The Current State Of Palliative Care-Related Research In China And A Study Of The Preferred Place Of Death Among Older Adults

Part Ⅰ A Bibliometric Study of The Academic Publications of Palliative Care in ChinaBackground:As a fundamental part of the Universal Health Coverage,palliative care is hugely demanded but poorly developed in mainland China.The World Health Organization recognizes research as an essential part of the development of palliative care and selects publication as an indicator of regional development.Objective:To describe the development of palliative care-related publications in China for 2010-2021.To find gaps in existing research and inform the future ones.Methods:Web of Science,Scopus,PubMed,CINAHL,Ovid MEDLINE,and CNKI were searched for palliative care-related literature published by Chinese Mainland from 2010/01/01-2021/12/31.The publication year,affiliation,journal,and citations were retrieved.Publication numbers,regional impact factors,and other bibliometric indicators were explored to show the annual trend in publication and regional disparity.Keyword bursts were detected by CiteSpace to find active topics.The literature related to advance care planning and the COVID-19 pandemic were further retrieved as samples for the evaluation of the research pattern.Results:A total of 4287 articles were published in Chinese Mainland from 2010 to 2021.The annual publication number and impact factor rose rapidly after 2016 but dropped again in 2020.The regional disparity in the publication is huge and closely related to economics.Beijing and Shanghai account for 23.2%of the total publication.There is no specialized journal of palliative care in Chinese Mainland.In 2020,the most important journals reduced palliative care-related publications.Palliative care in cancer patients was the most common topic(35.2%of the publication),while palliative care for non-cancer patients only accounted for 4.9%.Pain and symptom control accounted for 17.9%of the publication,while spirituality,psychology,and grief accounted for 9.7%.In the past 12 years,50 original studies on advance care planning were published in high-quality journals.Among them,only 14 studies involved patients with severe illnesses.There is no qualitative research on patients with severe illnesses or older people.Mainland China has published 14 articles on COVID-19-related palliative care topics,both in English and Chinese.At the same time,the United States has published 423 articles on the same topic on Web of Science,the United Kingdom 145,and Singapore 19.Conclusion:During the past 12 years,there is a considerable increase in the number,quality,and impact of palliative care-related literature in Mainland China.However,the regional disparity is prominent,and the research is preliminary.People’s ability to quickly organize palliative care-related discussions and research programs are still lacking.While recognizing the importance of whole-person care,and directly targeting the population in need of palliative care,researchers should apply both quantitative and qualitative methods in their studies.Part Ⅱ The Preferred Place of death of Retirement CommunityDwelling Older Adults and Its Associated FactorsBackground:Being able to die at one’s preferred place is an important indicator of the quality of death.Regarding the place of death preferences,results varied widely across participants’ locations,populations,and studies.Studies on the preferred place of death among retirement community-dwelling older adults are lackingObjective:To explore the preferred place of end-of-life care and associated factors of the retirement community-dwelling elderly people.Methods:From the cohort established by Peking Union Medical College Hospital and a retirement community in Beijing,older residents who completed follow-up assessments in 2019 or 2020 were included through convenience sampling.During the follow-up,information on gender,age,and education level was collected.The Charlson Comorbidity Index was used to assess the disease burden.The FRAIL scale was used to assess frailty and the Lawton Physical Self-Maintenance Scale for function ability.Questionnaires were used to understand the needs of the participants for hospital services and the preferred place of death.Univariate analysis and logistic regression were used to explore factors associated with hospital preference.Results:Of the 174 participants included in the analysis,70 were men(40.2%);the mean age was 85.2 ± 4.7.146 of them had a college degree or above(83.9%).152 had a CCI score from 0-2(87.3%).119 had normal ADL(68.4%).125 were frail or pre-frail(71.9%).Among them,26(14.9%)preferred to spend the end of their life at home,99(56.9%)preferred to die in a hospital,and the remaining 49(28.2%)said the place didn’t matter.Age,gender,education level,disease burden,physical function,and the need for medical care were not associated with whether the participants preferred hospital(P>0.05).Conclusions:Retirement community-dwelling older people may prefer to die in a hospital at the end of life.Their preferences are highly heterogeneous.The preferred place cannot be explained by demographic,disease,or functional indicators,and has nothing to do with their current medical needs.Further studies are needed to clarify the forming process of a preferred place of death and associated factors.Part Ⅲ The Process of Forming a Preferred Place of Death:A Qualitative StudyBackground:Patients’ answers to the query of preferred place of death are always vague and fluid.Factors related to the preferred place of death are not clear.Quantitative studies are not robust enough to investigate the deep information related to the taboo topic.Qualitative studies are needed to explain the dynamic forming process of the preferred place of death.Objective:To explore the process of forming a preferred place of death,as well as the needs and assumptions behind it.The results can inform clinical communication,decision-making,and palliative care policymaking.Methods:Informed by the constructivist grounded theory,18 older participants were recruited from the Geriatrics Ward of Peking Union Medical College Hospital and a retirement community in Beijing,through critical case sampling,purposive sampling,maximum variation sampling,and theoretical sampling.After forming a trusting relationship,face-to-face Semi-structured interviews were conducted and recorded,as well as participant observation.The record was transcribed verbatim and anonymized.With the help of MAXQDA 2020,constructivist grounded theory was used to analyze the observation and interview data.Micro-analysis,different levels of coding,and constant comparison were used to form a theory.Results:The core concept of the process is "constant adjustment".It included 5 intertwined processes:asking for the need in death and dying,getting knowledge of places,anticipating the death process,evaluating accessible resources,and weighing choices.A sense of uncertainty is present in the process all the time,and forms a cycle with the medicalization of death and affects decision-making.With these processes,participants gradually formed a clearer thought of the preferred place of death or concluded that it doesn’t matter.Conclusion:The preference for a place of death is not a fixed,single answer formed instantaneously,but is formed dynamically in the process of constant adjustment.A preference is associated with personal need,knowledge of the places,the anticipation of the death process,resources,and personal value.It’s also impacted by the sense of uncertainty and medicalization of death.Medical staff can help patients to think about the preferred place of death by initiating discussion,sharing knowledge,and discussing improper assumptions.Future policies in China’s urban areas should provide palliative care services in different locations.Palliative care units should be set up in hospitals.