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Connecting Lives -Formerly “Nurses matter too” - Updated 8/5/2016

“How might we provide dying patients and their caregivers precious connections to allow them to live their lives fully?”

Photo of Andrea Kang

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

“Connecting Lives” is a program that redesigns how patients and caregivers in the Palliative Care make connections to the world around them (people, environment, nature) and allows everyone to actively participate in the connection (and memory) making process. Through this program which includes two main components, Tender Memento and SuperPal, caregivers (with the help of community partners and volunteers) help patients to live the remaining days fully.

Note: Based on the feedback of Mt. Sinai Palliative Care Unit, we pivoted our idea to focus on developing connections between patients, caregivers and families.

Our Point Of View (POV):

How might we provide dying patients and their caregivers precious connections that will give meaning to the patients’ remaining days so that they can accept death with gratitude and live their lives fully?”

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Questions we asked ourselves:

What if life ends not when our heart stops and our blood stops flowing through our body, but by when we stop making memories and making connections to the world surrounding us?

Then can our lives continue long after we are buried… because we can still stay alive with memories that others have of us and through the connections that we have built on this earth?

  • How might we we create those memories and capture them?
  • How might we create the connections between those who are getting ready to depart this earth and those who are remaining?


Who inspired us?

  •     Morgan- a palliative hospice nurse who has been in nursing for 9 years.
  •     Sarah- a director of Pediatric Palliative care at a children's hospital in NYC.
  •     Bettina- a pediatrician, most recently working with adolescent youth within the Juvenile Justice System.


What are we proposing?

  • Connecting Lives is a program that redesigns/reimagines how patients and caregivers in the Palliative Care make connections to the world around them (people, environment, nature) and allows everyone to actively participate in the connection (and memory) making process.
  • Through this program which includes two main components, Tender Memento and SuperPal App, caregivers (with the help of community partners and volunteers) will be active participants in helping patients to live the remaining days fully and create memories that will last even after the patients leave this earth. This is part of a longer-term plan. The results of the activities that the patients get involved in will continue to function as a legacy after the patients die. This will empower and rejuvenate nurses and will allow them to be recognized for the work they do.
  • With Connecting Lives, everyone (patients and caregivers) plays a vital role in creating and curating the memories that last even after the patients leave this earth and creating meaningful connections.

Here is Bob's story:


Why did we decide to focus on Connecting Lives Program?

Caregivers (doctors, nurses, etc.) in their attempt to care for patients sometimes feel powerless (and lost) when it comes to creating or nurturing meaningful connections at the end of one's life. We wanted to rejuvenate and empower patients and caregivers by allowing them to experience precious memory-making moments and create opportunities for them to connect with the world surrounding them.

For whom are we designing this solution?

Through this project, we hope to rejuvenate patients and caregivers (doctors, nurses, family) by encouraging them to actively participate (and provide means and resources to do so) in light and lively activities that will be captured in photo or video- creating a memento of a special moment- that will provide remembrance of tender moments with patients. Through these mementos and with the connections they made, patients' spirit will live on beyond death. At the same time, all participants will be able to connect amongst themselves and also with the rest of the world via SuperPal App and Tender Memento program.


How does Connecting Lives work?

Connecting Lives works via Tender MementoSuperPal App.

>> Tender Memento:

It is a volunteer program that connects 1) those who are involved in caring for the patients nearing the end of their lives and 2) volunteers who want to make meaningful contributions by creating/ curating/ capturing the moments and stories together. Tender Memento program organizers will also work with art schools, film schools, fashion/design schools to curate the events particularly for creating video and photo mementos.

View the prototype website for Tender Memento here:

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We designed the mock-up brochure for Mt.Sinai (particularly for children patients) Palliative Care Unit to introduce Tender Memento Program.

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Different brochures will be designed for different populations (i.e. nursing home, palliative care unit in hospitals, home palliative care, etc.).

>>SuperPal App:

It is a tool to facilitate the connection between patients, caregivers, family and volunteers. The patients/caregivers/community partners can download the app and connect with one another.

They will enter personal information - (such as...)

Who is your favorite singer?

Where is your favorite place?

What do you like to do when you are happy?

(Users can update this information any time)

Patients can connect with someone who is facing a similar illness and those who share similar interests. Patients can relate to one another and offer comfort. They can also continue to share their personal messages with their loved ones after the they leave this earth via recorded messages.

Volunteers/community partners can connect with patients/caregivers whose interests/offering may be similar (music, literature, etc.).

Families of the patients can connect with other families who are facing similar problems and share stories.


Below videos show App interface for two main users:

1. Volunteers:

2. Patients: (Connecting Lives Volunteers can help the patients/family to fill this out)

When can Connecting Lives program work?

We believe the end of life experience starts before and continues after the exact moment of death. While the program has potential to address the general “end-of-life” perspective, our current goals are to address two specific milestones of the experience:

    1) Patients' admission into palliative care to the last day of their lives

    2) A year after a patient passes away

Quick Summary:

How will Connecting Lives work?

Connecting Lives will carry out programming events and create precious connections for patients and caregivers in Palliative Care via Tender Memento + SuperPal App. Tender Memento program will allow patients to share moments of lightness and life with loved ones and caregivers. Volunteer videographers, photographers, and story-weavers (with community partners) will capture these special moments and share these images and stories with loved ones.

SuperPal App is used to aggregate data, connect with community partners, and with other patients and families.

Based on SuperPal App’s aggregated data, the Tender Memento team will plan activities that will address patients’ interests. When the activities are planned, SuperPal will inform patients of any upcoming activities that match their interests.  By actively seeking inputs from patients, families, and volunteer communities (via compiled data from SuperPal App), hospitals can create an environment where the patients can get the emotional and social connection they need at the end of their lives. 

Connecting Lives will also deliver the messages from the patients to the loved ones after the patients pass away based on the patients' pre-recorded messages (text, voice, video) as well as the mini-mementos created by the volunteers.

Some of the feedback we have received are:

"I think this is a wonderful idea and would be nice to introduce to other units not just palliative care unit."

"Have you thought about working with home-palliative care or nursing home? I think there is great potential there."

"I like the fact that you are giving us (nurses) the opportunity to be able to sign up for the activities. I would definitely sign up for gardening (even during my off hours)."

"I see it benefiting the family."

