Clinical Parameters Associated With Pressure Ulcer Healing in Patients With Advanced Illness

ContextPressure ulcers are the most prevalent wounds affecting patients with advanced illness. Although complete wound healing is the most desired outcome, it remains unlikely in the setting of patients with limited life expectancy. Realistic goal setting may be enabled using objective clinical parameters.ObjectivesTo identify clinical parameters associated with complete healing of Stage II pressure ulcers.MethodsUnivariable and multivariable competing risk analyses were used to assess the association of complete healing with the following six clinical parameters, namely gender, age, total number of pressure ulcers, total number of other wounds, number of failing organ systems, and Palliative Performance Scale (PPS) scores.ResultsA total of 147 patients with 245 Stage II pressure ulcers were followed until death; 9.4% of Stage II pressure ulcers achieved complete healing. Univariable analyses showed hazard ratios (HRs) for complete healing in favor of higher levels of PPS scores (HR 1.82–5.99, P < 0.001) and age younger than 80 years (HR 3.28, P = 0.031). Multivariable analyses showed HRs for complete healing in favor of higher levels of PPS scores (HR 1.49–3.34, P = 0.003).ConclusionHigher levels of PPS scores are associated with complete healing of Stage II pressure ulcers in patients with advanced illness.     

The development of an Integrated Care Pathway for all patients with advanced life-limiting illness - the Supportive Care Pathway

AIM: To describe the development and implementation of an Integrated Care Pathway for all patients with advanced life-limiting illness who have been admitted to hospital. BACKGROUND: This pathway, called the Supportive Care Pathway, has been developed not only in response to the national drivers to improve end of life care, but also in recognition of local survey data which demonstrated the need for strategies to support the provision of palliative care. The pathway is aimed primarily at generalist staff who may have a significant number of patients with palliative care needs on their wards, though not necessarily yet in the last days of life. METHOD: The pathway, which is being piloted on three elderly care wards in the West Midlands, has been developed in line with accepted Integrated Care Pathway methodology and is being evaluated using the Integrated Care Pathways Assessment Tool. RESULTS: The pathway has been well received by staff using it and early evaluation of its effect in improving documentation of care is encouraging. CONCLUSIONS: Unacceptable variations in care for those nearing the end of life is recognized. It is believed that the use of the Supportive Care Pathway may help to reduce that variation by identifying and supporting patients thought to be in the last year of their life.     

Identifying Older Adults With Serious Illness: Transitioning From ICD-9 to ICD-10

ContextIdentifying the seriously ill population is integral to improving the value of health care. Efforts to identify this population using existing data are anchored to a list of severe medical conditions (SMCs) using diagnostic codes. Published approaches have used International Classification of Diseases, Ninth Revision (ICD-9) codes, which has since been replaced by ICD-10.ObjectivesWe translated SMCs from ICD-9 to ICD-10 using a refined code list. We aimed to test the hypothesis that people identified by ICD-9 or ICD-10 codes would have similar Medicare costs, health care utilization, and mortality.MethodsUsing data from the National Health and Aging Trends Study linked to Medicare claims, we compared samples from periods using ICD-9 (2014) and ICD-10 (2016). We included participants with six-month fee-for-service Medicare data before their interview date who had an SMC identified within that period. We compared the groups' demographic, functional, and medical characteristics and followed up them for six months to compare outcomes.ResultsAmong subjects in the 2016 (ICD-10) sample, 19.9% were hospitalized, 24.6% used the emergency department, 7.2% died, and average Medicare spending totaled $9902.04 over six months of follow-up. We observed no significant differences between the 2014 and 2016 samples (P > 0.05); both samples represent 18% of Medicare fee-for-service beneficiaries.ConclusionIdentifying the seriously ill population using currently available data requires using ICD-10 to define SMCs. Routine measurement of function, quality of life, and caregiver strain will further enhance the identification process and efficiently target palliative care services and appropriate quality measures.     

Control and Context Are Central for People With Advanced Illness Experiencing Breathlessness: A Systematic Review and Thematic Synthesis

Context

Breathlessness is common and distressing in advanced illness. It is a challenge to assess, with few effective treatment options. To evaluate new treatments, appropriate outcome measures that reflect the concerns of people experiencing breathlessness are needed.

