Hospice and Palliative care

Background Palliative care has proven over time that it can help prolong life spans with the use of hospices. The literature reports that most patients with cancer are diagnosed in the later stages and since there is no cure, they will require palliative care at some point during their illness. However, most developing countries, including India, have failed to establish hospices; as a result, large numbers of cancer patients are still deprived of palliative care. To initiate better access to hospices, it is important to understand the benefits of the same. Therefore, the present study aims to explore the advantages of hospice care from the perspectives of advanced cancer patients living in hospice centres. Methods The present study uses the method of exploratory research. Using purposive sampling, 8 participants living in a hospice in Bengaluru, India were selected and semi-structured interviews were conducted to collect data from the patients. This data was analysed using thematic...

The majority of people (70–80%) when asked where they would prefer to die say they want to die in the comfort and intimacy of their own homes (Gomes et al., 2013; Palliative Care Australia, 2011). However, only 16–20% of people manage to fulfil this wish. This report documents Stages 2–4 of the Caring at End of Life Study, which identified the end-of-life care arrangements that allowed 20% of terminally ill people to be cared for at home. We wanted to know how ordinary people supported each other to care for someone dying at home, how their wider community supported the carer, what formal support was available to carers and how those formal and informal networks interacted with each other. Over 200 primary carers, and members of formal and informal caring networks contributed to the study. They participated in individual carer interviews and focus groups in eight urban and regional locations. We used participatory visual methods, such as photo/voice and network mapping, to capture collaborative caring stories and illuminate the space of the possible found within communities undertaking end of life care. Findings from Stage 1 show that formal providers are supportive of the informal networks’ role in the care of the dying at home.1 However, formal service providers do little to establish, support, or maintain the informal networks although there is much goodwill and scope for them to do so. We identified several barriers to formal and informal networks working together more effectively. In particular, we found that the Australian policy of health promoting palliative care (HPPC) is not substantially translating to practice, and there is potential for a stronger and more proactive reorientation towards HPPC and a community capacity building approach. Overall findings: We found that the dying person and their caring networks exist within a complex web of social-environmental relationships where the knowledge, skills, values, attitudes and beliefs of network members are influenced by the following factors: existing relationships with people and place; formal and informal organisations and groups to which they already belong; the nature of the communities in which they live; social norms and expectations of the groups and cultures with which they identify; experiences and knowledge of health services and other social support organisations (see also Huang, 2014). While this web of pre-existing relationships affects a network’s ability to come together in the first place we also found that this was a two way street. Members of networks who cared were affected by their caring individually, collectively and communally. No-one, and no environment, remained the same, so this web of relationships and the knowledge, skills, values, attitudes and beliefs within the web also changed. This ecological view of caring asks that we put our understanding of these interrelationships first and foremost (Richard et al, 2011). The concept of an ‘ecology of care’ (as both a goal and a possibility) puts place and environment – and people’s attachment to place – centre stage in end-of-life care, incorporating as it does, concepts of trust, shared norms, collective action and social agency as integral to the building of strong community-based care networks. The ecological viewpoint – that all living things have a relationship to each other and to what’s around them, and that human beings (and human systems) have the capacity to act selectively with the environment to achieve a harmonious relationship (Bronfenbrenner, 1989), has very practical application in the context of an end-of-life care environment.

Introduction. The influence of the environment on wellness, not only for patients themselves
but for all care-givers as well, refers to the humanisation principles of spaces of
care. Commencing with an analysis of existing paediatric hospices, the paper examines
design suggestions for prosthetic environments, considered as a fundamental component
in the healing process.
Methodology. A prosthetic environment can be created only through a specific knowledge
of the real needs of users. Therefore, some scholars have conducted research work
for defining the best practices for healing environments, supported by an assessment and
comparison of case studies. The methodology is based on two phases: the first is based
on interviews with experts in hospice design and management and the second, through
the application of a questionnaire to several users.
Discussion and Results. The output of the work is the achievement of a logical, sequential
and participatory broad-spectrum process in the design of health facilities in order to
cause a sustainable awareness in paediatric hospices.
Conclusion. Starting from the research work, it is necessary to define a scientific method
for implementing knowledge on health, psychological, perceptual and behavioural needs
to contribute towards proper planning for meeting the real requirements of users.

Please note that I am not permitted to disseminate this test directly, no matter who requests it. This test is officially owned by UCLA and copyright protected and distributed through Behavioral Health Innovations through a licensing agreement with UCLA's Office of Intellectual Property.

Versions of the PCBD Checklist are currently available in both English (test and administration manual) and Spanish (test only).

For fee schedule and licensing agreement (available for online purchase) see https://www.reactionindex.com. The primary author can be contacted at clayne@nova.edu.

