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InMyHands

InMyHands is a creative way for independent types to capture and update end-of-life wishes, without navigating complex systems and forms.

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Who is your idea designed for and how does it reimagine the end-of-life experience?

InMyHands is for people 30-70 years who are D-I-Y individuals, forward planners who are willing to understand their illnesses as they arise, and want be an active decision-maker in their end-of-life treatment. Frontline medical staff and those in aged care facilities are also beneficiaries.

InMyHands reimagines the end-of-life experience because it is designed from an individual, human-centred rather than medical point-of-view. And we know not all users have the same needs.

I invite readers to peruse the following 5 attachments at the end of this post, which provide additional information on InMyHands progress and the changes that have occurred during the refinement phase:

01 biz model and stakeholders: 2 pages

02 initiatives and influences: 2 pages

03 insights: 2 pages

04 user types: 1 page

05 user journeys: 3 pages

05 stakeholder and expert interviews: 2 pages

BACKGROUND

A business model canvas summarises the start-up vision, showing how InMyHands creates value for users and key healthcare partners, with iterations as I receive feedback and continue to refine the concept. A stakeholder map identifies the key people associated with the concept, their roles and the system of care that surrounds the individual - each stakeholder has an influence on the individual’s experience at different life and health stages. The model and map are contained in attachment 01 biz model and stakeholders.

Problem statement: The barriers to advanced care planning are high. It is a complex, unfamiliar and emotional process. Many individuals do not understand the forms or the consequences of their end-of-life preferences. It is not surprising that too few people create plans, and that those completed are poorly written. The result is that individuals lose control over end-of-life decisions; loved ones’ experience unnecessary stress and distress; and frontline medical staff struggle to interpret poorly expressed wishes. Not to mention the medical costs for unnecessary interventions borne by hospitals, aged care facilities and ultimately society.

Initiatives and influences: Information on the myriad government, medical and private websites is almost uniformly presented from a medical and/or quasi legal perspective. And the content dry and super factual. A few websites break this mould and are worthy of mention because they have helped me refine/confirm thoughts about InMyHands. They are https://www.farewill.com, https://www.myvalues.org.au and https://www.prepareforyourcare.org/page.

In thinking about how to personalize InMyHands for differing user needs, I’ve found inspiration in industries as diverse as health insurance, e-tax returns and photoshop elements editing software! What these have in common - and share with my vision for InMyHands - is that an initial choice by the user, based on their particular characteristics and needs, funnels them down a particular path, offering customized information and plans/programs to help them readily achieve their goals.

In attachment 02 initiatives and influences I explain why and how these websites and examples from other industries influenced my thinking.

Insights: I’m human and this is emotional --

Looking at end-of-life planning from a human-centred rather than government, organisational or medical point-of-view we discover ...

  • end-of-life planning is intensely personal, yet websites adopt a one-size-fits all approach
  • most individuals do not understand medical treatments and terminology, yet websites use this language and the end-of-life planning journey is unclear -- farewill and prepare are exceptions
  • governments and hospitals want people to create end-of-life plans, yet people struggle understand the choices, the consequences of their choices or legal status of their wishes
  • there’s wide-spread recognition that individuals are ill-qualified to make decisions about medical treatments and that end-of-life choices are better made through clarification of personal values and what are/are not acceptable outcomes, yet advanced care forms still ask people if they want CPR etc.
  • more people are engaging in end-of-life conversation, yet uptake of end-of-life plans remains low
  • end-of-life decision-making is treated as a dry and rational process, yet we know it is anything but
  • family or doctors may have different views of end-of-life preferences than the individual and this clash in beliefs can cause significant distress


-- and it requires effort - from an individual’s perspective the cognitive and emotional effort required to become aware of, consider, create, update and ensure enactment of their end-of-life wishes is considerable.

Further details and a framework that captures this effort are available in attachment 03 insights.

Solution: advanced care planning solutions are typically large-scale and longer-term e.g. government and/or hospital-led awareness campaigns, systemic changes to government policy, medical training, medical awareness and legislative frameworks.