Health/Illness transition and telehealth: a concept analysis using the evolutionary method

TOPIC: Telehealth as an alternative to hospitalization. PURPOSE: Exploring the health/illness transition that occurs when an acutely ill client may be discharged into the home with telehealth in place of hospitalization or in an effort to promote an earlier discharge from the hospital. SOURCE: Published literature. CONCLUSION: The concept of the health/illness transition using telehealth has not been researched. Qualitative methods of research using interviews could enhance the knowledge in selecting appropriate individuals and nursing interventions to enhance the clients' transition from the hospital to the home with telehealth.     

The Experience to Implement Palliative Care in Long-term Care Facilities: A Grounded Theory Study of Caregivers

PurposeThe purpose of this study was to explore the experiences of caregivers in long-term care facilities as they implement palliative care. Although palliative care has been available in Taiwan for more than 30 years, it is often provided in hospitals, few models in the long-term care facilities.MethodsSemi-structured interviews using grounded theory methodology and purposive sampling. Two small long-term care facilities that had performed well in palliative care were selected from eastern Taiwan. A total of 12 caregivers participated in in-depth semi-structured face-to-face interviews.ResultsFour major stages in the implementation of palliative care were identified: (1) feeling insecure, (2) clarifying challenges, (3) adapting to and overcoming the challenges, and (4) comprehending the meaning of palliative care. The core category of these caregivers as “the guardians at the end of life” reflects the spirit of palliative care.ConclusionThis study demonstrates that successful palliative care implementation would benefit from three conditions. First, the institution requires a manager who is enthusiastic about nursing care and who sincerely promotes a palliative care model. Second, the institution should own caregivers who possess personality traits reflective of enthusiasm for excellence, unusual ambition, and a true sense of mission. Third, early in the implementation phase of the hospice program, the institution must have the consistent support of a high-quality hospice team.     

Mobile Application-Based Education to Improve Family Caregivers’ Readiness: Feasibility Study

Family caregivers often lack preparation to provide care at home to manage symptoms for patients with life-limiting illnesses. Nurse practitioners can be instrumental in enhancing caregiver readiness by educating relatives about symptom management. Mobile application (app) health education provides one solution. We evaluated the acceptability and initial effectiveness of mobile app health education intended to improve caregiver readiness among 50 family caregivers. Caregiver readiness was measured using the Caregiving Index before and after the 30-day intervention. Mobile app health education improved the caregiver readiness for the intervention group. Our findings demonstrate feasibility and acceptability for delivering education to family caregivers through a smartphone app.     

The new neighbor: experiences of living next door to people suffering from long-term mental illness

The transition from hospital to community care for people with long-term mental illness is of growing concern. The aim of the present study was to illuminate if and how people with long-term mental illness have affected their neighbourhood after re-establishing themselves in apartments of their own. Nineteen neighbours of group homes for people with long-term mental illness, in seven different communities in eastern Norway, have been interviewed. The grounded theory procedures as well as the constant comparative method were employed to analyse the findings. From the data, one main category was identified: the need for information.     

Sources of Palliative Care Knowledge Among Patients With Advanced or Metastatic Gynecologic Cancer

ContextA minority of patients with advanced or metastatic gynecologic cancer utilize palliative care and lack of knowledge may be a barrier to receiving palliative care services.ObjectivesTo identify sources used by patients with advanced or metastatic gynecologic cancer to learn about palliative care and evaluate for differences in knowledge about palliative care and palliative care utilization by knowledge source.MethodsPatients with gynecologic cancer receiving treatment for advanced or metastatic gynecologic cancer at a single academic medical center were surveyed about their awareness of and knowledge about palliative care. Medical chart review was conducted.ResultsOf the 111 women surveyed, 70 had heard of palliative care (63%). Sixty-eight specified from where they learned of palliative care: cancer care (n = 28; 41.2%), word of mouth (n = 26; 38.2%), work (n = 6; 8.8%), self-education (n = 4; 5.9%), personal experience (n = 2; 2.9%), or do not know (n = 2; 2.9%). Knowledge about palliative care (P = 0.35) and palliative care utilization (P = 0.81) did not differ by awareness of palliative care.ConclusionMost women receiving treatment for advanced gynecologic cancer have heard of palliative care from sources other than their cancer care providers. Knowledge about palliative care and source of knowledge about palliative care were not associated with palliative care utilization. Awareness of palliative care and palliative care utilization may be improved by increasing the low rate of health provider-based education and engaging cancer patients' social networks.     

