Alzheimer’s is a grave disease that affects patients and their families that often presents a number of ethical dilemmas to both.
Breaking the news of a dementia diagnosis is not only heartbreaking but is a decision that many families struggle with. Research has found that many people with dementia or Alzheimer’s are not told of their diagnosis. However, physicians’ responsibility to act ethnically in their practice also comes into play. Often, they may be concerned about a patient’s reaction and want to avoid any emotional distress, which may lead to downplaying the impact of the disease.
While such motivations are understandable, they pose many challenges — both in a legal and ethical context. The early stages of dementia, if recognized early enough, offer a chance for patients to take care of legal or financial matters and discuss medical preferences with their families. This example that helps put matters into perspective is cancer diagnosis: if a patient is diagnosed with an inoperable malignant tumor, physicians cannot simply skip over or downplay that to a patient. Why should dementia be any different? Is it really up to the physician or family to decide what the patient gets to know about their remaining life?
Another dilemma associated with a dementia diagnosis is that of patient independence. One of the most significant topics to stem from this is the patient’s safety at home. Many patients, for valid reasons, pressure their families into letting the patient to live independently at home. However, safety concerns often worry families of dementia patients. As a result, families participate in various efforts to ensure safety and independence for their loved ones.
For instance, there are cases of patients with GPS locators, cameras in the house, and even electronically programmed medication dispensers to ensure timely and safe medicine intake. However, at what point do these efforts interfere with the privacy and dignity of patients? When is it okay for a patient’s families to override their desire to live at home?
Another issue that stems from safety in dementia patients is their resistance to taking medications, especially in the middle stages of dementia.
As a result, many caregivers have resorted to hiding medications in food. This practice, called “covert administration,” is widespread with many arguing that it is necessary for patient well-being. However, others say it is ethically inappropriate as the caregiver is essentially “tricking” the patient into taking medication. Covert administration has proved more manageable and efficient when patients cannot consent to medicines and their power of attorney has already consented to medication use.
The most challenging decisions concern end-of-life care. In this stage, there are many decisions that families need to make as patients are no longer in a sound decision-making state. Families need to have conversations with their loved ones before reaching this stage to know exactly what to do regarding medical treatment. Some decisions include choosing full-code (CPR and ventilator) or DNR (do not resuscitate), feeding tubes, and IVs for hydration and antibiotics, as well as other considerations.
Aging is an arduous life process and one that is often not discussed. Encouraging more awareness around the process can help fight fears and misconceptions and educate those about the ethical dilemmas surrounding it.
~ Saathvika Diviti `25