Our proposed solution was based on the insights we gathered from our inspiration. The key insights we gathered from our inspiration are shown below:

  • Morgan: (A nurse currently working at NYC Mt. Sinai Hospital Palliative Care Unit)

A patient dying of cancer with a couple of days to live took time to tell her how much he enjoyed his life. He told her he is grateful for the life he had and he can die without regrets. He meant every word … he was happy and grateful. It resonated with her because it is something that she wants every one of her patients to experience.

  • Sarah: (A director of pediatric palliative care in NYC)

“Accepting the end”

It is important to help caregivers, patients, and families change the perspective that “accepting death” is not giving up, giving in, or losing. This is about being ready for an individual’s time to pass on and accepting and helping make that as pleasant and peaceful as possible.

  • Bettina: (A pediatrician)

Medical school training focused on how to save a life, not so much on how to deal with the end of life (how to communicate with the patients/caregivers so that they can live the remaining days more fully).

There was a 5 year old child who died from AIDS-related pneumonia on the 5th day of her Internship training. When the girl died, Bettina didn't know what to do. She called her best friend. "I don't think I allowed myself to feel much." She didn't cry but felt the need to share and connect.

(See more detailed interview notes)


How did we develop our ideas and what have we been doing to refine them?

Step 1: June 13, 2016: Ideation - “Nurses Matter too” program: through empowerment, recognition, and rejuvenation this solution looks to improve the lives of nurses who are dealing with patients in the palliative care units. 

Read about our: first ideation session

Step 2: June 15 - June 19, 2016 - Empathy interviews were carried out with three healthcare workers.

Step 3: June 19, 2016- Ideation session continued.

Read about our: second ideation session

Step 4:  June 23, 2016: Prototyping (five prototypes were built to address various aspect of the “Nurses Matter too” program). They are:

  1. Super nurses draw my emotion
  2. Sing me a song
  3. Mood Master
  4. Rainbow
  5. Emotional Clock

Read about our prototyping session:

Step 5: July 4th &6th, 2016  Refinement

In preparation for the feedback session, we combined similar ideas and created prototypes.

Super Nurses + Rainbow = SuperPal, Mood Master + Sing me a song = Tender Memento

Prototype skits can be viewed here:

Tender Memento Prototype Skit

SuperPal Prototype Skit

Step 6: July 7, 2016 Live Feedback session No. 1

We visited Mt. Sinai Palliative Care unit to present our ideas and get their feedback.

We presented three ideas to Mt. Sinai.

Tender Memento:


SuperPal App


Emotional Clock


After presenting our prototype skits, we received very valuable feedback from nurses and staff who are working at the Palliative Care Unit.

Read about this feedback session here:

*Based on the feedback, we pivoted our idea to focus on developing connections between patients, caregivers and families.

Step 7: July 21, 2016: Created User Experience Maps

A: Tender Memento User Experience maps: (here)

B: SuperPal App User Experience maps: (here)

C: Combined Tender Memento + SuperPal App User experience Map: (here)

We decided to create a prototype showing the Combo User Experience Map.

Prototype Skit of “Wall of life

Step 8: July 24, 2016: Feedback gathering

We distributed the Tender Memento Brochure to the Mt. Sinai Palliative Care Unit and shared the website link.

Read their feedback here.

Step 9: July 28, 2016:  Iterate! Prototyping session- NYC OpenIdeo Chapter members met to carry out another prototyping session. We worked on the user interface for SuperPal App for two users: Volunteers and patients.

Main questions that we considered while prototyping: Read Here

Step 10: July 30, 2016: Live Feedback Session No.2NYC OpenIdeo Chapter members visited Mt. Sinai hospital for the second time to present our refined prototypes and to get feedback. Read their feedback here

Watch feedback session here and here.

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Next Step:

Arrange a meeting with an art-therapist at Mt. Sinai hospital. Get in contact with other hospitals/nursing homes to get their inputs.

Previously:

Here is the google doc showing our first refinement stage: (here)

Here is the google doc showing updates before entering the refinement phase: (here)

Lastly:

We would like to thank all NYC OpenIdeo Chapter members who contributed to this idea. This was a true team effort!

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

1. Interview nurses, doctors, patients and social workers.
2. Connect with volunteers to find out why they volunteer and how they connect with organizations
3. Connect with schools to develop sustainable volunteer programs within a creative curriculum.

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

We would welcome the opportunities to speak to nurses, nurse managers, social service workers, patients and families, doctors, organizational thinkers, human resources to gain more understanding of the end of life experience under different setting. It would be great to work with web developers and App developers to bring this vision to life!

Tell us about your work experience:

I am a journalist with experience in magazine editorial, documentary film and interactive storytelling.
After a focus in food journalism, I transitioned into an events and marketing coordinator at a restaurants and events hospitality group.

This idea emerged from

  • A group brainstorm
  • An OpenIDEO Outpost or Chapter

102 comments

Join the conversation:

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Photo of Kate Rushton
Team

I like the idea. Would there be a possibility for patients and their families to contribute to the service via crowdfunding? In the uk there are strict rules around giving gifts to people involved in patient care eg concerns over preferential treatment. This could be a nice way to donate in an anonymous and targeted way eg after the death of the patient as  a thank you for their care. 

Photo of Bettina Fliegel
Team

Kate,
Hi.  That is so kind, and a great idea! (As a medical professional it feels great to see support like this.)  In the USA programming is funded in a variety of ways: institutional giving - corporate and private donors, grants from foundations, government grants, medical society grants, non- profits etc. Why not crowd funding?

I listened to the Audio Interview with the Challenge Sponsors that Jim Rosenberg  posted during the Inspiration Phase. It was really interesting and a cool idea. (Thanks Jim R.)
https://challenges.openideo.com/challenge/end-of-life/research/q-a-with-our-challenge-sponsors  -  The first question the group was asked:  "Why work with OpenIDEO on this issue?"
Jim Hickman , CEO of one of Sutter Health’s philanthropic fundraising foundations, remarks that they are using funds that were donated by family members of deceased loved ones to support this challenge.  It seems a great way to support gathering of new ideas to address this issue. (This is an example of ways that families contribute to medical centers at least in the USA - to a foundation associated with one.  Kate - Are there foundations like this in the UK?  Also,  I wonder if there is a precedent for crowd funding as you suggest?)

