Health system restructuring combined with the preferences of palliative care recipients to be cared for at home has lead to a shift in the delivery of care from the hospital to the home setting. An analysis was conducted on five main home-based palliative care health service components: home-based nurse visits, home personal support worker visits, home-based physician visits, ambulatory physician visits, and other ambulatory and home-based visits. First, we assessed the proportion of total cost associated with the main services at different time points over the palliative care trajectory. Second we examined the socio-demographic and clinical factors that predict the propensity and intensity of service use, using a two-part model. The results suggest that the greatest contributor to the total cost of home-based palliative care was personal support worker visits, followed by nurse visits. The regression analysis revealed that patient age as well as functional status most often predicted health service use.

In the last fifty years, hospice palliative care has changed the modern understanding of dying. Rather than focusing on death, it promotes the facilitation of optimizing life for patients whose conditions have worsened beyong the possibility of recovery or cure. As such, this thesis is a response to the demands of architecture to support this unique stage of life. It analyzes and posits guidelines for designing spaces which must cater to the specific and vastly different needs of the palliative care specialists, family members, and the patients themselves. Also, it seeks to examine the nuanced complexities and poetics involved in a proposed architectural design for a hospice in downtown Toronto. The typology for a hospice is one that is both complex and evolving. It must combine the domestic scale of a home with the efficiency and standardization of an institution. The contemporary hospice must also accommodate rituals and beliefs surrounding the end of life that vary greatly from the many cultures that make up the contemporary city. At the very least, the building must provide inspiration and a hope for a peaceful and dignified transition, recognizing also that this is no longer a traditional place for cure. The distinctions suggest a reconsideration of what is needed and what is expected for those involved in and affected by the dying process. This thesis will explore the architectural possibilities inherent in a new social understanding of the end of life that defies the fatalistic view of an inevitable death, in favour of a hope for dying with dignity while embracing an opportunity to experience liminality during our final days.

Infants with life-terminating conditions (ILTCs) are those whose conditions prevent them from living more than two years. When these infants have difficulty assimilating food and fluids orally, doctors can provide nutrition and hydration through artificial means. While artificial nutrition and hydration (ANH) can provide benefits, it can also result in complications leading to pain and/or distress in addition to that which an ILTC may already be experiencing from one or more underlying conditions. Many medical experts maintain that withholding or withdrawing ANH can help a patient’s body produce its own analgesics. I consider four categories of ILTCs: 1) infants who receive prognoses of two weeks or less; 2) infants who will live longer than two weeks but no more than two years and who are not suffering or in distress; 3) infants who are not dying, but are in distress from the use of ANH; and 4) infants who are not dying, but are in distress from their conditions and/or ANH. I argue that in addition to providing natural analgesics, withholding or withdrawing ANH is a form of comfort care that prevents the occurrence of further complications requiring additional medical treatments and keeps ILTCs content. Under certain circumstances, the withholding or withdrawing of ANH should be obligatory. As it stands, the whole of Catholic teaching on ANH is inconsistent. Operating from the sanctity-of-life ethic, the Church teaches that ANH is an ordinary, therefore obligatory, form of care. But this position contradicts the view that any form of care presenting a grave burden to a patient and/or his family is extraordinary and therefore optional. In addition, by making ANH obligatory, the Catholic Church causes families to undergo heroic suffering (i.e., enduring more than what can be expected or asked of anyone), which the Church says is not required of everyone. I argue that rethinking the Catholic position on ANH will enable the Church to offer practical moral guidance for families to comfort ILTCs, help ILTCs and their families avoid heroic suffering, and provide spiritual care families of ILTCs need, all while still respecting the sanctity of life of every person.

Syfte: Syftet med studien var att ta del av hur vårdpersonal på Hospice beskriver sina olika känslor som uppstår i vården av patienter i livets slutskede, vilka copingstrategier de använder sig av för att bearbeta dessa känslor samt vilka faktorer som de upplever påverkar valet av copingstrategier. Metod: En kvalitativ metod med semistrukturerade intervjuer användes. Åtta kvinnliga deltagare ur vårdpersonalen på Hospice (lika fördelade mellan sjuksköterskor och undersköterskor med varierande ålder och erfarenhet) blev intervjuade. Resultat: Känslor av skuld, frustration, maktlöshet, stress och otillräcklighet upplevdes betungande. För att bearbeta dessa användes främst aktiv och problemfokuserad coping, framförallt samtal och stöd. Vårdpersonalen lägger stor vikt vid att kunna separera privatlivet från arbetslivet. Även känslofokuserad coping i form av distraktion eller avskärmning användes ibland. Detta för att uthärda i stunden och vid senare tillfälle bearbeta dessa upplevelser. Faktorer som påverkade bearbetningen var samarbetet i arbetsgruppen, tidsbrist, samt individuella egenskaper. Slutsats: Klimatet på arbetsplatsen, det vill säga organisation, attityder samt tid för gemensam reflektion är viktigt för bearbetningen. Det är också viktigt att blivande vårdpersonal får kunskap om palliativ vård och olika copingstrategier för att hantera sina känslor. Vårdutbildningar behöver ses över inom detta område. Hur coping används påverkar personalhälsan och även i förlängningen patientvården. Kunskap om copingstrategier måste finnas även på avdelningar där inte specifik palliativ vård bedrivs. / Objective: The aim of this study was to learn how the healthcare personnel at Hospice describes their emotions during work with patients in palliative care, which coping strategies they use to deal with these emotions as well as factors they experience affects the choice of strategies. Methods: A qualitative approach with semi-structured interviews was used to collect data. Eight female participants with varying age and work experience from the Hospice nursing staff were interviewed. Results: Feelings of guilt, frustration, powerlessness, stress and inadequacy were perceived as difficult. To cope with these emotions active and problem-focused coping was used mainly for ventilation and social support seeking. They find it important to separate their private life from work. Emotion-focused coping was used at times for distraction or to distance themselves, to endure in the moment and later on process these emotions. Factors affecting the coping strategies were cooperation in the work group, time constraints and individual qualities. Conclusion: The workplace climate regarding organization, attitudes and times for group reflection, is significant for coping. It is important that aspiring health professionals learn about palliative care and coping strategies to manage their emotions. Nursing programs need to be reviewed in this area. How coping is used affect health among the staff and ultimately also the patient care. Knowledge of coping strategies is important in all areas of healthcare.

