Challenges and Solutions

Narratives of Patient-Centered Care

Judith Belle Brown, Tanya Thornton, Moira Stewart

• Publisher: CRC Press
• Year: 2017
• ISBN:
  9781315346267
• Edition: 1
• Topic: Medicina
• Subtopic: Salud pública, administración y atención

The foundation of patient-centered care is the patient-professional relationship. By exploring both the disease and patients' unique experience of illness, healthcare professionals take into consideration their individual needs as well as their emotional and physical concerns. Using narratives to describe experiences of patients and professionals, this book reveals the four interactive components of the patient-centered clinical method: exploring health, disease and illness; understanding the whole person; finding common ground; and enhancing the patient-doctor relationship. The concluding chapters illustrate ways in which all four components interact with and complement each other and can be used in unison to the immeasurable benefit of both patient and professional. The stimulating narratives are all based on recent developments in the theoretical model of patient-centred clinical care. This wide-ranging, thought-provoking text is highly relevant to a wide range of healthcare professionals as well as medical educators and healthcare students. For physicians, narratives provide insight and illumination of what it truly means to be patient-centered. They also help clinicians to examine, in a reflective manner, what it means to be a healer. From the Introduction

1 Narratives Illustrating Component I:
Exploring Health, Disease and the Illness Experience

1 Loss of Voice – Loss of Self

Michelle Levy, Judith Belle Brown and Tanya Thornton

It was my first day back after being on maternity leave. My inaugural patient was Silvia, a 51-year-old woman I had known for five years.

When I last saw Silvia a year ago, she had been experiencing a sore throat, hoarse voice and persistent cough for six weeks. We had tried standard treatments for a viral illness, allergies and allergic rhinitis with little success. At our last visit, Silvia expressed how she was finding it difficult to fulfill her role as a teacher. By the end of the workday, her voice had all but disappeared. “I am just so hoarse. I lose my voice. It’s awful!„ Silvia stated with exasperation. As I went off on my leave, I arranged for her to have a laryngoscopy with subsequent follow-up by the locum covering my practice.

Now one year later, in reviewing her chart, I read in detail everything that transpired during my absence. Silvia had attended the clinic for multiple visits. What I had viewed at the time as a self-limited or easily treatable problem had continued to intensify and was still without a clear diagnosis. Silvia’s symptoms escalated. On a good day she could speak in a whisper. Her coughing episodes became more debilitating. “It is always worse in the morning,„ she explained wearily. “Sometimes it can take me one to two hours just to get up, shower and dress. Ventolin helps a little with my shortness of breath, but nothing helps with the cough.„

In the past year, Silvia had been seen by multiple specialists, including a general internist, a respirologist, a neurologist, an otolaryngologist, a speech therapist and a psychotherapist. After extensive blood work, a laryngoscopy, a bronchoscopy, CT scans, pulmonary function tests and an MRI, there was still no real explanation for her ongoing symptoms, and no relief. While there were subtle findings on some tests, nothing was diagnostic. She was given a provisional diagnosis of functional aphonia and questionable asthma.

Silvia’s entire life had changed. Previously employed as a teacher, she was now unable to work. On most days she could speak no louder than a whisper. Although Silvia had continued with speech therapy, which at times alleviated her symptoms, she would inevitably plateau or relapse. A one-time avid athlete, she now exercised only as tolerated. And of course, she went to medical appointments. With no clear diagnosis, but some “soft signs„ on various tests, she continued the round of follow-up visits with the specialists and repeated testing every 3–6 months.

My attention returned to Silvia, sitting before me. In exasperation, she recounted her last visit with the general internist, who had raised the possibility of depression contributing to her symptoms. “I feel like they are all giving up on me, that it’s all just in my mind,„ she said despondently. Silvia explained that during her visit with the internist, she became frustrated and tearful by her entire situation.

“Do you think you are depressed, Silvia?„ I asked.

Her head jerked upward and our eyes locked. With a piercing glare she asserted, “Oh, I am very frustrated by these unexplainable symptoms! My life is extremely limited now and I find that very upsetting. But I am not depressed. If anything, I’m more worried that we don’t get any answers!„ There was no question in her mind that how she was feeling was the result of what was going on, not the cause.

