scholarly journals Location of end-of-life care of children with cancer: a systematic review of parent experiences

2021 ◽  
Author(s):  
Michelle Noyes ◽  
Anthony Herbert ◽  
Susan Moloney ◽  
Helen Irving ◽  
Natalie Bradford
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Hospital Staff ◽  
Hospital Environment ◽  
Life Care ◽  
Children With Cancer ◽  
Parental Decision Making ◽  
Location Of Death

Objective: To synthesise existing qualitative research exploring the experiences of parents caring for children with cancer during the end-of-life phase, and the factors that influence parental decision making when choosing the location of end-of-life care and death for their child. Results: This review included 15 studies involving 460 parents of 333 children and adolescents who died from progressive cancer. Where reported, the majority (58%) of children died at home or in a hospital (39%), with only a small fraction dying in a hospice. Factors impacting decision-making for location of care included the quality of communication and the quality of care available. Themes related to choosing home for end-of-life care and death included: honouring the child’s wishes, familiarity of home, and parents’ desire to be their child’s primary carer. Preference for location of death in hospital included trust in hospital staff, practical logistics and the safety of the hospital environment.

Doctors’ reports about palliative systemic treatment: A medical record study

2016 ◽  
Vol 31 (3) ◽  
pp. 239-246 ◽  
Author(s):  
Hilde M Buiting ◽  
Mirian Brink ◽  
Marleen N Wijnhoven ◽  
Martine E Lokker ◽  
Lydia GM van der Geest ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Medical Record ◽  
Medical Records ◽  
End Of Life Care ◽  
Systemic Treatment ◽  
Decision Making Process ◽  
Drinking Behaviour ◽  
Life Care

Background: Decisions about palliative systemic treatment are key elements of palliative and end-of-life care. Such decisions must often be made in complex, clinical situations. Aim: To explore the content of medical records of patients with advanced non-small cell lung cancer and pancreatic cancer with specific emphasis on doctors’ notes about decisions on palliative systemic treatment. Design: Medical record review (2009–2012) of 147 cancer patients containing 276 notes about palliative systemic treatment. We described the proportion of notes/medical records containing pre-specified items relevant to palliative systemic treatment. We selected patients using the nationwide Netherlands Cancer Registry. Setting: Hospital based. Results: About 75% of all notes reported doctors’ considerations to start/continue palliative systemic treatment, including information about the prognosis (47%), possible survival gain (22%), patients’ wish for palliative systemic treatment (33%), impact on quality of life (8%), and patient’s age (3%). Comorbidity (82%), smoking status (78%) and drinking behaviour (63%) were more often documented than patients’ performance status (16%). Conversations with the patient/family about palliative systemic treatment were reported in 49% of all notes. Response measurements and dose adaptations were documented in 75% and 71% of patients who received palliative systemic treatment respectively. Conclusion: Medical records provide insight into the decision-making process about palliative systemic treatment. The content and detail of doctors’ notes, however, widely varies especially concerning their palliative systemic treatment considerations. Registries that aim to measure the quality of (end-of-life) care must be aware of this outcome. Future research should further explore how medical records can best assist in evaluating the quality of the decision-making process in the patient’s final stage of life.

Palliative and end-of-life care in elderly subjects with cardiovascular disease

ESC CardioMed ◽  
2018 ◽  
pp. 2940-2944
Author(s):  
Piotr Sobanski
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Ventricular Assist ◽  
Assessment And Treatment ◽  
Life Issues ◽  
End Of Life Issues

Palliative care (PC) is holistic care that encompasses prevention, assessment, and treatment of symptoms, and addresses the psychological, social, and spiritual problems of ill people and their relatives with the goal of improving quality of life and, finally, dying. It is not an alternative but a supplement to curative treatment, making symptom alleviation and quality of life equally important goals for management and care as healing along the whole disease trajectory. The SENSE model describes elements of PC: Symptom management, dEcision-making, Networking, Support, and End-of-life care. People with heart disease, particularly those with advanced heart failure (HF), benefit from PC care. Pain, breathlessness, tiredness, depression, anxiety, and dry mouth are frequent symptoms among people with HF and could be effectively alleviated with PC. Many of these symptoms, almost constantly present in HF patients, are usually not specifically targeted by medical interventions. Preparedness for anticipatory death improves quality of life during dying for patients and their relatives, and improves satisfaction with care. The greatest challenge still lies in recognizing unmet PC needs and involving a PC team appropriately early, not simply in the very last hours of life. A number of specific issues, such as the modification of implantable cardioverter defibrillator activity or withdrawal of ventricular assist device support, can be addressed by preparing advance directives leading to protecting patients from unwished, usually futile, therapies when they become imminently dying and/or incompetent for decision-making. PC also gives support to cardiology teams in difficult communications on end-of-life issues. Modern PC manages or prevents suffering in people with advanced diseases, independent of diagnosis and prognosis and care for their relatives. It can be provided additionally to disease-specific management as a parallel care, or sometimes as the main care pathway in people close to death as end-of-life care. Parallel PC care should be needs driven; end-of-life care can additionally be prognosis driven. In the majority of cardiological patients PC can/should be delivered by the cardio team that has been treating the person to date and who applies the general PC rules (symptom and distress assessment and management). The PC specialist should ensure consultations in case of difficult/resistant problems, and take the lead in treatment only rarely, if needed. PC acknowledges four dimensions influencing a person’s quality of life: physical, psychological/emotional, spiritual, and social. Each of them needs to be addressed effectively which may require the involvement of a multidisciplinary team. A PC team can provide important support to the treatment team in analysing/solving complex management-related ethical issues.

