Lecture Notes - Finding Meaning in Death and Healthcare

Introduction

• Speaker's personal story: experienced a near-death electrocution accident in college.
• This incident marked the beginning of the speaker's relationship with death and journey as a patient.
• Became a hospice and palliative medicine physician, experiencing healthcare from both sides.

Dysfunctions in Healthcare

• Healthcare is often designed with diseases, not people, at the center; hence, it is badly designed.
• Nowhere is this more evident than at the end of life, which is deeply impactful and has no do-overs.
• Call to bring design thinking to the experience of dying to improve it.

Suffering: Necessary vs. Unnecessary

• Most people fear suffering in dying more than being dead.
• Important to distinguish between necessary suffering (a natural part of life) and unnecessary suffering (created by systems).
• Caregivers should focus on relieving unnecessary suffering.
• Palliative care: comfort and living well at any stage, not limited to hospice or end of life care.

Case Study: Frank

• Frank, a patient with prostate cancer and HIV, manages his suffering with support and choices fitting his values, like going on an adventurous trip.
• Emphasizes the importance of having support to make decisions that reduce regret.

Perspective Shift

• Studying art history after the accident taught the speaker about perspective.
• Shift in perspective can transform anguish into beauty.
• At Zen Hospice Project, rituals like sprinkling flower petals on bodies create a warm, aesthetic farewell.

Hospital Experience vs. Hospice

• Hospitals are essential for acute trauma and treatable illnesses but are not designed for living and dying.
• Example of smuggled snowball in a burn unit provided a profound, sensory experience for the speaker.

Preparing for the Future

• Increasing numbers of people living with chronic and terminal illnesses require a dynamic infrastructure.
• Important elements: policy, education, training, systems, and physical spaces.
• Research shows what is important to those near death: comfort, unburdening, existential peace, spirituality.

Sensory and Symbolic Needs

• Small comforts and sensory experiences like smoking or having a pet provide significant comfort to terminally ill patients.
• The Zen Hospice kitchen emphasizes the importance of sensory experiences even when residents can't eat.

Design Cue 1: Eliminate Unnecessary Suffering

• Caregivers should aim to relieve, not add to suffering.

Design Cue 2: Honor Dignity Through the Senses

• Sensory and aesthetic experiences are crucial for dignity in life and dying.

Design Cue 3: Aim for Well-being

• Shift from disease-centered to human-centered care.
• Caring can be a creative and playful act, enhancing life rather than just reducing suffering.

Conclusion

• Encourages designing towards death, not just trying to avoid it.
• Finding beauty and meaning in life despite, or because of, death.