Terminally-ill people living alone without a caregiver: an Australian national scoping study of palliative care needs

Home-based palliative care services are facing increasing challenges in servicing the needs of clients who live alone and without a primary caregiver. The findings from the analysis of 721 services’ records from three Australian states, and feedback from health professionals in interviews and postal surveys, demonstrated that there were aspects of being on one’s own with a terminal illness and living at home that require a specialised approach and support. This study explored the issues of palliative care patients living alone, from a service provider perspective, and provided evidence-based information to assist with service planning. The study made recommendations to the Australian Department of Health and Ageing about services considered important in developing support structures for this growing population.

Palliative care phase : inter-rater reliability and acceptability in a national study

Background: The concept of palliative care consisting of five distinct, clinically meaningful, phases (stable, unstable, deteriorating, terminal and bereavement) was developed in Australia about 20 years ago and is used routinely for communicating clinical status, care planning, quality improvement and funding. Aim: To test the reliability and acceptability of revised definitions of Palliative Care Phase. Design: Multi-centre cross-sectional study involving pairs of clinicians independently rating patients according to revised definitions of Palliative Care Phase. Setting/participants: Clinicians from 10 Australian palliative care services, including 9 inpatient units and 1 mixed inpatient/community-based service. Results: A total of 102 nursing and medical clinicians participated, undertaking 595 paired assessments of 410 patients, of which 90.7% occurred within 2 h. Clinicians rated 54.8% of patients in the stable phase, 15.8% in the unstable phase, 20.8% in the deteriorating phase and 8.7% in the terminal phase. Overall agreement between clinicians’ rating of Palliative Care Phase was substantial (kappa = 0.67; 95% confidence interval = 0.61–0.70). A moderate level of inter-rater reliability was apparent across all participating sites. The results indicated that Palliative Care Phase was an acceptable measure, with no significant difficulties assigning patients to a Palliative Care Phase and a good fit between assessment of phase and the definition of that phase. The most difficult phase to distinguish from other phases was the deteriorating phase. Conclusion: Policy makers, funders and clinicians can be confident that Palliative Care Phase is a reliable and acceptable measure that can be used for care planning, quality improvement and funding purposes.

On resilience and acceptance in the transition to palliative care at the end of life

Specialist palliative care is a prominent and expanding site of health service delivery, providing highly specialised care to people at the end of life. Its focus on the delivery of specialised life-enhancing care stands in contrast to biomedicine's general tendency towards life-prolonging intervention. This philosophical departure from curative or life-prolonging care means that transitioning patients can be problematic, with recent work suggesting a wide range of potential emotional, communication and relational difficulties for patients, families and health professionals. Yet, we know little about terminally ill patients' lived experiences of this complex transition. Here, through interviews with 40 inpatients in the last few weeks of life, we explore their embodied and relational experiences of the transition to inpatient care, including their accounts of an ethic of resilience in pre-palliative care and an ethic of acceptance as they move towards specialist palliative care. Exploring the relationship between resilience and acceptance reveals the opportunities, as well as the limitations, embedded in the normative constructs that inflect individual experience of this transition. This highlights a contradictory dynamic whereby participants' experiences were characterised by talk of initiating change, while also acquiescing to the terminal progression of their illness.

Improving national hospice/palliative care service symptom outcomes systematically through point-of-care data collection, structured feedback and benchmarking

PURPOSE Every health care sector including hospice/palliative care needs to systematically improve services using patient-defined outcomes. Data from the national Australian Palliative Care Outcomes Collaboration aims to define whether hospice/palliative care patients' outcomes and the consistency of these outcomes have improved in the last 3 years. METHODS Data were analysed by clinical phase (stable, unstable, deteriorating, terminal). Patient-level data included the Symptom Assessment Scale and the Palliative Care Problem Severity Score. Nationally collected point-of-care data were anchored for the period July-December 2008 and subsequently compared to this baseline in six 6-month reporting cycles for all services that submitted data in every time period (n = 30) using individual longitudinal multi-level random coefficient models. RESULTS Data were analysed for 19,747 patients (46 % female; 85 % cancer; 27,928 episodes of care; 65,463 phases). There were significant improvements across all domains (symptom control, family care, psychological and spiritual care) except pain. Simultaneously, the interquartile ranges decreased, jointly indicating that better and more consistent patient outcomes were being achieved. CONCLUSION These are the first national hospice/palliative care symptom control performance data to demonstrate improvements in clinical outcomes at a service level as a result of routine data collection and systematic feedback.

