Renceh Flojo is a bioengineering major and is a 2022-23 health care ethics intern at the Markkula Center for Applied Ethics. Views are his own.
As the population's median age trends higher and higher with the advancements in medical treatment options and technologies, the prevalence of chronic diseases like cancer, heart disease, diabetes, and, most importantly, Alzheimer’s disease has increased. As a nation, the treatment of these diseases is the leading driver of the nation’s $4.1 trillion in annual health care costs. Although these chronic diseases have equal importance in the clinical space, none of them are as ethically challenging as neurodegenerative diseases like Alzheimer’s Disease.
Alzheimer’s Disease (AD) is a progressive, neurodegenerative disease linked to cognitive changes of memory loss, poor judgment, anxiety, and aggression. This decreased ability to form and recall memories, along with the associated behavioral changes, results in a reduced, if not lost, level of autonomy in such individuals.
According to Beauchamp and Childress’ Respect for Autonomy, the general requirements for autonomy are liberty and agency. Arguably so, AD patients lack a sort of agency as they might not have the intentionality and understanding behind their actions. As caregivers interact with AD patients, upholding their autonomy as best as possible to live according to their identified values is vital. This plays a significant role, especially in end-of-life care decisions, as due to the progressive trend of AD, patients cannot decline or even accept the treatment options they genuinely wish to have. The current standard of care requires AD patients to rely on caregivers, family members, and surrogates to make health care decisions, but that in and of itself runs the threat of paternalism. While there are advanced directives that might mitigate that threat, it currently doesn’t match AD patients' ever-changing cognitive status.
Current Advanced Directive Options
First and foremost, the goal of end-of-life care, especially concerning AD patients, is honoring the person’s wishes. These wishes are usually expressed through advanced directives that specify the type of medical care a person wants to receive once they can no longer make such decisions and who, by proxy, can make it for them. According to the Alzheimer’s Association, they are usually made when the person still has the legal capacity—the level of judgment and decision-making ability needed to sign official documents or make medical and financial decisions. They’re usually made when the initial diagnosis of AD is made. If not, the family (usually a spouse or adult child) must be prepared to make decisions that uphold the patient’s values. Typically this document comes in two flavors: written instructional directives (such as “living wills”) or an appointment of a durable power of attorney (DPOA) for health care, authorized to make medical decisions on behalf of incapacitated patients. While both aim to respect the patient's autonomy filling for them, these documents have limitations.
The most prevalent cases where they fail or even see their limitations come when the AD patient may not fully understand treatment options and recognize the consequences of such choices for the future. They may also change their minds and forget to inform others, and with the quickly evolving clinical scene, advanced directives aren’t able to adapt as fast. Advanced directives are often too vague to guide clinical decisions through general statements of rejecting “heroic treatments,” according to HealthinAging. Additionally, new medical therapies may have been developed since the advanced directive was made, resulting in them not being provided the best possible outcomes for the patient.
Specialized Advanced Directives
To help mitigate some of the unique aspects of end-of-life care for AD patients, especially in the terminal stages of the disease, specialized advanced directives have been designed for AD patients. For example, patients are allowed to express preferences for medical care, feeding, and location of care depending on the stage of dementia in the Dartmouth Dementia Directive. It further includes specifications on whether to follow past wishes when current expressions may differ and how the DPOA should evaluate potential contradictions to a patient’s values as the disease progresses. While this may run into a problem similar to traditional advanced directives, it aims to solve the specific fine points unique to AD end-of-life care. These tailored advanced directives currently don’t replace the traditional ones; instead, they are used to bolster the preservation of autonomy they aim to achieve.
Need for Change
While there are currently several studies researching the effectiveness of specific AD advanced directives, there needs to be nationwide consensus on a unified AD-specific advanced directive that AD patients can elect to use to replace a traditional advanced directive or at least use in conjunction. This ideally would include the traditional topics that are addressed. Still, they need to be brief and accessible enough to include changes in cognition and the goals of care that patients would want as dementia progresses. In addition, as opposed to the “legal transactional approach” that's common to traditional advanced directives, the more recent “communications approach” needs to be the basis for AD-specific advanced directives as it enables a rechecking of values at specific disease benchmarks or regular intervals. For example, studies are currently being done on whether this model, as seen in the Standford letter project, where people indicate what matters most to them, who matters most to them and a bucket list of their future goals, can replace traditional advanced directives. This new development would require the input from patients, clinicians, families, and experts in the field but remain flexible enough that it can serve as a template for people to cater to their exact needs.
Overall, a gap needs to be filled in end-of-life care with a unified broad advanced directive for AD patients that continue to maintain the autonomy they aim to upkeep.