Advanced Palliative Home Care Research Articles

Effect of Integrated, Person-Centred Palliative Advanced Home and Heart Failure Care on NT-proBNP Levels: A Substudy of the PREFER Study

Objective: In 2012, we initiated a new person-centred model, integrated Palliative advanced home caRE and heart FailurE caRe (PREFER), to integrate specialised palliative home care with heart failure care. Natriuretic peptide-guided treatment is valuable for younger patients (age Design: A pre-specified, exploratory substudy, analysed within the prospective, randomised PREFER study, which had an open, non-blinded design. Participants: Patients in palliative care with chronic heart failure, New York Heart Association class III-IV were randomly assigned to an intervention (n = 36; 26 males, 10 females, mean age: 81.9 years) or control group (n = 36; 25 males, 11 females, mean age:76.5 years). The intervention group received the PREFER intervention for 6 months. The control group received care as usual at a primary health care centre or heart failure clinic at the hospital. NT-proBNP was measured at the start and end of study. Results: Plasma levels of NT-proBNP differed significantly between groups at baseline. By the end of the study, no significant difference was found between the groups. The mean value for NT-proBNP decreased by 35% in the PREFER group but was not statistically significant (P = 0.074); NT-proBNP increased 4% in the control group. Conclusions: We found no statistically significant reductions of NT-proBNP levels neither between nor within the PREFER and the control group at the end of the study.

The theory of a co-creative process in advanced palliative home care nursing encounters: A qualitative deductive approach over time.

Aims and objectivesThe aim of this study was to test the theoretical conceptualization of the co‐creative process in home care nursing encounters over time.Method and designThis was a multiple case study with a deductive analysis of qualitative data over time, using interviews and observations collected from three cases.ResultsThe co‐creative process was complex and contained main, sub‐ and micro‐processes. Time was important and valuable, giving the patient and relatives space to adjust the process to their own pace. Some processes were worked on more intensively in accordance with the patients’ and relatives’ needs, and these are considered the main‐process. The further developed theory of the co‐creative process and its main, sub‐ and microprocesses can be understood as a concretization of how good nursing care can be performed within caring relationships in the context of advanced palliative home care.

High Degree of Satisfaction With the Support Given by Multidisciplinary Palliative Home Care Teams in the County of Stockholm.

At the initiative of Stockholm County Council, a survey was performed by an independent investigator to evaluate satisfaction among patients and their families with the advanced palliative home care teams in the county of Stockholm. The survey was performed in 2010 and compiled in 2011. The aim was to evaluate the impressions of patients and their families of the support given by the palliative home care teams in the Stockholm area and to evaluate the management of symptom control, availability, continuity, confidence, and quality of communication. A questionnaire was sent to 1424 patients and 329 family members to evaluate the views of the users of the home care service. The response rate was 78% among both patients and their families or other caregivers. The proportion of positive and very positive responses among those who needed the specific help of the team was as follows: information about the service 86%, availability around the clock 96%, influence and feeling of shared responsibility 88%, and possibility of family members to have supportive discussions 95%. Eighty-three percent of patients experienced total pain relief and 99% total or partial relief. The corresponding figures for anxiety were 77% and 97% and for other symptom reliefs 79% and 98%, respectively. These figures were comparable to a smaller survey in 2014 and were high compared to the results from other medical services using similar questionnaires. Significance of the Results: A high quality of care is possible to achieve within palliative home care services.

Vitamin D supplementation to palliative cancer patients: protocol of a double-blind, randomised controlled trial ‘Palliative-D’

BackgroundAccording to a small pilot study on palliative cancer patients at our ward, vitamin D supplementation had beneficial effects on pain (measured as opioid consumption), infections and quality of life...

Patients’ experiences of person-centred integrated heart failure care and palliative care at home: an interview study

ObjectivesPatients with severe heart failure (HF) suffer from a high symptom burden and high mortality. European and Swedish guidelines for HF care recommend palliative care for these patients. Different models...

