At the End of the Long Death

Most end of life decisions rarely make the headlines, but they still blister the mind and abrade the conscience. There are loitering scars left, choosing things for a loved who cannot choose, which treatment to accept, which to perhaps refuse. I ruled out a feeding tube for my mother. It was a low drama decision, but it bothers me.

She suffered from mild dementia, suddenly aggravated following surgery to repair a broken hip. She didn’t fall and break it. For the elderly, typically the hip breaks and then follows the fall.

Patients with dementia rarely emerge unscathed from anesthesia. Confusion often deepens, especially when the comforting familiarity of home is replaced with a rehabilitation unit. While mortality rates vary study from study, within three to four months following surgery for a broken hip a full third have died. Mortality touches seventy percent within a year. Women especially are at risk. My mother was one of them.

I knew the likely outcome; I had seen it before. The doctor knew it too. Had it been my choice, I would have kept her comfortable and out of pain. The surgeon dismissed it. He was “where there’s life, there’s hope.” Like all his patients, she deserved a chance at healing and rehabilitation.

She never walked again, her dementia intensified and she was unable to participate in any rehabilitation. Cause-of-death studies following hip surgery are most commonly attributed to circulatory complications, dementia, Alzheimer’s, or the like. The doctor had four broken hips that night; my mother was last in line. The operation is a routine success, save for the patient. She stopped eating as time passed.

The rehabilitation center where we initially placed her rejected her within days and I had to move her elsewhere. There was no rehabilitation available to dementia patients. We found a nursing home. By this time I had legal guardianship. But nursing homes in that state were not permitted to accept “do not resuscitate” (DNR) orders. If my mother reached critical, as was certain to happen, the facility would transfer her to a hospital with heavy-duty medical intervention.

The nursing home sent her to the local ER when her blood pressure dropped drastically. There, I could order a DNR. When I arrived the ER staff was pursuing everything. I caught the physician, presented my guardianship documents, and told him to stop anything of an extraordinary nature, unless he had a better approach in mind. He didn’t. They stabilized her and returned her to the nursing home. Later that day I arranged for a visiting hospice agency to provide for her care at the nursing home. A feeding tube, an option offered in the ER, would have led only to greater confused distress for her. It represented another needless medical intrusion; an opportunity for aspiration and pneumonia.

She died quietly within a few days.

The Catholic Church has always taught that suicide and euthanasia are morally wrong. This, along with objections to the exposure of children (the first century’s version of abortion), was one of the early distinguishing characteristics of Christian moral teaching.

But never has the Catholic Church required that all possible medical procedures be employed on a patient. Even withdrawing or withholding certain procedures that might indirectly hasten death as a result are permissible when they are shown to prolong not the life, but the suffering of the person.

The Church has a long history of differentiating between “ordinary” and “extraordinary” circumstances (see Catechism of the Catholic Church, 2278-79). The “ordinary” minister distributing Holy Communion, by example, is the priest. At his option he may employ “extraordinary” ministers, lay people, to help.

The same exists as the Church employs those terms medically. Feeding tubes, intravenous hydration, ventilators, all these are things of ordinary care and normally morally obligatory for patients able to receive them with benefit. Judging the benefit, that’s the abrasion one lives with afterward.

Ordinary care can become extraordinary, and therefore optional. The ordinary may be withdrawn when continued use would conflict with other responsibilities that are owed to the patient, or when it becomes overly burdensome. We are not permitted to regard the dying as burdens, but equally, we are not to be inexorably driven to exploit every available medical procedure, especially in instances promising, at best, obviously futile outcomes.

The ethical teaching seems clear, but rarely is it only abstractly academic, and even less a handy check-off list on a note pad. The actual day-to-day is chaotic, an exhausting grind. Four times with loved ones I have confronted what I call the Long Death, days stretching to months. Cancer, ALS, renal failure, dementia. A Long Death is always accompanied by medical choices and practical care decisions large and small. Emotional upheavals arrive unbidden and doctors often urge just one more thing to beat back death, every day in somebody’s view being a “victory” for life.

For the Christian, living in this life shadowed by a better hope, “just one more day” is a counterfeit wish. For most of that time, with my mother insensible, feeling like I was making it up as I went along, my only certain prayer was this:

“In company with angels and triumphant saints, may Christ come to greet us when we leave this life.”