Search

End-of-life (EOL) care is a crucial public health issue in Hong Kong, and one in which the community social service sector has become increasingly involved, as healthcare policy in the city shifts towards greater emphasis on social relationships in non-medical forms of EOL care. This study used abductive grounded theory methodology to illustrate the dynamics and mechanisms involved in social relationships between dying people (and their families), volunteers, and professionals in community-based social service agencies in Hong Kong. The aims are a) to understand how social relationships influence the experiences of dying people and their families, and b) to engage theoretically with concepts of social capital and compassionate communities to explicate the dynamic and relational processes involved in this phenomenon. Fourteen in-depth interviews with practitioners and two service users affiliated with two community-based EOL care agencies in Hong Kong were conducted. Findings inform a parsimonious three-stage model of social capital development in which relationships between service agency workers and families address a key precondition of social capital through establishing trust, facilitating the accessibility of social capital through cultivating mutuality, and mobilising social capital through collaborating in community EOL care. These processes in turn mitigate community detachment in the EOL experience. [ABSTRACT FROM AUTHOR]

Introduction Oncologists have a central role as 'gate keepers' in terms of referring patients to palliative and hospice care. This role is even more important in countries such as the Czech Republic and Slovakia, where palliative care is still developing. The aim of this study was to assess the associations between self-reported knowledge, attitudes, and behaviour of Czech and Slovak oncologists towards hospice care and their attendance of palliative care training. Methods The method was an anonymous online questionnaire created by the LimeSurvey software. All members of national Oncological Society in the Czech Republic and Slovakia were invited to participate. Eighty-four oncologists completed the survey. Results Czech and Slovak oncologists' attendance of palliative care training is significantly associated with their attitudes and behaviour towards hospice care. Respondents who had any additional palliative care training felt more knowledgeable and were more likely to discuss hospice care with their patients and families than oncologists without such training. Additionally, they also found delivering bad news less difficult and referred more terminal patients to hospice care than those with no training. Conclusion Training in palliative care can influence how oncologists discuss hospice care and refer their patients to such care. This should be reflected in curricula for medical students and in postgraduate education for oncologists and other health care providers, especially in countries with less integrated palliative care such as the Czech Republic or Slovakia. [ABSTRACT FROM AUTHOR]

Introduction Dying in the preferred place of death is considered to be one of indicators of quality of end-of-life care. Research into health care professionals' knowledge of patients' preferences for place of death is therefore important. The aim of this study was to assess the difference between health care professionals and the general public in their views on where do people not want to die. Methods Secondary analysis of data from a representative survey of the general population and a convenience sample of health care professionals in the Czech Republic. Respondents from the general population were asked where they would not like to die and health care professionals were asked where they think the general population does not want to die. Sample consisted of 1095 respondents from the general population and 1006 health care professionals. Health care professionals were physicians (73.3%) and nurses (26.6%). Results Long-term care facilities and hospitals were identified as the most undesirable settings for place of death. A significant difference in views on hospices was identified: 6% of health professionals compared to 42.2% of the general population (P < 0.001) indicated a preference for people to not die in hospice. Discussion The most unwanted settings for place of death were places where most people die. More research is needed to understand the factors influencing preferences and should feed into policy making. Better promotion of hospice care should be developed to communicate to the general public the differences between hospices and other institutions. [ABSTRACT FROM AUTHOR]

Objective To assess the extent to which a grants programme to fund improvements to English inpatient hospice buildings achieved its goals of involving and directly benefiting older people. Method Qualitative content analysis was undertaken of all grant application forms which (a) resulted in funding, and (b) proposed to refurbish or replace inpatient hospice buildings. Data were extracted, and themes identified, on the nature and extent of the benefits envisaged for older people, and how older people were involved in the proposed building projects. Results Of 227 grant applications, 139 (from 111 hospices) met the inclusion criteria. Four categories of building improvement were identified: interior decoration or equipment (n = 386, or 36% of the total); public spaces (n = 291, or 27%), private spaces (n = 283, or 26%), and health and safety (n = 116, or 11%). These improvements, while generally beneficial, were rarely targeted at older people. Most grant applicants stated that they had consulted service users, but only 13 specified that they consulted older people. Limited information was supplied about the methods or findings of these consultations. In 15 grant applications, older people were not mentioned at all. Conclusions Older hospice inpatients, their relatives and advocacy groups should be involved more fully in decisions relating to the physical environment of care. Staff who prepare funding bids should receive training in conducting consultations with service users, and identifying and evaluating other relevant evidence. To ensure a consistently high standard of environmental provision for older people in hospices, evidence-based assessment tools and guidelines should be developed. [ABSTRACT FROM AUTHOR]

