Background
Research in the end-of-life context has explored the sense of dignity experienced by patients with advanced disease, examining the factors associated with it. Whereas certain perspectives regard dignity as an intrinsic quality, independent of external factors, in the clinical setting it is generally equated with the person’s sense of autonomy and control, and it appears to be related to patients’ quality of life. This study aims to explore the relationship between perceived dignity, autonomy and sense of control in patients at the end of life.

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Patient Perspectives of Dignity, Autonomy and Control at the End of Life: Systematic Review and Meta-Ethnography.

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Health Sciences Literature Review Made Easy The Matrix Method

Objectives Patients with advanced disease sometimes express a wish to hasten death (WTHD) In 2012, we published a systematic review and meta-ethnography of qualitative studies examining the experience and meaning of this phenomenon Since then, new studies eligible for inclusion have been reported, including in Europe, a region not previously featured, and specifically in countries with different legal frameworks for euthanasia and assisted suicide The aim of the present study was to update our previous review by including new research and to conduct a new analysis of available data on this topic Setting Eligible studies originated from Australia, Canada, China, Germany, The Netherlands, Switzerland, Thailand and USA Participants Studies of patients with life-threatening conditions that had expressed the WTHD Design The search strategy combined subject terms with free-text searching of PubMed MEDLINE, Web of Science, CINAHL and PsycInfo The qualitative synthesis followed the methodology described by Noblit and Hare, using the ‘adding to and revising the original’ model for updating a meta-ethnography, proposed by France et al  Quality assessment was done using the Critical Appraisal Skills Programme checklist Results 14 studies involving 255 participants with life-threatening illnesses were identified Five themes emerged from the analysis: suffering (overarching theme), reasons for and meanings and functions of the WTHD and the experience of a timeline towards dying and death In the context of advanced disease, the WTHD emerges as a reaction to physical, psychological, social and existential suffering, all of which impacts on the patient’s sense of self, of dignity and meaning in life Conclusions The WTHD can hold different meanings for each individual—serving functions other than to communicate a genuine wish to die Understanding the reasons for, and meanings and functions of, the WTHD is crucial for drawing up and implementing care plans to meet the needs of individual patients

https://bmjopen.bmj.com/content/bmjopen/7/9/e016659.full.pdf

Understanding patients' experiences of the wish to hasten death: an updated and expanded systematic review and meta-ethnography.

Background:A core concept behind patient-centred approaches is the need to treat people with, and preserve, dignity in care settings. People receiving palliative care are one group who may have particularly sensitive needs in terms of their condition, symptoms and life expectancy. Dignity is more likely to be violated in hospital settings. Given the high percentage of people with palliative care needs who are admitted to hospital during their last year of life, the provision of dignity enhancing and preserving care in that setting is of vital importance.Aim:To examine international evidence relating to dignity and person-centred care for people with palliative care needs in the acute hospital setting.Design:A systematic literature review was conducted, incorporating data extraction, analysis and quality appraisal of included papers.Data sources:MEDLINE, CINAHL, PsycINFO, ASSIA, EMBASE, Cochrane Database and Web of Science. Inclusion dates: 1 January 2000–1 April 2014. Eligibility criteria: Adult palliativ...

Dignity and patient-centred care for people with palliative care needs in the acute hospital setting: A systematic review

Relationships among nursing student palliative care knowledge, experience, self-awareness, and performance: An end-of-life simulation study.

Background:Dying with dignity is regarded as a goal of quality end-of-life care. However, the meaning of dying with dignity is ambiguous, and no comprehensive synthesis of the existing literature has been published.Aim:To synthesize the meaning of dying with dignity and to identify common aspects of dignity in end-of-life care.Design:This is an integrative review article. Methodological strategies specific to the integrative review method proposed by Whittemore and Knafl were followed to conduct data analysis. The matrix method was used to summarize characteristics of included articles.Data sources:Five electronic databases were searched in October 2012, with no date restriction: PubMed, CINAHL, PsycINFO, Academic Search Premier, and Social Sciences Abstracts. Theoretical reports, and both qualitative and quantitative empirical reports, focused on dignity in end-of-life care were included.Results:Themes of dying with dignity are as follows: a human right, autonomy and independence, relieved symptom distre...

