“Before I visit a patient, I say a prayer at the door asking for God to guide me.”
“Since I’m a Christian, is it okay that I pray in the name of Jesus [with my patients]?”
“I always ask if [the patients] would like me to pray with them.”
– Hospice Home Health Aides QI Survey
One morning, a home health aide named Janet sat down next to me in our hospice office in California and said, “Mrs. Smith is having a very hard time. She has a rosary that she keeps in bed with her. She cries in the morning when she says her prayers.” Another aide, Carrie, said, “You know, some of our co-workers don’t believe.” In further conversations, we came to understand that Carrie’s statement reflected not so much a judgment of our coworkers, but instead that her religious belief was her primary motivation for choosing hospice work. She was puzzled by the idea that caring for the dying wouldn’t be connected fundamentally to a spiritual call and a faith mandate.
As we began hearing more statements like this, we came to see that the home health aides at this large, non-profit hospice were offering a type of subtle, steady ministry to our patients and families. We hoped to better understand their motivations, identify which spiritual care practices they were using with patients, and clarify how they were addressing matters such as distress and prayer. It became clear that this was a potential resource to improve patient and family care, as well as an area for overall quality improvement and professional development for the home health aides.
The hospice home health aide (HHA) provides basic personal care for the patient in his or her home or facility. She or he is often the team member who spends the most time with the patient and family, because she provides basic care in the home or facility and helps the patient and family with the activities of daily living (ADLs). The HHA is part of the hospice interdisciplinary team and reports directly to the RN case manager, following the patient’s plan of care. The HHA makes regular visits to the patient, three to seven times a week, and provides help as needed for bathing, dressing, positioning/turning, feeding, personal care and companionship. She often provides care for actively dying patients, as well as post-mortem care for patients in the presence of grieving families.
HHAs perform highly physical, hands-on care for patients at their most vulnerable. Most of their patients are bed-bound and unable to care for themselves. The intimacy of the type of care the HHAs provide, as well as the frequency of care, connect the aide to the patient in a way unique to the hospice team. It is not “glamorous” work, and the aide is often on the borders of the health care team. They often do not attend weekly interdisciplinary meetings, as they are scheduled to see patients in the early mornings and carry a particularly full caseload.
We designed a 25-question paper survey to be distributed to all HHAs employed at seven regional hospice sites. The survey addressed questions of personal faith, attitudes towards prayer, discrete practices relevant to work (such as use of referrals), and educational needs and desires. We steered clear of questions related to patients, clinical tasks, or matters that might be related to adherence to company policies. HHAs were asked to return completed surveys to their sites’ chaplains, who passed them onto us for analysis and reporting. The overall response rate was acceptable (53 percent) and included nearly all of the aides at three of the sites – however, one site did not respond at all due to the recent death of a hospice team member. Our final sample was almost entirely female, Christian (roughly half Catholic), aged between 46 and 55, and educated at the associate’s degree level or below.
We cleared this study with our organization’s quality, compliance and education officers (QCEs). Because the study was deemed a quality improvement survey, we did not undergo an IRB review. As such, we advise the reader to understand the results in context, and not as generalizable research. Our goals were to understand the spiritual beliefs and practices of HHAs, identify particular areas of growth and improvement for our health care team, and provide the groundwork for chaplains to offer specialized in-services for home health aides. We presented our survey results as a poster at the 2011 Association of Professional Chaplains’ conference.
In our study, home health aides presented as having strong spiritual beliefs and prayer practices that fundamentally shaped their perceptions of life and work. Most respondents saw their work as a blessing and said that faith guided decisions in their life. Nearly half attended religious services more than once a week, and all but two reported praying with patients during the course of their activities.
For most HHAs, education on the spiritual end-of-life needs was limited to personal study and training in their faith community. Nearly a third of respondents noted no employer-sponsored education, and the few that did have such education were split between online education and in-services by chaplains. We believe that this led to the inconsistent practices we observed regarding praying with patients. For example, over half of the HHAs in our sample reported that they didn’t generally know the religion of their patients – yet nearly half of those who prayed for their patients reported sometimes or often praying with them present. In addition, several HHAs reported directly to us that when they prayed for patients who welcomed basic spiritual support, they prayed in the language of their own religion, even when they did not share the faith of their patient.