For a press release, see http://newsroom.ucla.edu/releases/new-ucla-university-of-texas-checklist-helps-identify-children-teens-with-bereavement-disorder

ABSTRACT: The Persistent Complex Bereavement Disorder (PCBD) Checklist—Youth Version is a psychological test for bereaved children and adolescents aged 8-18. It is designed to assess content domains corresponding to DSM-5 proposed Persistent Complex Bereavement Disorder symptom criteria, including Separation Distress, Reactive Distress, Existential/Identity Related Distress, and Distress over Circumstances of the Death. The PCBD Checklist replaces the (now-retired) early prototype measure, the UCLA Extended Grief Inventory (Layne, Savjak, Saltzman, & Pynoos, 2001) as a more rigorously constructed, developmentally attuned, psychometrically sound, and clinically useful instrument. The 39 PCBD Checklist items were written specifically to correspond with DSM-5 proposed PCBD diagnostic criteria. Consistent with best practice test construction procedures (Haynes, Richard, & Kubany, 1995), each PCBD test item has been extensively field-tested by a team of ten masters-level clinicians and clinical child psychologists under the clinical supervision of one of the test developers (Dr. Julie Kaplow). Iterative field-testing was conducted with 237 bereaved children and adolescents aged 8-18 in various field settings including bereavement camps, grief support facilities, community clinics, and school-based health clinics. The PCBD Checklist can be used for a range of clinical applications including risk screening, treatment triage, case conceptualization and treatment planning (including assessment-driven treatment tailoring), and treatment outcome evaluation. Because Persistent Complex Bereavement Disorder (PCBD) is a proposed research diagnosis located in the appendix of DSM-5, the PCBD Checklist can only be used to assign a provisional (unofficial) discrete (present/absent) PCBD diagnosis as well as yield continuous Criterion B and C subscale scores. Administration time for the PCBD Checklist is approximately 5-8 minutes, and scoring and interpretation take between 5-10 minutes. The PCBD Checklist is typically clinician-administered but can be adapted for self-report with older children and adolescents. Training in the administration, scoring, and interpretation of the PCBD Checklist can be provided in person or online by authorized trainers. Publication Date: Nov 2014.

Initial inquiries regarding the PCBD Checklist can be directed to Christopher Layne at Clayne@nova.edu.

Technical questions regarding copyright and licensing of the PCBD Checklist can be directed to Dr. Alan Steinberg at asteinberg@reactionindex.com. Be sure to also CC Christopher Layne at clayne@nova.edu .

This article presents a new avenue for healthcare risk managers to drive improvement for patients and healthcare organizations alike: Working to reduce avoidable patient suffering. It briefly describes the problem of patient suffering, differentiates between avoidable and unavoidable suffering, and suggests that common risk management tools can be used to tackle the problem. It also highlights a success story from one large health system.

Il numero monografico della rivista affronta il tema delle Cure Palliative, declinando la riflessione su diversi argomenti: dalla formazione agli aspetti etici. Vengono, inoltre, presentate sperimentazioni e ricerche realizzate in Italia, in questo ambito.

Nursing and Public Health, 2011, vol. 1, nr 3, July-September, p. 245–250
Streszczenie
Opieka paliatywno-hospicyjna przywróciła współczesnej medycynie i społeczeństwu holistyczną wizję człowieka z jego złożonymi potrzebami u kresu życia. Obok aspektów medycznych, duchowych i emocjonalnych, ważnych u kresu życia, nie mogą być pomijane potrzeby socjalne chorego i jego bliskich. Praca socjalna od początku
współczesnej opieki paliatywno-hospicyjnej stanowi ważną część zespołowej opieki. Przykładem może być model amerykański, gdzie specjaliści z pracy socjalnej w opiece paliatywno-hospicyjnej są zrzeszeni w Stowarzyszeniu SWHPN (Social Work Hospice-Palliative Care Network). Wysoki poziom profesjonalizacji pracy socjalnej u kresu
życia w krajach anglosaskich powinien być inspiracją dla zespołów opieki paliatywno-hospicyjnej w Polsce. Obecna przez lata w zespołowej opiece praca socjalna przestała być wymaganiem na liście świadczeń opieki paliatywnej, co może prowadzić do likwidacji etatu pracownika socjalnego w interdyscyplinarnym zespole. Zarówno działania edukacyjne w pracy socjalnej, jak również świadomość istotnej roli pracownika socjalnego w opiece u kresu życia i w towarzyszeniu w żałobie są ważnymi wyzwaniami. Obecność pracownika socjalnego w zespole opieki paliatywno-hospicyjnej lub stała współpraca z siecią pomocy społecznej w środowisku są gwarancją właściwego wypełniania misji hospicyjnej, w której nie może zabraknąć troski o medyczne i pozamedyczne aspekty opieki u kresu życia

(Piel. Zdr. Publ. 2011, 1, 3, 245–250).
Słowa kluczowe: praca socjalna, opieka u kresu życia, opieka paliatywno-hospicyjna.

Abstract
Social work, since it’s origins, has been always concern for the seriously ill, dying and bereaved. The modern Hospice Movement, had evoked that the human being at the end of life has not only medical needs. Apart of the medical aspects of care, there is an urgent need for the psychological and spiritual care, as well as for the social care.
Social work has been part of the modern interdisciplinary hospice team since the beginning. The example of good practice of cooperation between medical and non-medical part of the team is American model of integrated care towards the end of life. Adequately prepared and trained social workers for the hospice-palliative care are united in SWHPN – Social Work Hospice-Palliative Care Network. Professional competencies, standards and procedures, as well as training might overwhelmed social workers and hospice-palliative teams in Poland. They should inspire
them instead, to prepare the adequate training for social workers dealing with the end of life issues in Poland, and open the interdisciplinary teams for important impact of social work. It is especially important in the current situation, when the good practices of social work in hospice-palliative care have been stopped by the change of the
required members of the interdisciplinary team in NFZ standards. It creates the temptation of reducing the team from social worker in search of always short financial resources. Both medical, and non-medical aspects of care, among them social work, are crucial for the patients, their loved ones and those in grief
(Piel. Zdr. Publ. 2011, 1,
3, 245–250).
Key words: social work, end of life care, hospice-palliative care.