InMyHands is a more nimble solution that is designed to empower individuals. It guides users through the end-of-life planning journey from creation to the enactment of plans, and loops around between create and update to allow for changing experience, health situation and preferences over time. It allows the person to ‘start where they are’ with plans that take into account age. readiness and health status. It it lowers the barriers that prevent people getting started by making the creation and update of medical wishes easy to do, easy to understand, light in tone, and visually engaging. And the design is driven by the following ---

HUMAN-CENTRED PRINCIPLES

  • help me get started easily and without having to understand medical terms
  • start where I am now and let me build over time as I age and/or my health changes
  • don’t make me do more than I need for my age stage and health status
  • let me choose the type of plan I want to create - be it simple or complex
  • give me more detailed information as my needs become more complex and my understanding increases
  • reassure me that my plan is clear and comprehensive enough to be understood and enacted when needed


KEY CONCEPTS

InMyHands tackles the problem of low uptake and poor quality plans with these key concepts:

  • an easy-to-follow visual roadmap - what I need to do now and what next
  • ‘someone like me’ - recommendations for plan type based on someone of similar age/health
  • ‘mix and match’ - pre-prepared/standardised statements that can be selected and ‘dragged’ into a plan template to help users get started quickly and with minimal knowledge
  • care companion ‘compatibility quiz’ - how comfortably your care companion can represent you and make decisions in line with your values
  • creative expression of wishes through various media - words, a video or podcast with family and friends, a storyboard for different scenarios e.g. @ home, the hospital, an aged care facility or hospice
  • IDEALLY a process that explains the potential consequences of an individual’s selected values and health conditions - investigation needed
  • an electronic report that confirms plan preferences and robustness, with the flexibility to make changes before converting it to the preferred medium and sharing it with key healthcare partners


InMyHands BENEFITS

Individuals -

  • use a process that is practical, simple and visually engaging
  • create plans that can be as short and simple, or longer and more detailed
  • can create plans at home alone, with family and/or friends
  • from culturally and linguistically diverse populations are catered for
  • have greater assurance that plan can be implemented as designed because of the care companion compatibility quiz and the use of pre-prepared statements that are easily interpreted
  • game-like elements and pre-prepared mix-and-match information create a less formal and lighter-hearted take on a typically heavy topic


Frontline medical staff and aged care workers -

  • interact with a higher percentage of individuals who have clear plans
  • more easily interpret and enact plans that are contain easy-to-understand standardised wording
  • experience reduced conflict among care companions and other loved ones


USERS AND THE USER EXPERIENCE

I used a matrix based on life stage and health status as a stepping stone to identify the following 4 types of representative users: Johnny who is young and healthy; Sasha also young but has experienced chronic childhood illness; Franklin, mature and healthy; and Millie, mature but with repeated chronic illness. How this matrix led to the 4 user types is explained in attachment 04 user types.



User experience map

To illustrate the user experience, and for the purpose of prototyping I’ve decided to focus on Johnny, who is young and healthy. See 05 user experience journey.

Johnny overcame his initial (and youthful!) hesitation about planning ahead and contemplating his own mortality because his best friend Sam suffered brain injuries in a motorbike accident and is being ‘kept alive’ by machines in a nursing home. Johnny dreads the thought of ‘living’ like Sam so he used InMyHands to get started quickly with a few ‘big bucket’ items for his plan (e.g. no life-support if no chance of recovery to current state of heath, and organ donation) which is all he is interested in right now. He knows he can ‘beef up’ his plan at any time with additional details, add a Medical Power of Attorney and even express his opinion on the controversial topic of assisted suicide. And he’s set up a 2 yearly notification to review his plan, unless his personal circumstances and or health change in the meantime.

REFINEMENT PHASE PROGRESS

So far I have interviewed and obtained feedback from the following 5 stakeholders and experts:

  1. an advanced care planning co-ordinator in community health
  2. physician and rheumatologist with palliative care experience
  3. project manager working on the integration of Shared Care Plans between GPs, Hospital, Community Health, Ambulance, private Allied Health professionals, My Health Record and Aged Care Facilities
  4. medical registrar in a hospital emergency department
  5. one young and healthy prospective user


And these were the key learnings:

  • the medium used matters less than clear and comprehensive statements that make it easy for care companions and frontline medical staff to follow
  • it's better to start small and simple than not at all; and an individual can create a useful plan even if it doesn't cover all medical scenario
  • compatibility between the individual and their nominated ‘care companion’ is so important - the latter needs to be comfortable representing the person’s wishes, otherwise it's a barrier to enactment
  • provide a summary report to users who’ve created their plan to let them review and subsequently change their registered preferences
  • plan authority: plans do not require professional medical input; doctors take patient-initiated requests into account; the care companion does not need medical power of attorney, although it is more thorough if they do - although another source suggested plans required a digital signature, and for each plan update
  • the ‘treatment pathway: increasing government support for eHealth makes this a viable way to get end-of-life preferences into the hands of people on the treatment pathway
  • improved plan quality: plans created from pre-prepared statements or selections from controlled drop down lists would standardise and improve the quality of information for individuals and medical staff 


Attachment 05 stakeholder interviews describes in more detail the feedback from prospective users and experts.

