The influence of "bad news" and "neutral/good news" on patients' perception of physician empathy during oncology consultations.

OBJECTIVES: Being met with empathy increases information sharing, treatment coherence, and helps patients to recover faster. However, we do not know how the content of the conversation about disease progression, new treatments, or other issues concerning serious illness affects patients' perceptions of the physician's empathy, and thus, the quality of the conversation. This study aimed to test the hypothesis that patients will rate their physician lower following a "bad news" consultation using the consultation and relational empathy (CARE) measure. METHODS: A total of 186 outpatients from the Department of Oncology were recruited for this study. After meeting with a patient, the physician filled out a form, placing the patient in either the "bad news" group, or the "neutral/good news" group along with information about the patient and the consultation. The patient was given the CARE measure after the visit. RESULTS: The patients who had received bad news rated their physicians a significantly lower score on the CARE measure, even though the effect size was small, than those who had neutral/good news. On average, bad news consultations were 11 min longer. CONCLUSIONS: Physicians need to be aware of the patients' need to be known and understood, in addition to having skills to attend to emotional cues and concerns, since the current study's finding could be a sign either of the content being projected onto the physician or that the physician is focused on the message rather than on the patient.

Increased patient satisfaction by integration of palliative care into geriatrics-A prospective cohort study.

BACKGROUND: Integration of oncology and palliative care has been shown to increase quality of life in advanced disease. To meet the needs of the growing older population, integration of palliative care and geriatrics has been proposed but scarcely described. OBJECTIVES: The aim of this study was to integrate palliative care into geriatrics by a structured care guide, the Swedish Palliative Care Guide, and to evaluate its effect on patient satisfaction, health-related quality of life and symptom burden, compared to a control group. METHODS: Geriatric in-patients over 65 years of age were included in the study, those with cognitive impairment were excluded. Data was collected before (baseline) and after the implementation (intervention) of the Swedish Palliative Care Guide. Patient satisfaction was evaluated two weeks after discharge with questions from a national patient survey. Health-related quality of life was measured with EQ-5D-3L and symptom burden with Edmonton Symptom Assessment Scale. RESULTS: In total, 400 patients were included, 200 in the baseline- and intervention group, respectively. Mean age was 83 years in both groups. Patient satisfaction was significantly higher in nine out of ten questions (p = 0.02-<0.001) in the intervention group compared to baseline. No differences between the groups were seen in health-related quality of life or symptom burden. CONCLUSION: A significant effect on patient satisfaction was seen after implementation of the Swedish Palliative Care Guide in geriatric care. Thus, integration of palliative care and geriatrics could be of substantial benefit in the growing population of older adults with multimorbidity and frailty.

Family cohesion predicts long-term health and well-being after losing a parent to cancer as a teenager: A nationwide population-based study.

BACKGROUND: Parentally bereaved children are at increased risk of negative consequences, and the mediating factors most consistently identified are found to be related to family function after the loss, including cohesion. However, existing evidence is limited, especially with respect to children and youths' own perception of family cohesion and its long-term effects on health and well-being. Therefore, the aim of this study was to investigate self-reported family cohesion the first year after the loss of a parent to cancer and its association to long-term psychological health and well-being among young adults that were bereaved during their teenage years. METHOD AND PARTICIPANTS: In this nationwide population-based study, 622 of 851 (73%) young adults (aged 18-26) responded to a study-specific questionnaire six to nine years after losing a parent to cancer at the age of 13 to 16. Associations were assessed with modified Poisson regression. RESULTS: Bereaved youth that reported poor family cohesion the first year after losing a parent to cancer had a higher risk of reporting symptoms of moderate to severe depression six to nine years after the loss compared to those reporting good family cohesion. They also had a higher risk of reporting low levels of well-being, symptoms of anxiety, problematic sleeping and emotional numbness once a week or more at the time of the survey. These results remained statistically significant after adjusting for a variety of possible confounding factors. CONCLUSION: Self-reported poor family cohesion the first year after the loss of a parent to cancer was strongly associated with long-term negative psychological health-related outcomes among bereaved youth. To pay attention to family cohesion and, if needed, to provide support to strengthen family cohesion in families facing bereavement might prevent long-term suffering for their teenage children.

