1. Edward's Story

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"Edward" is 86. [Note: The story could also apply to "Edith" who has breast metastatic breast cancer rather than prostate cancer.] After a successful career as a mechanical engineer/teacher, s/he retired. That was fifteen years ago. His wife/husband of 54 years died three years ago. He has one child, a daughter named Julie.

Six years ago, he received the diagnosis of dementia, probable Alzheimer's type. The dementia has progressed so that now it is severe (advanced stage). For the last year, he has not been able to recognize anyone, including his daughter. He cannot recall any significant event of his life. He cannot express any wish or feeling using words or gestures. He requires total care for feeding, bathing, eating, and for bowel and urinary incontinence.

A few weeks ago, Edward started screeching loudly. For hours, he calls out, "Mommy! Daddy!" His face is twisted with a fearful grimace and his whole body is agitated as he shakes both fists. The shouting continues until he becomes exhausted. Then he sleeps awhile, but when he wakes up, his horror resumes. Two days ago, Edward struck out and hit his daughter as she approached him with a warm soapy sponge—a caring way to clean him that had previously been routine and seemed a source of enjoyment.

More worried about her father's severe mental anguish than feeling upset at being hit, Julie requested the opportunity to discuss treatment options with Edward's physician.

Julie could hardly wait for the doctor to close the door of the skilled nursing facility's conference room to ask him, "For months, my father has seemed totally unable to enjoy any aspect of his life. Do you agree? Will he ever will enjoy life again?"

The physician frowned and shook his head. "Extremely unlikely."

"What about eating? He still eats. Can he still enjoy eating?" she asked, desperately.

"No. As you know, Edward lost the ability to feed himself and he no longer knows how to eat with a spoon, or drink with a straw. He still accepts food and fluid by mouth as long as another person assists the process. But the food must be thickened puree. Otherwise, it might slip into his lungs, which could lead to a lethal pneumonia. The puree must be placed at the very back of his tongue to stimulate his reflex to swallow. So he gets no pleasure from chewing and tasting."

Julie then asked, "What about my father's other medical diagnosis… his prostate cancer?"

"Initially his cancer was treated with radioactive implants. Often that provides years of cancer-free survival. But your father is otherwise a rather healthy man, and he has lived so long that his cancer came back. Relapses after many years do happen. Eventually, if he continues to live, the prostate cancer will metastasize, that is spread, to his bones. That could be challenging since bone pain is very intense and difficult to treat. Also, Edward has no way to tell us if he is in pain, or to indicate how much pain. So he might be suffering from pain that is not treated at all, or at best is undertreated."

Julie thought a while, knowing that as her father's Proxy, she was now responsible for making his medical treatment decisions. Her tone softened as she asked, "Doctor, I'd like you to tell me all my father's options, okay?"
The physician nodded. "We could make the likely assumption that your father's symptoms of agitation—his facial grimacing, his crying out, and his shaking both fists—represent pain. Clinicians in Europe frequently make this assumption more than those in our county. You could then authorize me to give him enough pain medication to relieve these target symptoms—even if the dose needed might hasten his dying. But don't be alarmed by the words, 'might hasten dying.' Widely adopted standard forms for Advance Directives use them, including the California Hospital Association.

Julie gave her consent to this treatment plan. Two days later however, the physician called her with an update. "Unfortunately, narcotic-like medications alone have not been sufficient to calm your father down. In my opinion, he also needs strong sedatives, like those used in anesthesia. Let me explain. "Sedation to unconsciousness" is a clinically acceptable and legal way to provide the most aggressive kind of Comfort Care. Most clinicians call it 'Palliative Sedation' although some use the term, 'Terminal Sedation,' since patients often do not wake up before they die. But the goal of treatment is focused on eliminating extremely distressful symptoms that cannot be treated any other way—not to hasten death. Since your father does not have a feeding tube, he might die of medical dehydration. This way of dying is actually very peaceful—even for patients who are awake, as long as symptoms of dry mouth are treated. If you choose this form of Comfort Care, we may never know what your father actually died of. Possibilities, in addition to dehydration, include prostate cancer, an undiscovered infection, a stroke, or a heart attack—or some combination of these. It is even possible, although less likely, that he might live somewhat longer this way if he avoided getting aspiration pneumonia."

Adding sedatives did allow Edward to finally become peaceful. Julie was initially relieved, but then she had a vague but intense moral pang. She asked the doctor to lighten up the sedatives. She stood by the bedside as her father woke up. As she watched her father's agitation and facial grimacing return, she became certain that this treatment plan to sedate him was the right course of treatment for her father. Still, Julie felt compelled to remind the physician, "Just be sure you administer only enough medication to control his symptoms. Please understand: I never want to feel that I authorized an overdose to hasten his dying." The physician not only agreed; he also assured her again that he was carefully titrating the dose of medications to only treat Edward's suffering.

After eight days of total sedation, Edward stopped breathing. Julie thanked the physician for his compassionate care. Later, when she thought about her last conversation with the doctor, she recalled having no need to ask him what he thought was the probable cause of death. The only thing that seemed important was that her father's transition had been peaceful.

Notable comment: Edward’s act of hitting Julie prompted his daughter to request a full discussion about his treatment options. Only then did the physician (1) explain that agitation might be due to pain, and (2) offer Palliative Sedation. Many physicians are reluctant to bring up the option of Palliative Sedation and some just won’t, because of their beliefs. Similarly, physicians may be reluctant to explain the option to cease Skilled Assistance with Oral Feeding. One wonders: how many patients with Advanced Dementia who cannot express themselves are suffering from undiagnosed and untreated pain? How many patients have suffering prolonged by continuing oral feeding, when they cannot experience any pleasure in life? We don’t know the exact answer, but the number could be huge. (See the book, "Peaceful Transitions: Stories of Success and Compassion" by Dr. Stanley Terman.)
One lesson from this story is this: Do you want to take this risk? Must all, including the patient, wait until “the patient’s condition has deteriorated to the point that quality of life has become completely absent [to] diminish uncertainty” or wait—-perhaps years—-until a triggering event, such as pneumonia? If this is not your choice, strive diligently for an ironclad strategy to avoid a horrible last chapter of life, one plagued by mental and physical suffering, that will also make it easier for your family members to decide when to stop life-sustaining treatment.
Of interest: More than a year after this survey went on line, Melinda S. Lantz, MD, of the Beth Israel Medical Center in New York published an article entitled, "Verbal Outbursts in a Patient with Dementia," in the journal Clinical Geriatrics, which portrayed a 78-year old man with a very similar presentation.

After screaming began, doctors tried another medication for Alzheimer’s disease, then a combination of three medications (which individually are approved for treating depression, seizures, and psychosis). Finally, “the issue of pain was raised as a factor in his calling-out behaviors. X-rays of his knees and hips revealed moderate-to-severe osteoarthritis.” After “injections of steroids into his knees… episodes of cursing, screaming, and moaning rarely occurred.” So pain turned out to be the real culprit.

The article can be read on-line at:
http://www.clinicalgeriatrics.com/articles/Verbal-Outbursts-a-Patient-with-Dementia

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