Abstract
In a Byzantine health care system that often leaves patients lost and confused, “Hope for the Best, Plan for the Rest” is an essential guide of invaluable insights and tools for people navigating the challenging journey of a life-changing illness. Penned by Drs. Sammy Winemaker and Hsien Seow, two experts in palliative care, this book combines hard-earned wisdom and key research to provide a roadmap for patients to take control of their illness experience.
Piggybacking off their popular podcast, “The Waiting Room Revolution,” Winemaker and Seow call for nothing short of a revolution in their hardback. “We want to create a new kind of patient, one who is equipped with the advice of the many patients before them. One who is wise to the barriers that exist, and readied with solutions, skills, and actions to overcome them,” the authors write.
The 272-page book is a clear-eyed honest portrayal of the challenges and opportunities facing people who have serious life-threatening illnesses. It is broken down into seven main solutions, or “keys,” to guide patients and their caregivers, and it also includes detailed descriptions of what to expect at the end of life. Throughout Winemaker's and Seow's thoughtful work, there is a recurring theme that open realistic information serves as the lynchpin for managing chronic, progressive, or life-limiting illnesses. The seven keys to effectively manage this voyage are walk two roads, zoom out, know your style, customize your order, anticipate ripple effects, connect the dots, and invite yourself.
Although the names of each key may not be familiar to most palliative care clinicians, the content will undoubtedly resonate. “Walk Two Roads” is about hope, its limits, and its possibilities. Most people, the authors argue, walk a “single, narrow road” focused on being hopeful and ignoring the rest with health care providers actively joining in. Pairing open and honest conversations with hope serves as the foundation of this book. “Patients who are stuck in unrealistic hope become hopeless because the focus of hope doesn't evolve with the reality of the illness,” the authors write.
Winemaker and Seow want patients to know, or at least actively choose not to know, the details of their illness trajectory. In “Zoom Out,” they write about the natural history of illness—not in excruciating or unnecessary detail but big picture timelines, acknowledging that timing can vary from person to person. The duo chronicle three narratives: the story of an eventual decline like with cancer, long waning with intermittent episodes like with heart failure, and prolonged dwindling like with dementia. “It is much easier for health care providers to focus on the day-to-day issue rather than talk about the big picture…but when the big picture is lost, so are you.”
Dotted throughout the book are lists of important questions to ask providers and your own family, exercises about defining values or deciding what to record about the journey, action items for understanding an illness, and myths/truths about how providers and the health care system really work. The authors weave in numerous vivid real-life stories from the inspirational to the tragic, which initially read like echoes of chart-ready histories, but later develop into moving pieces. In “Know Your Style,” the personality and styles of not just the patients, but also their “inner crews”—or caregivers, family, friends, and others in their life—become a subject for self-reflection and management.
Or put more succinctly: Know yourself and know your crew. Knowing how patients and their caregivers have handled challenges can predict how they will deal with the coming trials, and lead patients to better anticipate “Ripple Effects.” The home team, or “inner crew,” that plays such a crucial role in advanced illness is given ample space and consideration in this book. It recognizes the parallel journey of loved ones—the authors list out the duties in a job description, talk about the limits of home health, and straightforwardly say: “most of the support you will require is going to fall outside the walls of the hospital.”
Filled with useful easy-to-understand analogies, Winemaker and Seow write that people can tailor their care to match their goals and preferences in “Customize Your Order.” The authors state frankly that personalized care might not be so personalized after all, but in truth, it is just a set of standards that have worked for others. Comparing bespoke care to school uniforms, they write: “Every student at those schools must wear the uniform; this is non-negotiable. There are some options to choose from—pants, kilt, cardigan, sweater, vest—but by and large, the uniform choices are rather limited. However, every student wears their uniform a little bit differently.”
The descriptions of the health care system and providers are not so much critiques as they are authentic portrayals. There is no world-weary cynicism in this book, but rather an optimistic realism. It is a hopeful work that is filled with hard truths. In “Connect the Dots” and “Invite Yourself,” the power and responsibility are with the people, encouraging patients not assume the health care system will flow nor to wait for clinicians to bring up difficult topics.
“This is because many doctors are not adequately trained, with proper coaching and practice, to have open, honest, and realistic communication with patients and families about all the possibilities, including the options of no treatment or stopping treatment. Even when it is obvious that a person is declining, doctors may offer the next treatment because discussing their limitations to fix or stabilize illness is admitting that doctors are human and that many diseases cannot be cured.”
Winemaker and Seow wait until the end to talk about “the end”, with the last two chapters aptly named: When Time Is Running Out and Demystifying Death. These sections are where the past work of the other chapters starts to pay off. They point out that there are few sudden deaths if we pay attention to the details, ask the questions, and watch for the changes. Some people will take the journey one day at a time, which can leave them “unprepared, reactive, and crisis-driven.” For them death can seem sudden. But there is another way.
The authors' advice includes this jewel: “The speed at which the changes are happening in the last year gently predicts the amount of time a person has left. If you are slowing down from month to month, the prognosis is likely measured in months. If it is changing from week to week, the timeline is likely measured in weeks. If the decline is happening from day to day consistently, then the prognosis is measured in days.”
Although the book offers valuable guidance, it may primarily attract a readership already enjoying certain privileges and advantages. The accessibility of health care resources is a benefit that some have and others, especially from the most disadvantaged socioeconomic groups, do not. 1 Certain sectors of the population are at higher risk including those with limited English language skills and low literacy as well as individuals with lower levels of education. 2 And these are not the only people who might be left out of the revolution. In a mere five pages, the authors also attempt to tackle sick children, patients with housing and food insecurity, racialized groups, language barriers, LGBTQ+ communities, and people without robust support networks.
Their absence would have been a glaring omission, but their inclusion with such few words sours the call for revolution. A robust resources section for these populations might have struck a happy medium between keeping the book as general as possible and making sure the revolution was truly revolutionary for all. There is a moral imperative to ensure that the information and tools provided by palliative care reach the widest possible audience.
Only at the end of both the book and life do the authors specifically talk about palliative care, and then only briefly. But this book is really a love letter to palliative care—to its principles and philosophy, to its ideals and methods, and to its patients. Winemaker's and Seow's expertise shines through in their ability to convey complex concepts in a clear and accessible manner along with a writing style that is compassionate and engaging. “Hope for the Best, Plan for the Rest” is an indispensable resource for anyone facing a life-changing illness.