Practice Management Alert

Patient engagement gets trickier when dementia is involved. Here’s what to do.

For patients with dementia, deciding who makes a medical decision can be more difficult than the actual decision. As the dementia progresses, determining a patient’s capacity becomes increasingly difficult. As rates of dementia in the population increase, administrators and clinicians alike must understand who gets to make important medical decisions for these patients so that they can deliver the best possible care.

Tip: Below, we cover general principles and best practices, but some states have specific laws about how health care providers must handle patients with dementia.

Determining Capacity

Determining capacity is the first step in decision-making. In 1982, a special presidential commission outlined three prerequisites for decision-making capacity:

1) The individual must have a set of values and goals that are relevant to the decision.
2) The individual must have the ability to communicate their wishes and to interpret information.
3) The individual must be able to reason and deliberate and to show their understanding of the situational context.

It’s important to remember that “capacity” always refers to a specific decision-making ability. An individual might not have the capacity to manage their 401(k), but still has the capacity to make value judgments about their care and daily routine.

Capacity is also person-specific. It must be measured relative to that individual’s unique habits and personality, not an arbitrary universal scale.

While demanding, these guidelines protect your practice and your patients’ rights. They take a broad ambiguous concept, like cognitive functioning, and make a yes-or-no question: Does this patient have the capacity to make this decision or does she not?

What Happens When Capacity Disappears?

When a patient doesn’t have capacity to make a decision, surrogate decision-making comes in. There are four kinds of surrogate decision-making options: Directed, Delegated, Devolved, and Displaced.

Directed. This decision-making stems directly from the individual and the instructions given when they retained capacity to make a decision. Advance directives, living wills, and Physician Orders for Life-Sustaining Treatment (POLST) documents are all examples of directed decision-making. Directed decision-making has the highest priority, because the instructions reflect the explicit wishes of the individual.

Delegated. An individual chooses another individual to make some or all decisions for them once they lose capacity. If this agent has durable power, the agent continues to make decisions even when the individual loses capacity to make the decision. Durable power of attorney (DPA) for health or financial decisions is a common form of delegated decision-making.

Devolved. If an individual did not leave instructions, either directed or delegated, then decision-making authority follows a predetermined hierarchy. In Louisiana, for example, the hierarchy is as follows:

1) The patient’s spouse, not judicially separated.
2) An adult child of the patient.
3) The parents of the patient.
4) The patient’s sibling.
5) The patient’s other ascendants or descendants.

Displaced. If no one from that hierarchy is available or competent, a court can appoint a guardian or conservator to act in the patient’s best interests. Each state has their own regulations and systems for guardianship. Generally, guardians are required to document all decisions and report back to the court in order to ensure the guardian is acting in the individual’s best interests.

Want more info on capacity decisions and dementia? Read Dr. Ethel L. Mitty’s article “Decision-Making andDementia” from the Alzheimer’s Association at https://www.alz.org/stl/documents/decision_making_capacity.pdf

To find the specific guidelines in your state, read the American Bar Association’s “Default Surrogate Consent Statutes” chart, which provides summaries and links to each state’s laws.

http://www.americanbar.org/content/dam/aba/administrative/law_aging/2014_default_surrogate_consent_statutes.authcheckdam.pdf