Refinement phase pivots / changes

Target audience age range: in response to Community and expert feedback I extended the target audience age range from 35-65 to 30-70. I excluded those over 70 because they are often already the target of GP and aged care-initiated programs.

Outcomes vs. interventions: both research and prospective users say the likelihood of recovery is a critical factor in decision-making. Several prospective users said they are less concerned with interventions than outcome i.e. full/partial/no recovery. For example, an individual might say yes to artificial feeding if this is short-term 'bridge' to full recovery. They might say to the treatment if it has to be on-going because they are not expected to recover. This is a great new idea I'll use for framing plan decisions and content.

Translation of personal choices into what that means from a medical point-of-view: at idea submission phase I envisaged that InMyHands might enable individuals to express their end-of-life wishes, then ‘translate’ those wishes into what that means from a medical point-of-view. Prospective users expressed interest in knowing how this might work.

What I’ve learnt during the refinement phase is that how to achieve this 'translation' is a rather wicked problem that needs further investigation.

  • some expert feedback suggested it feasible
  • other expert feedback suggested a better starting point for making the connection might be the individual’s medical condition e.g. the user selects from a list of ~ 8 conditions (based on dementia and the major body systems e.g. heart, lungs, cancer, blood etc.) and their selection then provides them with tips on things to consider for inclusion in their plan
  • algorithms that enable such a 'translation' work better with ‘controlled language’ or standard/pre-prepared language than with the variable, free-form responses that currently appear on plans 

 

BIG QUESTIONS

  1. Is eHealth sufficiently embedded in healthcare, and used by key partners -- GPs, Specialists, and frontline medical staff -- to be the ‘distribution channel’ of choice for the various media used to create an InMyHands plan?
  2. What is the most practical and useful way to explain the connection between value statements individuals choose and the consequence of these choices in terms of outcomes?


What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

1. Understand the needs of users and service providers. Canvas users on topics such as take up of advance care plans (ACPs), barriers, concerns, information needs. Understand the specialist point-of-view - GP, emergency medical registrar, aged care manager - what information to include, decision software, making ACP information available along treatment pathways, and barriers to realising individual’s wishes.
2. Design the reimagined target ACP experience.
3. Create and test prototypes.

What skills, input or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

- identify others who may be working on similar ideas
- potential barriers to enacting an individual’s wishes
- advice on other similar, suitable technology solutions that can be repurposed
- specific information on decision-making algorithms and development in healthcare
- anything that makes you go -- uh oh, maybe you’d like to reconsider -----!!

Tell us about your work experience:

Service experience specialist with cross-industry experience, more recently focused on healthcare.

This idea emerged from

  • An Individual
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Team (6)

Yuan's profile
Yuan Wang

Role added on team:

"Yuan is a user experience interaction designer who has been a sounding board for my concepts and collaborating on the ux map and screen mockups. Yeah!"

liz's profile
Kay's profile
Kay

Role added on team:

"Kay is a physician and rheumatologist who has been a fantastic source of ideas and a great critical thinker."

Morgan's profile
Morgan Meinel

Role added on team:

"Morgan is an enthusiastic supporter of IMH who offers great practical healthcare experience."

Rosie's profile
Rosie

Role added on team:

"Rosie represents the young and healthy. She also happens to be a marketing/consumer insights specialist. It's a good combination for fresh perspectives on my concept."

andrea's profile

50 comments

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Photo of OpenIDEO IDEO
Team

Congrats on being a Top Idea, Liz! It's been absolutely inspiring to see how you've developed InMyHands to re-imagine the end-of-life experience for ourselves and our loved ones. What an amazing journey it has been. In the coming weeks, we'll be making an official announcement to celebrate you and the other Top Ideas of the End of Life Challenge.



In the meantime, we would love for you to share your story in the upcoming End of Life Impact Phase. The Impact Phase is a space where the OpenIDEO community can share updates on how our projects are progressing beyond the challenge. For reference, here's a template for writing an Impact phase story:http://ideo.pn/1U9DrSN Well done Liz!

Photo of Morgan Meinel
Team

liz ramsay , Thanks so much for adding me to your team! I have been a huge fan of "InMyHands" from the first time I saw it on this platform, so I am grateful to play a part in it's evolution! From a nursing and healthcare perspective, please let me know how I can be most helpful to you. 

Just a few things to note!