This paper aims to enhance of understanding of the issue of euthanasia,
as well as to analyze and apply the acquired knowledge to remind followers
of all religions the importance of having the proper attitude towards death
and how to confront it.I have cited five factors related to the first precept for lay Buddhists presented in the Pāli Canon (Tipiṭaka) and its commentaries (aṭṭhakathā). This precept admonishes against killing, and the factors I cited should be a
criterion for how to view the euthanasia issue. I also want to assert that
doctors should acknowledge and accept a patient’s right to refuse medical
treatment and allow them to die naturally if that is the patient’s wish.
This research presents and illustrates the textual approach to qualitative
research. The primary sources of my data were the Pāli Canon (Tipiṭaka) and
its commentaries (aṭṭhakathā) and sub-commentaries (ṭīkā). Secondary sources
were books by well-known scholars in the field of Buddhist bioethics. I categorized and analyzed all the collected data to present a clear picture of the issue of euthanasia from a Buddhist perspective. The case of Buddhadāsa Bhikkhu’s death and his interpretations of the application of Buddhist teachings are one possible way to resolve the issue of euthanasia and help Thai medical practitioners to prepare a system of proper hospice care that will assist patients in attaining inner tranquility, allowing them to die in peace naturally.

Key words: Euthanasia, Living Will, Buddhist Precepts, Hospice Care,
Compassion (Karuṇā), the Law of Kamma, Intention (cetanā)

Przewlekle chory w domu (375 str., Gdańsk 2011)
Red: Piotr Krakowiak, Dominik Krzyżanowski, Aleksandra Modlińska

Książka skierowana jest do każdej osoby opiekującej się przewlekle i ciężko chorą osobą. Zainteresowanie nią wskazuje, że jest cenną lekturą dla zawodowej grupy opiekunów (pielęgniarek, pracowników socjalnych, opiekunów w domach opieki, opiekunów medycznych, duszpasterzy) jak i osób uczących się wspierania przewlekle chorych. Poradnik jest bezcenną pomocą dla rodzin i bliskich osób starszych, ciężko i przewlekle chorych, jak również przewodnikiem dla wolontariuszy i osób pragnących wspierać chorego i jego bliskich.
Zrozumienie przekazywanych treści ułatwiają zdjęcia i schematy a także dołączony do książki film edukacyjny praktycznie ukazujący etapy opieki i pielęgnacji. 

Książka otrzymała patronaty chrześcijańskich organizacji charytatywnych: Caritas, Diakonia, Eleos, podkreślając wagę aspektów duchowo-religijnych opieki. Podręcznik może być cenną pomocą dla osób pracujących i kształcących się w kierunkach: pielęgniarka hospicyjna,  środowiskowa, pracownik socjalny, opiekun medyczny, pracownik DPS, i innych związanych z opieką nad ciężko chorymi w instytucjach i w opiece domowej.

„Autorzy z profesjonalizmem, ale i wyczuciem ujęli trudne medyczne i psychologiczne problemy w taki sposób, by ten poradnik był rzeczywiście towarzyszem w trudnych chwilach sprawowania opieki. Jako Przewodniczący Zespołu Ds. Duszpasterstwa Służby Zdrowia gorąco rekomenduję ten podręcznik, którego partnerami są chrześcijańskie organizacje charytatywne Caritas, Diakonia i Eleos. Uważam ją za cenną i praktyczną pomoc dla rodzin przewlekle chorych i dla opiekunów nieformalnych. W każdej parafii rośnie liczba osób niesamodzielnych, przewlekle chorych i starszych, przebywających w domach. Obok wizyt duszpasterskich odbywanych regularnie, do tych osób mogliby pójść odpowiednio przeszkoleni wolontariusze z Parafialnych Zespołów Caritas czy z grup charytatywnych. Życzę, więc, by po tę książkę sięgnęli duszpasterze, którzy razem z medykami w ich parafii przeszkolą wolontariuszy, by oni czynili mniej dotkliwym los ciężko i przewlekle chorych wokół nich.”  Bp S. Regmunt

Der Beitrag untersucht das Konzept des ‚spirituellen Schmerzes' an einem Beispiel aus der Bereich der Pädiatrie und im Hinblick auf die Aufgaben interprofessioneller Spiritual Care. In einem ersten Schritt wird die mehrschichtige Genese des Konzepts bei Cicely Saunders nachgezeichnet, um es anschließend in Abgrenzung gegenüber verwandten Begriffen wie seelischem Schmerz (psychic pain), religiöser Anfechtung (religious struggle) oder spirituelle Bedrängnis (spiritual distress) weiter zu schärfen und theologisch zu vertiefen. Die Überlegungen münden in der These, dass ‚spiritueller Schmerz' als Sinnschmerz zu verstehen ist, der sich in körperlichem Schmerz manifestiert und diesen verstärkt.

Using an pediatric example, the article investigates the concept of spiritual pain with regard to interprofessional spiritual care. First, the genesis of the concept in Cicely Saunders' writings is traced. Second, the concept is clarified and differentiated from other concepts (psychic pain, religious struggle, spiritual distress). Third, the articles questions theological understandings of spiritual pain. It is to understand as a meaning-related pain that manifests itself in bodily pain and intensives it.

