Mindful Practice and Lupus

Adapted from a presentation at the SLE Workshop at Hospital for Special Surgery


As group members entered the dimly-lit room, they were greeted with soothing, meditative music, creating a calm ambiance that set the tone for Dr. Ronald C.MacKenzie’s presentation. Dr. MacKenzie opened by introducing the concept of mindful practice, suggesting that it can be used as a tool for clinicians and patients alike and to enhance patient care.

What is mindful practice?

The concept of mindfulness is derived from the word “sati” which comes from an Indo-Aryan language (now dead) known as Pali. This word means “to remember.” Secondary meanings include “attention” and “awareness.” Jon Kabat-Zinn, PhD, an Emeritus professor at the University of Massachusetts, and a dominant leader and practitioner in the field of mindfulness-based stress reduction since its inception, has contributed a contemporary definition of the term. Kabat-Zinn describes mindfulness as “paying attention on purpose, in the present moment, non-judgmentally to the unfolding of the experience in life, moment to moment.” Also called “present moment awareness”, the concept has virtually become a movement with origins in Buddhist philosophy.

Dr. MacKenzie challenged the group to think about mindfulness as a universal human capacity, which we all have and may draw upon in times of stress, or on a daily basis. In this sense, mindfulness becomes a personal competence — a faculty — which we inherently possess and may tap into regularly. It helps promote clear thinking and open heartedness, which is vital to the caring role of healthcare professionals. Considered in this way, mindfulness is not associated with any religious or cultural-belief system, but is instead relevant to people as human beings. It helps to maintain awareness, moment by moment as one disengages from strong attachments to thoughts, beliefs, or emotions; in so doing, one develops a greater sense of emotional balance and well being.

A Case Example

Dr. MacKenzie introduced the group to Mrs. Johnson, as an example of how mindfulness —or its absence — can affect a doctor-patient interaction. Mrs. Johnson is a 45-year-old woman with a variety of symptoms who had been under the care of Dr. James, her physician, for several years. Her symptoms included generalized aches and pains and severe fatigue. Over time, various diagnoses were considered, including: rheumatoid arthritis, systemic lupus erythematosus, Lyme disease, chronic fatigue and fibromyalgia. Eventually all of these conditions were ruled out. Mrs. Johnson was finally diagnosed with a nonspecific auto immune disease - in part because the occasional test, like an ANA, came back slightly positive. In addition to her health situation, Mrs. Johnson had many other difficulties, including not finishing high school, going through a divorce, and considerable financial hardship. These problems have aggravated her chronic anxiety that has, in turn, resulted in a degree of depression.

On the day of her visit with Dr. James, she is at a particularly low point, both physically and psychologically. Reporting worsening pain and fatigue, she was also having difficulty getting up from her chair and was concerned about a skin rash on her hands and face. Dr. James is also having a stressful day. He listens, but feels that her reported symptoms sound familiar. He begins to approach Mrs. Johnson with the same mindset as before — that once again, the physical exam and testing would not reveal any abnormalities.

At this point in his story, Dr. MacKenzie prompted the group to pause; he pointed out how pivotal this moment was. There was a risk that Dr. James could be inattentive to relevant and potentially new findings — a trap that arises due to categorizing, rather than taking a mindful approach.

Dr. MacKenzie went on to say that a curious, mindful practitioner might notice that something is a little different about Mrs. Johnson this time. The ability to pick up on this subtlety depended on Dr. James’s implicit knowledge of Mrs. Johnson as a person, rather than some explicit knowledge that he had acquired about her over the years of prior interactions.

Dr. MacKenzie continued with the case example, revisiting this exchange, with Dr. James now taking a mindful approach. His present-moment awareness and engagement allows him to notice a subtle change — one that a new physician might not detect. The result of this shift in awareness stimulates in him a renewed curiosity about her. He notes that she is unable to stand easily from the seated position, a fullness in her abdomen, and various changes in her skin. Mrs. Johnson now has Dr. James’s full attention. He evaluates her without distractions from his day; his prior conceptions of her no longer muddle his view. With his mindful approach, he identifies the heliotrope rash and Gottron’s papules of dermatomyositis. Aware that this diagnosis carries a 3-fold increase in the risk of cancer, he was concerned about an underlying malignancy.