- I'm very glad to see that the qualifying age range for "InMyHands" has been extended. Would you consider broadening it even more? I do believe many people of various ages and ailments, young-middle-aged-elderly, would be interested (Myself included!) 
- I recently filled out my Five Wishes document, and I was thinking how great it would be if I could use a creative avenue (rather than just simply writing or typing my wishes) to express my wishes through media - which is something you make mention of. I like the idea of having the option of a video attachment that my health care proxy and/or family could view. 
- At Mount Sinai Hospital, we just recently started using electronic advanced care planning forms that the healthcare provider goes over with each patient and then has them sign, after which they are uploaded into their electronic chart and accessible to their GP's and healthcare team. I think increasingly more, this should be an available option and makes the document readily available for the healthcare team to view. It also places less pressure on the patient/person filling it out to carry it in paper form at all times. Perhaps, "InMyHands" could have an accessible database that each individual's health care proxy/decision maker and doctors could retrieve at any time., with their permission.
- I really love the idea of having a "Care companion comparison" feature available. For many years, I just assumed that my mother would be by decision maker, but after having several conversations with her, I realized that she would indeed not be a suitable person to make decisions for me in the event I couldn't do so myself. For the very simple reason that she gets very emotional even thinking of me becoming ill or dying. Naturally, I understand this and gently explained to her that I would have someone else be my decision maker, as to remove that burden from her. As a Palliative Care and Hospice nurse, I can not emphasize enough how important it is to choose wisely a health care representative for oneself, who will honor your wishes without letting overwhelming emotion become an obstacle to that process. It's really great that you are considering this. It's quite tremendous!
- I think it's an important component that you are considering providing prompts or pathways  based on the 8 main body systems and associated potential illnesses. Have you considered including the most common causes of death, perhaps also based on family history or co-morbidities? 

It's awesome to see "InMyHands" evolving in such excellent ways! All the best to you in the refinement phase! :) 

Photo of liz ramsay
Team

Morgan, I love your enthusiasm and the practical perspective you bring to the team. With regard to the age range -- I've typically focused on niche target audiences so it seems I need to be coaxed into broadening the audience for this concept!! I suspect it could equally apply to youngsters like you (!) -- as long as we can customise information/messages and plan types in a way that makes it relevant to different users types in terms of their age and health status. 

Yes, like you I'm really excited about the care companion compatibility, for which we can thank Kay. It was her idea and I built on that with a quiz concept. Several people I've spoken to about InMyHands (IMH) also expressed your thoughts, that sometimes the most 'obvious' people for this role actually may not be those most closely aligned with the individual's end-of-life preferences. And that may lead to some difficult conversations as the person finalises their plan!!

Yes, my professional experience confirms the advantages offered by electronic rather than paper-based forms. They support for more sophisticated plan design and information quality.

Re the 8 body systems -- that came from one of my experts, a medical registrar who works in a hospital emergency department. Your idea about including common causes of death should definitely be thrown into the mix as we progress to detailed design (e.g. screen design, what goes onto drop down lists etc.) I also think we should be thinking in terms of likelihood of recovery -- i.e. will live but not recover to prior health/capabilities. 

Photo of Morgan Meinel
Team

liz ramsay Thank you for your thoughtful response! Congratulations on making it to the Top 10 Ideas! Please don't hesitate to let me know how I can be of further help and assistance :)  

Photo of Madeline Duhon
Team

This seems like a wonderful idea. As my Grandfather is going through a rough time at the moment, with somewhat reduced agency over the decisions about his life given his condition, this has been something that I've spoken to with my own Mother several times. 

Each time, I've been somewhat uncomfortable; though I recognize that it's helpful to know her wishes well in advance of her approaching end of her life and free from any emotions or pressures that may arise when that time comes, each time it's been a tricky conversation to have. 

How helpful it would be to have the guidance of something like InMyHands to "tick all the boxes" and make sure that her wishes are recorded clearly in one place. 

One suggestion to build on this idea would be to add in features for involving family members in a constructive way. One way I could imagine this is if family members are able to contribute to the process of making the decisions up front. A second way I could imagine this is if InMyHands comes with guidelines for sharing the final decisions and plans with family members, perhaps in a more personal and structured way than simply sharing the completed paperwork. 

Looking forward to seeing this idea evolve!

Photo of liz ramsay
Team

Madeline, I have been through the same experience with my mother and father so I understand how hesitant you can be to have the conversation and on the other hand how much of a relief it can be when agreed plans are in place. I envisage that the individual could create the plan by themselves (some may prefer this) or in conjunction with family and/or friends. and that their nominated 'care companion' would also complete a similar values-based 'quiz'. And rather than co-signing paperwork, the individual and whomever they wish to include in the plan-making could create a podcast or video together. Would that meet your suggestion for family member involvement?

Photo of Madeline Duhon
Team

Hi Liz, That does sound like a great way to involve family members! 

