Spirituality and Spiritual Care of People With Chronic Neurologic Illness

Studies have been performed to examine the role of spirituality in treating and supporting individuals with chronic illness. However, little has been written about the specific spiritual needs and concerns of people with neurologic conditions and their family members and caregivers, and there is scant research available to direct the treatment of spiritual and moral distress in these populations.^1,2 This article explores the nature of spiritual concerns experienced by individuals with neurologic disorders and their families, and posits possible roles of neuropalliative care providers and chaplains in addressing these needs.

There is confusion among the public as well as medical providers regarding the difference between religion and spirituality. Religion is defined as “the belief in and worship of a god or gods, or any such system of belief and worship.”³ Spirituality has been defined as “a dynamic and intrinsic aspect of humanity through which people seek ultimate meaning, purpose, and transcendence, and experience relationships to self, family, others, community, society, nature, and the significant or sacred.”⁴ Spirituality is expressed through beliefs, values, traditions, and practices.⁴ As such, spirituality deals with existential questions and the search for meaning in one’s life.

Spirituality in Neuropalliative Care

One might reasonably ask why spirituality is of particular concern when caring for individuals with neurologic conditions. Such conditions affect the mind and soul as well as the body. The progressive nature of many neurologic diseases results in changing symptoms and the need for constant adjustment in making meaning out of experiences. Loss of function is often sequential, and may involve the loss of employment or career, ability to drive, ambulation, and the option of living independently. Each loss requires a readjustment in assignation of meaning by the patient and family members, who experience their own successive series of changes as they adjust to the changing needs of their loved one.

Furthermore, these conditions are often unpredictable in nature and affect each individual differently. Treatment for some of these diseases, such as Parkinson disease (PD), is limited to addressing symptoms rather than effecting a cure, which may result in feelings of hopelessness and demoralization. Many neurodegenerative conditions are isolating by nature, making it difficult to socialize with others due to such symptoms as mobility restrictions, vocal changes, sialorrhea, incontinence, or difficulty feeding oneself. Embarrassment may lead to self-imposed isolation.

Specific Spiritual Challenges Associated With Neurologic Illness

Spiritual challenges related to neurologic illness involve grappling with the meaning of life and making sense of a multitude of life changes. These challenges fall into several distinct categories, including the following:²

- Existential issues

- Self-image

- Conception of personal identity

- Interpersonal relationships

- Grief

Patients and their care partners may find themselves pondering “Why me?” or, perhaps, “What did I do wrong in my life to make this happen?” People with strong religious beliefs may experience a sense of being judged or punished for past actions.

Such questions may result in remorse and self-blame for some; others may struggle with the randomness of life, leading to anxiety and feelings of powerlessness. Other existential tasks include struggling with a sense of meaninglessness or wondering about the meaning of life in the face of such randomness. Issues related to one’s concept of self also arise, including “Who am I if I am no longer able to identify myself by my former career or my role as the breadwinner for the family?” or “What is my role in society now that I am no longer able to work, drive, walk, and speak clearly?” Such questions may lead to a redefinition of one’s concept of self or to depression or anxiety resulting from the failure to resolve these issues sufficiently.

Existential Challenges

Eight common existential challenges have been described in the literature: death anxiety; grief, loss, and change; the loss of dignity; freedom of choice and control; fundamental aloneness; the quality of relationships; the meaning of life; and the mystery of the unknowable.⁵

Death anxiety may be particularly pronounced in individuals with malignant brain tumors, amyotrophic lateral sclerosis, or Huntington disease.⁶ Loss of dignity affects many individuals with neurologic illness at some stage of their illness, as assistance is often needed with bathing, dressing, and toileting. For example, Lohne et al⁷ studied loss of dignity in individuals with multiple sclerosis, and found that having an unclear prognosis can challenge an individual’s concept of the meaning of life. As one individual with PD said to me, “I can’t believe that this disease will never be any better than it is today.”

Self-Image

How one appears to others has a profound effect on how one perceives oneself. The reactions of others become mirrors that affect self-image. The loss of muscle bulk; use of assistive devices such as canes, walkers, or wheelchairs; and involuntary movements can affect how an individual feels about their body. Incontinence or difficulty eating can affect one’s sense of dignity as well as body image. In one study, questionnaires were used to study body image among 40 participants with multiple sclerosis and 28 healthy controls. The authors found that the participants with multiple sclerosis had lower scores on measures of attractiveness and self-confidence and higher levels of concern about possible physical defects and problems concerning sexuality. The authors conclude that body image concerns should be addressed in patient interviews.⁸ A similar study found that individuals with PD have alterations of body image and self-concept, present lower personal confidence and social receptivity, and have more negative self-concept and perception of their bodies when compared with participants in a control group.⁹

Conception of Personal Identity

Several studies have examined the effect of PD on identity formation. Vann-Ward¹⁰ defined 5 stages one goes through in attempting to preserve identity after receiving a diagnosis of PD. These include making sense of symptoms, defining turning points, experiencing dilemmas, reconnecting to self, and envisioning a future. Sheldrake¹¹ found 4 themes of identity development: negotiating identity while managing PD, acceptance as a process, resisting a disabled identity, and the centrality of occupation and roles. Roger and Medved¹² found that people with PD and their caregivers identified communication as a way of “managing identity together,” balancing the desire to maintain “normalcy” with the need to address changes related to the disease. Individuals with PD employed strategies such as communicating about first moments of acceptance, daily care needs, and helping others to manage changes and retain a sense of self.¹²

