Ernestine S. Pantel

Health Care Proxy Study - Subjects Sought

Dear Colleagues:

I am seeking participants for a study on the experience of health care proxies who have had occasion to make decisions for incapacitated patients. I would greatly appreciate your referring such individuals to me for inclusion in the study.  The Columbia University Medical Center IRB has approved this study. 

They can contact me by email at esp4@columbia.edu to let me know of their interest or you can provide the information to them directly.

If you would like to participate in the study, you are also welcome to do so. You may go directly to the website listed below to sign on to the survey.

Thank you all in advance for your assistance in this project.

If you have any questions, please fell free to contact me by email or telephone. This information is in the letter.

Ernestine S. Pantel, DrPH

If potential subjects contact me by email, the following email will be sent to them in return:

 
Dear Study Participant:

A health care proxy is a person who is appointed by patients to make decisions for them if they become unable to do so. All people in the United States have the right to appoint a health care proxy to make health care decisions for them if they become unable to make those decisions themselves. It is believed that having a health care proxy, who knows the patient’s wishes regarding medical treatment, will allow patients to have the medical care that is consistent with their values and preferences.

We are second year occupational therapy students at Columbia University, working with Ernestine S. Pantel, DrPH, who would like to know how well the health care proxy system works. We are asking that those who have been in a position to make health care decisions for another person tell us about their experiences. It is our hope that by better understanding the health care proxy experience, we can provide information to health care professionals that will help to insure that patients are treated in accordance with their wishes.

The questionnaire is available online. You can fill it out, and electronically send it to us completely anonymously. Your email address will not be sent to us when you complete and submit the survey. The website address is http://www.surveymonkey.com/s.asp?u=615742810914 which you can reach directly by clicking on this link or by pasting it into your web browser. There are a total of 35 questions that ask about your experience during the time you were making decisions for a patient. While we would like you to answer all questions, you do not have to answer any you don’t wish to. At the end of the questions, there is space for you to tell us anything else that you think will help us to better understand the experience that you had.

All information that you provide will be held in strict confidence. When information from the study is published it will be reported as grouped information. No one will ever be able to link any information back to individual participants. In fact, we are not asking for your name, where you live, the name of the patient, the place where care was provided, or the name of the doctors involved in that care. If you would like the results of the study, you can send a postcard to our sponsor, Dr. Pantel, separately with your name and address and we will send you the information. We will have no way of linking the postcard to the information that you provide to us.

Your decision to participate or to decline participation in this study will have no impact on the care that you may receive at the Columbia University Medical Center now or in the future.

If you have any questions about this study, please feel free to contact our sponsor, Dr. Pantel at 212-305-7354, or you can write to her esp4@columbia.edu. If you have questions about your rights as a participant in this study, you may contact the Columbia University Institutional Review Board at 212-305-5883. The board approved this study to assure that none of your rights as a study participant will be violated.

We thank you in advance for sharing your experiences with us.

Sincerely,

Aghogho E Ajueyitsi Shana M Kalichman Amelia R Paredez Renana Zombek

 

 

And Who Are You?

    “We know who you are, but you have to leave anyway.” These were the first words spoken to me as I sat in the room where Jordan lay in a coma. I was exhausted, having spent the last 30 sleepless hours traveling from Dijon, France, to this Intensive Care Unit in the New York City teaching hospital, where Jordan practiced medicine for half his life.  Although we all understood how sick he was, a couple we had known for many years and with whom we had traveled before, agreed to join us on a barge trip through Burgundy since Jordan wanted to do this so badly. He had made all the plans, researching hotels and barge companies, sights to be seen, and restaurants not to be missed.  We knew this trip would be his last.   
    As soon as we got to Paris, it was apparent that we had made a terrible mistake. Jordan had gone into complete denial about his health status, not even bringing a glucometer with him – a very dangerous act of rebellion for a diabetic, let alone a diabetic with a history of two embolic strokes, and metastatic cancer. By the time we arrived in Dijon that evening, Jordan’s cognitive abilities were becoming impaired. The next morning we boarded the luxurious barge that he had selected; however, his judgment, speech, and coordination continued to deteriorate as all of us wondered why we had bothered to come. We were also more than a little angry with Jordan for insisting on this trip and then sabotaging any chance that there might have been to make it enjoyable either for us or him.
    My attention returned the nurse who had addressed me. I stared at her in utter disbelief, thinking many things at once: Who are you? Who am I supposed to be? Why do I have to leave? Why would you even think that I would leave? Is this the way you talk to families of all your patients?  I reassured her that if anyone asked, I would tell them that she told me to leave, but that I was going nowhere. With that, she stalked out mumbling something about it being against hospitals rules and that the Chief of Service didn’t like families on the floor when he made rounds with the house staff.
    The ensuing events would have been hilarious, if they had not been so outrageous and the stakes had not been so high. The door to Jordan’s room was slammed closed by a very self-important Chief of Service. I watched him through the glass wall as he stood in the hallway lecturing residents and medical students. The door was then flung open and the entire entourage filed in wordlessly, stared at Jordan, and filed out. The door was again slammed shut.
    Five minutes later, the door was quietly opened by Jordan’s personal physician and friend of 30 years, who beckoned me to join him in the hallway. After a very warm and much needed hug, I was introduced to the Chief of Service who began officiously telling me about the course of treatment. I listened politely, told him that I was Jordan’s Health Care Proxy, and then informed him what treatment was acceptable, what he was to add, and what he could not do. I gave him reasons for my decisions and refused to be bullied. While the proposed course of action was for the most part excellent, there were special considerations given Jordan’s extremely complex medical history. In addition, there was my knowledge of what his wishes were regarding treatment which this physician could not possibly have known, but which had to be respected. This was my husband of 35 years he was treating, not some anonymous sack of protoplasm. It was my responsibility to insure that the person was not lost in the case. To say that this did not sit well with the Chief of Service is a monumental understatement.
    At this same time, I was directing a project to improve end-of-life care across New York State, part of a larger Robert Wood Johnson national initiative. I could not help but wonder what happens to others who don’t understand medicine’s complexity, who don’t know there are options, or what the options might be, and who don’t know that they control the decision to consent to or refuse treatment. This experience has spurred me to write about what happened to Jordan and me, with the hope that some day others might not be treated with the contempt to which we were both subjected that morning and throughout the last 19 months of his life.