I am half way through chemo-radiation at a top medical center, Massachusetts General Hospital in Boston, after attempting trans oral robotic surgery at Mount Sinai. The surgeon at Mount Sinai had done over a 100 of these surgeries and decided not to remove the tumor and send me for chemo-radiation. After getting consults at Mount Sinai, my home town Albany and Mass General it was clear Boston was the place. They treat hundreds of head and neck cancers a year here.

Much of what you described has been avoided here by having an experienced dedicated team that just treat head and neck cancers. The treatment is rough but the folks here work as a team and respond to each patient as an individual. A hotline lets you reach help 24 hours per day. My husband and I do our internet research and have come up with symptom solutions which the clinicians have supported. We’ve even come up with some they didn’t all know about.

As a healthcare business professional I sought out the second opinions and convinced my insurer that this was the best place to treat this cancer. The difference in my experience so far as compared to yours is dramatic. All I can tell anyone with a cancer diagnosis is go to the top place where they do a lot of what you have. They also have better outcomes. I have a great partner and advocate in my husband.

It’s not easy being away from home for 8 weeks but well worth getting the level of care I am getting.

I hope others will take heed.

Liz

A very sincere thank you for what you have shared. I intend to print this article and share it with some of the doctors and nurses I work with at the ENT clinic.

Wishing you continuously improved care and support.
Sincerely,
Emily

1. Implement better and uniform medical training.
2. Adhere to well established standards of care.
3. Perform regular records review to detect and correct medical errors
4. Employ only well educated and trained medical staff.
5. Counsel, reprimand, and educate staff members who make errors. Dismiss those who continue to make errors.
6. Develop and meticulously follow algorithms, set procedures and bedside checklist for all interventions and procedures.
7. Increase supervision and communication between health care providers.
8. Investigate all errors and take action to prevent them.
9. Educate and inform the patient and his/her caregivers about the patient condition and treatment plans.
10. Have a family member and or friend serve as a patient advocate to ensure the appropriateness of the management.
11. Respond to patients and family complaints. Admit responsibility when appropriate discuss these with the family and staff and take action to prevent them.

Itzhak Brook MD
Website: http://dribrook.blogspot.com/

Thank you so much for sharing your journey through your harrowing hospital experiences.
As a patient who has undergone 5 major surgeries involving major organs and fusions, I have come to know the hospital experience well. Unfortunately, I read your story and see your time spent there as status quo; what happened to you is a story shared by so very many hospitalized patients.
This is why I completely agree in your conclusion that it is absolutely essential for the patient to have an advocate who is willing and able to ask the vital questions concerning care and treatment. Even you, as a doctor, became vulnerable when pain, fear and medication kept you from being your own best advocate.
Thank you for your honesty and frank assessment of your hospital stay. I have read many books on the subject and most are written by folks like yourself, who were shocked to discover the shortcomings of their hospitalizations.
Wishing you future good health,
Diana Biebighauser

Thanks for this. We patients for a long time have been trying to get physicians to understand the patient experience from a patient point of view. For the most part, it falls on deaf ears (or blind eyeballs.)

I blogged about your experience in hopes others will recognize the support you give to the need for all medical professionals to better understand the patient’s experience:

http://ow.ly/4F2My

With appreciation,

Trisha Torrey
Every Patient’s Advocate

I am not able to visit the website/blog as often as I would like but I must say that the editors note “At first blush, you may wonder why a physician’s account of his illness and the frustrations he experienced merit a publication in this journal.” I find a bit disturbing.
Physicians are not the enemy here. They too are all patients at one point or another and they too are doing the best that they can with the knowledge and tools that they have given their training and the constraints that they face. My view of participatory medicine equates to shared decision making and mutual respect. Unless the silos are broken down here, as in other areas where health care challenges exist (are there areas where they can’t be found), we will never make sufficient headway towards participatory medicine.

Best wishes for a recurrence-free and joyful future.