Symptoms and General Pathology

All Conditions

Heart and Blood Diseases

Urinary Tract, Sexual Organs, and Pregnancy Conditions

Neoplasms

Nutritional and Metabolic Diseases

Gland and Hormone Related Diseases

Respiratory Tract (Lung and Bronchial) Diseases

Digestive System Diseases

Nervous System Diseases

Skin and Connective Tissue Diseases

Rare Diseases

Sclerosis

Heart Failure

Kidney Diseases

Neoplasm Metastasis

Diabetes Mellitus

Lung Diseases

Lung Diseases, Obstructive

Pulmonary Disease, Chronic Obstructive

Liver Diseases

Kidney Failure, Chronic

Parkinson Disease

Motor Neuron Disease

Amyotrophic Lateral Sclerosis

Lung Diseases, Interstitial

Death

End Stage Liver Disease

Diabetes Complications

Renal Insufficiency

Heart Diseases

Parkinsonian Disorders

Ganglion Cysts

Synovial Cyst

Basal Ganglia Diseases

Brain Diseases

Central Nervous System Diseases

Movement Disorders

Synucleinopathies

Neurodegenerative Diseases

Respiratory Tract Diseases

Chronic Disease

Disease Attributes

Gastrointestinal Diseases

Urologic Diseases

Urogenital Diseases

Female Urogenital Diseases

Pregnancy Complications

Female Urogenital Diseases and Pregnancy Complications

Male Urogenital Diseases

Renal Insufficiency, Chronic

Neuromuscular Diseases

Spinal Cord Diseases

TDP-43 Proteinopathies

Proteostasis Deficiencies

Metabolic Diseases

Hepatic Insufficiency

Liver Failure

Endocrine System Diseases

Chronic Graft Versus Host Disease

Primary Lateral Sclerosis

In the structured advance care planning approach, patients will participate in a 60 to 90 minute facilitated advance care planning conversation with a trained person using Respecting Choices (First Steps) guide and will receive a state advance directive form. The advance care planning facilitator will follow-up as needed after the session to answer additional questions.

In the patient-driven advance care planning approach, patients receive a Five Wishes Form (easy to understand advance directive written in plain language), a state advance directive form, and at least two follow-up phone calls with an advance care planning contact who will answer questions.

Respecting Choices First Steps

Five Wishes Form

Kimberly Johnson, MD

This study compares the effectiveness of two different approaches to advance care planning among older African Americans and older Whites living in the community. The two approaches are a structured approach with an advance care planning conversation led by a trained person using Respecting Choices (First Steps) and a patient-driven approach which includes a Five Wishes advance care planning form written in plain language. The study will determine which approach is more effective at increasing advance care planning within each racial group and reducing differences between the two groups in advance care planning.

Advance care planning (ACP) involves patients making decisions about the kind of medical care they would want to receive if they became unable to speak for themselves. Patients share their wishes in a written document (living will or healthcare proxy) and/or discuss their wishes with family, friends, and doctors. ACP improves the quality of end-of-life care by increasing the likelihood that patients receive care that reflects their preferences and values. Seriously ill African Americans are less likely to take part in advance care planning and experience lower quality care at the end of life, including poorer communication with clinicians and a lower likelihood of receiving the kind of care that they would want.

This study will include 800 seriously or chronically ill community-dwelling older adults (equal number of African Americans and whites) and their caregivers from 10 primary care practices at five medical centers in the Deep South. Eligible patients include those with cancer, advanced heart disease, advanced lung disease, end-stage kidney disease, cirrhosis, diabetes with severe complications, recurrent hospitalizations, or difficulty with basic activities of daily living. For each enrolled patient, one caregiver who is likely to assist the patient with healthcare decisions is also eligible to participate.

The goals of the study are to:

* Compare the effectiveness of two approaches to increasing formal advance care planning (completing written documents like living wills, health care proxies, medical orders for life-sustaining treatments, or other advance directives) and informal advance care planning (having conversations with doctors, family, friends, and others about wishes for future healthcare) for African Americans and for Whites.
* Determine which intervention is most effective in reducing differences between African Americans and Whites in rates of advance care planning.
* Determine whether the effectiveness of the advance care planning approach differs based on whether the person assisting with advance care planning is of the same or different race as the patient.

Administered by community health workers, the two advance care planning approaches which will be compared are:

* Patient-driven approach which includes a Five Wishes Form (advance directive written in easy to understand language)
* Structured approach with an advance care planning conversation led by a trained person using Respecting Choices (First Step) conversation guide.

Mixed-methods, longitudinal, multi-site study, cluster randomized trial

Reducing Disparities in the Quality of Advance Care Planning for Older Adults

REducing Disparities in the QUALity of Palliative Care for Older African Americans Through Improved Advance Care Planning (EQUAL ACP)

completion of an advance care planning document (living will, healthcare proxy, medical orders, Five Wishes, other); discussion with clinician documented in chart, patient report of advance care planning discussion (designated decision-maker, discussed values, goals, preferences) with family, friends, or others

Difference of proportion in whites versus African Americans who complete formal or informal advance care planning

Measure assessing patient's readiness to name decision-maker, discuss care preferences, complete legal advance directive

Measure (Promis 29) assessing quality of life, including domains of physical functional, emotional, and social well-being

Duke University

Spots Global Cancer Trial Database for five wishes form