Patterns of Communication About Serious Illness in the Years, Months, and Days before Death.

Background: Communication with patients and families about serious illness impacts quality of life and helps facilitate decision-making. Objective: To elucidate the pattern of communication about serious illness for patients who have died in an inpatient setting. Design: Three hundred patients from the Swedish Registry of Palliative Care 2015-2017 were randomly selected for manual chart review. Setting: Patients who died in a palliative care, oncology, or internal medicine unit in Sweden were selected. Measurements: We report on the frequency of conversations at three time points, 6 months or longer before death ("Years"), 15 days-6 months before death ("Months"), and 0-14 days before death ("Days"). We also report the timing of the conversation about dying. Results: A total of 249 patients were included after exclusions; they had an average of 2.1 conversations (range 1-6). The first conversation took place a median of 53 days before death and the last conversation took place a median of 9 days before death. Separate conversations with the next of kin took place a median of two days before death. We could verify a conversation about dying in only 156/249 (63%) medical records. Conclusions: Communication about serious illness between clinicians, patients, and families occurs iteratively over a period before death. Measuring the quality of communication about serious illness using a years, months, and days framework may help ensure that patients and families have sufficient information for medical and personal decision making.

Sedation in specialized palliative care: A cross-sectional study.

BACKGROUND: Palliative sedation is used to relieve refractory symptoms and is part of clinical practice in Sweden. Yet we do not know how frequently this practice occurs, how decision-making takes place, or even which medications are preferentially used. OBJECTIVES: To understand the current practice of palliative sedation in Sweden. METHODS: We conducted a retrospective cross-sectional medical record-based study. For 690 consecutive deceased patients from 11 of 12 specialized palliative care units in the southernmost region of Sweden who underwent palliative sedation during 2016, we collected data on whether the patient died during sedation and, for sedated patients, the decision-making process, medication used, and depth of sedation. RESULTS: Eight percent of patients were sedated. Almost all (94%) were given midazolam, sometimes in combination with propofol. The proportions of sedation were similar in the patient groups with and without cancer. The largest proportion of the sedated patients died in inpatient care, but 23% died at home, with specialized palliative home care. Among the patients with a decision to sedate, 42% died deeply unconscious, while for those without such a decision the corresponding figure was 16%. In only one case was there more than one physician involved in the decision to use palliative sedation. CONCLUSION: 8% of patients in specialized palliative care received palliative sedation, which is lower than international measures but much increased compared to an earlier Swedish assessment. The level of consciousness achieved often did not correspond to the planned level; this, together with indications of a scattered decision process, shows a need for clear guidelines.

A Reduced Deck of Conversation Cards of Wishes and Priorities of Patients in Palliative Care.

The individual wishes and priorities of patients with advanced disease are too often neglected, making a deck of cards with statements reflecting potential wishes and priorities a useful conversation tool. However, in the most ill patients, the card selection and sorting process may be too strenuous. The aims of this study were to explore the wishes and priorities of patients receiving palliative care and to reduce a deck of statement cards to be clinically useable even for the most ill patients. In interviews, participants selected their top 10 from a deck of 46 statement cards. Descriptive and analytical statistics were used. Thirty-nine patients from 5 specialized palliative care units in Sweden participated. Six participants died within 1 month of the interviews. "To be free from pain" was ranked as the highest priority by the majority, and "To have staff I feel comfortable with" was ranked highest by the 6 most ill participants. A deck of cards with the 20 statements most chosen by patients receiving palliative care was created. The cards cover physical, psychological, social, existential, and practical aspects and are helpful for formulating goals of care for patients and informing the development of a core outcome set for palliative care.

Higher Self-Esteem Associated With Less Symptoms of Anxiety and Depression Among Young Adults After the Loss of a Parent to Cancer-A Longitudinal Study.

