“All of a sudden, a lot less still makes it worthwhile to be alive:” Palliative care patients’ views on life

2018 ◽  
Vol 17 (2) ◽  
pp. 214-220 ◽  
Author(s):  
Vanessa Romotzky ◽  
Julia Strupp ◽  
Alexander Hayn ◽  
Jens Ulrich Rüffer ◽  
Judith Grümmer ◽  
...  
Keyword(s):  
Palliative Care ◽  
Terminal Illness ◽  
Qualitative Content Analysis ◽  
Death And Dying ◽  
Human Beings ◽  
Type Result ◽  
Video Recordings ◽  
The Moment ◽  
And Coping ◽  
Age Range

AbstractObjectiveWe aimed to elucidate the views on life as narrated by patients in palliative care (PC) to find out what patients deem to be essential in their life, whether something has changed concerning their view of life in light of the disease, and whether interviewees would like to give others something to take with them.MethodData were collected from narrative audio and video interviews with 18 inpatients in a specialized PC unit. Interviews were recorded and transcribed verbatim and analyzed using qualitative content analysis applying MAXQDA software. CDs and DVDs with recorded interviews were provided to patients.ResultEighteen interviews were analyzed: 11 audio and 7 video recordings. The age range was 41–80 years. Patients reported on changes in their views on life. Despite it being a complex and painful process, patients still gave examples of benefits experienced during their illness trajectory. Patients identified resources and coping strategies such as meaningful contacts with close others and mindfulness. Shifts have occurred in terms of taking more time for themselves, enjoying the moment, being more calm, and spending more time with family and friends. What patients wanted to pass on to others was to pay attention to the needs of both the self and the others, shape your life individually, confront yourself early with issues of death and dying, and care for your fellow human beings. Patients and relatives valued the opportunity to keep their interview as a CD/DVD.Significance of resultsResults support the idea that many people facing terminal illness continue to focus on living and remain within their biographies and the contexts of their lives, even if their functional status declines. Patients and relatives appreciated that interviews were provided as kind of a legacy. Yet, more robust research is needed to decide whether such interviews yield any therapeutic effect.

scholarly journals Palliative Care in Turkish Medical History

2021 ◽  
Author(s):  
Alparslan Koç
Keyword(s):  
Palliative Care ◽  
Social Structure ◽  
Medical History ◽  
Chronic Diseases ◽  
Social Life ◽  
Modern Medicine ◽  
Human Beings ◽  
Quality Life ◽  
Medicine Today ◽  
The Moment

From the moment that human beings begin perceiving the value of life, they have also started to strive for the continuation of life. It would not be wrong to divide Turkish societies into three parts as sociological history. Turkish social life before Islam, the differences in the social structure with Islam, and Europe's social structure with the westernization influx with the end of the 19th century can be examined. Health system and patient care was also greatly affected by these processes. Health care, which was carried on with Shamanism and Herbalism in the old Turkish states and continued with bimarhanes and darüssifas, and health professionals have been mobilized to serve the society with the opportunities of modern medicine today. Acute and chronic diseases that occur with the continuation of life make it difficult to lead a quality life. This process can sometimes be painful. Palliative care is also useful in chronic diseases whose mortality has decreased with successful treatment methods recently applied, but which impairs the quality of life due to the disease. Thus, this process, which puts the patient's relatives psychologically, socially, and financially difficult, and the patient, can be managed more easily. Although it started with reducing and caring for cancer patients' pain, palliative care has now become a necessity in all areas of clinical practice. Our aim in this review is to examine the development process of the concept of palliative care in Turkish medical history.

scholarly journals THE RECEPTION OF C.G. JUNG IN US DEATH AND DYING STUDIES

2018 ◽  
pp. 83-110
Author(s):  
Jelena Martinovic
Keyword(s):  
Palliative Care ◽  
Terminal Illness ◽  
William James ◽  
Death And Dying ◽  
The United States ◽  
Humanistic Psychology ◽  
Death Experience ◽  
The Dead ◽  
Book Of The Dead ◽  
Near Death Experience