Andrea Kang and team -  Not sure if you listened to the interviews.   There was one part right on point with your Idea here.   Question 2 - “In your view, what are some of the biggest challenges with the end-of-life experience we should focus on?   In response @DeletedUser , Chief Innovation Officer of Sutter Health, describes the emotional burden that this work has on medical providers.  

Photo of Anne-Laure Fayard
Team

Thanks Bettina. I listened to these interviews and I thought they were indeed insightful. Thanks for highlighting the point about the emotional burden. It was in fact one of the pain points we highlighted during our ideation session on Monday's NYC OpenIDEO Chapter  meetup. 

Kate, interesting idea to support the service (something we had not discussed).  Thanks!

Photo of Adisa Adeniyi
Team

Well done

Photo of Amy Holliday
Team

Love this idea and will want to work with this on you all as we move into the next phases!

Photo of Andrea Kang
Team

For Connecting Lives —It would be a thoughtful addition that when people are notified that Bob passed away they get a personal note he had a chance to write through the app. Or when you download the app, Bob and users can fill out a prompt that's like a profile, asking meaningful questions like: what is the biggest life lesson you would want to pass down, what was one of your most important memories -- so you get more than just a "notification" later down the line.

Photo of Lee-Jung Kim
Team

Thank you Andrea! That idea was brilliant! I changed Bob's story to include that feature.

Photo of Morgan Meinel
Team

Andrea Kang , Lee-Jung Kim and Team! It is truly wonderful to see your ideas continuously evolving. On behalf of the Mount Sinai Palliative Care Team, we are so grateful to have been a helpful component in the process thus far. Please let us know how we can be of further assistance and help during the refinement phase. Best wishes! :) 

Photo of Lee-Jung Kim
Team

Dearest Morgan Meinel What a true blessing it was for us to be in the same city that you and your great team work and bring meaningful changes to those you care for! We learned so much from you! We cherish each person's input throughout this challenge. We want to say "Thank you" from bottom of our hearts!!! The next step would be to meet with the art-therapist and also to get in contact with long-term care palliative care staff and social workers. Would that be possible? 

Photo of Morgan Meinel
Team

Dear  Lee, thank you for your kinds words of gratitude! It is mutual! I will be back at Mount Sinai this Thursday and will see who I can reach out to, including our Art Therapist. I will keep you posted! Best wishes to you and the team :) 

Photo of Joanna Spoth
Team

Hi Andrea + team! I wanted to quickly share some feedback we recently received from Rachelle Bernacki, who's on our advisory panel. She loves your idea because it represents real need and there's so much to dive into within this topic! She's also excited to see you collaborate with other ideas as the Refinement phase goes on. Perhaps you could highlight that in an attachment!

Photo of Lee-Jung Kim
Team

Joanna Spoth Thank you for sharing the feedback with us. What do you mean by "highlight that in an attachment?" you mean to highlight how we have combined "supernurses + Rainbow" = SuperPal & "moodmaster + sing me a song" = Tender memento? 

Photo of Brad Wolfe
Team

Hey Team, This is awesome...I'm interested in collaborating/combining on an idea in the challenge I'm supporting. I think there may be an application for nurses for a bead for Memento Mori bracelet.

It'd be awesome if you could check it out and let me know if you agree and how you could see that happening, or how we could test it.

 https://challenges.openideo.com/challenge/end-of-life/refinement/the-modern-memento-mori-using-artistic-expression-to-improve-the-end-of-life-experience-and-spark-a-broader-social-movement

Photo of Lee-Jung Kim
Team

Hi Brad Wolfe  we are going through a few different ideas right now (as I am writing this we are editing the updates). I think there is a very good fit between Memento Mori and Tender Memento program that we are presenting here under one of the pillars.  Perhaps you can take a look at one of our User Experience Maps and see how Memento Mori can be used by this user? 
https://docs.google.com/document/d/1JuJZNtTO1lxg5AtOFoFSMYr3AgDdIAtfjVMjA1eehw0/edit
Or if you have an User Experience Map, then we can try to see how our solution can fit to your user.
Thank you!

Photo of Lee-Jung Kim
Team

Hi team! We have made a great progress over last week. As you know we are visiting Mt.Sinai Palliative Care Unit next Saturday to present our refined prototype. If you want to check out the mockup website for part of this project, please check out http://leekimnyc.wixsite.com/tendermemento and give us comments!

Photo of OpenIDEO
Team

Congrats on this being today's Featured Contribution!

Photo of Lee-Jung Kim
Team

Shane Zhao will you be sharing the recordings of yesterday's webinar available for us to share with the rest of the team? Thank you!

Photo of Shane Zhao
Team

Hi Lee, there seemed to have been an issue with saving the recording — so we actually won't be able to share the recording. Sorry! Perhaps you might relay the lessons learned from the session? And let me know what your team might be interested in — maybe we can send over some helpful links to resources.

Photo of Lee-Jung Kim
Team

Hi Shane, we finally updated our post. Based on tonight's pop-up prototyping session, our ideas are being refined even further. We will update the post over the weekend after we go through the second feedback session at Mt.Sinai this Saturday. For the user experience map, we have created 7 different user experience maps. Do we share them? (I guess on the google doc?)

Photo of Lee-Jung Kim
Team

Andrea Kang Please add Richard Tang , Tiger Buchman , Janice Dean , Michael Glatts  to the team! Thank you!!!

Photo of Andrea Kang
Team

Done!

Photo of Lee-Jung Kim
Team

Andrea Kang  please add Tiger Buchman and Janice Dean  and Michael Glatts to the team. Tiger was our initial ideation group member and Janice started this week during the prototyping pop-up session and worked on one of the ideas that was presented during today's feedback session at Mt.Sinai. Michael has been coming to the various pop-up session and working on one-two pillars... I will add all the details to the google doc. Thanks Andrea!

Photo of Shane Zhao
Team

Awesome progress Andrea, Lee-Jung and team! In the Refinement phase, is there a specific area of Nurses Matter Too that you'll plan to focus on within the limited timeframe? E.g. will you be focusing on fleshing out and prototyping one of the pillars or will you be focusing on diving deeper into just one of the ideas per pillar? It's usually good to go deep than to go broad during Refinements:)

Also, here's a helpful Tip: to activate links in your post, hit the Edit Contribution button at the top of your post . Scroll down to your Full Description field. Select the text you'd like to link, hit the link icon in the Rich Text Editor at the top of this field and enter your link. That way everyone will be able to check it out easily, straight from your post.

