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Health Care Design Conference - 2013 Boston

Agenda

End-of-Life Care Challenge from the California HealthCare Foundation: Catalyzing Communication about End-of-Life Care

Thanks to all who contributed their energy and creativity to the challenge of promoting awareness and developing compelling experiences designed to increase participation in discussion on end-of-life wishes. We received over 45 submissions, representing a wide range of ideas from in-person events, campaigns, videos, social media engagement, and online apps and tools. See the Challenge Overview page for additional background.


WINNER - BEST OVERALL SOLUTION

Michael Kersten
Univeristy of California Berkeley
Advance Care Planning on Facebook: Reaching the Non-activated
ACP Facebook
PowerPoint Show Abstract

The digital age is upon us. By providing people an advance care plan that is linked to their Facebook account, we can take advantage of the modern person's propensity for online solutions and recreation. Furthermore, this advance directive does not need to be safeguarded; it is as mobile and available as the nearest smartphone, iPad, or laptop, with only the friends and family one designates able to retrieve it.

Therefore, my solution is an application for Facebook where a user invites friends and family members into an advance care planning network. This personalizes the process and makes it relational, hence more likely to be completed. A color-coding scheme highlights the progress toward completion of each member in the network to encourage completion. Once completed, that member is automatically invited to begin a network of their own, multiplying the effects of the grassroots effort. By scrolling over the names of the members of your network you can message them, allow them to access your ACP, and ask them to be a healthcare proxy.

This initiative can leverage ACP forms that are already in development. The form should include an online presence and translatability to app format, include simple and easy language, maintain a high level of respect and national implementation, be available in multiple languages, and be appropriate for the relative health of the average Facebook user (compared to POLST for example). As an example, Aging with Dignity currently charges $1/online version of the Five Wishes document. This cost could be subsidized by appealing to healthcare systems, insurance companies, and foundations that are already contributing to ACP advocacy so that the Facebook app would be free. Donations would always be welcome from users, of course, and a PayPal link would make that accessible for them.

Once a partnership with an Advanced Care Plan provider is created and the app developed, I envision a three phase marketing implementation. The first is identifying ACP champions in as many national organizations as possible to begin "My ACP Networks" through their personal and organization Facebook page(s). The second is using the app page of Facebook to keep people interested and connected through event/webinar invitations, news briefs about ACP, success stories of patient-centered care, and an interactive forum (maybe even MD advice). The third phase will involve using the geography mapping of the app usage that Facebook tracks to identify areas of low completion for more targeted marketing and appeals to local champions. Total numbers can be tracked and celebrated.

For the demographics this solution does not directly address, the awareness it raises about this issue could very well provide the advocacy those other groups need.



WINNER - HONORABLE MENTION

The Action Mill and Dr. Karl Ahlswede
A Gift of Grace
A Gift Of Grace
http://actionmill.com/grace
The Action Mill
http://karlahlswede.com/
Death and Design Show Abstract

A Gift of Grace is a service designed to help you get unstuck and make your wishes for the end of your life known through a series of gifts. You receive A Gift of Grace (in the form of a box of cards) from someone nearing the end of life. You then use the cards to gain clarity and make your own wishes known, which is a gift to your loved ones.

Here's how it works: A person who is nearing the end of life (or their family) decide that they want to use their experience to benefit their community – to leave a legacy of better end of life planning. They might give you a box of Gift of Grace cards when you visit, or they could decide that they want you to take one when you attend the memorial service.

When you receive a box, you will be asked to sign a book – similar to a guest book – and commit to fill out your cards by a certain date.

This is the first gift: a tangible tool that you use to make your own end of life wishes clearer. You receive and use this gift in honor of someone you care about.

Each box has three types of cards: Questions, Activities, and Statements. Instructions help you fill out or use each card and include tips on having a discussion with your family about your wishes and filling out an Advance Directive.

Each Question card has a question about an end of life topic – what a person values, what they believe, or what kind of care they are comfortable with.

Activity cards are actions that are taken based on the questions. These include specific steps toward codifying end of life plans as well as things you can do right away to improve your life, like basing a New Years resolution on what you value most in life.

Statement cards are examples of things other people have said about the end of their lives. You can choose any that you agree with, edit any that are similar to your beliefs (by writing directly on the card), and discard any that you disagree with, so you wind up with a set of statements that are true for you.

Once you've filled out the cards, you have a box full of prompts for two important conversations: sharing your desires with your loved ones and filling out an Advance Directive. The completed boxes are a condensation of your wishes, and are designed to be displayed in your home and available for you to update and for your family to reference if they need to make decisions for you.

This is the second gift: from you to your loved ones. By leaving behind a box of values and answers – and the conversations and legal documents they lead to – your family can be spared some of the uncertainty that compounds the trauma of making end of life decisions for you.



WINNER - HONORABLE MENTION

Joanna L. Hart, MD; John Hansen-Flaschen, MD
Fostering Improvement in End-of-life Decision Science program, University of Pennsylvania
The View from the Bed
A View From THe Bed
http://chibe.upenn.edu/fields-program
Video Show Abstract

A significant barrier to motivating individuals to complete advanced care planning is that it is difficult to anticipate or imagine such a situation. Even for those with chronic medical conditions, a serious illness that strips them of their voice and mind feels distant. Therefore, we propose a photography project and informational campaign that connects them not to the patient in the bed but to the family surrounding that patient. We will gather images from the medical intensive care unit, where we both work as physicians and where Dr. Hansen-Flaschen has conducted past photography projects. Using a stationary, remote-activated camera with a wide-angle lens placed at the head of the bed, we will gather images from the perspective of the patient. None of these images will feature the patient. The resulting photographs will instead tell the story of critical illness through the family members gathered around the bedside. Family members arrive from around the world and take up residence within the cramped and noisy room. They openly show their exhaustion, hope, commitment, fear, and love. Their faces reflect the impact of critical illness more completely than sedated or dying patients. Capturing the emotions of family members will serve as powerful motivators to individuals who have not considered or completed advanced care planning. Rather than asking them to connect to a body in a bed, we are asking them to connect with people who may remind them of their loved ones. In finding these connections, they are able to feel the desire and obligation to minimize the burden to these important individuals.

We will recruit families of MICU patients willing to participate in this valuable project. In particular, we seek to find African-American and Latino families willing to serve as role models for these communities so that the connections viewers feel are enhanced by similar appearances. Additionally, the use of these images would not require viewers to have a high degree of health or written literacy to understand the implications of critical illness.

We will use the powerful photographs resulting from this project in an informational campaign to promote advanced care planning, including advanced directives and physician orders for life-sustaining therapies. The images would appear in gallery or collection form for display in both health care and public venues as well as selected images used on materials to promote advanced care planning. They would be used to introduce the need for advanced care planning to individuals who may not have considered it and to help those who had find the motivation needed to follow through. Viewers would be directed to existing web-based resources as well as their personal physicians.

Dr. Hansen-Flaschen's past photography projects have been supported by MICU staff and families. One such project, "Family Shrines of Hope," consists of photographs of the collections of messages and artifacts placed on the walls of the MICU by family members. Four of these photographs are displayed as part of the permanent collection of the University of Pennsylvania Biomedical Library.



ALL SUBMISSIONS (in random order)

Laura Petrillo
University of California, San Francisco
Housestaff Activation Project: Before Discharge, Take Your Patient's POLST
PowerPoint Show Abstract

Our solution to catalyze communication about end of life care is to springboard from a process that is already in place- the code status conversation during an inpatient hospitalization- to increase the rate of documentation of POLST forms for frail and vulnerable patients. A hospitalization is a time when patients think critically about medical decisions, often with their loved ones and a team of medical professionals, and have frequent conversations as their health status changes. There is commonly a multidisciplinary staff, including social workers and case managers, who can help patients think about their preferences and connect them with social support. Doctors, often resident physicians, routinely ask patients to identify a surrogate and make a choices about CPR and intubation, ideas that patients often have not explored with their doctors or loved ones.

The efforts of this initiative will be centered in an academic/community hospital in San Francisco. The target population will be not the patients themselves but rather the housestaff who commonly discuss code status during an inpatient hospitalization. Housestaff are an ideal group to target and educate because they often have the most direct contact with patients and families. In addition, they are early in their training and thus more likely to carry forward practices that they develop in residency into their careers. University of California, San Francisco (UCSF) will be the pilot site for resident activation, with a plan to disseminate to other residency programs if successful.

The goal of the initiative will be to have a POLST documented at the time of discharge for all patients who choose DNR code status during an inpatient hospitalization. The POLST will be both given to the patient and uploaded into the medical chart for future access.

The steps of the project will be to create a team of housestaff POLST champions across disciplines (medicine, neurology, cardiology, oncology) to create a process to integrate a POLST discussion into the residents' workflow and the medical record. Residents will be educated about how to have a POLST discussion. Participation in the initiative will be incentivized by bonuses (from the HXD prize money) to teams with the highest rate of POLST documentation, and resident teams will get midpoint feedback on their performance.

This initiative builds on work already underway at the San Francisco VA Medical Center to increase the rate of POLST documentation for DNR inpatients. The housestaff at UCSF also rotate at San Francisco General Hospital, a safety-net community hospital, as well as UCSF-Parnassus, an academic tertiary care hospital. The goal of this initiative would be to expand the efforts housestaff have started at the VA to the other two hospitals in order to reach a broader patient population.

On a broader scale, this initiative aims to 1) increase the rate of conversations about end of life care among patients, their doctors and surrogates, 2) to create clear systems for communication about patient preferences in the health record, and 3) to reach vulnerable patients during an important time in their health trajectory.



Blaine Warkentine
Vimty
Vimty
Pitch Deck
Site Show Abstract

Vimty is End of Life Decision-Support Software. First, Vimty helps individuals easily and clearly understand their end-of-life choices and to document, store, update and share their decisions with their healthcare providers, assigned healthcare agents and family members so that their advance directive wishes are understood, communicated, accepted, advocated and followed. This solution solves the problems and barriers that are present with existing solutions such as Five Wishes or Legal Zoom including:

  • Friendly, Intelligent, Intuitive, Easy-to-Use Consumer Experience
  • Automated population of legal documents (health care proxy/advocate and advance directives)
  • Exclusive agreements with eNotary for document validation for residents of any state that witnesses the profile of the user as well as the document created
  • Cutting-edge designs and modules that begin a relationship and help people complete the process
  • Brings a unique health care proxy engagement model to the market that multiplies reach and speed of adoption
  • The model integrates with the marketing and customer support groups of health insurance enterprises

Second. Will have a positive impact on health economics but health care savings will not be part of the branded messaging. Rather, it is implied and understood from the provider side.

