Sarah Hales1, Aubrey Chiu2, Amna Husain3, Michal Braun4, Anne Rydall2, Lucia Gagliese5, Camilla Zimmermann6, Gary Rodin7. 1. Psychosocial Oncology and Palliative Care, The Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada; Department of Psychiatry, University of Toronto, Toronto, Ontario, Canada. Electronic address: sarah.hales@uhn.ca. 2. Psychosocial Oncology and Palliative Care, The Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada. 3. Department of Family and Community Medicine, University of Toronto, Toronto, Ontario, Canada; Temmy Latner Centre for Palliative Care, Mount Sinai Hospital, Toronto, Ontario, Canada. 4. School of Psychology, Interdisciplinary Center, Herzliya, Israel. 5. Psychosocial Oncology and Palliative Care, The Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada; School of Kinesiology and Health Science, York University, Toronto, Ontario, Canada. 6. Psychosocial Oncology and Palliative Care, The Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada; Department of Medicine, University of Toronto, Toronto, Ontario, Canada. 7. Psychosocial Oncology and Palliative Care, The Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada; Department of Psychiatry, University of Toronto, Toronto, Ontario, Canada.
Abstract
CONTEXT: Health care is increasingly focused on end-of-life care outcomes, but relatively little attention has been paid to how the dying experience is subjectively evaluated by those involved in the process. OBJECTIVES: To assess the quality of death of patients with cancer and examine its relationship to receipt of specialized palliative care and place of death. METHODS: A total of 402 deaths of cancer patients treated at a university-affiliated hospital and home palliative care program in downtown Toronto, Ontario, Canada were evaluated by bereaved caregivers eight to 10 months after patient death with the Quality of Dying and Death (QODD) questionnaire. Caregivers also reported on bereavement distress, palliative care services received, and place of death. RESULTS: Overall quality of death was rated "good" to "almost perfect" by 39% and "neither good nor bad" by 61% of caregivers. The lowest QODD subscale scores assessed symptom control (rated "terrible" to "poor" by 15% of caregivers) and transcendence over death-related concerns (rated "terrible" to "poor" by 19% of caregivers). Multivariable analyses revealed that late or no specialized palliative care was associated with worse death preparation, and home deaths were associated with better symptom control, death preparation, and overall quality of death. CONCLUSION: The overall quality of death was rated positively for the majority of these cancer patients. Ratings were highest for home deaths perhaps because they are associated with fewer complications and/or a more extensive support network. For a substantial minority, symptom control and death-related distress at the end of life were problematic, highlighting areas for intervention.
CONTEXT: Health care is increasingly focused on end-of-life care outcomes, but relatively little attention has been paid to how the dying experience is subjectively evaluated by those involved in the process. OBJECTIVES: To assess the quality of death of patients with cancer and examine its relationship to receipt of specialized palliative care and place of death. METHODS: A total of 402 deaths of cancerpatients treated at a university-affiliated hospital and home palliative care program in downtown Toronto, Ontario, Canada were evaluated by bereaved caregivers eight to 10 months after patientdeath with the Quality of Dying and Death (QODD) questionnaire. Caregivers also reported on bereavement distress, palliative care services received, and place of death. RESULTS: Overall quality of death was rated "good" to "almost perfect" by 39% and "neither good nor bad" by 61% of caregivers. The lowest QODD subscale scores assessed symptom control (rated "terrible" to "poor" by 15% of caregivers) and transcendence over death-related concerns (rated "terrible" to "poor" by 19% of caregivers). Multivariable analyses revealed that late or no specialized palliative care was associated with worse death preparation, and home deaths were associated with better symptom control, death preparation, and overall quality of death. CONCLUSION: The overall quality of death was rated positively for the majority of these cancerpatients. Ratings were highest for home deaths perhaps because they are associated with fewer complications and/or a more extensive support network. For a substantial minority, symptom control and death-related distress at the end of life were problematic, highlighting areas for intervention.
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