The most overlooked element in the Plan of Care has to do with the patient’s family. Up until now, there has been no means to document electronically the spiritual concerns of the family members as part of the Plan of Care. However, with that said, it must be remembered that the family is experiencing stress and emotional exhaustion due to their loved one’s illness. Therefore, it is absolutely fundamental that we include these loving caregivers in the Plan of Care.
A study led by the University of Kentucky researcher Elaine Wittenberg-Lyles found that hospice family caregivers are "second order patients" themselves and require their own unique care needs (UKNow, November 30, 2011). “It doesn’t matter how well educated you are," said Wittenberg-Lyles. "When someone you love is dying and you are in a position to care for them at home, your home turns into a hospital room and key decisions need to be made hourly. Clinicians should assume that anyone going through the stress and chaos of caring for a terminally ill family member has low health literacy and high needs for education and support” (UKNow, November 30, 2011).
In another study, Susan C. McMillan Ph.D., A.R.N.P., F.A.A.N., presents a compelling table of spiritual care concerns in her article in the Journal Of Palliative Medicine, Volume 8, Supplement 1, 2005:
TABLE 1. CAREGIVER NEEDS REVEALED BY DESCRIPTIVE STUDIES IN CHRONOLOGICAL ORDER
Reference Results: caregiver needs (Underscore mine)
Given et al., 1993 Cancer caregiver depression was associated with patient depression.
McMillan and Mahon, 1994 Cancer caregiver quality of life was lower among hospice caregivers compared to non-caregivers and lower also for caregivers of patients with more advanced disease and lower functional status.
Kurtz et al., 1994 Among cancer caregivers, there is a weak but significant relationship between patient symptoms and caregiver depression, and between patient depression and caregiver health.
Given et al., 1999 Cancer caregiver depression was associated with new or increasing demands for assistance.
Weitzner et al., 1999 Hospice caregiver quality of life correlated with overall caregiver mental health.
Emanuel et al., 2000 Needs of terminally ill patients included transportation, nursing care, homemaking, personal care. Caregivers of patients with substantial care needs were more likely to report higher economic burden.
Nijboer et al., 2000 Cancer caregivers’ experiences are both positive and negative. More negative experiences are reported by women, younger caregivers, and caregivers with higher socioeconomic status.
Robinson-Whelan et al., 2001 Dementia caregivers experienced depression and loneliness for up to 3 years after the death, with levels similar to current caregivers.
Haley et al., 2001 Hospice caregivers of patients with lung cancer reported same levels of depression as hospice caregivers of dementia patients and both reported more depressive symptoms than non-caregivers.
Haley et al., 2003 Among hospice caregivers, female gender, caregiver health problems, and negative social interactions predicted poorer caregiver well-being.
Schulz et al., 2004 Dementia caregivers showed no improvement in depression or anxiety after institutionalizing the demented family member.
Given et al., 2004 Cancer caregivers of patients near the end of life reported depressive symptoms which were highest in the 45-54 years age group, in caregivers of patients who were nearer to death, in adult children, and in those who were employed. Caregivers of patients with multiple symptoms reported the greatest disruption in their schedules.
Depression, quality of life, loneliness, anxiety, disruption to life’s schedule are indicative of the need for spiritual care. The characterization that anxiety and depression show no improvement and that depression and loneliness last for up to 3 years after the death of the patient reveal the dire nature of the issues faced by family caregivers. While I am not suggesting that a Chaplain’s work will provide a quick fix for these pernicious maladies of the spirit, I am stating that a Chaplain’s work will have a very positive impact upon the family caregivers.
Whether hospice care is provided in the home of the caregiver, friend or loved one; a retirement home; an assisted living facility; a nursing home; a hospital or an in-patient hospice facility for acute symptom management or wherever else a patient considers to be “home”, the hospice Chaplain can provide assistance that will benefit the family caregiver. Listening, empathetic presence, appropriate touch, and pastoral counsel that is short on platitudes and long on compassion are qualities of a pastoral encounter that will give the family caregiver new energy to carry on.