I was a good patient: Patient-doctor relationship

Nurse Practitioner Richard Ferris' story:

I am so damn tired of this...I am not my f----ing T cell count or viral load level and I wish to hell people would stop treating me like I am. It is degrading, and worse yet, it puts up roadblocks to communication between friends, medical providers, and the rest of the damn world.

I have been practicing AIDS medicine since the beginning of the epidemic. Today is very different and as a clinician I am a much happier man because of the advances in HIV therapy, but we have become a community that is still fixated on clinical numbers and not the person sitting in front of us and this had got to stop.

I recently felt compelled to change my AIDS doc because all I was a bunch of numbers to her. I was the "good" patient." She knew I took care of myself, was sober, worked out, and was nearly perfect with sticking to my meds. So I got the "greet them, treat them and, street them" kind of medical care all clinicians fall into now and then on a regular basis. So after numerous attempts of talking with her about my care concerns and not seeing things change I said the short version of the Serenity Prayer, which is "F--- it!", and found another provider who is wonderful. She treats me like a real person. I am a real person! She asks what is going on in my life and my numbers, while still important, are not the heart and soul of every visit.

I have had several other medical conditions overlooked because of my being a "good patient" that I had to handle myself. But I am lucky because I am an AIDS certified Nurse Practitioner and knew how to get the help I needed. What about the average person with HIV/AIDS without that sort of background? What happens to them? I assume they fall through the clinical cracks and suffer.

Maybe that is the lesson here: NEVER BE A GOOD PATIENT!

Read another story about an HIV patient who’s very aware of the relationship with his doctor.

Thanks to Richard for his post, at Richard’s POZ blog.

I was just starting to feel comfortable: A patient-doctor relationship

Mrs. J. looked baffled and hurt. I had just explained that I would no longer be her primary care doctor. I was leaving the field after just three years. "I have had three different primary care doctors over the past 10 years," she said. "You can't leave now. I was just starting to feel comfortable. I am getting older now. I can't keep changing doctors!"

Primary care is in crisis. Current primary care doctors are quitting, and medical students are pursuing other specialties. Primary care has lost its attractiveness as a profession because of poor compensation and plummeting job satisfaction. Primary care physicians are in short supply, and in Massachusetts, this problem has intensified in the wake of healthcare reform, as more than 300,000 previously uninsured individuals have joined in the search for available doctors.

As a former primary care physician, I am most troubled by the antagonistic state of the patient-doctor relationship. The system sets us against each other. Like many in the field, I chose primary care because I love people. I wanted to take care of the whole person, body and mind. I wanted the intimacy that comes with knowing your patients well and following them over many years. These goals are difficult to achieve in primary care today. After two years in my practice, I walked into an exam room one day and introduced myself to a patient. "We have met before," she replied, clearly aggravated. I was horrified and saddened.

Patients are angry, and rightly so. They feel frustrated by the inability to get timely appointments with their physicians, rushed by the 15-minute visits and the seemingly harried doctors, ignored when they do not receive letters with lab results or follow-up phone calls. They feel disrespected when they come to their medical appointments on time and then sit in the waiting room for 45 minutes. All of these feelings are justified. We are not offering high-quality care.

Doctors feel angry, too. We have too many patients. It is not uncommon for a full-time primary care doctor to have upwards of 3,000 patients. It is impossible to know all of these individuals well, to give adequate focus to each person's unique situation, to sift through the piles of paperwork and lab data daily. Our days are divided into 15-minute sessions, back to back. We move frantically from exam room to exam room, trying desperately not to fall behind in our schedule. We are given incentives to see patients as quickly as possible. We live in fear of litigation.

We are drowning, and in this overwhelmed state we lose our ability to take good care of people. Outwardly, we may feel resentful and burdened. Underneath, many of us feel loss, deep sadness, and personal failure.

This rift between patient and doctor is painful and destructive to the core of medicine: the therapeutic relationship. In an environment where patients and doctors don't know each other well and appointments are rushed, it is inevitable that more medical errors occur and that resources are wasted as expensive tests are substituted for communication. By contrast, research indicates that medicine practiced in the context of solid primary care relationships allows for earlier detection of chronic diseases, and, ultimately, better outcomes and monetary savings, to say nothing of patient and doctor satisfaction.

Dr. Brewster's Advice: Primary care physicians should be valued as team leaders and advocates, poised to help patients navigate the complex medical system.

Read another story on the patient-doctor relationship.

Thanks to Dr. Annie Brewster for the source OpEd in the Boston Globe of May 29.

Different kinds of healing: Elective surgery for quality of life

Question: My patient, a devout Catholic, is considering a risky radical abdominal surgery that can't cure her condition but may extend her life for a year. She says she's okay with either outcome, living longer or dying in the Operating Room. I believe she's sincere, even though her daughter feels she's being talked into the procedure by the surgeon. Now the daughter has asked me to tell her mother how horrible the surgery is and that most patients suffer greatly.

