Patient Advocacy: Advocating for yourself or someone else

April 01, 2016

What is advocacy? According to Merriam-Webster, advocacy is the act or process of supporting a cause or proposal. When faced with a complex medical condition, be it cancer or any other major diagnosis, advocacy is essential to help patients and their families understand treatment options.

How an advocate can help

For years the medical profession has recommended that all patients facing a complex medical diagnosis have an advocate by their side. The advocate is there is to listen carefully, take notes and ask key questions that the patient may miss. Afterward, the advocate helps the patient understand the diagnosis and the provider’s recommendations.

Having an advocate during this process is crucial, and I speak from experience. When I underwent chemotherapy a few years ago, I wasn’t ready to hear everything the nurse was telling me about treatment. That’s when my sister stepped in to ask further, probing questions.

An emotional time for all

At times like this, it’s not unusual for patients to become overwhelmed. They may not be able to get beyond understanding how they could have such a dire diagnosis. Most of the time, a patient is caught up in the cycle of grief: denial, anger, bargaining, depression and acceptance.

Close family members such as husbands, wives and children also can be overwhelmed by these feelings. And remember, we don’t just simply progress through the stages of grief; rather, we float back and forth among them.

At a medical appointment

When patients are struggling to make sense of their situation, it’s all the more important for an advocate to attend medical appointments with the patient.

Communication is complicated and difficult enough in everyday life. When we add a medical diagnosis to the mix, information can be misunderstood or lost in translation. So here is what I recommend:

  • Don’t be afraid to ask your provider questions if you don’t understand what he or she is saying.
  • Have someone with you who can take notes, or take notes yourself.
  • Confirm what you think you heard your provider say.
  • If there is a lingering question in the back of your mind that you didn’t ask during your appointment, call your provider’s office or use MyChart to ask the question.
  • When at home, write questions that come to mind in a journal and discuss them at your next visit or via MyChart.
  • DO NOT let fear keep you from asking questions or objecting to a treatment plan. Medical care is a team sport and that means everyone gets to participate, including you, your provider, his or her staff, and the support staff in all of the departments involved in your treatment. Sometimes our objections to a treatment plan are based on fear. It is important to explore these fears with your provider and ask if there are measures that may alleviate your anxiety.
  • Family members: If you see a change in your loved one—be it their mental state or a physical change such as new symptoms or potential side effects—you must speak up! When a provider visit is limited to 20 or 30 minutes every two weeks or over months, it can be difficult to detect changes if the patient is not reporting them or is unable to recognize them on his or her own.

In the hospital

Patients don’t just need advocates for medical appointments. They also need extra support when they are hospitalized. I don’t think anyone should be left alone during the first 24 hours after major surgery.

If your loved one is in a private room, ask about staying overnight. It might not be possible to sleep in the room if your loved one has a semi-private room, but it’s still important to be on hand during the first 24 hours.

Don’t be afraid to ask for help

Got a scary diagnosis? Get a notebook and start asking questions. Or get a family member or friend to help.

And if you, or a loved one, need help finding a patient advocate to ease the way, please contact us. Swedish has a wonderful social work support system with experts who can help. We also have an online resource library and a physical library at the Swedish Cancer Institute that is open to all.

As a Nurse Navigator at Swedish Digestive Health, I am here to help patients with questions and concerns.  If I don’t have the answer, I will get one. It’s my job to help patients find the right provider for the symptoms they are experiencing. Call me! 206-215-8178.