Background The background literature suggests that recruiting patients with advanced cancer from hospice day care to participate in a research study may be challenging. Aim This paper describes such challenges and considers whether those faced by researchers in this study reflect those recorded in the literature. Method Six hundred and twenty-six patients with advanced cancer from hospice day care units in the north-west region of England were recruited as part of a multi-centre mixed methods study to determine the prevalence, aetiology, and natural history of depression and demoralization. Results A number of challenges were reported (i) data collection sometimes presented researchers with ethical dilemmas, although the ability to respond appeared to be influenced by disciplinary background and training, (ii) emotional impact of the research may force researchers to face a variety of emotional responses, and (iii) dilemmas relating to the setting and maintenance of role boundaries included determining the level of emotional connection required to establish relationships of trust between researchers and participants, and imbalances in power and status. Discussion Many of the challenges faced by researchers to recruit patients with advanced cancer from hospice day care to participate in this research study were similar to those described in the literature. Conclusion Most researchers reported that the overall experience was positive, although a number of moral and ethical dilemmas required ongoing reflection and continuing support and supervision to resolve. It is hoped that other researchers engaging in similar forms of research in the future can learn from the challenges that have been identified. [ABSTRACT FROM AUTHOR]

The present study sought to explore the meaning-making people engage in with regard to their experience of sensing the presence of the deceased and to focus on the experience of sensing the presence of the deceased through one of the sensory modalities. Interviews were carried out with eight bereaved adults. Transcripts were analysed using interpretative phenomenological analysis. Analysis identified four superordinate themes. ‘There’s only one person that ever did that’: Sense of presence as a unique and personally distinctive experience referred to participants’ descriptions of the nature of the experiences reflecting the character of the deceased person or aspects of their relationship. ‘I do believe in all that, I’ve experienced it beforehand’: Prior beliefs and understanding sense of presence consisted of the process participants used to try and make sense of their experiences. ‘It’s not frightening anymore’: The changing emotional impact of the experience explored the different emotional impacts of the experiences. ‘They will look at you like you’re crazy’: The importance of sense-of-presence experiences being validated by others referred to concerns about being stigmatised by others as a result of the experiences as well as positive self-perceptions. The themes are interpreted in the context of previous literature and novel ideas about meaning-making and positive self-perceptions are highlighted. Limitations and suggestions for future research are discussed. [ABSTRACT FROM PUBLISHER]

Researchers have reported that bereaved people often continue to sense the presence of the deceased. A particular collection of such experiences can be identified as instilling a perception that the deceased person is in some manner present in the company of the bereaved person. The aim of the current review was to synthesise the results on this topic to provide a comprehensive over-view for practitioners working with bereaved people who report these experiences. The studies were reviewed in terms of the nature of the experiences described, the provision of explanatory models to understand the significance of these experiences, describing any culturally specific aspects of these experiences, discussion of the personal impact of having the experiences, and for recommendations of how people who have these experiences can be supported. [ABSTRACT FROM AUTHOR]

The European Association for Palliative Care (EAPC) represents 46 national associations from 27 European countries and more than 50 000 health care workers and volunteers working or interested in palliative care. The area of influence includes 23 developing countries, most of them in Eastern Europe and Central Asia. Even though many countries are improving rapidly in their economy and the development of their health care systems, there still are major gaps between Western and Eastern European countries. EAPC has produced guidance on different areas of palliative care from symptom assessment to organization of care. The congresses and research congresses as well as the website (www.eapcnet.eu) are renowned platforms for dissemination and exchange of information. The research network and a number of task forces are active on a wide range of topics. Members from developing countries can benefit from these activities, and, for example, pan-European comparisons such as the Atlas of Palliative Care in Europe have been used with good effect for advocacy work in individual countries. EAPC actions such as the Budapest Commitments and the Venice Declaration also have been useful for developing countries. However, more specific support is needed for the developing countries. EAPC has set up a newsletter for Eastern European and Central Asian countries that is available in English and Russian, and more recently also a Russian website (www.eapcspeaksrussian.eu). A survey on information needs is currently under way to provide a basis for more tailored provision of information and knowledge. More specifically the ATOME project (Access to Opioid Medications in Europe) funded in the seventh Framework programme of the European Commission works at the improvement of access to opioids for medical and scientific use in 12 East and South European countries. As a first central project goal, a revised version of the World Health Organization policy guidelines on ensuring balance in access to controlled medicines has been released only recently. The European Association for Palliative Care produces high-quality expert advice, with congresses, publications, the website and various other activities. Palliative care professionals from Eastern European and Central Asian countries benefit from these activities. In addition, EAPC has initiated additional activities with a focus on developing countries, ranging from information needs assessment to specific research projects. The range of activities of EAPC is only possible with the continuing input of palliative care professionals from all over Europe. Palliative care professionals from developing countries are invited to contribute and share the successes of EAPC. [ABSTRACT FROM AUTHOR]