Photo of Lee-Jung Kim
Team

Shane Zhao This may sounds a little crazy, but for now, we have three different teams still working on each of three pillars (4-5 people in each team). The idea under each pillar is going through its own prototyping/testing/refinement and I will encourage them to go deep in each one-( it is difficult to have all 15-20 people to go deep on one idea that they were not part.) If one of the teams drop out then we will let that pillar to disappear as well. As long as all three teams are going strong, we would like to encourage them to go deep on their ideas (some ideas were combined and some ideas disappeared). We will be posting our updates soon. We are waiting on the clearance from the hospital team to post/or not post the video feedback that we took from yesterday's feedback session and creating the user journey maps.

Photo of Kaiyi Liu
Team

Hi! I would love to join the team! I am part of the Wearable Emotional Clock Team.

Photo of Andrea Kang
Team

done!

Photo of OpenIDEO
Team

Welcome to the refinement phase Andrea! Here are some key questions and milestones we encourage from all ideas in the Refinement:

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 Kathy Anderson
Team

Love these ideas. Any thoughts on how nurses and anyone else in the healthcare team might honor/remember those who have passed through rituals/celebrations/memorials?  Some process/event that might includes loved ones?

Photo of Lee-Jung Kim
Team

Kathy, you mean to honor those who passed away under their care? Morgan Meinel had mentioned to me that at Mt.Sinai they have a ritual that every week they have a gathering with Chaplain to remember those who passed away that week.  I wonder if we can make that ritual to be something that brings joy to them because they had done their best to make the end of life experience to be dignified and peaceful...

Photo of Morgan Meinel
Team

Hi Kathy! I'm so glad that you mentioned the importance of honoring and remembering those who have died through memorials and such, and including their loved ones. At Mount Sinai Hospital, we have many different ways in which we honor our patients. Lee-Jung Kim had mentioned our weekly remembrance of everyone who had died that week (which is limited to hospital staff), but we also offer two memorial services (in Spring and Fall) for the family members and loved ones of our patients who have died on the Palliative Care Unit. I think it would be wonderful if all medical units within a hospital setting offered something to similar to what we do here at Mount Sinai. These memorials always offer a profound sense of connection, gratitude, and respect and remembrance for those who have died. It also offer a way for our community to gather and support one another. I wish to see this implemented in all healthcare settings. Thank you for your thoughtful contribution! All the Best :) 

Photo of Lee-Jung Kim
Team

Andrea Kang , can you please add Magdalena Kelleher to the team? Thanks!

Photo of alexandra
Team

LOVE the entire thread of this...two quick things come to mind...1) have you followed Cleveland Clinic's work with 'Code Lavender'?  Worth a google...the idea being the most important code we can call in a health system is when the care team members themselves are having a hard time... this is a great overview:  http://www.huffingtonpost.com/2013/12/02/the-amazing-way-this-hosp_n_4337849.html  Beth Israel Deaconess Medical Center (a Harvard Teaching Hospital based in Boston) has also been doing work starting a movement making the argument that a lack of respect should be considered a Never Event - good stuff on that work here... https://www.bostonglobe.com/metro/2015/04/03/doctors-need-treat-their-patients-with-respect/XUuE6oyXGz2dpyVNoRx6LJ/story.html  Sending good energy to your beautiful work! 

Photo of Lee-Jung Kim
Team

@alexandra Thank you for your input! I was informed of Code Lavender on another post and thought the same thing! I have not heard of "Never Event", but will definitely check it out! If you have any other ideas, please send it our way. We would love to hear from you!

Photo of Morgan Meinel
Team

Wow! Bless you for creating this innovative and transformative plan/program for nurses! I am sincerely at my best as a nurse when I feel like I'm taking good care of myself. As rewarding as our work is, it can be quite emotionally and physically taxing. Every aspect of this idea would be immensely helpful. I especially like the idea of doctors shadowing nurses, and also your idea of a learning and development department. Meditation rooms, too! I'm on board. 

This is extraordinary! This idea is well constructed and truly has the potential to change the entire nursing culture, in a very beneficial way that allows us to take care of ourselves and our patients to our full potential.

Thank you for taking nurses into consideration! :) 

Photo of Anne-Laure Fayard
Team

Morgan, thanks for your feedback and great to hear that our idea resonates with you and would support your in your work. Anything you suggest that we need to think of in terms of implementation? 
Our idea for the doctors shadowing nurses was to address issues of power and hierarchy (we heard and read about). Is this why you like the idea?
As for the learning and development, I guess you're referring to the design thinking workshops. I  know of some hospitals experimenting with training their medical staff in the design thinking approach. We thought it would be a great way to empower nurses as they will become problem solvers. It will be also away to acknowledge their expertise. 
Thanks again for your insights! They will help us refine the idea. 

Photo of Morgan Meinel
Team

Al, thank you! Regarding doctors shadowing nurses - I have the good fortune of working with many extraordinary palliative care physicians, but not every nurse has this experience, especially in other fields. It would give them better understanding of the magnitude of the work we do, and that we do indeed have a lot of autonomy in our profession. Nurses also tend to have very empathetic, compassionate, and intuitive qualities about them - doctors could definitely benefit from being witness to their interactions with their patients. And it could be potentially a relationship of reciprocity - where both nurse and physician benefit from the experience. Doctors have much knowledge and experience to offer the nurses as well. 

I especially love the idea of having meditation and relaxation rooms available on the unit the nurse is working on. A place of sanctuary they can go where they won't be disturbed for 10 minutes. I love that. How restorative that would be if that was available. Nurses are constantly surrounded by the energy of other people - sometimes for 13 hours straight, without break. Just 10 minutes in a quiet and peaceful environment would be tremendously helpful. I think I like this aspect of the idea best. 

Something to consider - as far as design workshops, other related projects, etc. - many nurses (myself included) don't have much time or energy to return to the hospital on our days off, especially after working a series of days in a row. Most people want to spend intimate time at home with their family/friends, etc. and enjoying the time away from the hospital/institution. However, if perhaps there was some kind of incentive, they would be more inclined.

