When patients come to you, they're hoping you can fix their medical problems. They're also hoping you'll relieve their suffering, especially if their condition is either not improving or continuing to decline despite all your therapies. The key to relieving suffering is to determine the best course of action by, first, ensuring the patient (or family) understands the situation and, then, talking about goals of care. Both are difficult tasks.
A young Dr. Sunita Puri found herself tongue-tied when trying to have those conversations with patients. That is, until her palliative care fellowship. There she discovered a language that helped her address patients' suffering and discuss goals of care. Fortunately for all clinicians, she wrote her memoir to share that new language plus insights from the world of palliative care.
Reading Puri's That Good Night: Life and Medicine in the Eleventh Hour feels like doing a mini-rotation with a gifted attending. You see the ways palliative care specialists not only help patients but also help you. You are exposed to ideas and phrases that help you talk to patients about options at the end of life in honest, hopeful ways. You hear a thoughtful physician reflect on what it means to be a clinician today, caring for seriously ill people.
The book weaves Puri's personal story with clinical vignettes, a common approach by physician-authors. What sets this book apart is her fresh perspective shaped by her upbringing as an American-born child of South Asian immigrants and her expertise in palliative care. Puri was drawn to palliative care by the opportunity to be both scientist and humanist, which is no surprise given her deeply spiritual parents. Throughout her childhood, they'd turned mundane events into teachable moments, hammering home the fact that "life is a temporary gift." They'd regularly talked about "what it means to live well with the knowledge of our transience"-useful lessons whatever your spiritual beliefs.
For clinicians, a strength of the book is the modeling of words that facilitate discussions about goals of care. Over and over, I found myself saying, "Nice! That works." For example, the mother of a patient tried to cut short the conversation by saying, "Keep doing everything." The physician responded, "Part of doing everything for him means having this talk." Another patient insisted it was too early for that discussion. Puri countered the myth that patients always know when it's time by saying tenderly, "I can hear how hard it is to reconcile your sharp mind with how much your body is struggling...."
Another strength is Puri's demonstration of how consulting the palliative care team can help you in your care of shared patients. For one thing, a consultation can off-load some of the demands on your time. It takes time to tease out what patients mean when they say they want to "fight" or that they're hoping for "a miracle."
For another, the palliative care team can support you by...
* Paving the way for your time-compressed conversations with patients
* Helping patients process their conversations with you
* Alerting you to patients' misunderstandings
* Tipping you off if patients need to hear from you that treatment is not working
* Enabling difficult discussions when patients find them easier with someone new
Every chapter exudes Puri's compassion for you, as much as for patients. For example, she does not criticize oncologists who unwittingly mislead a patient by talking positively about improved test results, knowing meaningful recovery is unlikely. Instead, she empathizes, "Because you care the way you do, it's natural-and beautiful-that it's difficult to say what needs to be said."
While you're striving to do your best in difficult situations, it's healing to be reminded that you can say everything perfectly, yet patients may react badly. That you can prescribe supportive therapies optimally, yet patients may suffer at the end because "a 'good death' may not be in the cards." Most important, it's healing to hear that "it isn't your job to erase...their suffering, but rather to see it, not ignore it. To ease it when you can. And to be there as they move through it...."
Some of Puri's reflections may help you manage your expectations. If you see family meetings as "procedures," you'll expect them to require preparation and concentration. If you see each meeting as part of a process, you won't be surprised or disappointed if your first conversation seems to make no difference. You won't blame yourself if there's still no apparent progress until after a few sessions. As Puri eloquently puts it, "There is no freeway between the mind and the heart." Patients will take however long they take. Ultimately, patients must decide "whether they could accept and endure the most heart-shattering information, or the greatest loss."
After all is said and done, no matter how well you accept the things you cannot control, it's difficult to be "immersed in the enormity of the final experience all human beings would share." Be prepared for some of the stories in That Good Night to unleash pent-up emotions. Surely one or more will stir memories of your own patients, especially those who never experienced peaceful resolution or redeeming growth at the end. If you cry, that's a good thing. Just as curative chemotherapy makes patients weaker before it makes them stronger, expressing your grief in a safe place helps you hold on to the humanity that makes you a better clinician.
In the care of seriously ill patients, you will see suffering. That Good Night will inspire you to recognize and respond to suffering with compassion. Whether caring for patients on your own or with the support of a palliative care team, fluency in the language of suffering will help you preserve compassion in medicine.
Like this article? Go online for more!
As an internist and cancer survivor, Wendy S. Harpham, MD, FACP, offers a unique perspective on oncology practices. Visit http://bit.ly/2p7B1OM to read more articles!