Hospice Care at the End of Life

Adults with ID may be placed in an in-patient hospice or receive in-home hospice care in a family or a community agency residence. While there is a need for these supports, adults with ID often underutilise palliative care services (Bailey, Doody, & Lyons, 2016). Palliative care providers generally have limited or no experience working with adults with ID (Ryan et al., 2011). When an adult with ID receives in-home hospice, the family may incorrectly assume that hospice caregivers provide the majority of the care (Farmer, 2020). However, most hospice providers offer routine home care which is not intensive and they only provide continuous home care for someone in a crisis who needs 8—24 hours ot care (Berry, Connor, & Stuart, 2017). Thus, much ot the hands-on care, including medication and pain management, is provided by family members, usually women (Seaman, Bear, Documet, Sereika, & Albert, 2016). Often family members are not prepared for the physical and emotional toll of caring for someone at the end of life. Even in countries that offer universal healthcare, caregivers are rarely paid, and they may experience emotional and financial hardship related to providing care (Rowland, Hanratty, Pilling, van den Berg, & Grande, 2017). Caring tor an adult with ID at the end of life may be more difficult for ageing parents or siblings who may also be experiencing late-life disability or their own chronic health conditions.

Suggestions for Improvement

In-home hospice providers need to be transparent about what services they provide and how often hospice providers will be at the home. This may mean repeating the information several different times using written and verbal mediums. It is critical that family or community agency residence administrators and staff understand that either they are responsible for providing much of the hands-on care or they will need to hire and pay privately for a professional caregiver. Hospice providers need training on working with adults with ID. They also need to offer ongoing support to families dealing with the emotional and financial toll caregiving takes. Given the rapidly ageing population of adults with ID, hospice providers should make an effort to reach out to community agencies serving adults with ID in order to form care networks (Bailey, Doody, & Lyons, 2016).

In the United States, the Erie County Medical Center provides a unique palliative care program that trains medical students and community volunteers about the process of natural dying, stages of grief, spirituality through end of life, and compassionate caregiving (Grimm et al., n.d.). These trainees serve as mercy doulas, or companions, to people who are dying and do not have an established network of family and friends. Recently, this program partnered with local community agency residences and the mercy doulas now provide comfort and support to adults with ID, any involved family, roommates and friends, and agency staff caregivers. Although there is little research regarding the efficacy of doulas at the end of life, this emerging model addresses some of the gaps within existing community-based, end- of-life care tor adults with ID (Rawlings, Tieman, Miller-Lewis, & Swetenham, 2019).

Community Agency Residence Care at the End of Life

Many adults with ID who are cared for in family homes will experience a transition into a community agency residence as their family caregivers age, become ill, or die (Bigby, 2010; Brennan, Murphy, McCallion, & McCarron, 2018). While this transition may be initially difficult, many families assume that once an adult with ID is in agency care they will remain there forever (Bigby et al., 2011). There is often no discussion about what will happen when an adult with ID experiences functional decline or has advanced illness. Prior discussions about end ot life may be lacking because agency staff are either reluctant to discuss death or because this may not be perceived as part of their role (Tuftrey-Wijne, Rose, Grant, & Wijne, 2017). As the case example illustrates, end-ot-life care for adults with ID living in community agency residences may become a crisis tor everyone involved because difficult, lifechanging decisions must be made quickly.

Staff caregivers in community agency residences may become like family and want to provide end-ot- life care (Hunt et al., 2019). However, most agency staff are untrained, have no or limited resources, and are unprepared for the emotional and physical challenges of providing end-of-life care (Kingsbury, 2010; Tuffrey-Wijne et al., 2017). When in-home hospice is received in the community agency residence, there may be some confusion between agency staff and palliative care providers about their specific role.

Suggestions for Improvement

Administrators in community agencies need to decide whether or not the agency is equipped to provide end-of-life care in their residences. Once a decision is made, this policy should be clearly articulated to adults with ID and their families, guardians, and trusted others. They should be informed about what services are provided when someone experiences functional decline or becomes ill. There also needs to be transparency about under what conditions they will transfer someone out of their agency residence and the likely features of the transfer process, including where the adult with ID might be transferred to.

Agencies that provide end-of-life care in community agency residences should designate a staff person, e.g. social worker, to reach out to local hospices and hospitals to form professional networks. These agencies should also identity staff willing to be involved in end-of-life care and seek the advice of hospice providers on establishing end-of-life protocols. Agency staff who provide end-of-life care need training about how to support the adult with ID, their family, other adults with ID in the day and residential programs, and other staff at the community agency residence (Hunt et al., 2019). Recently, a one-day training course developed for community agency staff on discussing dying was shown to decrease their self-reported worry and increase their knowledge about conveying bad news to people with ID who are ill (Tuftrey-Wijne et ah, 2017). Ideally, all staff should receive some training on end- of-life care; however, that may not be feasible given limited resources and workforce challenges. A small end-of-life committee may be sufficient tor providing support and training as needs arise. Given the increased ageing population of adults with ID, staff in community agency residences will at some point support someone at the end-of-life and the quality of their and the dying person’s experience will depend largely on their preparedness tor these scenarios. Agency staff who provide direct end-of-life care need on-going support and referrals to bereavement services.

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