“My sister saved my life. The emergency room doctors were ready to discharge me, but she told them something was seriously wrong—she asked them–please figure out what was happening,” Josie, a patient I later advocated for, shared with me.
The doctors took a closer look: although Josie’s initial symptoms had been subtle, she had developed a large fluid collection next to her heart following a surgical correction of a thoracic aortic aneurysm–something that can potentially be life-threatening.
There are countless variations on this story.
“My father just kept asking questions–what was wrong with me? What else could this be? I think he saved my life,” an advocate colleague told me.
The patient accounts differ in the details but the theme is the same: patient accompaniment can save lives.
One patient once shared with me that since she has no family and her friends are older and not mobile so can’t easily accompany her to the doctor, she has been tempted to buy a large, inflatable “person” to accompany her to her appointments. “Just so I have someone with me, you know?”
Dr. Paul Farmer described patient accompaniment this way: “to go somewhere” with a patient, to break bread together, to be present on a journey with a beginning and an end.” He underscored the value of accompaniment in improving public health and patient outcomes.
A heartwarming yet tragic example of the benefit of accompaniment was shared with me by a patient safety expert, Johns Hopkins Bloomberg School of Public Health Professor Kathryn McDonald, who uses the following dramatic story as the starting point for her doctoral thesis about medical error.
They were two teenagers. One patient was a 17-year-old boy called Will; the other, a 17-year-old girl by the name of Charlotte. Both went to the emergency room in the same month, January 2005. Both complained of severe pain: one in the left ankle, one in the left knee. But the boy went to the emergency room by himself; the girl went to the emergency room with her mother.
Both were given the same diagnosis–muscle strain–and the same treatment advice. The boy was told, “This will improve with rest and time.” The girl was told the same thing but she was given some pain medication.
Eventually both were both diagnosed with a serious cancer of the bone known as osteosarcoma. The two became close friends thanks to a chemotherapy support group.
Will’s story
When Will’s pain didn’t get better, he waited to go back to the doctor because, as he later told Charlotte, “I trusted the doctors.” When the pain would get worse, Will thought, “Oh well, they said it was going to get better gradually.” It is important to note that the pain that characterizes this type of cancer tends to come and go, making diagnosis more challenging.
The consequences of Will’s inaction were devastating. In April of that year, he was rushed to the emergency room in an ambulance. He had labored breathing, because the cancer in his ankle had spread–metastasized–to his lungs.
Charlotte’s story unfolded very differently. She pushed her mom to do something: “This isn’t normal pain. I’ve been playing hockey my whole life and now it hurts so much I can’t even go to practice. Something is wrong with my knee.” Her mom reached out to the pediatrician, who ordered an MRI. The MRI showed osteosarcoma.
By March of 2005, Charlotte had already started chemotherapy. Because her disease was caught early, she had a 70% chance of survival. Will, on the other hand, had only a 30% chance of survival at diagnosis because the cancer had already spread to his lungs. In 2006, just a month after his 18th birthday, Will died. As of today –in 2025– Charlotte, now a young woman, is still in remission.
These two cases of osteosarcoma might be considered not just an illustration of a missed medical diagnosis but an excellent illustration of the importance of patient accompaniment. Indeed, this specific medical diagnosis, since it is a relatively rare disease, can be easy to miss – especially in a crowded emergency room–even more so today than in 2005, due to the heavy patient loads and overwhelming pressures on overworked ER staff.
What these two cases of osteosarcoma do beautifully illustrate is the power of accompaniment. The accompanied teen had a timely diagnosis; the unaccompanied teenager had a delayed diagnosis and a preventable and tragic outcome–death.
Data show that patients from low-income families are less likely to be able to advocate for themselves. Will came from a low-income background and his support system was weak. Because of her alcohol and drug use, his mom was not able to be there for him.
These cases are worth highlighting because they offer real life examples of the extensive medical literature showing the benefits of patient advocacy. Whether that advocacy is offered by a family member, friend, or professional, advocacy has been shown to increase adherence with medications, improve patient outcomes and reduce health disparities. The Health Equity Institute of Massachusetts has made increasing public awareness of the importance of patient accompaniment its systems change issue for 2025.
According to one Harvard Business Review article, such advocacy also has the potential to save the medical system billions of dollars.
We have come a long way since the time when friends and family were not always welcome to accompany patients.* Now, clinicians are much more likely to recognize the value of family and friends as a necessary part of the team.
If your symptoms aren’t improving–remember to go back to your doctor!
If Will was told to return to the doctor or to consider a second opinion if his symptoms didn’t improve, he didn’t hear that message. Some patients are afraid to seek a second opinion out of concern that this may offend their doctor. But that concern is misplaced. Most doctors welcome second opinions.
As patients and family and friends of patients, we want to be reassured, and as clinicians, we want to reassure. But this is key: don’t be afraid to be persistent and keep asking your doctor about your symptoms if they’re not improving. Taking a second, supportive set of ears and eyes to every appointment will help make you feel seen and heard.
A note to our readers: Lundberg Health Advocates wants to hear from you! Please let me know if you have a resource to recommend or a health advocacy story to share.
*Cathy Shine, a 29 year old with asthma, was separated from her sister, who was trying to advocate for her when Cathy was forcibly intubated at a Massachusetts hospital in 1979. This led George Annas, Professor of Law and Bioethics at Boston University School of Public Health, to found the Health Law Institute and to write a seminal book on the importance of patient autonomy, The Rights of Patients: The Authoritative ACLU Guide to the Rights of Patients. Cathy went on to become a vocal advocate for patient’s rights. An annual lecture, the Shine lecture at Boston University School of Public Health, is given in her honor.
Medical Disclaimer:
All patient and family names have been changed to protect patient confidentiality.
The suggestions given here are not intended as a substitute for the medical advice of your physician. The reader should regularly consult a physician in matters relating to health and particularly with respect to any symptoms that may require diagnosis or medical attention. For additional questions, please call your healthcare provider for reliable, up-to-date information on testing and symptom management of all medical concerns.
Photo credit: many thanks goes to Saiph Muhammad for his lovely photo posted on Unsplash.com.