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.

Narratives of a man with severe chronic heart failure and his wife in palliative advanced home care over a 4.5-year period.

The aim of this paper is to illuminate meanings of living the 'ups and downs', through the narratives of one man with severe, chronic heart failure (CHF) and his wife in palliative advanced home care (PAHC). Narrative interviews were conducted over a 4.5-year period and a phenomenological-hermeneutic method was used to interpret the text. The analysis resulted in one theme and four sub-themes. Meanings of living the 'ups and downs' is symbolically understood as being captive in a roller-coaster ride, side by side. In togetherness one helps one another to integrate the illness into everyday life.When, the inevitable 'downs' come one alleviates them as much as possible and/or just endures them waiting to see if one outlives them. During the 'ups' one seizes every opportunity to live, doing the things one likes and discovering new possibilities in life. Sharing the safety belt on the 'roller coaster', offered by the PAHC team, evokes feelings of security.However, the safety belt is adjusted to the man with severe CHF leaving the wife without comfort and at times uncertain, especially in the deepest 'downs'. Our results indicate that the importance of medical treatment may increase over time. The ability to recognize symptoms and signs of deterioration may be facilitated by a trusted PAHC team's repeated questions about the condition. Furthermore it is important to offer support directly to the close relatives.

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. From January 2011 to October 2012, 36 (26 males, 10 females, mean age 81.9 years) patients with chronic heart failure (NYHA class III-IV) were randomized to PREFER and 36 (25 males, 11 females, mean age 76.6 years) to the control group at a single centre. Prospective assessments were made at 1, 3, and 6 months using the Edmonton Symptom Assessment Scale, Euro Qol, Kansas City Cardiomyopathy Questionnaire, and rehospitalizations. Between-group analysis revealed that patients receiving PREFER had improved HRQL compared with controls (57.6 ± 19.2 vs. 48.5 ± 24.4, age-adjusted P-value = 0.05). Within-group analysis revealed a 26% improvement in the PREFER group for HRQL (P = 0.046) compared with 3% (P = 0.82) in the control group. Nausea was improved in the PREFER group (2.4 ± 2.7 vs. 1.7 ± 1.7, P = 0.02), and total symptom burden, self-efficacy, and quality of life improved by 18% (P = 0.035), 17% (P = 0.041), and 24% (P = 0.047), respectively. NYHA class improved in 11 of the 28 (39%) PREFER patients compared with 3 of the 29 (10%) control patients (P = 0.015). Fifteen rehospitalizations (103 days) occurred in the PREFER group, compared with 53 (305 days) in the control group. Person-centred care combined with active heart failure and palliative care at home has the potential to improve quality of life and morbidity substantially in patients with severe chronic heart failure. NCT01304381.

A separate structured conversation with relatives of patients enrolled for advanced palliative home care: A care development project

One prerequisite for palliative home care is the relatives' participation in the care. The relatives' situation in palliative home care is unique, as they support the sick person and also have a great need for support themselves. The aim of this care development project was to develop and implement separate structured conversations (SSC) with relatives of patients of an advanced palliative home care team (APHCT). During the project, 61 conversations were held and 55 relatives answered a questionnaire. The questionnaire, eight semistructured interviews with relatives, and three focus-group discussions with nurses constitute the material for the evaluation. Relatives have difficulties separating the SSC from the APHCT's care as a whole. They underline that the SSC was a part of an ongoing process. They also emphasize the value of having a conversation of their own in which the patient was absent, and in which the focus was on the relative's situation. For some, the conversation took place at the APHCT premises. The advantages of that were more privacy and the opportunity to walk around the inpatient palliative care units. The main problem during the project was conducting the SSC soon after the patient was enrolled with the APHCT. Routinely offering one separate structured conversation with relatives with the intention of answering questions, talking about their willingness to provide care in the home, and mapping out their situation and social network, is a way to support both the relatives and the patients. The common structure of the conversations facilitated the assessment of the relatives' situation but did not hinder individualization according to the relatives' needs. The assumption is that all relatives should be offered a conversation.

