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Understanding Existential Distress

“Existential distress”, as defined in the Journal of Pain and Symptom Management, encompasses feelings of helplessness, loneliness, anxiety, and a loss of meaning and purpose. It prompts individuals to grapple with profound questions like, “Why am I here?”, “What is the purpose of my life?”, “Why is this happening to me?”, and “Why am I a burden to others?”. When left unaddressed, existential distress can negatively affect health outcomes and quality of life, especially among older adults.

Let’s explore common sources of existential distress in older adults – loss and grief, loneliness and social isolation, and serious illness.

Sources and Impact of Existential Distress in Older Adults

Loss and Grief

Though nearly all of us face the loss of a loved one at some point in our lives, the experience of loss becomes more common as we age. While overcoming loss does not always disrupt one’s life indefinitely, loss and grief can become debilitating.

Prolonged Grief Disorder, a persistent and intense form of grief, affects nearly 1 in 4 grievers aged 65 or older. Symptoms include identity disruption, disbelief, emotional pain, loneliness, and a sense of meaninglessness. If left unaddressed, these symptoms can have a significant impact on physical and mental health. A study published in the Journal of Affective Disorders links Prolonged Grief Disorder to weight loss, increased illness, depression, hospitalization, emergency visits, and a higher risk of mortality.

These negative health outcomes of grief translate into increased total costs of care. It’s been estimated that during the first year following the death of a spouse, Medicare costs for the surviving spouse increase by over $4,300. Cost increases are even higher in the second year following the death of a spouse. For example, if the deceased spouse was a caregiver of their surviving spouse, the Medicare costs of the grieving spouse increase by nearly $7,500 in the second year of grief.

Loneliness and Social Isolation

Loneliness and social isolation, described as an “epidemic” and “public health crisis” by the U.S. Surgeon General, are experienced by roughly half of U.S. adults. The highest prevalence age group is among adults over 65. A nationally-representative longitudinal study found that 43% of the older adults in the study reported feeling lonely. In another report from the National Health and Aging Trends Study, researchers found that 24% of community-dwelling adults age 65 and older were socially isolated.

The impacts of loneliness and social isolation are profound. Studies show adverse health outcomes include a decline in activities of daily living, a 50% increased risk of dementia, a 30% increased risk of coronary artery disease, and a 26% higher risk of all-cause mortality.

The overall and individual level costs of loneliness and social isolation are great. The Surgeon General reports that social isolation among older adults alone accounts for an estimated $6.7 billion in excess Medicare spending annually. Other analyses of Medicare data show an increased annual cost of over $1,700 per socially isolated older adult.

Serious Illness

As seniors reach advanced age, a growing number face serious illnesses. Individuals facing cancers and other serious illnesses experience the most acute form of struggle with existential distress. A study in the journal Cancer reveals that cancer patients with low spiritual support experience more ICU care, higher ICU mortality, and lower rates of hospice enrollment than cancer patients with high spiritual support. Low spiritual support was also associated with 1.9x the cost of care incurred during the patients’ last week of life.

The study also highlighted health inequities faced by racial and ethnic minorities facing a serious illness. The higher rates of ICU admissions and ICU mortality were significantly higher for racial/ethnic minority patients than the general study population. Ethnic/racial minorities also received less hospice care at the end of life. All of these factors contributed to greater costs in the last week of life. Specifically, costs for minority patients with unmet spiritual needs were nearly 2.5x the excess end of life costs of the general study population with adequate spiritual support, showcasing the need for more equitable spiritual care integration to improve end-of-life outcomes.

Tools to Address Existential Distress in Older Adults

While there are several tools that are useful in addressing the symptoms and sources of existential distress – psychotherapy, medication, and socialization, among others – the role of spiritual care interventions are an often overlooked approach.

As published in “Psychogeriatrics”, researchers John Peteet, Faten Al Zaben, and Harold Koenig argue that, “Adults over age 65 years tend to be religious and in fact are the most religious of any age group in the United States. Additionally, religious and spiritual beliefs and practices are often used to cope with loss and change in later life, particularly declining physical health and increasing dependency, which medical treatments may be less effective in reversing.” They go on to say that, “These changes present existential challenges in relation to identity, hope, meaning, purpose in life, and autonomy or connectedness – issues that many view as spiritual in nature.” They conclude that spiritual and religious interventions integrated into the care of older adults is an important element of improving health outcomes and the quality of life of older adults.

Integrating Spiritual Care into Older Adult Care

Given the critical role of spirituality in mitigating existential distress, how might healthcare providers better integrate spiritual care into their care models?

First, mitigate the stigma associated with spiritual care. Chaplains should not be exclusively linked to end-of-life care, and organizations have the power to reframe this misconception. By staffing chaplains not only in hospice settings but also in primary care, post-acute care, and long term care settings, the broader role of spiritual care in improving the quality of life for older adults can be recognized. By incorporating spiritual care into broader behavioral health programs, individuals and organizations will increasingly associate spiritual care with longitudinal care, not episodic end-of-life or trauma care.

Second, integrate spiritual assessments into standard psychosocial screenings. This involves conducting a spiritual history as part of initial and ongoing behavioral health and social needs assessments. Following assessment it’s important that individualized care plans include interventions that respond to an individual’s emotional and spiritual needs such as spiritual counseling.

Third, provide culturally appropriate spiritual care. As the older adult population becomes more diverse, providers must offer spiritual care in a manner that reflects a vast diversity of religious and cultural backgrounds. Acknowledging and respecting the varied spiritual beliefs and religious affiliations of individuals, including those who follow minority faith traditions, is vital. Spiritual care departments must reflect the religious and cultural diversity of the individuals they serve to address emotional, existential, and spiritual needs effectively.

As the aging population expands, it is critical to take a holistic approach to older adult care that recognizes the profound impact of existential distress. Incorporating spiritual care into interventions for those experiencing serious illness, grief, and social isolation is one important strategy for addressing existential distress. With SpirituWell and its provider partners, we can foster care delivery models that prioritize the spiritual well-being of older adults, ensuring they lead lives with higher quality of life amid the existential challenges that often come with aging.

Andrew Savitz
Chief Executive Officer