Article from Townsend Letter:
In the Spirit of Connectedness
by Aparna Taylor, MSc, ND

The definition of spirituality has evolved over time, more recently to include a broad spectrum of themes that involve a belief in a greater source and a sense of connectedness. It can also be defined as a personal journey to make sense of the human experience, either with or without a community of others, either practicing or not practicing a religion.

I wondered, how might spirituality, or acknowledging spirit, shape clinician interactions with patients in a way that can benefit individual care?

Yawar¹ discusses two realms of existence we have as human beings, the inner and outer realms.  The inner realm is the individual’s ideals through experiences such as love, awe and beauty, or interaction with the divine or transcendental experiences. The outer realm is the individual’s interaction with the world.

Why is this important?

In situations where questions of life and death emerge, such as birth, terminal disease, or illness (such as chronic tick-borne diseases), these inner and outer realms converge, and the questions are pondered more.¹ Patients may look for answers somewhere in the broad definition of spirituality for support and guidance. A clinician has the opportunity to create space for this aspect of well-being, despite the possibility of having different views from his or her patient.  One of the ways I aim to stay grounded with patients is to also ask myself what is important to me, what inspires, uplifts, or allows me to be ‘in spirit’?

There are rare occasions in my practice that allow an early intervention to tick-borne diseases. The majority involve long-standing, complex, and chronic health issues that are identified (at least in part) as related to tick-borne and other infections. Many of these individuals are unable to work, dealing with intractable fatigue, pain, and brain fog—among many other symptoms unpredictable by the day and sometimes by the hour. In some occasions, these symptoms impede the ability to get out of bed, prepare meals, and carry out activities of daily living independently. In these individuals, life and death and sense of purpose are foreboding.

Kim* (not her real name) would have extreme anxiety about whether the next medical appointment would provide relief and support, or failed symptom management and minimization of her concerns. This cast a shadow behind the looming financial distress that was another worry. She was overcome with thoughts of her mortality, and simple daily tasks were full of challenges. She expressed feeling relief when she found a Lyme literate clinician, though when recalling her typical visits, shared that “the doctor never sat down, she barely made eye contact with me and wrote the treatments onto a sticky note then would walk out. If I had questions, she told me to ask her front desk though they couldn’t really answer them. I felt guilty….I finally found a doctor who believed me, but felt lost and overwhelmed.” She felt compelled to follow all directions even though, in this case, she felt a lack of being heard, and the interaction was not one that benefited patient care.  In Kim’s case, creating space might simply have been being present with her, to listen to her needs in a way that she felt benefited her health.  This clinician, whether intentionally or not, was unavailable in a way that was meaningful to Kim.

In this population of people, many have become burdened with the physical and emotional challenges associated with their long-standing illness and suffering. A sense of purpose in life, whether spiritual or not, may continuously be left unfulfilled when chronic illness and symptoms overshadow every day. Yawar summarizes various definitions of spirituality as essentially “the ways in which people fulfil what they hold to be the purpose of their lives.”¹ It is not uncommon, in this population of patients seeking support for tick-borne diseases, for a sense of purpose to be hindered by the physical, mental, emotional, and financial challenges discussed.  Patients suffering from chronic tick-borne illnesses may experience their sense of purpose through a search for meaning.

What is the meaning of this illness, and the way it has altered life?

Why is there suffering, what is the meaning of this suffering?

There is value in accompanying an individual on their journey through the suffering to find meaning.  Kim had seen countless doctors prior to finding her Lyme-literate clinician. Most of those doctors concluded that her health issues and suffering were due to mental illness since they were unable to find a diagnosis that supported the symptoms she was experiencing. Though the cause of her symptoms was not mental illness, it became part of her symptom picture for multiple reasons.  There are approaches Cutcliffe discusses to support individuals experiencing mental health-related suffering,² which would first involve a foundational relationship to have the conversation.

Kim shared with me that her anxiety was mild in the past and now was the symptom overshadowing all other symptoms, and she was unable to find relief in the treatments offered, even with the Lyme-literate clinician. We determined that her experiences likely amplified the anxiety but were not the cause—with some other symptoms and her test results supporting a Bartonella infection. Ultimately, she expressed the value to her of a partnership with her clinician with the ability to share how she was suffering, which was meaningful to her.  Regardless of the limitations that prevented her previous Lyme-literate clinician from being able to support Kim in the way that she needed, there is empirical evidence that a simple action, sitting versus standing in a visit, has a positive impact on physician-patient interaction.³

What if the suffering itself served a purpose?