As far as implementation, speaking to the nurse managers directly could be a helpful approach. They could help mediate such a project. Incentives for this project that could be discussed would be the potential of higher retention rate, less sick calls, less work burnout, etc. Something like this, perhaps, could be a really great bridge to getting within the hospital setting.

I hope this helpful. I would still be happy to interview if that would be beneficial for the project. This is excellent :) Could you please send me Lee's email again? Thank you so much!

Photo of Anne-Laure Fayard
Team

Morgan Meinel thanks so much for the response.
Very useful to know about doctors and I agree it should be thought as a relation of reciprocity.
For the design thinking workshops, our team did not go into the details, but for me this would not be an extra-load but training time instead of working time. This will then allow nurses to start thinking of the issues they thinking differently. I assume you have some regular meetings (maybe weekly) to discuss the work and some issues. Thinking of these issues in a more creative manner as things that can be solved might be useful. 
While you're ve already provided a lot of great insights, if you have 20 minutes for an interview, that would be wonderful. 
I can't figure out the private message function :-( but hopefully you have access to private message or can find the text of the message in your email. If not, send me an email: al_fayard@mac.com and I'll send you her email. Cheers, al

Photo of Lee-Jung Kim
Team

Morgan, I enjoyed our interview and I am grateful for your sharing time, insights, personal stories with me and with the group.  

Photo of Shane Zhao
Team

Amazing! Lee-Jung Kim will you and your team be developing this idea  specifically for nurses and care-givers in palliative and hospice care? We're curious to learn how this idea will be addressing the unique needs of nurses (and other care professionals) who are dedicated to providing for patients going through the end-of-life experience. Perhaps there may be different versions of this programs depending on care that is given?

Photo of Lee-Jung Kim
Team

Shane Zhao We will not be limiting this idea to palliative and hospice care. However, we will be focusing on the care-givers who have to deal with death (could happen in the emergency room, etc.)
It is a great idea to give different variation of this program! (after ideation and before prototyping)- I am editing my answer here: We will focus on palliative and hospice care for prototyping, but I think this idea can be applied to other areas!

Photo of Morgan Meinel
Team

Lee, I really enjoyed interviewing with you - thank you so much for the opportunity! 

Photo of Lee-Jung Kim
Team

Morgan Meinel What a blessed 1/2 hour that I had with you! Thank you for everything.

Photo of Morgan Meinel
Team

Thank you!!

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Hi Lee, Shane and everyone.

Once the group posts the Ideations based on their interviews I guess we will learn more about the environment that the idea will be built for.
One way to think about this in terms of healthcare is to think about physical spaces a caregiver works in vs. working with individual patients across a system.   So a nurse or doctor might work in palliative care, in a hospice, which might be free standing, or part of a hospital complex, or as part of a home visiting program.  They might work in an outpatient office, offsite, or within a hospital complex, an ER in a hospital, or on an inpatient unit or ICU/ both within a hospital.  I would also think about caretakers in nursing homes.  There are doctors, nurses, therapists - PT, art, music etc. and a variety of support staff.  As the challenge brief says many are dying in nursing homes at the present time.

If you are designing an intervention or program for a particular unit this might be serving staff that work with individuals at a particular time along their path, or very end of life.   Along the way these patients may have been cared for by oncology nurses, as an example, for months, or years.  They may have relationships with staff for a long time.  In my experience when relationships are in place staff may continue to check in with patients at the end of life, visiting them in inpatient units or hospice (where they had most oncology care in an outpatient chemotherapy unit for example).  Primary care doctors may have known patients for years and have cared for them, helping them with decision making, referring to specialists, and perhaps referring to hospice, but they may not be providing direct care at the very end.

If you are designing a program for a healthcare system, for example Sutter, then programming might extend to caregivers who work in a variety of settings within that system.  I guess it depends on what the idea is and where staff might access it most conveniently?  It might depend on whether the idea will service a group that does the same set of tasks, maybe work together?  Lots of variables.   Lots of potential!

Excited to see your updates when you post them!

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Thanks Bettina for this super thoughtful comment! You are completely right to highlight the variety of spaces (physical and institutional) nurses work in. You are also right to highlight the multiplicity of actors who might also be potential users of this program. My guess is that the team has been refocusing their idea on palliative care based on their interview with Morgan. Yet, when it comes to refinement and prototyping they will definitely have to choose how to design for a specific unit. My personal stance is to start with a specific user group when it comes to prototyping and testing an idea and then see how you can expand to other groups.  
As you said lots of variables and lots of potentials! I'm really bummed to not being able to join the  upcoming prototyping session! :-( Looking forward to the updates and next steps.

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Hi all,Shane Zhao Bettina Fliegel Anne-Laure Fayard although we began our ideation work on Sunday based on the empathy interview with Morgan Meinel , five ideas that came out (which will be refined through prototyping session tomorrow) can be applied in many different settings. For example, "meditation with patients and family" as part of "strengthening mind/spirit/community" can be applied in many different ways. But YES, we will tackle it first with hospice and palliative care setting. 

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Thanks!  Having many years of experience in different settings and locales I figured I could share some info on this.  When you say "design for a specific unit" do you mean a unit in a particular institution?  The idea of a unit might also cross spaces.  

I would love if they would also think about designing for oncology nursing units.  Their work is so intense and they may know patients for long periods of time who may ultimately die.  It is tough psychologically.   A close friend was an oncology nurse.  She had the personality for it and gave it 110%, even connecting with patients during her own time if she felt they needed attention and care.   Ultimately she left the field.  There was a final case that broke her I think.  She was just amazing!  

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Lee-Jung Kim thanks for the clarification. You are right that the ideas that came up from the Sunday  ideation session address several groups of users. BTW, you might want to post each of these ideas as a separate idea on the platform.

Bettina Fliegel thanks again for sharing all these insights. Thanks for the suggestions about oncology nurses. That is definitely an important context and group of users. The story of your friend was very much what inspired our original brainstorming. I'm not sure how much we can design for different groups of users in the context of this challenge... However, the more I see this idea evolving the more I am thinking of inviting DFA NYU Studio students (including nursing students) to consider this design challenge in the Fall. I'll definitely contact you if we were to explore this path. 

