Meaning and Practice of Palliative Care for Hospitalized Older Adults with Life Limiting Illnesses

Objective. To illustrate distinctions and intersections of palliative care (PC) and end-of-life (EOL) services through examples from case-centered data of older adults cared for during a four-year ethnographic study of an acute care hospital palliative care consultation service. Methods. Qualitative narrative and thematic analysis. Results. Description of four practice paradigms (EOL transitions, prognostic uncertainty, discharge planning, and patient/family values and preferences) and identification of the underlying structure and communication patterns of PC consultation services common to them. Conclusions. Consistent with reports by other researchers, study data support the need to move beyond equating PC with hospice or EOL care and the notion that EOL is a well-demarcated period of time before death. If professional health care providers assume that PC services are limited to assisting with and helping patients and families prepare for dying, they miss opportunities to provide care considered important to older individuals confronting life-limiting illnesses

Impact of opioid-free analgesia on pain severity and patient satisfaction after discharge from surgery: multispecialty, prospective cohort study in 25 countries

Background: Balancing opioid stewardship and the need for adequate analgesia following discharge after surgery is challenging. This study aimed to compare the outcomes for patients discharged with opioid versus opioid-free analgesia after common surgical procedures.Methods: This international, multicentre, prospective cohort study collected data from patients undergoing common acute and elective general surgical, urological, gynaecological, and orthopaedic procedures. The primary outcomes were patient-reported time in severe pain measured on a numerical analogue scale from 0 to 100% and patient-reported satisfaction with pain relief during the first week following discharge. Data were collected by in-hospital chart review and patient telephone interview 1 week after discharge.Results: The study recruited 4273 patients from 144 centres in 25 countries; 1311 patients (30.7%) were prescribed opioid analgesia at discharge. Patients reported being in severe pain for 10 (i.q.r. 1-30)% of the first week after discharge and rated satisfaction with analgesia as 90 (i.q.r. 80-100) of 100. After adjustment for confounders, opioid analgesia on discharge was independently associated with increased pain severity (risk ratio 1.52, 95% c.i. 1.31 to 1.76; P < 0.001) and re-presentation to healthcare providers owing to side-effects of medication (OR 2.38, 95% c.i. 1.36 to 4.17; P = 0.004), but not with satisfaction with analgesia (beta coefficient 0.92, 95% c.i. -1.52 to 3.36; P = 0.468) compared with opioid-free analgesia. Although opioid prescribing varied greatly between high-income and low- and middle-income countries, patient-reported outcomes did not.Conclusion: Opioid analgesia prescription on surgical discharge is associated with a higher risk of re-presentation owing to side-effects of medication and increased patient-reported pain, but not with changes in patient-reported satisfaction. Opioid-free discharge analgesia should be adopted routinely

A multi-country test of brief reappraisal interventions on emotions during the COVID-19 pandemic.

The COVID-19 pandemic has increased negative emotions and decreased positive emotions globally. Left unchecked, these emotional changes might have a wide array of adverse impacts. To reduce negative emotions and increase positive emotions, we tested the effectiveness of reappraisal, an emotion-regulation strategy that modifies how one thinks about a situation. Participants from 87 countries and regions (n = 21,644) were randomly assigned to one of two brief reappraisal interventions (reconstrual or repurposing) or one of two control conditions (active or passive). Results revealed that both reappraisal interventions (vesus both control conditions) consistently reduced negative emotions and increased positive emotions across different measures. Reconstrual and repurposing interventions had similar effects. Importantly, planned exploratory analyses indicated that reappraisal interventions did not reduce intentions to practice preventive health behaviours. The findings demonstrate the viability of creating scalable, low-cost interventions for use around the world

Care Preferences of Individuals Living with Advanced Cardiac and Respiratory Illness

