End-of-life care in schizophrenia: a systematic review.

OBJECTIVE: Schizophrenia is a severe and persistent mental illness with profound effects on patients, families, and communities. It causes immense suffering on personal, emotional, and socioeconomic levels. Individuals with schizophrenia have poorer health outcomes and die 10-20 years younger than the general population. Economic costs associated with schizophrenia are substantial and comprise 2.5% of healthcare expenditures worldwide. Despite psychosocioeconomic impacts, individuals with schizophrenia are subject to inequitable care, particularly at end of life. A systematic review was conducted to examine disparities in end-of-life care in schizophrenia and identify factors that can be targeted to enhance end-of-life care in this vulnerable population. DESIGN: A comprehensive search was conducted using the databases Ovid MEDLINE(R), Ovid EMBASE, Ovid PsycINFO, Ovid Cochrane Central Register of Controlled Trials, Ovid Cochrane Database of Systematic Reviews, and Scopus from 2008-2018. Keywords included schizophrenia, palliative, end-of-life, and hospice. Two authors independently reviewed titles and abstracts; disagreements were resolved by consensus. RESULTS: The search identified 123 articles; 33 met criteria: 13 case reports, 12 retrospective studies, 5 literature reviews, and 3 prospective studies. Articles were divided into major themes including healthcare disparities, ethics, and palliative care. Palliative care was the most frequent theme comprising >50% of the articles, and there was considerable thematic overlap with ethics and palliative care. Almost half the articles (45%) were related to schizophrenia and comorbid cancer. CONCLUSIONS: Increased awareness of potential healthcare disparities in this population, creative approaches in multidisciplinary care, and provision of adequate palliative services and resources can enhance end-of-life care in schizophrenia.

Research Involving Participants With Impaired Consent Capacity: An Examination of Methods to Determine Capacity to Consent.

OBJECTIVE: To examine methods of assessing consent capacity in research protocols involving participants with impaired consent capacity, and examine instruments used to evaluate research consent capacity. METHODS: A retrospective review of 330 active research protocols involving participants lacking capacity to consent over a 10-year period (January 1, 2009, through March 1, 2019) was conducted to collect protocol characteristics (medical specialty, level of risk and type of study, consent and assent procedures, and type of vulnerable or protected population). Methods to assess consent capacity are described, and instruments to assess consent capacity are summarized. RESULTS: The specialties most frequently involving participants with impaired consent capacity in research were Neurology (27.3%), Critical Care (16.7%), and Surgery (10%). Type of studies are observational (43.9%), clinical trials (33%), chart review (11.5%), biobank (6.1%), and biomarker (5.5%). Minimal risk (53.3%) outnumbered greater than minimal risk (46.7%) studies. Most obtained written informed consent (77%) and assent (40.9%). The most common method to assess consent capacity was direct assessment by investigators (32.7%). Only 86 (26%) studies used instruments to assess consent capacity. Of the 13 instruments used, the most common was the Evaluation of Decision-Making Capacity for Consent to Act as a Research Subject, and is the only instrument that assesses all four components of decisional capacity: understanding, appreciation, reasoning, and choice. CONCLUSION: Generally, there was lack of uniformity in determining capacity to consent to research participation. Very few studies used instruments to assess consent capacity. Institutional review boards can provide greater guidance for research consent capacity determination.