Lastly. We give the user a visualization of their own advanced directive decisions using a patented design and interactive infographic that can be immediately understood across ten important decision areas giving all parties, including health professionals, a comprehensive view of the decisions made in mere seconds.



Elizabeth Hughes
Insurance
Show Abstract

Here's my idea: working ADs into insurance renewal could be a simple fix. We have organ donor option on our Driver's License and it happens without fan fare. Why couldn't we build Advance Directives into our auto ,life , or health insurance which must be renewed annually. No fanfare, do it as many places as possible, make it a part of things. Why does it all have to be such a big deal? After all, its possible a car accident will take us out. Life insurance, no brainer, and health insurance, the same.



Al Lewis
Disease Management Purchasing Consortium
Changing the "Default" Provision for EOL Care
www.dismgmt.com Show Abstract

My "solution" (like your other entries, it won't solve everything) is to change the default provision for EOL care. If there is no advance directive specifying otherwise, there are guidelines for conservative EOL care. Remember, the majority of people want to die at home, but they die in the hospital. The reason is largely due to the default option being aggressive care. There is no other aspect of medicine where if a patient or guardian doesn't specify, the patient gets "the works."

So you have a committee create default protocols for the most common EOL situations. Protocols for most medical treatments are so widely followed and well-established that they are used as a defense for malpractice claims today. The law reads something like this: If a plaintiff (patient) alleges that care was substandard and a physician can show that the care was provided according to a published standard, the burden falls on the plaintiff to prove substandard care. If the care was not provided according to the published standard, the burden falls on the physician to show a medically sound reason for the deviation.

Therefore a physician or hospital following the default protocol is in a "safe harbor."

And that's it: no rationing, no take-aways – anyone who wants aggressive care can get it, but they have to want it.

The thought process that brought me to it? It was more of a Eureka-moment than a thought process, to be honest.

I'm sorry if this isn't a long or detailed proposal and I would understand if it doesn't fit your criteria and therefore can't win, but please don't discard it. It wouldn't even require an Act of Congress since no benefits are changed. It could be done administratively by HHS.



Trudy James
Heartwork
Successful Short Course on End-of-Life Planning
www.trudyjamesheartwork.com
PowerPoint Show Abstract

Most people in our society are reluctant to speak of dying, much less make plans for their own death. Without a plan for making decisions when a health crisis appears, individuals and family members face challenges and chaos without knowing how to respond. My years of frontline experience with end-of-life patients blessed me with an appreciation for the difference between a "good death" (peaceful, with dignity) and a "bad death" (pain-filled, prolonged by "medical heroics," and debilitating to survivors).

Over the past four years I have developed a four-session course titled "A Gift for Yourself and Your Loved Ones" using The Five Wishes advance directive as a working document. The goal of the series is to empower participants to make informed decisions about their own end-of-life choices, record those choices and discuss them with family members and providers. I have presented this fee-based (sliding scale) series more than 40 times, with almost 500 people participating. It is effective for men and women ages 40 to 90 from diverse ethnic backgrounds, for those in good health and in various stages of illness.

Participants are recruited through presentations in senior centers, CCRCs, churches, civic groups, and by word of mouth. Most people who attend have never attempted to complete an advance directive; few have even heard of a POLST form.

For participants to overcome their death-denying or death-avoidant societal conditioning and to become comfortable talking about their own death requires facilitated discussion and interaction with others. Most individuals are emotionally unable to complete this work on their own. Initially, group members are only vaguely aware of modern medicine's capacity to prolong life in once-unimaginable ways; they are unaware of statistics regarding the manner and setting where people die; few understand end-of-life treatments and resources. Most (including health care professionals) have never discussed death with family members.

The four sessions, which include reading materials and homework, build on each other in a manner that allows participants to engage the issues together--within a supportive emotional context. Sharing stories about the deaths of friends and family members is an important aspect of this journey into action. Among the subjects covered are appropriate health care agents, life supports, hospice care, palliative care, CPR, DNR, quality of life, VSED, medical costs, organ donation, POLST, care of the body, grief, and legacy, including specific examples. Participants also receive an annotated bibliography of written and media resources.

By the end of the course, approximately 75 percent have completed their advance directive; those who need it have requested a POLST form from their doctors. Groups frequently make a plan to meet again in six months to report on their conversations with family members, doctors and health care agents. If I receive this award, I will pay a professional to film the complete series and create a DVD for physicians to distribute to their patients – demonstrating how advance directives can actually be completed by ordinary people before there is a crisis.



Susan Merel, Carol Kummet, Rowell Llanillo, Chris Knight
The Question Project: Matching Healthcare to Patients' Goals
www.thequestionproject.org
PDF Show Abstract

We propose the Question Project, an educational campaign to educate primary care providers (physicians, nurse practitioners and physician assistants) and patients about the importance of advance care planning as well as increase consideration of early palliative care in appropriate patients.

There are two questions in the Question Project. First, we will remind providers to ask all patients about advance directives. Second, we will increase the number of patients considered for early palliative care by raising awareness of "the surprise question," popularized by Joann Lynn and colleagues. This refers to asking if one would be surprised if a patient died within the next year; if one would not be surprised, that patient may be appropriate for palliative care. While increasing the use of advance directives is an important goal, we think that increasing the number of patients who are considered for palliative care services is equally important and that these two goals are complementary.

Palliative care has been shown to improve communication with patients, improve symptom management, decrease healthcare utilization and reduce costs. In a landmark randomized controlled trial of early palliative care in patients with lung cancer, patients who received palliative care in addition to usual oncologic care had a longer median survival measured in months.

Evidence suggests that focusing efforts on educating and activating primary care providers about advance directives will be effective. For example, a study of internal medicine physicians identified a lack of education about advance directives as a barrier to discussing these with patients. A second study of elderly patients showed that those who had discussed advance directives with their physician were more likely to have completed a document than those who had not. Finally, an intervention aimed at changing physician behavior that included endorsement by a physician opinion leader and personalized outreach to physicians resulted in a 20-fold increase in the odds of creating a new advance directive. Elements of the Question Project are as follows:

  1. 1. The recruitment process
    a. A series of inspirational CME events statewide for primary care providers.
    b. An email campaign to primary providers.
    c. Direct outreach to opinion leaders in healthcare institutions.
  2. 2. The provider intervention
    a. Providers would be given copies of appropriate advance directives as well as information about local palliative care services.
    b. Providers would be given a tasteful bracelet with the campaign logo and web address.
    c. Providers would discuss advance directives with patients during a clinic visit.
  3. 3. The public campaign
    a. Website explaining the importance of advance directives and the benefits of palliative care for appropriate patients, with links to existing resources.
    b. Informational brochures and posters in participating clinic waiting rooms.
    c. Patients completing an advance directive would receive a bracelet to wear to promote awareness of the campaign.
  4. 4. Measurement
    a. Individual clinics would develop appropriate measurement systems to evaluate the effect of the intervention.
    b. Data would be shared centrally to disseminate best practices.



Shawnette Adams
End-of-Life Care: A Novel Approach
http://share.axure.com/RZLOXD/
PowerPoint Show Abstract

This submission for the End-of-Life Care Challenge addresses advance directives and supports the manner in which people can be compelled to complete a directive for future emergency medical care. I have designed a website prototype that will assist people in thinking about, learning about and planning for their healthcare advance directive.

Although the vehicle is a website, the design of this website affords the end user not only a clear, straightforward way to complete an advance directive, but also provides information concerning why such planning is important and how to complete the form.

One of the key aspects of this website is the implementation of various 'what if' video scenarios that will allow the end user to understand the need for an advance directive. Planning is an important aspect directly related to advance directives, however, people may not realize that they plan every day, no matter how small or how large the event/activity they are planning for. In addition to the 'what if' video scenarios, the information to assist the end user in deciding their agent and health care choices are presented in quick and easy to scan bullets. This format will not overwhelm the end user, but still provide the pertinent information concerning advance directives. After learning about the advance directive, the end user can then immediately fill out and print their advance directive and the signature pages that must accompany it.



Trisha Paul, Jennifer Xu
Grayscale: End-of-life decisions are not in black and white.
http://thegrayscale.weebly.com
PowerPoint Show Abstract

Introduction There are a number of limitations to the current state of advance care planning during the end of life. Studies have shown that doctors are not always the best arbiters of a patient's end-of-life decisions. This is because:

  • Time is limited.
  • Quality of life is not often or accurately measured in clinical trials.
  • When recommending one course of action over another, physicians are saddled with their own biases like costs of care, which tend to underestimate the quality of life of patients with chronic illnesses or disabilities.
  • Patients have often reported that doctors offer them too many options with little context.
Our project, Grayscale, intends to fill in a crucial gap within the decision-making process: personal narrative. Grayscale will provide a series of video aids for patients who are approaching the end of life narrated by patients who are themselves undergoing a similar ordeal. It will humanize a process that is usually shrouded in clinical language by providing patients with personal testimonials by other, anonymous patients who have already seriously thought through all aspects of topics like organ donation, palliative care, the definition of life support, health care proxy, etc. We hope, eventually, that the Grayscale website could be "prescribed" by doctors to patients who are at the beginning of broaching these end-of-life conversations.

It is important to point out that Grayscale will act as a supplementary decision aid that accompanies existent accessible versions of advance care directives such as Prepare or Five Wishes; it will not replace them. The video aids contained in Grayscale are supplementary and should be used alongside an advance directive of the patient's choice. Though Prepare and Five Wishes do quality jobs of humanizing the advance directive forms, they lack the storytelling aspect of physically showing patients grappling with these end-of-life decisions. With Grayscale, we hope to bring these options to life. They are intended to guide, but not instruct, to provide real-life examples of decisions that are often difficult. We see Grayscale and ventures like Five Wishes, together, as turning advance care planning from forms into conversations.

