The Quality of Dying and Death in Cancer and Its Relationship to Palliative Care and Place of Death

PURPOSE A culturally appropriate, patient-centered measure of the quality of dying and death is needed to advance palliative care in Africa. We therefore evaluated the Quality of Dying and Death Questionnaire (QODD) in a Kenyan hospice sample and compared item ratings with those from a Canadian advanced-cancer sample. METHODS Caregivers of deceased patients from three Kenyan hospices completed the QODD. Their QODD item ratings were compared with those from 602 caregivers of deceased patients with advanced cancer in Ontario, Canada, and were correlated with overall quality of dying and death ratings. RESULTS Compared with the Ontario sample, outcomes in the Kenyan sample (N = 127; mean age, 48.21 years; standard deviation, 13.57 years) were worse on 14 QODD concerns and on overall quality of dying and death ( P values ≤ .001) but better on five concerns, including interpersonal and religious/spiritual concerns ( P values ≤ .005). Overall quality of dying was associated with better patient experiences with Symptoms and Personal Care, interpersonal, and religious/spiritual concerns ( P values < .01). Preparation for Death, Treatment Preferences, and Moment of Death items showed the most omitted ratings. CONCLUSION The quality of dying and death in Kenya is worse than in a setting with greater PC access, except in interpersonal and religious/spiritual domains. Cultural differences in perceptions of a good death and the acceptability of death-related discussions may affect ratings on the QODD. This measure requires revision and validation for use in African settings, but evidence from such patient-centered assessment tools can advance palliative care in this region.

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Factors Affecting the Improvement of Quality of Dying of Terminally Ill Patients with Cancer through Palliative Care: A Ten-Year Experience

Journal of Palliative Medicine ◽

10.1089/jpm.2012.0033 ◽

2012 ◽

Vol 15 (8) ◽

pp. 854-862 ◽

Cited By ~ 23

Author(s):

Shao-Yi Cheng ◽

Sydney Dy ◽

Wen-Yu Hu ◽

Ching-Yu Chen ◽

Tai-Yuan Chiu

Keyword(s):

Palliative Care ◽

Terminally Ill ◽

Factors Affecting ◽

Patients With Cancer ◽

Quality Of Dying ◽

Terminally Ill Patients

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Using caregivers-as-proxies to retrospectively assess and measure quality of dying of palliative care clients

American Journal of Hospice and Palliative Medicine® ◽

10.1177/104990910201900311 ◽

2002 ◽

Vol 19 (3) ◽

pp. 193-199 ◽

Cited By ~ 10

Author(s):

Marie Bridge ◽

D. I. Roughton ◽

Susan Lewis ◽

Janine Barelds ◽

Sava Brenton ◽

...

Keyword(s):

Palliative Care ◽

Quality Of Dying

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Validation of the Spanish Version of the Quality of Dying and Death Questionnaire (QODD-ESP) in a Home-Based Cancer Palliative Care Program and Development of the QODD-ESP-12

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2017.02.005 ◽

2017 ◽

Vol 53 (6) ◽

pp. 1042-1049.e3 ◽

Cited By ~ 9

Author(s):

Pedro E. Pérez-Cruz ◽

Oslando Padilla Pérez ◽

Pilar Bonati ◽

Oliva Thomsen Parisi ◽

Laura Tupper Satt ◽

...

Keyword(s):

Palliative Care ◽

Care Program ◽

Spanish Version ◽

Palliative Care Program ◽

Quality Of Dying ◽

Home Based

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Quality of Living and Dying: Pediatric Palliative Care and End-of-Life Decisions in the Netherlands

Cambridge Quarterly of Healthcare Ethics ◽

10.1017/s0963180117000767 ◽

2018 ◽

Vol 27 (3) ◽

pp. 376-384 ◽

Cited By ~ 2

Author(s):

MARIJE BROUWER ◽

ELS MAECKELBERGHE ◽

WILLEMIEN DE WEERD ◽

EDUARD VERHAGEN

Keyword(s):

