Prometheus - End of Life Care — Jillian M Cai Design

Prometheus - End of Life Care

User Experience Design - 6 weeks

Assignment:
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.

Why Death?
Philosophical Importance

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.

Social Importance

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)

Personal

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.

Why Cancer?
Feasibility

Death is a really broad topic, and each terminal disease has its own journey. We decided to narrow down our scope to focus on one disease.

Social Importance

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)

Resource

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.

Research:
Online Forums

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

Patient Experience

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
Communicate

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.”

Build Memories

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?