Dementia is a deterioration of mental functioning that causes loss of memory and judgment. Personality changes associated with dementia are often quite severe. A previously pleasant and calm individual may become irritable and inconsolable with the slightest change of routine. Caregiving and medical treatment of people with dementia is wrought with a number of ethical dilemmas. How much invasive care is legitimate when experienced by a person who interprets the procedures with confusion and fear?
Physicians and family members are commonly on the front lines of this difficult decision-making, but societal changes hold the potential to ease these painful choices. Gillick (1994) is a physician who has experienced the hardships of treating patients with dementia for a number of decades. A case study presentation demonstrates the complex scenarios faced by doctors daily. Mr. Brown, an elderly man with dementia, was one of Dr. Gillick’s earliest patients. Mr. Brown’s case illustrates the limited power allotted to doctors to consider the factors of pain and necessity when determining paths to diagnosis and treatment.
Dr. Gillick was bound to a protocol that required him to perform multiple tests, many of which were painful and revealed inconclusive results because Mr. Brown remained uncooperative throughout his stay. Dr. Gillick recommends placing more decision-making into the hands of well-trained professionals. Many people believe that family members, or next-of-kin, should be responsible for making medically-related decisions if the patient is incapacitated or otherwise unable to make autonomous decisions. As demonstrated by the cases of Maria and Mrs.
Chang, the involvement of concerned family members can be facilitative or challenging to the delivery of dignified end of life care to patients with dementia (Gillick, 1994). Some family members, like Maria’s son, have an extraordinarily difficult time making decisions in light of their loved one’s long-term prognosis. In contrast, Mrs. Chang’s family responded positively to the intermediate options of care offered to treat their mother’s acute illness. Rather than present families with the choice between one extremely invasive medical intervention or doing nothing, Dr.
Gillick advocates for creative and person-centered approaches that increase the options available to families. Callahan’s (1995) extensive work with elderly patients with dementia provides further support for the moral obligations tied to treating these individuals and their families. In an era where technological advances have ballooned past ethical agreements, it’s becoming increasingly important to open the dialogue about the uncomfortable topics of suffering, dementia, and death.
Setting limits with objective criteria, like age, would be one way to reduce the heartbreaking struggle lived by family members providing care to loved ones with dementia. These limits could also provide dignity and peace to those who do not have support or contact with family or friends. Although the term limits implies restrictions and barriers to technologically advanced medical care, Callahan supports the use of sensible limits to improve the quality of life for patients with dementia.
The ultimate goal of medical intervention can easily be misunderstood to be the extension of life. Callahan (1995) argues there should be other goals to consider in the decision making for incapacitated elderly patients. The ability to relieve pain and suffering are not always obtainable through the same route. Most types of pain can be removed at least partially with medication, but suffering is more difficult to eliminate. Many question whether a severely sedated, physically restrained, and medically invaded existence is the very definition of suffering.
The burden of treatment must be examined in light of the expected gains. For elderly patients with a number of deteriorating mental abilities, the side effects of treatments or potential loss of functioning may deem the procedure unjustified. Lastly, medical intervention should seek to maintain or improve quality of life for all patients, including those with dementia. Quality of life is another precarious ethical battleground for advocates and medical professionals.
Many fear the application of a universal definition for a tolerable quality of life. As demonstrated by the Nazi’s, it’s a dangerous course of action for society to allow any one group or individual determine which lives are worth living. Callahan outlines the difficulty in these decisions with the underlying message to enter these factors into the larger discussion about end of life care for patients with dementia. There are a number of startling statistics associated with dementia.
It’s far more common than cancer (Gillick, 1994) and a large proportion of individuals living in nursing homes live with at least mild to moderate dementia. Family members who try to care for their loved ones at home struggle with the intense level of round the clock care demanded. Few resources are available the limited choices offered to physicians can make their experiences even more difficult. Callahan (1995) and Gillick (1994) attach an individualized focus of the problem as it has related to real patients and real families.
Each patient is truly unique, but comprehensive changes to our society’s view of death, the loss of mental functioning, and end of life care could make a radical difference in the experience of dying with dementia.
Callahan, D. (1995). Care of the elderly dying. In Setting limits: Medical goals in an aging society (pp. 164-185). Washington, D. C. : Georgetown University Press. Gillick, M. R. (1994). Robbed of mind and memory: The demented elderly. In choosing medical care in old age (pp 15-41). Massachusetts: Harvard University Press.