“Only through experience of trial and suffering can the soul be strengthened, ambition inspired and success achieved.”― Helen Keller

Keller makes a strong statement, which is not to say without these experiences strength, inspiration, or success is not possible, rather it is an example of contemplating the possibility of seeing value in the suffering itself.⁴ In this case, some of Kim’s mental health-related symptoms were a manifestation of a Bartonella infection that began to resolve with treatment. Overall, despite the multiple, chronic and complex health issues she had in addition to her extreme anxiety and infections, her sense of well-being was related to her feeling heard and involved in her health journey. This allowed her to express herself freely, which in turn resulted in a more accurate diagnosis and, ultimately, effective treatment.

Clinicians supporting individuals through this journey carry the weight of systematizing the complexity of physiological, environmental, social, and lifestyle factors involved in simply making an appropriate diagnosis, and devising interventions, all with compassion.  To the clinician treating this population, the effort in creating space for each individual to be heard on their terms may require a personal sense of purpose and well-being.

If the clinician is overworked, burnt out, or missing this sense of well-being, would it still be possible to create space for patients?

Or put another way, can clinicians show compassion and empathy for the patient experiencing suffering and searching for purpose or meaning, if the clinician is missing this for him or herself?

“Your purpose in life is to find your purpose and give your whole heart and soul to it” ― Buddha

There may not be direct answers to these questions, given the diversity in belief systems and ways of practicing that each clinician finds resonates with her or his lifestyle or personality.

Why might creating space for spiritual well-being help our patients?

Human existence has some commonalities regardless of spiritual belief systems. One commonality is the desire for a sense of well-being, whether it is physical, mental/emotional, or spiritual. In cases of illness, this well-being is influenced deeply by the interactions each individual has with the inner (ideals) and outer (worldly interaction) realms, as discussed earlier.  Most North American conventional medicine relies heavily on evidence-based, objective (outer worldly) realms for diagnosis and treatment and this often extends to the relationship between clinicians and patients.  Creating space for spiritual well-being takes into account the deep need for connectedness, as part of the human existence, especially at a time of vulnerability in illness.

How can a clinician create space for spiritual well-being, while attempting to tackle the complexity of individuals with chronic tick-borne diseases?

Kim felt a lack of connectedness to her clinician in three important ways:

1. Her doctor did not make eye contact or sit down.
2. She did not feel heard.
3. She did not feel included in decision making.

Creating a space for spiritual well being could begin in this case with basic connection, eye contact, sitting down with Kim creating the baseline for rapport.  In the current climate of telemedicine becoming more commonplace, this connection is possible through tone and ensuring questions are answered or addressed. Most conventional medical training does not include spirituality as central to medicine, though these basic communication skills are emphasized.

Spirituality may be considered as part of overall patient needs, though not directly discussed in most curriculums. Regardless of personal views, a sense of awareness of spiritual needs, and how best to meet these needs for each individual will benefit patient care. In a health survey, 67% of American patients polled felt doctors should talk to their patients about spiritual concerns, and in this group surveyed, only 10% reported their doctors had this discussion.⁵ Other medical traditions intertwine spirituality with medicine, serving the whole person with compassion, which in itself is a spiritual activity. With technological advances, the focus of medicine changed from a caring, service-oriented model to a technological, cure-oriented model, which has prolonged lives.⁶ The value of information gathered through evidence-based trials of larger groups of patients has lost the sense of service to each individual as a whole.  Most clinicians value empathy and compassion in medicine, and many link compassion to underlying spiritual values, despite common barriers to compassionate care (time and values of current medical culture).⁷

“Never worry about numbers. Help one person at a time and always start with the person nearest you.” — Mother Teresa

From a practical standpoint, the effort required to organize the complexity of our patients already places the clinician in a challenging position; this reinforces the need for each clinician to be mindful of his or her own well-being.  Puchalski wrote, “patients with serious or chronic illnesses endure all types of suffering – spiritual as well as physical.” She believes that “physicians are obliged to respond to—if not attempt to relieve—all types of suffering, including spiritual.”⁸ If we are to attempt to relieve all types of suffering for our patients, being able to discuss a patient’s spiritual beliefs and how they may affect the patient’s health is the beginning of creating space for this aspect of well-being. Regardless of individual belief systems, another commonality to the human existence is the connectedness created by compassion, empathy, and warmth. The broad definition of spirituality includes compassionate care; this in itself allows space to be created for patients so they perhaps would feel comfortable sharing their spiritual views.

“It’s a strange myth that atheists have nothing to live for. It’s the opposite. We have nothing to die for. We have everything to live for.” ― Ricky Gervais

There are concrete methods that exist to begin incorporating spiritual aspects into clinical practice⁹ that may or may not be relevant to all patients or doctors. The art of compassionate care in medicine falls into the spectrum of spirituality with Yawar’s definition of spirituality, as the sense of purpose. Whether a patient is agnostic, atheist, religious or spiritual, a clinician with her or his own sense of purpose can create a space of compassion and empathy and ask each individual: What is important to you?