Palliative Care ◽

The Netherlands ◽

End Of Life ◽

Pediatric Palliative Care ◽

End Of Life Decisions ◽

Quality Of Dying ◽

Quality Of Living ◽

Life Decisions ◽

The Relationship

Abstract:In 2002, The Netherlands continued its leadership in developing rules and jurisdiction regarding euthanasia and end-of-life decisions by implementing the Euthanasia Act, which allows euthanasia for patients 12 years of age and older. Subsequently, in 2005, the regulation on active ending of life for newborns was issued. However, more and more physicians and parents have stated that the age gap between these two regulations—children between 1 and 12 years old—is undesirable. These children should have the same right to end their suffering as adults and newborn infants. An extended debate on pediatric euthanasia ensued, and currently the debate is ongoing as to whether legislation should be altered in order to allow pediatric euthanasia. An emerging major question regards the active ending of life in the context of palliative care: How does a request for active ending of life relate to the care that is given to children in the palliative phase? Until now, the distinction between palliative care and end-of-life decisions continues to remain unclear, making any discussion about their mutual in- and exclusiveness hazardous at best. In this report, therefore, we aim to provide insight into the relationship between pediatric palliative care and end-of-life decisions, as understood in the Netherlands. We do so by first providing an overview of the (legal) rules and regulations regarding euthanasia and active ending of life, followed by an analysis of the relationship between these two, using the Dutch National Guidelines for Palliative Care for Children. The results of this analysis revealed two major and related features of palliative care and end-of-life decisions for children: (1) palliative care and end-of-life decisions are part of the same process, one that focuses both on quality of living and quality of dying, and (2) although physicians are seen as ultimately responsible for making end-of-life decisions, the involvement of parents and children in this decision is of the utmost importance and should be regarded as such.

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Quality of dying and death in patients with interstitial lung disease compared with lung cancer: an observational study

Thorax ◽

10.1136/thoraxjnl-2020-215917 ◽

2020 ◽

pp. thoraxjnl-2020-215917

Author(s):

Takafumi Koyauchi ◽

Yuzo Suzuki ◽

Kazuki Sato ◽

Hironao Hozumi ◽

Masato Karayama ◽

...

Keyword(s):

Lung Cancer ◽

Decision Making ◽

Palliative Care ◽

Interstitial Lung Disease ◽

Lung Disease ◽

End Of Life ◽

Symptom Relief ◽

Mail Survey ◽

Quality Of Dying

BackgroundThere is limited knowledge regarding the quality of dying and death (QODD) and end-of-life interventions in patients with interstitial lung disease (ILD). Hence, differences in QODD and end-of-life interventions between patients with ILD and those with lung cancer (LC) remain poorly understood.MethodsThe primary aim of this study was to explore the differences in QODD and end-of-life interventions among patients dying with ILD versus those dying with LC. We performed a mail survey to quantify the QODD of a bereaved family’s perspective using the Good Death Inventory (GDI) score. Moreover, we examined the end-of-life interventions by medical chart review.ResultsOf 361 consecutive patients analysed for end-of-life interventions, 167 patients whose bereaved families completed questionnaires were analysed for QODD. Patients with ILD had lower GDI scores for QODD than those with LC (p=0.04), particularly in domains related to ‘physical and psychological distress relief’ and ‘prognosis awareness and participation in decision making’ (p=0.02, respectively). In end-of-life interventions, patients with ILD were less likely to receive specialised palliative care services (8.5% vs 54.3%; p<0.001) and opioids (58.2% vs 73.4%; p=0.003). Additionally, lower frequencies of participation of patients with ILD in end-of-life discussion were also observed (40.8% vs 62.4%; p=0.007).ConclusionPatients with ILD had lower QODD and poorer access to palliative care and decision making than those with LC. Additional efforts to improve QODD in patients with ILD, particularly in symptom relief and decision-making processes, are urgently warranted.

