A qualitative study on redefining normality in relatives of patients with advanced cancer.

OBJECTIVE: To obtain insight into adaptation processes of redefining normality and its influencing factors in relatives of patients with advanced cancer. METHODS: An exploratory qualitative study among relatives of patients with advanced cancer was conducted. Participants were purposively recruited. Ten in-depth individual (relative only) and 16 dyad (relative and patient together) interviews were conducted, transcribed verbatim, and analyzed by means of thematic analysis, drawing on elements of grounded theory, combining both inductive and deductive elements. RESULTS: Two adaptation processes of (redefining) normality were identified: assimilation and accommodation. The latter was found to be the main way of adapting to new events. Assimilative coping strategies entailed "continuing to do the same activities as done before the disease," "difficulty accepting the situation," "avoiding to think about the disease," and "living in the short term." Accommodative strategies involved "arranging practical matters," "thinking about the future," "doing what is feasible," "engaging in new activities," "accepting the situation," "seeking distraction," "living in the short term," and "focusing on what truly matters in life." The interplay between the diagnosis and treatment of cancer, a deteriorating disease status, and the accompanying uncertainty about the future was of influence on the relatives' coping strategies. CONCLUSION: When the new situation is too divergent to assimilate, accommodation may be necessary for relatives to cope with the growing complexity of the consequences of their loved one's illness. Accommodative coping then involves accepting the changing reality and actively making the necessary adjustments to build resilience and cope with the new circumstances.

Supportive nursing care for family caregivers - A retrospective nursing file study.

BACKGROUND: Family caregivers enable patients to be cared for and die at home whereas nurses aim to support the family caregivers of these patients. Information on how this support is provided and how this is documented in nursing files is largely lacking. AIM: To gain insight in nurses' reports on the supportive care for family caregivers. METHODS: We studied 59 nursing files of adult patients who had received hospice home care in the Netherlands from 4 home care organisations between August 2017 and October 2018. Information on supportive nursing care for family caregivers was retrieved from the nursing files based on a prestructured form. Data was quantitatively and qualitatively analysed. RESULTS: 54 out of 59 nursing files contained information about family caregivers; 40 files contained nursing diagnoses on family caregivers and in 26 files nursing interventions on supportive care for family caregivers were reported. CONCLUSION: Only half of the nursing files contained information about supportive nursing care for family caregivers. Complete nursing documentation of provided care to family caregivers is needed.

Self-management of patients with advanced cancer: A systematic review of experiences and attitudes.

BACKGROUND: Patients with advanced cancer are increasingly expected to self-manage. Thus far, this topic has received little systematic attention. AIM: To summarise studies describing self-management strategies of patients with advanced cancer and associated experiences and personal characteristics. Also, to summarise attitudes of relatives and healthcare professionals towards patient self-management. DESIGN: A systematic review including non-experimental quantitative and qualitative studies. Data were analysed using critical interpretive synthesis. Included studies were appraised on methodological quality and quality of reporting. DATA SOURCES: MEDLINE, Embase, Cochrane Central, PsycINFO, CINAHL, Web of Science and Google Scholar (until 11 June 2019). RESULTS: Of 1742 identified articles, 31 moderate-quality articles describing 8 quantitative and 23 qualitative studies were included. Patients with advanced cancer used self-management strategies in seven domains: medicine and pharmacology, lifestyle, mental health, social support, knowledge and information, navigation and coordination and medical decision-making (29 articles). Strategies were highly individual, sometimes ambivalent and dependent on social interactions. Older patients and patients with more depressive symptoms and lower levels of physical functioning, education and self-efficacy might have more difficulties with certain self-management strategies (six articles). Healthcare professionals perceived self-management as desirable and achievable if based on sufficient skills and knowledge and solid patient-professional partnerships (three articles). CONCLUSION: Self-management of patients with advanced cancer is highly personal and multifaceted. Strategies may be substitutional, additional or even conflicting compared to care provided by healthcare professionals. Self-management support can benefit from an individualised approach embedded in solid partnerships with relatives and healthcare professionals.

