Is There a Place for Spirituality in Neurology?

Palliative care, which is becoming more commonly used across multiple areas of medicine, including neurology, is deeply intertwined with the concept of person-centered medicine and honoring patients’ values and goals of care. The use of palliative care tools is particularly appropriate in specialties with higher proportions of chronic illnesses that are, as yet, without cures (eg, neurology). Increasing incorporation of neuropalliative care brings an emphasis on wellness, defined by the National Wellness Institute as: “a conscious, self-directed and evolving process of achieving full potential,” that has 6 domains: physical, social, emotional, intellectual, spiritual, and occupational.¹ In this review, we explore how patients and physicians alike may benefit from increased comfort with the wellness domain of spirituality as it pertains to providing medical care, particularly for people with neurologic conditions.

Spirituality has been defined and understood in various ways throughout history. Because there are different understandings of what spirituality is, and it is considered an integral aspect of wellness and palliative care, it is important to make clear what we do and don’t mean by spirituality in this review. Spirituality has been defined as an essential, dynamic, and intrinsic aspect of humanity in which a person seeks meaning, purpose, and transcendence. For many, this may include a connection to something larger than themselves (eg, family, others, community, society, nature, and what they consider sacred),² and for others, meaningfulness is something the individual alone does or does not create for themself.

There are many other definitions and nuances for what is discussed as spirituality. For this article, we emphasize that individual spirituality may or may not include higher powers or gods (eg, God, Allah, or Shiva) or any form of organized religion. Religion can be defined as established traditions that come from a group of people who have similar beliefs and practices concerning what they define as sacred.^3,4 Spirituality may be expressed and experienced through religion and can also be expressed through individual or community beliefs, values, traditions, and practices that can overlap with, but are not the same as, religion. Spirituality is often thought of as being something more personally defined and less constricted by the rules and responsibilities of organized religion.³

Conversations About Spirituality

It is important to differentiate between spirituality and religion because many people who do not consider themselves religious still have something in their lives that gives them meaning and purpose and this often connects them to something larger than themselves. Such connection ranges from a faith community to family, music and art, being in nature, and volunteering or having a career to help others. The individual patient’s specific form of spirituality is less important than that their values, including their spiritual beliefs and practices, are acknowledged and respected by all members of the care team, even when members of the care team hold very different beliefs.⁵

Spirituality has importance in medicine because when people are at their most vulnerable, they will often reach out for answers to life’s difficult questions. Thus, it may be damaging to patient-provider relationships and care to leave spirituality out of conversations about peoples’ health care, especially for chronic diseases and end-of-life decisions. With physical decline and death in view, many with advanced illness seek hope, meaning, and comfort in their lives and in their connections to the transcendent.⁶ During such life-changing events, people are most likely to ask many of the difficult questions of life (eg, Why do we suffer?, Why do people die?, Why is this happening to me?, Who/what or are there deities?, What is the value of my life?, and Where can I find hope?).² For any person there may be different or no answers to these questions, and their spirituality or source of meaingfulness may still help guide them through the difficult period they are experiencing. Because these questions can be extremely vivid and pressing for people at these moments, openly discussing them can put a person at ease.² The American Medical Association’s Code of Ethics states that advanced care planning is a way to help people make the best possible decisions for themselves, so they can have the best possible care at the end of their lives. It advises that health care team members encourage patients to share their values, goals, and preferences with the team to help ensure that those beliefs inform both present care decisions and any that may be made in the future when they might not be able to speak for themselves.⁷ Having such conversations without consideration of the individual’s spirituality—oftentimes an aspect of life that is most important to them—deprives them of the fully patient-centered care they deserve. A patient’s values and beliefs should guide their goals and preferences as they plan for their future with their health care teams’ support (Box 1, Table).