Our survey indicated that HHAs rarely discussed the patients’ spiritual needs with the hospice team, despite the reality that the frequency and type of patient interactions gave them a unique access to patients’ concerns. More than half of the respondents reported never or rarely referring to the RN case manager.
The HHAs demonstrated a high level of awareness of the nuances of patients’ end-of-life journeys and displayed sensitivity to the patients’ emotional states. Nearly all of the respondents reported a strong desire to learn more about chaplaincy topics, such as grief and loss, how and when to pray with patients, working with non-religious patients and staff, and caregiver stress.
How do I work with the “client who does not want the caregiver to ask for or receive any prayer or talk of religion”?
“I think that HHAs will benefit with a chaplain inservice and moral support.”
“I believe the spirit is the core of the human.”
It is “nice to be acknowledged” and to have “permission to talk about my faith.”
– Hospice Home Health Aides QI Survey
Quality Improvement Implications
As a result of our survey, we identified an opportunity to collaborate with HHAs to improve patient and family care, address their skills and limitations in caring for patients in the multi-faith context, and equip them with clearer guidelines and resources.
We designed a one and a half hour in-service for each regional group of HHAs, with a 10-slide power point presentation and open discussion/Q&A with the chaplain of each given site. The in-service addressed basic spiritual and psychosocial care skills, such as asking open-ended questions, following a patient’s lead, active listening, and addressing emotions. We explored caregiver stress and professional boundaries, drawing on the spirituality of HHAs as a resource. We also shared material on spiritual assessments done by chaplains, as well as spiritual screens that could be done by interdisciplinary team members.
The in-service included role-playing with various end-of-life scenarios, including caring for patients of different faiths, presenting questions such as, “Why is this happening to me?” “Am I going to Heaven?” and “Do you think God is punishing me?” We addressed how to appropriately honor the patient’s beliefs by taking cues from the patient’s environment such as a rosary on the nightstand or a Torah at their bedside table. We encouraged the use of sacred and secular music as a means of peace and comfort, particularly for patients with dementia. The HHAs were receptive and enthusiastic, sharing stories of caring for dying patients with sensitivity and compassion.
The issue of prayer was a primary focus, as many of the HHAs routinely prayed for patients as they finished their work. We clarified the appropriate usage of prayer, and what cues to follow. For many of the HHAs, the use of multi-faith prayer language was a new practice. They raised questions about how and when to pray with patients of the same or different faith. For example, one Aide was using the name of Jesus in prayer with all of her patients, including Jewish patients, so we discussed how to use broader names for God and draw on shared religious texts such as the Psalms, to honor the patients’ traditions as well as her own.
During these sessions, many HHAs cited religious texts or quotes from hymns as sources of personal comfort and inspiration, and we affirmed the importance of private spiritual practice as a means of self-care and grieving the deaths of patients. Other HHAs noted that privately praying for their patients after they died helped them to “let go” and move on to the next patient.
We also clarified how and when to make referrals to chaplaincy, either via the RN case manager or to the staff chaplain directly. We received feedback that this was the “best in-service we have ever had.” One HHA stated, “This is why I do this work! It’s a gift. You understand, because you are a woman of faith.” This study was well-received, as it honored the under-appreciated work of the home health aides, provided education and information, and improved spiritual sensitivity and quality of care for the patients and families of our Hospice program.
This article was originally published on the PlainViews website which offers knowledge and skills for effecitve chaplaincy & palliative care. About the authors:
Sarah Byrne-Martelli, BCC, currently serves as staff chaplain with Beacon Hospice, an Amedisys company, in Beverly, MA. She is endorsed and commissioned by the Orthodox Church in America. Sarah received her Master of Divinity from Harvard Divinity School in 2002. She also works as a voice teacher at the Winthrop School of Performing Arts and is a member of the Boston Byzantine Choir.
Peter F. Martelli, PhD, MSPH studies the organizational factors that affect health care delivery. He earned a PhD in Health Services and Policy Analysis at the University of California – Berkeley, and is currently on the faculty at the Boston University School of Public Health.