Objective: The purpose of the study was to examine associations between self-esteem and symptoms of anxiety and depression among young adults who lost a parent to cancer. Methods: Older adolescents and young adults, aged 16 to 28 years, who had lost their parent to cancer and had accepted an invitation to join a support group, completed a questionnaire 5 to 8 months after the loss and a similar questionnaire about 10 months later (follow-up). Of a total of 77 young adults who participated in the study, 56 completed both questionnaires. Self-esteem was measured with the Rosenberg Self-Esteem Scale. Symptoms of anxiety and depression were measured with the Hospital Anxiety and Depression Scale. Univariate and multiple linear regression models were used to analyze the associations. Result: Self-esteem was significantly associated with symptoms of anxiety and depression at baseline and at follow-up. Conclusion: This study reveals that self-esteem is a valuable explanatory variable, and that it is associated with both symptoms of anxiety and depression in bereavement. This new knowledge could be used to guide future support to parentally bereaved young adults.

A novel care guide for personalised palliative care - a national initiative for improved quality of care.

BACKGROUND: Even when palliative care is an integrated part of the healthcare system, the quality is still substandard for many patients and often initiated too late. There is a lack of structured guidelines for identifying and caring for patients; in particular for those with early palliative care needs. A care guide can act as a compass for best practice and support the care of patients throughout their palliative trajectory. Such a guide should both meet the needs of health care professionals and patients and families, facilitating discussion around end-of-life decision-making and enabling them to plan for the remaining time in life. The aim of this article is to describe the development and pilot testing of a novel Swedish palliative care guide. METHODS: The Swedish Palliative Care Guide (S-PCG) was developed according to the Medical Research Council framework and based on national and international guidelines for good palliative care. An interdisciplinary national advisory committee of over 90 health care professionals together with patient, family and public representatives were engaged in the process. The feasibility was tested in three pilot studies in different care settings. RESULTS: After extensive multi-unit and interprofessional testing and evaluation, the S-PCG contains three parts that can be used independently to identify, assess, address, follow up, and document the individual symptoms and care-needs throughout the whole palliative care trajectory. The S-PCG can provide a comprehensive overview and shared understanding of the patients' needs and possibilities for ensuring optimal quality of life, the family included. CONCLUSIONS: Based on broad professional cooperation, patients and family participation and clinical testing, the S-PCG provides unique interprofessional guidance for assessment and holistic care of patients with palliative care needs, promotes support to the family, and when properly used supports high-quality personalised palliative care throughout the palliative trajectory. Future steps for the S-PCG, entails scientific evaluation of the clinical impact and effect of S-PCG in different care settings - including implementation, patient and family outcomes, and experiences of patient, family and personnel.

Acute and long-term grief reactions and experiences in parentally cancer-bereaved teenagers.

BACKGROUND: Previous research shows that many cancer-bereaved youths report unresolved grief several years after the death of a parent. Grief work hypothesis suggests that, in order to heal, the bereaved needs to process the pain of grief in some way. This study explored acute grief experiences and reactions in the first 6 months post-loss among cancer-bereaved teenagers. We further explored long-term grief resolution and potential predictors of having had "an okay way to grieve" in the first months post-loss. METHODS: We used a population-based nationwide, study-specific survey to investigate acute and long-term grief experiences in 622 (73% response rate) bereaved young adults (age > 18) who, 6-9 years earlier, at ages 13-16 years, had lost a parent to cancer. Associations were assessed using bivariable and multivariable logistic regression. RESULTS: Fifty-seven per cent of the participants reported that they did not have a way to grieve that felt okay during the first 6 months after the death of their parent. This was associated with increased risk for long-term unresolved grief (odds ratio (OR): 4.32, 95% confidence interval (CI): 2.99-6.28). An association with long-term unresolved grief was also found for those who reported to have been numbing and postponing (42%, OR: 1.73, 95% CI: 1.22-2.47), overwhelmed by grief (24%, OR: 2.02, 95% CI: 1.35-3.04) and discouraged from grieving (15%, OR: 2.68, 95% CI: 1.62-4.56) or to have concealed their grief to protect the other parent (24%, OR: 1.83, 95% CI: 1.23-2.73). Predictors of having had an okay way to grieve included being male, having had good family cohesion, and having talked about what was important with the dying parent. CONCLUSION: More than half of the cancer-bereaved teenagers did not find a way to grieve that felt okay during the first 6 months after the death of their parent and the acute grief experiences and reaction were associated with their grief resolution long-term, i.e. 6-9 years post-loss. Facilitating a last conversation with their dying parent, good family cohesion, and providing teenagers with knowledge about common grief experiences may help to prevent long-term unresolved grief.

