(Editor’s Note: The following narrative is about a real patient. I have requested and received permission to tell his story. His name will not be used but he is aware that it may be possible for some who know him to identify who he is. The story will be told from my perspective. He would tell it slightly differently, I suspect, but the facts are accurate and the implications of his story and our relationship are significant for the future of health care. Over the past three years, he and I have become good friends. I have learned to respect and care for him and he for me. I have found him to be a bright, caring, but needy person. I think you will come to the same judgment as you read his story.)
It was Oct. 13, 2009. The morning was cold and raining – well, not really, but isn’t that the way every story should start? When I arrived at the hospital early in the morning, I had a number of patients to see. On the South Tower, I was met by several nurses, who said, “You can’t go into (that) room.” I asked why and they added because the patient said that he will kill the next doctor who comes into the room. I asked, “Does he have a gun?” They did not think so. I said, “Then let’s go see him.”
In my 39 years of practicing medicine, I had never had an experience like this, but I have dealt with many people who are frustrated and angry. Rarely is their frustration and anger because of something a health-care provider did to them, but it is often directed toward the provider because she or he is available. As I approached this man’s room, I realized that I could call security or the police and escalate this situation into a full-blown conflict. I also remembered Proverbs 15:1, which states, “A soft answer turneth away wrath but grievous words stir up anger.” I wish that I could say that I had always made the right choice in such matters, but that would not be true. As I have often said, “The other day I tried to walk on water and I got soaking wet.”
Here were the choices: join the battle and confront the frustrated, angry patient, thereby escalating the situation to a battle that would help no one, or diffuse the situation with a soft answer and find out what was really bothering the patient. As I walked into the patient’s room, I stood at the foot of his bed, introduced myself and asked, “May I listen to your lungs.”
This disarmed him because I think no one had ever asked permission to “enter his personal space.” A number of years ago a physician, in discussing a health-care provider who had “crossed the line” and had been inappropriately involved with a patient, said, “You know a license to practice medicine is a license to molest.” That was a startling statement, but it is true. The things that healthcare providers do with and to patients every day, under any other setting, would be illegal and would be molestation. That is why permission must be sought before examining a patient and why appropriate courtesies and barriers must be maintained.
The patient gave his permission for me to examine him, and I listened to his lungs. I then asked him several questions and listened to him for 30 minutes as he told me his story. As he talked, I understood why he had made the statement the nurses had reported to me. He was not homicidal; he was frustrated. Everyone wants control over their own life, and he had lost all control; the only power he retained was the authority over who and how a health-care provider could examine his body. Like all humans, he was exercising that power.
As I listened to his story, I realized that his greatest need was an objective means of establishing his self worth. I realized that he needed control over something in his life, and I realized that the only way that I could invest a sense of personal value in his life, through giving him control over something, was to give him power over me. Heretofore, health-care providers had had control over him, giving him a sense of worthlessness and dependency. If I were able to give him power over me, in a real and effective way, then he would begin to develop a sense of personal autonomy from which would come trust in the health-care system, confidence in me personally, and responsibility in himself.
But how do you do that effectively? Traditionally, health-care providers only give patients controlled access to the their time through an appointment process and with a fee associated with that access. When dealing with people who have a sense of self worth from other sources, this is acceptable, but when dealing with someone, who due to no fault of their own, had no social infrastructure – friends, family, job, etc. – it is inadequate and only compounds their problem. But what if the traditional relationship were turned on its head? What if this man were given uncontrolled access to my time, and what if that access were not associated with a fee? This would genuinely empower him to control his time and mine. He would have access at his choice, without an appointment and without a fee being attached. The only reason he would now have access is due to the judgment that he had personal value and worth, both of which made him worthy of accessing care at his discretion.
If that is the theory, how do you do it effectively? In this case is seemed simple. Access to me is controlled by telephones: office, home, cell. Therefore, I gave him my unlisted number at my office, my listed home phone number (which is the only home number I have) and my cell phone number. I told him to call me any time, any hour, for any reason. As only my family, colleagues, and friends have my cell phone number and my unlisted number at my office, this immediately put him into a “special group.”
Thus began a three-year long relationship that has become important to both of us. Every element of SETMA’s patient-centered medical home journey has been illustrated by this relationship. A number of novel events expanded our concept of patient-centered caring. One routine care issue is related to chronic pain. This is often a difficult situation for health-care providers because we are all confronted with patients who appear to use medications for reasons other than medical care. However, it is also the case that the Texas Medical Board is as concerned with under-treatment of pain as they are with the overutilization of pain medications.