In the meantime, I'm looking forward to seeing this group of NYC OpenIDEO Chapter developed further their ideas and prototype them. Lee-Jung Kim thanks again for taking the lead on this! Wonderful enthusiasm and inspiration!

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Anne-Laure Fayard While I was having a discussion with Andrea, we thought all five(four if you combine two ideas together) can fall under three pillars of the program that we developed under "nurses matter too"- Recognition, empowerment, rejuvenation. After the prototyping tomorrow, I will post each of them separately and then perhaps link back to "nurses matter too". Thank you for your kind guidance!

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I don't recall sharing the story about my friend at the meet up.  Funny…..  Happy that it inspired brainstorming!  

 That is  cool that there are nursing students in your NYU Design Group!

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Lee-Jung Kim agreed that they could all fall under the umbrella of this idea but some seem also quite specific and could gain from being on their own (while connected to other ideas) to get feedback from the community. I guess you will know more after tomorrow's session! Really exciting! :-)

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Bettina, we don't currently have nursing students at DFA NYU Studio but I've done a DT session in course at Nursing last year and I'm in contact with people developing a DT curriculum within the school. My plan is to reach out to students in the fall and invite them to join a project team. 

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I am glad I could participate on Thu night workshop regarding the topic I might face in the future since I am on the path to be a physician. 

ps: could I also be added to the team?

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Welcome to the community of amazing and fun loving Design Thinkers Johnny Lv ! Looking forward to reading your team's contribution - "bring me rainbows..."

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Johny, great to seeing you added to this team and looking forward to reading your idea. Make sure to "build upon" this idea when you post so that all team members (including me :-) ) can be informed of your posting.

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Andrea Kang  Thank you so much for the awesome updates! 

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Lee-Jung Kim Hi! :) Please add me to the team. :) 

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Andrea Kang Thao-Nguyen Le (TN)'s team is the one that presented the "clock of emotions" at the end of yesterday's prototyping session. Could you please add her to our team "nurses matter too."
TN, please make sure to post the "Clock of emotions" as a new idea. Please remember to include the video of your skit showing how your idea can play out in the end of life care scene. Thank you!

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Lee-Jung Kim done. :) I thought the skit wasn't as clear so I also posted the video explaining the clock and the emotions. Here's the link to the idea:

https://challenges.openideo.com/challenge/end-of-life/ideas/wear-your-emotions-on-your-sleeves-to-forge-connection-intimacy-via-a-wearable-emotion-clock-or-device/comments#!c-db21be116f0463038c59570c8f2edcf3

I didn't see Kaiyi on this website yet to add him as a team member

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Thank you Thao-Nguyen Le !

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May I also be added to the Nurse Matter Team as well.

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Andrea Kang Thank you for the update! We are now going to build prototypes for each of the three pillars that you described here and we already have more than 16 people for tomorrow's prototyping session! (update: we now have 18 people signed up for the prototyping session tonight)

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Hi all.  Looks from the photos that you were very busy and productive!  Congrats on such a great effort!  
Reading the updated post now, where you describe caretakers as having vulnerabilities and feeling lost, might you clarify and give context to this statement, as at least in my experience this is related to particular events.  It is not routine.  Perhaps providers doing end of life care regularly feel differently? What do you mean by celebrating this?  
I think resilience can come from being connected to colleagues in meaningful ways and also to others outside work, having the possibility to reflect on work, and also participating in activities that can help to release stress are important.  

Looking forward to hear where your session took you with the prototypes!

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That is a great point. I added a little bit that helps clarify. Once the prototype idea posts come in, we'll update again!

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Andrea Kang Lee-Jung Kim Great updates indeed. I think that there might be a way to show better the potential power of vulnerability as a strength and a source of empathy that can help care takers support better their patients. Bettina Fliegel great clarification points in particular on the non-routine aspect. I also like the idea of thinking of resilience and how it plays out. The importance of community and reflection are two great points. 

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https://challenges.openideo.com/challenge/end-of-life/ideas/footprints
Andrea Kang Jocelyn  Page Whitmore  Anne-Laure Fayard Bettina Fliegel What do you think about incorporating the footprints idea to our programing? A very intereJim Rosenberg  had a great idea of using a map to show who was at certain place... "A map-based app that shows all the people who have been here before. Explore the lives that have taken place where you live or travel."

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I'd love to know more about how this app could help support a culture of provider self-care. The potential to experience feeling surrounded by a past/present community rooted in one's present location has potential...please elaborate! How would the app help users tell the story of their lives as providers? How would users create their story on the app in order to connect with others? A series of essay questions? Short videos of themselves where they answer questions about how they keep themselves restored and able to give generously in difficult care contexts (or the difficulties in doing so)?  

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Page Whitmore I was thinking of this not as an app (although that was what was proposed) but more of looking at what does that app trying to solve? It is trying to make you feel comfortable taking the journey. How can we create an environment where our caretakers, our patients, our families can feel less afraid to take the journey? 

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Ah- interesting. That is indeed the question. Looking forward to seeing what you guys come up with in the prototyping round on Thursday! 

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Page Whitmore We are super excited too! So far we have Asha, Lorain, Andrea, Jocelyn, Tra, Naman, Diane, Stainslav, Luti, and a few more (that I don't have names yet). My hope is that we get about 16 people for the prototyping night then we can divide the group to tackle all four ideas that we generated (idea 1 and 5 combined). Woudln't that be wonderful?

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Sounds amazing! I will spread the word. 

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Page Whitmore Please do! I actually reached out to the company that I gave DT workshop and asked the participants to come and join this fun! Anyone is welcome! Ah.. there is a pre-requisite: You must know how to fold paper and comfortable taping cardboard boxes!

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All sounds great! I will keep that prerequisite in mind;) 

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This is a great idea Lee. I have sent the invitation to all the NYC OpenIDEO chapter community. I will also share with DFA NYU. 
I like the idea of having different groups prototyping the ideas. Based on my experience doing several rounds, you just want to make sure to clarify the focus of the session and also provide enough feedback on each of the ideas so that people prototype rather than engage in a new brainstorming. Just my 2 cents!

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Lee-Jung Kim  I love the idea of the journey and of taking a systemic view on the end of life experience. It is crucial to see the big picture.  However, per Bettina's comment (in another thread), we also need to make sure that we focus on a specific users' group and context in order to be able to develop an idea that can be implemented rather one that is too generic.  What do you think?

