Margareta Brännström

Effects of person-centred and integrated chronic heart failure and palliative home care. PREFER: a randomized controlled study.

We evaluated the outcome of person‐centred and integrated Palliative advanced home caRE and heart FailurE caRe (PREFER) with regard to patient symptoms, health‐related quality of life (HQRL), and hospitalizations compared with usual care.

Being a palliative nurse for persons with severe congestive heart failure in advanced homecare.

Advanced homecare for persons with congestive heart failure is a ‘new’ challenge for palliative nurses. The aim of this study is to illuminate the meaning of being a palliative nurse for persons with severe congestive heart failure in advanced homecare. Narrative interviews with 11 nurses were conducted, tape-recorded, and transcribed verbatim. A phenomenological-hermeneutic method was used to interpret the text. One meaning of being a palliative nurse is being firmly rooted and guided by the values of palliative culture. Being adaptable to the patients way of life carries great weight. On one hand nurses live out this value, facilitating for the patients to live their everydaylife as good as possible. Being a facilitator is revealed as difficult, challenging, but overall positive. On the other hand nurses get into a tight corner when values of palliative culture clash and do not correspond with the nurses interpretation of what is good for the person with congestive heart failure. Being in such a tight corner is revealed as frustrating and giving rise to feelings of inadequacy. Thus, it seems important to reflect critical on the values of palliative culture.

A cost-effectiveness study of person-centered integrated heart failure and palliative home care: Based on a randomized controlled trial

Background: Previous economic studies of person-centered palliative home care have been conducted mainly among patients with cancer. Studies on cost-effectiveness of advanced home care for patients with severe heart failure are lacking when a diagnosis of heart failure is the only main disease as the inclusion criterion. Aim: To assess the cost-effectiveness of a new concept of care called person-centered integrated heart failure and palliative home care. Design: A randomized controlled trial was conducted from January 2011 to 2013 at a center in Sweden. Data collection included cost estimates for health care and the patients’ responses to the EQ-5D quality of life instrument. Setting/participants: Patients with chronic and severe heart failure were randomly assigned to an intervention (n = 36) or control (n = 36) group. The intervention group received the Palliative Advanced Home Care and Heart Failure Care intervention over 6 months. The control group received the same care that is usually provided by a primary health care center or heart failure clinic at the hospital. Results: EQ-5D data indicated that the intervention resulted in a gain of 0.25 quality-adjusted life years, and cost analysis showed a significant cost reduction with the Palliative Advanced Home Care and Heart Failure Care intervention. Even if costs for staffing are higher than usual care, this is more than made up for by the reduced need for hospital-based care. This intervention made it possible for the county council to use €50,000 for other needs. Conclusion: The Palliative Advanced Home Care and Heart Failure Care working mode saves financial resources and should be regarded as very cost-effective.

Life experiences of security and insecurity among women with chronic heart failure

AIM This paper is a report of a study illuminating womens experiences of living with chronic heart failure with a focus on feelings of security and insecurity. BACKGROUND To be secure is a basic human need. Although feelings of being insecure has been found to be a common problem among people who live with chronic heart failure few qualitative studies, particularly among women, have been carried out in the field. METHOD Eight women took part in focus group interviews during 2006. The data were analysed using qualitative content analysis. FINDINGS The womens feelings of security include acceptance of the past, everyday life and the future, trusting the self and the body despite the disease, not having to deal with dependency alone, and faith in care and treatment. The womens feelings of insecurity include feeling guilty for being sick and incapacitated, fear of living with a frail and failing body, anxiety about growing dependence on others, loneliness and death and lack of faith in care and treatment. CONCLUSION The outlook on the past, the present and the view about the future, can be fundamental for the quality of life, and the sense of security and insecurity among women living with chronic heart failure. To support a sense of security it seems essential that nursing staff attempt to understand the womens outlook on life and their personal interpretations of living with chronic heart failure. This can be crucial for enhancing feelings of security in daily life for these women.