“What worries you the most?„ I asked gently. “It’s just the not knowing,„ Silvia replied, her eyes filling with tears.

As we discussed her situation further, Silvia described how she would almost prefer to learn that she had some terrible disease, just so there might be a treatment, or at least an understanding of what would transpire in the future. Without a diagnosis, no one really understood what she was experiencing – not her friends, not her family, not her previous employer, nor the disability company. And now she felt, maybe not even her health care providers. Silvia felt disconnected from those around her who had no comprehension of her suffering. It was a lonely existence.

Prompted by her psychotherapy sessions, Silvia began reflecting. She pondered how her future months and years would unfold. Silvia had come to realize that she was probably never going to be able to teach again. Nor would she be able to exercise as she had done in the past. There would be no more hiking trips with her 20-year-old son, no long walks in the evening with her husband. She wasn’t really sure who she was anymore. “I’ve not only lost my voice, but I fear I am losing myself,„ whispered Silvia, her voice faint and weary. As I sat there listening, it occurred to me that Silvia was almost describing word for word the illness experience of a patient without a definable disease: the frustration of not knowing, the isolation from previous supports, the sense of disconnection, the loss of self.

On further discussion, what Silvia really wanted was a “game plan.„ Silvia had come to the realization that whatever was going on was not about to resolve quickly. “So I just need to learn to live with it,„ she said with conviction. Silvia demonstrated remarkable insight into her situation and viewed the psychotherapy sessions as key to her coping. She was coming to terms with the knowledge that she would never teach again and was actively exploring other employment options that wouldn’t rely on her voice. Silvia explained how she was trained and certified in general accounting. Although she hadn’t practiced for years, and would need to retake some exams, it was a career she both excelled at and enjoyed.

Finally, we discussed Silvia’s expectations and the next steps regarding her medical visits. She would be following up in three months with her internist, who would repeat the CT chest and pulmonary function tests. At that point, she would also have an appointment with the respirologist for a CT scan; if the still showed some inflammation, the respirologist would consider a lung biopsy. In the meantime, Silvia was keen to continue meeting with her psychotherapist and to see me monthly to help coordinate her care. In the end, Silvia admitted she felt “better able to cope„ and “more in control.„ Although still frustrated and unsure how to deal with those who doubted her symptoms were real, Silvia was optimistic that she would be able to find new employment and activities to replace those she sacrificed.

This case highlights how patients struggle to cope when suffering an illness without a definitive disease. When a diagnosis is not readily forthcoming, patients may become increasingly frustrated and start to question themselves as to whether it is “all in my head.„ This can be exacerbated by others who voice similar doubts – family, friends, employers and health care providers. Patients may believe that an actual diagnosis would be a tremendous relief, even if frightening, just to know what the “disease„ is and to affirm that they are “not going crazy.„ The sense of disconnectedness and loss of self can be profound and prompt existential inquiry, such as: “Who am I now that I am sick?„ This case also illustrates that exploring the patient’s illness experience, while not solving the physical symptoms, can be beneficial in terms of alleviating fears, helping the patient to cope with the experience of illness and by imparting more control over her journey of suffering.

2 The Lonely Journey with Lupus

Ascia Hassan Abdi and Judith Belle Brown

“I can’t believe that I’m in a hospital and dying. I have been diagnosed with systematic lupus erythematosus. I never thought this would happen to me, I never included it in my plans.„ Noria paused briefly to stop the tears that were running down her cheeks. “The internist talked to me openly,„ she continued. “He told me,‘The disease is pursuing a virulent course, leading to serious impairment of the kidneys.’ I can’t bear to think of myself on a dialysis machine for the rest of my life.„ Noria sobbed uncontrollably. Her eyes filled up with grief and horror. I reached out and touched her hand. In my mind I was thinking that this moment was one of those times when even the most empathetic words would have little effect on a patient. Maybe just listening could somehow ease her suffering.