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

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. 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. 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. 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.

Protection against perceptions of powerlessness and helplessness during palliative care: The family members' perspective

Resilience in relation to coping with stress, loss, and bereavement has recently received increased attention. The aim of the current study was to describe aspects that are experienced as a protection against powerlessness and/or helplessness during advanced palliative home care (APHC) or as a help when coping with such perceptions. Both family members during ongoing APHC and family members 3-9 months after the patient's death responded (in total, N = 233; response rate 72%) to a postal questionnaire with mainly open-ended questions. The text responses were analyzed using Manifest Content Analysis. Protection against powerlessness and helplessness had been facilitated by a stable patient condition, the patient coping well, a trusting relationship with the patient, practical and emotional support from family and friends, access to palliative expertise, and staff support that was both individually-focused and cooperative. Other aspects that had helped or protected family members against powerlessness and helplessness were a belief that they had their own reliable knowledge to manage the difficult situation, talking to someone, doing good for the patient, distracting activities, acceptance, meaning and hope, and an inner feeling of security. The findings are discussed in relation to existential psychology, the dual process model of coping with bereavement, and repressive coping. Clinical implications are suggested.

Symptoms, care needs and diagnosis in palliative cancer patients in acute care hospitals: A 5-year follow-up survey

Introduction. Palliative cancer care in acute hospitals is scarcely studied. We therefore described and compared symptoms, care needs and types of cancer sites in 2002 compared to 2007 and analysed the relationships between these factors. Methods. The study was population-based with a cross-sectional design and was carried out in medical, surgical and oncology wards in two acute care hospitals with no advanced palliative home care service. In 2002, 82 one-day-inventories were done (1 352 patients) compared to 142 one-day-inventories in 2007 (2 972 patients). Symptoms, care needs and cancer site were registered according to a questionnaire. Multiple logistic regression models were used to analyse associations between symptoms, care needs and cancer site. Results. The proportion of palliative cancer patients had decreased during a five year period (14% vs. 11%, p<0.01). The patients were older in 2007 (74 vs. 70 years, p<0.001) and had more symptoms and care needs per patient (2.6 vs. 1.6, p<0.001). The most common symptoms were pain and deterioration and the most common cancer sites were prostate and colorectal cancer in both samples. Associations between symptoms, care needs and cancer site were mostly weak. Deterioration was associated with colorectal cancer, whereas pain was not associated with any specific cancer site. In haematological malignancies there was a high occurrence of infections and a high need of blood transfusions and infusions. Stomach/oesophagus cancers were significantly associated with nausea, nutritional problems and need of infusions while unknown primary malignancies were associated with abdominal surgery and infusions. Discussion. Although we do not know all the causes for hospitalization, this study indicates that more focus should be on the symptoms instead of the specific cancer diagnosis. The findings also indicate that many palliative cancer patients’ problems would be suitable for advanced palliative home care instead of acute hospital care.

Narratives of a man with severe chronic heart failure and his wife in palliative advanced home care over a 4.5-year period

The aim of this paper is to illuminate meanings of living the ‘ups and downs’, through the narratives of one man with severe, chronic heart failure (CHF) and his wife in palliative advanced home care (PAHC). Narrative interviews were conducted over a 4.5-year period and a phenomenological–hermeneutic method was used to interpret the text. The analysis resulted in one theme and four sub-themes. Meanings of living the ‘ups and downs’ is symbolically understood as being captive in a roller-coaster ride, side by side. In togetherness one helps one another to integrate the illness into everyday life. When, the inevitable ‘downs’ come one alleviates them as much as possible and/or just endures them waiting to see if one outlives them. During the ‘ups’ one seizes every opportunity to live, doing the things one likes and discovering new possibilities in life. Sharing the safety belt on the ‘roller coaster’, offered by the PAHC team, evokes feelings of security. However, the safety belt is adjusted to the man with severe CHF leaving the wife without comfort and at times uncertain, especially in the deepest ‘downs’. Our results indicate that the importance of medical treatment may increase over time.The ability to recognize symptoms and signs of deterioration may be facilitated by a trusted PAHC team’s repeated questions about the condition. Furthermore it is important to offer support directly to the close relatives.

