Staff Perspectives on the Provision of End-of-Life Care in a Community Residence for Older Adults with Developmental Disabilities

Abstract

Objective:

The purpose of the study was to describe the perceptions of community residence (CR) staff who have cared for older adults with developmental disabilities (ADDs) that are at the end of life.

Design:

This exploratory, descriptive study utilized qualitative methods that involved semistructured interviews with CR staff members.

Setting:

The setting was a CR that was also an intermediate care facility (ICF) that provided 24-hour residential treatment for medical and/or behavioral needs. At least one registered nurse was present at all times. A CR with at least one resident who was over the age of 40 and had a diagnosis of a life-limiting illness was chosen.

Participants:

Participants included three frontline workers, four managers, and one registered nurse.

Methods:

In-person interviews included open-ended questions about end-of-life care for older ADDs. Demographics such as age, length of time working with ADDs, and education were analyzed using descriptive statistics. Descriptive statistics were used to analyze demographics such as age, and length of time working with ADDs. Interviews were digitally recorded, transcribed, and analyzed using grounded theory techniques.

Results:

Four themes illuminated unique elements of the provision of end-of-life care in a CR: (1) influence of relationships, (2) expression of individuality, (3) contribution of hospice, (4) grief and bereavement, and (5) challenges to end-of-life care.

Conclusion:

The results provided insight into the unique needs of older ADDs at the end of life and how this influences their care. Emphasis was also placed on the importance of specialized care that involved collaborations with hospice for older ADDs who remain in a CR at the end of life.

Introduction

Adults with developmental disabilities (ADD) are diagnosed with cognitive and or physical limitations that occurred before age 18.¹ Examples of ADD include mental retardation, Down Syndrome, autism, and cerebral palsy.² Adults with ADD are living longer because of medical advances and improved care.^3,4 Despite the increase in life expectancy, ADDs age more rapidly and are vulnerable to earlier diagnoses of life-limiting illnesses such as cancer, cardiovascular diseases, and Alzheimer's Disease.^5–11 The end of life experience for ADDs has unique and distinct challenges.^12–16

Community residences (CRs) have increasingly been addressing the care of ADDs who remain in the facility.¹⁷ Some of the challenges experienced in providing end-of-life care in a CR include meeting the unique needs of ADDs and those who provide care.¹⁸ Discussing advance care directives, funeral planning, and the location of death (e.g., CR versus hospital) can be anxiety provoking for staff members who have limited experience in providing care to those with chronic illness who are at life's end.¹⁹ Staff members are vulnerable to experiencing distress and potential burnout without training and emotional support.²⁰

Recently, hospice services have begun to provide symptom management and emotional support for terminally ill residents of CRs.^21–23 Identification of staff and resident needs at the end of life is essential to ensure high-quality care for dying residents.^24,25 Further identification of the unique needs of this population and specific aspects of care are needed.²⁶ The objective of this study was to describe how end-of-life care is provided in a CR.

Methods

Design and setting

Purposeful sampling was used to identify a CR that had multiple residents over the age of 40 and had a diagnosis of a life-limiting illness. The study involved in-depth interviews with CR staff who agreed to participate. The setting was a CR with intermediate care facility (ICF) designation that provided 24-hour residential treatment for high-acuity medical and behavioral needs that severely limited independence. The majority of residents were wheelchair bound, had feeding tubes, were deaf and/or blind, and had limited ability to verbally communicate. There were 14 residents in this home, four to six staff members on each shift, and at least one registered nurse (RN) on duty at all times. This CR had utilized hospice services for 13 months prior to the study.

Procedures

Face-to-face semistructured interviews were conducted with frontline workers, RNs, and managers. Frontline workers were individuals who provided direct care. All interviews were conducted by the first author, digitally recorded, and transcribed by a professional transcriptionist.

Analysis

Interviews were transcribed and entered into Atlas ti (Scientific Software, Berlin, Germany) for data management and coding. Analysis involved open coding and memos. Open coding led to the development of terms that led to categories (e.g., providing end-of-life care, symptoms, and emotional reactions). Memos were used to provide preliminary reactions and insights into relationships between categories (e.g., earlier transitions to end-of-life care were beneficial). Data matrices were used to create a visual display which facilitated comparison of participants' views by discipline.

Rigor of the qualitative data analysis was maintained by the use of co-coding and an audit trail. Co-coding or the use of more than one analyst to examine the data was conducted by the project investigator (PI) and an independent consultant. An audit trail documented study decisions.