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Certainly! We will do the prototyping for the Palliative and hospice care, but I think the user will include both nurses and doctors. 

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Thanks Andrea for adding me to your team and for posting this idea. It was great meeting you at our NYC OpenIDEO chapter! I hope that the interviews planned for the coming days will provide us more insights.
This is an inspiration I mentioned during our meetup: https://challenges.openideo.com/challenge/end-of-life/research/i-m-a-doctor-preparing-you-for-death-is-as-much-a-part-of-my-job-as-saving-lives
You might want to add it as an inspiration.
Bettina Fliegel thanks for accepting to do an interview with our team. We'd love your comments on the idea: as always work in progress :-)

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Love the idea, and am excited to be interviewed!  Thanks Lee-Jung Kim  for contacting! me
Planning to share the idea with friends in the medical community, and post a comment soon!
Bettina

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Wow, this is so amazing to see! Please do share the Bettina's interview with us Lee-Jung Kim and Andrea Kang ! Our Community Advisor Morgan Meinel would also be an amazing person for you to speak with. Morgan is a Palliative Care Nurse at Mount Sinai Hospital in NYC. Keep us posted on this!

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Shane Zhao , We already contacted Morgan and she agreed! :-) We have also been in touch with her  about our NYC meet ups. Morgan Meinel here is the idea I mentioned in my message. We'd love your feedback. If you could also follow up with Lee-Jung Kim (with the email I gave you), that'd be great. As Shane mentioned I think your insights would be really useful. Thanks a lot! 

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Thanks Anne-Laure! That's so great to hear:)

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Hi all.
I like the 3 categories you have chosen to design around.  Recognition, Rejuvenation and Empowerment.   
In terms of empowerment I think the idea of design thinking courses is great.  Using design thinking perhaps they can come up with ideas on what they would like to do to empower and rejuvenate their professional group.  I think when it comes to "services" within a hospital, or out patient setting, these will always include a team that includes other staff members who do a variety of administrative and clinical tasks.  
 In terms of rejuvenation I might add reflection.   Reflecting on the work, either broadly, or what comes up during one shift can be extremely helpful and therapeutic.  One way to do this is through writing.  I know that the Columbia University Narrative Writing Program has facilitated workshops with ?oncology nurses at Bellevue Hospital/NYU in the past.  I attended a session that the Narrative Medicine Program gave a few years back.  It was an intro to what their department does and they mentioned holding workshops with nurses in which a group goes through different writing exercises and then they share their work.  Something like this can be a way to express emotions in a safe space with others who have similar experiences.  In my experience opportunities to recognize the emotional burden formally, to reflect on situations that have been particularly difficult for whatever reason,  to share experiences with others in the team,  and to perhaps grieve, are not very common in the medical work setting.  
There was an interesting research post written by a palliative care physician in the UK, Becky.  The physician remarked that she now has monthly supervision sessions with another clinician.   She remarked that without these she would not be able to do what she does.  This is the first time I have heard of supervision sessions in this context and I think it is a great idea.   (I just posted a comment on her Inspiration Post to ask more specifically what purpose the supervision sessions are designed for.  Curious to learn more.)
@https://challenges.openideo.com/challenge/end-of-life/research/the-challenges-of-talking

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Shane Zhao and Anne-Laure Fayard , thank you so much for keeping me in mind for Lee's project! I look forward to participating and helping in anyway I can. All the Best! :) 

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Hi Bettina, 
thank you very much for your thoughtful comments (as always!). Glad you like the design thinking workshops. I really love your point about reflection, and in particular your suggestion about writing. I have done quite a bit of research on writing and its reflective capability. There have been a lot of studies showing the positive impact of reflecting in particular when facing emotions. I think it's definitely something we should consider. I will have a look at the post. Thank you for sharing!

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This might interest you and the others reading on this post.
http://sps.columbia.edu/narrative-medicine/events

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Thanks for sharing! I had a quick look and I find the idea really interesting.
I'll look into it more in details soon.

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Sure! (and thanks for the positive feedback on the comment!)
There is a Narrative Medicine Program at Columbia University.  ( mentioned above briefly)
 They host a speakers series.  I saw Oliver Saks speak there which was wonderful.   The link takes you to the series.

The Columbia program offers a Masters in Narrative Medicine.  I contacted the program a few weeks ago as I was reminded of it while reading posts on this challenge.  I had some great emails the Program Director.  They are starting an online Certificate Program this year to accommodate the many folk who are interested in this work, and learning skills.  It will serve people all over the world.  One does not need to be from a medical background to do this work, or get this training.  It is an interesting community. 

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So we (Andrea & Le) had an amazing interview session with Bettina yesterday. Where do I share it? I also interviewed Morgan today which was equally amazing. We refined our POV statement and redid empathy map and ideation today. How do I share all that?  a bit confused about how to share... ^^

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Lee-Jung Kim great to know about the interview session. At this point in the process you can't share it as an interview (this was during research phase). However, when updating the idea or in posting a new idea, you can refer to your research (different interviews and insights) and the POV statement / how might we question that emerged from this phase. Hope this helps! 

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Anne-Laure Fayard Thank you!!!!
I just sent an email to all who had contributed (interviews and ideations).
Does Andrea Kang has to post the refined POV statement?

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Lee-Jung Kim It'd be great if Andrea could post the updated POV / How might we.
Also I replied to your email: I think it'd be great if you could share the interviews' main insights and a summary of what you did on our NYC OpenIDEO blog. You've done such an amazing work. I think it'd be great to have it accessible to all. Thanks!

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What is a POV statement? 

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Bettina Fliegel , according to Stanford's D.School- "A point-of-view (POV) is your reframing of a design challenge into an actionable problem statement that
will launch you into generative ideation. "
For our project, as you saw in my email, it is: How might we understand, accept, and celebrate our care-givers' vulnerabilities and use those weaknesses to empower them to bring joy to those who are at the end of their lives they are caring for and to themselves?
(* Did you know that all super heroes have weaknesses that make them the real superheroes?)

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Bettina Fliegel POV = point of view statement...  (see for example: https://dschool.stanford.edu/groups/k12/wiki/41a18/POV_.html) others also call it a "how might we ...?" question

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Shane Zhao Thank you so much for recommending me! It was a great interview with Lee! :) 

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Anne-Laure Fayard Had a discussion with Andrea last night and we will be updating the POV statement as it had changed a little after we conducted the empathy interview. I think the spirit is the same.