C.G. Jung’s work has had a noticeable impact on conceptions about death and the dying experience, as well as on the therapeutic work methods that deal with anxiety, depression or terminal illnesses. This article analyses the reception of C.G. Jung’s work in the United States during the time period 1960-80. It examines ways in which Jung’s concepts were discussed and applied by psy practitioners who worked in fields related to death and dying studies (thanatology, palliative care, suicide and near- death studies). Following an examination of Jung’s ‘Americanisation’ in the 1950s and the reception of his commentaries on death, discussed in relation to the reception of The Tibetan Book of the Dead, I will analyse four examples: 1) a psychiatric interpretation of Jung’s account of a near- death experience and its comparison with William James’ mystical states of consciousness; 2) psychedelic therapies conducted with LSD, in which ‘symbolic dying processes’ are provoked; 3) suicide studies done on suicide survivors; 4) parapsychological investigation of near-death experience. The examples show that Jung’s work was pivotal, allowing psychologists to link it to concepts and approaches to terminal illness and positive or transpersonal psychology. Within the period under consideration, Jung’s reception has to be read and understood in relation to the more general reception of James’ work, in particular his psychology of religion. KEYWORDS William James, near-death experience, thanatology, palliative care, Tibetan Book of the Dead, LSD therapy, suicide studies, humanistic psychology

scholarly journals Hospice Employees’ Perceptions of Their Work Environment: A Focus Group Perspective

2020 ◽  
Vol 17 (17) ◽  
pp. 6147 ◽  
Author(s):  
Rebecca H. Lehto ◽  
Carrie Heeter ◽  
Jeffrey Forman ◽  
Tait Shanafelt ◽  
Arif Kamal ◽  
...  
Keyword(s):  
Mental Health ◽  
Terminal Illness ◽  
Hospice Care ◽  
Death And Dying ◽  
Structured Interview ◽  
Organizational Level ◽  
Physical And Mental Health ◽  
Care Workers ◽  
Hospice Workers ◽  
And Coping

Burnout in healthcare professionals can lead to adverse effects on physical and mental health, lower quality of care, and workforce shortages as employees leave the profession. Hospice professionals are thought to be at particularly high risk for burnout. The purpose of the study was to evaluate workplace perceptions of interdisciplinary hospice care workers who provide care to patients at end of life. Six focus groups and one semi-structured interview were conducted with mixed group of social workers, managers, nurses, hospice aides, chaplains, support staff, and a physician (n = 19). Findings from the groups depicted both rewards and challenges of hospice caregiving. Benefits included intrinsic satisfaction from the work, receiving positive patient and family feedback, and teamwork. Challenges reflected issues with workload, technology issues, administrative demands, travel-related problems, communication and interruptions, difficulties with taking time off from work and maintaining work-life integration, and coping with witnessing grief/loss. Hospice workers glean satisfaction from making meaningful differences in the lives of patients with terminal illness and their family members. It is an expected part of the job that certain patients and situations are particularly distressing; team support and targeted grief support is available for those times. Participants indicated that workload and administrative demands rather than dealing with death and dying were the biggest contributors to burnout. Participants reported episodic symptoms of burnout followed by deliberate steps to alleviate these symptoms. Notably, for all except one of the participants, burnout was cyclical. Symptoms would begin, they would take steps to deal with it (e.g., taking a mental health day), and they recovered. At an organizational level, a multipronged approach that includes both personal and occupational strategies is needed to support professional caregivers and help mitigate the stressors associated with hospice work.

scholarly journals The Desire to Die in Palliative Care: A sequential mixed methods study to develop a semi-structured clinical guideline

2020 ◽  
Author(s):  
Kerstin Kremeike ◽  
Gerrit Frerich ◽  
Vanessa Romotzky ◽  
Kathleen Bostroem ◽  
Thomas Dojan ◽  
...  
Keyword(s):  
Palliative Care ◽  
Mixed Methods ◽  
Clinical Guideline ◽  
Qualitative Content Analysis ◽  
Death And Dying ◽  
Structured Interviews ◽  
Self Reflection ◽  
Sequential Mixed Methods ◽  
The One ◽  
Desire To Die

