This article originally appeared in the Canadian Hospice Palliative Care Association's Publication AVISO in English and French.
If receiving palliative care in the early stages of illness can improve a patient’s experience, why aren’t more Canadians doing so?
For one, we know that physicians who are not trained in palliative care may be hesitant to initiate those conversations. We also know that stigma and misinformation can impact decisions not to receive palliative care. Combined with the complexity and emotional distress associated with illness, it can be difficult for a patient to know what to talk about, with whom, and when.
What if we had a tool set to help physicians, patients, families, and other caregivers talk about palliative care earlier in illness, and in a collaborative, experience-focused way?
Design tools have been used in business settings for some time, and are increasingly being adopted by the healthcare sector. These tools gather insights through conversations with ‘actors’ - those impacted by a product, service, or process. By discussing experiences with actors, we can better identify how a process or system can be improved. The design tool set is vast, but there is one tool in particular that can both demystify palliative care and get people talking – the journey map.
A foundational tool of human-centred design and service innovation, a journey map is a visualization technique that helps stakeholders imagine how an actor (in this case, a patient) will think, feel, and act at key points.
Journey maps consist of two axes. The X-axis lists time-related stages or touchpoints, while the Y-axis lists experiential components (thoughts, feelings, actions, and actors for example). Together, they allow collaborators to imagine how time and experience intersect at places called touchpoints.
A typical journey map template used in business settings.
Maps are most effective when co-developed by patients, physicians, families, and other caregivers, during which potential ‘hotspots’ can be identified. Hotspots are touchpoints that actors expect to be emotionally or physically taxing. Identifying hotspots reduces the challenge of having to guess others’ wants and needs, a particularly valuable tool for navigating high-stress situations, or for making decisions when conversations may no longer be possible.
Journey maps can also be used to support decision making. For example, while we know that 93% of Canadian seniors live at home and want to stay, there are often individual circumstances that can impact the palliative care experience. By visualizing how different care settings, treatment options, and illness stages influence thoughts, feelings, and actions over time, journey maps can elucidate more informed care decisions.
A partial journey map based on home-care setting.
The above journey map illustrates what a typical day in a home-care setting might be like, and could be used as an aid for patients deciding between care settings in early illness stages.
Maps could also be customized based on:
- The treatment process of a certain illness: how might different illnesses and their stages impact the palliative care experience for patients and caregivers?
- The unique experiences of rural and northern, versus urban communities: how do differences in access to resources change the way palliative care is delivered and experienced?
- Family and caregiver needs: what are the emotional and physical needs of others who are impacted by illness, and how does this affect the patient?
- Experiences of front-line staff in medical care settings: how might we improve the experiences of those who are trained to deliver care?
Design offers a robust tool set, and the journey map in particular is a very simple and flexible visualization method. When used alongside other tools such as collaborative care plans, journey maps can offer an experience-centric view of palliative care that initiates important conversations, and generates valuable insights.
Not only does the process encourage more frequent and higher quality interactions related to palliative care, it may also serve as a catalyst for innovation, a necessity as Canadians live longer than ever, and demands on our healthcare system continue to increase nation-wide.