Introduction: Harold Shipman, a general practitioner (GP) working near Manchester in England, is thought to have killed 250 of his patients by diamorphine overdose between 1975 and 1998. Opiates are recommended for relieving dyspnoea in end stage chronic obstructive pulmonary disease (COPD). Little is known about the effect of the Shipman case on clinician attitudes to prescribing of opiates in advanced COPD. Subjects and methods: Focus groups were held with a total of 39 health professionals in primary (n = 3) and secondary care settings (n = 2) in two sociodemographically contrasting areas of England. Results: Participants identified that the experience of dyspnoea in end-stage COPD was often distressing for patients, their families and their professional carers. Whilst opiates were recognised to be effective in relieving dyspnoea, the Shipman case, and associated fears of litigation, was identified as the key barrier to prescribing. Whilst this was seen as a particular problem within primary care settings leading, for example, GPs to admit patients to hospital rather than prescribe opiates, it was also considered an issue within acute hospital settings. Of particular concern to participants was recognising when an exacerbation was 'terminal' and hence opiate prescribing appropriate. Conclusions: There is evidence to show that opiates are effective in managing end-stage dyspnoea in COPD without hastening death. However, participants did not perceive this to be the case and expressed considerable anxiety about appropriate prescribing in this situation. Given the significant burden of dyspnoea on patients with advanced COPD, there is an urgent need for appropriate training to increase clinician confidence regarding opiate use in this patient group which is sensitive to the concerns raised by the Shipman murders. [ABSTRACT FROM AUTHOR]

This paper examines the question of why patients decline treatment for cancer. Though small in number, patients with cancer who refuse treatment pose a problem for physicians and other health professionals managing their care. From the medical perspective such a decision appears irrational, and research has been conducted to try to identify features of patients and their situation that predispose this outcome. Research has also examined communication strategies used by doctors to influence patient decision making. The identification of these features supports an individualist perspective on this issue, even in the literature that seeks to comprehend the patient's point of view. Making use of a narrative perspective involving illustrative cases drawn from published research, this paper proposes that such decisions need to be understood in terms of patients' relationship to medicine, something that is changing with respect to medicine's weakened authority and the growth of a consumerist ethos. Second, the emergence in society of competing ideologies provides the possibility for alternative value sets in which the meaning of life can be assessed. This means that what seems an individual act of defiance is actually one of the highest social degree. To see treatment refusal in this way has implications for the mismatch between professional and patient preferences. [ABSTRACT FROM AUTHOR]

Introduction: Distress is an important problem in palliative care. However, current models of clinical practice emphasise symptom-focused assessment of need, raising problems with integrating complex, and potentially conflicting, assessments of experience. An alternative perspective views distress as the result of the disruptive impact of illness on people's efforts to continue living their daily lives. We explored whether this account of distress may offer new insights into models of clinical care. Subjects and methods: Qualitative, phenomenographic analysis of interviews with a purposive sample of 19 adults with advanced cancer (eight men, 11 at high risk of depression) to explore experiences of distress in the context of on-going efforts of daily living. Results: Distress resulted from threats to aspects of themselves which mattered most to people. By achieving a balance between these disruptive effects and individual supportive capacity, most people were able to maintain continuity of daily life. Distress was identified by some as a productive emotion driving change. However, exhaustion undermined this self-capacity leading to fracturing of daily life, profound distress, and the need for external help to restore daily living. This is summarised in our self-integrity model (SIM). Conclusions: Understanding distress in the context of the effort of daily life, rather than individual symptoms, may support a holistic assessment of need; the assessment process itself acting as a support for self-agency. A clinical trial of symptom-based versus SIM-informed assessment of need could support development of an individual-focused, holistic assessment of need. [ABSTRACT FROM AUTHOR]

