Reciprocal Dynamics of Dignity in End-of-Life Care: A Multiperspective Systematic Review of Qualitative and Mixed Methods Research

Choo, Ping Ying; Tan-Ho, Geraldine; Dutta, Oindrila; Patinadan, Paul Victor; Ho, Andy Hau Yan

doi:10.1177/1049909119878860

Cited by 29 publications

(53 citation statements)

References 60 publications

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“…23 For example, preserving hope was coded as a subtheme of ‘being meaningful to others’, as respondents saw preserving hope as something that others did to support patients. As input for the themes, we used scientific literature about the patients’ dignity, 1 , 2 , 5 , 8 dignity and culture 12 , 24 and culture and palliative care. 11 …”

Section: Methodsmentioning

confidence: 99%

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A dignified last phase of life for patients with a migration background: A qualitative study

et al. 2020

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Background: Preserving personal dignity is an important part of palliative care. Generally, autonomy, independency and not being a burden to others are emphasised for preserving dignity. Dignity has not been studied yet from the perspective of the growing group of patients with a migration background living in Western countries. Aim: To gain insight into (1) what patients – and their relatives – with a Turkish, Moroccan or Surinamese background, living in the Netherlands, in their last phase of life find important aspects of dignity, and (2) how care professionals can preserve and strengthen the dignity of these patients. Design: Qualitative thematic analysis of semi-structured interviews. Participants: A total of 23 patients and 21 relatives with a Turkish, Moroccan or Surinamese background were interviewed. Results: For respondents dignity encompassed surrender to God’s or Allah’s will and meaningful relationships with others, rather than preserving autonomy. Surrender to God or Allah meant accepting the illness, the situation and performing religious practice. A meaningful relationship meant being assisted or cared for by family members and maintaining a social role. Professionals could preserve dignity by showing respect and attention; guaranteeing physical integrity, hygiene and self-direction; and indirect communication about diagnoses and prognoses. Conclusions: Religion and appropriate involvement of family members are important aspects of dignity in the last phase of life, in addition to autonomy and independency. Care professionals need to take these factors into account in order to provide person-centred care.

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Section: Methodsmentioning

confidence: 99%

“… 1 – 4 Strengthening and preserving personal dignity is therefore a prominent part of palliative care. 4 , 5 Personal dignity refers to the subjective experience of dignity. 6 , 7 Personal dignity includes the value we attach to ourselves and the value we think others attach to us.…”

Section: Introductionmentioning

confidence: 99%

A dignified last phase of life for patients with a migration background: A qualitative study

et al. 2020

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“…Because of the focus on the patient's dignity, the relational interplay between patients' dignity and informal caregivers' dignity is absent in many models in the current literature. 3,5,21 Our study shows the aspects that are important within these relationships, and that these relationships shape the experience of dignity. 1 Our ndings could be speci c for informal caregivers of migrant patients.…”

Section: Discussionmentioning

confidence: 71%

“…3,4 dignity is the subjective experience of dignity, and it can be compromised by physical and mental changes due to illness, and actions of others, such as relatives and healthcare professionals. 3,5 Maintaining dignity is therefore an important aspect of quality of life. But, as the WHO de nition of palliative care mentions, good palliative care not only encompasses improvement in the patient's quality of life, but also in the patient's support system.…”

Section: Introductionmentioning

confidence: 99%

“…Healthcare professionals have an important role in maintaining the patient's dignity and providing family-centred care. 5,7,8 The focus on the support system, often family, might be particularly important for informal caregivers of migrant patients. Informal caregivers of non-western migrant patients in the Netherlands are generally more involved in taking care of chronically ill patients in their last phase of life than are informal caregivers of Dutch patients.…”

Section: Introductionmentioning

confidence: 99%

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Dignity of informal caregivers of migrant patients in the last phase of life. A qualitative study.

Voogd

Willems

Torensma

et al. 2020

Preprint

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Background An important aim of palliative care is to improve the family’s and patient’s quality of life. To ensure quality of life for migrant patients’ families, the objective of this study was to get insight into the dignity of informal caregivers. This could provide insight on family-centered care for migrant patients. Methods 20 semi-structured interviews with informal caregivers with a Turkish, Moroccan or Surinamese migration background living in the Netherlands were analyzed thematically. Results We found the dignity of the patient and the dignity of the informal caregiver were strongly related. Most important for the dignity of the informal caregiver was to ensure good care for and preserve the dignity of the patient. Ensuring good care encompassed advocating for good and dignified care and wishes of the patient. For many caregivers, it also included delivering care to the patient themselves or with other family members, despite having to give up a part of their own lives. Giving care themselves was part of maintaining a good relationship, it could cater to the patient’s preferences or preserve the patient’s dignity, and it could come with valuable aspects such as times for good conversations. The informal caregiver’s dignity and the patient’s dignity were often compromised simultaneously. When informal caregivers felt healthcare professionals were impairing the dignity of the patient, their own dignity suffered. Also, dignified behavior by the patient such as thankfulness influenced the informal caregiver’s dignity positively, undignified behavior of the informal caregiver themselves, such as showing their emotions to significant others could influence it negatively. According to informal caregivers, healthcare professionals can help them preserve their dignity by taking their advice about the patient seriously, informing them about the disease and the patient’s prognosis, and dealing respectfully with value differences at the end of life. Conclusion The dignity of migrant patients’ informal caregivers in the last phase of the patient’s life is entwined with ensuring good care for and dignity of the patient. Healthcare professionals could strengthen the informal caregiver’s dignity by supporting their role.

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Psychological resilience among palliative patients with advanced cancer: A systematic review of definitions and associated factors

Lau

Khoo

et al. 2021

Psycho-Oncology

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Objective The palliative journey can be emotionally stressful for both patients with advanced cancer and their families. Psychological resilience is crucial in aiding with patients' adaptation and post‐traumatic growth. The aim of this systematic review was to critically examine the definitions of psychological resilience and its associated factors in palliative patients with advanced cancer. Methods Four databases were systematically searched from inception to August 2020. Both qualitative and quantitative studies that examined factors associated with psychological resilience in a sample of patients with advanced cancer undergoing palliative care were included. Results A total of 15 studies met the criteria, of which 10 were qualitative and five were quantitative. Nine studies included a definition of psychological resilience, from which five common themes of buffering, adaptation, resources, recovery, and growth were derived. The quantitative studies found association between resilience and hope, independence, social support, fatigue, emotional distress, and coping strategies. The qualitative studies reported additional sources of resilience such as spirituality, social support, prior experience dealing with illness and life adversity, meaning‐making, reconciling with life's finiteness, acceptance of illness, control, determination, positive attitude, dignity, engagement with palliative care and quality of life being supported by palliative care. Conclusions More research is needed for developing an overarching definition of psychological resilience in palliative advanced cancer patients that acknowledges and appreciates the contextual sensitivity of this concept among different cultural groups. Further studies are also needed to examine a holistic range of bio‐psycho‐socio‐spiritual factors associated with psychological resilience among these patients and their families.

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Reciprocal Dynamics of Dignity in End-of-Life Care: A Multiperspective Systematic Review of Qualitative and Mixed Methods Research

Cited by 29 publications

References 60 publications

A dignified last phase of life for patients with a migration background: A qualitative study

A dignified last phase of life for patients with a migration background: A qualitative study

Dignity of informal caregivers of migrant patients in the last phase of life. A qualitative study.

Psychological resilience among palliative patients with advanced cancer: A systematic review of definitions and associated factors

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