Estatuto antropológico de la enfermedad y el dolor en el enfermo terminal

Resumen: Los conceptos de dolor, enfermedad y enfermedad terminal exceden plenamente el ámbito meramente biológico y solo pueden abordarse acabadamente desde una perspectiva hilemorfista de persona humana. El enfoque integral de estos conceptos permite descubrir un significado antropológico de los mismos. Su comprensión adecuada constituye un imperativo moral en el cuidado del paciente terminal. En este sentido, es posible rescatar el valor de los cuidados paliativos como una modalidad de atención integral del paciente. En este contexto surge el proyecto de la Casa de la Bondad Salta, que pertenece a la Fundación Manos Abiertas. La Casa de la Bondad tiene como objetivo implementar cuidados paliativos a enfermos terminales. Se parte de la necesidad de realizar un abordaje integral del enfermo desde un enfoque transdisciplinar.

Diagnosis of invasive candidiasis by enzyme-linked immunosorbent assay using the N-terminal fragment of Candida albicans hyphal wall protein I

Background: The diagnosis of invasive candidiasis is difficult because there are no specific clinical manifestations of the disease and colonization and infection are difficult to distinguish. In the last decade, much effort has been made to develop reliable tests for rapid diagnosis of invasive candidiasis, but none of them have found widespread clinical use. Results: Antibodies against a recombinant N-terminal fragment of the Candida albicans germ tube-specific antigen hyphal wall protein 1 (Hwp1) generated in Escherichia coli were detected by both immunoblotting and ELISA tests in a group of 36 hematological or Intensive Care Unit patients with invasive candidiasis and in a group of 45 control patients at high risk for the mycosis who did not have clinical or microbiological data to document invasive candidiasis. Results were compared with an immunofluorescence test to detect antibodies to C. albicans germ tubes (CAGT). The sensitivity, specificity, positive and negative predictive values of a diagnostic test based on the detection of antibodies against the N-terminal fragment of Hwp1 by immunoblotting were 27.8 %, 95.6 %, 83.3 % and 62.3 %, respectively. Detection of antibodies to the N-terminal fragment of Hwp1 by ELISA increased the sensitivity (88.9 %) and the negative predictive value (90.2 %) but slightly decreased the specificity (82.6 %) and positive predictive values (80 %). The kinetics of antibody response to the N-terminal fragment of Hwp1 by ELISA was very similar to that observed by detecting antibodies to CAGT. Conclusion: An ELISA test to detect antibodies against a recombinant N-terminal fragment of the C. albicans germ tube cell wall antigen Hwp1 allows the diagnosis of invasive candidiasis with similar results to those obtained by detecting antibodies to CAGT but without the need of treating the sera to adsorb the antibodies against the cell wall surface of the blastospore.