Being a close relative of a person with severe, chronic heart failure in palliative advanced home care – a comfort but also a strain

Within previous research on family care of terminally ill people, studies have only rarely been carried out concerning heart failure care. This study aims to illuminate meanings of being a close relative of a person with severe, chronic heart failure (CHF) in palliative advanced home care (PAHC). Narrative interviews were conducted with three close relatives, tape-recorded, transcribed verbatim and a phenomenological-hermeneutic method was used to interpret the text. Meanings of being a close relative is to follow the life-threatening ups and downs, the person with CHF is going through. This means being on primary call, always on standby to mediate security and pleasure. In the deepest downs it is also to call for the back-up call i.e. the PAHC team, trusting their ability to show up on time to alleviate in the worst downs i.e. ease suffering. This study reveals that to be the close relative that the ill person is dependent on 24 hours a day is both a comfort and a strain.

Men with advanced prostate cancer described “living with bodily problems” in terms of cyclical movements between being well and being ill

Lindqvist O, Widmark A, Rasmussen BH. Reclaiming wellness—living with bodily problems, as narrated by men with advanced prostate cancer. Cancer Nurs 2006;29:327–37. [OpenUrl][1][CrossRef][2][PubMed][3][Web of Science][4] Q What are the meanings...

Living with Severe Chronic Heart Failure in Palliative Advanced Home Care

Living with severe chronic heart failure (CHF) in palliative care has been little studied. The aim of this study is to illuminate meaning of living with severe CHF in palliative advanced home care through patients' narratives. Narrative interviews were conducted with 4 patients, tape-recorded and transcribed verbatim. A phenomenological-hermeneutic method was used to interpret the text. Meaning of living with severe CHF in palliative advanced home care emerged as 'knocking on death's door' although surviving. The course of the illness forces one to live a 'roller coaster life,' with an ongoing oscillation between ups and downs. Making it through the downs breeds a kind of confidence in one's ability to survive and the will to live is strong. Being offered a safety belt in the 'roller coaster' by the palliative advanced home care team evokes feelings of security. Meaning of living with severe CHF in palliative advanced home care is on one hand, being aware of one's imminent death, on the other hand, making it through the downs i.e. surviving life-threatening conditions, breed confidence in also surviving the current down. Being constructively dependent on palliative advanced home care facilitates everyday life at home.

What to do when ‘there is nothing more to do’? A study within a salutogenic framework of family members' experience of palliative home care staff

The aim of this study was to develop a theoretical framework of family members' experience of palliative home care staff based on a secondary analysis of four previous studies. A salutogenic framework was used, i.e. with the origin of health in focus. Data had been collected (semi-structured tape-recorded interviews and postal questionnaires with open-ended questions) from 469 family members of mainly cancer patients referred to advanced palliative home care. Walker and Avant's strategies for theory construction were used. The secondary analysis generated three theoretical blocks: (1) general components of staff input (including five generalized resistance resources (GRRs): competence, support, spectrum of services, continuity, and accessibility); (2) specific interactions with staff (including two GRRs: being in the centre and sharing caring); (3) emotional and existential consequences of staff support (including six health-disease continuums: security-insecurity, hope-hopelessness, congruent inner reality-chaos, togetherness-isolation, self-transcendence-feelings of insufficiency and retained everyday life-disrupted everyday life). It seems important that all three aspects of family members' experience of palliative care staff are to be considered in evaluations of palliative care, in goal-setting and in teaching role models. The study is specific to the Swedish model of palliative home care and replication of the work in other countries is recommended.

