Palliative Day Research Articles

UTILITY OF THE ‘SURPRISE QUESTION’ IN A DAY THERAPY PALLIATIVE CARE PRACTICE; SHOULD SPECIALIST PALLIATIVE CARE BE FOCUSING ON TOTAL SYMPTOM BURDEN AND COMPLEXITY RATHER THAN PROGNOSTICATION?

IntroductionThere is recognition that the nature of palliative care may be changing, as cancer survival improves and long-term conditions increase the complexity of the case load. Previous work has examined...

「キャンパス型緩和デイケア・サロン」におけるがんサバイバーの体験

「キャンパス型緩和デイケア・サロン」におけるがんサバイバーの体験

My first world palliative day care celebration

My first world palliative day care celebration

P110 Evaluation of medicines adherence in day hospice patients

BackgroundCentral to the care of patients in Day Hospice is an understanding of their compliance with medication. The Hospice has a Medicines Management Policy in place, but had no structured...

P109 Transition in palliative care study day series

Background / ContextMedical advances have led to more children with life-limiting conditions surviving into adulthood with an increasing number accessing adult Specialist Palliative Care (SPC) services. These young adults often...

Being in transit and in transition The experience of time at the place, when living with severe incurable disease ‐ a phenomenological study

The aim of this study is to describe the experience of time as it presents itself at the place being situated when living with severe incurable disease and receiving palliative care. The empirical data consist of 26 open-ended interviews with 23 patients receiving palliative care at home, at a palliative day care, in a palliative bed unit in hospital or in a nursing home in Norway. A common meaning of a shifting space for living emerged from the analysis and was revealed through three different aspects: (i) Transition from a predictable to an unpredictable time: To live with severe incurable disease marks a transition to a changed life involving an ongoing weakened and altered body with bothersome symptoms making experience of time different and unpredictable. (ii) Transition between a safe and unsafe time: When time is unpredictable, feeling safe is revealed as essential to how time is experienced at the place being situated. (iii) To be in transition from a homely to a homeless existence: In a time of increased bodily weakness, unpredictable ailments and displacements, the sense of belonging to the place is revealed as significant to the experience of time. Not knowing where to be in a time of change is like an existential cry of distress where the foothold in existence is lost. The findings are discussed and interpreted as an embodied experience originating from the passage of time continually affecting life sometimes so fundamentally that it marks a transition to a changed space of life that is reflected in the experience of time.

Pilot-testing the French version of a provisional European Organisation for Research and Treatment of Cancer (EORTC) measure of spiritual well-being for people receiving palliative care for cancer

Spiritual well-being is increasingly recognised as an important aspect of patients' quality of life when living with a potentially life-limiting illness such as cancer. The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group is developing a measure for assessing spiritual well-being cross-culturally for people receiving palliative care for cancer. The pilot-testing phase of the study explored potential problems related to the content and administration of a provisional version of this measure. The French version was pilot-tested with 12 patients in a palliative and supportive day care unit in Paris. Participants were asked to complete the measure and the EORTC QLQ-C15-PAL before being interviewed about their responses. The administration of the measure enabled participants to express the difficulties and existential concerns they experienced. The items were not considered intrusive, despite the sensitive topic of the measure. This article considers difficulties with items pertaining to 'religion' and 'spirituality' in the context of French culture. Overall, this measure appears to enhance holistic care, by providing caregivers with a means of broaching spirituality issues, a topic otherwise difficult to discuss in the context of palliative care.

Social objectives of palliative day care groups

This paper reports an evaluation by patients, staff and volunteers involved in different types of groupwork in a palliative day care centre; policy comment and research suggests that social as opposed to healthcare objectives in palliative day care are ill-defined. Staff and volunteers completed questionnaires (n=48) and patients were interviewed (n=37) about nine social objectives formulated from the palliative day care and groupwork literature. The results demonstrate agreement between patients, staff and volunteers about objectives, with most objectives assessed being positively identified as being helpful. Formal activity groups organised around creative arts, involving creation of an artistic object were more important to staff and volunteers, while patients gave equal importance to less formal social groups. Staff valued patients supporting each other about their illness and death, while patients were divided, with some preferring not to share. The researchers suggest that the staff and volunteers’ focus on creative activities and outcomes led them to give less priority to specific efforts to engage patients in social skill development to combat social isolation.

Evaluation of an admission and discharge programme at a UK specialist palliative day hospice

This paper reports on a system of managing admissions and discharges from a specialist palliative day hospice (SPDH) in the south of England. SPDH is a well established component of palliative care provision in the UK, but studies have rarely addressed issues around admission and discharge. Case study methodology was used to evaluate the programme. Interviews were conducted with five patients who had attended the day hospice, taken a break or been discharged and returned; their carer(s); the key worker from the day hospice; and any other health professional who was involved in the patient's care during the admission. Communication issues were found within the team regarding referral and discharge processes, documentation of care, decision making, and information giving. Family members did not feel involved in decision making in relation to the programme. The most significant finding was the emotional and psychological impact on the patients of taking the break. Discharge from SPDH is known to be a difficult and sensitive issue, especially when patients are living with life-limiting illnesses that can change quickly. The patients in this study all had some form of dependency on the service and four of the five would have chosen to continue attending if they could. They experienced deterioration in psychological and physical wellbeing during the period in which they did not attend.

