levels of compassion fatigue, a buffering effect of high burnout on seeing patients suffering - daily emotional work display relationship was found. CONCLUSIONS: A central finding of our study is that fluctuations in daily witness of patients suffering are positively related to daily use of positive emotional regulations. Further, our results show that burnout buffers this relationship such that hospice professionals with high burnout use more emotional display in days where they recurrently witness patients suffering.

Hyperactive Terminal Delirium in Hospice Patients: A Retrospective Cohort Study.

Terminal delirium is a common occurrence in patients at the end of life, and its presence is widely accepted as a poor prognostic indicator. The hyperactive subtype is characterized by psychomotor agitation that is distressing to patients, caregivers, and providers. The purpose of this study was to determine whether physical, psychosocial, or spiritual data collected at hospice admission are associated with development of hyperactive terminal delirium. In this retrospective cohort study, 154 patients were assigned to one of two cohorts depending on whether or not they had signs of hyperactive terminal delirium. Hospice admission data from the Hospice Item Set, psychosocial assessment, and spiritual assessment were analyzed using descriptive statistics, inferential statistics, and logistic regression. Although there were no statistically significant relationships among the physical, psychosocial, and spiritual variables and hyperactive terminal delirium, there were some findings that are clinically significant for nurses caring for patients at the end of life. Specifically, this study highlights the importance of ongoing physical, psychosocial, and spiritual assessment throughout the end-of-life trajectory, as well as prompt management of symptoms.

Trends in Place of Death for Cardiovascular Mortality Related to Heart Failure in the United States From 2003 to 2017.

BACKGROUND: The location of death is an important component of end-of-life care. However, contemporary trends in the location of death for cardiovascular deaths related to heart failure (CV-HF) and comparison to cancer deaths have not been fully examined. METHODS: We analyzed data from the Centers for Disease Control and Prevention's Control Wide-Ranging Online Data for Epidemiologic Research database between 2003 and 2017 to identify location of death for CV-HF and cancer deaths. The proportions of deaths that occurred in a hospice facility, home, and medical facility were tested for trends using linear regression. Odds ratios were calculated to determine the odds of death occurring in a hospice facility or home (versus a medical facility) stratified by sex and race. RESULTS: We identified 2 940 920 CV-HF and 8 852 066 cancer deaths. Increases were noted in the proportion of CV-HF deaths in hospice facilities (0.2% to 8.2%; Ptrend<0.001) and at home (20.6% to 30.7%; Ptrend<0.001), whereas decreases were noted in the proportion of deaths in medical facilities (44.5% to 31.0%; Ptrend<0.001) and nursing homes (30.8% to 25.7%; Ptrend<0.001). The odds of dying in a hospice facility (odds ratio, 1.79 [1.75-1.82]) or at home (odds ratio, 1.55 [1.53-1.56]) versus a medical facility was higher for whites versus blacks. The rate of increase in proportion of deaths in hospice facilities was higher for cancer deaths (ß=1.05 [95% CI, 0.97-1.12]) than for CV-HF deaths (ß=0.61 [95% CI, 0.58-0.64]). CONCLUSIONS: The proportion of CV-HF deaths occurring in hospice facilities is increasing but remains low. Disparities are noted whereby whites are more likely to die in hospice facilities or at home versus medical facilities compared with blacks. More research is needed to determine end-of-life preferences for patients with HF and identify the basis for these differences in location of death.

An Interdisciplinary Framework for Palliative and Hospice Education and Practice.

Leading highly functional health care teams in all practice settings is sustained through the identification of a conceptual framework to guide education and practice. This article presents an interdisciplinary framework for palliative and hospice education and practice. The framework builds on theoretical caring to convey elements of relational, holistic and compassion; articulates interprofessional tenets for guiding values; and aligns with constructs for palliative and hospice best practices. The framework invites those at the bedside and in leadership to be intentional in attending to education and the necessary activities that address the day-to-day operations of palliative and hospice care, as well as, honoring all interdisciplinary collaboration that supports quality outcomes and inspires actions that transform.

Human relationships in patients' end-of-life: a qualitative study in a hospice ward.

