“You are making the decision for yourself. You are making the choice of how you want your life to be lived and ended, whereas if you don’t do something about that, then somebody else is going to make that decision. Someone you might not even know.”Patient
“Advanced Care Planning is discussing the patient’s goals, desires. In the context of surgery, it’s eliciting what people’s overarching health care goals are. And then having a granular discussion of what can be achieved with the proposed intervention. And then aligning those two.”Clinician
"You know, no matter how old you are, you should have something so that people that are in your life know what’s going on"Patient
“I want to make sure patients understand that advanced care planning isn’t just about 'Do not resuscitate' or 'Full code', but also 'What is most important to you? What are your goals and values?'"Clinician
Identifying Barriers, Facilitators and Outcomes of Advance Care Planning Conversations with Medicare Patients
NIH # 5R01NR017034-04
Although the use of palliative and hospice care for terminally ill Medicare patients is growing, large numbers of Americans die following intensive, non-curative, burdensome treatments. Available evidence suggests that advance care planning (ACP) discussions are associated with less aggressive end-of-life (EOL) care, greater concordance between the care patients prefer and the care they receive, and perhaps improved bereavement outcomes for caregivers. However, national data on the uptake and impact of ACP are lacking.
As a result of a new policy from the Centers for Medicare & Medicaid Services (CMS), effective January 1, 2016, clinicians may now bill for having ACP discussions with their patients. This provides an unprecedented opportunity to study the use and impact of these discussions on a national population basis. Importantly, these services are reimbursable whether they are provided by physicians or nurses in any setting.
Funded by a grant from the National Institutes of Health, this Medicare ACP Uptake study uses both quantitative and qualitative methods to provide a unique scientific examination of the use of ACP discussions and their impact on the intensity and outcomes of care received by seriously ill patients nearing the end of life.
Principal Investigator: Joel Weissman (firstname.lastname@example.org)
Project Director: Amana Reich (email@example.com)
Advance care planning, or ACP, conversations are discussions that occur between patients, caregivers, and clinicians about preferences for future medical care if your health declines. These conversations include discussing what patients value, their hopes, goals and concerns about the future that could influence the type of medical care they want or don’t want.
As part of the larger study, we have been funded to support two supplemental areas of research. One supplement, for Alzheimer’s Disease and Associated Dementias (ADRD) includes a special focus on patients with dementia who are facing surgery, their caregivers, and clinical providers to better understand the frequency, timing, and associated factors to having ACP conversations among this population.
An additional focus of the broader ACP work is to explore the experiences of Sexual and Gender Minorities (SGM) and how ACP services are provided to this population of patients. This mixed-methods approach includes an analysis of Medicare claims, a nationally-representative survey, and interviews with individuals who identify as SGM.
Alzheimer's Disease and Related Dementia (ADRD)
Identifying Barriers, Facilitators and Outcomes of Advance Care Planning Conversations with Medicare Patients with Alzheimer’s Diseases and Related Dementias (ADRD) Facing Surgery
Persons with dementia (PWD) are a high priority patient population who face unique challenges articulating preferences and participating in their own care because of cognitive impairment, the presence of multiple formal and informal surrogates, and the need to coordinate multiple care providers. Similarly, providers treating patients with Alzheimer’s Disease and Related Dementias (ADRD) often grapple with how to best engage them in surgical decision-making and advance care planning. Often, these complex decisions involve multiple providers who may be unsure or may disagree about how to best proceed, resulting in distress for providers and inconsistency for patients and families. A gap remains in understanding the practices and approaches that support goal concordant care for consequential and time-sensitive health care decisions such as surgery for this population.
Sexual and Gender Minorities (SGM)
Advance Care Planning (ACP) Among Sexual and Gender Minority Individuals and Their Caregivers
Uptake of ACP by priority populations such as Sexual and Gender Minority (SGM) populations is of particular interest due to inequitable healthcare experiences in a wide variety of settings.
There are a number of reasons to focus on SGM. There are currently 1.1. million SGM adults in the United States 65 years and older. By 2030 there will be about 7 million.12 SGM persons have reduced access to medical care and greater levels of discrimination in health care settings than their heterosexual and cisgender counterparts
Advance Care Planning (ACP) aims to ensure people receive medical care that is consistent with their goals, preferences, and values as they become seriously ill. Our work in the parent R01 is to study the trends, barriers, and facilitators to the uptake of ACP and its impact on care. However, there exists scant research on ACP in the SGM community. This mixed-methods supplement builds on our existing research to better understand ACP among SGM adults and their caregivers.
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