Prevalence Of Advance Care Planning Research Articles

Palliative Care Service Utilization and Advance Care Planning for Adult Glioblastoma Patients: A Systematic Review.

Simple SummaryGlioblastoma is the most common primary brain malignancy diagnosed in adults, and, despite standard of care treatment, it carries a devastating prognosis with median overall survival of 16–21 months. Advance care planning and palliative care services utilization are important for this patient population due to their cancer and neurocognitive symptoms. We present a systematic review on prevalence of advance care planning, end-of-life services utilization, and experiences among adults with glioblastoma. The findings from our review serve as a foundation for future additional works, particularly prospective studies, that may address gaps in palliative care resource utilization and disparities in advance care planning for adult glioblastoma patients.Glioblastoma (GBM) has a median overall survival of 16–21 months. As patients with GBM suffer concurrently from terminal cancer and a disease with progressive neurocognitive decline, advance care planning (ACP) and palliative care (PC) are critical. We conducted a systematic review exploring published literature on the prevalence of ACP, end-of-life (EOL) services utilization (including PC services), and experiences among adults with GBM. We searched from database inception until 20 December 2020. Preferred reporting items for systematic reviews guidelines were followed. Included studies were assessed for quality using the Newcastle-Ottawa Scale. The 16 articles were all nonrandomized studies conducted in six countries with all but two published in 2014 or later. ACP documentation varied from 4–55%, PC referral was pursued in 39–40% of cases, and hospice referrals were made for 66–76% of patients. Hospitalizations frequently occurred at the EOL with 20–56% of patients spending over 25% of their overall survival time hospitalized. Many GBM patients do not pursue ACP or have access to PC. There is a dearth of focused and high-quality studies on ACP, PC, and hospice use among adults with GBM. Prospective studies that address these and additional aspects related to EOL care, such as healthcare costs and inpatient supportive care needs, are needed.

Palliative care service utilization and advance care planning issues for adult glioblastoma patients: A systematic review.

2036 Background: Glioblastoma (GBM) is a devastating disease with a median survival under 2 years and a 10-year survival rate of 0.71%. As patients with GBM suffer simultaneously from both a terminal cancer and a neurodegenerative disease, proactive provision of advance care planning (ACP) and palliative care (PC) seem appropriate. We conducted a systematic review exploring the published literature on the prevalence of ACP, healthcare services utilization at the end of life (EOL, including PC services), and location of death among adults with GBM, and the experiences of their caregivers. Methods: We systematically searched PubMed, Embase, Scopus, and Cochrane Library from database inception until 12/20/2020, using search terms including ‘glioblastoma’, ‘end of life’, ‘advance care planning’, and ‘advance directive’. Preferred reporting items for systematic reviews and meta-analyses (PRISMA) guidelines were followed. Inclusion criteria were quantitative and qualitative studies written in English of adults with GBM and their caregivers, with at least 20 subjects. Included studies were assessed for quality using the Newcastle-Ottawa Scale. Results: We screened 344 article abstracts and 39 full text articles to yield a final cohort of 16 articles that fit inclusion criteria. These studies reported the experiences of 10,706 GBM patients and 123 caregivers. All were nonrandomized studies conducted in six countries with all but two published in 2014 or later. Across studies, ACP documentation varied from 4-55%, PC referral was pursued in 39-40% of cases, and hospice referrals were made for 66-76% of adult GBM patients. Hospitalizations frequently occurred at the EOL, 20-56% of patients spent over 25% of their overall survival time hospitalized, and 39-64 % of deaths occurred in the home setting. Caregivers commonly reported restrictions on their ability to work (60%), financial barriers to care (29%), and feeling unprepared (29%). Conclusions: Despite having both a terminal disease and neurocognitive decline, a majority of adults with GBM do not pursue ACP or have access to PC. There is a dearth of focused and high-quality studies on ACP, PC, and hospice use among adults with GBM. Prospective studies that address these and additional aspects related to end-of-life care in this population, such as healthcare costs and inpatient supportive care needs, are needed.

