My husband’s grandmother was admitted to a palliative care unit six years before I met her. She had a stroke in September of 2000, was paralyzed and had been in the same ward, room and bed since. She couldn’t see me or talk to me, but I went to visit her every few weeks. It was a 20-minute bus ride from Davisville station. I remember the strange calm of a long-term care facility. The kind of feeling that you have when you’re waiting for a streetcar at a precarious intersection on a beautiful spring day. I would sit on the edge of her bed and stroke the bulging green veins that hid beneath the wrinkles on her hand. White sterile walls, elevated beeping machines and cool urine-scented air surrounded us. Sometimes I would talk to her—tell her about my day and the strange people I saw on the way there—as though I needed to read her a bedtime story. It made time go by faster. It felt good to offload a day of meaningless work and gain perspective from the subtle movements in her face. A squint, a nod, a shiver and on a good day, a smirk.
I had no idea that almost two years later I would be standing behind her daughter (my mother-in-law) and grandkids (my husband and his younger sister) in the same room, praying as they grieved and comforted her to her last breath. She died at 8:23 p.m. on November 3, 2008.
Today, as I research and try to make sense of a patient’s experience during the end of life for the MyHealth initiative, I reflect on this story. Partially because I want to be conscience of my own bias toward death, which is acceptance that it is an inevitable part of life. That it is about reaching a point in time when your physical form has served its purpose (I didn’t cry when my husband’s grandmother passed away that day). But I share this experience also as a way to highlight the obvious (and not so obvious) difference between death that is preceded by end-of-life care and death that is tragic and sudden, like that of Scott Hunter. Scott, my neighbour and local entrepreneur, joined his friend for a weekend trip to the 2015 Kentucky Derby, resisted three teenage robbers on his way back to their hotel and was shot. I didn’t know Scott very well, but I cried for weeks after his death. This and other stories that I have encountered in this work tell me that end-of-life care is all about time.
A snapshot of the research method
The MyHealth initiative is informed by the application of service design to develop a deeper understanding of specific touch points with the healthcare system, including the end of life. In simple terms, service design is an immersive, creative problem-solving approach that leans on the principles of human-centred design, co-creation, iterative prototyping and others. It starts with a divergence of research (such as ethnographic interviews and reports) on a problem space and then moves toward developing insights from the research and a particular persona, an individual with a name, personality and context. The persona supports the creation of a journey map to anchor the experience of the problem and highlight the areas of opportunity. The insights inform design principles for potential interventions, and a collaborative gathering of stakeholders from various parts of the system (caregivers, social workers, physicians and policy makers) come together in a co-creation process to prototype and test ideas that support a common goal—to improve the quality of life for patients (and I would add their social supports) at the end of their life.
Predictability of life
Maybe one of the more obvious yet complicated connections to time at the end of life is the direct implication that life will be coming to an end and therefore time is limited. I learned that symptoms and physical signs of a progressive illness are used as characteristics to define when a patient is entering the end-of-life stage. These somewhat subjective characteristics create ambiguity for healthcare professionals as well as patients and their families or caregivers. Unlike breaking a leg, the trajectory and/or sporadic nature of some chronic illnesses for example make it difficult to strongly categorize patients as entering the end-of-life stage. Yet, they may be either close to the end, or may need access to the same level of care over a longer period of time.
Time moves fast and yet too slow
Upon entering the end-of-life stage, some patients choose and manage care (for example, hospice or home care), but all experience the quick and real trajectory of illnesses. Time seems to move too fast for distant caregivers and families when their loved ones suddenly become frail, lose functioning organs and cannot bear more pain. Yet time could not be fast enough for patients who feel as though they are a burden on their working caregivers and families. Both patients and caregivers struggle with protecting memories and counting down to death. The depth of emotional fatigue causes them to lose sight of the opportunity to spend quality time together. It makes me wonder why the most common picture associated with end-of-life care is two evenly placed hands, held together as though one supports the other equally and both travel along the same path.
People and process play with time
If time influences the definition of end of life and if time is sensitive and precious for the patient, family and caregivers, then what is the influence of time on the journey that patients take from talking to their family doctor to their last days? I learned that with all the focus on time at the end of life, access to care is limited to those who have spent time to build relationships and grow a network of medical professionals. People who have a strong social support system and the ability to seek advice tend to travel faster to the care they need. Yet data travels slowly through virtual (and more often paper-based) systems. Patients, families and caregivers are left helpless as they wait for the oncologist to send results to the palliative care physician or as the home care nurse waits to get notes from the palliative care physician. The combination and influence of social support systems and communication lags impacts the well-being and access to care for patients at this stage.
My perspective on the value of time is informed by many experiences that I have had, including becoming a mother. But the research for this initiative has been incredibly powerful in helping me appreciate the opportunity that we have as a society to articulate the value of time, specifically in relation to our health.
I think it’s easy to flirt with time and get caught up in sweet memories from early years and fears of things that “could” be in later years. But between history and a future that does not exist, there is the opportunity to make meaning. Maybe to have better relationships. Don’t get caught up in flirting with time. Talk to someone about your end of life, and rise above waiting—waiting to take care of yourself.
(Photo by Fotos GOVBA.)
Nisha Haji is a Community Service Designer who is inspired by creative and collaborative problem solving that is centred on making sense of peoples experience. She believes in learning by doing and is grounded by her childhood experiences of growing up in Kenya.