Communication surrounding serious illness decision making is formalized in Advance Care
      Planning (ACP), a process involving verbal or written information designed to inform patients
      of possible medical options including palliative and hospice care services. Numerous studies
      have suggested that improved ACP rates better align health care delivery with patient
      preferences. Despite expansion of ACP services in the health care system, Native Hawaiians
      (NHs) consistently have negligible rates of ACP and low use of palliative and hospice care
      services. To address these shortcomings, our multi-disciplinary community and research group
      has partnered to create the I kua na'u "Let Me Carry Out Your Last Wishes" ACP video
      intervention. Our Community-Based Collaborative Approach will create, develop and test the I
      kua na'u comprehensive video-based ACP program honoring the history, opinions, and culture of
      NHs. Indeed, NH culture is primarily an oral tradition in which the spoken word permeates the
      life of NHs and is the normal way of interacting with neighbors, including in its most recent
      adaptation with the use of video media. The I kua na'u program will include videos tailored
      for the different settings in which older NHs live and get medical care. The videos will
      explain the importance of ACP, empower NHs to tell their story ('olelo Kama'ilio; "Talk
      Story") by allowing the recording of personal video declarations of ACP wishes, and the
      ability to share the personal video declaration with family, friends and clinicians. The
      overall objective is to conduct a five-year program that includes two years of development of
      the I kua na'u ACP video program with focus group testing, and then three years of
      implementation in the NH community. Demonstrating the effectiveness of using the video
      program in NHs represents an essential step to implement this tool in practice. The Specific
      Aim is to compare the ACP engagement, knowledge, decisional conflict, and ACP completion
      rates in 220 NHs over the age of 55 in: (a) a pre-post study design in 110 people living on
      Homestead or Assisted Living using the video intervention, and (b) a randomized trial of 110
      people recruited from Ambulatory Clinics.

I Kua na'u Advance Care Planning for Native Hawaiian Elders

Advance Care Planning

This project entitled, "I kua na'u" in Hawaiian, translates to "Let me carry out your last
      wishes." This work aims to honor the Native Hawaiian (NH) sense of cultural context for
      initiating a conversation between elders and their families through a video intervention to
      promote Advance Care Planning (ACP) in a manner that respectfully communicates the personal
      preferences of NH elders to their family, caregivers and the health care system. The full I
      kua na'u program will examine a video enhanced intervention designed by and for Native
      Hawaiians (NH) and their family caregivers in three distinct settings: 1) NH Homesteads, 2)
      Assisted Living, and 3) Ambulatory Clinics. The overall objective of the present proposal is
      to conduct the first phase of the program, which covers the planned two year development
      period of the I kua na'u ACP video program. During this time, we will conduct a series of
      focus groups and one-on-one stakeholder interviews to inform the creation of: A) NH ACP
      videos; B) a NH personal video declaration process; and, C) NH community members training
      program to deliver the intervention.

      Native Hawaiians (NHs), the indigenous people of Hawai'i, comprise a diverse population of
      more than 500,000 individuals living in the US and are one of the fastest growing
      racial/ethnic groups in the country. The highest concentration (55%) of NHs live in the State
      of Hawai'i, the ancestral home of all NH people. Several studies have established a higher
      mortality rate among NHs that occurs at an age 10-15 years earlier than the general US
      population. A recent study found that NHs had the lowest life expectancy of the five major
      ethnic groups in the state of Hawai'i, with a consistent 10-year gap between NHs and the
      longest living ethnic group. According to the US Census 2010, ~100,000 NHs over the age of 50
      currently live in the US with 60% residing in the State of Hawai'i. Yet few studies have
      examined the use of end-of-life care and advance care planning in NHs who are at high risk
      for more frequent and earlier age death. Thus, this proposal aims to fill the gap in our
      understanding of ACP among NH elders and will develop, test and disseminate a culturally
      informed intervention to improve ACP practices among NH elders and their families.

      Mounting evidence suggests that NHs rarely participate in ACP or communicate their ACP wishes
      to their families, who are often the primary caregivers. Palliative care and hospice services
      have been associated with less intensive interventions at the end of life, possibly due to
      improved communication and decision making. Learning about ACP and communicating with family
      and providers is the best way for a person to get health care that is concordant with one's
      wishes and values. NHs represent a unique population with distinct cultural, epidemiological,
      genetic, and psychosocial characteristics. Evidence suggests that they also have distinct
      health care and health communication preferences. Although some of these distinct features
      and preferences may contribute to disparities in health care for NHs with advanced illness,
      these disparities may also be due to identified health communication gaps.

