Prometheus - End of Life Care
User Experience Design - 6 weeks
With a partner, redesign (or create a new) experience of your choice. Your final solution must have a technological/digital component. Solution may be a product, a process, a system, or a combination of all these.
Death isn’t the opposite of life, but a part of life. By understanding how to face and cope with death, we may be able to gain
insight into how to live better.
- 42% of Americans have had a friend or relative suffer from a terminal illness or coma in the last five years. (Pew Research, 2006)
- 90% of people say that talking with their loved ones about end-of-life care is important.
27% have actually done so. (The Conversation Project National Survey, 2013)
Both my project partner and I have personal experience with family members passing away or is dying. Watching our families
going through this difficult journey make us think, there must be some way to make it even just slightly better.
Death is a really broad topic, and each terminal disease has its own journey. We decided to narrow down our scope to focus on
Cancer is the second leading cause of death globally, and is responsible for an estimated 9.6 million deaths in 2018.
Globally, about 1 in 6 deaths is due to cancer. (World Health Organization)
- Approximately 38.4% of men and women will be diagnosed with cancer at some point during their lifetimes.
(National Cancer Institute, based on 2013–2015 data)
We were able to get in contact with a palliative care doctor with her specialty in cancer patiens at Rhode Island Hospital,
who generously provided us opportunities to shadow her during her shifts, and meet with the rest of palliative care team.
Reading online cancer forums to understand the experience of being a terminal cancer patient or caretaker, emotional
and practical difficulties that people face, and existing coping strategies.
Shadowing a Palliative Care Doctor
Insight to the palliative care, how it supports patients in practice, and what limitation it faces at the moment.
Interview with Experts
0.5 – 1hr interview, 1 psychoanalyst with experience of working with parents of children with cancer,
1 ICU doctor, and 1 palliative care doctor.
0.5 hr concept validation with the palliative care team at Rhode Island Hospital.
Around 10 palliative care doctors with different focuses
Period of Waiting
- Before diagnosis, patients and
families may have to wait for
months between appointments
for testings and imagings.
- The long wait and uncertainty
creates a lot of anxiety and fear.
Finding the New Norm
- Treatment varies on an individual
basis, and it is important for patients
and family to align their goals.
- Many find caner, especially the side
effects, disruptive to their life,
causing confusion and exhaustion.
Making the most of Remaining Time
- When the prospect of treatment does not balance
out the side effects, people may cease aggressive
treatment to focus on quality of life.
- It is an extremely difficult decision.
- Sometimes family members start anticipatory
grieving, and become unable to enjoy the
remaining time together for the emotional pain.
*Quotes come from an online cancer forum. Because of the sensitivity of the subject, we did not interview any cancer patients and families other than our own families.
Suggestions for Coping
Express your love, care and appreciation for each other.
- “I was able to look after her and talk and tell her how much I love her. I take some comfort in that.”
- Discuss your hopes and wishes.
- “I have already lived through my first wife dying of cancer, so I know what it's like.
It sounds harsh to say I'm not going to go through that and the sooner it's over, the quicker
everyone can heal and get on with a new life.”
- Make the best of your remaining time together.
- “What I'm finding most difficult is that he's now just sitting, waiting to die.
Me sitting on my only time off from work watching him die on the couch isn't what I want to do,
nor do I want to remember him that way.”
Focus on Quality of Life
Focus on the present
- “I tried not to focus on the fear of how I will feel when she has passed – when I was doing that
it was so distressing that I could barely function.”
- “Sometimes we just hold hands and she sleeps and I read my book next to her bed and
life seems sort of normal for a while.”
It is easier said than done
- Many of us might not be the kind of person who says “I love you” all the time. It is an extremely
difficult conversation if your loved-one is willing to let go but you are not ready. This emotional
pain can take the better of us and inhibit us from enjoying our remaining time together.
Who is involved in this journey?
MVP – Hospice
No barrier to entry
Create a point of focus besides anticipatory grief
Facilitate conversations amongst family members to celebrate the patient’s life
Future – Palliative Care
Introduced at first meeting with palliative care doctor
Provide comfort and distraction during treatments
Ease patients and family into goal-alignment conversation
Facilitate expression of love and care for each other
Partner - Cyvian Chen, RISD ID + Jewelry ‘21
Disruptive Technologies with Lusine Corsini - Spring 2019