This question, asked with compassion and empathy, creates a space of well-being. Asked in different ways and contexts, it has allowed me to learn the benefit of this space—supporting healing through the journey, sometimes with intense suffering, regardless of the outcome. The conversation need not be directly about spirituality, or even in person; rather the way in which we have a conversation is what comes across, along with valuable information that can benefit individual care.

The word Seva in Sanskrit means selfless service, possibly the most important part of any spiritual practice since selfless action has no expectation of outcome.

Rachel Naomi Remen, MD, in Kitchen Table Wisdom: Stories That Heal wrote: “Helping, fixing and serving represent three different ways of seeing life. When you help, you see life as weak. When you fix, you see life as broken. When you serve, you see life as a whole. Fixing and helping may be the work of the ego, and service the work of the soul.”¹⁰

Each individual we see in our practices brings a unique experience as part of their complex journey towards health, and our support and guidance require much more of us as clinicians, treating tick-borne diseases. Creating a space of well-being for our patients means we create that space for ourselves, with our own sense of purpose. Leonardo da Vinci said, “Make your work to be in keeping with your purpose.” This for us is a mountain to climb when treating tick-borne illnesses and the comorbidities that come with chronic health issues. The rewarding part of this mountain, this sense of purpose, is to find a way to encourage being in spirit, well-being, and healing while on the journey with our patients, regardless of the outcome.  Living near the Rocky Mountains in Alberta, their image to me is grounding, majestic, and a reminder that the journey itself, at times difficult, has rewards along the way. Whether climbing a mountain or supporting a patient with complex health issues, the path reminds me of our interconnectedness to each other, nature, and spirit; and all we can learn, if we allow it.

“The best things in life make you sweaty.” ― Edgar Allan Poe  

…(Unless, those things are Babesia infections….)

References:

1. Yawar A. Spirituality in medicine: what is to be done? J R Soc Med. 2001;94(10):529–533.
2. Cutcliffe JR, et al. Mental health nurses responding to suffering in the 21st century occidental world: accompanying people in their search for meaning. Archives of Psychiatric Nursing. 2015;29(1), 19–25.
3. Swayden KJ, et al. Effect of sitting vs. standing on perception of provider time at bedside: a pilot study. Patient Educ Couns. 2012;86(2):166–171.
4. Rawlinson MC. The sense of suffering. J Medicine and Philosophy. 1986;11(1), 39–62.
5. McNichol T. The new faith in medicine. USA Today Weekend. 1996 April 5–7:4–5. (Survey conducted February 1996 by ICR Research Group.)
6. Puchalski CM. The role of spirituality in health care. Proceedings (Baylor University. Medical Center). 2001;14(4), 352–357.
7. Anandarajah G, Roseman JL. A qualitative study of physicians’ views on compassionate patient care and spirituality: medicine as a spiritual practice? R I Med J. 2014;97(3):17–22.
8. Puchalski CM. Spirituality and health: the art of compassionate medicine. Hospital Physician. 2001;37(3):30-36.
9. Puchalski CM. The FICA spiritual history tool# 274. J Palliative Medicine. 2014; 17(1), 105-106.
10. Remen RN. Kitchen Table Wisdom: Stories That Heal. New York: Riverhead Books; 1997.

Author Bio:
Aparna Taylor, MSc, NDhas a love of nature and medicine and strives to help patients find a healthy balance on this journey. Growing up in Thunder Bay, Ontario, she received her Biology degree from Lakehead University then volunteered in hospitals in India and became a yoga teacher. After this gap year, she moved to Western Canada where she completed her Masters in muscle physiology and aging at the University of Calgary. While pursuing her PhD in molecular neuroscience, she re-awakened her passion for patient-centred medicine and became a Naturopathic Doctor.

One of her first patients in Thunder Bay inspired her to learn more about Lyme Disease and her path led her to ILADS, the International Lyme and Associated Diseases Society. All of her experiences have provided tools to incorporate the principles of Eastern and Western medicine, yoga, and mindfulness to individualize regimens for each patient based on individual goals.  Most of her practice is devoted to guiding patients who have chronic conditions, infections and tick borne illnesses. She believes that fundamentally, a balanced approach that brings calm allows room for patients to heal.  She shares her passion for learning, medicine and community by teaching at seminars, conferences and participating in research when she isn’t chasing and playing with her two young children and husband, all the while trying not take herself too seriously.

Consult your doctor before using any of the treatments mentioned in this article.

Reprinted with permission from the July 2020 Townsend Letter and Aparna Taylor, MSc, ND

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