Pain and symptom control challenges are common in palliative care, and the search for other therapeutic strategies is ongoing. Unfortunately, patients and their caregivers are receiving little information or support from healthcare providers regarding the increasingly popular cannabinoid-based medicines (CBM). Clinicians, meanwhile, feel understandably perplexed by the discrepancy between the available evidence and the rapid interest in which patients and their families have demonstrated for CBM. There is an urgent need to address the many challenges that are delaying the appropriate integration of CBM into clinical practice, notwithstanding the obvious need for a solid general knowledge of pharmacology, mechanism of action and available clinical evidence supporting its use. The authors will address these challenges and provide practical recommendations regarding patient assessment for the use of CBM. The authors will also make suggestions regarding patient expectations in order to define clear objectives, review the necessary precautions prior to initiating treatment, aid in selecting the appropriate strain and route of administration as well as establishing proper titration and monitoring protocols. The authors will also discuss the lesser known but potentially therapeutic psychoactive effects of cannabis. As this class of therapeutic agents are likely to play a major role in palliative medicine in the near future, clinicians would benefit from familiarizing themselves with CBM and we can expect that patients and their caregivers will appreciate receiving support in their search for safe and effective therapeutic alternatives.

Este trabajo se propone analizar las prácticas de cuidado de personas enfermas en el final de la vida llevadas a cabo en el contexto de una institución hospice ubicada en la provincia de Buenos Aires, Argentina. A partir de una metodología cualitativa de investigación, entre 2016 y 2020 se realizó un trabajo de campo etnográfico, con observación participante en los diversos equipos de voluntarios y personal de enfermería en su labor diaria, complementada con charlas informales y dos encuestas. Adicionalmente, se realizaron entrevistas semiestructuradas con actores claves. Del material recabado, se muestran algunos de los valores sobre los que se sustenta el cuidado hospice y que discuten direc-tamente con el modelo biomédico, tales como la integralidad, el holismo y el respeto por la autonomía de la persona enferma. Como hipótesis, se sostiene que el cuidado, como práctica constitutiva de la interacción humana, produce y reproduce valores que compo-nen el entramado de la vida social. Por tanto, analizar prácticas de cuidado en contextos no clínicos, a partir de propuestas que buscan humanizar el contexto de la atención de la salud, brinda herramientas para pensar críticamente los valores que estructuran nuestro sistema sanitario.

This study aims to analyze end-of-life care practices carried out at a hospice institution located in the province of Buenos Aires, Argentina. Based on a qualitative research methodology, ethnographic fieldwork was carried out between 2016 and 2020. Fieldwork included participant observation of the day-today work of diverse volunteer teams and nursing professionals, which was complemented with informal conversations and two surveys. Additionally, semi-structured interviews with key actors were conducted. The data collected reflect some of the values of hospice care that directly challenge the biomedical model, such as integrality, holism, and respect for the autonomy of the sick person. This article puts forth the hypothesis that care-as a constitutive practice of human interaction-produces and reproduces values that make up the structures of social life. Therefore, analyzing care practices in non-clinical contexts, based on proposals that seek to humanize the context of health care, provides tools to think critically about the values that structure our health system.

Esta tesis tiene como objetivo fundamental analizar antropológicamente cómo se construye la noción de persona en el cuidado de personas con enfermedades amenazantes para su vida que se encuentran en el final de su vida. La investigación se sustenta empíricamente en un trabajo etnográfico llevado a cabo dentro de una institución hospice ubicada en Buenos Aires, Argentina, entre 2014 y 2020. La práctica de cuidado analizada, por tanto, corresponde a aquella perteneciente al moderno movimiento hospice, y que sigue los fundamentos de su filosofía (cuyas características son presentadas en el desarrollo del escrito): el cuidado hospice. Este tipo de establecimientos se dedica, de forma gratuita y voluntaria, al cuidado de personas que se encuentran en el final de su vida, y que no disponen de recursos, sea económicos o humanos, para ser cuidados en sus hogares.

This work aims to reconstruct the historical trajectory of the emergence and development of the hospice movement, from its beginnings (in the medieval hospices) to its institutionalization. This historiographic analysis seeks, rather than being a description of chronologically ordered events, to give some explanation as to what were the conditions of possibility that allowed the birth of such phenomena: This is a philosophy of care at the end of life associated with a proposal of humanization of health that takes as its fundamental axis the concepts of dignity and person. In order to achieve this it will be attempted, on the one hand, to give an account of how the development of the hospice movement is inscribed in broader structural processes of change of social meanings and attitudes to death and, on the other, show the link between this phenomenon and the development of other types of movements during the postwar period, such as Palliative Care, bioethics (both in clinical practice and in research with human beings) and those linked to the promotion of respect for patients' rights (mostly linked to the practice of euthanasia). The need to deepen the trajectory of the hospice movement since its pre-modern beginnings is linked to the fact that today these types of institutions continue to be faithful to the original religious spirit with which arose. This spirit, as we shall see later, is linked to the care of the dying from a philanthropic perspective that gives importance to both socioeconomic factors - is a movement aimed at generally poor people - as well as to the understood cure, not from a biological point of view, but as a cure of the soul.