Organization

Grayscale will be divided into two halves, each of which will be narrated in video form.
  1. instructional aids that walk the viewer through the steps of the advance directive form
  2. "stories" told by various individuals in various stages of their life narrating their attitudes toward these end-of-life decisions The instructional aids and stories will further be subdivided into five "chapters," each of which will address a different aspect of the decision-making process: 1) health care proxy, 2) definition of life support, 3) palliative care, 4) end-of-life requests, 5) spiritual needs and post-life considerations. The stories will be anonymous and use only first names, but will be not staged and reflect a genuine diversity of thought regarding these end-of-life decisions. We hope that these patients, who will encapsulate a variety of ages, ethnicities, and religions, will act as a representative sample of the individuals who will be viewing the videos.



Susan Lieberman
Helped by Y Collaborative and Women in Transition.
Death, Dying & Dessert
www.susanlieberman.com
http://susanlieberman.com/20-questions-death-dying-and-dessert/
http://susanlieberman.com/death-dying-and-dessert-excerpt/ Show Abstract

This is the most traditional of solutions. After years of talking with healthy people about end-of-life issues, it was clear to me that talk in the media is not translating to talk in kitchens and living rooms. I spoke to the Houston Women's Bar Association. In a room of 25 lawyers, only seven had wills. Same stats at M.D. Anderson.

So I wrote a book, Death, Dying & Dessert. Reflections on 20 Questions About Dying. to get people thinking, talking and acting. I've read dozens of good books about end-of-life and talk about more than twenty of them as well of lots of websites.

The book makes clear why you want to complete an advance directive, a healthcare proxy, a financial power of attorney, a supplemental letter and how to do it for free sitting in the kitchen. It talks about POLST, explains it and says that even if your state doesn't require a POLST, you want to know about it. It talks about ways to start family conversations and how to talk with doctors. In the short time the book has been in people's hands–-still a small sample—I see that readers ask for more copies to give to family and friends.

What really works is to have a chance to talk with a group. At the end of the talk, people want a book. And I so very much want them to have it. Like you, I have missionary zeal for this. Dying is seldom easy, but I know we can make it easier. I don't have a public point of view. I don't represent any organization. I want people to want information, to want to think and take action because they come to see that it can make their lives less anxious.

I'm eager to do whatever it takes to put this book in the hands of healthy men and women. I want to partner with groups that have a constituency. I'm happy to give away all the credit and much of the income.

I understand that a book is not what you had in mind for this contest. As my mother said when I told her I was writing my first book, "But dear, why do you want to do that. There are already so many books." But a book, for those who read, sticks. It sits on the kitchen counter. It provides explanation and direction, motivation and inspiration.



Ben Love
Alive Hospice, Inc
The Gift Initiative
www.alivehospice.org
www.thegiftinitiative.org
PowerPoint
Video Show Abstract

The Gift Initiative is a community education collaborative in Tennessee led by Alive Hospice with partners who recognize the critical need for education about advance planning for serious illness and end-of-life care. To put it simply, The Gift Initiative is a gift, the gift of a conversation with our loved ones. This idea reflects the importance of starting the conversation with family and friends regarding Advance Directives.

We developed The Gift Initiative program to be multi-faceted and reach a variety of audiences. It has been used in large town hall formats as well as more intimate settings. We have three PowerPoint presentations available to give to businesses and organizations throughout the community. We utilize community volunteers to facilitate these presentations. We also have wallet sized "gift cards" with the health decision maker's contact information. Recently we filmed a Town Hall on Nashville Public Television and purchased an audience response system to enhance our efforts. Moreover, the Tennessee Disability Pathfinders taught us how best to work with people that have disabilities. Our Gift Initiative website can be converted to Spanish and members of the Hispanic community can print out the Tennessee Advance Directive and Health Care Agent forms in Spanish.

Specifically, The Gift Initiative workshop includes a document and PowerPoint presentation called An Advance Directive in 7 Steps. Included are the forms and process involved in completing a written Advance Directive. Along with the Advance Directive in 7 Steps is the Secret Agent Quiz, which takes the guesswork out of being a Health Care Agent. We also use What is an Advance Directive, What is Palliative Care, and What is Hospice Care. These documents explain the necessity of an Advance Directive in a hospice and palliative care setting. After reviewing these forms, we discuss and complete the Tennessee Advance Directive form and the Tennessee Health Care Agent form. This knowledge helps patients in a more intimate setting along with our nurses and social workers discuss and complete the Tennessee POST form, which is included in their medical records and displayed in the patient's house.

There is a pressing need in our community to improve health literacy regarding the value of ADVANCE planning for end-of-life care. We have seen the benefits of being out in the community and discussing advance directives. Since The Gift Initiative started in November of 2011, we have led 81 Gift Initiative seminars with 2,879 people in attendance. 66% of those surveyed said that they have not completed an Advance Directive, but plan to in the next 3 months. 58% of those in attendance surveyed said that they have not completed a Health Care Agent form, and also plan to in the next 3 months. Our goal is that each attendee of The Gift Initiative seminar completes an Advance Directive and then discusses their wishes with the appropriate family members. These results reflect our intensive education efforts and call to action.



Philip Lisagor, MD, FACS, Larry Weiss, PhD, Rory Berk, MS, Medical Ethics UNSOM
ROYL, LLC
Rest of Your Life, ROYL, planning app
www.TheROYL.com
PowerPoint
ROYL Goals Vision and Mission PowerPoint Show Abstract

ROYL, Rest of Your Life planning app, is an integrated and comprehensive tool to help patients, families and loved ones accomplish Rest of Your Life planning. ROYL starts with advanced care planning, advanced directives and designation of health proxy agents and then moves to the most important issue for Americans, staying at home. This is emphasized through home modifications, home health monitoring and home medication compliance monitors and through earlier home hospice care as appropriate. These home tabs will meet CMS goals of decreased hospitalization and rehospitalizations for congestive heart failure, diabetes and emphysema/COPD. In addition, ROYL provides support for increased patient engagement in medical decisions (http://www.theroyl.com/planning-rest-of-life/medical/family-conference/), important legal issues such as wills and trusts, social service support through existing agencies, organized clergy support, financial planning including a financial intake sheet, contact sheets and important passwords. ROYL also has built in modules to assist in Retirement Living and Healthy Aging and a module dealing with death including caregivers, caring for dying patients, and the death industry (http://www.theroyl.com/planning-rest-of-life/death/).

ROYL allows patients, families and loved ones to develop a personal file with legal documents and also information sheets on the topics mentioned above. ROYL provides a process action check list approach to help individuals accomplish tasks which when viewed together seem overwhelming and hard to get accomplished. ROYL is based upon my forty years of experience as a surgeon including seven years also serving at Chief of Quality Management for the US Army.



Stacy Fischer, Maria Meyer
University of Colorado, SOM, Savannah College of Art and Design
Art installation
Modeled Installation Proposal Show Abstract

Overview: We are proposing an installation piece that is meant to provoke and activate people who visit to start thinking about advance care planning. The installation piece would be an immersive experience that surrounds and engages participants (those visiting the installation), incorporating both visual and auditory senses in the experience. Voices from the community will be integrated into the auditory component of the installation.

Visual Component Description: The installation would require a 25-50 square foot space. This will allow 5 – 10 participants at a time to visit the room. The walls must be cleared and blank. The walls will be painted a charcoal gray for this installation-darkening the space and creating the perception of enclosure and intimacy. Three projectors will be placed throughout the room and will display words-projected font size of 3-5 inches with approximately 2-4 inches between the words. The words will be blocked letters, red in color. The proportion of words are as follows: 1) Prepare 90%; the remaining 10%: 2) MDPOA 3) Decision Maker 4) Advance Directive % 5) Preferences 6) Quality of Life 7) Burden 8) Dignity 9) Autonomy. The words will also have motion slowly moving across the wall until they lose the range of the projector. New words will be continuously produced at the point of origin.

Auditory Component Description: There will be two auditory tracks playing in a continuous loop. The first is composed of voices from the community. Community members who have experienced the death of a loved one will be invited to come and record a brief (2-3 minutes) narrative of the time of their death-we will select a representative sample of death experiences (e.g. unsuccessful CPR, death at home with home hospice, ICU death with vent withdrawal, un-witnessed death in long term care facility, etc.) These stories will play one after the other in a continuous loop. Between stories a generic monotone female voice will verbalize one of the words described above. These words will be repeated and used in a similar proportion to what is seen on the projections.

After leaving the installation: The overall effect will be unsettling and uncomfortable. The immersive visual in the dark room will be almost claustrophobic. The repetitive words and in motion bombardment of message forces visitors to experience the piece. The auditory tracks and contrast of the stories with the more directive monotone message will reverberate with visitors long after they leave, promoting conversation, arguments, and discussion.

Existing literature covering advance care planning will be available outside the installation. This should represent the full spectrum of what is available to the community to access (i.e. Five Wishes, information about POLST). Postcards or handouts can advertise web-based applications (e.g. PREPARE). To further engage the community, several panel talk-back sessions will be planned with experts from the medical community at the time of the opening. This will also be an opportunity to engage media and market/publicize the installation and project.



Wanda Whitaker
Anchored in Spirit
End of Life Advocates
www.anchoredinspirit.com
PowerPoint Show Abstract

By educating EOLD advocates about the process for completing end-of-life directives such as ministers, family doctors, hair stylists, social studies teachers, high school counselors, insurance brokers, notaries, financial planners, TV personalities, etc. and providing a fee and/or rewards through a point system (points can be sponsored by various institutions to create buzz and maximize participation within groups) for their participation, creates a "win" "win" opportunity for all involved parties. Additionally, a variety of advocates are specified for select populations and offer checkpoints at different stages of life. Individuals from varied backgrounds and ages are contacted at some point by one or more of these influential experts. Promotional items such as electronics, airline mileage, sports tickets, concert tickets, gift cards, etc. used for a rewards program are secured by participating organizations through cross-promotional efforts or an independent party.

Each expert would be contacted through the professional organizations and associations they belong to such as the American Medical Association, Black American Hair Care Association and the American Association of Financial Planners. When a family doctor gives health advice, a hair stylist gives advice about a family crisis, or a financial planner advises about a client's finances, they will also discuss and present the end-of-life directives or send them to a place where they can obtain forms. There is already an ongoing relationship established of trust between client and expert in these industries as some go hand-in-hand with end-of-life planning.