Five Phases of Recovery and Rehabilitation After Allogeneic Stem Cell Transplantation: A Qualitative Study.

BACKGROUND: For patients with a hematological malignancy, allogeneic stem cell transplantation (alloSCT) is a treatment modality that may cause a wide range of problems. Little is known about the process of recovery and rehabilitation and the problems that alloSCT patients are confronted with during the first-year posttransplant. OBJECTIVE: This study explored the problems of patients during the first year after alloSCT, to better understand the process of recovery and rehabilitation. METHODS: In a qualitative study, hemato-oncology patients were interviewed 1-year posttransplant. The semistructured interviews were transcribed verbatim, coded, and analyzed using constant comparative analysis. RESULTS: Ten participants were included until saturation of data was reached. The patients had experienced various problems and had gone through an individual process of recovery and rehabilitation. Nevertheless, 5 phases could be distinguished: (1) survive, (2) on the receiving end, (3) bring under control, (4) start recuperation, and (5) retrospection. The duration of each phase varied between patients. CONCLUSION: Although patients experienced individual problems after alloSCT, they all followed a common pathway. Posttransplant care might be improved by adjusting the care to the distinct phases that the patients pass through. IMPLICATIONS FOR PRACTICE: Nurses can play an important role in achieving improvements in posttransplant care by adjusting care to the individual needs of patients within the distinct phases.Future nursing research should confirm and refine this process of recovery and rehabilitation and assess the effects of improvement measures in alloSCT patients and in other populations.

Correction: Palliative care team consultation and quality of death and dying in a university hospital: A secondary analysis of a prospective study.

[This corrects the article DOI: 10.1371/journal.pone.0201191.].

Palliative care team consultation and quality of death and dying in a university hospital: A secondary analysis of a prospective study.

PURPOSE: Involvement of palliative care experts improves the quality of life and satisfaction with care of patients who are in the last stage of life. However, little is known about the relation between palliative care expert involvement and quality of dying (QOD) in the hospital. We studied the association between palliative care team (PCT) consultation and QOD in the hospital as experienced by relatives. METHODS: We conducted a secondary analysis of data from a prospective study among relatives of patients who died from cancer in a university hospital and compared characteristics and QOD of patients for whom the PCT was or was not consulted. RESULTS: 175 out of 343 (51%) relatives responded to the questionnaire. In multivariable linear regression PCT was associated with a 1.0 point better QOD (95% CI 0.07-1.96). In most of the subdomains of QOD, we found a non-significant trend towards a more favorable outcome for patients for whom the PCT was consulted. Patients for whom the PCT was consulted had more often discussed their preferences for medical treatment, had more often been aware of their imminent death and had more often been at peace with their imminent death. Further, patients for whom the PCT was consulted and their relatives had more often been able to say goodbye. Relatives had also more often been present at the moment of death when a PCT had been consulted. CONCLUSION: For patients dying in the hospital, palliative care consultation is associated with a favorable QOD.

Advance Care Planning in Frail Older Adults: A Cluster Randomized Controlled Trial.

OBJECTIVES: To determine the effectiveness of advance care planning (ACP) in frail older adults. DESIGN: Cluster randomized controlled trial. SETTING: Residential care homes in the Netherlands (N=16). PARTICIPANTS: Care home residents and community-dwelling adults receiving home care (N=201; n=101 intervention; n=100 control). Participants were 75 years and older, frail, and capable of consenting to participation. INTERVENTION: Adjusted Respecting Choices ACP program. MEASUREMENTS: The primary outcome was change in patient activation (Patient Activation Measure, PAM-13) between baseline and 12-month follow-up. Secondary outcomes included change in quality of life (SF-12), advance directive (AD) completion, and surrogate decision-maker appointment. Use of medical care in the 12 months after inclusion was also assessed. Multilevel analyses were performed, controlling for clustering effects and differences in demographics. RESULTS: Seventy-seven intervention participants and 83 controls completed the follow-up assessment. There were no statistically significant differences between the intervention (-0.26±11.2) and control group (-1.43±10.6) in change scores of the PAM (p=.43) or the SF-12. Of intervention group participants, 93% completed an AD, and 94% appointed a decision-maker. Of control participants, 34% completed an AD, and 67% appointed a decision-maker (p<.001). No differences in the use of medical care were found. CONCLUSIONS: ACP did not increase levels of patient activation or quality of life but did increase completion of ADs and appointment of surrogate decision-makers. It did not affect use of medical care.