Identification of environmental Therapeutic Goals (TGs) has proven essential in providing useful guidance for planning and design (Cohen & Weisman 1991).  Though age-specific environmental dimensions have been suggested by several researchers during 1980’s to 1990’s, none of them focused on dying patients and their experience in hospice care environment, so the need for categorizing dimensions for hospice environment is evident. The objective of this study is to identify the Therapeutic Goals of hospice environment focusing on patients’ experience. This study employed a systematic literature review with an
approach developed by Hawker and colleagues in 2002. This study had considered a wide-ranging literature search: 7 electronic databases search (PubMed, PsycINFO, Social Science Citation Index, Science Citation Index, ProQuest Dissertations & Thesis, Avery, and Cochrane Library), reference list search, examination of literature recommended by relevant experts, and Google search for books, reports, and guidelines.  In total 48 literature included; 39 full text articles, 2 books, 5 guidelines, and 2 reports. The data has extracted from these literature onto a standard template (matrix) for comparison and analysis for coding and thematic development. The study identified eight themes as TGs which have direct influence on patients’ experience of hospice care environment: provide continuity of self, provision of access to nature, provision of privacy, facilitate social interaction, maximize safety & security, provision of autonomy, regulate stimulation, and
provision of spiritual care. These goals reflect two characteristics; each expresses a basic or derived major patient’s need, and a potential environmental facilitator for the satisfaction of the need (Lawton et al. 2000). As the physical environment of hospice has significant impact on the patients’ quality of life and the possibility of a good death (Cohen et al. 2001), these TGs have a positive effect on patients’ lives.

In Solidarity. Hospice-Palliative Care in Poland, Gdansk, 2015, 437 pages.

More than 400 palliative and hospice centres, thousands of employees and volunteers forming interdisciplinary teams caring for the terminally ill and their families, and many thousands of people who have benefited from this care – such is the outcome of the 30 years’ plus existence of the hospice movement and palliative medicine in Poland.
Those years were filled with endeavours to give people approaching the end of their lives the chance of dying with dignity, without pain, surrounded by their close ones, with no regard for their age, sex, religion or wealth. These were years of co-operation, combining professional medical and non-medical assistance with the commitment of volunteers, while preserving the common goal of interdisciplinary teams.
The editors’ intention was to present the history of the establishment of hospice-palliative care in Poland as broadly as possible: by identifying its sources and inspirations, through the personal experiences of people involved in end-of-life care and the stories of particular palliative and hospice centres and the organizations supporting them. We encourage you to read the content of this unique publication.

A. Janowicz, P. Krakowiak, A. Stolarczyk [ed.], In Solidarity. Hospice-Palliative Care in Poland, Gdansk 2015, 437 pages, ISBN: 978-83-9400626-3-7.
More information about online open source in English: http://www.fundacjahospicyjna.pl/en/activities/social-education/in-solidarity

Poster for upcoming inaugural symposion for the Interdisciplinary Research Cluster 'Death as Transformative Experience', Friday, Jan. 14th, 2022, 1:30-5:00 p.m. CT (Winnipeg). Organisator: University of Manitoba Institute for the Humanities
Speakers:  Simone Mahrenholz: Death and Self-Transformation - Introduction to the Cluster and Key Philosophical Motives
Harvey Chochinov: Death, Dying and Dignity in the Terminally Ill,
George Toles: The Theatre of Aloneness: The Depiction of Grief in Todd Field’s In the Bedroom
Colette Simonot-Maiello: Death in Sonic Detail: Madness and Death in Francis Poulenc’s Dialogues des Carmélites
For the zoom-link: please email simone.mahrenholz@umanitoba.ca

Abstract
Context: Discussing death and dying with the elderly in nursing homes, assisted living, hospitals, private homes, hospice centres, and community centres is an important aspect of End of Life (EOL)-care. Very few Health Care Professionals (HCP), engage in these conversations, have limited training and/or are comfortable with the process. Friends and family too, are reluctant to participate and when they do, it is too late.
Objective: To assess whether discussions on death and dying could ease depression and anxiety, and promote general well-being for the elderly > = 70, living at home, or in nursing homes, in assisted living, or community centres, in hospice or palliative care, in hospitals or emergency care.
Methods: A scoping review of studies in the U. S. and in the Netherlands.
Results: From a total of one hundred and fifty nine (59) studies, twenty-five (25) studies passed the selection criteria. Twenty-one (21) were for the U. S., and four (4) were for the Netherlands. The selected studies were analysed and categorized by themes, and then summarized based on the outcome of a positive view on death discussions, negative view on death discussions or an ambiguous view on death discussions.
Conclusion: A scoping review of the selected studies points to a dearth of material on the subject of death and dying with the elderly. There were only two studies that measured the emotional well- being of the patients and the families. The rest pointed to fear, discomfort, anxiety, and lack of financial support for the HCP in EOL care, lack of training and a need for ethical legal discourse. In the Netherlands, where ethical and legal issues are not barriers to discussions, only four (4) studies were identified and out of those four (4), one reported on patients’ weariness with life and thus they chose Physician Assisted Suicide (PAS). The rest encouraged discussions on death and dying early in life, but did not report on well-being or general lack of anxiety, as an outcome of discussions on death and dying or lack thereof.
Keywords: End-of-life care, Advance Care Planning, death, dying, elderly

The aim of this article is to use data from Belgium to analyse distinctions between palliative sedation and euthanasia. There is a need to reduce confusion and improve communication related to patient management at end-of-life specifically regarding the rapidly expanding area of patient care that incorporates a spectrum of nuanced yet overlapping terms such as palliative care, sedation, palliative sedation, continued sedation, continued sedation until death, terminal sedation, voluntary euthanasia, and involuntary euthanasia. Some physicians and nurses mistakenly think that relieving suffering at the end of life by heavily sedating patients is a form of euthanasia, when indeed it is merely responding to the ordinary and proportionate needs of the patient. Concerns are raised about abuse in the form of deliberate involuntary euthanasia, obfuscation and disregard for the processes sustaining the management of refractory suffering at the end of life. Some suggestions designed to improve patient management and prevent potential abuse are offered.