Next of kin's experience of powerlessness and helplessness in palliative home care.

Powerlessness and helplessness have been very little studied. The aims of this study were (1) to describe what characterise such experiences and the meaning of them to next of kin of cancer patients in advanced palliative home care and (2) to make quantifications. The study design was cross-sectional and targeted next of kin during ongoing palliative home care and next of kin of patients who had died 3-9 months earlier; 233 next of kin responded (response rate 72%) to a postal questionnaire with both Likert-type and open-ended questions. The text responses were analysed with a combined qualitative and quantitative content analysis. Thirty-six percent of respondents stated that they had experienced powerlessness and/or helplessness every day or several times per week, whereas 33% had never had this experience during the palliative home care period. Powerlessness and helplessness concerned next of kin's perception of the patient's suffering, of the patient's fading away and the next of kin's own feelings of insufficiency and resulted in both physical and psychological symptoms, such as muscle tension, headache, loss of appetite, anxiety and depression. In addition, powerlessness and helplessness concerned also a deeper meaning with existential and social aspects, such as feelings of guilt, anger and loneliness. The main findings provide tools for the practitioner to identify situations contributing to next of kin's sense of powerlessness and helplessness. The findings are discussed in relation to the concepts of symptom control, communication of awareness and humans' search for action.

A comparison of patients dying at home and patients dying at a hospice: Sociodemographic factors and caregivers' experiences

The aim of this study was to investigate whether there were any differences between patients who died at home and patients who died at a hospice, that is, sociodemographic variables, the family caregivers' experiences of burden, and their opinion of reasons for hospice care. The study comprises a consecutive sample of family caregivers to adult patients: (I) who were cared for by the advanced palliative home care team (APHCT) and died at home, (II) who were cared for by the APHCT and died at the Hospice, (III) who were cared for and died at the Hospice in Uppsala during a period of one year. A questionnaire was mailed to caregivers and the medical records of all the patients were analyzed. The place of death differed significantly and varied according to gender and cohabitation status. Men died to a greater degree at home compared with women. The family caregivers' experiences of burden were moderate. Caregivers of patients who died at home thought that this care form has a more positive influence on the patients' quality of life than was the case in the other groups. They were also more satisfied with their own achievement. The caregivers' opinion of why patients needed hospice care was nearly the same in groups II + III, acutely developing symptoms being the most common reason. This study showed that women died to a lesser degree at home than men. The explanation for this is unknown and requires further investigation. It is important to establish whether female patients or male caregivers need another type of support than male patients or female caregivers, since the aim of palliative care is that every patient who wishes to die at home should have this wish fulfilled.

Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers.

It is increasingly common that cancer patients are cared for at home at the end of life, with help from advanced home care teams. This may have positive implications for cancer patients and their families, but it may also be burdensome to the family caregivers with implications for their health and well-being. This qualitative study was therefore initiated to prospectively explore how family caregivers reason about their expectations of providing end-of-life care at home for relatives with cancer, enrolled in advanced palliative home care units. Ten interviews were conducted with 11 family caregivers at enrollment to the home care unit. A form of constant comparative analysis was used to generate two main themes from the data. One theme concerned the role transition into becoming a family caregiver, whereas the other theme relates to the transition to a new life situation of the caregiver (him/herself). The family caregivers describe themselves as the persons primarily bearing responsibility and providing care for their dying relatives. They were found to have many concerns about their own situation, especially in regard to issues temporally after the death of the patient, but seemed to have few expected sources of support related to these concerns. Professional support is described as expected primarily for care-related tasks, although hopes may be expressed about support in other areas. The distinction between resources described as existing in theory and those used in practice also are apparent in analysis of the interviews. If home care is to be a positive alternative to hospital care, individual expectations should be considered when planning supportive care.