The quality of dying and death: a systematic review of measures

Authors:

Hales, S., Zimmermann, C., and Rodin, G.

Abstract:

To determine whether modern medicine is facilitating 'good' deaths, appropriate measures of the quality of dying and death must be developed and utilized. The purpose of this paper is to identify quality of dying and death measurement tools and to determine their quality. MEDLINE (1950-2008), Healthstar (1966-2008), and CINAHL (1982-2008) were searched using keyword terms 'quality of dying/death' and 'good/bad death'. Papers that described a quality of dying and death measure or that aimed to measure the quality of dying and death were selected for review. The evaluation criteria included a description of the measure development (validated or ad hoc), the provision of a definition of quality of dying and death, an empirical basis for the measure, the incorporation of multiple domains and the subjective nature of the quality of dying and death construct, and responsiveness to change. Eighteen measures met the selection criteria. Six were published with some description of the development process and 12 were developed ad hoc. Less than half were based on an explicit definition of quality of dying and death and even fewer relied on a conceptual model that incorporated multidimensionality and subjective determination. The specified duration of the dying and death phase ranged from the last months to hours of life. Of the six published measures reviewed, the Quality of Dying and Death questionnaire (QODD) is the most widely studied and best validated. Strategies to measure the quality of dying and death are becoming increasingly rigorous. Further research is required to understand the factors influencing the ratings of the quality of dying and death.

DOI:

10.1177/0269216309351783

URL:

https://www.ncbi.nlm.nih.gov/pubmed/20085963

Journal:

Palliat Med

issn:

1477-030X (Electronic)

Publication year:

2010

pages:

127-44

Symptom status:

Emotional state
Physical state

General health perceptions / HRQoL:

Health-related quality of life

Overall quality of life:

Overall quality of life

Age:

Adults (18-65)
Children (0-18)
Seniors (65+)

Disease:

Certain conditions originating in the perinatal period and related symptoms
Certain infections and parasitic diseases and related symptoms
Congenital malformations, deformations and chromosomal abnormalities and related symptoms
Diseases of and symptoms related to the blood and blood-forming organs and certain disorders involving the immune mechanism
Diseases of and symptoms related to the circulatory system
Diseases of and symptoms related to the digestive system
Diseases of and symptoms related to the ear and mastoid process
Diseases of and symptoms related to the eye and adnexa
Diseases of and symptoms related to the genitourinary system
Diseases of and symptoms related to the musculoskeletal system and connective tissue
Diseases of and symptoms related to the nervous system
Diseases of and symptoms related to the respiratory system
Diseases of and symptoms related to the skin and subcutaneous tissue
Endocrine, nutritional and metabolic diseases and related symptoms
External causes of morbidity and mortality
Injury, poisoning and certain other consequences of external causes
Mental and behavioural disorders and related symptoms
Neoplasms and related symptoms
Pregnancy, childbirth and puerperium and related symptom
Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified

PRO / non-PRO:

Non-patient Reported Outcome
Patient Reported Outcome

Type of measurement instrument:

1 - Questionnaires
6 - Clinical rating scales

Instrument:

CGI - Client Generated Index
DDQOD - Dialysis Discontinuation Quality of Dying
GDI - Good Death Inventory
GDS - Good Death Scale
MQOL - McGill Quality of Life Questionnaire [alias: McGill QoL] (also: MQOL-CSF - MQOL-Cardiff Short form)
QODD - Quality of Dying and Death Questionnaire
QoD-LTC - Quality of Dying in Long-Term Care
Single-use instruments
The quality of death