Background: A number of studies have been conducted which have investigated the expressed needs and experiences of palliative care patients and their families (Clarke & Seymour, 2010).Whilst a pattern of universal needs appear to exist, previous research suggests that these needs and experiences often manifest differently for individuals due to demographic and geographic factors. Robinson, Pesut, and Bottorff (2010) suggested that the nuances of living in specific rural communities may influence how patients and informal caregivers make sense of their needs, due to geographical barriers associated with rural areas such as distance and poor access to services. Adding credence to suggestions made by Longley, Llewellyn, Beddow, and Evans (2014) that more research needed to be conducted placing focus on understanding the needs and experiences of patients and caregivers, within the specific rural context of Mid-Wales.
The use of telehealth has emerged as a potential way of overcoming such geographical barriers (Rural Health Implementation Plan, 2009). The majority of literature focusing on the feasibility and acceptability of the adoption of telehealth in rural health care has been concentrated on the use of remote monitoring of patients living with chronic conditions (Finkelstein, Speedie, Demiris, Veen, Lundgren, & Potthoff 2004; Whitten, Doolittle, & Makert, 2005). A gap is evident in the literature focusing on the feasibility and acceptability of telehealth adoption in rural palliative care (Johnston, Kidd, Wengstrom, & Kearney, 2011), and use of alternative platforms such as the use of videoconferencing to provide remote psychosocial support (Kotb, et al., 2015).

Aims: The aim of the thesis was to explore at a contextual level, the needs of palliative care service users within the specific rural locality of Mid –Wales; and whether telehealth represented a feasible way to overcoming the challenge of satisfying the needs of a group of patients living in the rural county of Ceredigion in Mid-Wales.

Methodology: To address the aim of the thesis, three individual studies were conducted. The first study used an idiographic approach to explore informal carers’ experiences of palliative care provision in a rural area (Chapter 4). The second study explored the latent constructs which underpinned health care professionals’ perceptions of telehealth implementation within palliative care provision (Chapter 5). The final study used a longitudinal qualitative design to explore the experiences of patients and carers who had telehealth equipment incorporated into their palliative care provision (Chapter 6). Each of the studies utilised the use of semi-structured interviews and were analysed using Interpretative Phenomenological Analysis (Chapters 4 and 6) and inductive thematic analysis conducted at the latent level (Chapter 5).

Findings: Consistently across the studies, a number of key findings were identified which centred upon the importance of relatedness and autonomy needs within a palliative care context. These overarching needs manifested differently across the stakeholder groups. Within Chapter 4 the need for relatedness amongst informal caregivers was discussed through the importance of accessing health care professionals who shared similar rural values, and the need to maintain close connections with members of their community. The need for autonomy was made sense of through the importance placed in maintaining an active role in decision making. Health care professionals (Chapter 5) indicated that given the lack of human touch in remote consultation, telehealth may negatively impact their emotional understanding of their patients and as such pose a potential threat to satisfying relatedness needs. With regards to autonomy, however; health care professionals suggested that telehealth had the potential to empower patients to take a more active role in their health care decisions. In contrast to health care professionals, patients made sense of their experience of using telehealth to access psychosocial support (Chapter 6) as one that facilitated both a relatedness and autonomy supportive environment. Patients made sense of this through the removal of a perceived power divide they had previously experienced when travelling to the hospital to receive support.

Conclusion: The thesis presents a number of novel contributions to the existing literature focusing on the acceptability and feasibility of the use of telehealth in palliative care. This included the focus placed on an underrepresented modality of telehealth in the form of videoconferencing (Kotb, et al., 2015); and the applicability of Self-Determination Theory (Deci & Ryan, 1985) to understand the needs which must be satisfied for telehealth to be accepted by stakeholders. The findings of the thesis also suggest that there is a divergence between health care professionals’ and patients’ acceptability and perceived feasibility of the use of telehealth within a palliative care context.

Title:
Photo Making in Hospice: Can the Process of Constructing Portrait Photographs Restore the Changed Self-image that Accompanies the Diagnosis of a Life-limiting Illness?


Author(s):

Mortimer A.J.1,2, Day R.1, Broom K.2, Perkins P.1,3


Institute(s):

1Sue Ryder Leckhampton Court Hospice, Day Hospice, Cheltenham, United Kingdom, 2Birmingham City University, Institute of Art and Design, Birmingham, United Kingdom, 3Gloucestershire Hospitals NHS Foundation Trust, Palliative Medicine, Cheltenham, United Kingdom
Presenting author email address: ami.mortimer@virginmedia.com


Background:
Photography and self-portraits have been used in healthcare, yet no study has documented the experiences of hospice patients' participation. Our hospice has recently started to offer patients the option to make self-portraits/portrait photographs.