Factors Associated With the Use of U.S. Community–Based Palliative Care for Children With Life-Limiting or Life-Threatening Illnesses and Their Families: An Integrative Review

Context

As children with life-limiting illnesses (LLIs) and life-threatening illnesses (LTIs) live longer, challenges to meeting their complex health care needs arise in homes and communities, as well as in hospitals. Integrated knowledge regarding community-based pediatric palliative care (CBPPC) is needed to strategically plan for a seamless continuum of care for children and their families.

Physician Decision-Making in the Setting of Advanced Illness: An Examination of Patient Disposition and Physician Religiousness

Context

Little is known about patient and physician factors that affect decisions to pursue more or less aggressive treatment courses for patients with advanced illness.

Impact of Palliative Care on Quality of End-of-Life Care Among Brazilian Patients With Advanced Cancers

ContextMany patients with advanced cancer experience aggressive care during the end of life (EOL). Several studies have evaluated the benefits of palliative care (PC) on the reduction of aggressive measures; however, limited data are available about their benefit in Brazilian patients.ObjectivesTo evaluate the impact of PC on the reduction of aggressive measures at the EOL.MethodsLongitudinal study analyzed retrospectively medical records of patients who died of advanced cancer from 2010 to 2014. Data were obtained on PC referral and five quality-of-care indicators at the EOL; that is, emergency department visits, hospital admission, intensive care unit admission, use of systemic antineoplastic therapy within the last 30 days of life, and place of death in hospital as well as the use of a composite score for aggressiveness of care.ResultsOf the 1284 patients, 832 (65%) received some aggressive measures in EOL care. Over the years, there was a reduction in the aggressiveness of care (score = 0: 33.2% vs. 47.1%; P < 0.001). Patients not seen by PC received greater aggressive care compared with patients consulted by PC (score ≥1: 87.4% vs. 52.8%; P < 0.001). Early PC was associated with less chemotherapy (P = 0.001) and fewer emergency department visits (P = 0.004) in the last 30 days of life, when compared with late PC. However, there were no demonstrated benefits to significantly reduce the composite score at EOL care aggressiveness.ConclusionPatients with an advanced cancer consultation by PC staff received less aggressive care at the EOL when compared with patients without PC.     

Patient Patterns and Perspectives on Using Opioid Regimens for Chronic Cancer Pain

ContextWith increasing attention to the undertreatment of cancer pain in parallel with concerns about opioid misuse, little is known about how patients with advanced cancer adhere to opioid regimens for chronic cancer pain.ObjectivesWe explored patient approaches to managing chronic cancer pain with long-acting opioids.MethodsIn a multimethods study at an academic medical center, adult patients with chronic cancer pain (n = 17) used electronic pill caps to record adherence to prescribed long-acting opioid regimens. After eight weeks, patients viewed their adherence records and completed a semistructured interview about their opioid use. With a framework approach, we coded interview data (Kappa >0.95) and identified themes in how patients perceived and used opioids to manage cancer pain.ResultsPatients (59% female; 94% non-Hispanic white; median age = 65 years) felt grateful about pain benefit from opioids yet concerned about opioid side effects and addiction/tolerance. Main reasons for nonadherence included both intentional decisions (e.g., skipping doses) and unintentional barriers (e.g., missing doses due to inconsistent sleep schedules). Overall, patients set their own opioid adherence goals and developed routines to achieve them. Residual pain varied and was not consistently linked with opioid adherence.ConclusionPatients commonly felt conflicted about using prescribed long-acting opioids to manage cancer pain due to concurrent perceptions of their risks and benefits, and they set their own parameters for opioid-taking practices. Intentional and unintentional deviations from prescribed opioid schedules highlight the need to enhance adherence communication, education, and counseling, to optimize the use of long-acting opioids as a component of cancer pain management.     

