Lott’s advocacy for compassionate health care is inspired by her own remarkable journey. Lott has a severe variant form of limb-girdle muscular dystrophy (LGMD), a congenital disease of which she first developed signs in early childhood, resulting in progressive muscle tissue deterioration. By age 17 she could no longer walk and transitioned to a wheelchair. At 31 she could no longer breathe on her own and now uses a ventilator. Lott asserts that although her medical condition affects every aspect of her life, it is not how she defines herself.
Holistic care includes attending to the mind, body and spirit of each patient. While the spiritual dimension of patients’ lives is commonly addressed in end-of-life care, Lott believes that attending to this domain has a role in all phases of healthcare delivery.
An Inner Resource
When patients are facing unexpected diagnoses with long-term challenges, it can create emotional dilemmas regarding how they envision their place in the world.
“I think it is important to help patients learn to face what is happening without self deception,” says Lott. “What can you do to help patients maximize their situation?”
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An inner spiritual resource can aid patients in facing day-to-day stressors. Lott shares an example of how she makes use of such a resource: “Having a debilitating disease and needing life support from human and mechanical interfaces present unending situations in which my life depends on how well I can govern my own responses to unwelcome chaos,” she said. “Prayer and meditation contain my feelings; it is the way I manage stress when my body has setbacks, machines malfunction or I am having problems in working with the people I depend on.”
She adds that the challenges in managing a chronic medical condition are often complex and ongoing. “You can’t pay for good health. When the body is weak, it can be hard to see what your body can sustain. When we are suffering, we should not deny the suffering.”
Negotiating interpersonal relationships, both personal and professional, is another area of challenge. With this, Lott also takes on a spiritual attitude. “My spiritual life is fundamental to my sustenance-I have to trust so many people with my body to survive. The question for me is how can one’s faith sustain one in finding tenacity, resilience and hope when facing medical challenges?”
Spirituality is also important for caregivers. “My husband is my main support,” Lott shares. “I don’t believe he would have been able to sustain the level of care and support I needed without a sense of faith. When you are caring for a loved one who has critical care needs, the level of support that is required is difficult-for every step forward, there are two steps back.”
Spirituality in Healthcare
Research on the role of spirituality is gaining increasing recognition. While it is a highly diverse area in which to garner quantifiable results, there is a growing body of research looking at the role of belief and religious affiliation in health and wellness.
Patients may believe in their faith as a resource as much as they believe in their healthcare providers. “Each person discovers their relationship with spirituality differently; the key is to be open-minded about the different paths,” explains Lott.
Occupational therapists can take practical steps to incorporate this area into assessment and treatment planning by including questions on the patient’s spiritual history. A few basic questions could include:
- What faith or spiritual orientation/tradition does the patient come from?
- What are the spiritual resources that a patient may be connected to? A church group, a support group or a group such as AA with a spiritual focus?
- What are the spiritual rituals that may be important for patients before they go for medical procedures or make decisions on medical intervention?
- What specific spiritual practices does the patient engage in?
There is no specific prescription to the spiritual life, Lott advises. For some people it is prayer or meditation; for others, it may be a set of beliefs about suffering. The key is making room for this area when it can be an aid to positive coping or provide hope through health impasses.
An evidence base does exist for improvement in health outcomes from spiritual practice-prayer, meditation, or centering exercises. Regardless of spiritual orientation, individuals’ regular rituals of prayer or meditation have been demonstrated to aid in stress relief, reduction in physiological distress and improvement in cognitive wellness. One of my previous articles in ADVANCE linked prayer and meditation to the relaxation response; more specifically, the repetition of calming, scheduled activities can stimulate relaxation to counter the stress response (see “The Relaxation Response,” Feb. 16, 2009).
In addition to her healthcare advocacy writing, Lott’s foundation conducts several study groups to promote self-reflection and the study of spiritual practice in daily life. A few basic methods, which can vary among different spiritual traditions, include:
- Simple meditation: This form of practice can be considered as a way of taking time out to calm the mind, to connect to oneself and self reflect. “This is the most common form of practice for people,” shares Lott.
- Prayer: This can be many things to many people-expressing feelings, asking for help, conveying gratitude. Prayer can also stimulate a sense of hope (see “Reaching for Possibilities,” July 21, 2008). “Prayer is a central activity in my life,” Lott says. “I pray when I get up, when I go to bed, when I need help coping.”
- Focused meditation: Meditation can also be a method to center oneself. Lott shares a few guiding questions in her meditation groups, “How can I increase my sense of peace, my sense of purpose, time management, etc.” (see “Focusing for Wellness,” June 21, 2010).
The Therapeutic Relationship
Spirituality has a pivotal role in the therapeutic alliance with patients, Lott adds. “I believe when I establish a human-spiritual connection with my doctors, they are able to see me as a human being and not just numbers on a set of lab work.”
Lott has been able to share her faith with her doctors, and a few of them have shared theirs with her. “I am a DNR patient,” she reveals. “I was able to speak to my doctors about what kind of intervention I would want, that would help me maximize my life. For example, I have agreed to chemical stimulation, [and]my doctor respected my choices. Eight years after intubation, I am still here, and living fully and in the present.”
In his book Do One Thing Different, Bill O’Hanlon explains that spirituality is a way to step back and put oneself in the larger context of the world. The spiritual path can be derived in a variety of ways-by connection to another, to a cause or to one’s community, to name a few.
Lott concurs: “Being a DNR patient refocuses my life to the present moment. How can I live moment to moment in a meaningful way? In other words, who are you going to be at this moment and how are you going to live with that?”
Holistic care requires an integration of mind, body and spirit. Integrating patients’ spiritual needs can aid them with coping and sustaining hope.
Lott’s own acquired model of coping is a striking one. “Whether much is going awry or right, I restore my inner serenity and well being each day by using prayer and meditation, and processing grief and forgiving,” she states. “No day seems to pass without my using these mental resources.”
Dr. Reji Mathew is a psychotherapist/clinical instructor at New York University. She is a disability advocate and freelance writer. The main focus of her work is to promote coping skills education for persons with chronic illness and disability. Her clinical expertise is in integrative psychotherapy, particularly cognitive behavioral skills training. Reach her via e-mail at her website: rejimathewwriter.com.