I'm sympathetic to her concerns because I've cared for several patients who underwent this surgery and none of them fully recovered. But it's not my place to explain the risks and benefits of surgery to the patient or to intrude on her relationship with her physician. How should I handle this? -S.N., Wisconsin


Answer by Joy Ufema, RN, MS:
This doesn't sound like a patient who's being coerced into doing something she doesn't want to do. Ironically, if she were to choose an intervention and died soon, the daughter could do a complete turnaround and worry that her mom gave up without pursuing all options.

Explain to the daughter that you can't discuss the odds for recovery because every patient is different. Instead, encourage her to talk with her mother in depth about her beliefs and goals. Offer to sit in on the conversation if they wish. Let the daughter hear her own mother discuss her position as a patient with a serious illness. Then support them both, regardless of the outcome.

Advice to family members who are patient advocates: Educate your loved one about the choices, then let them make the important decisions that affect their lives

Browse for related stories in the index at the very bottom of this page, or read an elective surgery story.

Thanks to Joy Ufema for the source article in the January issue of Nursing 2008.

Susan Sontag's choice for aggressive care

David Rieff's story on his mother, Susan Sontag
What my mother wanted – which was to undergo any treatment, no matter how terrible, that promised a cure for her disease – would probably have been viewed skeptically by a physician schooled in what Dr. Jerome Groopman calls the "bean counting" of evidence-based medicine. But doctors like Nimer and Groopman hold that their mission is to try to treat their patients as their patients want to be treated until doing so can be called with assurance (rather than in terms of probability alone) medically futile.

Obviously, there is a cost to this. In opting for treatment – in her case, a bone-marrow transplant – my mother suffered far more physically than she would have had she opted for palliative care alone. But in honoring her wishes, without for a moment understating the risks, her doctors opted for treating her in the full, human sense of the word.

Advice: Find a doctor who takes to heart your preferences about risks and benefits, and the degree of aggressiveness you want in your care.

Browse for related stories in the index at the very bottom of this page, or read another story from David’s book.

Thanks to David Rieff for the source story in Sunday's New York Times Magazine, drawn from his book, Swimming in a Sea of Death: A Son's Memoir.

She wanted the science as well as the magic: Susan Sontag's patient-doctor relationship

David Rieff's story:
When my mother [Susan Sontag] found out she had myelodysplastic syndrome, the terrible blood cancer that eventually took her life, she oscillated between numb despair and acute panic. When she was panicked, nothing those who loved her did or said could calm her down, let alone console her. And yet we soon learned that if we could reach Stephen Nimer, her principal physician at the Memorial Sloan-Kettering Cancer Center, by telephone, or if, better still, Dr. Nimer could make the time to see my mother, however briefly, her awful distress would abate – at least for a while.

Observing my mother's exchanges with Dr. Nimer, I could not help wondering why what he said consoled her. For he never played down the lethality of the disease, nor did he hold out false hope. Doubtless, Dr. Nimer's long experience with gravely ill people, the hard-won human skills he acquired over decades of practice, played a central role. The comfort my mother derived from speaking with him was also due to her own very traditional conception of their relationship. She had no time for alternative medicine, nor did she believe that her will would somehow be strong enough to counter the scientific realities.

But my mother's relationship with her principal doctors was only fully effective because in some ways it was shamanistic. Of course, she wanted the science as well as the magic….

Advice: Find a doctor who knows both medical science and the magic of consolation.

Browse for related stories in the index at the very bottom of this page, or read a compassionate care story.

Thanks to David Rieff for the source article in today's NY Times Magazine, drawn from his book, "Swimming in a Sea of Death: A Son's Memoir."

I’ve never received a thank-you note: A lupus patient's advice

Christine Miserandino has learned a thing or two from her frequent doctor's appointments for lupus. She writes about her illness on her web site, and says that before each appointment, she fills out three index cards: one with any new problems she needs to tell her doctor about, one describing her current symptoms, and a third with specific questions for the doctor.

She says this gets her better care. "My doctor is busy, and I have to respect that he has 40 patients in one day," she says. "If I don't go in with all my questions written down, I'd be rambling all over the place."

Doctors often schedule appointments in 15-minute increments. Sometimes you'll need much more than that. Christine says she always warns the appointment secretary when she'll need extra time, and asks whether a certain time of day (such as the last appointment) would be better.

Christine says she doesn't shy away from asking tough questions -- on the contrary, she asks lots of them and sometimes questions her doctor's recommendations -- but she always does it politely. Plus, she fosters a relationship with her doctor because she knows that to a great extent, her health depends on him.

"I do care, because I want him to care about me. I do bring cookies at Christmastime. It's a relationship you have to foster like any other."

Once, when her doctor went above and beyond what he had to do by visiting her in the hospital twice in one day, she wrote him a thank-you note. "He said to me, 'In the 20-odd years I've been doing this, I've never received a thank-you note. I always hear the negative, never the positive.'"

Browse for similar stories in our index at the very bottom of this page, or read a patient-physician miscommunication story.

Thanks to Elizabeth Cohen and Jennifer Pifer for the source story via CNN.