Abstract Objective: Although desire to die (DD) of varying intensity and permanence is frequent in patients with advanced cancer and those receiving palliative care, uncertainty exists concerning appropriate therapeutic responses to it. To support health professionals in dealing with patients´ potential DD, a training program and a semi-structured clinical interview guideline was developed. This study aimed for a revision of and consensus building on the clinical guideline to support proactively addressing DD and routine exploration of death and dying distress. Methods: Within a sequential mixed methods design, we invited 16 palliative patients to participate in semi-structured interviews and 377 (inter-)national experts to attend a two-round Delphi process. Interviews were analyzed using qualitative content analysis and an agreement consensus for the Delphi was determined according to predefined criteria. Results : 11 (69%) patients from different settings participated in face-to-face interviews. As key issues for conversations on DD they pointed out the relationship between professionals and patients, the setting and support from external experts, if required. A set of 149 (40%) experts (132/89% from Germany, 17/11% from 9 other countries) evaluated ten domains of the clinical guideline. There was immediate consensus on nine domains concerning conversation design, suggestions for (self-)reflection, and further recommended action. The one domain in which consensus was not achieved until the second round was “proactively addressing DD”. Conclusions : We have provided the first semi-structured clinical guideline to identify and address DD and to respond therapeutically – based on evidence, patients’ views and consensus among (inter-)national professional experts. Trial registration: German Clinical Trials Register (No. DRKS00012988).

Acceptance and valued living as critical appraisal and coping strengths for caregivers dealing with terminal illness and bereavement

2014 ◽  
Vol 13 (2) ◽  
pp. 359-368 ◽  
Author(s):  
Esther L Davis ◽  
Frank P. Deane ◽  
Geoffrey C.B. Lyons
Keyword(s):  
Psychological Distress ◽  
Individual Differences ◽  
Terminal Illness ◽  
Process Model ◽  
Death And Dying ◽  
Psychological Consequences ◽  
Acceptance And Commitment ◽  
Valued Living ◽  
And Coping ◽  
Support Research

AbstractObjective:Informal caregivers of palliative care patients play an essential role in the coordination of care for patients during their final phases of life. However, undertaking a caregiving role can have enduring psychological consequences for caregivers and interfere with functioning. Studies have investigated a variety of factors associated with individual differences in caregiver psychosocial outcomes, but little is known about their relative impact, and there is a need for guiding models to support research in this area.Method:A review of the literature was conducted on factors influencing the psychological distress and grief of caregivers. Drawing from acceptance and commitment therapy (ACT) and Stroebe and colleagues' integrative risk factor framework, we developed a process model to describe individual differences in caregiver psychological distress and grief.Results:The model presents caregiver psychological distress and grief as functions of death attitudes and communication about death and dying, mediated by acceptance and valued living from an ACT perspective. An outline of the empirical and theoretical underpinnings for each component in the model is provided.Significant of results:The presented model is an inherently strengths-based model that is concordant with acceptance- and values- (ACT) based interventions to facilitate coping in caregivers.

scholarly journals The Desire to Die in Palliative Care: A sequential mixed methods study to develop a semi-structured clinical aproach

2020 ◽  
Author(s):  
Kerstin Kremeike ◽  
Gerrit Frerich ◽  
Vanessa Romotzky ◽  
Kathleen Bostroem ◽  
Thomas Dojan ◽  
...  
Keyword(s):  
Palliative Care ◽  
Mixed Methods ◽  
Qualitative Content Analysis ◽  
Death And Dying ◽  
Clinical Approach ◽  
Research Database ◽  
Services Research ◽  
Sequential Mixed Methods ◽  
Desire To Die ◽  
Registration Date

