Known for his “tough guy” demeanor for roles in films like Die Hard and Pulp Fiction, Bruce Willis has provided millions of fans across the world with decades of incredible characters in memorable films. In April 2022, his family announced the 68-year-old icon was living with aphasia, a language disorder caused by damage to the areas of the brain responsible for expression and comprehension. More than losing the ability to speak, aphasia often renders a person no longer capable of reading, writing, or listening to and understanding others. Thus, the news of an aphasia diagnosis and announcement to retire from acting for the physically healthy and successful actor was both shocking and devastating.
By February 2023, Willis’ condition had progressed considerably, and he was diagnosed with frontotemporal dementia, of which aphasia can be a symptom. According to the National Institute on Aging (“NIA”), while rare, frontotemporal dementia most often occurs at a younger age than other forms of dementia. Per the NIA, “roughly 60% of people with frontotemporal dementia are 45 to 64 years old.” Even more cruel is that frontotemporal dementia is a progressive disease with symptoms getting worse over time in which there is currently no cure nor treatments to slow or stop progression.
While cognitive disorders like Alzheimer’s (another type of dementia) are more often a concern for seniors, incapacity can happen to anyone regardless of age. Accidents, mental illness, and medical emergencies can occur quickly and by surprise. Most people only think about estate planning in the context of death, but Bruce Willis’ heartbreaking diagnosis is a poignant reminder that one’s estate plan should encompass incapacity planning.
What is Incapacity, and How Do I Plan for It?
“Incapacity” means a person’s inability to make reasoned decisions regarding one’s financial and personal affairs. Most often, incapacity accompanies a diagnosis of Alzheimer’s, Parkinson’s, or other diseases marked by dementia, but it can also arise in situations resulting from a car accident or a medical complication, like a stroke. Incapacity can have severe effects on the legal, financial, and personal affairs for those affected and their loved ones, especially if incapacity has not been planned for in advance.
Incapacity planning is a critical component of an effective estate plan, as it’s designed to protect a person should they become temporarily or permanently disabled. Incapacity planning addresses questions such as who will manage the assets, care for children, pay for bills, etc. if one is incapacitated. It can also be used to help make decisions if the person owns a business by outlining who will make decisions on the person’s behalf.
Regardless of age or life circumstances, including incapacity planning in an estate plan is important. Scenarios to be included other than death will ensure the person’s wishes are honored should they become incapable of making decisions for themselves or communicating to others. For example, an incapacity plan would include provisions related to the following:
- Palliative care
- Resuscitation efforts (i.e., DNR)
- Surgeries and procedures
- Life support
- Administration of pain relief
An incapacity plan will also ensure family members or loved ones can access bank accounts, tax returns, or speak on the incapacitated person’s behalf in financial and medical settings. In the absence of an incapacity plan, the only option is filing for a conservatorship through probate court – an oftentimes lengthy and expensive process. Conservatorships involve a court-appointed conservator to manage the financial and personal matters of an adult who is unable to manage them on their own as a result of a physical or mental capacity.
In California, there are a few steps an individual that may be affected by incapacity can take to avoid a conservatorship situation:
First, establish an Advance Healthcare Directive. The Advance Healthcare Directive provides individual healthcare instruction on behalf of someone who is incapacitated. An Advance Healthcare Directive will: (1) appoint a person or persons to make health care decisions for someone if and when they lose the capacity to make health care decision (typically called a “health care power of attorney”); and/or (2) provide guidance or instructions for making health care decisions, typically in end-of-life care situations (often called a “living will”). Keep in mind that Advance Healthcare Directives are legal documents providing directions from the person affected by incapacity and are not medical orders.
Accompanying an Advance Healthcare Directive is a document called a POLST form, which is neither an advance directive nor a replacement for an advanced directive, but rather is a helpful document for incapacity planning to communicate patient wishes when appropriately used. In contrast to the Advance Healthcare Directive, a POLST form consists of a set of medical orders that addresses a limited number of critical medical decisions. For instance, it may specify whether a person wants to receive CPR or be put on a ventilator. The form is intended as a complement to advance directives in that it serves as a translational tool and provides assurance that patient wishes will be honored.
Second, establish a Durable Power of Attorney. A Durable Power of Attorney designates someone, referred to as an “agent”, to make financial and legal decisions on the incapacitated person’s behalf. Powers of attorney are flexible and can be written to continue until a certain amount of time has passed, until a certain circumstance occurs (e.g., recovery from a stroke), or even last indefinitely (until death).
Conclusion
Most people do not want to consider their own death and put together an estate plan, let alone contemplate situations in which they might become incapacitated. The reality is that planning for the management of assets and health during periods of incapacity is critical, as at some point or another, almost everyone will need help, no matter how brief, making decisions and managing their affairs. Incapacity is hard on the person diagnosed and heartbreaking for family and loved ones. Proper incapacity planning can ease some of the emotional and financial distress associated with incapacity so all involved can focus on recovery and healing.