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Quality of Dying in Hospital General Wards: A Cross-Sectional Study About the End of Life Care

10.21203/rs.3.rs-344953/v1 ◽

2021 ◽

Author(s):

Filippo Binda ◽

Marco Clari ◽

Gabriella Nicolò ◽

Simone Gambazza ◽

Barbara Sappa ◽

...

Keyword(s):

Palliative Care ◽

Multiple Correspondence Analysis ◽

Cross Sectional Study ◽

Primary Diagnosis ◽

University Teaching ◽

Nursing Interventions ◽

Sectional Study ◽

Cross Sectional ◽

Quality Of Dying

Abstract BACKGROUND In the last decade, access to national palliative care programs have improved, however a large proportion of patients continued to die in hospital, particularly within internal medicine wards. OBJECTIVES To describe how adult patients die in the medical and surgical wards of a large tertiary-level university teaching hospital in the north of Italy, comparing the care and treatments between patients whose death was rated as highly, moderately or not expected by nurses. METHODS Single-centre cross-sectional study. Data on nursing interventions and diagnostic procedure in proximity of death were collected after interviewing the nurse and the physician responsible for the patient. Relationship between qualitative variables involving nursing procedures was summarized by means of multiple correspondence analysis (MCA). RESULTS Death was highly expected by nurses in 108 out of 187 patients included, whose primary diagnosis was respiratory (33.7%). Symptoms control was inadequate for the most severely ill patients: the most prevalent were asthenia (88.3%), mild or severe pain (69.0%), urinary incontinence (66.3%) and respiratory fatigue (64.8%). Physicians rated more frequently than nurses the quality of dying as good or very good, respectively 78.6% and 57.8%. The best quality of dying seems associated to the number of nursing interventions (mostly related to ensure comfort and to prevent pressure ulcers), female sex and low Norton scoring, as suggested by MCA. CONCLUSION Staff in medical and surgical wards still deal inadequately with the needs of dying people. Presence of hospital-based specialist palliative care could lead to improvements in the patients’ quality of life

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An Observational Study to Explore the Feasibility of Assessing Bereaved Relatives’ Experiences Before and After a Quality Improvement Project to Improve Care of Dying Medical Inpatients

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909115625280 ◽

2016 ◽

Vol 34 (3) ◽

pp. 263-268 ◽

Cited By ~ 2

Author(s):

Katherine Clark ◽

Abby Willis ◽

Naomi Byfieldt

Keyword(s):

Symptom Control ◽

Place Of Death ◽

Care Bundle ◽

Improvement Project ◽

Quality Of Dying ◽

Care Processes ◽

Before And After ◽

Medical Inpatients ◽

Bereaved Family

Although hospitals are the most likely place of death, the quality of care received by dying inpatients remains variable. This is concerning for both the dying person and their relatives, with poorer bereavement outcomes likely for those who perceived their family member suffered unduly. There is a real need to consider how this situation can be improved. This work was conducted with the aim of exploring the feasibility of including bereaved relatives’ experiences as part of a larger project exploring the use of a care bundle to improve care of the dying inpatients. Fifty relatives of inpatients who had died previously in hospital were contacted by letter with a request for interview before the implementation of a care bundle for the dying, with a care bundle being a collection of care processes that are implemented together. After this project had been in place for 6 months, a further 50 families were contacted who had died on the bundle. Ten families responded initially to the first request and 10 the second, with the interviews based on the Quality of Dying and Death (QODD) tool and a final open-ended question. Although all families who agree to be interviewed completed the session, with regard to the QODD, some families indicated that they would rather talk than provide numeric scores. No major differences in the prescores and postscores were noted. When invited to share their experiences, without prompting, families spoke of consistent concerns that included communication, place of death, and symptom control. This work confirms that it is highly feasible to incorporate assessments of bereaved family members’ opinions as part of the wider assessment of research into end-of-life care.

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