Alternative treatment is an effective adjunct to corticosteroid therapy for some patients with refractory neurosarcoidosis. Clinical deterioration may occur despite combined therapy. Choice of alternative therapy should be determined, in part, by its potential adverse effects.
While most cancer patients are involved in the healthcare decision making process during the early phase, familial involvement gains prominence as the disease progresses.
End-of-life care decision making by HCPs appears largely patient centered, although familial determination still wields significant influence with implications for advance care planning.
Background:“Do not resuscitate” (DNR) orders are put in place where cardiopulmonary resuscitation is inappropriate. However, it is unclear who should be involved in discussions and decisions around DNR orders.Aim:The aim was to determine the views of oncology and palliative care doctors and nurses on DNR orders.Materials and Methods:A questionnaire survey was conducted on 146 doctors and nurses in oncology and palliative care working within a tertiary specialist cancer center in Singapore.Results:Perceived care differences as a result of DNR determinations led to 50.7% of respondents reporting concerns that a DNR order would mean that the patient received a substandard level of care. On the matter of DNR discussions, majority thought that patients (78.8%) and the next of kin (78.1%) should be involved though with whom the ultimate decision lay differed. There was also a wide range of views on the most appropriate time to have a DNR discussion.Conclusions:From the viewpoint of oncology and palliative care healthcare professionals, patients should be involved at least in discussing if not in the determination of DNR orders, challenging the norm of familial determination in the Asian context. The varied responses highlight the complexity of decision making on issues relating to the end of life. Thus, it is important to take into account the innumerable bio-psychosocial, practical, and ethical factors that are involved within such deliberations.
BackgroundAdvanced cancer significantly impacts quality of life of patients and families as they cope with symptom burden, treatment decision-making, uncertainty and costs of treatment. In Singapore, information about the experiences of advanced cancer patients and families and the financial cost they incur for end-of-life care is lacking. Understanding of this information is needed to inform practice and policy to ensure continuity and affordability of care at the end of life. The primary objectives of the Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS) cohort study are to describe changes in quality of life and to quantify healthcare utilization and costs of patients with advanced cancer at the end of life. Secondary objectives are to investigate patient and caregiver preferences for diagnostic and prognostic information, preferences for end-of-life care, caregiver burden and perceived quality of care and to explore how these change as illness progresses and finally to measure bereavement adjustment. The purpose of this paper is to present the COMPASS protocol in order to promote scientific transparency.MethodsThis cohort study recruits advanced cancer patients (n = 600) from outpatient medical oncology clinics at two public tertiary healthcare institutions in Singapore. Patients and their primary informal caregiver are surveyed every 3 months until patients’ death; caregivers are followed until 6 months post patient death. Patient medical and billing records are obtained and merged with patient survey data. The treating medical oncologists of participating patients are surveyed to obtain their beliefs regarding care delivery for the patient.DiscussionThe study will allow combination of self-report, medical, and cost data from various sources to present a comprehensive picture of the end-of-life experience of advanced cancer patients in a unique Asian setting. This study is responsive to Singapore’s National Strategy for Palliative Care which aims to identify opportunities to meet the growing need for high quality care for Singapore’s aging population. Results will also be of interest to policy makers and researchers beyond Singapore who are interested to understand and improve the end-of-life experience of cancer patients.Trial registrationNCT02850640 (Prospectively registered on June 9, 2016).
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