“Oh God, I Have Lost Myself:” Palliative Care and Alzheimer’s Dementia

Lonely senior woman

Alzheimer’s remains an incurable, fatal disease suffered by more than 5.5 million people.

EDITOR’S NOTE: The following article appeared in the RACmonitor on Nov. 16, 2017. The story is reproduced here in recognition that November is National Alzheimer’s Disease Awareness Month. On Nov. 2, 1901 Karl Deter brought his 51-year wife, Auguste, to a mental institution called “Irrenchloss” (Castle of the Insane) in Frankfurt, Germany. She was suffering from delusions, memory loss, and insomnia, and would scream for hours while other family members attempted to sleep.

She was examined and questioned by an attending doctor who kept copious, thorough notes that can still be read today. Auguste struggled to answer questions with rambling responses that would sometimes conclude with, “oh God, I have lost myself.” Auguste’s conscientious physician was Dr. Alois Alzheimer (for more information, go online to http://alzheimer.neurology.ucla.edu/pubs/alzheimerLancet.pdf).

Although Dr. Alzheimer left Irrenchloss a year later, he continued to frequently visit Auguste until her death there in 1906 from an infected bedsore. Upon her death Dr. Alzheimer requested that her records and her brain be sent to him. Pathologic examination of Auguste’s brain tissue showed the classic findings of what became eponymously known as Alzheimer’s disease (AD). In 2006, a century later, modern genetic testing identified the Alzheimer’s presenilin 1 genetic mutation in Auguste’s brain matter (http://www.thelancet.com/journals/laneur/article/PIIS1474-4422(12)70307-1/abstract(12)70307-1/abstract).

Today, the clinical symptoms, pathologic findings, and causes of death associated with this feared disease have remained unchanged. It remains as in August Deter’s case, an incurable, fatal disease. There are no treatments that can reverse the progressive physical and mental deterioration of AD. It continues to be a terror for those who develop it and a torment for the loved ones who attempt to care for them. Along with cancer, it is among the most dreaded diagnoses to hear pronounced.

Although AD is as agonizing as cancer, the suffering is more difficult to ameliorate for a number of reasons. The clinical trajectory of cancer is usually a period of stability or minimal decline ending in a crescendo decline signaling approaching death. This course makes the prognosis of a cancer death easier, and this clinically clear end fits nicely into Medicare’s requirement of less than six months of survival to qualify for hospice care. The course of AD is a prolonged, inexorable slide towards death, which can make meeting the six-month hospice benchmark difficult. It is hard to predict when an AD patient will die.

There is also a more terrifying aspect of AD that cancer patients do not experience. As humanly horrible as a cancer death can be, it is only a single death. Those whose lives have been invaded by malignancy remain themselves – perhaps in pain, but sentient of who they are, who loves them, and who they love, until the end. Those stricken with AD die twice. First, as Auguste’s piteous cry, “oh God, I have lost myself” capsulized, they experience the death of who they are. This death of self is more frightful than the death of their body. It is harrowing to contemplate losing one’s identity, control of one’s life, the ability to care for loved ones, and instead becoming a burden to them.

At this moment, an estimated 5.5 million people are living with AD. The majority of AD sufferers are older than 65, and almost half of everyone over 85 has some form of dementia. As the baby boomers continue to age, the number of them afflicted with dementia is projected to almost triple in the next 30 years. AD will be an increasing burden for many, and for many years to come.

A terminal diagnosis of AD is fraught with obstacles for those who want to control the way they die or family members who want to intervene with palliative care. Dementia kills slowly, frequently over a span of years, and unlike many terminal medical processes, there isn’t a plug to pull – there is no life support to discontinue, no chemotherapy to stop, and no dialysis to terminate. Dementia patients have no life-sustaining or high-tech treatments to withdraw. Even in states where physician-assisted suicide is legal, mental competency is a requirement for the administration of lethal medications to end life. Physician-assisted suicide is legal in some states, but involuntary euthanasia is not legal in any of them.

The role of palliative care in dementia remains the same as in every terminal illness: prevent unnecessary suffering of the patient and their loved ones. The protracted courses of AD and the inevitable loss of patient competency make early planning especially crucial. Simply put, the palliative care plan must be devised not at the end stages of the dementia, but in the beginning, before the patients “lose themselves.”

