I know of few students who aspire to serve in end of life care. I sure didn’t. If anyone had told me that I would spend the first decade of my professional life serving the dying and their families as well as thinking, writing and talking about death and I dying, I would have thought that person to be morbid, strange, and sad. Most of society does not think nor talk about death and dying until absolutely necessary. Why would someone freely choose to do so?
I have learned that there is a small, but growing, group of outliers who sit with relative comfort in the face of mortality for the sake of all of us who will inevitably face it. This group consists of select nurses, social workers, pastors, health aides, computer technicians, billing specialists, fundraisers, volunteers, and physicians who devote their lives to a short but sweet window of time—the last months, days, and moments of life on earth.
What does a day in the life of these people demand?
1. Teamwork. Early on in the hospice movement, professionals saw that at the end of life the true nature of being human is revealed: We are multi-faceted beings who present an infinite mix of strengths and weaknesses physically, emotionally, relationally, communally, financially, and spiritually. To serve the human being well, we must address pain, weakness, confusion, safety, hunger, worry, legacy, regret, forgiveness, and hope on each of these levels. Each person a hospice team serves needs different eyes and hearts serving them in order for the whole person to live freely.
Because of this diversity of professionals, the greatest challenge to a hospice team is communication. Most professionals who stay in hospice care are confident enough to step into a patient’s home alone and trust that they will be able to properly assess and meet the needs that present themselves. However, they must also be humble enough to listen and learn from what the bath aide saw that morning at 7:30am or from what the call nurse will see at midnight. Each team member lives in a blessed gray area where they have a great deal of power and yet no power at all. This reality leads me to the second demand.
2. Flexibility. Most hospice teams devote some time each year to team-building exercises that are grounded in some form of personal inventory that leads to increased self-knowledge. We are constantly looking for the common personality traits or thinking styles that will help us better understand and talk to each other so that we can best serve those who are dying. One trait we found that many of our team members shared was a certain level of flexibility. Not too flexible but more flexible than the average person. Unlike in other healthcare fields and settings, we constantly face situations we have never faced before in local homes where we cannot walk down the hall to get some supplies or call downstairs to a pharmacy. Each individual reacts to disease and interventions differently due to our unique chemical make-up, levels of pain tolerance, goals, hopes, and ways of expressing ourselves. You then mix that individuality with the endless variations of family and caregivers in an endless array of homes and rooms, every day is an adventure.
If you are facing the last months of your life, you want professionals in your home who are ready to jump in and figure out how to meet the complexity of your life.
3. Mystery. At the end of life, there is still much that we cannot explain. Why does someone who is up and walking and talking and eating lie down that night and die in their sleep? Why does someone who has been non-responsive for a week, not eating or drinking, linger on? Our bodies, our souls, remain a mystery, and the hospice professionals I know never cease to be in awe of witnessing and naming that mystery.
Although about and especially experiencing death may be something many of us fear, I take solace knowing that there are hospice teams ready to walk with us at that time. Professionals who are ready to see each of us as the complex individuals we are whose lives demand dignity simply because we share in the great mystery of life.
Amy Ziettlow blogs at Family Scholars.
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