Delivering More, Better and Earlier Goals of Care Conversations to Seriously Ill Oncology Patients in the Clinical Setting (FR481C)

population as it relates to the inpatient and outpatient setting. Brainstorm how providers across multiple disciplines can work together to provide effective ACP in the HIV-infected population. Systematic Review Background. Since the advent of antiretroviral therapy (ART), HIV has transitioned from a rapidly fatal illness to a chronic disease with multi-morbidity, and providers are faced with an emerging population with unique advance care planning (ACP) needs. Aims. To provide a narrative review of existing studies on ACP in adult HIV-infected patients in the post-ART era. Session descriptions. Original studies describing ACP for adult HIV-infected patients post-ART (1996-present) were identified through searches of PUBMED, EMBASE and PsychINFO, excluding nonEnglish and legal/social work articles. Nine studies met the selection criteria. They were conducted between 1996 and 2013, with study size ranging from 47 to 2864 patients. Most studies consisted of young, white, male patients with less than college education in the outpatient setting, and they had poorly defined definitions of ACP. The prevalence of ACP was variable (36-54% end-of-life communication, 847% advance directive). Lack of ACP was most commonly associated with less severity of illness, followed by non-white race, drug use, younger age, female sex, low education, low income, and social isolation. Providers reported limited time/energy and inadequate preparation/training as barriers to ACP. Conclusion. Existing literature on ACP in the postART era is limited. The prevalence of ACP in HIVinfected patients is low in vulnerable subgroups (non-white race, drug users, those of lower socioeconomic status, socially-isolated patients), but higher with increased age, severity of illness, or multimorbidity. Providers also report logistics and inadequate preparation as barriers to ACP. More research is needed to effectively increase ACP among HIV-infected patients.

Advance care planning for older people in Australia presenting to the emergency department from the community or residential aged care facilities.

The purpose of this retrospective, cross-sectional study was to determine the prevalence of advance care planning (ACP) among older people presenting to an Emergency Department (ED) from the community or a residential aged care facility. The study sample comprised 300 older people (aged 65+ years) presenting to three Victorian EDs in 2011. A total of 150 patients transferred from residential aged care to ED were randomly selected and then matched to 150 people who lived in the community and attended the ED by age, gender, reason for ED attendance and triage category on arrival. Overall prevalence of ACP was 13.3% (n = 40/300); over one-quarter (26.6%, n = 40/150) of those presenting to the ED from residential aged care had a documented Advance Care Plan, compared to none (0%, n = 0/150) of the people from the community. There were no significant differences in the median ED length of stay, number of investigations and interventions undertaken in ED, time seen by a doctor or rate of hospital admission for those with an Advance Care Plan compared to those without. Those with a comorbidity of cerebrovascular disease or dementia and those assessed with impaired brain function were more likely to have a documented Advance Care Plan on arrival at ED. Length of hospital stay was shorter for those with an Advance Care Plan [median (IQR) = 3 days (2-6) vs. 6 days (2-10), P = 0.027] and readmission lower (0% vs. 13.7%). In conclusion, older people from the community transferred to ED were unlikely to have a documented Advance Care Plan. Those from residential aged care who were cognitively impaired more frequently had an Advance Care Plan. In the ED, decisions of care did not appear to be influenced by the presence or absence of Advance Care Plans, but length of hospital admission was shorter for those with an Advance Care Plan.

