Imagine you know you have only a few months to live. What would you do with your remaining time?
In the book Last Acts (2010, Simon & Schuster, 368 pages, $26, ISBN 1416580379), palliative care clinician and researcher David J. Casarett, MD, explores the decisions patients make when terminally ill. And he does so in a practical way for clinicians who are not palliative care specialists.
Casarett's fluid writing sets the stage with provocative patient stories and historical accounts of iconic last acts, such as the notes left by coal miners who perished in the 2002 Sago explosion. Then Casarett sweeps you up in his personal search for an overarching organizational structure of the various acts he sees while caring for the terminally ill.
You'll find yourself alternately nodding, questioning, disagreeing, or simply wondering where he's going as he strives to classify last acts into categories that explain why patients do what they do when faced with “cruelly limited” time.
Using this taxonomy, Casarett tackles the greater challenge of his work as promised by the subtitle: Discovering Possibility and Opportunity at the End of Life. He aims to help patients and their caregivers, together with the members of their health care team, work toward narrowing the gap between patients' vision of a “good death” and how patients' dying actually plays out.
Many patients feel ill-equipped to tackle a task as significant and irrevocably final as directing their last acts. The clock is ticking. The pressure is on. And patients' strength and faculties are declining.
So patients do what they've always done: They ask you, “What do I do now?” More than inquiring about effective cancer treatments, patients are seeking guidance through the final phase of their life.
If you think this topic is out of your bailiwick (and I would have agreed before reading this book), think again. Without hitting you over the head, Casarett makes a compelling case for the vital role of clinicians in guiding patients who seem blind to end-of-life opportunities, as well as supporting patients' efforts toward purposeful last acts that are “unique and uniquely perfect.”
For example, you'll revisit the beaten path of how best to present treatment options to patients with terminal disease. From the palliative-care perspective, your recommendations affect—if not determine—whether patients continue chasing survival at any cost instead of embracing what time is left. Consequently your medical advice drives patients' last acts and helps define their legacy.
Casarett's insights on this and a variety of common dilemmas of patient care prompted me to rethink some of the advice I've been sharing over the years. For example, I've been advocating for relieving patients' burden of undeserved blame, urging clinicians to take a few seconds to remind their patients with complications or recurrent disease, “This is not your fault. This is something we all knew could happen even if everyone did everything right.”
Then Casarett introduced me to a young woman, Marta, who believes her aggressive cancer was caused by her past sins. As part of her so-called explanatory model, she perceives her suffering as the path to redemption.
Every member of her health care team—from the medical student to the senior attending—categorically denies any link between her past actions and current crisis. All to no avail.
A chaplain experienced in such scenarios intervenes, advising the health care team to respect and support Marta's beliefs. So Casarett complies, but with great ambivalence. He appreciates that Marta derives a measure of peace from her explanatory model. But he's distressed by her refusing effective analgesia and suffering unnecessarily.
The conflict resolves after the chaplain and a minister suggest to Marta that pain is a distraction from meaningful prayers of atonement. Instead of rejecting her explanatory model, they use it to reframe her pain and thus free Marta to die as comfortable as possible, both physically and spiritually.
Marta's story is only one of many that led me to revise my responses to common dilemmas I'd thought I'd solved. Humbled, I agree with Casarett: “There are usually no simple answers.”
One of the reasons this books appeals to me is that the philosophy and advice blends perfectly with my notion of a Healthy Survivor (namely, a survivor who gets good care and lives as fully as possible).
Echoing a fundamental tenet of Healthy Survivorship, Casarett argues that there is no one right way to approach last acts. Rather, there are best ways for each patient. And the quest for fitting last acts, like the pursuit of Healthy Survivorship, invariably includes misspoken words and missed opportunities alongside healing conversations and life-affirming celebrations.
The best we can do is the best we can do. Compassionate end-of-life care hinges on understanding the forces that shape patients' last acts, including your words and actions.
In the care of patients, a subtle shift occurs when treatments fail and disease becomes terminal: In addition to being experts providing sound medical advice, now you are healers posing wise questions. Ideally your questions lead patients to discover possibility and opportunity at the end of their life.
In the concluding chapter Casarett shares his list of essential questions, a shortcut to wisdom distilled from the preceding pages. I could share those questions here. In fact, I would love to. But I won't, just as I wouldn't reveal the solution to The Da Vinci Code in a review.
Last Acts is billed as a book about helping patients die. For me, this book is about helping patients live most fully in whatever time they have left.