Interpersonal Relationships

Many individuals speak of their fear of being a burden to their spouse or family. Marital and family conflict is not uncommon, especially when the person with neurologic illness feels their agency is being threatened. Family conflict may occur when there is disagreement about the care plan for their loved one. Role changes can also result in a sense of loss as the husband–wife dyad changes slowly and subtly into a caregiver–patient dyad.¹³ For example, individuals with PD who have undergone deep brain stimulation surgery experienced profound consequences in marriages or partnerships.^13,14 Some individuals felt that the surgery had given them a new lease on life, and rejected their spouse’s desire to spend more time with them. Other spouses were disappointed that the surgery did not substantially change their role as caregiver.¹

Grief

Spiritual considerations related to neurologic illness are best looked at through a framework of grief and loss. The work of Kenneth Moses¹⁵ provides an excellent theoretical framework for this endeavor. His theory defines grief as an automatic, unlearned, feeling process; it is natural and expected. Grief does not need to be fixed. According to Moses, people attach to core-level dreams of what they want their life to be. These dreams may include completion of higher education, employment, marriage, childrearing, and retirement. Projections for the future matter deeply, and illness, disability, and death shatter core-level dreams. No one dreams of their life ending early because of a brain tumor or amyotrophic lateral sclerosis, nor do they dream of their golden years being a time of coping with stroke or dementia. Grief is the process of letting go of those core-level dreams and “wandering in a dreamless void” until the person can attach to a new dream that is consistent with the reality they are experiencing. In many neurodegenerative conditions, this involves a delicate balance between exploring the grief that stems from a multitude of progressive losses and gently exploring how the patient and caregiver can have the best quality of life given the effects of the disease on their life.

Spiritual Challenges of Caregivers

Whereas spirituality can serve as a means of coping with the stresses of caregiving, there are also many common forms of spiritual distress experienced by caregivers.² They, too, experience the loss of their own dreams and the dreams they shared with their partner. Loss of identity occurs in caregivers who once had careers or active social lives and must now spend their days caring for someone who cannot care for themselves.

Isolation occurs as the caregiver’s circle of friends learns that the caregiver is too busy or too tired to spend time with them. Couples they once socialized with may no longer include them when the person with neurologic illness can no longer participate in the activities they once enjoyed together. Grief and loss extend beyond the loss of dreams to encompass the many small losses that occur with neurodegenerative diseases. As one caregiver said to me, “I feel like I am losing him a little each and every day”; another reflected, “I miss my husband so very much…and he is sitting right here next to me.” A helpful framework for assessing the needs of caregivers and providing appropriate interventions has been developed and reported in the literature.¹ This assessment can be conducted by providers or chaplains. Most caregivers do not expect to receive suggestions or solutions to their distress; instead, they appreciate empathetic listening. For many providers, this requires the suppression of a natural desire to identify and fix a problem. It is enough to listen in a reflective manner. Asking clarifying questions and encouraging elaboration conveys a genuine interest in the caregiver’s experience.

It can be helpful to let the caregiver know that the feelings they are having are normal and expected, and to ask the caregiver what might be helpful rather than making suggestions or presuming to know what the caregiver needs.

Providing Spiritual Care

Ideally, all members of the treatment team should be involved in the provision of spiritual care in the broadest sense. Some experts advocate that the clinician should be the first-line spiritual care provider in a delivery system that includes both generalist and specialist spiritual care (eg, chaplain). A spiritual history, which includes asking patients what matters most to them, should be taken as part of the intake process.¹⁶ Does the patient have beliefs that help them cope with adverse life experiences, including illness? If so, how do these beliefs help the patient? The spiritual history should also include asking about membership in any specific religious or spiritual community, as research demonstrates consistently that at least 50% of patients would like to discuss their religious or spiritual beliefs and concerns with their physician. Documentation of this assessment should be placed in the medical record along with a plan to address any distress noted.¹⁷

Multiple barriers exist that prevent providers from attempting to provide first-line spiritual care.^17,18 These include a lack of training in assessing and addressing spiritual needs, concerns of overstepping professional boundaries, and perceived inequalities between physician and patient. Several sites provide training in spiritual care for physicians, including The George Washington Institute for Spirituality and Health, the Harvard University Interprofessional Spiritual Care Education Curriculum, and the Union Theological Seminary spiritual generalist training program for health care clinicians. There are numerous instruments available for assessing spiritual and moral distress. One instrument, designed specifically for use by front-line providers, is the FICA (Faith or beliefs; Importance or Influence; Community; Address).¹⁹

Chaplains assume the role of spiritual care specialist in assessing and treating the spiritual needs of patients and their families by focusing on identifying and addressing specific spiritual distress and clarifying the patient’s values concerning illness, treatment, and end of life. They also deal with existential issues, such as fear of death, hopelessness, identity loss, and meaninglessness. In addition to supporting the patient directly, the chaplain may support family members, caregivers, and staff members who are coping with their own spiritual issues. The chaplain functions as a part of the neuropalliative care team, often rounding with them, gathering information, and making suggestions. Chart notes are kept by chaplains, and they regularly participate in interdisciplinary rounds with the other members of the treatment team.¹⁷

Research and Education Agenda

Despite the spiritual challenges of living with neurologic illness, intervention is possible; however, little research has been done to examine the efficacy of specific models in addressing the spiritual needs of individuals with neurologic conditions. Medical students, neurology residents, and neurologists in practice must be trained to recognize the spiritual needs of their patients, and to be comfortable and competent in providing generalist-level spiritual care.