Research Article: Participation of patients with chronic illness in nursing care: An Iranian perspective

The increasing number of chronically ill people has served as an impetus for the promotion of patient participation in nursing care. However, little is known about patient participation in Iran. The aim of this study was to identify the factors that are relevant to patient participation and the nature of that participation, as experienced by chronically ill patients and registered nurses in Iran. Grounded theory was used as the method. Twenty‐two participants were recruited by using purposeful and theoretical sampling. The data were generated by semistructured interviews and participant observations. Constant comparison was used for the data analysis. This study indicated that participation is an interactive process between nurses, patients, and family members in the caregiving context. Participation occurred when the caring agents worked together. The core category of “convergence of the caring agents” emerged. The subcategories emerged as the levels of participation and included “adhering”, “involving”, “sharing”, and “true participation”. The factors related to the caring agents and caregiving context could be considered as predictors of the level of participation when caring for these patients.     

Palliative Sedation in Patients With Advanced Cancer Followed at Home: A Prospective Study

ContextHome care programs in Italy.ObjectivesThe aim of this study was to assess a protocol for palliative sedation (PS) performed at home.MethodsA total of 219 patients were prospectively assessed to evaluate a PS protocol in patients with advanced cancer followed at home by two home care programs with different territorial facilities. The protocol was based on stepwise administration of midazolam.ResultsA total of 176 of the patients died at home, and PS was performed in 24 of these patients (13.6%). Younger patients received the procedure more frequently than older patients (P = 0.012). The principal reasons to start PS were agitated delirium (n = 20) and dyspnea (n = 4). Mean duration of PS was 42.2 ± 30.4 hours, and the mean doses of midazolam were 23–58 mg/day. Both the home care team and the patients' relatives expressed optimal or good levels of satisfaction with the procedure in all but one case, respectively.ConclusionThis protocol for PS was feasible and effective in minimizing distress for a subgroup of patients who died at home. The characteristics of patients who may be effectively sedated at home should be better explored in future studies.     

Patterns and Outcomes of Care in Children With Advanced Heart Disease Receiving Palliative Care Consultation

Context

Although access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD).

Quality of Care from a Patient Perspective

The aim of the present study was to develop a theoretical understanding of quality of care from a patient perspective, using a grounded theory approach. Thirty-five interviews were conducted with a sample of 20 adult hospitalized patients (mean age: 60 years) in a clinic for infectious diseases. Data were analysed according to the constant comparative method. A model was formulated according to which quality of care can be understood in the light of two conditions, the resource structure of the care organization and the patient's preferences. The resource structure of the care organization consists of person-related and physical- and administrative environmental qualities. The patient's preferences have a rational and a human aspect. Within this framework, patients' perceptions of quality of care may be considered from four dimensions: the medical-technical competence of the caregivers; the physical-technical conditions of the care organization; the degree of identity-orientation in the attitudes and actions of the caregivers and the socio-cultural atmosphere of the care organization. The model is discussed in relation to existing theories in the field.     

Striving for independence: experiences and needs of service users with life limiting conditions

Title.  Striving for independence: experiences and needs of service users with lifelimiting conditions.
Aim.  This paper is a report of a study to explore what service users with a range of life-limiting conditions identify as their key experiences and needs generally and, specifically, from health and social care services.
Background.  Whilst internationally palliative care has a primary focus on service users who have cancer, there is growing evidence that those with non-cancer life-limiting conditions have similar palliative care needs. The literature has mainly been focused on independence, choice and control at an individual level, with wider influences on the maintenance or attainment of independence ignored.
Method.  A participatory approach was used in 2003–2004, with both the researcher and a group of service users working together in all stages of the study. Twenty-five participants in receipt of support from an acute hospital, primary care, social services and a hospice took part. Face-to-face individual interviews and small discussion groups were conducted and data were analysed thematically.
Findings.  Eight different but interconnected themes were identified. Independence/dependence was an overarching theme, with negotiation between independence and dependence being evident across all themes. This theme and the influence of health and social care services on the experience of living with life-limiting conditions are the focus of this paper.
Conclusion.  Palliative care and practitioners should focus on maximizing independence at both the individual and structural levels. How services for those with life-limiting conditions are provided and relationships with health and social care staff can directly impact on an individual's experience of independence, choice and control.     

Associations of Participation-Focused Strategies and Rehabilitation Service Use With Caregiver Stress After Pediatric Critical Illness

Objective(s)

Determine the associations between having participation-focused strategies and receiving rehabilitation services in the pediatric intensive care unit (PICU) with caregiver stress over 6 months post-PICU discharge.