By Linda Schlafer, PhD, BCC
Hospice is a home care service in that we visit our patients wherever they live. This may on occasion be in a hospital or hospice house, slightly more frequently in an assisted living facility, and most often in a nursing facility or private home.
Most hospice workers I know visit in all of these venues except possibly the hospice house, since not all hospices have access to a hospice house, and sometimes staff are assigned just to a hospice house when there is one. Generally, we are just known as “hospice” as distinct from other healthcare workers who go to homes (again, wherever people live) but do not provide hospice services.
I don’t see hospice as “the wave of the future.” I hope that it will continue to grow in people’s acceptance as a healthcare option that is available to them, but I think this will continue to happen relatively slowly, primarily by word of mouth from families of patients who have had a good hospice experience. It is definitely positive for more people to know about and accept hospice services, and it would also be wonderful if many more people were willing to go to hospice services much earlier in the end-of-life experience. This often does not happen until close to the time of death, when family members are desperate for support and skilled services and can no longer avoid the knowledge that their loved one will die soon, with or without hospice. Hospices can offer much more by way of support and services if individuals participate for extended periods of time (i.e., as soon as they qualify, not in the closing days or hours of a person’s life). Of course, we are willing to provide whatever help we can at any point in the process.
I was a hospital chaplain before I began working for hospice. Some things that have changed, or at least have taken on greater emphasis in my ministry, are that I provide more of what we call “intentional presence and comfort measures” than previously, as many of my patients are not conscious or are not able to carry on a conversation. I have also learned that patient conditions can change quickly in hospice, so while I might naturally want to have a period of weeks or months to initiate and develop a relationship, it is not uncommon that my relationship with a patient begins, develops, and ends in one visit, even if the patient seems alert and coherent. I don’t always get another visit if a person declines quickly after that.
There is usually an interdisciplinary component in hospital chaplaincy, but teamwork and the weekly interdisciplinary meetings take on a much greater importance in hospice. In the hospital, my team was primarily made up of other chaplains. In hospice, I am the only chaplain and my team is made up of support staff, nurses, social workers, hospice aides, and the volunteer coordinator. Strangely enough, I was called to almost every death in the hospital, but in hospice, it is usually the nurse who makes the death visit, and the chaplain goes only if invited by the nurse for specific reasons.
Hospice care requires 24/7 primary caregiving by a family member, friend, or hired caregiver. Hospice is present in a home for the sake of the patient, but also for caregivers and family members, or anyone else closely associated with the patient. Hospice provides the services of all the team members mentioned above, plus volunteers who go to patient homes to provide an additional variety of services. This gives patient and family a lot of professionals in different disciplines to keep close watch on the patient and caregiver and to be accessible to them on a daily basis to answer questions, provide education, social and spiritual services, and hands-on care.
Aides and volunteers will even style hair and paint fingernails! This gives families and patients a kind of skilled companionship that raises morale, troubleshoots, and gives confidence in caregiving and in knowing what to do at the time of death. Especially for an elderly spouse who is caregiving without other family support, this kind of companionship is essential. In all of the things I’ve mentioned, of course, there are great individual and family differences as to what is needed, what is tolerated, and what special conditions may apply. I find this a very interesting job due to the variety of personalities and situations involved and find it a great privilege to share this sacred space with our patients and families.
Linda Schlafer is chaplain and bereavement coordinator at the Hospice of Southwest Iowa in Council Bluffs, IA.
