Early Tipping Points
Today, I want to speak of the real work of hospice from the perspective of those doing the “real work.” This is the extremely hard work the families do and the tipping point choices they make.
For those of you who are here seeking to understand hospice, it must be noted that the care of the patient is done largely by the family. When hospice is brought into the lives of the families, we do not assume 24/7 hands-on care of the patient. That is still the “work” of the family. Sometimes the family is close, attentive, and able to adapt their lives to fill the role of caregiver. This is always optimal and tends to make the hospice experience easier for everyone. Though the family may be united, the work is hard, the letting go difficult, and the challenges real for those living closest to the patient.
Many times the care team is cobbled together with a variety of people and may include a combination of actual relatives or the acquired “family” of life’s experience. I am often in awe of the diverse group that sometimes forms to journey with a patient at the end of life, when through circumstances or through choices made, the patient has no family. Sometimes through the life choices of the patient, they have estranged those who were their family. Sometimes it is because they simply don’t have anyone living who is a relative close enough to step forward to assume this huge responsibility for them. I have seen completely unrelated neighbors or friends quit jobs and take a dying person into their homes to care for them in the most intimate ways possible. I have seen vagrant homeless companions act as the primary caregiver of someone they had become a brother to on the streets. In each way, these noble souls make decisions to take on the “care” of their dying friend/associate/neighbor, however inexpertly they can, because no one else was available. To all of these groups, we go as hospice workers to teach, companion, and consult in this very hard work they have before them.
Let’s explore the tipping points these caregivers have already faced thus far:
- To treat or not to treat the illness that has made them eligible for hospice.
- To have an order for Do Not Resuscitate (DNR) or to have full resuscitation.
- To discontinue certain medications that were treating their illness or to not discontinue them.
- To call hospice before going into the hospital with the goal of NOT going to the hospital.
- To allow a cadre of strangers (hospice workers) into their home, with no less than three to five arriving in the first week alone.
- To allow their home to be rearranged to accommodate medical equipment.
- To take on complete, around-the-clock, care of a patient who may have episodes of pain, incontinence of bowel or bladder, falls, confusion, combativeness, nausea, or vomiting.
- To be willing to learn about and give medications.
- To be open to being awakened in the night to perform care tasks.
- 1To be available to be with, or arrange to have someone with, the patient 24/7.
These are some of the practical decisions that are faced as we begin our assistance to the families / caregivers before a patient comes onto hospice. These issues become much smaller and more manageable as the journey goes on and the team begins to understand the practical nature of dying. But there is more to this story than the practical issues. There is a larger backdrop to the practical act of dying. Some of the heaviest lifting is done by the caregiving team (hospice workers included) against the backdrop of emotional giving. Check back for our next blog on the Emotions of Facing Death.