Conversations about spirituality also need to consider the social determinants of health (eg, racism, sexism, homophobia, disability, socioeconomic status, and access to resources) that directly and indirectly impact the health care that a patient receives. As has been stated, spirituality can be understood differently among varying individuals and this is also true for varying cultures, which means conversations about spirituality need also to be culturally sensitive. This is emphasized by studies that show that race is a determinant for who receives palliative care with Black patients less likely to receive or be offered palliative care compared with white patients.⁸

Spirituality In Clinical Care

The point of integrating acceptance of spirituality into care is not to have neurologists or other physicians become (or replace the roles of) hospital chaplains and clergy or other members of the team. Nor is the point to add to the many responsibilities and tasks physicians already must fit into clinical visits that are often too short. Rather, if health care professionals add spirituality to the things they consider about patients when thinking about patients’ overall well-being (Box 2), this can fit into and potentially improve care quite naturally. A large proportion of patients want to discuss spiritual needs with their physicians, meaning they want their spirituality to play a role in the medical care they receive.⁹ Patients who received such spiritual support from the medical team and pastoral care visits were shown to have higher quality-of-life scores and received more hospice care as they approached death compared with those who did not receive such care.⁶ Patients want to have these conversations with their physicians because these questions are important to them, and their physicians are playing a significant role in their lives at these moments.

Healing and medicine are more than providing the right medication or therapy. Healing also means returning the patient to a state in which they can pursue what is meaningful to them, which requires understanding how they find meaning in their life. For example, when a person experiences a stroke, they may have a need to know that they are worthy and there is a purpose to their life.¹⁰ This can be especially crucial for those who have difficulty communicating, (eg, with expressive and/or receptive aphasia). Even though it may be a challenge for them to express and explain what gives them purpose and value, doing so can be vital for people’s hope for the future.¹⁰

Neurologists and other health care professionals are already tasked with difficult, yet important, life-changing discussions with patients and their families and care partners. Studies in palliative care and other medical specialties show that being able to incorporate spiritual concerns into these conversations can improve outcomes of care, especially in quality of life.^11-16 In neurology, such correlations have been found in stroke recovery^10,17-21 and managing amyotrophic lateral sclerosis (ALS),^22-24 and evidence is emerging for Parkinson disease,^25,26 and Alzheimer disease (AD),^27-29 among other neurologic conditions.³⁰ We discuss spirituality in AD next as a concrete example of how spirituality can impact neurologic care.

Spirituality and Alzheimer Dementia

A qualitative study of 28 individuals diagnosed with early AD provides an example of how spirituality can play an important role in neurologic care.²⁷ Comments from participants in the study support that for someone dealing with AD, spiritual values and beliefs can help them cope with their illness by giving them effective standards for living and relating, models for responding to human suffering, comfort pertaining to their life circumstances, hope that they may be cured or have a good end to their life, strength to get all they desire out of life, and, for some, expectations for an afterlife where they will be fully restored. Because the feeling of being abandoned by faith communities may lead to worse outcomes, it is essential that health care teams, families, and faith communities understand people with AD are able to engage in and benefit from discussions of spirituality and faith. These issues may be core aspects of their humanity, which are pillars of their identity, outlook on the world, and sources of meaning as they go through this difficult part of their lives.

In addition, people with AD may need assurance that the reason they have this disease is not because they are being punished by a higher power or god for shortcomings in their lives.²⁷ These thoughts can easily become invasive for those who believe in a higher power or god, so it can be essential for care partners and loved ones to encourage and support continued involvement in activities that give a person purpose and support positive coping. Considering that AD often decreases people’s ability to self-initiate, it can be helpful if those providing care initiate conversations around spirituality and faith.²⁷ This can come from family, friends, or other caregivers, but also from health care professionals working to provide the best possible care for their patients.

Teams Are Necessary for Addressing Spirituality

A study showed patients are more willing to receive spiritual care from chaplains than from nurses, which may not be surprising given their different roles but is notable as a reason to include nurses in spiritual care training considering their greater numbers and their higher level of contact with patients.³¹ Obviously, not everyone in a medical setting can have all the skills or all the time do everything, and having a basic understanding and comfort with the work chaplains do can go a long way. Just as neurologists benefit from having basic palliative care skills because there are not enough palliative care specialists, so too there are not enough chaplains. All medical care professionals can learn and provide the basics of spiritual care, while also knowing when to call on chaplains who are specialists on these issues (Box 3). Providing the best possible care for patients is a team effort; the more medical professionals are comfortable with the language of spiritual care, the more efficient the team can become in incorporating spirituality into the care they provide. Training can also be beneficial to those who consider themselves to be spiritual and understand the importance of it. Care practitioners who self-identify as having a strong spiritual practice have noted that they find this helpful when caring for patients but indicated barriers of time and training to implement such care. Improved training may increase confidence to efficiently use spirituality in care.³²

