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The Autonomous and Responsible Patient: The Importance of Self-Advocacy

Kathryn Mikkelsen, member of the NATF Patient Advocacy Committee

Today, as a hospital employee, words like Deep Vein Thrombosis (DVT) and Pulmonary Embolism (PE) are a part of my daily vocabulary.  However, my first experience with DVT happened 13 years ago, when my dad was diagnosed with a DVT in his leg.  I remember the day it happened, I came home from school and there was at least ten new voicemails on the phone from my Dad saying, “Linda (my mom) it’s Ross, you need to call me.” My Mom arrived home shortly after and called my Dad, which is when he told her, he was admitted to the hospital for a blood clot.  I remember how scary it was going to visit my dad in the hospital and how worried my Mom was.

The night before he went to the emergency department my Dad noticed that his calf was red and swollen.  He knew something was wrong, and called his primary care physician first thing in the morning, who told him to get to the emergency department immediately.  My Dad works in a hospital and was given the “royal treatment”: his own private room and even a “goody bag” for his stay. Although my Dad did have to spend about a week in the hospital, he was very lucky.  He made a full recovery, and did not require life-long anticoagulation.  I would say the only lasting side-effect are his daughters and wife’s constant nagging every time he travels to stay well hydrated, get up and walk around every few hours, and wear his compression stockings.

Recently, I was fortunate enough to attend the North American Thrombosis Forum’s (NATF) First Annual Celebration of Gratitude, a fundraiser and awards dinner, and I believe everyone in attendance can agree that it was a beautiful and inspiring evening.  However, the evening also made me think of how scary and sometimes frustrating it is to be a patient: waiting months to get an appointment, sometimes leaving that appointment with more questions then when you came in, only to go home and worry about your health insurance.   While my Dad was fortunate enough to receive quick and effective treatment, and has a medical background to understand what was happening to him, I realize that not everyone is that fortunate, which is why groups like the NATF Patient Advocacy Committee are so important.

We are all lucky to be living in a country that has the best doctors and healthcare technology in the world.  However, many people only get access to those excellent doctors and amazing technology after a long struggle.  This is why it was important for NATF Patient Advocate, Henry Hagopian to share his story at the Celebration of Gratitude. Henry stressed that as a patient you must raise your voice and fight for the treatment you deserve, no matter how many times you are ignored.

In 2003, more than 60 world leaders met at a healthcare summit in Chapel Hill, North Carolina. This summit was focused on patient advocacy.  An important question posed to the leaders was: “Do we need an army of ‘good’ advocates or do we need a better system in which advocates are not necessary?”  The answer they came up with was “Yes – to both.”  In order to obtain this ideal the committee said, “We need the constant advocacy of patients, their families, and the clinicians who care for them.  In turn, a system based on continuous healing relationships will be one in which patients needs are more easily and naturally communicated so that the system itself advocates for patient-centered care.”1 The ultimate message was clear:  the patient plays just as important a role in his/her care as the doctors and nurses.

In my experiences as a hospital employee I have learned that there are excellent healthcare professionals who want to diagnose, treat, and educate patients. Furthermore, as a member of the NATF Patient Advocacy Committee, I know that the fight not to get lost in the healthcare system is frustrating and scary, which is why groups like NATF and so many others are there to help you.  Finally, as a family member of someone who has suffered a DVT, I have learned that you, the patient, must begin the cycle of receiving the best care possible.  You know your body the best, and if it is telling you something is wrong, even if it is as minor as a slight swelling in your leg, listen to it, and fight for the care you deserve.


1.) Earp JAL, French EA, Gilkey MB.  Patient advocacy for health care quality: strategies for achieving patient-centered care.  Jones and Bartlett Publishers 2003.

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