A programme of care in palliative day care

Palliative day care aims to help patients and carers to live a good quality of life within the limitations of their illness. The last 30 years has seen an exponential...

Development of an integrated model for earlier identification and provision of palliative care for patients of all diagnoses

IntroductionThe National EOLC Strategy seeks to improve access to high quality palliation for patients of all diagnoses. One such group for which this is difficult is advanced heart failure.AimTo use...

The Role of Acceptance in Rehabilitation in Life-Threatening Illness

ContextPalliative care rehabilitation aims to maximize physical and psychological functioning, but negative thoughts can hinder patients from attempting this approach. Acceptance and commitment therapy (ACT), a modified form of cognitive behavioral therapy, encourages individuals to experience and manage negative emotions by focusing on changing individual behavior and so improve functioning. ACT has been used in many health-related behavioral interventions but not in palliative care rehabilitation. ObjectivesTo investigate the relationship between acceptance (often called experiential acceptance in ACT) and psychological and physical status. MethodsCross-sectional study in which a consecutive sample of patients attending a specialist palliative care day therapy unit for rehabilitation completed the Acceptance and Action Questionnaire-II to measure acceptance and the Kessler-10 questionnaire to measure psychological morbidity. Physical function was assessed by a timed two-minute walking test and one-minute sit-to-stand test. Correlation statistics and multivariable regression analyses were used to explore the strength of relationships between acceptance and psychological morbidity and physical function. ResultsOne hundred one patients were recruited, mainly white women with a mean age of 64 years. Correlation analysis showed a negative association between acceptance and psychological morbidity (r=−0.59) and a positive association between acceptance and sit to stand (r=0.27) and distance walked (r=0.21). All three of these relationships were statistically significant after adjustment. ConclusionThese associations suggest that it may be possible to reduce psychological morbidity and improve physical mobility by increasing patients' acceptance using an ACT-based intervention. Future work is now needed to develop an ACT-based intervention in palliative care rehabilitation and test its acceptability and feasibility.

Stroke patients’ pathways to rehabilitation in Portugal

Purpose: To report on stroke patients’ pathways to rehabilitation in Portugal, in light of an ongoing EHSD procedure. Theory and methods: The Portuguese government has created the National Network of Continuous Integrated Care (RNCCI) to reduce costly acute care and length of stay in hospitals by substituting less costly care closer to the community. The network is based on establishing protocols with existing institutions, designated according to the kind of services they provide as convalescence, medium-term and rehabilitation, long-term and maintenance, palliative care unit and day care and autonomy promotion units. Home care is supposed to be one important element in this network, but implementation only now is starting. Integration outside the RNCCI and between the RNCCI and other levels of care is still low, especially between health and social institutions and between formal and informal care. The study is based on an RCT encompassing patients admitted to a stroke unit. Those fulfilling admission criteria are randomised to the intervention group or the control group. In the control group patients receive traditional care. In the intervention group patients receive EHSD services. All are followed for 6 months after discharge. Data are collected regarding outcomes and patients’ pathways. Results: Preliminary results confirm the existence of a very fragmented and complex setting. Conclusions and discussion: Beside the benefit that might accrue to patients receiving home rehabilitation, the simple fact of having someone assisting them navigate the system play a significant role in patient and family motivation, satisfaction and quality of life.

Palliative day care: A qualitative study of service users' experiences in the United Kingdom

In many countries, specialist palliative day care for patients with life-limiting conditions is provided by specific teams of professionals from a range of relevant disciplines. During 2006 to 2007, the day care services at a hospice in the U.K. were redesigned so that specialist palliative care sessions replaced the existing long-established, traditional day care model. The purpose of this study was to enhance the understanding of those aspects of the service that the users valued most (the "X-factor"). Qualitative data were collected via semistructured interviews with 29 patients and eight carers. These data were subjected to a framework analysis. The users of the service used poignant and powerful words to describe the special qualities that they valued, some phrasing it as the X-factor. The data are presented under three themes: the quality of the staff; the sense of community; and relationships. Of these, the relationships between and within the staff and patient groups held the greatest significance for the patients. Service providers need to recognize that opportunities for the formation of relationships between the patients, staff, and carers are of utmost importance when designing palliative day care services.

Why Do Health Professionals Refer Individual Patients to Specialist Day Hospice Care?

There are no nationally agreed criteria for admission to specialist palliative day care (SPDC). Previous work has called for future research to qualitatively examine why health and social professionals make referrals to day care. Therefore the current study aims to address this question using semistructured interviews to gain first hand accounts of referrers' reasons for making referrals to SPDC. The reasons for referral to SPDC of eight professionals were explored using semistructured interviews. An exploratory methodology (interpretative phenomenological analysis [IPA]) was used to analyze the data to allow for an in-depth investigation. Six main themes were apparent with regard to referring a patient to SPDC: physical, social and psychological well-being, continuity of care, introduction to the hospice environment, and caregiver respite. This study provides an insight into reasons for referral to SPDC. Referrers value the multiprofessional team, the holistic approach to care as useful to managing difficult, complex, and persistent problems in patients wishing to be cared for in the community. Additional benefits include a helpful introduction to hospice services and much needed regular respite for caregivers. Future research into patient and professional perceptions of the process of referral to SPDC could be useful. Expansion of the current study could contribute to the development of a standardized referral tool to be used in conjunction with referrers' clinical judgment.