Photo of Tania
Team

Dear Liz, this proposal has the wonderful potential to encourage discussion by people of all ages about their wishes. One thought, as technology changes, will any recorded video documentation of wishes remain accessible? I look forward to engaging further with your proposal as it develops to the next stage.

Photo of liz ramsay
Team

Tania, hmm yes technology. Who remembers floppy disks? What?? We would need to think about average time interval of technology leaps vs. the lifespan of the individual making the plans. Do I outlive the medium I have used?? 

Photo of Sharron
Team

The decisions we make and refuse to make long before we die help determine our final outcome especially in the case of a terminal illness, so an application such as yours, Liz, can only be regarded as a positive step in making informed decisions.  I will certainly take up the option if such an app as soon as it is available.  Good luck with the project, you're doing good work, Sharron

Photo of liz ramsay
Team

Sharron thank you for your encouragement. You can be my early adopter for the app!!

Photo of Inge Lederer
Team

After reading the update, I'm getting a really good picture about how this idea might look and work in practice. I can really see it relating to other topics - e.g. will planning, organ donation, power of attorney and so on. Modules on the system that hook into others' databases with permission? I like that you have catered for quick and easy preparation, or as complex as you like - and have taken into account differing levels of interest based on differing levels of health.  I wonder if it would be possible to link it to govt health records so you get alerts if you forget to update it after being in hospital and so on. Great thinking, and all the best with your submission.

Photo of liz ramsay
Team

Inge I'm so pleased to hear that the refinement phase work is clarifying the intent of InMyHands. And encouraged by your suggestion that later on the scope might be extended beyond medical end-of-life wishes.  I hadn't considered alerts after hospital visits/medical events but its a really good idea. I like that we are adding layers of value to the original concept. Thank you!  

Photo of Rosie
Team

Hello Liz, I love the idea of capturing people's wishes through a range of mediums and different levels from Beginner to Expert that present varying options would make it playful yet useful.  I can see the appeal to younger people, who may have close virtual relationships due to social factors, beliefs or distance, but not have a nearby 'care companion' who could ensure their wishes were followed.   Reading your documentation I've realised there are many areas such as medical power of attorney and the ability of my family to follow my wishes that I haven't truly considered.  An app that could guide me through some key considerations based even on age would be immensely useful.  It would also help me work through at which stages I may want medical intervention and if so, can I have 'a' but not 'b'.  Technical but not overwhelming and a glossary perhaps.
I look forward to the next phase.

Photo of Kay
Team

Hi Liz
the concept of InMyHands is developing as a realistic option for self driven advanced care planning (ACP).
I had a few thoughts also.
-The concept of 'like me' options I think can be a great way for people to start. One suggestion would be to switch the gender of the 2 older or 2 younger options so that it is not only the 'female' story that has a significant past medical history, (or you could have a gender toggle at this point for those who gender identify). I suggest this more because historically men may not address health issues as much as women and may be quick to de-identify with a 'character'.
-The issue of timely access of an ACP to a health facility in an acute event is critical to the effective application of a persons health wishes. I wonder if a secure record of the ACP, via document/video/in App content, could be held on your own smart phone with or without a copy held by your 'care companion' as an option. The ehealth records are not widely used enough at this point to be the only option.
-Disseminating your end of life wishes 'too early' may be a barrier but if held more privately could encourage a higher rate of uptake.
-I suspect that a secure electronic signature, with a verification process, of an ACP could be setup to reduce hard copies and witnessing issues.
Hope these thoughts are of interest and I look forward to seeing where this progresses to.
thanks Liz

Photo of liz ramsay
Team

Kay thank you for your thought-provoking ideas! Thanks for drawing my attention to both females being those with chronic illness experience, that wasn't done intentionally. Yes we could add gender as another variable or more simply use icons/buttons and labels e.g. young and healthy etc. on the someone like me page. What do you think of not including gender?

I like your suggestion to hold your 'creation' in an app as well as using a secure electronic signature, that surely should be possible. I have also pondered the feasibility of storing such information in the ubiquitous medicare cards that we all carry pretty much all of the time. 

Photo of Kay
Team

Hi Liz 
yes gender neutral characters for each age group would be a great idea.
This could be tested in development phase.
I can see the concerns about ensuring an ACP is readily available at the appropriate time. This is relevant in case of a dramatic sudden health event such as stroke, heart attack or injury.  Hopefully at these times there will be a next of kin/ friend who is aware of the ACP.  This may or may not be the care companion.
I presume a 'contact' hierarchy could be factored in quite easily. Contacting a local medical doctor out of hours may be more difficult than contacting a friend or family.  Given the lack of fully functional centralised medical records this will be important to cover. 
Hope these are helpful ideas.
cheers Kay

Photo of liz ramsay
Team

Ah Kay you've just introduced another really good notion - that of a contact hierarchy, particularly if you nominate more than one 'care companion'. I'm sure we could have some 'business rules' than could function in the background to put this hierarchy in place.

