Father Pio Hospice

End-of-life care toolkit

Father Pio Hospice

End-of-life care toolkit

End-of-life care digital toolkit provides step-by-step guidance and support in terminal illness for patients and their families across Poland.

Scope:
Experience Design
Experience Strategy
User Research
Scope:
Experience Design
Experience Strategy
User Research

End-of-life care digital toolkit provides step-by-step guidance and support in terminal illness for patients and their families across Poland.

Over six months, I collaborated with a 20-bed Father Pio Hospice in Puck, Poland that provides care for terminal cancer patients. Due to insufficient access to end-of-life care in Poland, the NGO has been receiving requests for help from patients and families across the country. To provide much-needed support, the hospice decided to scale its outreach through a digital service that provides guidance for advanced cancer patients. The project employed a service design process to unpack the complexities of end-of-life treatment and uncover blind spots in the healthcare system. As the project lead, I outlined the process and led the research and co-creative design activities.

Understanding the universe of the cancer treatment

To understand the needs of patients and their carers I conducted 35 individual interviews with volunteers, caretakers, nurses, oncology doctors, palliative care practitioners, patients, and their families across Poland.

I understood that during treatment, a patient's condition typically prompts the female family member to take the role of the prime caregiver without basic information or guidance. We outlined the 12 challenge areas of the patients and their carers. We agreed to focus on two:

● Knowledge: there aren't sufficient, accessible, and professionally verified sources on how to care for patients in terminal illness. Carers rely on word-of-mouth sources and learn from their own mistakes.
● Isolation: the stigma of cancer-related death and isolation of patients and their carers from society. Combined with insufficient access to palliative care, the situation leads to overloading the family members with responsibility, the carers need support and care themselves.

Uncovering blind spots in patients’ journey

When mapping each stage of the cancer treatment, I learned that the patients are transferred between multiple, disconnected private and overloaded public care institutions. The situation becomes dramatic when the cancer treatment is unsuccessful, and the patient is sent home. The black hole is a metaphor for the patient's situation after the end of treatment. The patient is being rejected by the healthcare system. Oncologists refuse further treatment and oftentimes, do not provide information on palliative care. The sick person falls into a “black hole” and drags the primary caregiver with them. They both act in chaos, trying to navigate in this dramatic situation and find help.

Co-creating service with experts

I carried out several customer journeys and experience mapping workshops with the client and experts: psychologists, doctors, non-governmental organizations to outline the value proposition for 6 different service prototypes for creating an accessible information service. The prototypes were tested with experts and caregivers before arriving at the final solution.

Defining the experience strategy

I developed a brand and a service prototype for an end-of-life care navigation toolkit along with the information architecture and strategy guidelines document. The digital toolkit covers a step-by-step guide on necessary actions for advanced cancer patients, videos showing best at-home care practices, and a database of verified service providers.
Studio:
Touch Ideas.

Client:
Father Pio Hospice in Puck, Poland

Team:
Klaudia Doerffer
Karol Dworakowski