Abstract Background: Although desire to die of varying intensity and permanence is frequent in patients receiving palliative care, uncertainty exists concerning appropriate therapeutic responses to it. To support health professionals in dealing with patients´ potential desire to die, a training program and a semi-structured clinical interview approach was developed. This study aimed for a revision of and consensus building on the clinical approach to support proactively addressing desire to die and routine exploration of death and dying distress. Methods: Within a sequential mixed methods design, we invited 16 palliative patients to participate in semi-structured interviews and 377 (inter-)national experts to attend a two-round Delphi process. Interviews were analyzed using qualitative content analysis and an agreement consensus for the Delphi was determined according to predefined criteria. Results: 11 (69%) patients from different settings participated in face-to-face interviews. As key issues for conversations on desire to die they pointed out the relationship between professionals and patients, the setting and support from external experts, if required. A set of 149 (40%) experts (132/89% from Germany, 17/11% from 9 other countries) evaluated ten domains of the semi-structured clinical approach. There was immediate consensus on nine domains concerning conversation design, suggestions for (self-)reflection, and further recommended action. The one domain in which consensus was not achieved until the second round was “proactively addressing desire to die”. Conclusions: We have provided the first semi-structured clinical approach to identify and address desire to die and to respond therapeutically – based on evidence, patients’ views and consensus among professional experts. Trial registration: The study is registered in the German Clinical Trials Register (DRKS00012988; registration date: 27.9.2017) and in the Health Services Research Database (VfD_DEDIPOM_17_003889; registration date: 14.9.2017).

scholarly journals The Desire to Die in Palliative Care: A sequential mixed methods study to develop a semi-structured clinical aproach

2020 ◽  
Author(s):  
Kerstin Kremeike ◽  
Gerrit Frerich ◽  
Vanessa Romotzky ◽  
Kathleen Bostroem ◽  
Thomas Dojan ◽  
...  
Keyword(s):  
Palliative Care ◽  
Mixed Methods ◽  
Qualitative Content Analysis ◽  
Death And Dying ◽  
Clinical Approach ◽  
Research Database ◽  
Services Research ◽  
Sequential Mixed Methods ◽  
Desire To Die ◽  
Registration Date

Abstract Background: Although desire to die of varying intensity and permanence is frequent in patients receiving palliative care, uncertainty exists concerning appropriate therapeutic responses to it. To support health professionals in dealing with patients´ potential desire to die, a training program and a semi-structured clinical interview approach was developed. This study aimed for a revision of and consensus building on the clinical approach to support proactively addressing desire to die and routine exploration of death and dying distress. Methods: Within a sequential mixed methods design, we invited 16 palliative patients to participate in semi-structured interviews and 377 (inter-)national experts to attend a two-round Delphi process. Interviews were analyzed using qualitative content analysis and an agreement consensus for the Delphi was determined according to predefined criteria. Results : 11 (69%) patients from different settings participated in face-to-face interviews. As key issues for conversations on desire to die they pointed out the relationship between professionals and patients, the setting and support from external experts, if required. A set of 149 (40%) experts (132/89% from Germany, 17/11% from 9 other countries) evaluated ten domains of the semi-structured clinical approach. There was immediate consensus on nine domains concerning conversation design, suggestions for (self-)reflection, and further recommended action. The one domain in which consensus was not achieved until the second round was “proactively addressing desire to die”. Conclusions : We have provided the first semi-structured clinical approach to identify and address desire to die and to respond therapeutically – based on evidence, patients’ views and consensus among professional experts. Trial registration: The study is registered in the German Clinical Trials Register (DRKS00012988; registration date: 27.9.2017) and in the Health Services Research Database (VfD_DEDIPOM_17_003889; registration date: 14.9.2017).

scholarly journals The National Policy Framework and Strategy on Palliative Care 2017‒2022: What’s in it for Terminally Ill Inmates in South Africa?