Photo of Poppsy Innis
Team

Hi Liz, I like the direction this project is taking. The light hearted  approach will encourage more people to look at this difficult subject. I was interested in one of your comments about refusing artificial feeding if health will not return to previous level. I did not know this was a choice we could make. Which leads me to wonder if some sort of list of what can be included in the plan would be helpful. Looking forward to the next stage. Ann

Photo of liz ramsay
Team

Hi Poppsy. I'm so pleased the light hearted element is apparent. Yes I am developing the view that our stated values and preferences are influenced by whether a medical treatment (even if we don't understand exactly what that entails) is of a short-term bridging nature to get us back on track or for the rest of our 'lives' because we can't function by ourselves.

Photo of Rose
Team

Hi Liz,


Love the idea – clearly a submission that has been thoughtfully considered and well developed.

I particularly like the focus on simplicity – incorporating ideas such as ‘mix and match’ & ‘someone like me’ is a great way to remove complexity and uncertainty for those who have not considered end-of-life planning.

  
Another element I think is brilliant is the idea that the platform can translate personal values into ‘medical speak’. As you pointed out, end-of-life planning can be daunting and emotional which is enough to send people running the opposite direction! A platform that helps people positively articulate their personal values (which just so happen to correlate to medical actions) can help shift the idea of end-of-life planning from 'how do I want to die?' to 'how do I want to live?'.

In regards to distribution, Private Health cover is another avenue that you could potentially explore. A lot of these organisations have apps/websites & affiliated programs promoting the idea of 'living your best life' - why shouldn't that include living your best life right til the end?

 
Looking forward to seeing InMyHands continue to evolve.

Photo of liz ramsay
Team

Rose, thank you! I too am a big fan of simplicity as there are many advantages to the user if we can make the complex simple and clearly explain the complicated. The 'translation' of values to medical actions has attracted considerable attention and you will see that in my response to other comments I am pondering my own initial enthusiasm for this concept. What I really like about your view on this is the meta-level question you pose which is the shift from how do I want to die to how do I want to live. This 'translation' concept clearly needs deeper thinking and some feedback on prototypes. I wonder if you might help me think this through? And that invitation goes out to others as well.

Rose, brilliant idea to consider private health organisations as key partners!! And I love the idea of living your best life, until the very end.


 

Photo of Kym Batt
Team

Hi Liz,
Your idea is really looking good. I am still wondering what is the best way of letting health care professionals know about the existence of the plan. In past times some people would wear or carry an SOS alert. Maybe the link to the plan could be included on some sort of device.  I am also a bit concerned about the translation of everyday language into medical speak.  I don't know that linking the language to a body part is helpful. What about embedding a medical dictionary with key word searching into the InMyHands development tool?
Great work. Kym

Photo of liz ramsay
Team

Kym, thank you! You're on the money with your pondering the best way to let health care professionals know about the plan. What are your thoughts about Kay's app suggestion, or my interest in knowing if the information could somehow be embedded in a medicare card that we all tend to carry, similar to credit cards? I'm not a tech expert so we'd need help with the medicare option. 

Agree, the translation is looking less likely. And I really would like to avoid medical speak. Oooooh embedding a medical dictionary with keyword searching!!! I was intending to include a glossary, particularly for those with a greater predisposition for, and knowledge of, medical conditions and detail.  I'm liking your idea Kym!

Photo of Lois Perelson-Gross
Team

Dear Liz,
Thank you for thinking about creative ways to reach the this important age group! Question: What's the process of "translating" the various modes of expression/user inputs into the language of ACP documents? Would the user get offered a range of options that seem to align with the personal way they've expressed their wishes? Would the system "learn" over time that people who say "x" probably desire ACP choice "y"? Have you looked at some of the existing tools like Go Wish, Cake, and My Gift of Grace that help people clarify their own understanding of their wishes?

Photo of OpenIDEO
Team

Welcome to the Refinement phase Liz! Here are some key questions and milestones we encourage all idea teams to consider in the Refinement phase:

1. How might this idea address the unique needs of the target audience you're designing for?
2. Clearly summarize the value offering of your idea in 1-2 sentences
3. Communicate your idea in a visual way with user experience maps http://ideo.pn/UX_Map
4. Identify assumptions that need to be answered in order to validate your value offering: http://bit.ly/1Oi8ZHu
5. Collect feedback from potential partners and users to answer the assumptions you’ve identified.