Aims:
To explore the lived experiences of day hospice patients participating in the self-directed photographic portraiture experience.

Methods:
Audio-taped semi-structured interviews were conducted using a topic guide. Interviews were transcribed and analysed using narrative analysis. Seven respondents were interviewed: three patients, two hospice staff observers and two photographers. Fourteen interviews were conducted - each participant was interviewed before and after the photographic session.

Results:
The following themes were identified during analysis:
The participants constructed photographs to represent who they are rather than focussing on their illness.
Participants chose not to reinforce the more negative elements of illness progression but rather to accept them.
Life-limiting illness, ageing and treatments damage the patient's sense of self. This may be experienced as a form of grief or loss.

Conclusion/discussion:
Patients provided unique insights into the experiences of changes that come with life limiting illnesses, articulating losses that resulted. In all cases the patients felt a profound difference between the image they held of themselves and the photographs they created. Patients said they benefited from this methodology of reflective photographic self-portraiture. This study straddles both arts and healthcare. The results have helped shape this intervention for future patients.

Raising awareness of the possibilities ETT has for patients of all ages in the last stages of their lives. If something this simple can help and improve the quality of life of these patients we should not refrain from using.  The survey recently published by Banerjee  and colleagues triggered this Clinical Note. The aim of their United Kingdom focussed survey was to gather views of healthcare professionals on the attitudes, beliefs, and clinical use of ETT for managing symptoms and complications in cancer. The outcome found was that of the 143 responders who worked in the cancer care 72% did not use ETT and 76% were not even aware of ETT as a treatment option.

In the context of palliative care, characterized by a multi-professional approach that deals with the overall care of the sick person and his family, the assessment of Social Work is part of a broader assessment of needs, aimed at activating interventions aim to encourage continuity of care and collaboration between the different services of the network. The research realized in a Health Agency of the Veneto Region, in the period September 2012-February 2014, was used to know and develop the social skills in the field of protected discharge and draw up a communication protocol, which was adopted by the entire professional community of social workers, to taking charge of the patient with complex chronic and palliative care program. The results showed that a shared mode and participatory evaluation of the need may support home care, reduce residential projects and facilitate the proper use of places in hospice. Introduzione: servizio sociale e cure palliative I cambiamenti socio-demografici e le connesse variazioni dei bisogni chiamano, sempre più spesso, il servizio sociale ad intervenire nei contesti sanitari. L'integrazione socio-sanitaria, intesa non solo come collaborazione tra due comparti ma focalizzata a considerare la persona come un unicum (Bissolo e Fazzi, 2005), da vari decenni ormai, è uno degli obiettivi prioritari del sistema dei servizi alla persona. La necessità di integrare gli aspetti sanitari della malattia con quelli so-ciali fa sì che il professionista assistente sociale entri a far parte delle équipe Copyright © FrancoAngeli N.B: Copia ad uso personale. È vietata la riproduzione (totale o parziale) dell'opera con qualsiasi mezzo effettuata e la sua messa a disposizione di terzi, sia in forma gratuita sia a pagamento.

Nous nous intéresserons, dans cet article, à la dimension temporelle de la "bonne mort" en USP. L'institution, en raison de son organisation rationalisée du travail, produit une norme temporelle d'environ 21 jours, en moyenne. Il ne s'agit bien entendu que d'une moyenne, mais elle suggère une durée optimale au cours de laquelle  le patient est invité à cheminer et à préparer sa propre mort.
L'article souligne comment les attentes de L'institution peuvent être troublées  par la présence de patients presses de mourir et qui ne sont pas déterminés  à attendre l'échéance manageriale de L'institution.  Enfin l'article décrit la manière dont L'institution s'efforce d'adapter ses usagers à cette durée idéale.

Background: The use of compassionate extubation (CE) to alleviate suffering by terminating mechanical ventilation and withdrawing the endotracheal tube requires professional adherence and efficiency. The Hospice Palliative Care Act, amended on January 9, 2013, legalizes the CE procedure in Taiwan.
Methods: From September 20, 2013 to September 2, 2014, the hospice palliative care team at a community hospital received 20 consultations for CE. Eight cases were excluded because of non-qualification. Following approval from the Ethics Committee, the medical records of the remaining 12 patients were reviewed and grouped by the underlying disease: A, “terminal-stage cancer”; B, “non-cancer out-of-hospital cardiac arrest”; and C, “non-cancer organ failure”. Time to extubation using a cut-off at 48 hours was assessed.
Results: The mean ages of patients (standard deviation) in groups A, B, and C were 66.3 (14.9) years, 72 (19.1) years, and 80.3 (4.0) years, respectively. The mean number of days of intubation at consultation were 6.8 (4.9), 7.3 (4.9), and 179.3 (271.6), respectively. The mean total doses of opioids (as morphine-equivalent dose) in the 24 hours preceding CE were 76 (87.5) mg, 3.3 (5.8) mg, and 43.3 (15.3) mg. The median times from extubation (range) to death were 97 (0.2–245)
hours, 0.3 (0.2–0.4) hours, and 6.1 (3.6–71.8) hours. Compared to those requiring 48-hour preparatory time, patients requiring 48 hours to the moment of CE were younger (62.8 years vs
75.5 years), required a mean time of 122 hours (vs 30 hours) to CE (P=0.004), had shorter length of stay (33.3 days vs 77.8 days), required specialist social worker intervention in 75% of cases (vs 37.5%), and had a median duration of intubation of 11.5 days (vs 5.5 days).
Conclusion: CE was carried out according to protocol, and the median time from extubation to death varies determined by the underlying disease which was 0.3 hour in patients admitted after out-of-hospital cardiac arrest and 97 hours in patients with advanced cancer.