Development of an international Core Outcome Set (COS) for best care for the dying person: study protocol.

BACKGROUND: In contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life. In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person. METHODS: Following the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set. DISCUSSION: Core Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses.

Poor Psychosocial Well-Being in the First Year-and-a-Half After Losing a Parent to Cancer - A Longitudinal Study Among Young Adults Participating in Support Groups.

The purpose of this study was to investigate variations in psychosocial well-being over time among young adults who participated in a support group after the death of a parent from cancer. Fifty-five young adults, aged 16-28 years, completed questionnaires that measured self-esteem, anxiety, depression, and life satisfaction at three time-points during the first year-and-one-half after the loss. Results indicated overall poor psychosocial well-being with few increases in psychological health over the study period, despite access to support and social networks. However, these resources may help to prevent major impairments in the participants' future lives.

Using Cards to Facilitate Conversations About Wishes and Priorities of Patients in Palliative Care.

To avoid discomfort, health care professionals may hesitate to pursue conversations about end of life with patients. Certain tools have the potential to facilitate smoother conversations in this matter. The objective was to explore the experiences of patients in palliative care in using statement cards to talk about their wishes and priorities. Forty-six cards with statements of wishes and priorities were developed and tested for feasibility with 40 participants, who chose the 10 most important cards and shared their thoughts about the statements and conversation. Data from individual interviews and field notes were analyzed using content analysis. One category describes practical aspects of using the cards including the relevance of the content and the process of sorting the cards. The second category describes the significance of using the cards including becoming aware of what is important, sharing wishes and priorities, and reflecting on whether wishes and priorities change closer to death. The cards helped raise awareness and verbalize wishes and priorities. All statements were considered relevant. The conversations focused not only on death and dying, but also on challenges in the participants' current life situation. For the most ill and frail participants, the number of cards needs to be reduced.

Leadership in specialist palliative home care teams: A qualitative study.

AIM: The aim of this study was to describe team leaders' experiences of facilitators and barriers of leadership in specialist palliative home care teams. BACKGROUND: For effective teamwork in specialist palliative care, leadership is crucial; however, defining and agreeing on what leadership comprises may be challenging. In palliative care, teamwork is recognized as imperative for multiprofessional perspectives to meet dying patients' and families' needs. METHODS: Qualitative interviews with 13 team leaders in specialist palliative home care were performed, using the Pettigrew and Whipp framework, and analysed with directed content analysis. RESULTS: Team leaders' experiences of conditions influencing the organisation and delivery of specialist palliative home care is multifaceted and leaders seem conflicted in their approach to the multiple levels of leadership, vision and responsibilities. CONCLUSION: Team leaders in specialist palliative home care described goals of care on differing levels and, for some, fiscal restraints and external pressures influenced their vision and leadership. Team leaders experienced challenges of leadership in relation to organisational issues, feeling burdened by responsibilities, budget restraints and team size. IMPLICATIONS FOR NURSING MANAGEMENT: Team leadership is demanding and complex. In specialist palliative home care, affirming values and enabling vision during times of fiscal strain and external pressures, is challenging. For successful leadership that develops both individuals and the health care team, leaders are recommended to adapt the leadership style to the present situation surrounding the team.

Dying With Unrelieved Pain-Prescription of Opioids Is Not Enough.

