scholarly journals Last Chance to Care: An Autoethnography of End-of-Life Care in Indonesia

Author(s):  
Petra Wessner

In Australia, palliative care is an accepted and expected part of contemporary health care service provision. Efficacious palliative care focusses on managing pain and symptoms and making the patient as comfortable as possible (World Health Organization Definition of Palliative Care (WHO, 2010). As well, palliative care focusses on the spiritual and psycho-social dimensions of life (Martina, 2017), providing the opportunity for the patient and their family to continue to be engaged with life and self-determined decision making throughout palliation. In this account, utilizing the qualitative research method of autoethnography the Australian author describes her experience of caring for her Indonesian father-in-law in the last week of his life. She explores emerging tensions associated with local end-of-life care and Western care which trigger deeper feelings associated with losing a loved one, complicated by the recent and sudden loss of her own parents. Narration is a powerful tool for capturing the verisimilitude of everyday experiences, evoking in the reader a powerful resonance into a very personal inner life which is often not spoken about in academic texts. This account, a cultural story of dying in East Java, Indonesia, also provides insight into the author’s expectations, as an Australian and concludes with some reflections about the emerging position of palliative care services in Indonesia.

Author(s):  
LaVera Crawley ◽  
Jonathan Koffman

This chapter attempts to identify ‘differences that make a difference’ when individuals and groups negotiate institutions and practices for palliative and end-of-life care. Two influences on the practice of palliative care-immigration and health disparities-are examined. The World Health Organization definition of palliative care specifies two goals: improving quality of life of patients and families and preventing and relieving suffering. It identifies three ‘colour blind’ strategies for meeting those goals: early identification, impeccable assessment, and (appropriate) treatment. Lastly, the definition addresses four domains of care: (1) problems related to pain, (2) physical conditions, (3) the psychosocial, (4) and the spiritual. This chapter specifically addresses these goals, strategies, and domains in relation to delivering quality palliative care in cross- or multicultural settings.


Author(s):  
Jayne Wood ◽  
Maureen Carruthers

Specialist palliative care services originally focused on improving the quality of life for patients with a diagnosis of cancer in the terminal phase of their illness. However, organizations, such as the World Health Organization, supported by recent national strategies, such as the End of Life Care Strategy (United Kingdom, 2008), promote the early integration of specialist palliative care into the management of patients with incurable disease, irrespective of the diagnosis. The primary goal of the intensive cardiac care unit is to help patients survive acute threats to their lives. However, the suddenness and severity of illness, particularly when associated with an underlying cardiological diagnosis, often means that the provision of optimal specialist palliative care is challenging. This chapter addresses key issues relating to the provision of specialist palliative care in the challenging and complex environment of the intensive cardiac care unit, including symptom control, end of life care, decision making, and communication. The benefits of multidisciplinary working for effective quality improvement in patient care and best support for patients, families/carers, and staff are also addressed. The importance of interdisciplinary working is highlighted, and, by embedding the principles of holistic care into daily practice, the intensive cardiac care unit can ensure that patients and their families/carers receive the support they need in a timely manner from individuals who are well supported in what is often considered to be one of the most challenging medical environments.


2011 ◽  
Vol 29 (15_suppl) ◽  
pp. 9135-9135
Author(s):  
W. Gonsalves ◽  
T. Tashi ◽  
T. Davies ◽  
S. Ortman ◽  
R. Thota ◽  
...  

2017 ◽  
Vol 16 (3) ◽  
pp. 260-268 ◽  
Author(s):  
Yoko Naoki ◽  
Yoshinobu Matsuda ◽  
Isseki Maeda ◽  
Hideka Kamino ◽  
Yoko Kozaki ◽  
...  

ABSTRACTObjective:Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.Method:Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.Results:Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = −0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = −0.563, p = 0.01). Several burden items—including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else—were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.Significance of results:Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.


2003 ◽  
Vol 12 (3) ◽  
pp. 279-284 ◽  
Author(s):  
N. YASEMIN OGUZ ◽  
STEVEN H. MILES ◽  
NUKET BUKEN ◽  
MURAT CIVANER

Most physicians confront the moral and technical challenges of treating persons who are coming to the natural end of their lives. At the level of the health system, this issue becomes a more pressing area for reform as premature death decreases and more people live a full life span. Well-developed countries and international organizations such as the World Health Organization (WHO) and the Organisation of Economic Cooperation and Development (OECD) have made recommendations for improving healthcare problems in aging societies. Turkey belongs to the WHO and the OECD. This article describes end-of-life healthcare in Turkey, the design of the healthcare system to meet this need, challenges that should be addressed, and solutions that would be appropriate to Turkish culture and resources.


Author(s):  
David C. Currow ◽  
Stein Kaasa

Hospice and palliative care services have developed in very different ways around the world. Most have been built on the momentum of visionary clinicians and funders who have responded to perceived needs from health-care providers, patients, families, and communities rather than in response to well-formed national policies with an adequately funded planning and development phase. This chapter describes the work that is being done at pan-national, national, and sub-national levels to create effective policies that can further the key work of hospice/palliative care, often after a large number of apparently unconnected local services have been well established. The chapter highlights that there are particular challenges in forming public policy on hospice/palliative care, especially the end-of-life component, and notes the importance of ‘patients’ voices’-the voice of the community which helps to inform health policies including end-of-life care. The chapter ends by describing a variety of country-specific and World Health Organization policy documents and legislation.


2015 ◽  
Vol 50 (3) ◽  
pp. 305-312 ◽  
Author(s):  
Tamara Z. Vern-Gross ◽  
Catherine G. Lam ◽  
Zachary Graff ◽  
Sara Singhal ◽  
Deena R. Levine ◽  
...  

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