      While the topic of ACP communication specifically is understudied, critical health
      communication gaps exist for many NHs. Previous research by members of this study team and
      others have identified relevant health communication challenges in NH communities. For
      instance, practical challenges included jargon and lack of plain English. Interpersonal
      issues included doctors rushing, doctors not assessing comprehension, and doctors not
      treating respondents as people. Respondents noted that they would often not ask questions
      even when they knew they did not understand because they did not want the provider to think
      negatively of them. Overarching themes to improve communication gaps included: the importance
      of family and community in health information dissemination, the importance of personal
      experience and relationships to the salience of health information, and the desire for local
      cultural relevance in health communication.

      ACP seeks to ensure that patients receive medical care consistent with their values, goals
      and preferences during the advanced stages of a disease when they no longer have capacity to
      make decisions. ACP is the most consistent factor associated with better end-of-life outcomes
      in patients with advanced illness and their caregivers. The lack of ACP is associated with
      more aggressive interventions, more terminal hospitalizations, lower hospice use, and worse
      caregiver burden and family bereavement outcomes. Unfortunately, ACP completion remains
      inadequate, and has remained consistently low. Studies show that traditional written and
      verbal ACP does not effectively inform many patients and caregivers, and often occurs late in
      the disease process, which is especially true in vulnerable communities such as NHs. Other
      common barriers to ACP include lack of tailoring for NHs, variable quality of clinician
      communication, complex relationships between families and clinicians regarding decision
      making, and the inability for patients to realistically envision accurate future health
      states. These barriers present challenges as well as an opportunity. This opportunity for
      change is a major goal of this proposal to evaluate not just an intervention and its
      meaningfulness to individuals, caretakers, and family, but also, to educate and train our
      communities on how to deploy the intervention in real world settings. Individuals from our NH
      communities will be trained to carry out the intervention and to implement this training
      using our community peer-to-peer model.

I kua na'u "Let Me Carry Out Your Last Wishes"

I Kua na'u "Let Me Carry Out Your Last Wishes" Advance Care Planning for Native Hawaiian Elders - Trial Phase

Six questions regarding knowledge of ACP which were used and validated in previous studies will be asked. A score of 0-6 will be assigned. Higher scores indicate more knowledge. Questions will be asked before and after the intervention is administered.

Six questions regarding knowledge of ACP which were used and validated in previous studies will be asked. A score of 0-6 will be assigned. Higher scores indicate more knowledge.

Participants will be asked 2 questions about their end of life health care preferences. Any change in response will be coded as a change. Questions will be asked before and after the intervention is administered.

Decisional conflict will be measured with a 2 question survey that returns a score of 0-10. Higher scores indicate more conflict. Questions will be asked before and after the intervention is administered.

Four validated likert scale questions regarding ACP engagement are averaged to return an overall score of 0-5. Higher scores indicate increased engagement. Questions will be asked before and after the intervention is administered.

Participants will be asked 2 questions about their end of life health care preferences. Any change in response will be coded as a change. Comparison will be post-intervention vs control.

Decisional conflict will be measured with a 2 question survey that returns a score of 0-10. Higher scores indicate more conflict. Comparison will be post-intervention vs control.

Four validated likert scale questions regarding ACP engagement are averaged to return an overall score of 0-5. Higher scores indicate increased engagement. Comparison will be post-intervention vs control.

Native Hawaiian participants from Homestead and Group Assisted Living (N=110) will partake in a pre-post study design. Participants will receive a baseline survey (as described below), view the ACP video intervention, and receive a post-intervention survey, which includes the same items as the baseline survey. In-person or phone interviews will be done at three and six months.

In the ambulatory clinics we will conduct a randomized controlled trial (N=110), and randomize (1:1) to either the video (intervention) or usual care (control) arm. The control group will receive usual care. All participants will have a baseline survey, be randomized to intervention or control, and receive a post-intervention survey, which includes the same items as the baseline survey. Follow-up in person or by phone interviews will be done at three and six months.

In the ambulatory clinics we will conduct a randomized controlled trial (N=110), and randomize (1:1) to either the video (intervention) or usual care (control) arm. The intervention group will use the ACP video decision aid. All participants will have a baseline survey, be randomized to intervention or control, and receive a post-intervention survey, which includes the same items as the baseline survey. Follow-up in person or by phone interviews will be done at three and six months.

I Kua na'u Advance Care Planning for Native Hawaiian Elders

About this trial

Study ID

Status

Type

Phase

Placebo

Accepting

Trial Timing

What is this trial about?

What are the Participation Requirements?

Locations

Location

Status