Interdisciplinary and comparative research aims to establish: (a) if the challenge in differentiating between short-term and chronic psychological pain is legally problematic for the Canadian justice system; (b) if chronic, irremediable depression constitutes severe, intolerable, enduring suffering satisfying the disability requirement permitting euthanasia; (c) if chronic depression meets the grounds for mental disability classification; (d) if the application of “terminality” in Carter v Canada differs from the practical, legal interpretation by Canadian courts (e.g., a recent Alberta Court of Appeal decision); and (e) the medical, ethical, moral, and legal implications for physicians, patients, clinicians, and the legal community.

Este trabajo tiene como objetivo reconstruir la trayectoria histórica del surgimiento y desarrollo del movimiento hospice a partir de las críticas que se le realizaron al sistema biomédico en el periodo de posguerra. Este análisis historiográfico busca, más que ser una descripción de sucesos cronológicamente ordenados, dar alguna explicación respecto de cuáles han sido las condiciones de posibilidad que permitieron el nacimiento de este tipo de fenómenos, esto es, una filosofía de cuidado en el final de la vida asociada a una propuesta de humanización de la salud que toma como ejes fundamentales los conceptos de dignidad y persona. Para lograr esto se intentará, por un lado, dar cuenta de cómo el desarrollo del movimiento hospice se inscribe en procesos estructurales más amplios de cambio de los significados sociales y actitudes frente a la muerte — para lo cual es fundamental la vinculación con los análisis histórico-culturales realizados por Philippe Ariès (2008;2011) — y, por el otro, mostrar la vinculación existente entre este fenómeno y el desenvolvimiento de otro tipo de movimientos durante el periodo de posguerra, tales como los Cuidados Paliativos, la bioética (tanto en la práctica clínica como en la investigación con seres humanos) y aquellos ligados a la promoción del respeto por los derechos de los pacientes (mayoritariamente ligados a la práctica de la eutanasia).

The aim of this paper is to show the inherent contradiction in the Belgian euthanasia practice. While stressing patient's autonomy, medical professionals exhibit paternalism in deciding the patient's fate. First, background information is provided. Then the 2014 Belgian Society of Intensive Care Medicine Council Statement Paper will be considered. Concerns are voiced about euthanizing people who fail to find meaning in their lives, including those who underwent unsuccessful sex-change operation and blind people, euthanizing patients who did not give their consent, and euthanizing people with dementia. Finally, some suggestions designed to improve the situation are offered.

Aim
The aim of this study was to explore any differences between nurses working in nursing home and home‐based care in their experiences regarding relatives' ability to accept the imminence of death and relatives' ability to reach agreement when deciding on behalf of patients unable to consent.

Design
An electronic questionnaire‐based cross‐sectional study.

Method
An electronically distributed survey to 884 nurses in long‐term care in Norway in May 2014. A total of 399 nurses responded (45%), of which 197 worked in nursing homes and 202 in home‐based care.

Results
Nurses in home‐based care, more often than their colleagues in nursing homes, experienced that relatives had difficulties in accepting that patients were dying. Nurses who often felt insecure about whether life extension was in consistency with patients' wishes and nurses who talked most about life‐prolonging medical treatment in communication with relatives more often experienced that relatives being reluctant to accept a poor prognosis and disagreements between relatives in their role as proxy decision makers for the patient.

Caregiver suffering and burnout amongst professionals in palliative care settings are increasingly discussed phenomena in the media and the specialized journals alike. However, we still lack anthropological understandings of the ways this distress is related to the dynamics, practices and representations of palliative care institutions. This article, based on a 2011-2012 fieldwork conducted in one of the 27 independent hospices of the province of Quebec, aims to contribute to the question in showing how the ways the staff conceive their roles in caring for the dying. We aim to explore how the suffering is related to the nature of these roles and to the institutional framework, the Good Death. Within the institution that was the focus of this research, caregivers must carry out the double-task of protecting themselves psychologically (finding the appropriate distance) and negotiating the institutional and ideological pressure to embody the palliative mission. If the non-monetary rewards or sources of satisfaction related to the exercise of the profession are not sufficient – or simply missing for logistical reasons, temporal reasons or others – it is very likely that end-of-life work will become an unbearable burden for certain caregivers and will lead to resignations.

Abstract
Purpose This study explores the experiences of individuals
in early, middle, and late adolescence dying from cancer.
Place of death, medications used at end of life (EOL), and
discussions prior to death are examined.
Methods Data were obtained from a retrospective review of
medical charts from 103 adolescents who died of cancer
between 2000 and 2005.
Results Adolescents with leukemia/lymphoma were relatively
more likely to die in an intensive care unit (p=0.028)
where cause of death was more likely to be treatment related
(p<0.001), and EOL discussions more likely to
occur in the last 7 days of life (p=0.002). Anxiolytic use
was significantly higher during late adolescence (p=0.037).
Conclusions Adolescents have unique developmental needs
that should be considered at EOL. Timing of EOL
discussions occurred very close to death for a significant
number of adolescents, allowing very little time to
psychologically prepare for death.