Bereavement support services are recognised as an integral part of hospices and palliative care services. Exploratory surveys on the nature of such services have been conducted in recent years in several countries, including the USA, UK and Australia. The purpose of this paper is to compare the main findings of these surveys and to offer preliminary suggestions on how to improve this component of care both within and across these three countries. Through this comparison, a number of common aspects of service delivery were highlighted. Common difficulties were also found, including low numbers of paid staff, variations in specialist training, insufficient levels of funding, and the lack of the use of validated bereavement assessment tools. Bereavement support is an important aspect of hospice and palliative care service delivery. In all countries, further research and policy development is required to address the common difficulties. [ABSTRACT FROM AUTHOR]

Objectives. As people face cancer and the end of life, the social, cultural and therapeutic role of food takes on an increasing significance. As part of a larger study involving older Chinese people resident in the UK, we investigated their beliefs about the influence of food on cancer and its role in supportive cancer care. Design. A two-phase qualitative research study involved older Chinese people identified via Chinese community groups. In phase one, 46 older Chinese people participated in seven focus group discussions. In phase two, semi-structured interviews were conducted in Cantonese or Mandarin with 46 different older Chinese people to elicit their understandings of the role of food in health and illness generally and specifically for those with cancer. Results. The analyses revealed four main themes: (1) food as 'therapeutic'; (2) food as 'risky'; (3) food as supportive and comforting; and (4) beliefs about the lack of culturally appropriate and acceptable food in hospitals. Expectations about the lack of Chinese food and the poor quality and perceived unsuitability of 'western' food were regarded as major concerns in relation to hospital admission. Discussion. Understanding the perceived cultural and therapeutic significance of food and its functions in social exchange is one important aspect of promoting supportive and end-of-life cancer care for minority communities. These views helped explain the diversity and salience of food use in illness for older Chinese people resident in the UK. [ABSTRACT FROM AUTHOR]

Objectives: To understand the knowledge, skills and confidence of doctors, nurses and other healthcare workers in delivering end-of-life care in community hospitals. Research design: A cross-sectional questionnaire survey was carried out to evaluate doctors', nurses' and other staff's self-reported knowledge and confidence in delivering general aspects of end-of-life care in six community hospitals in the South West and South East of England. Approximately 900 hours of non-participant observation was conducted. Participants: Staff associated with community hospitals were invited to complete a questionnaire and 346 questionnaires were distributed, with 125 returned (response rate 36%). The sample consisted of: medical staff (n = 31), nursing staff (n = 44), health care assistants (n = 22) and other professional workers (n = 28). Results: Staff reported having knowledge, skills and confidence in symptom control but had less expertise in psychological, spiritual and bereavement care. End-of-life care needs to be delivered by a multidisciplinary team. Our findings indicate that further education is required in psychosocial care. [ABSTRACT FROM AUTHOR]

Background: Few studies shed light on what motivates or discourages patients, carers and professionals for participating in user involvement activities. Aim: To identify motivational factors that affect the engagement of service users and professionals with user-involvement activities. Methods: As part of a larger scoping study of user involvement in palliative care, 51 semistructured interviews were conducted with service users, palliative care professionals and experts to explore experiences of user-involvement initiatives. Four user-involvement programmes were also observed. Data were analysed using a thematic analysis technique. A subsequent consultation meeting with 48 service users and professionals discussed the preliminary findings. Results: User involvement has been predominantly developed through a 'top-down' professional agenda. A few highly motivated individuals, both service users and palliative care professionals, are extremely influential in starting and maintaining user involvement. Reported benefits include personal satisfaction and status but barriers are tokenism and time pressures. [ABSTRACT FROM AUTHOR]