CONTEXT: Fear of pain resonates with most people, in particular, in relation to dying. Despite this, there are still people dying with unrelieved pain. OBJECTIVES: We quantified the risk, and investigated risk factors, for dying with unrelieved pain in a nationwide observational cohort study. METHODS: Using data from Swedish Register of Palliative Care, we analyzed 161,762 expected deaths during 2011-2015. The investigated risk factors included cause of death, place of death, absence of an end-of-life (EoL) conversation, and lack of contact with pain management expertise. Modified Poisson regression models were fitted to estimate risk ratios (RRs) and 95% confidence intervals (CIs) for dying with unrelieved pain. RESULTS: Unrelieved pain during the final week of life was reported for 25% of the patients with pain, despite prescription of opioids PRN in 97% of cases. Unrelieved pain was common both among patients dying of cancer and of nonmalignant chronic diseases. Statistically significant risk factors for unrelieved pain included hospital death (RR = 1.84, 95% CI 1.79-1.88) compared with dying in specialist palliative care, absence of an EoL conversation (RR = 1.42, 95% CI 1.38-1.45), and dying of cancer in the bones (RR = 1.13, 95% CI 1.08-1.18) or lung (RR = 1.10, 95% CI 1.06-1.13) compared with nonmalignant causes. CONCLUSION: Despite almost complete prescription of opioids PRN for patients with pain, patients die with unrelieved pain. Health care providers, hospitals in particular, need to focus more on pain in dying patients. An EoL conversation is one achievable intervention.

Symptom relief during last week of life in neurological diseases.

OBJECTIVES: The aim of this study was to investigate symptom prevalence, symptom relief, and palliative care indicators during the last week of life, comparing them for patients with motor neuron disease (MND), central nervous system tumors (CNS tumor), and other neurological diseases (OND). MATERIAL & METHODS: Data were obtained from the Swedish Register for Palliative Care, which documents care during the last week of life. Logistic regression was used to compare patients with MND (n = 419), CNS tumor (n = 799), and OND (n = 1,407) as the cause of death. RESULTS: The most prevalent symptoms for all neurological disease groups were pain (52.7% to 72.2%) and rattles (58.1% to 65.6%). Compared to MND and OND, patients with CNS tumors were more likely to have totally relieved pain, shortness of breath, rattles, and anxiety. They were also more likely to have their pain assessed with a validated tool; to receive symptom treatment for anxiety, nausea, rattles, and pain; to have had family members receive end-of-life discussions; to have someone present at death; and to have had their family members offered bereavement support. Both patients with CNS tumor and MND were more likely than patients with OND to receive consultation with a pain unit and to have had end-of-life discussions. CONCLUSIONS: The study reveals high symptom burden and differences in palliative care between the groups during the last week of life. There is a need for person-centered care planning based on a palliative approach, focused on improving symptom assessments, relief, and end-of-life conversations.

The integrated palliative care outcome scale for patients with palliative care needs: Factors related to and experiences of the use in acute care settings.

OBJECTIVE: Implementation of patient-reported outcome measures for patients with palliative care needs is characterized by both enablers and barriers. The ways in which healthcare professionals experience the use of assessment tools is important. Our aims were to explore factors contributing to or hindering patients with palliative care needs in assessing their symptoms with the Integrated Palliative Care Outcome Scale (IPOS) and to explore healthcare professionals' experiences of the use of IPOS in acute care settings. METHOD: Data were collected as a part of the evaluation of the feasibility of an implementation strategy for introducing IPOS. Data from three participating acute care units were included. We used descriptive and analytical statistics; a qualitative content analysis was also performed. RESULT: A total of 309 patients were eligible to be offered assessment of symptoms with IPOS. Of these 69 (22%) had completed IPOS. A significant positive association was found between healthcare professionals' participation in training sessions and completed IPOS. The experiences of IPOS were split into two categories: "IPOS acting as a facilitator" and "barriers to the use of IPOS." The use of IPOS was described as contributing to person-centered care of patients with palliative care needs and inspiration to improved routines. Healthcare professionals' feelings of uncertainty about how to approach severely ill patients and their family members appear to have hindered their use of IPOS. SIGNIFICANCE OF RESULTS: We found an association between healthcare professionals' participation in training sessions and patients who completed IPOS, indicating the need for a high degree of attendance at the training to achieve successful implementation. The healthcare professionals expressed feelings of insecurity concerning the use of IPOS indicating a need for further education and clinical support in its use of IPOS. Nevertheless, use of IPOS was considered to contribute to improved care of patients with palliative care needs.