What is Decision Making Capacity? Why Does it Matter?

Part of advance planning involves thinking about when different pieces of paperwork come into effect. Often you don’t want this to happen when the person named in them is doing well, but instead when the person can no longer advocate for their own wishes.

The most common way this is achieved is through the idea of decision making capacity. This refers to whether a person is able to make decisions, specifically rational decisions that align with their values. Various advance planning documents may come into effect when someone uses this capacity, including Living Wills, some PoAs, and the combined document Five Wishes.

It’s a simple enough idea – when someone can no longer make decisions for themselves, systems need to be in place to ensure their wishes are still followed. Sometimes things truly are this straightforward, like when someone is in a coma. Other times, things are much more complex.

These complexities impact what healthcare proxies are able to do and how the senior’s wishes are followed.

Today, we’re taking a deep dive into the idea of capacity. We’ll show you what the term means, how it relates to competence, and areas where problems can arise. Through these discussions, we’ll highlight ways to ensure everything goes smoothly. 

What is Capacity?

At its simplest, capacity can be defined as the legal ability to do something. When we talk about it in the context of advance planning, we’re referring to decision making capacity, which is a person’s ability to make decisions for themselves.

Specifically, having decision making capacity means that a person understands the information they’re being given, they can weigh it up, and they can communicate their decision.

Capacity is often poorly defined in paperwork, like how the standard form in Arizona states: “This power of attorney is effective on my inability to make or communicate health care decisions”. This statement provides no definition of what the inability to make or communicate healthcare decisions means in practice.

Why Does Capacity Matter?

Capacity is important for a host of reasons, including the following:

• It determines when some documents come into effect.
• A lack of capacity may invalidate some documents (like a PoA that was signed when the principal lacked capacity).
• It’s more complex than it first appears. Even medical professionals often have false assumptions about some aspects of capacity.
• Understanding capacity can help you better advocate for your loved one.
• Differences in capacity and assessment tools can influence whether a person is considered to have capacity or not.
• You may choose to include more specific phrasing in your Power of Attorney document to ensure it comes into effect when you expect it to.

How Capacity is Assessed

Assessments of decision making capacity are shockingly inconsistent. There’s no single assessment tool and healthcare professionals mightn’t even use a tool at all. 

The most common aspect is the consideration of four abilities, which are as follows:

• Understanding. The ability to receive, process, and understand the information provided.
• Appreciation. The ability to understand the situation at hand and possible consequences (like the risks of a surgical procedure and the potential benefits).
• Reasoning. Rationally processing information. This is often tested by asking patients to explain the factors that went into the decision, along with how they weighed them.
• Expression. That the patient is able to express their choice.

Crucially, these abilities all focus on the decision making process – not the actual decision that people make. This means people can change their minds or make ‘wrong’ decisions, as long as the four factors are in place.

There is some criticism around this model in that it focuses strongly on cognitive perspectives and is limited in how it considers values and instinct. Some people may not be able to explain rational reasons, even though their decisions are authentic and consistent. When this is the case, family members may play a crucial role in identifying which decisions are in character and consistent for the senior and which are not.

Expert Opinions

Generally, an individual’s primary care physician is the best person to assess their decision making capacity, as they have a relationship with the patient and understand their history. As a result, they’re well positioned to identify changes in behavior or cognition and may have some understanding of the patient’s values.

Still, there are exceptions… like if the patient has changed healthcare providers recently or if there is some concern about bias.

Additionally, primary care clinicians may sometimes need input from an expert. For example, someone with a personality disorder may regularly make poor or unexpected decisions. This makes it more difficult to spot changes in decision making ability. A physician may need to work with a specialist to make a determination.

Formal Assessment Tools

Capacity assessment can often be completed simply from observations and conversations. However, formal assessment tools may sometimes be used as well, especially if capacity isn’t obvious, if there is disagreement within the family, or if there’s the risk of legal issues later on.

There is no single recognized assessment tool and the available tools all have their limits. For that matter, there are even differences in opinion about what capacity means in practice. This is partly related to the fact that capacity is strongly related to the person and situation at hand, which makes it difficult to create any type of consistent validated tool.

When Capacity is Assessed

Generally, a person is assumed to have capacity unless there is a significant reason to consider otherwise.