Guidelines on artificial nutrition versus hydration in terminal cancer patients

Whether a terminally ill cancer patient should be actively fed or simply hydrated through subcutaneous or intravenous infusion of isotonic fluids is a matter of ongoing controversy among clinicians involved in the care of these patients. Under the auspices of the European Association for Palliative Care, a committee of experts developed guidelines to help clinicians make a reasonable decision on what type of nutritional support should be provided on a case-by-case basis. It was acknowledged that part of the controversy related to the definition of the terminal cancer patient, since this is a heterogeneous group of patients with different needs, expectations, and potential for a medical intervention. A major difficulty is the prediction of life expectancy and the patient's likely response to vigorous nutritional support. In an attempt to reach a decision on the type of treatment support (artificial nutrition vs. hydration) which would best meet the needs and expectations of the patient, we propose a three-step process: Step I: define the eight key elements necessary to reach a decision: Step II: make the decision; and Step III: reevaluate the patient and the proposed treatment at specified intervals. Step I involves assessing the patient concerning the following: 1) oncological/clinical condition; 2) symptoms; 3) expected length of survival; 4) hydration and nutritional status; 5) spontaneous or voluntary nutrient intake; 6) psychological profile; 7) gut function and potential route of administration; and 8) need for special services based on type of nutritional support prescribed. Step II involves the overall assessment of pros and cons, based on information determined in Step I, in order to reach an appropriate decision based on a well-defined end point (i.e. improvement of quality of life; maintaining patient survival; attaining rehydration). Step III involves the periodic reevaluation of the decision made in Step II based on the proposed goal and the attained result.

Refractory cachexia and truth-telling about terminal prognosis; A qualitative study

The purpose of this paper is to examine the consequences that medical practitioners’ decisions about whether or not to be candid about terminal prognosis have for those suffering from refractory cachexia and their families. It presents the findings of a qualitative study which used focus groups and semi-structured interviews of a volunteer sample of doctors, nurses and dieticians in a cancer centre of a large teaching hospital in Northern Ireland. Respondents reported that some physicians tended to avoid discussing terminal prognosis in a direct manner with their patients. Nurses and dieticians tended to be reluctant to engage in conversations about weight loss with patients with cachexia. One of the reasons they reported for their lack of acknowledgement of weight loss concerned the close association between refractory cachexia and terminal prognosis. Because they viewed the telling of bad news as an exclusive prerogative of medical practitioners, they did not feel in a position to discuss cachexia because they were concerned that this had the potential to raise end-of-life issues that lay outside the boundaries of their professional role. This meant patients and their families were provided with little information about how to cope with the distressing consequences of cachexia.

Home-based support for palliative care families:challenges and recommendations

Providing adequate supportive services for the families of palliative care patients is a core principle of palliative care. Caring for a patient with terminal illness at home involves a considerable commitment on the part of family caregivers, and attention must be given to the caregiver's needs as well as those of the patient. Although a home death may be preferred by patients and promoted by healthcare agencies as a cost-effective option, it may be an ideal that is not often realised. Enhanced supportive care strategies can ameliorate the challenges facing families of palliative care patients cared for at home. All health professionals need to improve the standard of family-centred palliative care, and more evidence-based approaches are required.

How does involvement of a hospice nurse specialist impact on the experience on informal caring in palliative care? Perspectives of middle-aged partners bereaved through cancer

The aim of this study was to retrospectively explore partners' understandings and experiences in relation to caring for a loved one with a terminal illness, with a particular focus on the role of the hospice nurse specialist (HNS). Participants were purposively sampled and recruited through HNS gatekeepers. Seven middle-aged, bereaved partners participated in semi-structured, qualitative interviews. The interviews were audio recorded and transcribed verbatim and data were analysed using thematic content analysis. Five main themes emerged regarding the impact of the HNS on informal caring: ‘the ambivalence of caring’, ‘the HNS as a “confidante” in caring’, ‘the HNS as a “champion” in support’, ‘the work of the HNS – an unseen benefit’ and ‘being prepared for death and bereavement’. Findings from this study offer new insights into how involvement of a HNS impacts on the ability of carers to perform their role as an informal caregiver. Results highlight a crucial need for carers to have a clear understanding of all aspects of the HNS role so that full benefit is derived from their input. Recruitment of experienced and knowledgeable nurses is paramount, but equally important for carers is the supportive aspect of the role for which nurses need to demonstrate excellent communication skills and an intuitive, caring approach.

The barriers & solutions to providing good quality palliative care in dementia in the GP practice

BACKGROUND: Dementia is a significant worldwide health issue, however, it is often insidious in onset and difficult to diagnose, therefore GPs have expressed a limited confidence in their diagnostic skills, extending into their prognostication of the disease. As a result diagnosing the terminal phase of dementia has been identified as a significant challenge to delivering effective palliative care. Therefore, identifying the challenges faced by the GPs in this field will help to guide their training and support, and as a result could assist in the provision of sustained and effective palliative care for their dementia patients.