As a respected advisor about disease and illness, Dr. Oz is recognized as the leading television personality to have a profound impact on large audiences of Americans. Recruiting him, along with other health related talk show hosts and commercial radio and TV personalities that represent diverse cultures (i.e., comedians and hosts Steve Harvey and George Lopez) provide the credibility and urgency of addressing this issue early on. They will include end-of-life planning in their programming, including how to discuss the issue with family members, POLST and direct audiences to a place where they can obtain forms.

To further support these efforts, vignettes could be produced for radio broadcasts and infomercials would be produced to run late night with pertinent information and include powerful testimonials about end-of-life directives and POLST along with the experts who helped them.

Rewards program can also be offered and implemented in hospitals throughout the system from ER and information desks to doctors offices as well as senior living facilities, senior centers with an assigned notary on-call. To further support these efforts, vignettes could be produced for radio broadcasts and infomercials would be produced to run late night with pertinent information and include powerful testimonials about end-of-life directives and POLST along with the experts who helped them.



John W. Tastad, Dr. Margaret Elizondo
Sharp HealthCare
Interactive End-of-Life Conversations: Dramatic presentations to live audiences that include discussion with a physician and an advance care planning facilitator.
www.sharp.com
ACP Scenarios Video Show Abstract

This brief video (the skits and discussion are great when live!) demonstrates one of our efforts to encourage comprehensive advance care planning through humor-infused, dynamic, interactive presentations. Attendees observe skits that exhibit ACP conversations and participate in vibrant discussion. Pearls and pitfalls of the conversation process are replicated, with attention given to the myriad backgrounds and biases encountered. The video presents two dramatic scenes. Additional scenes not in the video include material directed towards physicians and clinicians have been added.

Scene one: The Conversation

ACP facilitator and Mrs. White, played by Dr. Margaret Elizondo Mrs. White lost her husband who died in the Intensive Care Unit on a ventilator with a feeding tube. She has Chronic Heart Failure and just had an Automatic Implantable Cardioverter Defibrillator placed. A friend saw an ACP talk at the church and recommended a consult for Mrs. White. Mrs. White's daughter Ida, who lives nearby, called the ACP Facilitator just before the visit, and advises that the patient has mild dementia however she wants her mother's wishes to be known and followed. Model the conversation:

Patient preferences? – No ICU/ventilator/feeding tube. Understanding of implications? – Will die naturally. Risks/Benefits/Alternatives – Implications/options explored, understood. Decision specified? – Able to verbalize. Health Care Agent? – Selection considered. Capacity vs. competence? Interactive discussion with the audience. Scene Two: The Other Daughter

ACP Facilitator and Mrs. White's daughter Olivia, played by Dr. Margaret Elizondo Six months later the patient has a stroke, cannot speak or eat, and a feeding tube is offered. Daughter Ida wants hospice care instead. Daughter Olivia, out of town, is adamant that mom have a feeding tube placed. She says she cannot "let her starve to death", and she would feel guilty if her mother was not given nutrition. She questions whether mom had the capacity decide for herself during her ACP consult. Model the Conversation: Moral distress of the daughter. Capacity vs. competence. Hope/guilt – cultural issues re: feeding, "giving up." Feeding/hydration risks/benefits. Olivia (Margaret) ultimately storms out of the room… Interactive discussion with the audience. Scene Three: The Cardiologist

Nurse Dahlia and Mrs. White's cardiologist on the phone, played by Dr. Margaret Elizondo. Another 6 months later, after Mrs. White had a feeding tube placed, and then had 2 aspiration pneumonias; Olivia has slowly begun to understand the realities of her mother's situation. She agrees to stop the tube feedings and start hospice care. The hospice RN asks the patient's cardiologist about stopping certain medications (Lipitor and Coumadin) and deactivating the AICD. Model the Conversation: Stop Lipitor and Coumadin? – ok Lipitor, not Coumadin. Afib/stroke risk vs. Coumadin risk? AICD off also? – Difficult to stop treatment once started. Physician discomfort with end of life issues/decisions – giving up. Letting Mrs. White to starve death? Interactive discussion with the audience.



Jacquie H. Hansen
Cartoon Owl who teaches
http://www.TargetTheBest.com
Presentation Show Abstract

Concept The art of animation is a natural derivative of a growing number of aging Americans raised on a culture of popular cartoons such as Popeye and The Flintstones and now the use of animated characters has rapidly spread to younger generations who experience them in video games and apps.

Animation has become a widely acceptable educational tool. An animated fun wise owl that embodies all of lifes knowledge wearing a monocle, who speaks as a higher self (wizard), is portrayed as a professor to educate. The owl represents wisdom, the ability to see things that are hidden, a protector against harm, intuition, and intelligence. The owl could be hooting to the audience who... (is …."jingle" in different musical genres including ringtones that connect with old and young about smarter ways to experience End of Life planning. The wise owl can be depicted in monologue, or in scenes with other characters, however, the main idea that it gets across is completing advance directives early, and for people with serious illness to document their end-of-life wishes via forms like POLST.

Content would be created around the character of this animated figure along with the message indicating the "three things you need to do about the end-of-life" in English, and other languages.

Promotion and Outreach

Many seniors are newspaper readers. PSAs would be strategically placed in the health section of papers and magazines (AARP, Prevention). The owl could be reproduced and placed as a comic strip character in newspapers cartoon section." Integrating humor as a way to get the attention of readers

Public service announcements will be placed on cable and commercial television programming as well as online and radio. These announcements could run on television screens in doctors offices, hospitals and mass merchandiser stores such as Wal-Mart and Target, Walgreen's pharmacies. Posters with the owl character would be displayed at nursing homes and hospital information desks along with forms. The owl can fly onto websites with a hoot

Specially branded kiosks would be inserted at airports, bus stations, and train stations in which passengers can take a survey and access documentation prior to their trip.

Engagement

Audiences would be driven to a YouTube channel and/or Facebook page where people tell stories about an end-of-life positive or negative experience. To heighten participation, a contest could be incorporated whereby the top three most compelling stories win a prize each month. A pop-up could appear with contestants signing-up to receive forms. Prizes include appearing on a nationally televised show such as Oprah, Ellen DeGeneres, or Dr. Oz.



Laura Bolsover
The Purple Elephant Project: A Marketing Campaign Dedicated to Starting the Conversation about End-of-Life Care
PowerPoint Show Abstract

Introduction:

When I looked at the resources for this challenge I thought "Wow, all of these great tools have been created, but no one is using them and no one wants to talk about death and dying!" What hit me was – no one wants to talk about death and dying – it's the "elephant in the room". Talking about dying – just bringing it up is awkward and uncomfortable. It's something people are going to struggle with. How do you bring up these tools and websites without seeming "cold" about it? How do you do it with warmth and compassion? Talking about dying is hard and the purpose of this marketing campaign is to acknowledge that it's hard, and try to make it a little easier – provide people with an icebreaker if you will.

The" icebreaker" is the Purple Elephant.

If the topic of dying is the "elephant in the room" why not give people a tangible elephant to acknowledge that fact?

A search on elephant folklore, brought me to stories about elephants knowing the time and place of their own deaths – and planning for it.

My goal was to overcome the cultural taboos around death and dying by creating a new culture around death and dying – the culture and story of the Purple Elephant planning for its death.

By creating a universally recognizable character such as the Purple Elephant, the intent is to appeal to audiences of various ethnicities and backgrounds.

The Purple Elephant mascot/icon will be the focus of an umbrella marketing campaign which is intended to unite existing resources.

Materials will include brochures, a website, Purple Elephant stuffed animals with tags linking you to the website, etc. Advertising will include social media, print, and transit advertising.

The goal is that the "elephant in the room" of end-of-life care becomes the approachable Purple Elephant story that we talk about.



Mitsuo Tomita, M.D., Veva Arroyo, Sharp HospiceCare Business Development, Marketing; Lydia Lombardi, LCSW, Vitas Innovative Hospice; Caroline Flanders, Interfaith minister
San Diego County Coalition for Improving End-of-Life Care
"How Not to Become a Zombie"
www.sdcoalition.org
PowerPoint Show Abstract

The San Diego County Coalition for Improving End-of-Life Care has had two recent well-attended community programs entitled "How Physicians Plan to Die: Physicians Share Their Thoughts On Their Own Advance Directives." In order to stimulate the discussion regarding end-of-life planning and educate the public about what they can do, the Coalition is planning a one-day event on Saturday, Oct 12 or 19, 2013 at a location to be determined entitled "How Not to Become a Zombie" - taking advantage of the month of Halloween.

The first part of the program will consist of a panel of physicians explaining about dementia, the various types – e.g. Alzheimer's, Pick's, Lewy-body, alcohol-related, Parkinsons Disease, Traumatic Brain Injury, etc., the progression and final end-stages prior to death. The 2nd panel will consist of physicians addressing "How Physicians Plan to Die: How Physicians Plan to Address Dementia in Their Own Advance Directives" which would also include general information about Advance Directives. The final panel would consist of caregivers who would share how they took care of a loved-one with dementia until their death and how advance-care planning helped or could have helped.

There would be plenty of time for questions and answers, including questions regarding artificial nutrition and other medical interventions. AD and POLST forms would be made available free to attendees, and attendees would have the opportunity to develop and discuss their AD and/or POLST questions with trained POLST people available to provide information and help answer their questions. The San Diego Coalition has many trained and knowledgeable people to call upon. Cultural and religious and other aspects would also be discussed.

There would be refreshments consisting of such things as perhaps tomb-stone and eye-ball-shaped cookies, brain-shaped cakes, cocktail sausage fingers with catsup and pieces-of-onion fingernails, green zombie punch (with ice cream), etc. Some Coalition and other volunteers would be dressed in Halloween attire.

Publicity and work with the media would get the word out past attendees to a broad public audience as another means of encouraging discussion. This would be an annual event, learning from experience. If we get a grant, it would be used for room rental, fliers with graphics, paid publicity, food, decorations, etc. Speakers will all be local and get no reimbursement or honoraria. We will seek to collaborate with other organizations, e.g. Alzheimers Association, Parkinsons Disease Association and many others.

This event is still in development, may involve university students, hopefully publicly-recognized people as panelists and as the M.C. Probably a video (edited and posted) could be made afterwards to help further promote advance care planning.