Results

Participants

The sample included two males and six females, six (75%) who were Caucasian and two (25%) who were African American. The mean age of the participants was M=45 (range 24–64). Participants' staff roles were resident managers (N=4 [44%]), frontline workers (N=3 [33%]), and one (11%) RN. Participants had worked at the CR for an average of five years (range 1–17 years of employment). Participants averaged 18 years (range 3–40) of experience working with ADDs.

Results

Five themes emerged that illustrate how CR staff members provided care for residents nearing the end of life: (1) influence of relationships, (2) expression of individuality, (3) contribution of hospice, (4) bereavement and grief response, and (5) challenges to providing care.

Influence of relationships

An emotional connection with the individual was central and demonstrated through eye contact and touch. Maintaining hygiene was not viewed as a duty but as an opportunity to connect with a dying resident. The words of this frontline worker illustrate:

A lot of it was just being there with him. Making eye contact with him, talking to him, letting him know that you're there. Just reaching up and grabbing his hand. He would tighten his grip just to let you know that he knew. I would go in and give a bath or rub his back or just sit there. It takes time. You can't just go in there and say, “Okay I am going to give you a bath and do this and this,” because you are not going to get a response. But when it is end of life you have to take your time because they are not going anywhere except up to heaven.

Professional boundaries such as keeping an emotional distance limited the ability to fully provide end-of-life care. Participants perceived that a deeper level of intimacy assisted them in providing comfort and enhanced their ability to anticipate dying residents' needs.

Expression of individuality

Meeting residents' needs and desires brought comfort. Expressing individual preferences such as when to eat, shower, and watch TV provided a sense of control. A frontline worker illustrated:

He liked to watch soap operas and he had his own routine going on in there. We really had to keep things as normal as possible. There was a lot of concentration on keeping the routine that he liked and we had a board we would write his schedule for the day. It helped him to feel like he still had control.

The presence of a relationship was vital when ADDs had limited ability to communicate. Without that bond and consistent contact, communication could be misinterpreted.

Contribution of hospice

Participants recognized the need for additional support when residents were dying; thus a partnership was developed with hospice. The following quote suggests that staff education was one of the benefits of hospice involvement. A CR manager explained the following:

Hospice is going to be here to help us. Say we have an individual that ended up in the hospital with pneumonia. They would help us with the transition. They would help figure out how to get that individual better and get him back here (CR) and what things to put in place.

Staff with no prior experience caring for a dying individual expressed fear of the dying process. Caring for a dying person was associated with fear, due to facing their own mortality. Participants viewed hospice as a source of support with emotional responses to end-of-life care.

Bereavement and the grief response

Staff members described residents' grief. The shared perception of “family” was used to explain the relationship between staff members and residents. Because residents have relationships with each other in which they define themselves as family, not just roommate, when a resident dies there is grief throughout the CR. A nurse illustrated:

People do not realize how the residents react to death. We've had a lot of deaths and they're very good with it. They know it's different in the house. And they love each other. It's like a family. The only thing residents have on a regular basis is each other. Staff change all the time.

Challenges to providing end-of-life care for people with ID

Accurate assessments can be difficult to obtain when multiple diagnoses are involved and a resident has limited communication ability. When a resident could not indicate where he or she was feeling pain, staff members relied on their relationship with the resident to determine if behavior change signaled a need for a medical assessment. A CR manager described:

It's a very stressful field, and with the Downs population, they have a lot of co-existing diagnosis. You have to know them very intimately…. If she's not feeling well, she can't say, “Well I have a headache,” so you have to know the signs to look for. And it gets stressful trying to figure it out.

Discussion

Staff perspectives contributed to the growing understanding of situation-specific end-of-life needs. Challenges in providing end-of-life care to ADDs included decisions about the transition in the focus of care and how to monitor symptoms. Previous research has reported that ADDs with life-limiting illnesses have longer and more unpredictable disease trajectories, creating a challenge to know when end-of-life care is needed.^28,29 The development and consistent utilization of assessment tools could assist in identification of when an individual is in need of transitioning to end-of-life care.³⁰

Hospice involvement requires a need for increased attention to how the two organizations can collaborate.^31,32 Training needs are bidirectional; hospice professionals who work in CRs need information about ADDs, and CR staff can benefit from training about the dying process. Future research is needed about developing relationships between providers of services to ADDs and hospice organizations.

Acknowledgments

This study was supported by a grant from the John A. Hartford Doctoral Fellows Program.

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