By Allison DeLaney, BCC
I have been a NACC certified chaplain for the past six years (five in hospice care) and a physical therapist for the past 13 (in acute, rehab, and outpatient settings). This strange combination of careers has taught me a simple fact: timely matching of patient needs and wishes with placement is crucial for achieving patient goals. For example, if patients are truly at the end of their lives, then sending them to rehab is probably not the best plan. In fact, it probably will be counterproductive because the patient (and family) will inevitably spend energy working toward impossible goals aimed at progress.
Emotionally, rehab sets one up for the possibility of getting better. The thought process is, “My doctor would not have sent me to rehab unless she thought I was going to get better.” In contrast, if individuals who are dying are informed of their limited prognosis, and encouraged and guided on how to prepare, then their limited energy can be spent in a more meaningful way.
There are so many variables to consider when trying to support someone at the end of life: the doctor’s own view of mortality, the patient and family’s willingness to hear, the disease process itself, the doctor-patient communication process, the insurance company, and the financial resources.
I feel that home-based care, in most cases, supports the greatest choice, autonomy, and dignity at the end of life. When one is losing control of so many things – bodily functions, mobility, memory, and more – the familiarity of home can be of utmost comfort. In one’s home there are a collection of familiar smells, textures, pictures, memories and pets. So when it is possible, the home setting is an ideal place to accompany patients. They seem to thrive “on their own turf.” However, even though a patient’s wish may be to die at home, their physical needs may require more help than can be had at home – perhaps there is not a caregiver that can handle the amount of care, perhaps the logistics of the home make it unsafe for the patient, or perhaps it is financially impossible for the family. In these cases, I find myself learning to navigate with the patient through their lost hopes and disappointment in addition to the guilt of caregivers who feel that they have “failed.” Then together, we try to navigate the new setting and recalibrate our hopes to what is possible.
I also want to acknowledge those who adamantly don’t want to die at home. Some need to die trying every medical intervention the body can accept because anything else would feel like “giving up.” Some decide that they want to die in a facility so that they are not “burdening” their family or “leaving a bad memory in the house.”
In summary, I feel that home hospice is a wonderful option that should be offered to everyone. The way that one finds meaning at the end of life varies (and doesn’t always match my own ideal). So my journey as chaplain has been to educate myself on the myriad aspects that the patients have to reconcile in the time and place they have been given, and to support them where they are. In a strange way, the process of preparing for the end of life reminds me of when I was giving birth to my first child. I tried to prepare myself through facts, conversations, and consultation with the experts. I had an ideal that I wanted to achieve – no pain meds, breast-feeding, etc. – but in the end I just had to wing it in the moment and trust those available in my time of need. May we as chaplains be truly present to those nearing the end of their lives with their unique needs and expect the Spirit to guide us wherever we need to go.
Allison DeLaney is chaplain and bereavement coordinator for Hospice House and Support Care of Williamsburg VA