Brian Rice, PhD
Psychologist, By Design
The Life Directive - Advance Directive Challenge
PowerPoint Show Abstract

"The Life Directive - Advance Directive Challenge" requires one person to recruit at least two other people to participate in the LDAD Challenge. The LDAD Challenge is a combination of SuperBetter and Advance Directives (one part living life better – one part dying better).

The design interface requires the person completing the Advance Directive Challenge to have the other two players complete the Life Directive Challenge (SuperBetter like) tasks in order for them to progress through completing the Advance Directive Challenge (and vice versa for the other players).

So you could have people who have already completed Advance Directives focus on the Life Directive Challenge and recruit other players.

Or individuals participating in Life Directive type challenges via SuperBetter or other similar games could add the Advance Directive Challenge – what better boost in Resilience can you have than outlining how YOUR Game is going to End!

The goal is to engage people to think about living a quality life and focusing on what is important to them. Thinking about death or at least acknowledging it exist, helps us refocus on what is important in life.

The interactive game/challenge format allows each person completing the LDAD Challenge to invite others to participate so it engages generally healthy people to consider their options and wishes regarding their Life Directive, but directs them to also complete information that can populate into complete legal documents.

Since the Life Challenge is ongoing it reminds them to revisit their Advance Directive Challenge decisions periodically (similar to a Buddy Check system for breast cancer). This ongoing revisiting of the Advance Directive Challenge (via active engagement in the Life Directive Challenge) can be used to supports patient awareness and understanding of POLST by acknowledging various challenges along the life-death continuum.

The LDAD Challenge can be played by friends, family members, parents, adult children, children and their grandparents (not everyone would be open to this option – but what a great opportunity to teach children about living a meaningful life).

The focus on the Life Directive Challenge can diminish some of the cultural taboos about talking about dying.

This LDAD Challenge could be incorporated into existing games like SuperBetter and Lift.

Where does this idea of the LDAD Challenge come from? I work as a Hospice Psychologist and receive daily emails indicating when a patient passes. That reminder "that life ends" is a great reminder to focus on the Life Directive Challenges that are TRULY IMPORTANT. When I started at the Hospice, I asked if all the staff had Advanced Directive or had completed the Five Wishes document. I was surprised when the Executive Director answered "NO". I just recently saw Jane McGonigal's video presentation from the Health Experience Design Conference and learned about SuperBetter. So the idea is linking two experiences. No one wants to talk about end of life, but if changing the context to Life Directive (which people do want to talk about) maybe we can engage a few more people in the Advance Directive Challenge!



Abigail Cajudo
Catalyzing Conversation & Change through the Power of Video
PowerPoint

Terry Albanese
Respecting Options of Care (ROC)
Palette of Faith in Action
http://paletteoffaith.org/
PowerPoint Show Abstract

Respecting Options of Care (ROC) is a community-wide, inter-professional collaborative whose mission is to educate community members about health care choices and empower them to communicate their wishes. ROC's vision is to improve the quality of health care through increased rates of Advance Care Planning (ACP) and documented Advance Directives (ADs) that clearly express patients' informed personal choices and are honored by healthcare agents and providers across all health care settings. This will be achieved through our unique long term collaboration among our community's healthcare, faith, social, and legal institutions (Appendix A provides a list of ROC's Advisory Committee members).

ROC is planning a community-based approach to increase ACP and its documentation to improve end-of-life care. In fulfilling its mission ROC will provide community members with information about healthcare options and tools to engage their families and healthcare providers in conversations about how they want to live if they cannot speak for themselves. The objectives of these ACP discussions are for participants to 1) reflect on their beliefs, values and prior experiences to guide them in stating their basic wishes in the event of a devastating irreversible neurologic injury, and 2) designate a surrogate who understands and agrees to honor those wishes.

Our challenge is to motivate and to activate community members to attend informational, discussion sessions about healthcare decision making and advance care planning. To that end, our faith community leaders (a Palette of Faith) will invite members of their congregations and the larger community to attend these sessions. In crisis situations, such as when people find themselves having to make healthcare decisions for a loved (decisions for which they are unprepared) they often call upon their minister, priest, rabbi, imam…. for moral and spiritual guidance. Thus, religious leaders can have an important role in educating and motivating their congregations to discuss health care wishes and to complete advance directives.

The sessions will be scheduled and staffed by ROC members and held in various churches, community centers and libraries in Summit County. Each session will be conducted following a standardized agenda and protocol which will be reviewed and finalized at the next Palette of Faith annual conference in the autumn of 2013 (see Appendix B for a description of a Palette of Faith). Faith community leaders will participate in a one month media blitz during which they will send the same messages via their outdoor signage, vestibule and community posters, bulletins, newsletters, websites, e-mails, and other web communications. The messages will be communicated using both written words and clip art that are intended to be thought provoking and compelling, such that people will be interested and motivated to attend a session and learn more.

As a collaborative of healthcare and social service providers, religious leaders, educators, attorneys and a probate court judge, ROC is uniquely suited to work as a team to engage citizens and empower them to document healthcare choices based on their personal beliefs and values and in the context of their life and health.



Eva Kaniasty
Red Pill UX, LLC
Nine Lives
http://www.redpillux.com
Video Walk Through
PDF Prototype Show Abstract

Nine lives is a responsive application designed to encourage users to engage in conversation about decisions related to illness and death. Although the prototype is presented in tablet format for portability and easy engagement at home as well as in a hospital setting, a responsive and accessible implementation should be possible within a small design effort .

The name of the application is a nod to the common saying that cats possess nine lives. It is an attempt to introduce levity and reduce user stress without causing offense. Studies have shown that pets can be a force for stress relief, while a recent study suggested that those who viewed pictures of baby animals online were better at focusing on a subsequent task. Within Nine Lives, the cat motif is represented by the Dr. Katz avatar, who appears both in the guided conversations, as well as in the 'Cat soap opera' comic strip, a soap opera spoof designed to serve both as a marketing piece, as well as a (hopefully) welcome distraction from the seriousness of the conversations themselves.

The Nine Lives prototype presents several guided conversations written in clear and simple language and designed to include family members and other caregivers. The conversational approach reduces the stress inherent in these conversations, while allowing for adaptation for lower literacy and multi-lingual populations. Legal language and forms are introduced only after the user has engaged with the underlying issues, and has had a chance to have an honest conversation about some of the hard decisions about end of life planning.

In addition to conversations about medical decision-making and end of life care, the app includes a conversation about organ donation. Organ donation is a topic that is likely to be familiar to many users; many may already have an organ donor sticker on their driver's license. This conversation can therefore serve as a 'foot in the door' toward exploring the other conversations. The overall design is meant to be modular and extensible, so that additional conversations can be added as needed.

While the bulk of the app focuses on conversations, the app also utilizes existing resources such as FAQs and videos to educate users about life-saving treatment, advance directives and POLST at the critical moment when they are ready to make their decisions legal. All app progress is saved, with the option to email a conversation, and/or to be reminded to return to the application to take further action.



Heidi Smith
HealthInsight
ePOLST Dramatization
http://Leaving-well.org
Video Show Abstract

The POLST paradigm is a huge improvement in documentation of patients' preferences for end-of-life care. However, to guarantee that patients' end-of-life care preferences are ultimately respected, it is important that the documented preferences are accessible in a timely and appropriate manner by the relevant healthcare providers (e.g., Emergency Medical Services (EMS) providers, Emergency Department (ED) providers, etc.). Most states who have adopted the POLST paradigm use paper-based POLST forms and patients' end-of-life care preferences may not always be accessible at the time of need. Disheartened by stories of patients who have been hospitalized against their express wishes because the POLST form was not with them during a health episode, we wanted a better way to record end-of- life care preferences. With funding from the Office of the National Coordinator, Department of Health and Human Services (ONC), Collaborative Agreement Grant #90BC00006, the IC3 Utah Beacon developed a web-based, electronic registry, and access point for POLST forms. Beacon providers and administrative team members are actively training EMS workers and physicians about this tool, which has been well received so far. However, we recognize that consumer support and demand is essential to drive adoption of this system by healthcare facilities and providers quickly and uniformly.

To better disseminate the message to the public on the advantages of using the ePOLST registry and the POLST paradigm, we created a dramatization of a typical EMS call to a home where an elderly mother has been found non-responsive on the floor by her daughter. When queried by the paramedic, the distraught daughter has no idea where the POLST form is located but she knows her mother has requested a Do Not Resuscitate (DNR) order. Per EMS protocol, until the documentation can be located, full resuscitation efforts must be applied. Fortunately, the POLST form is available to the EMS team via the web-based ePOLST registry so that the mother's final wishes are honored, ensuring that the mother's preferences were honored at the end of her life.

This video has been seen by a few people (including our project officers at the ONC) and has received rave reviews. Our hope is that this video will go viral and be shared by thousands of people. Our goal is to encourage patients, families, and providers to engage in conversations that help elicit patients' end-of-life care preferences. We hope that these conversations would ultimately lead to documenting these preferences using processes (e.g., ePOLST registry) that assure real-time access to the information at the time of need. Patients who are empowered to make informed decisions will be able to receive the treatment they want and experience the quality of life that they wish for until the end of their life.



Bett Martinez; Elijah Martinez, BS physics; Ilana Trumbull – M.A. Comparative Religion; Joachim Seckel, M.S. Sociology; Helen Greenspan, Hospice Nurse; Janis Eames – ICU Nurse
Possible Society of California
TOUT it Out!
http://www.possiblesociety.org
PowerPoint Show Abstract

In recent conference presentations I focused on what I DO want at end-of-life (positive palliative care) before taking up what I don't want. As a 71 year old, I feel my contemporaries want to be part of the discussion, but making a beginning is hard. Advanced Directive & POLST care planning guidance that enables us to accurately capture our preferences for some unknown future time can be puzzling, even for the motivated, and it's an ongoing process. For those yet to be mobilized into action, the dilemmas add to the difficulties so tools offered by CHCF would be welcome. Question is: how to get word out and keep pushing it out, because it's a process?

Just as journalist Lisa Krieger's recently published personal and shared stories re: end-of-life quandaries and victories were moving to many, the Internet can be used as a vehicle for coming together to inform, collaborate, and catalyze a movement.