Although AD has a protracted course, it has a predictable end. For most, there are no final sentinel events, such as a fatal heart attack or a lethal stroke. Progressive dementia leads to recurrent infections, difficulty eating, increased agitation, episodic delirium, and the companion of all terminal processes in life – pain. All of these will come into the lives of anyone with AD. They must be planned for, hopefully before the dementia kills the mind, but if it already has, then planned for with the best interests in mind of those who have lost the capacity to plan for themselves.

The cornerstones of any strategy to deal with an extended, ruinous disease must be an advanced directive that clearly expresses the wishes of the patient regarding what types of care they want or do not want, along with a practitioner orders for life-sustaining treatment (POLST) form and written physician orders ensuring adherence to the provisions of any living will. But unlike most patients with most terminal diseases, who can coordinate their care until near the end, those with AD will have no mental capacity as their end approaches. This makes early and clear communication with family and physicians paramount. More than any other disease, the death of those suffering from end-stage AD comes at the mercy of others, and there is an obligation to ensure that death is a mercy.

The notion of “mercy” at the end of AD is not like that associated with other illnesses, when things are done to provide comfort. At the end of AD, mercy very often involves not doing anything. While this sounds dire, there is an increasing wealth of literature demonstrating that patients with constant anxiety and agitation, complete dependence for activities of daily life (eating, bathing, toileting), extreme difficulty or complete inability to walk, and ability to speak only a few intelligible words do not benefit from regular medical care, including antibiotics, routine medications, tube feedings, or even hospitalization.

Studies show that hospitalization for IV antibiotics do not improve the quality of life, but this is often a cause of acute delirium in AD patients. Continuing medications for other medical diseases only expose the AD patient to side effects without benefit. These should be withheld because they do not relieve suffering, but can prolong the life of a patient with AD, which means prolonging their suffering and that of their loved ones. More than any other disease process, the physical and psychological suffering of the AD caretaker must be considered. AD, while not contagious, sickens those who heroically strive to respect the dignity of their loved ones suffering from a disease that continually strips dignity away.

Withholding feedings is fraught with emotional conflict for loved ones, as eating is felt to be a basic human activity. There are many good reasons and widespread agreement that feeding tubes are not only not beneficial to those in the last stages of AD, but in fact quite harmful to the patient. Demented patients often pull their tubes out, injuring themselves. To prevent this, they must be restrained, physically or pharmacologically. Feeding tubes get clogged or dislodged, requiring hospitalization. Worse yet, there is an increase in the development of pressure ulcers – the type of bedsore that killed Auguste Deter – in patients with feeding tubes, because the patients spend more time in bed and have more diarrhea. Most damning is that studies show that feeding tubes do not keep the terminally demented alive any longer. Families often insist on feeding tubes out of a mistaken sense of obligation “to feed” their loved ones. It is the physician’s obligation to inform the family that feeding tubes are harmful and not helpful.

While feeding tubes are a proven harm and can be avoided by a living will or POLST form that prohibits them, spoon-feeding is more problematic. Some courts have held that advance directives completed by a previously competent patient specifying that they wish no oral feeding are not applicable to their presently incompetent selves, who continue to open their mouths when offered food. More recently, courts are revisiting this issue, and tending to allow the enforcement of no oral feeding as long as ample palliation of any possible thirst or hunger is available. For the courts, it is a legal issue, but for the caretakers of those with end-stage AD, spoon feeding is often their last way to express care for a loved one who is no longer present. The angst of not feeding a loved one requires that in planning for their end, AD patients absolve their loved ones from the guilt of allowing them to die of starvation and dehydration.

There is a special form of torture for those facing death by dementia. We all know we will die, but most of us will live in our bodies until death occurs. Those suffering from AD lose their minds behind before their heart stops beating. The torture is that they will no longer recognize or be recognizable by those they love.

The course of AD is tortuous, but it can be made less so by thoughtful planning and frank discussions of what care they want and do not want – before all they can say is, “oh God, I lost myself.”

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