Noria had just turned 18 years old. Along with her mother and sister, she moved to Canada four years ago because of the civil war in her native country. Noria recalled the brutality of the war, the loss of so many relatives and friends. She did not know her father’s whereabouts. The last time she saw him was a morning in May, when he dropped her off at school. Noria waved goodbye as usual, thinking that she was going to see him at suppertime. That was their last contact before she left her country. After much hardship, Noria reached Canada, where she adapted quite well to her new environment. She learned the English language easily and made many friends. Sometimes I saw Noria in the mall near my office, chatting and “hanging out„ with her friends, laughing at everything like so many teens of her age.

When I went to visit her the following day at the hospital, she looked thin and worn. Noria gazed at me with empty eyes. When I asked her how she was feeling, Noria answered me in a soft voice, “Not well, but I am glad to see you. You are my doctor; maybe you can explain to me some of the words that the internist told me about my disease.„

Her doctor had explained to Noria that she had systematic lupus erythematosus (SLE). For her this was just a long name, with an even longer list of complications. I explained to her that this was an idiopathic autoimmune disease affecting multiple organs. The only thing Noria could really comprehend was that this disease was killing her. The tears streamed down her cheeks. She was anxious and there was desperation in her voice. Noria was confused and unable to manage the details. She had never heard of anyone in her family who had this disease before. “I am trying to understand why it chose me? Why it waited for my eighteenth birthday? Why couldn’t it have happened maybe a little later in my life?„ She paused to rest a few minutes, and then her anger and frustration was revealed. “This disease has cancelled all of my aspirations, dreams, hopes and happiness. I am in a new world, the world of the sick, the world of illness, the world of pain and suffering.„

Noria’s anger and desperation was palpable. I let her talk and talk without interruption, just nodding. I was feeling a bit helpless myself and felt at a loss to provide any meaningful advice or words of comfort to soothe her pain, which was apparent at multiple levels.

In the next days, when I visited her at the hospital, she was becoming more depressed and withdrawn, with little interest in life. In addition, Noria had developed debilitating joint pain in her hands that was resistant to anal-gesia. In the ensuing days, the pain intensified. I suggested that she talk to her joints, as they were listening. At first, Noria dismissed this, saying that it was “a crazy idea.„ She doubted such activity could have much effect. On second thought, since no other treatment was helping, Noria agreed to try it. She began daily conversations with her joints. Noria started talking about all the good times they had experienced together as a whole body, without problems, living in harmony. She recalled how she used to listen to music, dance, go for walks with her friends or spend long hours on Facebook hanging out with friends. Now she was too weak to talk, to walk. To move even a “finger„ was an excruciatingly painful process.

Noria explained that sometimes even thinking was an exhausting process. On alternate days, she received dialysis for at least seven hours. On the Dialysis Unit she made some new friends, those with end-stage kidney disease, like herself. Noria doubted that her old friends would ever understand why she embraced these new friends, nor would they ever understand how much she shared with them and the deep comfort they provided during this difficult time. These new friends were in the same situation, the same world of despair and solitude. They shared the same hope of waiting and wishing that their disease would vanish the next day, a day that would never come.

The following week when I visited Noria, she talked about how she did not like to answer the telephone, or to see anyone. Painfully, Noria described how she did not feel that she had any connection with her previous friends or past life. She did not want pity. Instead, she wanted everyone to remember her the way she was before: healthy, happy and with a smile for everyone. She told me, “I am comforted in my bed. It gives me a hug of welcome back. I am able to ease my pain a little bit by lying down. I feel I am 90 years old, with arthritis in all my joints and uncontrollable blood pressure. My kidneys are on dialysis and I am all puffy with edema.„ Noria sighed deeply and continued, “The scary part of the disease is to feel so alone in the dreadful and helpless journey of this illness. It is a journey that you do not wish any companion … I do not want anyone to suffer as I am. I want to say more, about the pain of mine but … tomorrow is another fight between lupus and me. I have to spare some energy for the next battle. The war is not over yet. But I am glad you are here with me.„ In this precious moment we both smiled, and I experienced a surge of compassion for Noria, along with a ray of hope.