Lastly, here's a useful tip: When you update the content of your post, it'd be helpful to indicate this in your idea title by adding an extension. For example, you can add the extension " - Update: Experience Maps 07/12" to you idea title. This will be a good way to keep people informed about how your idea is progressing!

Photo of Shane Zhao
Team

Hi Liz, here is an additional piece of feedback for InMyHands!

Alex Drane, on our Advisory Panel, was excited about this idea and suggested looking at the website Cake for inspiration. She mentioned that health care is typically a field in which things have to be dry and super factual, but for this topic, people need respectful levity and humor. Even the way in which incomplete fields are responded to on a website make a difference. The process, and websites for this topic, should not be intimidating, but should spur joy in people.

We're looking forward to how you'll work with Yuan to prototype a section of the InMyHands user experience — and the feedback that you might get from potential users. You might also like to check out these two like-minded ideas in the Refinement phase: Common Good Advance Care Planning and Copilots in Care - Planning Simplified 

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Hi Liz this concept is fantastic. The ability of individuals to easily and simply express their end of life wishes  would not only offer comfort to the individual, their family and friends but also comfort to the healthcare givers to deliver appropriate medical care. A self driven and self initiated plan prompted by InMyHands that can translate into a medical environment could be a valuable tool in delivery of health services, not only at the end of life but before. I will be interested to see how this concept progresses.

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Liz, I really love this idea. Thanks so much for sharing it! As a Palliative and Hospice Care Nurse, I have been witness to the many obstacles and challenges that can arise as the end of life process nears for an individual and their family. Having our wishes known, and in such a creative and individualized way, is so essential and alleviates a lot of potential stress and anxiety had our wishes not be known. 

Are you familiar with the 5 Wishes Document?: https://www.agingwithdignity.org/five-wishes/about-five-wishes - I have personally filled this out for my end of life wishes. I'm 32 years old - and agree with andrea schneider that "InMyHands" does not necessarily have to be limited to the age group you suggested. Why limit such a fantastic idea? :)

Something different and very enticing about your idea is the potential of a video as an avenue to express one's wishes. I never thought to do that, but would be very interested in doing so. Perhaps having a family member or loved one participate in the creation of it could be very meaningful.

In regards to being able to access the document - maybe there could be some kind of online database to register it - a database that could be accessible to all health care institutions.

Thanks again for your idea! I look forward to seeing how it evolves! All the best to you :)  

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Morgan thank you for your insights gained first hand through your role. And for the link to the 5 wishes document, which I'll read and bring into my thinking. And yes, I had envisaged the video might be made with the participation of others, perhaps in conversational style. 

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liz ramsay  - You are most welcome! This is a remarkable idea. Congratulations on making it to the refinement phase! :) I look forward to seeing how your idea manifests!

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I love the name and the concept. I'm working on a concept in similar space, but different continent. Good work, and good luck!

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Doug and back at you, you're a dab hand at nice titles! And how good to be approaching it from the vantage point of a healthcare provider, one who is taking on "the current reality" of medical practice. I'll keep watch as your idea moves forward.

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Through personal experiences, from varying viewpoints, I have witnessed the frustration and futility an individual can feel during the time of serious illness especially with medical staff who are constrained by regulations etc.  This project has the potential to create meaningful discussion between the patient, medical personnel and family/friends.  Great concept!

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Sharron, thank you and wouldn't it be great to be able to reduce that frustration and futility?

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I have had an advanced careplan waiting all year for me to complete. This idea sounds like a wonderful way to make the process simpler. I also like the idea of easily updating as circumstances change. One of the many benefits an online careplan could provide is a far greater reach to the community, encouraging many more people to have advanced care plans. One area I feel is important through personal experience is for people to have thought out what they want prior to getting ill as then it is so difficult to make rational decisions. Good luck with this project. I look forward to seeing the final product.

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Spot on A Stock. Hopefully by reducing complexity and providing flexibility we can all take that first step!

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We have processes for recording wills, for deciding if we are organ donors, for nominating beneficiaries, for saving for a funeral - but when we fall ill, be it suddenly or slowly, it's difficult for others to know what we truly want - it's a subject we don't often talk about, a someday topic. So it's refreshing to see an idea that walks each of us at any stage in our lives through a process that helps us to articulate what we want and how.

I like the idea of it being systemised, so you can update it easily and give access to others like someone nominated as our enduring power of attorney.

I lost my mother and young sister in a car accident, but I do wonder what would have happened if my teenage sister had been on the edge of death in a hospital at 13 years old. I can see a further use for the tool/process because of this -  it'd be great to know what the situation for dependants and minors would be as well if their primary caregiver died suddenly.

