BJ Miller, a physician specializing in hospice and palliative medicine, argues that it’s not about being dead but rather about dying and suffering. Miller’s perspective on the end of life comes from personal experience – he lost both his legs and arm to an electrical accident during his sophomore year of college. Since then, he has advocated for redesigning the healthcare system better to serve patients and caregivers during the end-of-life process.
Miller’s main point is that the American healthcare system was designed with diseases, not people, at its centre. This means that the system often fails to provide care tailored to individual patients’ needs. Miller argues that this is particularly true at the end of life, where patients and their caregivers face unique challenges that the healthcare system is ill-equipped to address. He believes design thinking can help us create a more intentional and compassionate approach to dying.
One of the first design cues Miller offers is distinguishing between necessary and unnecessary suffering. Necessary suffering, such as the physical pain often accompanying illness, is essential to life. However, unnecessary suffering usually caused by the healthcare system serves no good purpose. Miller believes caregivers and healthcare providers should focus on relieving unnecessary suffering rather than adding to it.
Miller also emphasizes recognizing that healing often happens through compassion and suffering together. He believes the healthcare system should be designed to foster this connection between caregivers and patients. This requires a shift from a purely clinical approach to care to a more human-centred approach that values empathy and emotional support.
To illustrate the potential of this kind of approach, Miller shares the story of one of his patients, Frank. Frank was living with advancing prostate cancer and long-standing HIV, and he often visited Miller to manage his symptoms and to talk about his life. Frank was determined to live life to the fullest despite his health challenges. Despite the potential dangers to his health, he decided to take a risky rafting trip down the Colorado River. Miller believes that Frank’s decision reflected his determination to live without regret and make the most of his remaining time. Miller argues that by providing patients like Frank with emotional support and guidance, the healthcare system can help them make choices aligned with their values and priorities.