Capitalizing on the social networking and media boom, I propose integrating video and web technology to engage, educate, and activate elders and their loved ones. Through blogging (e.g. BlogHer, my friend Jory des Jardin's company), Facebook, Twitter, etc., it's possible to share stories, get guidance.

Engaging people will create a discourse on the topic. Although middle aged and older people may feel daunted by the perception that technology is too complicated, simplified tools can be presented in a familiar manner.

People of all ages are more likely to watch videos these days than read about something, especially due to the pure level of engagement a video brings to the table. It is also easier to convey emotions and understand a situation when watched through a video because of visual support.

Recently, Bay Area News Group began working with a site called TOUT, which offers easy to make 15 second videos. Interspersing written information with short spots can certainly lighten up ponderous family discussions. On Dr. Oz's TOUT page there was a very entertaining spot by Star Trek's William Shatner, in which he proposed the idea of "not dying…[since] it's never been done before." Realistic or not, he's cheerful, and it's certainly a provocative thought. Video sharing platforms engage users to share experiences with one another over time, so a moderator could add TOUT video responses regarding POLST/AD, made by the community, to create an ongoing intergenerational dialogue.

Let's combine information with inspiration, utilizing the best of California –Hollywood and Silicon Valley –bringing in diverse celebrity elders to communicate with people who are non-activated for various reasons through Public Service-type announcements on TV, at the movies, in places of worship - wherever families and loved ones congregate. Their communiques would be short, motivational personal stories that point audiences to phones and websites with tools for completing POLST and Advanced Directives. This would not be an Awareness Day, but a yearlong or multi-year campaign.



Ananya Mukherjee
God Finder
http://ananya-mukherjee.com/
http://godfinder.herokuapp.com/ Show Abstract

There are fewer things more morbid and unpleasant than the combination of dying and managing logistics. It must be done, sure. But is that the only entry point? My concept targets young, non-activated users with a completely different approach. In a humorous invitation to find God, the website tells you what to expect when you meet him. And then reminds you to set the expectations of those you leave behind. Using images and motifs from popular culture, the website undoes much of the heaviness of the subject matter but leads users to explore these things on their own and have a conversation about it- if by nothing else, then by sharing this simple fun site.



Mari-Patricia Boughner
RESPECT
PowerPoint Show Abstract

Poetry has a way of bypassing the logical, analytical mind and accessing the emotional being. My poem, RESPECT, offering the vantage point of a person at end of life, addresses the importance of respect for one's EOL wishes and deep appreciation at having them honored. It is intended to remove caregivers' often self- imposed, and frequently culturally sanctioned, pressures to 'do everything'. RESPECT champions supportive 'be there' behavior. It offers before-the-fact validation for palliative care in the context of clear directives. Intended as a tool for those who must address Advance Directives and POLST with patients/families/clients/ members of faith congregations, RESPECT slips beneath surface rationality and talks the language of emotion and love in times of severe stress. The poem can stand alone as a printed document or be professionally narrated (male/female voices, different cultural intonations, varied age suggestions – from a sonorous Tommy Lee Jones voice to an RJ Cool rap sound! – significantly more compelling than my personal rendition) for audio/audio-visual use as circumstances warrant.

At its most basic, including the poem in handouts of Advance Directives/POLST packages offers a more psychologically broad based way of thinking through the materials than is traditionally available. Mari-Pat Boughner is a published poet (pen name Mary Boyle) who was, for many years, a hospice volunteer.



Dawn Gross, MD, PhD, Gordon Clark, Mary Goulart
Coda Alliance
R.I.P. Plan
http://www.codaalliance.org/ Show Abstract

Relief lies in knowing the answers to the questions we never ask.

Research shows that when surrogate caregivers are in the position of making decisions, the single most beneficial intervention supporting their role is having had prior conversations with the patient1.

R.I.P. plan (pronounced rip plan) will be a new app for smartphones designed to easily engage people of all ages and backgrounds in end-of-life conversations.

Why an app?

Over 80% of Americans between the ages of 18-64 own cell phones regardless of race, gender, education or income2. Smartphones account for over half of these devices3. More than half the cell phone owners use the internet on their mobile devices, and this number is only on the rise2. Importantly, people between the ages of 18-49 have the highest smartphone use. This is precisely the audience we seek to target in this marketing campaign.

R.I.P. plan directly connects people to the highly effective and user-friendly GoWish game4. The GoWish cards catalyze conversation between friends, families, doctors, patients, colleagues and even total strangers. By sorting cards with simple phrases highlighting possible end-of-life care preferences, these cards engage people to share stories that reflect their life priorities and values.

This captivating and playful approach is a powerful tool to change the paradigm around what is traditionally considered a taboo conversation into one that enriches and empowers our relationships. Grandparents don't need to own a smartphone because their kids, grandkids, physicians and hairdressers already do. The ability to start one of the most important conversations a person can have will, quite literally, be right at our fingertips. So why will people click it?

Meet Gordon Clark.

Gifted animator of the popular Virgin America safety announcement5, Gordon's art is able to marry the serious with the humorous. By animating images inspired by the statements on each of the GoWish cards, we create a universally compelling platform for people to engage and re-engage in the conversation with joy and delight while accomplishing our mission.

At the conclusion of the game, players can easily share their R.I.P plan via social media links, such as Twitter and Facebook, to keep the conversation alive and growing.

The website, myRIPplan.org, will also connect players to chat rooms where they can discuss their R.I.P. plans. Options for embellishing R.I.P. plans as initially created with the GoWish cards will be possible by directly linking a variety of resources which support further exploration of topics related to advanced care planning including but not limited to: POLST forms, advance care directives; blogs, such as Geripal and Pallimed; and professional websites including AAHPM, CAPC, SevenPonds and the Coda Alliance.

myRIPplan.org also reinforces the notion that the phrase "Rest in Peace" is a well-considered wish that results in a lasting peace for every member of the family.

The only way to lose the game is not to play.

Click it. Play it. Share it.

What's your R.I.P. plan?

Find the app at myRIPplan.org and join the conversation today.



Jennifer Brokaw, MD; Lael Duncan, MD; Wayne Pan MD
Good Medicine
Talk To Me: Physicians talk about
PowerPoint Show Abstract

Concept: We propose a grass-roots movement that starts with physicians. Through a video called "Talk With Me" featuring physicians from a variety of specialties relating PERSONAL stories of making tough decisions for patients or their OWN experiences with friends OR family who were at a critical juncture in their health. This will be an emotional "hook" that will grab the attention of physicians and patients alike. The video will be embedded in a website called TalkToMe.org(?) which will have information and tools for patients and providers about how to start the conversation and create a medically meaningful directive. The next step is to create a path for physicians and organizations to follow so that they may deliver on the promise of more patient-centered care. Talk To Me will provide both solutions.

Resources, including existing websites and training programs will be displayed on the website. Doctors who have participated in this program could wear a TalkToMe pin on their lapel for example, as a symbol of their commitment to opening the conversation.

Background: We know only 30% of Americans have created a Directive, but what few realize is that even fewer (10%)people have communicated its contents to their physician. There have been many websites, videos and state and local initiatives to address this problem. Most efforts have focused on getting laypeople to "have the conversation", but it has proven difficult to motivate people to actually do it. A little discussed obstacle are physicians themselves who are often reluctant to bring up difficult questions about end of life care, values or spiritual beliefs. There are many reasons for this including lack of time time, low reimbursement and lack of training for these discussions. Interestingly, physician's own spiritual, emotional and philosophical landscapes are hardly acknowledged as a contributor to the communication divide that separates physicians, patients and families at the most critical moments.

Target audience: Is the average lay person who has not created a Directive, or has not communicated about their Directive to their health care proxy or physician. Equally important will be the physician and hospital community who will be inspired to join the movement. From the patient side, we believe this will be effective because it harnesses the respect that the general population has for the medical profession, while lowering the barriers for communication. Physicians from multiple racial and ethnic backgrounds will be recruited to participate in multiple languages.

Quote from a patient dying of prostate cancer:

"Not every patient can be saved, but his illness can be eased by the way that the doctor responds to him. In learning to talk to his patients, the doctor may talk himself back into loving his work. He has little to lose and everything to gain by letting the sick man into his heart. If he does, they can share--as few others can--the wonder, terror, and exultation of being on the edge of being"



Tonya Murphy-Toft; Kelsey Hull
Passare.com
End-of-Life Care Challenge
Passare.com
Presentation

Azalea Kim
myProxy Inc.
myProxy - Your Voice in Your Care.
Video
User Test Findings Show Abstract

Our Story

We are three friends who are on a mission to give patients a voice in their end-of-life care and to ensure that patients' wishes are heard and honored during crucial moments of care. We created myProxy, a two-sided web-based platform where users can digitally record, share, and update their healthcare proxy and living will, and make these forms available to providers where and when they're needed.

Our Goal

We aim to optimize adoption of our platform to complete these two forms by creating a user experience that feels simple, easy to use, accessible, and relatable.

Our Target Audience

While older users (ages 60+) would most benefit from advanced care planning, our platform appeals also to younger age groups. For this group, we motivate movement from contemplation to action by demonstrating the simplicity and ease of use of our platform. Our platform is also accessible to younger users, such as adult children who can motivate their older loved ones towards action. The accessibility and relatability of our user experience can also motivate these adult children users from pre-contemplation towards contemplation.

Our Approach to Design

myProxy creates an ecosystem around the user to support him/her through what can feel like a daunting and confusing challenge. Some key design and functional choices include: • Using basic language, graphics, and a "humanizing" logo: We target a Flesch-Kincaid level ≤ grade 7. By simplifying medical terminology and removing jargon, we address varying levels of health literacy. To accommodate those who are visually impaired, we use infographics when possible and minimize text. Our logo is a cartoon version of our co-founders – putting faces to our company. The color pallete and music sets a calming, comfortable tone for thinking about an otherwise anxiety-provoking issue. In the future, our product will be available in Spanish and other commonly used languages to better meet user needs. • Breaking the process down into stages, with help "on call:" We outline 5 clear steps for users. A progress bar at the bottom of the page tells them how far along they've come and how much is left to go. Users also have clear milestones at which they can pause if they have questions. We encourage them to reach out to loved ones, confidants, or myProxy's helpline. We also provide curated links to relevant, existing online resources. Reminder notifications are sent to alert users of an incomplete form. • Appealing to user emotions: Studies suggest that the most salient emotion is the potential burden of end of life care on one's family. Patients tend toward overconfidence that their proxy would implicitly know their wishes. We position the living will as a tool to empower your proxy. Users are encouraged to digitally share their current and updated documents with their proxy, loved ones, and primary care physician via email. Sharing promotes a feeling of connectedness with others and can motivate continued discussion and expression of one's wishes.



