The correlation of standard heart failure assessment and palliative care questionnaires in a multidisciplinary heart failure clinic

Context

Heart failure (HF) is a leading cause of death and disability, and despite optimal care, patients may eventually require palliative care. Little is known about how palliative care questionnaires (the Edmonton Symptom Assessment Scale [ESAS] and the Palliative Performance Scale [PPS]) perform compared with HF assessment using the New York Heart Association (NYHA) functional class and the Kansas City Cardiomyopathy Questionnaire (KCCQ).

Objectives

To assess the utility of a palliative care questionnaire in patients with HF.

Methods

One hundred and five patients (mean age = 65 years, 76% male, mean ejection fraction = 28%) followed in an HF clinic were surveyed with the NYHA, PPS, ESAS, and KCCQ.

Results

The PPS and ESAS were each correlated to the NYHA class (P < 0.0001 for both) and the KCCQ score (PPS: R² = 0.57; ESAS: R² = −0.72; both P < 0.0001). There were 33 patients who either died (10 deaths) or were hospitalized (26 patients) for more than one year. In addition to age and gender, a higher (worse) ESAS score trended toward significance (P = 0.07) and a lower (worse) PPS was a significant (P = 0.04) predictor of all-cause hospitalization or death.

Conclusion

In a cohort of HF patients, we found a modest correlation with NYHA class and KCCQ assessment with the PPS and ESAS, two standard palliative care questionnaires. Given the difficulty in identifying patients with HF eligible for palliative or hospice care, these tools may be of use in clinical practice.     

Living with severe chronic heart failure in palliative advanced home care.

BACKGROUND: Living with severe chronic heart failure (CHF) in palliative care has been little studied. AIM: The aim of this study is to illuminate meaning of living with severe CHF in palliative advanced home care through patients' narratives. METHODS: Narrative interviews were conducted with 4 patients, tape-recorded and transcribed verbatim. A phenomenological-hermeneutic method was used to interpret the text. RESULTS: 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. CONCLUSIONS: 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.     

Non-cancer palliative care: Experience and challenges faced in a palliative program from Singapore

Abstract

Palliative care espouses a holistic and multidisciplinary approach applicable to stages of disease in response to needs together with disease-modifying treatments, regardless of diagnosis. While cancer is the single most common killer disease, responsible for 28% of deaths in Singapore in 2007, non-cancer diseases accounted for more than twice that at 66%. Integrating palliative care for patients suffering from end-organ failure would balance curative measures with quality of life for our frailest patients, and support these patients during their final journey. This is only possible with close cooperation between palliative care teams and organ specialists. We report our experience and insights in managing non-cancer cases in an integrative model of care over the past 4 years. We find that most families and patients suffering from end stage non-cancer conditions are able to accept palliative care after honest communication and are able to talk about end-of-life plans. The majority of patients can achieve satisfactory symptom control, be cared for, and die in a place of their choice with the support of a palliative home care program without the need for frequent hospitalizations. Sustaining this model of care requires diligence, collaboration, and upgrading of skills based on coordinated resource allocation.     

慢性心力衰竭患者居家护理中的家属护理要求分析

目的观察分析慢性心力衰竭家属的护理要求及相应的护理对策。方法选取该院2013年1月至2014年6月收治的50例慢性心力衰竭患者作为研究对象,通过问卷调查以及面对面交流的方法对患者家属的健康教育需求进行总结分析,并探讨有效的护理对策。结果慢性心力衰竭患者照顾者的健康需求在运动、饮食指导、药物依从性以及心理护理方面存在一定的缺陷,而其主要的护理需求集中在治疗效果以及药物的注意事项方面,经过积极的护理干预后,患者家属对护理的满意度达到100%。结论慢性心力衰竭患者家属的护理需求主要集中在患者的治疗效果以及药物的依从性方面,需要给予针对性的护理干预。     

Comparisons of the cost-effectiveness among hospital chronic care, nursing home placement, home nursing care and family care for severe stroke patients