Certainly brainstorming during prototyping will flush out broader application of this idea.

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Thanks Ing for showing other ways in which the tool/process might be valuable, arising from contemplation of your own personal story. I hope you stay with the idea as it progresses to help with that brainstorming!

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Such a fantastic initiative. Navigating difficult processes, procedures and forms is way down the list at any time in life. Being able to carefully consider the last part of your life in a simple and supported way, knowing the options and working through simple processes and procedures using simple tools, would allow you to continue to express life on your terms.

I imagine this would also remove a lot of the anxiety for all concerned, including yourself, your family, your friends and the medical world. You could focus your time and attention on living as well as possible to the end, rather than wasting time trying to work out how the system/bureaucracy works.

Wishing this project all the very best. I'm confident that Liz's successful service-centred/human-centred project experiences throughout her career, along with personal experiences of family loss, will deliver great outcomes for the community.

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Helen I am of the same opinion about starting early and simply to reduce the stress of trying to convey such important wishes in emergency situations, already a time of high emotion. Thanks for your support H!

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Awesome idea! Your title for this project is perfect!!

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Cheryl, thank you for your enthusiasm!

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I like the name "In My Hands" (maybe In My Time") and the concept of having an online tool a lot.  I'm not sure why there would be any age limits.  I'm 68 and would use something like this tool.

I've found approaching and completing an Advanced Care Directives/Plan difficult to do on every level.  I should have finished, at least one, many years ago.  I've had breast cancer since 1990, every stage, every treatment possible.  I've survived it and worked hard to be positive. 

This past April 2016, before having a liver biopsy, I decided I had to do one.  I didn't know if my breast cancer had spread to my liver (it did), which would make my cancer a whole other deal for me.  

I knew I was my own barrier, there was no pressure from anyone to make one decision over another.   I don't have any living family members to take into account, just great friends who would support me in any decision.   So I made an afternoon "party" out of it, with snacks and drinks and some humor.  A computer program tool would have helped me and everyone else as we went through the paperwork process.

Being familiar with the Conversation Project, and anxious to work with them in Portland, OR, through OHSU, I've been looking at ACD's more carefully.  I feel we have a long way to go to make these type of documents user friendly.

The Oregon Advanced Care Directive/"workbook"/paperwork was grueling, tedious, redundant and more upsetting then it needed to be.  I can't imagine having to involve relatives/people of influence and wildly divergent opinions of core issues at the same time.  

Luckily, I have terrific friends, who wanted to work as a team.

The person who agreed to be my health decision maker had a really good idea.  She didn't want to be "alone", without any support from my other friends, when the really tough decisions had to be made.  She asked if I would be willing to ask a couple of other good friends to participate and understand what was going on.  A Team Approach, not just good for me, but just as importantly for my friends.  They could support me and my leader and help her not feel alone when things get hard.

Having an online tool would make a huge difference in terms of recording the final answers, keeping track of the discussion and importantly, next steps.  For example, one of my friends took on the critical job of notetaker.  I never even thought about it!  I hadn't realized how important that role was in this situation.  I wasn't taking notes, I was trying to think, answer questions and make decisions.

She wrote down the "to do's" for me such as developing a list for "my team" and me, of key people in my life, their phone numbers, my websites and anything or anybody needing to know about my health, what was happening to me and when I died.  

I think this idea has promise.

Andrea

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Andrea thank you for sharing your in-depth, personal account and the barriers you encountered. Your comment about the age of the target audience has me (re)thinking - nominating a range is a somewhat arbitrary process! I agree, collaborating with others - as you have done - is a great way to start on this important activity. Thank you for your support.

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P.S. to Andrea - I just wanted to explore your thoughts when you suggested "maybe InMyTime". Was it associated with a sense of doing it in your own time and in advance i.e. not making those decisions under the duress of an acute medical situation?  

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I really like this idea and would like to see it developed further. A key issue to consider is how this document can be found when it is needed (the person won't be able to tell you they have an advance care plan). How would a hospital or ambulance etc be able to retrieve it so that it could be activated?

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Very important issue.  How does one hospital get the info, if you are out of state for example?  This has been a big problem for people I know, who have Advanced Directives in one hospital and got sick in another state and admitted to a totally different hospital.

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Zoe, and Andrea, I agree. Along with improving take up rates for advance care planning, making the plan available to those on the treatment pathway is a big challenge. After I've developed a deeper understanding of user and service provider needs - the why and the what - I'll focus on the options as to how that information might be shared.

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Thanks Zoe! Ah, I hope I've addressed (for now) the important issue of retrieving the information in my reply below. I'm keen to progress the idea also!