A new model for integrated heart failure and palliative advanced homecare : rationale and design of a prospective randomized study

Background: Guidelines have concluded that there is a great need for new models of integrated care, e.g. heart failure and palliative care, in order to facilitate equality of care for dying patients, regardless of diagnosis. We found no evidence in the literature concerning the advantages and effects of integrated heart failure and palliative advanced home care for patients with severe chronic heart failure. Aim: The primary aim is to study the effects of integrated Palliative advanced homecarRE and heart FailurE caRE (PREFER) on patients’ symptom burden, quality of life, and activities of daily living (ADL) as compared to usual care. Method: Prospective, randomized study with an open-evaluation PROBE design. Optimally treated outpatients with chronic heart failure of varying aetiologies in New York Heart Association classes III−IV will be eligible to participate. Conclusion: The PREFER study is designed to investigate whether a new concept of managing patients with severe chronic heart failure by integrating palliative homecare and active heart failure treatment will reduce symptom burden, increase quality of life and ADL, and reduce the number of hospitalizations in patients with severe chronic heart failure.

Unequal care for dying patients in Sweden : a comparative registry study of deaths from heart disease and cancer

Background: The Swedish Palliative Registry is a nationwide quality registry aimed at facilitating improvement in end-of-life care. The goal is for the registry to list and report quality indicators related to care during the last week of life in all cases expected death in Sweden. Aim: To examine the quality of care during the last week of life as reported to the registry for patients with heart disease compared to those with cancer. Method: A retrospective registry study. Results: Patients dying of heart disease compared to those dying from cancer had more shortness of breath, fewer drugs prescribed as needed against the usual symptoms and often died alone. Furthermore, they and their close relatives received less information about the imminence of death and bereavement follow-up was less common. The healthcare personnel were less aware of the heart disease patients’ symptoms and less often knew about where they wished to die. Conclusion: Great differences were found in registered end-of-life care suggesting that the care given to patients with heart disease and cancer was unequal even after adjustment for age, sex and setting at the time of death. If our observational findings are confirmed in future studies there is obviously a need for new models for end-of-life management in order to facilitate the provision of equal care to dying patients regardless of diagnosis.

Effectiveness of the Liverpool care pathway for the dying in residential care homes: An exploratory, controlled before-and-after study

Background: Clinical pathways aim to ensure that individuals receive appropriate evidence-based care and interventions, with the Liverpool Care Pathway for the Dying Patient focusing on end of life. However, controlled studies of the Liverpool Care Pathway for the Dying Patient, particularly outside of cancer settings, are lacking. Aim: To compare the effects of the Liverpool Care Pathway for the Dying Patient and usual care on patients’ symptom distress and well-being during the last days of life, in residential care homes. Design: Exploratory, controlled before-and-after study. During a 15-month baseline, usual care was carried out in two areas. During the following 15-months, usual care continued in the control area, while residential care home staff implemented Liverpool Care Pathway for the Dying Patient use in the intervention area. The intervention was evaluated by family members completing retrospective symptom assessments after the patient’s death, using the Edmonton Symptom Assessment System and Views of Informal Carers – Evaluation of Services. Settings/participants: Patients who died at all 19 residential care homes in one municipality in Sweden. Results: Shortness of breath (estimate = −2.46; 95% confidence interval = −4.43 to −0.49) and nausea (estimate = −1.83; 95% confidence interval = −3.12 to −0.54) were significantly reduced in Edmonton Symptom Assessment System in patients in the intervention compared to the control area. A statistically significant improvement in shortness of breath was also found on the Views of Informal Carers – Evaluation of Services item (estimate = −0.47; 95% confidence interval = −0.85 to −0.08). Conclusion: When implemented with adequate staff training and support, the Liverpool Care Pathway for the Dying Patient may be a useful tool for providing end-of-life care of elderly people at the end of life in non-cancer settings.