Interventions in hospitalised patients with cancer: the importance of impending death awareness.

OBJECTIVES: Burdensome and futile interventions with the aim of prolonging life should be avoided in dying patients. However, current clinical practice has hardly been investigated.We examined the number and type of diagnostic and therapeutic medical interventions in hospitalised patients with cancer in their last days of life. In addition, we investigated if physician awareness of impending death affected the use of these interventions. METHODS: Questionnaire study and medical record study. Attending physicians of patients who died in a university hospital between January 2010 and June 2012 were asked whether they had been aware of the patient's impending death. The use of diagnostic and therapeutic interventions and medications was assessed by studying patients' charts. We included 131 patients. RESULTS: In the last 72 and 24 hours of life, 59% and 24% of the patients received one or more diagnostic interventions, respectively. Therapeutic interventions were provided to 47% and 31%. In the last 24 hours of life, patients received on average 5.8 types of medication.Awareness of a patient's impending death was associated with a significant lower use of diagnostic interventions (48% vs 69% in the last 72 hours; 11% vs 37% in the last 24 hours) and several medications that potentially prolong life (eg, antibiotics and cardiovascular medication). CONCLUSIONS: Many patients with cancer who die in hospital receive diagnostic and therapeutic interventions in the last days of life of which their advantages are questionable. To improve end-of-life care, medical care should be adapted.

A cluster randomized controlled trial on the effects and costs of advance care planning in elderly care: study protocol.

BACKGROUND: Currently, health care and medical decision-making at the end of life for older people are often insufficiently patient-centred. In this trial we study the effects of Advance Care Planning (ACP), a formalised process of timely communication about care preferences at the end of life, for frail older people. METHODS/DESIGN: We will conduct a cluster randomised controlled trial among older people residing in care homes or receiving home care in the Netherlands. The intervention group will receive the ACP program Respecting Choices® in addition to usual care. The control group will receive usual care only. Participants in both groups will fill out questionnaires at baseline and after 12 months. We hypothesize that ACP will lead to better patient activation in medical decision making and quality of life, while reducing the number of medical interventions and thus health care costs. Multivariate analysis will be used to compare differences between the intervention group and the control group at baseline and to compare differences in changes after 12 months following the inclusion. DISCUSSION: Our study can contribute to more understanding of the effects of ACP on patient activation and quality of life in frail older people. Further, we will gain insight in the costs and cost-effectiveness of ACP. This study will facilitate ACP policy for older people in the Netherlands. TRIAL REGISTRATION: Nederlands Trial Register: NTR4454.

Dying in the hospital: what happens and what matters, according to bereaved relatives.