Patients’ psychosocial experiences of attending Specialist Palliative Day Care: A systematic review

Recent reviews conclude that the benefits of attending Specialist Palliative Day Care (SPDC) are likely to be in social, psychological and spiritual domains. However, these areas are not easily identified, leaving researchers and practitioners unclear as to what aspects of these domains patients most need and desire. The objective of this review was to systematically evaluate literature on patient-perceived psychosocial experiences of attendance at SPDC. Twelve studies were included. Evidence showed that patients value a person-centred approach that reduces isolation, increases social support, encourages communication and provides activities. Future research could focus on investigating why patients value the psychosocial experiences reported and how these experiences can be defined in a way that would be meaningful to clinical service commissioners. Once this has been done, clinicians can start to measure more effectively clinical effectiveness and devise justifiable interventions to help this patient group.

Coping with Terminal Illness: The Experience of Attending Specialist Palliative Day Care

The provision of supportive and palliative care for people with life-shortening illness has been emphasized throughout Department of Health and National Institute of Clinical Excellence (NICE) cancer guidance. However, the question of whether services are achieving this aim has been sparsely researched to date particularly in relation to Specialist Palliative Day Care (SPDC) services. The current study aims to explore the experiences of patients attending SPDC with regard to coping with a terminal illness. The views of 11 patients attending SPDC were explored using semistructured interviews. An exploratory methodology (Interpretative Phenomenological Analysis [IPA]) was used to analyze the data to allow for an in-depth investigation. Emerging themes suggest that SPDC provides an environment in which patients are helped to cope with stressors through a sense of self, belonging, acceptance of the reality of death, and a focus on life. This work provides a piece of the puzzle in the exploration of the processes underpinning attendance at SPDC from a patient's perspective. It suggests that SPDC provides an environment in which patients receive help in coping with terminal illness. In such an under researched area it provides an insight regarding SPDC attendance which can be built upon or challenged by future research.

Involvement in everyday life for people with a life threatening illness

In many studies, everyday life has been shown to be of great significance in the context of life-threatening cancer. The aim of this study was to investigate how people with cancer who are receiving palliative care engage in and undertake activities in their everyday lives. This is a qualitative interview study adopting a grounded theory approach. The sample was composed of participants receiving services from palliative hospital-based home care and day care services. A total of 47 individuals were interviewed. Despite experiencing the threat of progressive loss of functioning, the participants were striving to remain involved in and to be active in everyday life. Continued involvement in everyday life with lowered expectations concerning performance gave the participants the possibility to continue doing daily activities as well as to perform new and engaging activities that were a source of pleasure and enabled the patients to feel a sense of competence. This study has demonstrated the power of being involved in everyday life activities. The proposed model, explaining individuals' desire to continue to live an active life despite a progressive loss of functioning, can provide a model to help the reasoning of professionals when supporting patients in their everyday life.

Pediatric Palliative Care, Costa Rica’s Experience

This article describes the patients and activities of the Pediatric Palliative Care and Pain Control Clinic of the National Children's Hospital (PPCPCC NCH) in San Jose, Costa Rica Central America, founded in 1990, is the first such clinic in the country. This study includes all the children and adolescents referred to the PPCPCC NCH from January 2000 to December 2008. This is a quantitative and descriptive study. We used a simple format that included variables such as age, sex, diagnostic, place of reference, pain, and other symptoms. The database initially registered a total of 1470 patients; 25 of these were excluded from the study because of incomplete information, leaving a total of 1445 registered cases for the analysis. The average number of patients admitted was 156 per year. Malignant tumor was the principal diagnosis at the time of admission, followed by central nervous system abnormalities. Pain was the most frequent symptom. Most patients were visited or examined at home and/or the pediatric palliative care day center and died in their own home. The initial analysis enabled us to obtain information and feedback about the work of the PPCPCC. We are now able to understand more fully the needs of pediatric palliative care in Costa Rica such as increasing the coverage of pediatric patients who require palliative care, improving our resources, further defining the criteria for admission of patients to a palliative care program, and developing standards for measuring and recording symptoms besides pain.

8 Reducing Waiting Times for Admission to Day Therapy Services

Palliative day therapy services aim to improve patients’ quality of life by the provision of multidisciplinary holistic care and rehabilitation, within disease constraints (Corr and Corr, 1992; Spencer and Daniels, 1998). In 2008, an internal survey involving 30 outpatients highlighted that some waited up to 1 month for their initial appointment. National Institute for Health and Clinical Excellence (NICE, 2004) guidance recommends that patients with specialist palliative care needs should be ‘referred to services …