AIM: This study compared the cost and effectiveness of long-term institutional care and home care for stroke patients with severe physical disabilities. BACKGROUND: Whether home care is more economical or effective than institutional care for patients with chronic illnesses remains controversial when the cost of family labour is considered. Thus, decisions concerning the appropriate type of care setting for patients with severe chronic illness remain difficult. METHODS: From November 1995 to March 1996, 313 hospitalized stroke patients with severe physical disabilities treated at one of five hospitals in the Taipei metropolitan area were followed from the day of hospital discharge until the third month after discharge. These 313 patients were divided into four groups as follows: (1) 106 who were admitted to a chronic care unit in a hospital, (2) 60 who were admitted to nursing homes, (3) 60 who received professional home nursing care and (4) 87 who returned home without receiving professional care. The change of physical functional status in the patient was examined as the difference between activities of daily living (ADL) scores measured at discharge and at the end of the third month after discharge. RESULTS: Information on family costs for caregiving, including pay for long-term services utilized, labour costs for caregiving and out-of-pocket expenditures for miscellaneous materials was obtained during a weekly telephone interview. The results indicated that caring for patients in their own homes was not only more expensive but was also less effective in improving ADL scores than caring for patients in nursing homes and in chronic care units of hospitals. CONCLUSIONS: The results suggest that caring for patients with severe physical disabilities in institutions is more appropriate than caring of them at home.     

协同护理模式对慢性心力衰竭病人自我护理能力的影响

[目的]探讨协同护理模式对慢性心力衰竭病人自我护理能力的影响。[方法]采用随机数字表法将96例慢性心力衰竭病人分为观察组和对照组各48例,对照组予常规的护理模式,包括饮食、休息与运动、用药指导和预防感染等措施,观察组在常规护理的基础上运用协同护理模式,采用自我护理能力测定量表(ESCA)对两组病人干预前后的自我护理能力进行评价并比较。[结果]干预后3个月观察组病人的自我护理技能、自我责任感、自我概念及健康知识水平得分显著高于对照组(P0.01)。[结论]协同护理模式以其独特的理念促进病人及家属共同参与护理,提供优质、高效护理,帮助解决病人的各种健康问题,以达到提高病人自我护理能力的目的。     

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.     

对慢性肺疾病或心力衰竭病人实施家庭远程监护的效果研究

[目的]观察慢性肺疾病或心力衰竭病人实施家庭远程监护的可行性。[方法]随机对照观察符合条件的58例诊断为心力衰竭（HF）或慢性肺疾病（CLD）居家病人。观察组30例,病人通过远程监护随访,日常传送病人家庭自我测量的临床参数（呼吸频率、心率、血压、氧饱和度、体重、体温和健康问卷调查）;对照组28例,接受常规护理。主要结局为12个月住院次数、住院时间、其他医疗资源利用和死亡率。[结果]观察组26例病人随访1年,17例至少住院1次,对照组25例病人随访1年,22例至少住院1次,差异有统计学意义（P=0.033）;观察组住院天数9.0 d±4.3 d,对照组为11.2 d±10.7 d,差异无统计学意义（P=0.891）;观察组电话联系较对照组多（22.6次±16.1次、8.6次±7.2次,P=0.001）,而家庭护士访查观察组少于对照组（15.3次±11.6次、25.4次±26.3次,P=0.360）。[结论]对 HF 或 CLD 病人实施家庭远程监护,显著减少病人住院次数,降低住院天数;家庭远程监护可能是病情稳定老年慢性疾病病人的合理选择。     

护理人文关怀在慢性心力衰竭患者中的应用

目的：评价护理人文关怀在慢性心力衰竭患者中的应用效果。方法：将2008年住院的260例慢性心力衰竭患者实施人文关怀,与实施人文关怀护理前的258例患者满意度调查表进行比较。结果：患者对护理的满意度从89％提高到99％,护理纠纷为0,收到锦旗8面。结论：对慢性心力衰竭患者实施人文关怀护理可提高满意度,减少护患纠纷,提高患者的自信和自我价值感,减少不良心理,提高了其生存质量。     

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 patient's way of life carries great weight. On one hand nurses live out this value, facilitating for the patients to live their everyday life 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.     

Esthetic abilities: a way to describe abilities of expert nurses in palliative home care