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Having seen the hard work and little recognition that nurses receive firsthand as a family caregiver, I fully support a concept that would support nurses in a meaningful way. Definitely think the empowerment angle is crucial; nurses have integral feedback that could help hospitals runs better, but from what I've seen, some nurses feel disenfranchised by the corporate nature of many hospitals who don't consider nurses to be thought leaders.

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Joy Johnston Thank you for your input!
How interesting to hear that many do not consider nurses to be thought leaders. I think it is the same for the families as well. Sarah and Bettina Fliegel who we interviewed for the emapathy mapping emphasized how important it is to get family involved in the caretaking- especially in pediatrics. I wonder if we can develop some thought leadership program together with everyone of them involved- doctors, nurses, patients, family. It would be true team effort! And we can celebrate the successes together, we can take the journey of discoveries together, we can share the sorrow and pains together.

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Hi Sarah, Bettina Fliegel , and Morgan Meinel , and all who have been contributing to this team, Over the last 5 days last week, we interviewed three wonderful care-givers in NYC to understand the end of life care from the care-giver's perspective and we have learned so much. What was striking to me while I was going over the notes and even conducting the interviews was that all three had shared something very important thing that is not adequately addressed in our medical education.


That is:
Our care-givers are vulnerable to the feelings of loneliness, helpless, and "lost".


Our ideation session yesterday centered around that problem. We expect our care-givers to be the candle that burns to brighten up the room. But what happens when the candle is completedly burned out?
The room goes dark again and we need to look for another candle. Is there a way that we can let the candle to continuously recharge itself and create even brighter light that create more beautiful world?


We "met" three wonderful care-givers in New York City:
Morgan- a palliative hospice nurse who has been in nursing for 9 years.
Sarah- Director of Pediatric Palliative care at a children's hospital in NYC.
Bettina- Pediatrician working most recently with teens at Juvenile Justice Center

We were amazed to realize:
The care-givers are vulnerable to the feelings of loneliness, helpless, and "lost".
They have been fighting not only the deases but also their own vulnerability alone.
Challenge: (Our Point of View- POV statement)
How might we understand, accept, and celebrate our care-givers' vulnerabilities and use those perceived "weaknesses" to empower them to bring joy to those who are at the end of their lives they are caring for and to themselves?
(* Did you know that all super heroes have weaknesses that make them the real superheroes?)

To this posting, our interviewees replied:
Bettina Fliegel wrote: Interesting I don't necessarily feel that vulnerability is a weakness.
What do you all think?
Anne-Laure Fayard wrote: Hi Bettina,

thanks for your question. I agree for me vulnerability is not a weakness and I did not understand that from Lee's email (although she did use the word weakness).
Lee-Jung Kim wrote: Bettina,
I totally agree!
It should not be!
However, in today's world, it is being viewed as a weakness. When a care-giver feels lost and not in complete control of your patients' care and there is nothing she/he can do to help, you feel alone and vulnerable.
Especially the young ones who had not been given the armor to protect themselves from exposing themselves as a vulnerable one and ask for help.
That feeling of lost, alone, helpless- being vulnerable- is perceived as weakness.

Because we as a society look for a strong care-giver - one that has all the answers, one who never doubt.

However, the true strength comes from being open to your pains and sorrows and strengthen yourself mentally and physically....

Bettina, I think you also went through this kind of vulnerable period in early years when you mentioned about a young girl dying and you didn't know what to do and all you could do was call your friend....

Does that make sense? If not, perhaps you can help me reframe?
Bettina Fliegel wrote:
Yes it makes sense from the perspective you are putting on it from the outside. From my perspective, as me a person, and me a doctor, I see "vulnerability" as being open and human and that is a strength. It is hard and the need professionally for me as a young doctor was for others to take notice, step in, and help process what had happened. That was missing for me on many occasions.

I feel that what was missing and what is still missing in my field is connection, connection to others in ways that are meaningful around the work in the moment and also later. It is not always missing but it is definitely not there enough. We are "busy workers" and time for connecting is not built into our day or the system. Processing things can only make us better at our jobs., and more connected to each other which I think creates an opportunity for each to be more resilient and to feel part of a caring community. This is why I suggested writing, particularly bringing groups of team workers together to do this, as I think it creates the opportunity to reflect and process.

 I probably have more thoughts on this and as the day goes on I will make a note to myself to jot things down if they come to mind. I need to run now to get started on the outside day!

One last thought - we spend much time caring and thinking about others. Self care is very important as well. How can we help ourselves, together?

Have a great day all.

What do you think?

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and to this Morgan Meinel wrote:
I agree with Bettina - I don't necessarily feel that vulnerability is a weakness, but rather a very intuitive and empathetic quality of a caretaker. Lee, you're right - these perceived "weaknesses" really are strengths, as they allow us to connect more intimately with those people we are caring for. However, I can appreciate and completely understand how "society" or at least within a healthcare perspective, this quality may be perceived as not so desirable. When it comes down to it, I would prefer a caretaker (doctor, nurse, etc) that could relate to my suffering and be present with me - while at the same time trust that they are competent to deliver skilled care. does that make sense?

There are many times in my career where I have felt vulnerable, sad, or helpless over a certain situation beyond my control. I think it would be important for our institutions or workplaces to normalize this process for healthcare professionals, as I imagine this must be a universal experience. Extra support and space to be able to communicate difficult cases, etc. would be very helpful.

Thank you so much for this opportunity! I feel hopeful and optimistic that something very beneficial may manifest from it.


Bettina Fliegel  wrote:
Hi all.
Thanks for sharing your thoughts Morgan. I agree that this is probably universal. I also think that it is more acceptable for some specialties to show their emotions than for others which might itself be problematic on some levels. How does the pain then manifest?

I replied to Lee earlier this am but did not share with the entire group. I think I felt a bit shy. My sentiments were similar Morgan.

Lee - Can you forward the email I sent this am in response to your email below?
I don't have it on my phone email. The one where I expressed how I felt about "vulnerability?" 

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Congrats on this being today's Featured Contribution!

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Erica Gibson I would love your feedback on this idea based on your work as a medical ethnographer. Thanks!