To date, there has been only limited research into the supportive and palliative care experienced by people with cancer and other life-limiting illnesses. There is an urgent need to improve our understanding of the problems faced by people whose lives are changed by serious illness, and to use our knowledge to build better and more responsive programmes of care. The preferences, choices, stories, and voices of those affected by life-limiting illness are now central to the development of more and better research in supportive and palliative care. CECo is a new collaboration between experts from many disciplines and backgrounds that over the next 5 years will work to enhance the quality and impact of research in cancer care by taking a fresh look at some challenging problems. Its goal is to use research evidence to change clinical practice and service organisation in ways that will improve the care of people affected by cancer and other serious illnesses. CECo involves leading universities and professional organisations as well as hospice and cancer services from across England. Its purpose is to raise the standard of research, generate new resources, and foster innovation. [ABSTRACT FROM AUTHOR]

Globally, there is a critical shortage of donor organs to meet the demands for human organ transplantation. An understanding of what motivates families to agree to donation is therefore essential to maximise organ availability. The “gift of life” is a popular discourse long associated with pro-donation and transplant activists, its use seemingly directed at heightening public awareness about the perceived benefits of organ donation. However the potential pressure and obligation implicit within such rhetoric could be detrimental to donor families. It has been suggested that the donation event is better represented as a “sacrifice” as this discourse acknowledges the suffering of the bereaved family and the possible difficulties encountered in their decision-making about organ donation. Drawing on data from three studies that explored the bereavement experiences of donor families, this paper examines the relative value of gift of life or sacrifice as discourses that contribute to a greater understanding of organ donor families' decision-making. We propose that the compelling nature of sacrifice and the manner in which it impinges on families' decision-making may help to explain the high refusal rates in populations that appear generally aware of the benefits of organ transplantation. Insights into the relative importance of gift of life or sacrifice to families when making decisions could potentially contribute to enhancing families' satisfaction with their decisions, improve support to families and increase the incidence of donation. [ABSTRACT FROM AUTHOR]

An introduction is presented to the issue on developments and concerns in organ donation and transplantation. Articles include Margareta Sanner on attitudes towards organ donation and transplantation in Sweden, Ruth Richardson on the history of human dissection, ranging from funeral customs to body snatching, and Alison Crombie and Patricia Franklin on living organ donation.

This paper outlines the broad key findings from a research project on UK childhood bereavement service provision, using eight organizational case studies. Despite a shared objective of 'helping bereaved children' services were very diverse. Three organizational types were identified with differing management and administrative structures, each of which had different implications for staff. Although the overall size and employment status (paid or unpaid) of the respective workforces varied, the number of staff who worked directly with children or their families was similar. Direct and indirect services were offered within a matrix of provision that focussed either on children or on families, and involved individual and/or group work activities. Obtaining sufficient funding presented services with immense challenges. Unless they were part of a larger 'host' organization with a continued commitment to childhood bereavement service provision, services were unable to rely on regular and long-term sources of funding. This can have a detrimental impact on the core business, and on the ability of the service to develop their provision. Improving and increasing research, audit and evaluation of childhood bereavement services would contribute to supporting the case for both individual services and for the childhood bereavement sector as a whole. [ABSTRACT FROM AUTHOR]

This paper seeks to explore the tension between professionalization and volunteerism in health care. It focuses on the role of volunteers who provide bereavement support services within hospices and palliative care services. The paper draws on evidence from a study of hospice bereavement volunteers conducted in New Zealand. Interviews with 34 co-ordinators, and questionnaires completed by 121 volunteers, from 26 hospices, provided data about the role played by bereavement support volunteers. Differences in the perspectives of co-ordinators and volunteers highlight the tensions between a professionalizing ethos and lay understandings of bereavement. Broader social factors, including the restricted social diversity among volunteers, the perceived value of the lived experience of loss relative to other sources of knowledge, cultural patterns of grief and mourning and asymmetrical power relationships between paid professionals and volunteers, affect how bereavement support services are planned and implemented. This paper proposes that a better conceptual understanding of the role of volunteers in helping others deal with loss and grief is needed. [ABSTRACT FROM AUTHOR]