CONTEXT: Most deaths in Western countries occur in hospital, but little is known about factors determining the quality of dying (QOD). OBJECTIVES: The aim was to assess the QOD in hospital as experienced by relatives and identify factors related to QOD. METHODS: A cross-sectional study on 18 wards of a university hospital in The Netherlands was conducted, including relatives of patients who died after an admission of more than six hours, from June 2009 to March 2011. Relatives' perceptions of QOD and quality of care and the relation between dimensions of QOD and overall QOD scores were assessed. RESULTS: Two hundred forty-nine relatives participated (51%) and rated overall QOD at 6.3 (SD 2.7; range 0-10). According to relatives, patients suffered from 7.0 (SD 5.8) of 22 symptoms and were at peace with imminent death in 37%. Patients had been aware of imminent death in 26%, and relatives were aware in 49%. Furthermore, 39% of patients and 50% of relatives had said good-bye, and 77% of patients died in the presence of a relative. Symptom alleviation was sufficient in 53%, and in 75%, sufficient efforts had been made to relieve symptoms. Characteristics of QOD and quality of care could be summarized in nine domains, explaining 34% of the variation of QOD scores. Medical, personalized, and supportive care were most strongly related to QOD. CONCLUSION: Relatives rated QOD as sufficient. A majority of patients and relatives were not sufficiently prepared for imminent death, and relatives experienced many problems. QOD appears to be a multidimensional construct, strongly affected by medical care and staff attentiveness.

Is physician awareness of impending death in hospital related to better communication and medical care?

BACKGROUND: In hospitals, where care is focused on cure and life prolongation, impending death is often recognized too late. Physician awareness of impending death is a prerequisite for communication with patients and relatives about dying in hospital and providing care that adequately addresses patients' needs. OBJECTIVE: To examine to what extent physicians are aware of the impending death of their dying patients and if awareness is related with communication and medical care, with quality of life in the last 3 days and quality of dying. DESIGN: Retrospective survey among hospital physicians after patient deaths. SETTING/SUBJECTS: Patients who died between June 2009 and February 2011 at Erasmus University Medical Center (Rotterdam, The Netherlands). MEASUREMENTS: Physician self-reported awareness of impending death, communication with patients and relatives, medical care, quality of life in the last 3 days, and quality of dying. RESULTS: The response rate was 44% (n=228). Physicians reported that they had been aware of the impending death in 67% of their dying patients. If they had been aware, discussing death with patients and relatives was more likely, as well as changing the treatment goal into comfort care or withholding treatment and prescribing opioids in the last 3 days of life. When physicians had been aware of impending death, they rated the quality of dying higher. CONCLUSIONS: In two-thirds of deaths, hospital physicians had been aware of impending death of their dying patients. Physician awareness was related with more communication and more appropriate care in the last days of life.

Validation of the Rotterdam MOVE2PC Questionnaire for assessment of nurses' knowledge and opinions on palliative care.

The purpose of this study was the psychometric testing of a questionnaire to assess nurses' opinions, subjective norms, perceived difficulties, and knowledge related to palliative care. The 63-item MOVE2PC Questionnaire was tested among 219 nurses in groups differing in education and experience. The intra-rater agreement was moderate to good (к > .5κmax ), and internal consistency was good (alpha = .77). Construct validity was demonstrated by between-groups differences in knowledge, opinions, and perceived difficulties. Responsiveness was shown by improved scores after an education program. Time of completion was 20 minutes, and 99% skipped at most five items, demonstrating feasibility. Findings support the usefulness of the instrument for assessing nurses' knowledge and views on palliative care.

Improving the quality of palliative and terminal care in the hospital by a network of palliative care nurse champions: the study protocol of the PalTeC-H project.

BACKGROUND: The quality of care of patients dying in the hospital is often judged as insufficient. This article describes the protocol of a study to assess the quality of care of the dying patient and the contribution of an intervention targeted on staff nurses of inpatient wards of a large university hospital in the Netherlands. METHODS/DESIGN: We designed a controlled before and after study. The intervention is the establishment of a network for palliative care nurse champions, aiming to improve the quality of hospital end-of-life care. Assessments are performed among bereaved relatives, nurses and physicians on seven wards before and after introduction of the intervention and on 11 control wards where the intervention is not applied. We focus on care provided during the last three days of life, covered in global ratings of the quality of life in the last three days of life and the quality of dying, and various secondary endpoints of treatment and care affecting quality of life and dying. DISCUSSION: With this study we aim to improve the understanding of and attention for patients' needs, and the quality of care in the dying phase in the hospital and measure the impact of a quality improvement intervention targeted at nurses.