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?”
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?
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 Memento& SuperPal 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:
We designed the mock-up brochure for Mt.Sinai (particularly for children patients) Palliative Care Unit to introduce Tender Memento Program.
Different brochures will be designed for different populations (i.e. nursing home, palliative care unit in hospitals, home palliative care, etc.).
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:
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
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:
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.
“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.
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:
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:
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.
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.2- NYC OpenIdeo Chapter members visited Mt. Sinai hospital for the second time to present our refined prototypes and to get feedback. Read their feedback here.
Arrange a meeting with an art-therapist at Mt. Sinai hospital. Get in contact with other hospitals/nursing homes to get their inputs.
Here is the google doc showing our first refinement stage: (here)
Here is the google doc showing updates before entering the refinement phase: (here)
We would like to thank all NYC OpenIdeo Chapter members who contributed to this idea. This was a true team effort!