Melissa Cliver, Allison Tran, Irish Malig
Will Work for Change
The Wish Papers
PowerPoint Show Abstract

There are many tools to help us document preferences when it comes to planning for end of life but many of us are still not communicating our feelings to loved ones and health care providers in a way that enables them to make care decisions based on our wishes. Our team: Will Work for Change, believes the problem lies in both access to related documents and awareness or knowledge of the information needed to act on filling out the documents.

Our team of designers has a deep understanding of health care service design from years of research with patients, physicians, and staff at Memorial Sloan Kettering Strategic Planning and Innovation lab, University of Pittsburgh Medical Center, and The Mayo Clinic Center for Innovation. Our solution has two components.

The first is to leverage moments of document impact that already exist. We propose integrating end of life documents (POLST and Advance Directives) by enabling access through "document touchpoints" currently present in every person's life. These moments are times when individuals are required to fill out official documents. There are many of these moments. Filling out a marriage certificate, certifying vaccinations, filling out a birth certificate, even applying for a driver's license—these are all moments when it makes sense to think about self, the future, and those who love you.

The second, is to introduce end-of-life documents with a new, more friendly and easy-to-understand vernacular. Using marketing and social media, we propose familiarizing these documents under the term "Wish Papers." As part of this campaign, we would incorporate clarification of terms within the documents that many people find confusing—terms such as "intubation" or "power of attorney."

The touchpoints of our concept include:

Reminder Day: Wish Day – November 1st, The Day of the Dead. Tying the celebration of life to the preparation for personal closure.

Offering Wish Papers at life stages that require filling out official documents.

Local Art Events with interactive storytelling recording booths. Along with assistance filling out the Wish Papers, individuals will record their wishes for things they would like to accomplish or experience in their lives. The recordings would be archived for use in PSAs promoting the Wish Papers. As an incentive to participate, one recorded wish will be fulfilled.

Our process stems from a service design journey framework. We use this framework to integrate observations and execute on ideation around touchpoints in each stage of the journey:

How might we facilitate:

Awareness – Intrigue– Engagement – Use– Sharing



Dr. Francois Gregoire; Dr. Simran Malhotra
Medstar Health
It's Not Too Late: Your life. Your decision.
Video
PowerPoint Show Abstract

We propose making a short animated photo message in the perspective of a person who can no longer speak for him or herself. The narration represents his inner thoughts and struggles related to his current end of life situation. The idea is to give the viewer a chance to envision the possible consequences of living without advance directives.

The goal is to provide awareness to the audience that the time to write advance directives is now or possibly relinquish their autonomy. This video will provide an eye opener for those who do not have advance directives and will hopefully encourage them to plan and act on writing them.

The motivation behind this project stems from daily struggles in the ICU setting dealing with unclear end of life directives from patients and families. This leads to great distress for not only the patient and their family but also the entire healthcare system. The photography symbolizes the setting and everyday decisions that are faced in modern ICUs. Although ICU is where we have personally encountered these issues, this video is applicable to other settings as well such as nursing homes or hospital wards.



Meral Dabcovich and Earl Quijada
Visper
Communicate and Clarify
http://www.visper.com
Presentation Show Abstract

The problem: Advance directives and POLST forms are not being filled out. Some limiting factors are worry and fear of talking about dying.

Our solution: We designed a six sentence story that allies with the reader's inherent motive for clarity. Reaching clarity includes advance directives and/or POLST. Storytelling is easy and comfortable. It connects and conveys values. Furthermore, narrative leads to presence rather than an unknown future. An unknown future can be frightening and lead to avoidance behaviors. The Rubik we present illustrates the process of moving from confusion to clarity and diminishes worry. This moving process is abstract to the person until it is clarified by the healthcare provider. In return, the person is abstract to the healthcare provider until clarified by the story.

The purpose of advance directives and/or POLST forms is to capture personal preference, a reward that is lost without context. Storytelling captures value, where we can mine for goals and preferences. In our design, we empathize with confusion. We begin there where the patient begins, purposefully, to validate. The design empathizes with the reader so the reader recognizes they are not alone in their complicated starting place.

The story is illustrative of a process. The final image of our Rubik remains clear enough to inspire the ah-ha moment, yet also abstract by design. Abstraction allows for the necessary reprocessing we all must go through when telling our story.

Join us as we take you through this storytelling experience. Try it for yourself.



Clare Tobin Lence, Ryan Brown
HealthInsight and the Utah Leaving Well Coalition
The "Leaving Well" Mobile Application: A companion to Leaving-Well.org
App on iTunes App Store
App on Google Play Show Abstract

Mobile technology, and smart phones in particular, have become ubiquitous in American society. In 2012, 49.4% of Americans used smartphones; that number is expected to reach 57% by the end of 2013. The rates are even higher among those aged 18-29. Four out of five smart phone users check their phones within 15 minutes of waking. Mobile is the main method of internet access for low socio-economic status populations, and cell phones have the highest rate of adoption among this group. Reaching broad groups of people with public health initiatives necessitates meeting them where they are—which, today, is on mobile technology devices.

The Leaving Well application, a companion to Leaving-Well.org, was developed to reach those people who are considering the importance of sharing their end-of-life wishes but do not know where to begin. The app is straightforward, with a clean, simple design. It is intuitive to use even for those who do not frequently use apps. For those more familiar, the app has a pleasing aesthetic and a slightly game-like feel. It easily engages the user and shares key, but brief, messages. Each bit of information has a link to Leaving-Well.org for more information, which is optimized for use on mobile devices. The site itself contains printable versions of Utah's legal Advance Directive form and a sample of the POLST form. Utah has a growing ePOLST system that has been developed under HealthInsight's Beacon Community Program, along with the Leaving Well website and app.

The Leaving Well app functions as an initial engagement tool and a starting point that identifies the main things to consider when the user, or their loved one, is ready to think about end-of-life issues. It provides a framework that gently pushes the user to learn more about starting the conversation, documenting their preferences, and other important tasks that should be accomplished. The app can be used as an on-going checklist for these tasks and even provides a place for user-entered notes.

The Leaving Well site and app were developed with extensive consumer testing. Two consumer and one provider focus group were conducted, followed by two rounds of consumer usability testing. Feedback from the testing described the content as honest, understandable, easily digestible, thought provoking, and easy to navigate. The site and app provide unique content, such as digital estate planning, which covers such concerns as email accounts, online banking passwords, and digital music files. Making this sort of information not only available but also easily accessible to the consumer, wherever they are, is the goal of the Leaving Well site and app.

A search of the Apple and Google app stores shows that there are no applications focused on end-of-life issues, despite the fact that there are thousands of medical apps. Clearly, Leaving Well fills a gap. The Leaving Well app reaches out to a broad population and makes taking action on end-of-life issues easy—or at least as easy as it can be—by bringing everything that people need right to their pocket.



Adam Gatham
LifeDocs.
PowerPoint Show Abstract

The US healthcare industry is making strides to make its processes more efficient and effective. Despite all of its technological advances the US remains far behind other industrial countries. POLST and Advance Directives will need to keep up with the constantly advancing technology otherwise the paper form will become less relevant to the tech savey society. The design solution is to develop a web based application, which an end of life patient can create an account and fill out all the necessary POLST and Advance Directive questions and electronically sign. The patient can share their account with loves ones, caregivers, and their physician to review, download (as a merged pdf), or transfer to other local medical offices in coming months or years. This design is on the cutting edge of revolutionize the healthcare industry to allow the patient to be in control of their care and not their physician. The application can be a stand-alone system, integrated with other medical offices via HL7, or imbedded in EMR/EHR systems. The application offers electronic signatures, account sharing, multiple document creations, transmitting documents, downloading, data security, support tips, frequently asked questions, life experience videos. With an online presence, internet advertising can be easy to target the general age range of end of life individuals, ie Facebook. Facebook's most popular and growing age group, in terms of users is the 45+ age group. With the average user spending about 10 minutes per day, basic advertisements for this web based system could result in high conversations rather than expensive tv/radio campaigns. I would like to introduce you to LifeDocs.



Tina Tai; Sophia Yeung; Samuel Sung
Chinese American Coalition for Compassionate Care
CACCC Multi-pronged Minority mHealth Solution
Chinese American Coalition for Compassionate Care
PowerPoint Show Abstract

Advance care planning (ACP) is an ongoing process, not a single event. Clients continue to learn and get update about End of Life (EOL) options, think and rethink about values and preferences, communicate with their providers and loved ones, document their wishes and leave a guide for others when they cannot speak for themselves, or in cases of sudden illness or accidents. ACP can improve end of life care, quality of life, satisfaction of patient and family, enhance learning and empowerment, and avoid unnecessary misunderstandings, sufferings, confusion, conflicts and burdens.

Problems and barriers with advance care planning are multi-faceted, factors including system, cultural, personal barriers, confusions and myths. Therefore, multi-pronged strategies are necessary for effective outreach, such as targeting primary clients who are completing the ACP and secondary clients who may influence or assist the process. Research shows that combination of passive and active intervention approaches is the most effective. During the intervention, special considerations of different needs of various populations are also necessary.

In this pilot project, we proposed a multi-pronged minority ACP mobile health (mHealth) solution. mHealth has been proven to be effective in the field of health behavior change. This project has selected one of the fastest growing immigration and mobile usage populations – Chinese-American in California - they are more likely to have limited English proficiency, has the lowest rates of hospice use of any group, and often time has limited access to national and institutional culturally and linguistically appropriate resources.