Occupational performance and strategies for managing daily life among the elderly with heart failure

Abstract Aim: The aim of this study was to describe experiences of limitations in occupational performance and strategies for managing daily activities among the elderly with chronic heart failure (CHF). Methods: Ten participants from primary healthcare with a confirmed diagnosis of CHF were interviewed. The interviews were analysed using qualitative content analysis. Results: The first theme, “Redefining an active life, aware of one’s impaired body”, was based on four sub-themes: realizing one’s limited activity ability; striving to preserve an active life; focusing on meaningful activities; and changing vs. not changing habits and roles. The second theme, “Planning activities and balancing the degree of effort”, was based on three sub-themes: limiting, organizing, and rationalizing activities; adjusting activities to today’s ability; and using technology and adapting the environment. Conclusions: Elderly people with CHF are struggling with an ongoing process of occupational adaptation due to periodical physical decline and fluctuating day-to-day ability. This highlights a need for information on strategies from a holistic perspective and client-centred occupational therapy interventions.

End-of-life care in residential care homes: a retrospective study of the perspectives of family members using the VOICES questionnaire

BACKGROUND In Europe, residential care homes (RCHs) are replacing hospitals as the place where death occurs, and they play an important role in end-of-life (EOL) care. OBJECTIVE The aim was to describe the quality of care during the last 3 months and last 3 days of life of those who died in RCHs as reported by family members. We also investigated whether there were differences in the EOL care of younger patients (<85 years) vs. the oldest old patients (≥85 years) as reported by family members. DESIGN A retrospective survey design. METHODS Deaths (n = 189) at 19 RCHs in one municipality in Sweden were included. Family members were sent the VOICES questionnaire 1 month after their elderly relative had died. Descriptive statistics were used. RESULTS In the last 3 days before death, most family members reported there was enough help with nursing (93%) and personal care (78.5%). Among the family members, 86% were told that the resident was likely to die shortly. Most (94.1%) of residents were reported to have died at their preferred place. No significant difference was found between age groups. Family members also reported that about half of the elderly had pain (46.5%) and 86.4% received treatment; 55.9% had breathlessness and 39.7% received treatment. Breathlessness was significantly (p = 0.01) more common in the younger group, and they were treated more often (p = 0.006) than the oldest old. CONCLUSION This study revealed an overall positive picture of personal and nursing care and communication. These findings indicate that the quality of EOL care at RCHs is high. Inadequate management was found for symptom relief the last days of life. This suggests that this subject merits further attention by care professionals. To achieve better quality of EOL care at RCHs, we emphasise the importance of systematically working to improve symptom relief.

Sexual Knowledge in Patients With a Myocardial Infarction and Their Partners

Background:Sexual health and sexual activity are important elements of an individual’s well-being. For couples, this topic is often affected after a myocardial infarction (MI). It has become increasingly clear that, after an MI, patients are insufficiently educated on how to resume normal sexual activity. However, sufficient data on the general knowledge that patients and partners have about sexual activity and MI are lacking. Objective:The aims of this study were to explore and compare patients’ and partners’ sexual knowledge 1 month after a first MI and 1 year after the event and to compare whether the individual knowledge had changed over time. A second aim was to investigate whether patients and their partners report receiving information about sexual health and sexual activity from healthcare professionals during the first year after the event and how this information was perceived. Subjects and Methods:This descriptive, comparative survey study enrolled participants from 13 Swedish hospitals in 2007–2009. A total of 115 patients with a first MI and their partners answered the Sex After MI Knowledge Test questionnaire 1 month after the MI and 1 year after the event. Correct responses generated a maximum score of 75. Results:Only 41% of patients and 31% of partners stated that they had received information on sex and relationships at the 1 year follow-up. The patients scored 51 ± 10 on the Sex After MI Knowledge Test at inclusion into the study, compared with the 52 ± 10 score for the partners. At the 1-year follow-up, the patients’ knowledge had significantly increased to a score of 55 ± 7, but the partners’ knowledge did not significantly change (53 ± 10). Conclusions:First MI patients and their partners reported receiving limited information about sexual issues during the cardiac rehabilitation and had limited knowledge about sexual health and sexual activity.