Aim. The aim of this paper is to focus on the abilities needed to create the caring relation in palliative home care and to find ways to describe these abilities and skills from an esthetic perspective. Background. Nurses in Palliative home care have to create a functioning relationship between themselves the patient and the patient's next of kin, this puts special demands on the nurse. A number of abilities, such as creativity, intuition, empathy and self‐knowledge are mentioned in literature related to the caring relation. Many nursing theorists have referred to the art and esthetic of nursing when trying to describe these abilities. Methods. Data were collected using semi‐structured interviews with eight expert nurses in palliative home care. The transcribed interviews were analysed using qualitative content analyses. Findings. Three main categories where found: The will to do good, Knowledge and Perceptiveness. Subcategories that can be seen as abilities where found in the main categories knowledge and perceptiveness. Conclusions. The main categories can be seen as expressions for abilities, personal qualities and skills needed to create the caring relation in palliative home care. We found interesting connections between the three main categories and the concepts of esthetics, ethics and science. We also found that nurses develop in a way, i.e. similar to an artist. Relevance to clinical practice. The concepts brought forward in this paper could be used in clinical supervision and education as well as in clinical practice. If nurses think about the three aspects: Knowledge, the will to do good and perceptiveness, the chance for a positive relation between the nurse and the patient, and the patient's next of kin might increase. One could speculate that perceptiveness is a vital ability in order to achieve the expert level of nursing and that this perspective should be taken in consideration when recruiting nurses and in curriculum development.     

Team type,team maturity and team effectiveness in specialist palliative home care: an exploratory questionnaire study

ABSTRACT

To meet complex needs in persons and families within specialist palliative care, care team members are expected to work together in performing a comprehensive assessment of patient needs. Team type (how integrated team members work) and team maturity (group development) have been identified as components in team effectiveness and productivity. The aim of the study reported in this paper was to identify team types in specialist palliative care in Sweden, and to explore associations between team type, team maturity and team effectiveness in home care teams. A national web-based survey of team types, based on Thylefors questionnaire, and a survey of healthcare professionals using the Group Development Questionnaire (GDQ-SE3) to assess team developmental phase, effectiveness and productivity were used in an exploratory cross-sectional design. The participants were: Specialist palliative care teams in Sweden registered in the Palliative Care Directory (n = 77), and members of 11 specialist palliative home care teams. Teams comprised physicians, registered nurses, social workers, physiotherapists and/or occupational therapists, full-or part-time. Our national web survey results showed that the 77 investigated teams had existed from 7 to 21 years, were foremost of medium size and functioned as inter- or transprofessional teams. Results from the 61 HCPs, representing 11 teams, indicated that more mature teams tended to work in an integrated manner, rather than in parallel. The effectiveness ratio varied from 52% to 86% in teams. Recommendations arising from our findings include the need for clarification of team goals and professional roles together with prioritizing the development of desirable psychosocial traits and team processes in clinical settings.     

The complex nature of informal care in home-based heart failure management

Title. The complex nature of informal care in home‐based heart failure management. Aim. This paper is a report of a study to examine the complexities of informal caregiving for people with chronic heart failure. Background. Little is known of the activities involved and underlying informal care. Heart failure is a common and burdensome condition in which carers play an important management role. Method. Semi‐structured interviews were carried out with 30 informal carers nominated by patients with mild‐to‐moderate heart failure (24 spouses, four children, one sibling and one neighbour). Interviews examined knowledge of heart failure, its effects, reported management practices and concerns, decision making and support. The data were collected in 2001. Findings. The management of heart failure was a shared and ongoing responsibility between the carer and patient. Carers’ clinical knowledge of the condition and management was often limited, but they developed extensive knowledge of its personal effects on the patient. Invisible care activities included monitoring signs of symptom exacerbation and energy boundaries against perceived current and future demands and priorities. Visible care activities included medication management, dressing, bathing and help‐seeking. Carers responded to patients’ capacities, and adopted philosophies that sought to foster independence while facilitating as normal a life for the patient as was possible and safe. Conclusion.  Interventions for informal carers around effective chronic heart failure management should address both visible and invisible informal caring. Future research is needed to develop interventions with carers to improve quality of care, reduce costs and improve patient quality of life. More research is needed to explore the complexities of lay caregiving and to explore the invisible dimensions of informal care further.     

Being a palliative care nurse in an academic hospital: a qualitative study about nurses' perceptions of palliative care nursing

The original philosophy of palliative care emphasizes the importance of the integration of compassion and medical science. The meaning palliative care nurses assign to their relationships with patients has been described in several studies. This qualitative research was undertaken in order to elicit the way nurses working on a palliative care ward in an academic hospital perceive their role and gain insight into the problems they encounter. The findings present two different perceptions held by nurses about the nature of their work. The first, the more prominent, is 'striving to adopt a well-organized and purposeful approach as a nurse on an academic ward'; the second is 'striving to enhance the well-being of the patient'. Nurses should be supported in the development of their palliative care approach and be assisted in reflecting on their practice in terms of a model of 'reflective practice' and in the development of 'moral imagination'.