Thesis (Ph.D.)--University of Rochester. School of Nursing. Dept. of Health Practice Research, 2011.The purpose of this study was to describe the care preferences of individuals living with advanced cardiac and respiratory illnesses about their current and future health, understanding about options for care at the end of life, and expectations from health care providers. Much of what is known about patients’ care preferences at the end of life is based on studies of patients with cancer, often in hospice settings. Less is known about the care preferences of patients with end-stage cardiac and respiratory illnesses as they near end of life. Using a qualitative descriptive design, two in-depth interviews were conducted with 20 participants enrolled in a community home care agency. Criterion-based sampling was used to recruit patients with NYS class III and IV heart failure and oxygen dependant chronic obstructive pulmonary disease. Interviews were audio-taped, transcribed verbatim and entered into Atlas Ti 6.0 for data management. Participants described living with their advanced illness as being a trade-off. In order to function and live with their disabling shortness of breath, they had to adopt a complex care regimen and accept the use of adaptive equipment. Their understanding of illness, or lack thereof, impacted how participants managed their health, including reporting symptoms and seeking treatment. All participants expected their doctor would tell them if their illness became life-threatening, which all thought was in the future. Earlier incorporation of palliative care may improve symptom management and future care planning among this population. Research identifying patient preferences and expectations for care holds promise in facilitating better care for persons with advanced illnesses as they near the end of life

Parents’ Experiences of Feeding, Swallowing, and Nutrition in Children Receiving Palliative Care

Thesis (Ph.D.)--University of Rochester. School of Nursing. Dept. of Health Practice Research, 2020.Objectives:  Describe the experience of parents providing nutrition to children with chronic life-threatening conditions receiving palliative care.  Characterize strategies employed by parents in coping with distress when they are unable to, or struggle to, feed their child. Background: Very little is known about how parents experience nutrition concerns amidst the stress and uncertainty of a child’s chronic life-threatening condition. Description: The purpose of this study was to explore and characterize parents’ experiences with, and responses to, providing nutrition when oral feeding was difficult or impossible for their child. Method(s): A qualitative descriptive design was used. There were 22 children, 19 mothers, and 3 fathers. The children ranged in age from 11 days to 5 years (mean 18 months). The children’s diagnoses included neurological conditions (11), congenital heart malformations (6), mitochondrial disorders (2), prematurity (9), and cancer (3). Race/Ethnicity: White 82% (36), African American 9% (4), Other 9% (4). Inclusion criteria for parents: English-speaking and having a child with nutrition difficulty receiving palliative care (PC). Recruitment occurred through pediatric PC services at a university hospital and home-care agency. Data from parents: interviews, field observations, and distress levels. Data from children: medical record abstraction. Distress levels were used to describe the parents. Interviews were transcribed verbatim, entered into Atlas.ti for data management, and were in analyzed using open and process coding. Within case analysis was used to find unique qualities in cases while across case analysis identified commonalities amongst the cases. Result(s): There were 3 key findings: 1. Guilt and grief are prominent for parents with feelings of failure as a parent and high levels of distress around the altered ability to provide nutrition to their child. 2. Parents cope by normalizing their experiences, taking it day-by-day, maintaining optimism, and modifying their role to meet the needs of the child. 3. The child’s projected illness trajectory affects the parents’ experiences with feeding. Conclusions: Having a child with a chronic life-threatening condition impacting nutrition is fraught with grief and distress. Parents expressed a need for support in coping with the distress associated with being unable to, or struggling to, feed their child

A Grounded Theory of Advance Directives and Guardianship Planning by People with HIV and AIDS