I have always believed that a patient’s role is to tell the physician what hurts, and the physician’s role is to fix it. But during this journey with Noria and her illness, she gave me much more than I had given her. She gave me her grateful heart, a chance to enhance my self-awareness and at the same time have a broader understanding of the task of medicine. I no longer feel uncomfortable in expressing compassion and understanding toward the suffering of a fellow human being nor of being patient-centered in the truest sense of the definition.

3 Frozen

Joshua Shadd

Dr. Parvinder caught himself sighing as he walked slowly down to the clinic. He remembered hearing someplace about “heartsink„ patients – the patients whose names made your heart sink as soon as you saw them on your appointment list. Although he had met her only once, this described his reaction to Mrs. Gregor perfectly.

Dr. Parvinder’s only previous meeting with Mrs. Gregor was six months earlier – when, like now, he was covering for her usual physician. It was an appointment he remembered clearly. Hers was a memorable story. Five years earlier, at the age of 69, she had been diagnosed with breast cancer. Following a lumpectomy, it was recommended that she undergo adjuvant radiation or chemotherapy. The idea of these cancer therapies terrified her, and she decided against them, holding onto the thin hope that surgery alone had been curative. Eighteen months later, she developed back pain. Eighteen more months passed before she mentioned this to her physician. The X-rays seemed like a formality. The foreshadowing was too strong: metastatic breast cancer. There would, of course, be no chemotherapy.

Since then, she has been haunted by a never-ending combination of symptoms that, for her, were deeply intertwined. Pain. Nausea. Difficulty swallowing. Fatigue. All of these symptoms fluctuating constantly and unpredictably. None responding more than marginally to anything her doctors offered. And all wrapped up in several layers of the anxiety and depression that had plagued her since the birth of her second daughter nearly five decades ago.

All of this ran through Dr. Parvinder’s mind as he flipped through her chart before entering the room. Perusing his colleague’s recent notes, it was apparent that little had changed since their first encounter. A recent CT scan showed stable disease. Medications for pain and nausea had been adjusted up, then down, then up again. He was disappointed, though not surprised, to read that she had not followed through with the psychiatry referral that he had made for her six months ago. He knew that today’s appointment would not be short, and it would not change anything.

He put on a gentle smile and entered the room. Mrs. Gregor mumbled hello, but did not meet his gaze. She behaved as though she were trying to avoid disturbing the air. Dr. Parvinder was relieved that she did not look acutely ill. In fact, she looked no different than she had half a year ago. Mr. Gregor, a retired military officer, rose and shook Dr. Parvinder’s hand firmly. He was a faithful companion at each of her appointments.

The three settled into familiar roles, with Dr. Parvinder listening attentively as Mrs. Gregor described her symptoms and Mr. Gregor occasionally interjecting with his observations. When Mrs. Gregor commented on how difficult she was finding it to cope with everything, Dr. Parvinder took the opportunity to ask about the psychiatry referral. For the first time that afternoon, Mrs. Gregor did not reply. After a pause, her husband responded on her behalf, and said in a surprisingly frosty tone, “Let’s just assume everything from the neck up is taken care of, okay?„ Dr. Parvinder, understanding that there would be no common ground on that issue today, moved on to another topic. He feared that he was implicitly endorsing a destructively false mind/body dichotomy by asking about her pain without discussing her suffering, but what could he do? His colleague’s notes made it plain that she shared the same frustration: everything from the neck up was clearly not taken care of, and hadn’t been for a long time.

During his initial visit with Mrs. Gregor, she told him about when she last felt well. It had been 10 years ago, when she was given a combination of antidepressant medications by a “psychiatrist who made me laugh.„ Then they moved. First to a new city for her husband’s work, then across the country to where her younger daughter lives, and then to yet another city where her eldest daughter lives. The same medications prescribed by other doctors never seemed to do the trick.

Her support system was quite thin. As a military family, they had always moved often, and that pattern evidently continued into retirement. She had acquaintances all over the country, but no close friends. Her daughters were supportive but had families of their own. Her husband was her stalwart, but he openly ackn...