This patient, who can now be more accurately characterized as “my friend,” required pain medicine treatment. We dealt with this issue by a series of steps:
1. Careful documentation of all pain medication usage.
2. Continuous efforts to decrease utilization of pain medications
3. Consistent and timely refilling of pain medications, which decreased the anxiety that delays in refilling medications would result in lapses of care.
4. Routine review of medication usage and the presence of the continuing need for pain medication treatment.
Two events challenged our treatment plan. First, my friend could not afford his medications, whether pain medicines or medications for other chronic medical conditions. As a result, not only did SETMA prescribe his medications, but we also paid for them. Through the SETMA Foundation, we were able to relieve the anxiety of his not being able to get his medication due to their cost. Once again, we found another way of investing a sense of value into our friend’s life: We invested our treasure.
Second, shortly after my becoming involved with my new friend’s life, he had another crisis. He was arrested and charged with a crime. The details are not relevant to this story except to note that after careful investigation, it was obvious to me that he had not done what he was accused of and a senior officer on the scene agreed. The case dragged on for two years and with incompetent legal representation and his inability to hire better counsel, and with threat of a jail sentence, which in my judgment he would not survive, he was convinced to plead guilty in order to get probation.
As so often seems to be the case, the less you have the more is demanded of you. Probation is not free and it is not cheap. If you cannot pay, or if you do not pay your probation fees, your probation will be revoked and you will be incarcerated. Here is the most novel of situations for SETMA and for our foundation. As noted above, I believed that my friend would not survive imprisonment, and I knew that he could not pay his probation fees. Suddenly, patient-centered care took on a new meaning for us. In that the primary function of the SETMA Foundation is to help our patients obtain health care when they cannot afford it, and, in that it was our judgment that our friend’s imprisonment would not only be unjust, but would be detrimental to his health, we asked ourselves whether the payment of his probation fees would be a legitimate expense for the foundation to pay. We judged that it would, and so for the past 14 months and for the coming 36 months, the SETMA Foundation has paid our friend’s probation fees.
SETMA’s Care Coordination Department has been active in our friend’s care. None of the SETMA Foundation funds can profit SETMA, but can only be used to pay the fees of other health-care providers who will not treat our patients without being paid. Whether it is his dental care, co-pays for providers outside of SETMA, costs of medications, transportation and other needs, SETMA’s Care Coordination Department has supported our friend’s health-care needs over these past three years. In fact, it was a recent event with the Care Coordination Department, which resulted in the writing of this column.
Nov. 24, my friend contacted me and said that he was very sick. I told him to come in on Monday without an appointment and I would see him. On Monday morning, he told me that he had no transportation, whereupon I sent a note to SETMA’s Care Coordination Department and they arranged for transportation. Our friend came to the clinic less than two hours later. The following day, I received the following note from him:
“… Thank you very much for seeing me Monday. After the injection and my second of three from the Z-pak, I’m feeling better. I don’t know why but when I get sick now, it really gets me down. For as long as I can remember I hardly ever got sick, but when I did it was pretty rough. A lot worse now. I thank you very much for getting me better. You are a gift from God and may He bless you, your family and staff.”
I responded to him: “You are a gift to me from God, as well. I have learned a great deal from you, and you have blessed this practice greatly by allowing us to minister to you.” In a note to my SETMA colleagues that day, I said, “I am sincere in telling him that he is a gift to us and not a burden. Sir Winston Churchill said, ‘You make a living by what you get; you make a life by what you give.’ This man has helped us make a life many times over. That is a great gift.”
This event was concluded with a note from our patient where he said, “Thank you my friend. My wish is that you get better also. If I heard you right, you said that you have been sick for a while. My prayers are with you. I don’t know what I would do without you, Ms. Rebecca, and Ms. Pat. All of you work so hard for my spiritual and physical well being. I hope that all of you realize just how much I appreciate all that’s done for me.”
This is the ultimate end of patient-centered medical home; now the one who is cared for becomes the caregiver, expressing concern for the ones who give him care. My thoughts drift back to Mother Theresa, who cared for those with the greatest needs and the least resources. Upon one occasion, a wealthy American spent two weeks with her. Departing, he said, “Mother, I would not do what you do for a million dollars.” Her response? “Neither would I!”
This is the response of “our friend,” once he read the above.
“This is a great read! By the time I got to the end I noticed a tear running down my cheek. We have been through a lot, my friend, and I hope and pray that you really know how much I appreciation you and the love I have for you and your staff.
“I think of you and the SETMA family daily. All of you are always included in my daily prayers. I thank God for you all daily. I honestly do not believe I would be alive without my SETMA family. Thank you for all you and your staff do. My love and respect is with you all.”