Sunday, July 13, 2008

Notes on Hospice: The Gift of a Death at Home

He lay there in the bed, feet extended in permanent contractures, arms curled at his chest, immobile. Ulcers burrow deep into various parts of his body: sacrum, hip, elbow, shoulder, right ear. He is non-verbal, eyes intermittently open, but what---or if---he sees is up for conjecture.

At this point of the end of life process, there are no more fluids being given, and no more food. Morphine is delivered via a pump that sits on the bed-side table like a silent sentinel. A small needle is inserted under the skin in a part of the body where there is still some semblance of subcutaneous fat. Once there is absolutely no fat left, this mode of delivery may not work as well.

A "rattle" is now heard in the chest as fluid builds up in the lungs. One really needs no stethoscope to know what's going on. With the kidneys shutting down, whatever fluid is in the body simply shifts into places where we can hear it make its presence known.

One of the most disturbing things to family members and loved ones is the gurgling in the throat. Fluids with nowhere else to go sit in the throat, and this disconcerting sound can be heard whenever the patient takes a breath. Medications like scopolamine and hyoscyamine are given under the tongue or as a patch behind the ear to dry up these secretions, decrease drooling, and literally quiet the noise.

Speaking of breathing, as the end approaches, periods of apnea ensue, the patient taking a breath and then pausing for five, ten, even twenty seconds at a time before taking another one. Family members witnessing such an intimate and painstakingly slow process can literally be on the edge of their seats as they wait for the subsequent breath. These apneic pauses where breathing simply suspends become longer and longer, until the fateful moment arrives and an apneic pause simply extends into eternity.

The moment of death, long awaited and often dreaded, can be wholly undramatic. The patient takes a final labored inhalation, and the exhalation simply never comes. Last September, we watched my step-father go through this process, and that last intake of oxygen hung in the air like an unfinished promise, all of us anxiously encircling his bed, our own breath held tight in anticipation of an end we knew was so very, very near.

When the life in the body ceases, when all animation leaves the face and the eyes become vacant and literally lifeless, that is the moment when mourning begins. Anticipatory grief now gives way to active grieving for the one who has exited this world.

Death at home is not an emergency, and families can take as much time as they want as they sit with the body of their loved one. Once those informational telephone calls are made, the hospice nurse and the funeral home director will arrive on the scene, and the removal of the body becomes the focus. When my step-father died, I suggested we wait an hour or two before making any official calls, simply taking some time to be in the room with his body, admiring his peaceful demeanor and the way the cessation of all suffering had smoothed his brow. I have encouraged other families to do the same over the years, and now as a hospice nurse, I will make it my mission to allow patients' families that gift of time following death's arrival at the doorstep.

Death is an intimate and beautiful process, and allowing it to happen in the home---where life is a constantly unfolding moment---is one of the greatest gifts that we can give the patient and the family. Years ago, prior to the medicalization of both birth and death, those two very crucial life processes almost always occurred at home. Now, as rare as it may be in our industrialized culture, birth and death have once again gained some ground at home, with many families reclaiming the home-based intimacy and immediacy of beginning and ending life in the family nest, in the crucible of family life.

Death, that most inevitable of processes, is something we know can be given as a gift to both the patient and the family, stripped of unnecessary medical drama, its pathos and emotional gravity intact. With the patient comfortable and free of pain, this passage now becomes one that can occur within the context of home life as children play in the yard and soup cooks on the stove. The patient can now take his or her leave, comforted by the voices of children and the familiar smells of home.

Did I say that a tranquil death at home was a gift? Yes, it is a gift wrapped with love and sealed with the ribbon of compassion.
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