Thesis (Ph.D.)--University of Rochester. School of Nursing. Dept. of Nursing, 2008.Purpose To develop a grounded theory of how people with HIV and AIDS make plans for future health care. Background Although many people believe HIV/AIDS to be a chronic illness, most people with HIV/AIDS have not executed advance directives (ADs). ADs include living wills, health care proxies, and do-not-resuscitate orders. More people have considered ADs than have actually documented their wishes. Previous theory generation about how people with HIV/AIDS make AD decisions was limited to people who had already received an educational intervention to increase advance care planning. Methods In this qualitative study, HIV+ people 18 years or older with or without AIDS were sampled theoretically from among community-dwelling adults in western New York State. Verbatim transcriptions of audiotape-recorded in-depth individual interviews were analyzed using a grounded theory approach and the constant comparative method. Results A grounded theory of Advance Directives and Guardianship Planning by People with HIV and AIDS was constructed. A number of conditions affected an HIV+ person’s likelihood of making plans for the future: having already completed pre-existing plans, trusting a person to name as health care proxy, experiencing future health care planning for family members or friends, accurate understanding about ADs, focusing on a future time versus the day-to-day, spiritual beliefs, and input from health care providers. Additionally, for these participants, having dependent children, being a single parent, and their children’s wishes about guardians also significantly influenced future planning. Unless all or nearly all these conditions favored the ability to make plans, individuals were unlikely to be able to plan for their future health care or care of their children. Conclusions and Implications Past research has focused primarily on education to increase AD decision making. Little published research has described the impact that having minor children has on these decisions. Clinicians who work with people with HIV/AIDS are encouraged to explore these factors with patients who struggle with making future plans. Some barriers (e.g., planning for children before focusing on self) may lead more easily to intervention by clinicians than others (e.g., only focusing on one day at a time and lack of trusted loved ones)

Patients’ and Family Members’ Perceptions of Palliative Care in Late-Stage Heart Failure Care

Thesis (Ph.D.)--University of Rochester. School of Nursing. Dept. of Nursing, 2012.In an effort to improve late-stage heart failure (HF) care experts in palliative care (PC) and HF care have recommended collaboration between the two disciplines. However, little is known about the perspectives of those persons with HF and their family members (FMs) who have been referred to PC. The purpose of this qualitative descriptive study was to describe their experiences with and perceptions of PC consultations. Forty interviews were conducted with 24 persons with HF and 16 FMs. Interviews were recorded, transcribed, and analyzed using content analysis. Most participants felt ill-prepared for the PC consult as they reported being unaware of the availability of PC services or that a referral to PC had been made. For those who reported discussing the referral, the stage was set for PC. However, it was often set for PC as hospice care and participants’ perceptions of the “rules” of hospice rendered it inappropriate for them. When there was a discrepancy between the participants’ understanding of patient prognosis and their understanding of the clinicians’ prognosis, participants pursued a treatment plan that reflected their own prognosis. In general, participants felt PC’s involvement improved their hospital experience. The team’s communication style and holistic focus distinguished them from other hospital based services. Participants described a primarily supportive role for PC in HF care. Findings suggest that research-based collaborative models of care would improve the care of persons with HF and the people who love them. A deeper understanding of their perspectives is a step in that direction

Effectiveness and cost-effectiveness of a digital health intervention to support patients with colorectal cancer prepare for and recover from surgery: study protocol of the RecoverEsupport randomised controlled trial

Introduction Surgery is the most common treatment for colorectal cancer (CRC) and can cause relative long average length of stay (LOS) and high risks of unplanned readmissions and complications. Enhanced Recovery After Surgery (ERAS) pathways can reduce the LOS and postsurgical complications. Digital health interventions provide a flexible and low-cost way of supporting patients to achieve this. This protocol describes a trial aiming to evaluate the effectiveness and cost-effectiveness of the RecoverEsupport digital health intervention in decreasing the hospital LOS in patients undergoing CRC surgery.Methods and analysis The two-arm randomised controlled trial will assess the effectiveness and cost-effectiveness of the RecoverEsupport digital health intervention compared with usual care (control) in patients with CRC. The intervention consists of a website and a series of automatic prompts and alerts to support patients to adhere to the patient-led ERAS recommendations. The primary trial outcome is the length of hospital stay. Secondary outcomes include days alive and out of hospital; emergency department presentations; quality of life; patient knowledge and behaviours related to the ERAS recommendations; health service utilisation; and intervention acceptability and use.Ethics and dissemination The trial has been approved by the Hunter New England Research Ethics Committee (2019/ETH00869) and the University of Newcastle Ethics Committee (H-2015-0364). Trial findings will be disseminated via peer-reviewed publications and conference presentations. If the intervention is effective, the research team will facilitate its adoption within the Local Health District for widespread adaptation and implementation.Trial registration number ACTRN12621001533886