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Dignity and Quality of Life - Synthesis

Introduction

Dignity and QoL are complex concepts and each will mean different things to different people. They include physical, social, psychological and spiritual well-being, and feelings of value and self-worth. Quality of life (QoL) in palliative care includes the concepts of compassionate care and of dying with dignity. [1,2]
 

Quality Statement

Overall, the quality of the evidence is acceptable to high. It is recognised that dignity and quality of life (QoL) are complex and subjective concepts, difficult to define and to accurately measure. [1,2] Most of the included studies relate to general adult populations [1-15] with two relating specifically to older people [16, 17].

Five studies related to dignity, dignity therapy and dignity-conserving care in palliative care. [1,3,4,9,13] Three systematic review on dignity therapy were included [13-15] one of which discusses older populations as a distinct subset. [13]
 

Evidence Synthesis

Dignity and Quality of Life (QoL)

Quality of life is implicit in the World Health Organization (2018) definition of palliative care. [10,18] QoL includes the physical, social psychological and spiritual well-being of a person. Health-related QoL (HRQoL) relates to those aspects of well-being that are related to or affected by the presence of disease or treatment. The broader term, QoL, takes into account other, non-medical concepts, such as family, support system and friends. [5,10,12]

Kumar reports the rate of QoL articles in 12 Medline-indexed palliative care journals (2006-2011) as 1.95% including very few randomised-control trials (RCTs) and systematic reviews. [12] Multidisciplinary palliative care journals demonstrated a higher inclusion of QoL articles when compared to medical and nursing palliative care journals. These observations are based on a restrictive search strategy which limited the inclusion of “quality of life (QoL)” to the title only.

Both McDonald [2] and van Groenestijn et al. [10] acknowledge that in research pertaining to QoL, there exists a diversity of questionnaires and a lack of a standardised assessment tools. McDonald’s work acknowledges the difficulty in determining which aspect of QoL changes in response to a care intervention, and the degree to which this improvement is related to pain. [2]

Care planning and clear, respectful and empathetic communication with patients, their family and carers can contribute positively to quality of life of palliative care patients. [3,4,9,11] Quality of life (QoL) of palliative care patients can be enhanced by the correct and timely assessment and management of physical symptoms (particularly pain), psychological symptoms (particularly anxiety and depression) and spiritual needs. [2,11,17] Pharmacological and nonpharmacological management of pain and anxiety are important particularly in the last days of life. [8]

Dying patients, families, and health professionals consider dying with dignity to be important but this continues to be an ambiguous concept. Dignity-supporting or dignity-conserving care comprises a broad range of care activities which include the relief of physical and psychological distress, help in maintaining independence, and the provision of a comfortable and homely environment. Clear and honest yet compassionate and empathetic communication, and considering the person as a ‘whole’ are considered as essential aspects of this care. [3,4,9]

Dignity at the end of life is explored in a review by Rodríguez-Prat et al. [1] This review discusses the complex interrelationship of dignity, autonomy and personal identity. The authors note that the concepts of intrinsic and extrinsic dignity are important components of this interrelationship. The awareness of an internal or intrinsic sense of dignity can assist a person to maintain a positive view of himself/herself in the face of illness or disability. External dignity or a sense of self based on autonomy and control of one’s circumstances can be an undermining force. For a person with a strong desire for autonomy, wanting control of the dying process may lead to a poor quality of life at end-of-life and a desire to hasten death.

Kane et al. [5] identify a small quantity of evidence (moderate to poor quality) to support that patient-centred care interventions can improve QoL for chronic heart failure patients. Comparison across the interventions was difficult and three other studies in this systematic review showed little or no improvement in QoL.

Dignity Therapy (DT)

Dignity therapy, developed in 2002, aims to conserve a dying person’s sense of dignity by addressing sources of psychosocial and existential distress. [13-15] Dignity Therapy (DT) provides the opportunity for a person to reflect on and share the moments that have shaped his or her life and to create a legacy document. [13-15] A Dignity Therapist uses 10 core questions to guide an interview which is audio-recorded. The recorded conversation is used as the basis for the creation of a written narrative which is then reviewed by the person. [13-15] The final legacy document is then presented to the person who may share it with family and friends. [13-15]

