Compassionate, patient-centered care is a noble and achievable goal. In my two most recent columns (“In Defense of Compassion,” 3/25/13 issue; and “Personalized Medicine,” 4/25/13 issue), I explored the many ways physicians' compassion facilitates high-quality oncology care.
Unfortunately, most people think the onus lies completely on physicians and nurses to make this a reality. It doesn't. Today's patients also have obligations, given the dramatic changes in medicine. So I've written this handout to encourage patients to think about their role in helping you care for them. You are welcome to use it as is. Or, you can rework it to reflect your personal style and beliefs.
Getting to Know You
My primary goal is providing expert and compassionate care every step of the way. To do this, I will strive to know as much as possible about your cancer, since everyone's cancer is distinctive in some way. I also want to know what makes you “you”—such as your fears and hopes, strengths and weaknesses, priorities, values, and risk-taking preferences. This will enable me to personalize your care as much as possible.
Different people prefer different communication styles and have different needs regarding the amount and type of information shared. If I understand what works best for you, I can tailor my explanations when reviewing your test results, offering a prognosis, discussing your options, and recommending a plan of action.
In addition, we will be making many little and big decisions throughout your treatment and recovery. And often there will not be one “right” course of action. But there will always be a best path for you. Only by getting to know you can I make the best judgment call, because only then can I weigh the risks and benefits for you and the advantages and disadvantages for you of each option.
Here's the problem: Cancer care has become highly complex. We will have many tasks to complete at each visit, such as reviewing your test results, assessing your current condition, answering your questions, and mapping out a course of action. This doesn't leave much time for meaningful discussions about your life other than your illness.
But with your help, I can learn some essentials pretty quickly. Then, over time and with continued effort, we'll get to know each other better and better. Communication will become easier. Whatever challenges lie ahead, the more I know about you, the better I can care for you.
How You Can Help
* Symptoms: I need a clear understanding of each symptom, so I can determine its cause(s) and our best response. Start by describing what your symptom feels like. Then explain to me how each symptom is impacting your daily life. In particular, let me know how it is affecting your ability to eat, sleep, walk, sit for long periods of time, or concentrate.
In addition, help me understand which responsibilities, hobbies, or relationships have been hindered or precluded by your symptoms. For example, let me know if nausea makes it impossible to prepare your own meals or if numbness of your fingertips makes it difficult to button a shirt. Do you now lean on the grocery cart to get through a shop? Do you now avoid sex because of something related to cancer? Have you stopped accepting dinner invitations because you're anxious you won't feel well enough to go?
This detailed reporting opens opportunities for me to adjust your medications and prescribe supportive therapies. Many times, working with an allied health professional such as a physical therapist or oncology social worker can help you regain lost function (or prevent you from losing function). Even if additional therapies don't help your cancer situation, feeling better is reason enough for me.
* Treatment Goals: I will do all I can to treat your cancer optimally. That said, I don't want you to put your life on hold while you are going through treatment or recovering. I want you to enjoy life's little pleasures, when possible, and do things that are important to you, no matter what is happening medically.
The more I know about your life between doctor visits, the better I can tailor your tests and treatments to your schedule. So please give me a heads-up if you belong to a book club that meets a certain day or you are planning a family reunion. Don't worry: I won't ever jeopardize your chance for recovery.
* Photos: Please bring to your next visit a few pictures that capture parts of your life that define you. Most people choose a family photo and a picture that illustrates a hobby. But feel free to bring in a photo of a beloved pet, a favorite hangout, or anything else meaningful to you. Have fun with it!
* Managing Hopes: Before concluding each visit, I will review what's going to happen next, as far as I know. I do this to help you manage your expectations and prepare for the likely course of events and outcome.
Just because we are pressed for time, we don't have to neglect our hopes for your recovery. I want to know your specific hopes, so I can help them become reality. If specific hopes don't materialize, I want to help you find and nourish new hopes.
So let me know if your immediate hope is, for example, to get through a round of treatment without missing work. Or to feel well enough to attend a graduation or wedding. And help me understand your overarching hopes, such as your hope to regain your pre-cancer stamina or help your children through your illness.
I won't talk about my hopes at every visit. Rest assured: I will always be hoping for the best possible outcome for you. There is life after a cancer diagnosis. By getting to know you, I can do everything in my power to help you make it a good life.