General practitioners perceptions on advance care planning for patients living with dementia

BACKGROUND: Advance care planning (ACP) facilitates communication and understanding of preferences, nevertheless the use of ACPs in primary care is low. The uncertain course of dementia and the inability to communicate with the patient living with dementia are significant challenges for GPs to initiate discussions on goals of care.

METHODS: A cross-sectional survey, using a purposive, cluster sample of GPs across Northern Ireland with registered dementia patients was used. GPs at selected practices received the survey instrument and up to four mail contacts was implemented.

RESULTS: One hundred and thirty-three GPs (40.6%) participated in the survey, representing 60.9% of surveyed practices. While most respondents regarded dementia as a terminal disease (96.2%) only 37.6% felt that palliative care applied equally from the time of diagnosis to severe dementia. While most respondents thought that early discussions would facilitate decision-making during advanced dementia (61%), respondents were divided on whether ACP should be initiated at the time of diagnoses. While most respondents felt that GPs should take the initiative to introduce and encourage ACP, most survey participants acknowledged the need for improved knowledge to involve families in caring for patients with dementia at the end of life and that a standard format for ACP documentation was needed.

CONCLUSION: Optimal timing of ACP discussions should be determined by the readiness of the patient and family carer to face to face end of life. ACP discussions can be enhanced by educational strategies directed towards the patient and family carer that enable shared decision-making with their GP when considering options in future care.

The views of general practitioners on advance care planning for patients living with dementia

Background Advance care planning (ACP) facilitates communication
and understanding of preferences, nevertheless the use of
ACPs in primary care for patients with dementia is low. The disease’s
uncertain course and the inability to communicate with
the patient living with dementia are significant challenges for
GPs.
Aim The purpose of this study was to describe the attitudes and
practice preferences of GPs working within the UK’s National
Health System (NHS) regarding communication, and decisionmaking
for patients with dementia and their families
Methods A cross-sectional survey, using a purposive, cluster sample
of GPs across Northern Ireland with registered dementia
patients was used.
Results One hundred and thirty-three GPs (40.6%) participated
in the survey, representing 60.9% of surveyed practices. While
most respondents regarded dementia as a terminal disease
(96.2%) only 37.6% felt that palliative care applied equally from
the time of diagnosis to severe dementia. While most respondents
thought that early discussions would facilitate decision-making
during advanced dementia (61%), respondents were divided
on whether ACP should be initiated at the time of diagnoses
(39.8% in favour vs 45.8% disagreed). Interestingly, GPs who
were longer in practice placed greater importance on the presence
of an advance directive (F (2, 124) = 3.38, p = 0.037).
Discussion The timing of initiating ACP varies across individuals
requiring GPs to carefully consider strategies and receptiveness
of the patient and family carer.
Conclusion The findings promote both ongoing training in communication
and dementia management for GPs to meet the
needs of their patients living with dementia.

An evaluation of palliative care services for cancer patients in the Southern Health and Social Services Board of Northern Ireland.

An interview study of 55 lay carers of people who died from cancer in the Southern Board of Northern Ireland was undertaken using a combination of closed-format and open-ended questions. The aim of the study was to evaluate palliative care services delivered in the last six months of their lives to cancer patients who died either at home or in hospital. Two-thirds of the deaths (36) occurred in the domestic home, 45 of the deceased were admitted as hospital inpatients, and the great majority were in receipt of community nursing (53) and general practitioner (54) services. Open-ended questions were used to allow respondents to give their views about services in some detail and their views about good and bad aspects of services were sought. While they were generally satisfied with services specific areas of difficulty were identified in each aspect of care addressed by the study. The most favourable assessments were made of community nursing with the greatest number of negative comments being made about inpatient hospital care. Differing interests between some of those who were dying and their lay carers were found in two areas: the receipt of help from nonfamily members and the information that the deceased received about their terminal status.