An integrative review of dignity in end-of-life care:

Background:Effective patient–family communication can reduce patients’ psychosocial distress and relieve family members’ current suffering and their subsequent grief. However, terminally ill patients and their family members often experience great difficulty in communicating their true feelings, concerns, and needs to each other.Aim:To develop a novel means of facilitating meaningful conversations for palliative patients and family members, coined Dignity Talk, explore anticipated benefits and challenges of using Dignity Talk, and solicit suggestions for protocol improvement.Design:A convergent parallel mixed-methods design. Dignity Talk, a self-administered question list, was designed to prompt end-of-life conversations, adapted from the Dignity Therapy question framework. Participants were surveyed to evaluate the Dignity Talk question framework. Data were analyzed using qualitative and quantitative methods.Setting/participants:A total of 20 palliative patients, 20 family members, and 34 healthcare prov...

https://journals.sagepub.com/doi/pdf/10.1177/0269216317734696

Development and evaluation of the Dignity Talk question framework for palliative patients and their families: A mixed-methods study:

Aim: This paper reports a concept analysis of palliative care in the United States. 
Background: There has been a significant development of palliative care in the United States. The early years of 21st century have been characterized by a proliferation of diverse models of palliative care. Methods: A review of literature was conducted to explore the development of palliative care in the United States. Retrieved articles were published in English between years 2004 and 2011. Reference lists from relevant publications were reviewed. Rodgers’s evolutionary concept analysis strategy was used to guide this paper. The matrix method was used to analyze the identified articles. 
Results: The definition of palliative care has evolved in the United States in recent years. Six attributes were identified: (1) medical specialty, (2) holistic care, (3) patient- and family-centered care, (4) interdisciplinary team work, (5) effective communication, and (6) an integrated approach. The consequences of palliative care for patients, families, and medical institutions were from three aspects: (1) quality of life, (2) treatment and care, and (3) finances. The adapted palliative care model shows that palliative care should be integrated into illness management from the beginning of diagnosis and can be delivered concurrently with curative treatment through the whole trajectory of illness. 
Conclusions: Both the definition and application of palliative care have evolved over the last decade. The ultimate success of developing palliative care as a medical specialty will rest upon the integration of the changing concept of palliative care into everyday practice.

An Evolutionary Concept Analysis of Palliative Care

Confinement to an in-patient hospital ward impairs patients’ sense of social support and connectedness. Providing the means, through communication technology, for patients to maintain contact with friends and family can potentially improve well-being at the end of life by minimizing social isolation and facilitating social connection. This study aimed to explore the feasibility of introducing internet-based communication and information technologies for in-patients and their families and to describe their experience in using this technology. A cross-sectional survey design was used to describe patient and family member experiences in using internet-based communication technology and health care provider views of using such technology in palliative care. Participants included 13 palliative in-patients, 38 family members, and 14 health care providers. An iPad or a laptop computer with password-protected internet access was loaned to each patient and family member for about two weeks or they used their own electronic devices for the duration of the patient’s stay. Quantitative and qualitative data were collected from patients, families, and health care providers to discern how patients and families used the technology, its ease of use and its impact. Descriptive statistics and paired sample t-tests were used to analyze quantitative data; qualitative data were analyzed using constant comparative techniques. Palliative patients and family members used the technology to keep in touch with family and friends, entertain themselves, look up information, or accomplish tasks. Most participants found the technology easy to use and reported that it helped them feel better overall, connected to others and calm. The availability of competent, respectful, and caring technical support personnel was highly valued by patients and families. Health care providers identified that computer technology helped patients and families keep others informed about the patient’s condition, enabled sharing of important decisions and facilitated access to the outside world. This study confirmed the feasibility of offering internet-based communication and information technologies on palliative care in-patient units. Patients and families need to be provided appropriate technical support to ensure that the technology is used optimally to help them accomplish their goals.

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Qiaohong Guo

Papers

An integrative review of dignity in end-of-life care:

Development and evaluation of the Dignity Talk question framework for palliative patients and their families: A mixed-methods study:

An Evolutionary Concept Analysis of Palliative Care

Keep in Touch (KIT): feasibility of using internet-based communication and information technology in palliative care

Dignity at the end of life in traditional Chinese culture: Perspectives of advanced cancer patients and family members.