Through ACP mHealth mobile application, nationwide primary and secondary Chinese-American clients can easily access CACCC existing services and documents such as our culturally, linguistically and literacy-level appropriate EOL educational materials, video, glossary, bilingual Advance Directive (AD) form and POLST guide previously translated by CACCC, access our bilingual support line, get information or register onsite AD workshops, link to our ACP social and support networks, and get in-language email updates. The friendly mobile interface design (easy icon) will increase the use among low-literacy and senior populations. Interactive sessions and media will promote effective learning and increase accessibility of EOL care planning and services. ACP mHealth also offers an innovative step-by-step (via. digital media or voice navigation) interactive approach for clients to complete the forms at their own pace with support. Client's digital signature will be captured at completion. The application allows clients to store the completed or updated form at their smart device for easy access, present to providers or share by email if necessary. It also increases the ease of AD and POLST forms distribution and provides a cost-effective advance care planning solution, supplementing interpersonal outreach and intervention. We speculate that ACP mHealth will increase the AD completion rate with more informed decision making.

Future possibilities of ACP mHealth application are huge. It may lead to future research projects, online/mobile EOL continued medical education (CME) development, valuable partnership opportunities such as partnering with other institutes and community based organizations to develop other ACP mHealth language versions as well as culturally appropriate regional EOL mobile resource guides.



Bill Cullifer
End of Life Matters
http://endoflifematters.org
PowerPoint Show Abstract

Design Brief
According to the National Institute on Aging at the end of life helping with planning, comfort and care hopes to make the unfamiliar territory of death slightly more comfortable for everyone involved. Based on extensive research conducted by the National Institute on Aging, part of the National Institutes of Health and suggestions from practitioners with expertise in helping individuals and families through this difficult time, we submit the EndofLifeMatters.org website resource and social media marketing strategy for fostering the discussion about why end of life matters. Our Design Challenge submission includes:

  • A well thought out domain naming convention (http://EndofLifeMatters.org) that in addition to being descriptive for the end of life, the inclusion of the word "matters" has a dual meaning for both why end of life matters and the need for taking care of one's own matters
  • A fully functional website and logo that's visually pleasing and compelling
  • A fully functional easy to read with plenty of white space and useable navigation that meets industry and Web accessibility standards
  • A simple process of following "steps 1,2,3,4" for understanding the process for completing Advance Directives and POLST
  • A blog with daily "end of life news" and "personal stories" ( see story from Rep. Earl Blumenauer U.S. Representative from Oregon with his own end of life story at http://endoflifematters.org/?p=272 )
  • A strong call for action for including "share your story" and join the discussion
  • A marketing campaign entitled: "Ask Me Why End of Life Matters"
  • A responsive Web design specifically designed for mobile phones, desktops and tablets ( more than just an app and it doesn't require a download)
  • A social media component that links to Facebook, Twitter, LinkedIn (requires activation)
Architecture
  • Home
  • Advance Planning
  • Comfort and Care
  • Memorial Pages
  • Share Your Story & Raise Awareness
  • Join the Discussion
Advance Planning
  • Why End of Life Matters
  • Understanding Health Care Decisions
  • Planning for End-of-Life Care Decisions
  • Getting Started with Advanced Directives
  • Physician Orders for Life-Sustaining Treatment (POLST)
Comfort and Care
  • Providing Comfort at the End of Life
  • Finding Care At the End of Life
  • What Happens When Someone Dies
  • Dementia At the End of Life
  • Things to Do After Someone Dies
  • Getting Help For Your Grief
  • Help With Other Matters
Share Your Story/Join Discussion
  • Your Stories in Your Own Words
  • End of Life News
  • Blog



Lara Raquel Clary-Lantis; Harrison Lantis
Allegiance Health, Jackson, MI (employer, on leave) and University of Michigan (currently geriatric fellow)
Down With ACP…Still Rockin' the Vote
PowerPoint Show Abstract

My plan is to link advance care planning with registering to vote. Through the state of Michigan, registering to vote is done primarily though the Secretary of State at the Department of Motor Vehicles when a resident turns 18 years old.

Everyone looks forward to their birthdays and, as we all get older, most of us are thankful to have another healthy year. But no one looks forward to birthdays more than young people. Kids are enthusiastic about all birthdays, especially birthday milestones. Although we cannot remember our first birthday, other milestone birthdays are when we turn double digits, become a teenager, become old enough to drive and then when we are considered legal adults at the age of 18. Up until this point, our parents are responsible for us.

At the age of 18, one can register to vote. This is a privilege that allows us the opportunity to make choices and become part of the decision making process in our democratic society. It makes perfect sense to associate this with advance care planning. While we all hope we will always be able to speak for ourselves, it is important to be able to choose who we would want to express our choices if we could not. You need to pick someone to honor your health care decisions. Picking our durable power of attorney for health care is the most important step in advance care planning for all people, young, old, well, chronically ill. The next step would be ensuring we communicate our goals of care with our loved ones, particularly the DPOA-HC.

When one becomes 16 and gets their driver's license, they are asked if they would like to become an organ donor. Since motor vehicle accidents are the most common cause of death in young adults, it makes perfect sense to give them the opportunity to participate in organ donation when they obtain their driver's license. Then two years later, when they receive their graduated license, they can register to vote and complete basic advance care planning including naming their DPOA(s) and going so far as to complete a POST(POLST). It is time to start rockin' the vote again!



Carlos A. Gutierrez; Avalon Yangchen Hu
Midst: Leave the Life you Imagined
Midst Prototype Video
Midst - Social Amplification Image Show Abstract

End of life decisions are usually shared conversations amongst the people we love. Avoiding the uncomfortable feelings or reality of this topic leaves our loved ones with the weight of such decisions in moments of crisis. By shifting the conversation from the end of life to the midst of life, the tone becomes more casual and approachable to reach a broader audience.

Midst is a private social space where loved ones can express, listen and share each other's end-of-life wishes in the midst of life. The responsive website provides a flexible platform aligning with the natural evolution of these personal choices with those who will be by your side. As end of life wishes are selected, users provide context for their decisions eliminating ambiguity and reducing the impact on loved ones when the time to leave the life you imaged is realized.



Timothy G. Ihrig, MD, MA; John Williams; Kyle Savage
Ihrig MD & Associates
Palliative Care Driving End of Life Preparation
www.ihrigmd.com
Video about the Palliative Care program at Trinity Regional
Bundle of POLST Implementation documents
PowerPoint



Yosef Shuman; Jeanette Leigh; Mark Whiting; Ashwin Gopi; Bosko Samardzic
Addison, Carnegie Mellon University, Polytechnic Institute of New York University, GREENPEAK c4
Value in Passing: Ensuring End of Life Care
PowerPoint Show Abstract

Lack of EOLC plans leads to prolonged pain for patients, undue emotional burden for their families and substantial costs to both healthcare providers and society. We aim to sustainably increase the number of people aware of, and communicating their preferences for, EOLC in a timely fashion.

Methodology

As a small group of academics and design professionals, we used a range of integrated design approaches, including service design thinking, to consider stakeholder's incentives, pains, needs, and desires relevant to the issues of EOLC.

Researching EOLC related literature allowed us to better understand the issues and discover similarities of interest that could potentially lead to desirable outcomes for every stakeholder. Having identified a viable opportunity, we designed a service offering that provides clear incentives for both insurance providers and their customers to increase awareness and activation of EOLC plans. Lastly we collected supporting statistics and produced a visual scenario to help communicate our idea.

Proposed Solution

We propose a plan offered by insurance companies called Value in Passing. This plan increases awareness and completion of EOLC plans by motivating insurance customers through a financial incentive program – anyone who communicates their wishes, regardless of what their decisions are, will have their monthly premiums reduced. This is mutually beneficial because customers with EOLC plans often accrue much lower end-of-life health costs – hence customers save every month and insurance companies save more overall. Service Offering Details

Insurance companies often become aware of major life events such as childbirth, car accidents, medical developments, and marriage. At these times Value in Passing customers are reminded to update their plans if their EOLC wishes evolve. Value In Passing invites current customers to introduce EOLC plans to their loved ones. Insurance companies with Value in Passing are motivated to address another common issue – ensuring healthcare providers are aware of, and act according to, their clients' EOLC plans. Additional Values for Minorities Medicaid and Insurance Providers currently cater to minorities in America by bridging cultural and language gaps
. The Patient Protection and Affordable Care Act will soon have everyone in the USA covered by health insurance. Value in Passing uses this infrastructure to engage underserved minorities, driving awareness and activation of EOLC plans.

Conclusions

With Value in Passing, each stakeholder group benefits. Patients have reduced monthly health insurance premiums, legally respected EOLC plans in place, and are comforted in knowing their family will be protected from tough decisions and financial burden resulting from unwanted care. Healthcare providers can better allocate their resources, allowing them to focus care on curable patients. And finally, insurers save money by promoting EOLC plans, thus reducing the demand for expensive end-of-life hospital care that a majority of their customers don't actually want, while also aiding in keeping their customer's EOLC plans up-to-date and ensuring that they are appropriately used and respected when needed.



P "Lee" Erickson
MIME Disease: A silent threat
www.mercyfolsom.org Show Abstract

The lack of clear, effective communication regarding Advance Directives and POLST forms is a well documented problem. I have a number of ideas for how conversations might be better facilitated. This proposal will focus on one clear shift of paradigm, which has the potential to transform the experience of End of Life Care. This proposal for is based on the research presented in Switch: How to Change Things When Change Is Hard, the sources mentioned in the select bibliography, and my own anecdotal experience. Switch designates three key elements for creating change.

  1. Clear direction for our rational side.
  2. Motivation of our emotional side.
  3. Create an environment conducive to the change desired.
I propose that each of these elements be addressed for two specific groups: for BOTH those who directly provide and receive healthcare. Each group is requires engagement for combatting what I have designated "MIME Disease". I believe that conversation about this tragic condition is more likely to spread (and promote action) if it is presented as a disease or condition. My research suggests this will prove more effective than trying to avoid a situation which arises in which someone is unconscious and it is unclear what their beliefs and wishes are. Reasons for presenting as MIME Disease:
  • Clear concise term
  • A disease which may be easily prevented
  • Regular check up/review needed (may coincide with infrequent occasion which serves as a reminder: e.g. trip to DMV, annual check up, etc.
  • Understanding a silent comorbidity may serve to raise awareness of healthcare providers as well.
For a clear example of how powerful a different label and approach may be check out the facts about Dihydrogen Monoxide at www.dhmo.org.




"Last year's HxD conference was so amazingly inspiring, and has definitely caused me to strive harder and become more passionate about improving our healthcare system." - 2012 HxD Attendee


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