By Kelly Michelson, MD MPH
At two months old, when most babies are starting to smile, Anna* began getting weaker. Over the next several months, Anna would lose the ability to move her arms and legs, leaving only a few facial muscles functioning to express her thoughts.
Anna had spinal muscular atrophy, a disease that affects children and impairs the nerves that tell muscles to move. Abandoned by her muscles, her mind would remain intact, able to develop, understand, and learn.
Because Anna's muscles would get progressively weaker in the coming months, her parents needed to make a decision. They could either avoid surgeries and invasive technology like feeding tubes and ventilators to focus on providing comfort care, knowing that Anna would die in a matter of months. Or they could place Anna on a breathing machine permanently, enabling her to survive for years.
Anna's parents took her home, allowing her to die comfortably surrounded by family and love--and that was the right choice for Anna and her family. But the next child in a similar condition I have as my patient may go home with a breathing machine and that will also be the right choice.
As a pediatric intensive care unit physician, I witness and consult on these extremely difficult decisions regularly. And like the decision faced by Anna's parents, often there is more than one "best" choice.
In a recent important statement, the American College of Critical Care Medicine, the Society of Critical Care Medicine, and the American Thoracic Society, argue that clinicians in the intensive care unit should use shared decision-making when making decisions with more than one acceptable choice.
This statement asks clinicians to understand and master shared decision making. But it is also a call for patients and their loved ones to advocate for personalized healthcare.
At first glance, some might think "shared decision making" refers to clinicians communicating with each other to make a decision about a particular patient. But actually it describes how clinicians and patients or patients' loved ones engage with each other to arrive at healthcare decisions.
In this statement, experts define shared decision making as
a collaborative process that allows patients, or their surrogates [people acting on the patient's behalf], and clinicians to make healthcare decisions together, taking into account the best scientific evidence available, as well as the patient's values, goals and preferences.
But this definition does not clarify important nuances that patients and their loved ones need to know. In my experience of over 10 years, I have discovered five practices that all patients or their loved ones would benefit from knowing about shared decision making.
1. Shared decision making gives you some control. Studies show that up to 10 percent of people want to make decisions independently, gathering just the medical facts from doctors and little opinion about how to proceed. Research from adult and pediatric settings indicate that 2-37 percent of people would rather the doctor make decisions for them. Most people fall somewhere between those extremes. Shared decision making acknowledges that no one approach prevails, and advocates that clinicians tailor the process to what the patient wants. Indeed, even for the same patient that could look differently depending on the decision. For example, it may not make sense for a patient to decide on the type of antibiotic to take, but perhaps she wants complete authority over timing of a non-emergent surgery.
2. Providing personal information to your healthcare team helps. Sharing your goals, aspirations, culture and responsibilities with your clinicians will help them know you as a person, and tailor therapy appropriate for you. Knowing that you work at night, for example, might impact what medicine is best for you or how it is dosed. If you hope to attend an event like a graduation or go on a long awaited vacation, your clinician can suggest ways to help you plan treatments. When your religious views impact what kind of treatments you are willing to receive (for instance, a Jehovah's Witness may refuse blood transfusions), your clinician may be able to change the approach to a procedure or therapy accordingly. Admittedly, it may be hard to know what kinds of information to share. And it can be difficult to interject during difficult conversations. Research shows that in discussions between clinicians and patients, clinicians do most of the talking. In a recent study of meetings involving clinicians and parents of critically ill newborns, doctors talked 65 percent of the time. While it may make sense for clinicians to take up much of the conversation, your personal information is equally as important.
3. Knowledge is power. As you wade through the myriad of medical terms that many encounter during illness, your clinician can help. Here are some suggestions for ensuring you have the knowledge you need. If you hear a new term, ask for a definition or ask where you can find more information. The internet can also help provided you go to reputable sources like UpToDate or Medscape. After getting information, repeat it back and confirm with your clinician that you understand it correctly.
4. It's OK to get a second opinion. Getting additional opinions can change outcomes. In one study, 53.5 percent of women with breast cancer had a change in recommended treatment based on a second review of imaging studies. Organizations such as the American Cancer Society and Patient Advocate Foundation also recommend second opinions. Granted, some may avoid getting a second opinion fearing that it sends a signal to your clinician that you are difficult or mistrustful. This can be particularly challenging if you plan to put your life in her hands going forward. But many clinicians actually appreciate you getting a second opinion because they would rather you feel confident about your plan having explored all the options. It may even help to get input from people who are not doctors but have faced a similar decision, keeping in mind that every patient's situation is different.
5. You can ask for an ethics consults. If your views fundamentally don't align with those of your clinician, an ethics consult might help. Ethics consultants specialize in addressing problems for which more than one reasonable solution exists. Most hospitals offer such services without charge and allow anyone to ask for input from the ethics consultant.
Thankfully, in medical care today clinicians no longer make all the decisions, leaving patients to follow blindly. Shared decision making means that clinicians and patients or their loved ones are partners. That partnership assumes responsibility for all those involved.
Certainly no one wants additional responsibilities when they are ill or suffering. But advocating for yourself can go a long way towards coming to choices that are right for you or those you love.
*Not the patient's real name, but permission granted by parents.