Living in a hospice department is an intense experience for patients, caregivers, and healthcare professionals. End-of-life care aims to conduct vulnerable dying patients towards a painless and peaceful death. The importance of a strong staff-patient relationship and the perspective of pain and suffering from patients has already been studied. This study aimed to explore patients' inner needs living in hospice through a qualitative research approach. A descriptive qualitative study was conducted in the hospice department at ARNAS Civico in Palermo, Italy. From a qualitative research point of view, a significant sample of ten dying patients was interviewed. Data were collected until saturation by in-depth interview using a semi-structured interview guide, and Colaizzi's method was used. Five themes emerged: experiencing hospice, hospice staff, family role, coping with the disease, and death. Human relationships seem to represent a fundamental key in patients' end-of-life, especially in their family fondness. Predictably, terminally ill patients seem to fear pain and incoming death. Even though patients had everything they needed in the hospice, their main thoughts were always focused on human relationships. End-of-life medicine should improve the quality of time that each patient could spend with significant others to improve end-of-life care.

Has There Been a Shift in Use of Subacute Rehabilitation Instead of Hospice Referral Since Immunotherapy Has Become Available?

PURPOSE: Immunotherapy has rapidly become the mainstream treatment of multiple cancer types. Since the first drug approval in 2011, we have noted a decline in referrals from inpatient oncology to hospice and an increase in referrals to subacute rehabilitation (SAR) facilities, possibly with the aim of getting strong enough for immunotherapy and other promising drugs. This study explores outcomes after discharge to SAR, including rates of cancer-directed therapy after SAR, overall survival, and hospice use. METHODS: We performed an electronic chart review of patients discharged from our inpatient oncology units to SAR facilities from 2009 to 2017. Demographics, admission statistics, and post-discharge outcomes were gathered from discharge summaries and targeted chart searches. RESULTS: Three hundred fifty-eight patients were referred to SAR 413 times. One hundred seventy-four patients (49%) returned to the oncology clinic before readmission or death, and only 117 (33%) ever received additional cancer-directed treatment (chemotherapy, radiation, or immunotherapy). Among all discharges, 28% led to readmissions within 30 days. Seventy-four patients (21%) were deceased within 30 days, only 31% of whom were referred to hospice. Palliative care involvement resulted in more frequent do not resuscitate code status, documented goals of care discussions, and electronic advance directives. CONCLUSION: A growing number of oncology inpatients are being discharged to SAR, but two thirds do not receive additional cancer therapy at any point, including a substantial fraction who are readmitted or deceased within 1 month. These data can help guide decision making and hospital discharge planning that aligns with patients' goals of care. More clinical data are needed to predict who is most likely to benefit from SAR and proceed to further cancer therapy.

Live Discharge From Hospice: A Systematic Review.

Live discharges from hospice may occur because of patient choice or provider choice. However, when discharges occur before death, patients and families may feel abandoned and left to manage care needs previously provided by hospice. The purpose of this systematic review was to better understand the nature of live discharges, including frequency, patient characteristics, and hospice characteristics. Of 44 studies identified for review, 13 met inclusion criteria and were published between 2008 and 2018. Live discharge rates varied from 5% to 23%. Patients' prehospice characteristics varied widely based on diagnosis, comorbidities, gender, race, and ethnicity. Hospice characteristics indicated that the likelihood of a live discharge was increased for patients enrolled in for-profit hospices and in rural areas. Only 2 studies captured the patient/family perspective of the live discharge experience, finding that the loss of hospice support was fraught with difficulties. A need for further study of the live discharge experience and the practices of hospices with high live discharge rates was identified.

Implementing the Serious Illness Care Program in Primary Care.

Inadequate communication about serious illness care preferences affects patients, families, health care providers, and health care systems. Many patient and system barriers prevent comprehensive serious illness communication. The purpose of this evidence-based practice project was to provide a structure within a primary care clinic to facilitate conversations with seriously ill individuals about their care preferences that (a) was adaptable to clinic workflow, (b) improved providers' perception of the care conversation experience, (c) improved documentation of care preferences, and (d) provided a comfortable and helpful experience. The Johns Hopkins Nursing Evidence-Based Practice model and Serious Illness Care Program were used to address provider and system barriers to conversations about care preferences. Program interventions included training providers and staff; identifying patients at risk for high symptom burden and mortality; integrating system interventions; and evaluating outcomes. Providers completed training, after which a 5-week pilot practice change was conducted. Provider perceptions of conversations after implementation were positive. During the pilot, 3 serious illness care conversations were initiated with additional patients prepared for future conversations using an information sheet and introduction to the conversation.