Results from laboratory studies reveal elevated muscle enzymes, strengthening his diagnostic suspicion. A muscle biopsy confirms the presence of inflammatory cells invading the muscle and associated blood vessels. Even worse, a CAT scan of the pelvis reveals stage 4 ovarian cancer, thus explaining her sense of fullness in her abdomen. This stage of ovarian cancer is associated with a less than 20% survival over 5 years.

To close the scenario, a follow-up appointment was made and he requested the presence of a family member and additional time for this meeting. Although Dr. James dreaded this subsequent discussion, to his surprise, Mrs. Johnson responded to the news about her condition, “I finally understand why I have been feeling sick all of these years.” Knowing that her current condition could not explain her long-standing symptoms, Dr. James was surprised that she was not devastated by this news. Instead, she was liberated by an explanation. Dr. James’s mindful approach at Mrs. Johnson’s prior appointment allowed him to open up and consider a wider range of diagnostic possibilities. Dr. James thus avoided falling prey to categorizing this patient based on their prior experience together. Indeed, he was demonstrating a competence defined by his ability to be mindful.

How is mindfulness achieved?

For many, the term mindfulness is linked to the practice of meditation. Meditation is a mental technique that cultivates intentional focus, used to strengthen human faculties to establish and sustain a deeper awareness of one’s self and one’s relationship with others. There are programs such as the mindfulness stress reduction program, described in Kabat-Zinn’s book, “Full Catastrophe Living.”[1] There are other courses in mindfulness including mindfulness-based cognitive therapy, dialectic behavioral therapy, acceptance and commitment therapy. All are presented in the form of exercises in which attention is sustained by concentrating on the breath, using a cycle of breathing with full attention on the activity. The focus on attention could be the body, a sound, or a visual focus.

Formal training may not be required by everyone who wishes to develop their capacity for mindfulness, but many people tend to have difficulty in maintaining focus due to problems, worries, etc. Therefore, training is often helpful. Dr. MacKenzie emphasized that this is a serious practice area with specified content. He continued to say that in the studies that describe its effectiveness, participants have gone through an intensive program. He made special note that today’s lecture is simply an introduction to the concept.

Dr. MacKenzie then led the group through a brief introductory mindfulness exercise in which participants focused on the experience of eating a raisin.

What are the benefits of mindfulness?

There are many ways mindfulness can assist patients as they recover from a medical condition or cope with a chronic health condition. It has been shown that mindfulness practice may:

  • Decrease perception of pain
  • Increase ability to tolerate pain (or disability)
  • Reduce stress, anxiety, or depression
  • Diminish use of medication
  • Enhance the ability to make (reflect on) choices
  • Improve adherence to medication
  • Enhance motivation to improve lifestyle
  • Improve interpersonal relationships
  • Alter biological pathways  (e.g. immune, endocrine)

Some conditions in which mindfulness has been shown to benefit patients include the following:

  • Pain management
  • Chronic depression, anxiety, stress
  • Eating disorders; addiction to cigarettes
  • Sleep disorders
  • Fibromyalgia

Dr. MacKenzie cited Kabat-Zinn’s clinical trial of mindfulness-based cognitive therapy in the prevention of recurrence of depression. The results showed a lower rate of relapse for the group that practiced mindfulness-based cognitive therapy, and that they did better over time than those who received usual care. He emphasized, however, that patients in this study underwent the full program developed by Kabat-Zinn.