Advance Care Planning in Nursing Homes and Assisted Living Communities

To determine the prevalence and characteristics of advance care planning (ACP) among persons dying in long-term care (LTC) facilities, and to examine the relationship between respondent, facility, decedent, and family characteristics and ACP. After-death interviews of family members of decedents and facility liaisons where decedents received care. Stratified sample of 164 residential care/assisted living facilities and nursing homes in Florida, Maryland, New Jersey, and North Carolina. Family members and facility liaisons who gave 446 and 1014 reports, respectively, on 1015 decedent residents. Reports of death/dying discussions, known treatment preferences, and reports and records of signed living wills (LW), health care powers of attorney (HCPOA), do-not-resuscitate orders, and do-not-hospitalize orders. Family respondents reported a higher prevalence, compared with facility reports, of HCPOAs (92% versus 49%) and LWs (84% versus 43%). In family reports, non-white race and no private insurance were significantly associated with lower prevalence of LWs and HCPOAs; additionally, residing in nursing homes (versus assisted living facilities) and in North Carolina were associated with lower prevalence of reported LWs. In facility reports, non-white race, unexpected death, and residing in North Carolina or Maryland were significantly associated with lower prevalence of LWs, whereas high Medicaid case mix, intact cognitive status, and high family involvement were associated with lower prevalence of HCPOAs. Concordance of family and facility reporting of HCPOAs was significantly greater in facilities with fewer than 120 beds. The prevalence of ACP in LTC is much higher than previously described, and there is marked variation in characteristics associated with ACP, despite moderately high concordance, when reported by the facility or family caregivers.

Increasing the Prevalence of Advance Care Planning

The question of developing an effective intervention for advance care planning rests on several assumptions. On a general level, the assumption is that advance care planning is a good thing, that we should want more people to perform it. On a more specific level, the question assumes that an advance care plan, whether documented in a written advance directive or made in less formal ways, will accurately reflect an individual's wishes, will be updated periodically as needed, will be activated or put into play,, at the appropriate time, and will be interpreted and followed in the manner in which the individual intended it to be used. In other words, one must assume that advance care planning actually makes a difference and improves the decisionmaking process for patients who have lost decisional capacity. In this paper, I also assume that advance care planning remains an optional endeavor, rather than something required, for example, as a condition of obtaining health insurance. Having explicitly stated these assumptions, I do believe that there are interventions that can increase the use of advance care planning. There are a number of published studies examining such interventions that can provide insight into how best to accomplish this task. As of this writing, ten of these studies have been published,[1] as was one study that recommended executing an advance directive as part of a comprehensive social and safety evaluation for older patients.[2] In addition, there is one published study of the early effects of the Patient Self-determination Act on advance care planning.[3] These studies have been conducted in a variety of settings including hospital-based clinics, geriatric assessment clinics, nursing homes and other senior housing sites, and home care services for the frail elderly. All but two of the studies (High and Emanuel et al.) used subjects drawn from a single institution. Most studies have been limited to either elderly patients (aged sixty-five or older) or very seriously ill patients. The interventions have ranged from written materials provided through the mail or in person, to discussions held on a single occasion, to repeated conversations with health care providers over weeks to months. Although subjects may have been followed for some length of time, as in the study by Schneiderman et al., even the most intensive interventions did not continue for longer than four months. Almost all of these studies used completion of a written advance directive document as the primary outcome measure. Several studies also touched on advance care planning to the extent that subjects were asked whether they had discussed their wishes with someone else, such as family members and physicians. Only three studies - High, Rubin et al., and Emanuel et al. - employed more than 120 subjects in the intervention group. Given the range of settings, subjects, and interventions, it is not surprising that these studies found a wide range of positive responses, with anywhere from percent to 81 percent of subjects having written advance directives postintervention.[4] The lowest response rates (less than 20%) were obtained in studies involving unselected subjects drawn from outpatient clinics and people over the age of sixty-five recently dip charged from a hospital.[5] The highest response rates (greater than 60% were seen when interventions targeted very seriously ill patients or frail elderly people.[6] Although not found uniformly across all studies, several characteristics appear to be associated with the type of person who executes an advance directive in response to an intervention (or who has a directive in the first place in other, descriptive studies). Individuals more likely to have advance directives or to plan care in advance are older, white, well-educated, and tend generally to plan for the future, as evidenced by a greater proportion of estate wills than the general public. In a few studies, women were more likely than men to draw up advance directives. …