scholarly journals Evaluating satisfaction with the quality and provision of end-of-life care for patients from diverse ethnocultural backgrounds

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Ayah Nayfeh ◽  
Christopher J. Yarnell ◽  
Craig Dale ◽  
Lesley Gotlib Conn ◽  
Brigette Hales ◽  
...  
Keyword(s):  
Quality Of Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Communication Barriers ◽  
Life Care ◽  
Priority Areas ◽  
Location Of Death ◽  
Language Communication ◽  
Care Improvement

Abstract Background Recently immigrated and ethnic minority patients in Ontario, Canada are more likely to receive aggressive life-prolonging treatment at the end of life in comparison to other patients. To explore this finding further, this survey-based observational study aimed to evaluate satisfaction with the quality of end-of-life care for patients from diverse ethnocultural backgrounds. Methods The End-of-Life Satisfaction Survey was used to measure satisfaction with the quality of inpatient end-of-life care from the perspective of next-of-kin of recently deceased patients at Sunnybrook Health Sciences Centre in Toronto, Ontario (between March 2012 to May 2019). The primary outcome was the global rating of satisfaction. Associations with patient ethnicity, patient religion, level of religiosity/spirituality, language/communication barriers, and location of death were assessed using univariable and multivariable modified Poisson regression. Secondary outcomes included differences in satisfaction and rates of dying in intensive care units (ICU) among patient population subgroups, and identification of high priority areas for quality-of-care improvement. Results There were 1,543 respondents. Patient ethnicities included Caucasian (68.2%), Mediterranean (10.5%), East Asian (7.6%), South Asian (3.5%), Southeast Asian (2.1%) and Middle Eastern (2.0%); religious affiliations included Christianity (66.6%), Judaism (12.3%) and Islam (2.1%), among others. Location of death was most commonly in ICU (38.4%), hospital wards (37.0%) or long-term care (20.0%). The mean(SD) rating of satisfaction score was 8.30(2.09) of 10. After adjusting for other covariates, satisfaction with quality of end-of-life care was higher among patients dying in ICU versus other locations (relative risk [RR] 1.51, 95%CI 1.05-2.19, p=0.028), lower among those who experienced language/communication barriers (RR 0.49 95%CI 0.23-1.06, p=0.069), and lower for Muslim patients versus other religious affiliations (RR 0.46, 95%CI 0.21-1.02, p=0.056). Survey items identified as highest priority areas for quality-of-care improvement included communication and information giving; illness management; and healthcare provider characteristics such as emotional support, doctor availability and time spent with patient/family. Conclusion Satisfaction with quality-of-care at the end of life was higher among patients dying in ICU and lower among Muslim patients or when there were communication barriers between families and healthcare providers. These findings highlight the importance of measuring and improving end-of-life care across the ethnocultural spectrum.

scholarly journals Quality of End-of-Life Care Provided to Patients With Different Serious Illnesses

2016 ◽  
Vol 176 (8) ◽  
pp. 1095 ◽  
Author(s):  
Melissa W. Wachterman ◽  
Corey Pilver ◽  
Dawn Smith ◽  
Mary Ersek ◽  
Stuart R. Lipsitz ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care

scholarly journals Conversations About Death and Dying, End-of-Life Care Plans and Preferences Between Aging Parents and Adult Children

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 417-417
Author(s):  
Hyo Jung Lee ◽  
Jacobbina Jin Wen Ng
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Adult Children ◽  
End Of Life Care ◽  
Death And Dying ◽  
Family Members ◽  
Life Care ◽  
Joint Decision ◽  
Aging Parents ◽  
Care Plans

Abstract This study aims to investigate whether attitude and perception on late-life death and dying, end-of-life care plans and preferences could be better understood from current values shared between aging parents and their adult children in the multi-cultural city-bound country, Singapore. We are in the process of interviewing 20 aging parent-adult child dyads. Up to date, six semi-structured interviews were completed and transcribed. We performed Content analysis to analyze the transcripts. Preliminary findings showed that both aging parents and adult children rarely discussed this issue, although parents had their own plans or preferences. The major barriers against open conversations about death and dying of aging parents include: the perception of not-yet time to talk about this issue (without knowing when the right time is) and tendency to have conversations about death in tandem with finances, but not death itself. Although specific end-of-life care plans or arrangements were not thought out thoroughly, aging parents expressed a high level of trust and reliance on close family members’ decisions regarding their end-of-life care. They tended to agree on joint decision-making process within family, even though adult children had no or unmatched ideas about their aging parents’ end-of-life wishes. This did not necessarily align with previous findings in Western countries, underscoring individuals’ control over their own death and dying process. Open conversation within family, family-involved advance care planning, or joint decision-making processes may be warranted to promote quality of life and death in older Singaporeans and well-being of their family members of all ages.

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