Dr. MacKenzie also cited studies that showed the favorable effect of mindfulness interventions among nurses and physicians who had experienced professional burnout. Additionally, evidence from studies that focused on improving quality of care, shows that mindfulness practices can result in a reduction of medical errors. As one may imagine, routines can result in a state of mindlessness. Individual factors experienced by staff, such as being forgetful, tired or over engaged in multiple tasks, have been shown to account for over 60% of medication errors made in hospitals. Similarly, improved outcomes are related to wellness in the healthcare professional. A professional who is globally functioning well and who is in balance is less likely to make mistakes and more likely to be engaged in what they do, thereby increasing their effectiveness.

Another related area of interest involves pain management and mindfulness. Pain is the primary reason for visits to the doctor (20%). The traditional biological pain model is incomplete because it does not incorporate psychological, emotional and cultural considerations — all important determinants in the experience of pain. The mind-body connection integrates all of these factors. Feelings such as helplessness and hopelessness exacerbate pain. Anger and stoicism are coping strategies to distract the mind. 

Statistics show that using medication is still the dominant mode of treating pain. The US accounts for 5% of world’s population, but it also accounts for 85% of the world’s opiate use. In addition, the US accounts for 99% of world’s consumption of hydrocodone. Dr. MacKenzie asserted that mindfulness can play a role in reframing the experience of pain.

Research in mind-body therapies and chronic pain suggest fairly strong evidence of effectiveness of this alternative intervention. There is an array of types of pain, which differ based on origin. Pain may be somatic — from peripheral structures in the body (i.e. from a muscle of joint or the lower-back). It may also be visceral pain that accompanies conditions such as cancer or bowel disease, producing a different type of pain. Neuropathic pain is pain that results from damage to nerves (i.e. neuropathy). Although there are many medications that minimize pain, there are also various mind-body connection therapies that show effectiveness. Mindfulness practice is one such technique.

Can mindfulness be learned?

Ronald Epstein, MD, from the Department of Family Medicine and Psychiatry at the University of Rochester, has written extensively on mindfulness. His premise is that habits of the mind such as attentiveness, curiosity, and informed flexibility are all fundamental to the practice of healthcare and personal well-being.

Dr. MacKenzie described the following steps, adapted from Epstein’s research [2] , to developing a state of mindfulness and enhances effectiveness as a professional and a person:

  • Priming – setting the expectation of self-observation
  • Availability – creating physical and mental space for exchange
  • Asking reflective question – to open up possibilities and invite curiosity
  • Active engagement – direct observation and exchange
  • Modeling while “thinking out loud” – to make mental processes more transparent
  • Practicing attentiveness, curiosity, and presence

How are we doing in respect to these practices?

Dr. MacKenzie said that the study and practice of mindfulness is now more integrated in society than it has been in the past. He cited his search through the literature on PubMed, and his finding that only 10 papers on mindfulness were published in the 1970s. In this decade, however, he identified about 300.


Dr. MacKenzie ended his talk with a personal story, sharing that he has been a clarinetist in the Westchester Symphonic Winds for 23 years.  He recalled a rehearsal for their annual concert, in which his conductor, who was not satisfied with how they were playing, told the group that he wanted to hear them more clearly. He said that he would do so by stepping away from the podium to listen to sections of the music from outside the concert hall. Upon his return, the conductor was pleased with what he heard.

He asked two questions, “What happened” and “Why?” The group’s answer was that they played more slowly and that they were in better tune with each other. The conductor left them with this piece of advice: “Think beyond the notes, and just play the music.” This is an example of how mindful practice can make a profound difference, indeed.

About the HSS SLE Workshop

Learn more about the HSS SLE Workshop, a free support and education group held monthly for people with lupus and their families and friends.

1. Kabat-Zinn, J., & Hanh, T. N. (2009). Full catastrophe living: Using the wisdom of your body and mind to face stress, pain, and illness. Random House LLC.
2. Epstein, R. M. (2003). Mindful practice in action (II): Cultivating habits of mind. Families, Systems, & Health, 21(1), 11.

Summary completed by Melissa Flores, Masters of Social Work intern and SLE Workshop Coordinator

Edited by Nancy Novick.


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