This two-part study was undertaken to determine a) what questions bereaved children would like to ask a doctor; b) how a doctor responds to these questions; and c) the factors that may influence this process. The first set of data was collected by a retrospective sample of 121 questions posed by 99 children who had attended a residential grief support programme. These questions were sorted and later assigned to one of five categories, namely a) cause of death, b) life span, c) doctors, d) dead body and e) grieving feelings. The largest category identified was 63 questions (52%) relating to the cause of death. It is suggested that this partly, the result of the commonly held societal view that a doctor is the most appropriate person from whom to access this type of information. A subsequent detailed analysis of 35 more questions confirmed these findings. The second set of data was collected by observation, field-note taking, audio taping and later transcribing, the doctor responding to 35 questions posed by 24 bereaved children. A model of communication emerged where the doctor employed three phases within his response, namely a) validation, b) reflection and c) description. The significance of this model and the culture in which adults communicated acceptance and a desire to understand what the children were saying are discussed. The attributes and types of work involved for the doctor are also highlighted, particularly the emotion-focused questions, which appear more challenging than the biomedical questions. It is suggested that the doctor plays an essential role in helping a child understand 'how' and 'why' a person dies. Hence implications for practice and future research have been provided. [ABSTRACT FROM AUTHOR]

Lay representations of breast cancer were assessed by questionnaire in 268 healthy women. Factor analysis indicates that women's explanations of causes of breast cancer fell into four categories; stress, misconceptions, personal and environmental hazards, and contact. In addition, three types of treatments; dietary, surgical and psychological were identified. Women who regularly perform breast self examination (BSE) endorsed the necessity of surgical and psychological treatments. Women who did not use BSE tended to be older and believed that stress was a causative factor. These findings are discussed with reference to treatment choices and BSE education. [ABSTRACT FROM PUBLISHER]

Fifty-three patients with advanced cancer were studied prospectively for 6 months to assess whether the site and method of chemotherapy administration influence levels of anxiety and depression. Patients received chemotherapy either at home or in hospital. Cases of clinical anxiety (36%) and depression (27%) were highest in the hospital treated group during the middle period of therapy. Patients treated at home had a lower psychiatric morbidity for anxiety (21%) and depression (21%) at the same period. There was no statistically significant difference in the mean scores on anxiety and depression between the groups. Overall, anxiety was more prevalent than depression. This study indicates that a minority of patients with advanced cancer treated by chemotherapy experience measureable psychiatric morbidity. Counselling services should be provided for these women throughout treatment, not just at the outset. [ABSTRACT FROM PUBLISHER]

There has been little research conducted with terminally ill patients in the UK to date. This case study describes statements made by a palliative care patient during a face-to-face interview while he was being treated in a hospice. His comments illustrate his unhappiness within the hospice environment to an extent that could compromise his holistic management in this setting. We would suggest that the important aspects of patient care include not just the major palliation issues of symptom control and good communications, but also attention to the rituals of daily living of individuals pertaining to the environment. The atmosphere of the hospice, as experienced by patients through their interactions with staff members within the care setting, is seen to be a significant factor for good holistic care. Hospices may need to be more aware of the impact that every member of staff, both clinical and non-clinical, can make at each patient contact. Becoming more alert to the likes and dislikes of each patient as regards the substance of these contacts may allow hospices to avoid institutionalized care practices and instead to individualize the care they offer to a greater number of their patients. [ABSTRACT FROM AUTHOR]

The author reflects on the challenge of recruiting participants for palliative care research. The author references the study by Lynch and his colleagues within the issue, which revealed the challenges faced by a team of researchers who conducted a prospective longitudinal mixed methods study in Great Britain. She explains that the study showed the value of building relationships with all employees of hospices.

A letter to the editor is presented in response to the article "Ensuring Patient Access to Essential Medicines While Minimizing Harmful Use: A Revised World Health Organization Tool to Improve National Drug Control Policy" by A. M. Gilson et al.

The author focuses on better practices within the team of nursing and palliative care. He states that there is equal importance of all members of an interdisciplinary holistic care team of a dying person. He states that nurses' involvement in psychosocial and spiritual areas of care remains a hidden aspect of work.

In this article the authors reflect upon the discourse used in nursing documentation within medical records. They refer to a study conducted by M. Heartfield who stated that language in nursing documentation focus only on body parts and highlighted the absence of patient's or his family's voice. They comment that discourse in nursing documentation reflect the voice of physicians and stressed on the need of a parallel discourse to preserve the integrity related to nursing care.

The author reflects on the palliative care, a widely recognized public health issue in Great Britain. She cites services which have attempted to reach the most disadvantaged such as the small group of charity from Ireland. She added that the palliative care becomes the central aspect of public health and the crude indicators, do not incorporate quality markers. She also extends that people learn a lot from being attentive to personal and family narratives of dying.