Spiritual care is considered to be an important aspect of palliative care however; there has been much debate about the definition of spirituality. In this study a broad definition of spirituality has been utilized. Spiritual needs of palliative patients have been identified. Although evidence relating to bereavement outcomes supports the concept of working with family groups in the provision of holistic palliative care, only one family focused model of spiritual care was identified in the literature and no assessment of the efficacy of this model was found. The needs of staff in the provision of spiritual care have also been found to be important. The objectives of this study were to implement a family meeting model of care to assess it’s efficacy as an instrument for the provision of spiritual care from the perspective of palliative patients, family members and palliative care staff and to consider implications, if any for the inclusion of this model of care in the regular palliative care service. This qualitative study was informed by interpretivism and hermeneutic phenomenology. Ricoeur’s Theory of Interpretation was utilized in the interpretation of data. Participants were recruited through two metropolitan palliative care services. Twelve family meetings were facilitated by the researcher. Subsequently forty-seven patients and family members individually participated in in-depth interviews in which they described their experience of the family meeting and any outcomes they had observed. Fourteen staff members participated each in a semi-structured interview in which they described observed outcomes of the family meeting, their process of recruiting patient participants for the study and insights about the suitability of this intervention for regular palliative care services. Interviews were recorded, transcribed and analysed utilizing Ricoeur’s Theory of Interpretation and with the assistance of qualitative data management software. The most commonly identified outcomes for patient and family member participants were: experience of increased openness of communication, positive and constructive feelings and emotions, gaining new understandings and strengthening or renewal of significant relationships. Their experience of the meeting facilitation was generally positive. These outcomes suggest that spiritual care was provided that had not been made available to these people in the current system. Staff reported positive outcomes for patient and family member participants and considered that this type of intervention would meet a need within the palliative care service. Barriers to implementation such as funding priorities, staff numbers and time were identified. This original study has added to our understanding of the value of working with family units in the provision of spiritual care in palliative care services. Further research such as the application of this intervention to larger and less homogenous populations, the evaluation of long term benefits to family members and ways of identifying families most in need of this intervention are needed. The inclusion of this intervention in regular palliative care service would have implications for staff training and support. / http://proxy.library.adelaide.edu.au/login?url= http://library.adelaide.edu.au/cgi-bin/Pwebrecon.cgi?BBID=1345430 / Thesis (Ph.D.) - University of Adelaide, School of Population Health and Clinical Practice, 2008

Rural experiences are under-represented in the end-of-life care literature. In addition, population projections indicate that the numbers of older rural people are increasing. In an attempt to better understand their needs, this study considers how older people experience end-of-life (EOL) care in a rural New Zealand setting. Having responded to local media and community notices, seven participants, who in the last eighteen months had cared for someone over the age of 65 with a terminal illness, spoke about their experience of rural EOL care. Their stories were then transcribed and analysed, using narrative analysis. Participants spoke about similar issues, but from different, sometimes conflicting, perspectives. Positioning themselves primarily as carers, rather than as rural people, the participants’ stories nevertheless reflected their social location for caring, as they talked about exhaustion and needing 24 hour support; limited access to specialist palliative care services; and the difficulties of caring for people with complex needs. At the same time they spoke of the joys and rewards of caring. The ambivalence and conflict evident in the stories indicates the participants’ location in a particular place and time in the history of dying. Caught between two paradigms of care, these participants vacillate between the desire for the empathic, compassionate care of yesteryear and the best that modern medical technology can offer. Discussing when to continue and when to stop medical intervention produced the most conflicting perspectives. However, all agreed that having time to form therapeutic relationships is a key component of EOL care. Overall, the stories demonstrate that the multiple and complex experiences of older rural people render stereotypical assumptions about rural life and dying at home problematic. However, as this study demonstrates, simply talking with people provides access to and understanding of their lived realities. Incorporating this kind of approach in future rural EOL care planning will move us closer to achieving contemporary goals of positive ageing and dying well.

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Diss. Malmö : Malmö Högskola, 2006. / Härtill 4 uppsatser.