Obiter ◽  
2021 ◽  
Vol 41 (4) ◽  
pp. 671-684
Author(s):  
Chesné Albertus
Keyword(s):  
South Africa ◽  
Palliative Care ◽  
Terminal Illness ◽  
National Policy ◽  
Terminally Ill ◽  
Policy Framework ◽  
Correctional Settings ◽  
The Moment ◽  
The Right ◽  
The Impact

In South Africa many people suffer from serious, incurable health conditions that may render them incapacitated and/or terminally ill. Such persons may inevitably require holistic care such as palliative care. The adoption in 2017 of the National Policy Framework and Strategy on Palliative Care 2017‒2022 (NPFSPC) in line with the Health Assembly Resolution 67.19 “Strengthening of Palliative Care as a Component of Comprehensive Care Throughout the Life Course” thus marked a significant milestone for advocates of palliative care, as well as for persons affected by terminal illness. Despite this positive step towards the fulfilment of the right to access healthcare, terminally ill persons who are inmates in South African correctional centres are not sufficiently protected by the NPFSPC. While the policy may be lauded for its detailed provisions aimed at affording appropriate care to free persons, it makes but a few fleeting references to inmates who are terminally ill – a very vulnerable group, given the often appalling conditions in correctional centres, the limited resources generally available to inmates and the stigma attached to them. It is therefore submitted that palliative care should be available to all inmates diagnosed with a terminal illness from the moment they are diagnosed. This article also analyses the stated purpose of the NPFSPC in relation to correctional settings, as well as the impact of disease on correctional centres, and the importance of fostering partnerships.

A Figurational Approach: Views of Communication and Awareness of Death and Dying in Ireland

2009 ◽  
Vol 17 (2) ◽  
pp. 41-55
Author(s):  
Una Macconville ◽  
Regina McQuillan
Keyword(s):  
Palliative Care ◽  
Terminal Illness ◽  
Death And Dying ◽  
Terminally Ill ◽  
The Us ◽  
The 1960S ◽  
The Uk ◽  
Radio Talk

Open awareness and communication in death and dying have become important aspects in caring for people who are terminally ill. This change began in the 1960s and has been driven by social and ideological factors, especially in highly individualistic societies such as the US and the UK. While this is the preferred interaction within palliative care, open awareness and communication about death and dying can be resisted in some societies where families seek to protect their relative from the truth of a terminal illness. This article considers some attitudes to open awareness and communication in Ireland from recent research and a popular radio talk programme. This suggests that while there is openness about issues of mortality in Ireland, there can be resistance when terminal illness becomes a reality within a family. Elias's figurational approach is utilised to understand these differing responses.

scholarly journals Social Construction of Aging

2016 ◽  
Vol 3 (4) ◽  
Author(s):  
Dr. Rashmi Saxena
Keyword(s):  
Social Construction ◽  
Old Age ◽  
Well Being ◽  
Small Sample ◽  
Human Beings ◽  
Elderly Parents ◽  
Daily Care ◽  
Important Concern ◽  
The Moment ◽  
Age Range

In life, we must take the good with the bad, and how we view these life events determines our well being and ability to adjust. Aging is not optional. We are all, in fact, aging from the moment we are born. The biggest issue regarding aging and getting old is how we look at it. Social constructivisms uncover the ways in which individuals participate in the creation of their perceived social reality. It involves looking at the ways old age are perceived, created, institutionalized, and made into traditions by human beings.  Individuals construct their own life course through the choices and actions they take within the opportunities and constraints of history and social circumstances. This paper examines social construction of old age and aging in general and self-aging in particular among a small sample of 300 male and female respondents in the age range of 25-85 years. Main themes that emerged in the context constructions of general aging were as follows: good aging – ‘all responsibilities being over’; worst part of growing old – ‘empty nest’; females spend less time than males with elderly parents but expect a better relationship with them and are perceived to be the best support to elderly; best type of support for male elderly – ‘emotional’, for female elderly – ‘physical’; best support that old parents can extend is in ‘caring for children’; amount of advice that young adults are willing to accept from elderly – ‘only a bit’; for old respondents caring for elderly – a ‘government’s responsibility. When people were asked to construe their own old age they reported that the most predominant feeling in old age would be ‘loneliness’; most important concern –‘health’; expectations about living in old age – ‘with son and their families’; possibilities of receiving day to day care from grown up children – ‘great’. Data analysis revealed several interesting findings by way of anxiety about aging, ageist attitudes and some utopian expectations. Most importantly, it indicated that even though people try to maintain a distance from elderly people, are unable to engage with them and/or care for their elderly parents they are sure of receiving, in their own old age, much better support, emotional closeness and daily care from their children.

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