Terminal Sedation at the End of Life

“Be calm. God awaits you at the door.”
― Gabriel García Márquez, “Love in the Time of Cholera”

Margaret was what I like to refer to as a “feisty” woman. Born in the United States of German-born parents, she held strong opinions about almost everything and had no qualms about making those opinions known. The word “tact” was not in her vocabulary. If she didn’t like your new hairstyle or thought your new car was a wasteful extravagance, she would let you know. 

To some, her personal style was a bit, shall we say, abrasive. But she made up for it in many other ways. In her early 80s, she managed vacation rentals for her son and daughter-in-law and volunteered as a grand juror on the side. She lived alone in the home she once shared with her husband and walked two miles a day, rain or shine. She cleaned her own house and cooked all of her own meals. She loved to entertain, and was a gracious hostess when the opportunity arose. A few years before she died, she even adopted a dog who needed hospice care. 

So when Marge suffered a catastrophic stroke, it was a shock to everyone she knew. 

The Best Laid Plans

Marge’s stroke happened like most strokes — “out of the blue.” She was on blood thinners for atrial fibrillation, and her children later theorized that she had been taking more than the prescribed dose. (She had done so before). Whatever the cause, she had an intracranial hemorrhage, what doctors call a “hemorrhagic stroke,” and laymen call bleeding in the brain.

Marge was alone when the incident happened, and no one ever knew exactly what transpired. She was spotted by a passerby collapsed on her front lawn. The Good Samaritan called 9-1-1, and the paramedics responded, quickly whisking her off to the local Emergency Room. Another unit stayed behind to look for an advance directive or power of attorney. Marge was unconscious and extremely unstable, and they wanted to speak with her family right away. 

Sadly, the first responders were unable to locate the advance directive that Marge had meticulously prepared. All they found was an address book, which eventually allowed them to reach someone who knew where the documents were kept. But by that time, the ER doctor was dealing with the reality that, unless he took extraordinary measures, Margaret would soon die. And so, despite grave misgivings, he arranged to have her transported by helicopter to a medical center 40 miles away. 

“I would not have done it if I had a choice,” the doctor later told her son. Her CT scan had shown massive bleeding in her brain. She would probably never regain consciousness,  and if she did she would almost certainly never be able to care for herself again.

Tough Decisions

To the astonishment of her doctors, however, Margaret did regain consciousness — at least for a short while. But the stroke had profoundly damaged the part of her brain that controls speech and language, causing “global aphasia.” She could speak, but her words made no sense, and it did not appear that she understood verbal commands. 

Marge was panic-stricken and inconsolable. She kept desperately trying to communicate as her family stood by helplessly wondering how they could help this proud, independent woman who could no longer tell them what she wanted or needed them to do. 

Meanwhile, the medical staff were still trying to get a clear idea of what was going on in Margaret’s brain, so they ordered another CT scan. During that scan, Marge suffered another stroke. When she returned to her room, she was no longer trying to speak. But she was agitated, thrashing about, and obviously in great distress. 

And, based on her latest CT scan, her prognosis for recovery was virtually nil. 

Because Marge couldn’t make any decisions herself, the doctors asked her son, who was her designated healthcare agent, what to do. It might be possible to prolong Marge’s life with aggressive treatment, they said. But she would almost certainly be confined to a skilled nursing facility for the rest of her life.

Or, the doctors explained, they could treat her with large doses of painkillers and sedatives, a treatment known as “terminal sedation.” Without any further efforts to control the bleeding and swelling in her brain, she would almost certainly die within hours or, at most, days. But the sedation would keep her comfortable for however long she had left.

Terminal Sedation Is a Reasonable Choice

Terminal sedation (sometimes called palliative sedation) is the administration of strong medicines to keep a person who is actively dying comfortable until the time of death. It isn’t euthanasia or medical aid in dying, insofar as the aim of sedation is to relieve suffering, not to cause death. Yet it can be difficult for the family of a person who is dying to separate the two. Sometimes that’s because they are having difficulty accepting that the person is really going to die. Sometimes it’s because the family’s religious or moral beliefs prevent them from withholding treatment, even if it is almost guaranteed to have no beneficial effect. Sometimes it’s a little of both. 

For Margaret, however, that was, thankfully, not the case. Her family knew beyond any doubt that this fiercely independent woman who never failed to speak her mind would not want to live as a shell of her former self. And they knew that prolonging her suffering, which was what aggressive treatment would do, would be horribly cruel and horribly wrong.  

Her son authorized the sedation, and within minutes of starting the drip, Margaret was asleep. She stayed that way, with her family at her bedside, until she died the next day. 

Should I ever be in Marge’s situation, I pray my family will do the same for me. 

About Kathleen

Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years of experience as a registered nurse caring for families and children facing a life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York. After relocating to California, she spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her knowledge and expertise to enlighten our readers about the challenges associated with chronic illness and its effects on family relationships.