Service Design Toronto: designing for end of life experiences

Elina and Linn presenting at Service Design Toronto: Designing for End of Life Experiences

Death and dying are universal human experiences – pretty much the only thing we know for sure about our lives. In a Western context, death has become taboo and institutionalised. Palliative care is a sensitive space. With an ageing demographic, our healthcare systems are struggling to keep up with demand and provide people and their loved ones with good services as they reach end of life.

This month’s Service Design Toronto event explored the advantages and challenges of bringing a service design approach to this space. How do we design for incredibly messy, multi layered systems and experiences? What types of skills and capacity building might designers need to work in these emotionally charged areas?

Karen Oikonen presented her research work as part of the OCAD Strategic Foresight and Innovation Masters Program. Driven by a personal experience of losing her father to cancer, Karen embarked on a deep dive into the ‘needs of family members who are at a distance from a loved one during palliative care.’

Horizon scanning revealed some shifts that are taking place in terms of palliative care:

Family: Traditional to Diverse – our family configurations are evolving

Communication: Direct to Digital – face to face communication is moving towards digital modes, however the healthcare system is not set up to accommodate this

Death: Denying to Discussing – conversations about death are being facilitated by movements such as Death Cafes and Death Over Dinner

Based on experience and research, Karen elucidated the value of a service design approach in this space as follows:

  • Opportunity to broaden the currently health care practitioner driven conversations
  • Connecting to models of patient and family centered care through a human centred design approach
  • Service design as user centred and co-creative, considering the whole picture including time and sequencing of events

With many overlapping themes and considerations, Nisha Haji shared her work with the MaRS MyHealth research on ‘dying well’. This project aimed to:

1. Better understand the patient experience

2. Identify insights related to the experience

3. Establish design principles to guide interventions and co-creation

Service design tools and methodologies included interviewing primary caregivers, palliative care physicians and nurses, informing the developments of personas and experience maps.

Many insights emerged from the research around the themes of relationships, time and story. Some samples of these insights below:

  • Relationships: Doctors are trained to be doctors: Much of the physician’s’ role at the end of life stage is based on their personal philosophy on the role of healthcare, which is influenced by the training they receive.
  • Time: Data is dragged through the system: Physician notes of the patient visit and test results move through the healthcare system with significant lags (up to 10 day delays). Release of information usually requires patient consent and data is only accessible in hard copy often via fax.
  • Story: Dying is institutional: Most patients believe that end of life care and inevitably death can only occur in a hospital, hospice or nursing home. They don’t share their desires for alternative end of life care.
Discussion at Service Design Toronto Designing for End of Life Experiences

Both presentations provided much food for thought and discussion, and the attendees shared challenges working in this space and their experiences with death and dying. Karen has created a website where you can learn more about the project, and Nisha has written about her work on the MaRS blog.