Both nurses and physicians play an instrumental role in the well-being of their patients and can facilitate conversations around spirituality that will enable them to be fully present for their patients. Through patient-centered care, nurses can inspire their patients and enhance their spirituality to help them cope with their AD. Nurses often provide the initial support to patients after a life event has taken place, acting as the first line of care to support patients in those crucial moments. When a person’s life seems to be in turmoil, they may need to have someone to help them accept, reorder, and transcend what they are dealing with. It is often their spirituality that helps them continue on, as opposed to becoming stuck. Medical professionals can support anything that gives their patients the hope and courage to push on with their life.³³

Whether a health care professional is religious themselves or not or even believes in the concept of spirituality, their patients may still need support for having their own beliefs in order for them to cope with their condition and find healing and peace. All members of the health care team can provide compassionate care that centers on patients’ beliefs. Some clinicians find that including open conversations about spirituality enhances that compassion not only for the patient but also for themselves (Box 1 and Table). An openness to talking about what gives life meaning with patients can enhance the patient-clinician relationship, support a connectedness between physicians and patients, and even help clinicians access what is meaningful to them about caring for their patients.

Benefits to Clinicians

In addition to the impact spiritual care has on the well-being of patients, spirituality can also positively affect health care professionals. Each person’s connection to their own spirituality (at whatever level that is) allows reflection on personal and professional meaning. Why did we become healers and how is that calling reflected in what we experience and do? Even clinicians who do not believe there is a transcendent answer to this often need to find meaning in their work, which can help them to process and accept the loss of life inherent to medicine. Just like patients, doctors also struggle with the difficult questions that often come up in medical settings (eg, Why must my patients be in such pain,” “What more can I be doing to preserve my patients’ dignity?”, “Why do I feel the way I do when a patient dies?”, or “How can I care for myself when I’m surrounded by others’ suffering and death?”) These questions are at the heart of what we mean by spirituality, whether it includes religious practices or not.³⁴ Encouraging medical professionals to ask these questions may help be able to care better for their patients. Connecting with their own spirituality may positively impact the compassion and presence they provide.³⁵

For some medical professionals, the idea of spirituality does not come naturally, and it is still the case that difficult questions that may be addressed through spirituality are discouraged in training and practice in many settings. Clinicians may automatically think spirituality is related to religion or connected to the supernatural and not within the realm of science. Education about and acceptance of the spiritual needs people may have is needed to teach what spirituality is and the impact it can have on care. Discussions about spirituality should happen as early as possible because those that are more attuned to their own spirituality will likely be more comfortable and able to address their patient’s spirituality. A study showed that physicians who regularly addressed spirituality with their patients, did so both because of the priority that spirituality is in their lives and because of the scientific evidence associating spirituality with health.³⁶

Spirituality in Medical Education

When medical students find meaning and purpose (ie, spirituality) it may improve their mental wellbeing and make them more attuned to how they care for patients.³⁷ In general, attunement to what gives a person meaning and purpose can give them direction and keep them focused on what is important to them. This is also the case for medical professionals, so helping them to tap into their own spirituality is vital. The more time given to this work the better, but much change can take place in short training in medical school or while on the job. A 150-minute training for medical students increased interest in spiritual care and increased comfort in sharing their own beliefs.³⁸ In another 10-hour training program, which included presentations and group work, the spiritual care abilities of nurses were significantly improved.³⁹ These programs were not that time-consuming, and for medical students, was shown help them cope with the stress of medical school, make clinical decisions, resolve inexplicable events, and practice patient-centered care.⁴⁰ For nurses, spiritual care training has been seen to increase confidence in their ability to provide spiritual care and to provide a more holistic perspective on the care they are providing.⁴¹

Is Perspective Change Needed?

For those who are still unsure about the impact of spirituality in the medical field, a perspective change might be needed. Although health care professionals might sometimes think it is their duty to strive only for unfailingly positive results, spirituality can help clinicians reframe their role as being part of the healing and coping process, offering them relationships, compassion, and caring while using their expertise. As we have especially seen from the COVID-19 pandemic, this work can be physically and emotionally draining. A certain amount of humility is needed because even in the best of circumstances, not all patients can be cured. Shifting our focus more toward the healing process and less on the results can ease the stress and discomfort of the day-to-day work. Spirituality can help medical professionals foster acceptance and may help clinicians better sustain themselves.³⁴