DT has been shown to be well accepted. [13-15] Patients often report a high satisfaction and benefits for themselves and their families, including increased sense of meaning and purpose. [13-15] Small studies of dignity therapy for older people in residential aged care (not necessarily receiving palliative care) suggest that dignity therapy can raise levels of meaning of life, quality of life and spiritual well-being. However, an effect on lowering depression or distress has not been clearly demonstrated. [13-15] Residents report that they appreciate the insights that come from the attention given to them and the opportunity to reflect. [13-15] Even for those who pass a cognitive screening test, cognitive impairment – minor and major memory lapses – can impair the therapy. [13-15] Family members of residents report that DT as a trigger for discussing feelings and beginning discussions and learning about elements of the older person’s life. [13-15] Some family members have expressed concern about the possibility that the therapy may be stressful for the older person or that the legacy document may create strain in family relationships. [13,14] Health professionals note that reading the legacy document of a resident/client in their care can have a positive effect on their satisfaction at work and how they assess and interact with that person. [13] Cultural norm and sensitivities may mean that DT is not accepted or appropriate. [13,14] The feasibility of DT for older people and older people at end-of-life is currently unclear. [14]

Association between palliative care and patient and caregiver outcomes

A systematic review by Kavalieratos et al. [17] includes 43 randomised-controlled trials (RCTs). These RCTs involved almost 13,000 older patients (mean age 67 years) and were conducted in ambulatory and home-based settings but did not include residential aged care facilities (RACFs). A narrative synthesis was conducted on all RCTs while QoL as an outcome was included in a meta-analysis. In this meta-analysis, palliative care interventions were associated with improvements in patient QoL and symptom burden. The analysis, when restricted to trials of low risk of bias, showed that palliative care was associated with improved QoL at the 1- to 3-month follow-up, and at the 4- to 6-month follow-up.

Evaluating and responding to the needs and preferences of older patients receiving palliative care in residential aged care facilities (RACF)

In the assessment of residents requiring palliative care in aged care facilities (RACF), Hermans et al. [16] reviewed five comprehensive geriatric assessments (CGAs). The McMaster Quality of Life Scale (MQLS) was shown to have the strongest validity and reliability.

The interRAI Palliative Care (interRAI PC) was evaluated as the most comprehensive (covers all domains of the Guidelines for A Palliative Approach to Residential Aged Care (APRAC, 2006)) and demonstrated high inter-rater reliability yet required further psychometric testing for validity in the residential aged care setting. It assists individual care plans to be evaluated and adjusted and can improve the transfer of information between care-givers and health care settings.

Other tools such as Missoula-VITAS Quality of Life Index-Revised (MVQOLI-R) and the Modified Quality of Life Concerns in the End of Life Questionnaire (mQOLC-E) and Palliative Care Outcome Scale (POS) were shown to be valid. These tools were designed to assess the overall quality of life of palliative care patients and are especially helpful when palliative care is aimed at optimising the quality of life of the dying person. The mQOLC-E, the least comprehensive CGA, was shown to be a valid and reliable questionnaire to assess quality-of-life concerns of older residents in a RACF in the palliative phase. The MVQOLI-R can be used as a clinical tool to encourage communication about spiritual and psychosocial issues. The POS is a suitable instrument to assess not only respondents that are cognitively able to participate but also persons with moderate or severe dementia.

The role of companion animals in well-being of palliative care patients

The role of companion animals in the well-being of palliative care patients is discussed in one literature review by MacDonald and Barrett. [6] Two of only four primary studies conducted by Engelman and Kumasaka et al. suggested that companion animals may be linked to a positive impact (mood, symptom burden) for palliative care patients yet caution should be applied in interpreting these results as the sample size was very small (n=20). Although these do not challenge what could be described as a commonly-held openness to or acceptance of the benefits of a human-animal bond, these studies added very little support due to poor methodology. This review does include a potentially useful clinical consideration in that a companion animal for palliative care patients may also become a source of distress or worry due to separation from the companion animal and uncertainty of continuity of care for the animal.
 

Evidence Gaps

  • Future studies may determine the most valid and reliable QoL questionnaire or assessment tool to assist the depth of understanding of QoL.
  • Only one systematic review considers dignity therapy for older adults in palliative care. More studies will help us understand the feasibility of dignity therapy for older adults and how it can be culturally responsive.
  • There is a need for research to use more standardised measures of patient-reported outcomes to evaluate the most effective components of palliative care. Attention could also be turned to the carers and families of older people receiving palliative care as very little is known of how best to support them.
  • We know little about how others influence the wellbeing and self-perception of a person at the end of their life.
  • A person’s desire for control of the dying process may erode their quality of life. Better understanding of intrinsic and extrinsic dignity may improve quality of life for older Australians at end-of-life and for the people who care for them.
  • Future research could provide greater emphasis to the psychometric properties and effectiveness of comprehensive geriatric assessments (CGAs).
  • Other general CGAs (not specialised in palliative care) could be investigated to determine how these assessment tools could enhance the early detection of the need for palliative care and signal the need for palliative care CGAs to be used.
  • There is a scarcity of research and substantial gaps in the evidence base on the effects of companion animals in a palliative care setting.

Page updated 10 January 2018
 
  • References

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