Indications that capacity might be compromised include:

• A surprising decision, such as refusing a low risk and high reward treatment or suddenly refusing a treatment that had previously been acceptable.
• A decision that is out of character, like a senior refusing minor surgery, even though they have had no reservations about surgery in the past.
• The person has a medical condition or is taking medication that is known to compromise decision making ability. For example, someone with dementia may have their decision making regularly assessed because of how dementia can influence cognition.
• Family members are concerned about a decision or feel that the patient is acting out of character.
• There are concerns that the patient is being manipulated or coerced in some way, like by a controlling family member or a new romantic partner.

Even with such clues a person’s limited capacity can be easily missed. Family members can play a crucial role here, as they can spot changes to behavior and inconsistencies that might otherwise be missed.

Capacity vs Competence

The terms capacity and competence both relate to decision-making ability, but they’re not interchangeable.

Capacity is the one we’re focusing on in this post and is often assessed by a person’s primary care physician. It might be determined informally or the physician may rely on some type of assessment tool.

In contrast, competency is a legal concept that’s determined in a court of law, where a person who is ruled as incompetent may be appointed a guardian to make decisions for them.

The legal process of determining competency is expensive and time-consuming, so it is usually only used when the need is significant. Pursuing this is most relevant when the individual is considerably impaired, is placing themselves at risk, and isn’t likely to get better.

Things to Consider About Capacity

It’s tempting to say that a person either has the capacity to make their own decisions or they don’t. Yet, decision making isn’t that simple.

Capacity Can Vary Over Time

Even without health issues, our ability to make decisions naturally varies over time. Common factors include:

• Emotional state
• Stress
• Hormone levels
• Exhaustion
• Medications
• Cognitive impairment
• Mental health disorders
• Substance use

Because of these issues, a person’s capacity may be lower than normal right when they need to be making serious healthcare decisions. For example, someone who is exhausted, stressed, and in pain is likely to struggle with decisions, especially decisions that are complex or have long-term implications.

As a result, some decisions may need to wait until the person’s capacity has improved. It may also be necessary to test capacity regularly for some individuals. 

Capacity Can Vary Between Decisions

Capacity also differs depending on the decision. For example:

• Most seniors can still decide who visits them and who doesn’t, even if they can no longer make medical decisions.
• Some people may struggle with complex medical decisions, especially those that have complicated odds and long-term outcomes. Yet, they may have no problems with straightforward medical decisions and non-medical decisions.
• A person may still have the capacity for some types of paperwork, even if they can no longer make medical decisions.

Generally, more capacity is required for complex decisions and those with grave or long-term consequences.

Such differences mean that capacity should ideally be considered for each individual decision. Of course, doing so isn’t practical and would make medical processes take so much longer. So, it’s more common to look for signs that capacity might be lacking.

A Person May Not Recognize Their Changes

Changes to cognition aren’t always obvious to the person experiencing them. Dementia is an example of this, where the very nature of the condition can prevent the individual from recognizing decreases in their understanding.

So, in some cases, a person might still feel like they’re making decisions rationally in the same way they were before – even though this isn’t the case at all.

A Person’s Capacity Isn’t Always What You Expect

Decision making capacity can be related to health conditions, like dementia, but there are still differences between individuals. Some people retain decision making capacity for longer than you might expect, while others may lose it sooner.

For example, a person with dementia who does not recognize the time or where they are may still meet the criteria for decision making capacity. The same is true for some people with reality-distorting conditions like schizophrenia.

The reverse can be true too, where a person appears functional in most aspects of their life, but does not have the ability to make sound decisions. This might happen for someone with significant cognitive impairment who has learned tricks to hide their challenges from other people. 

Capacity Is Sometimes Difficult to Assess

Despite their usefulness, assessment tools aren’t always enough to determine a person’s level of capacity.

Here are a few complexities to consider:

• Some people intentionally lie to hide symptoms of diminished capacity. Dementia caregivers regularly talk about how the person with dementia appears much more competent with healthcare professionals than they do at home.
• Some people learn the expected answers and give these. So, they may be able to justify the decision to other people, even if the answers they give aren’t at all related to why they made the decision.
• A person might make ‘bad’ decisions for reasons that kind of make sense. Assessments of decision making are meant to just focus on the process, not whether the decision is good or bad. Even so, a series of poor decisions with debatable reasons might be a sign of lack of capacity for some physicians.
• Personality disorders and mental illnesses make it more difficult to assess decision making. For example, narcissists regularly lie to those around them, making it hard to know their true thoughts and motivations.    

The family’s perspectives can be valuable in cases like these, helping doctors spot inconsistencies and signs that something isn’t right. Still, respect for autonomy means that physicians are unlikely to rule that someone lacks capacity unless they’re certain.

What Does This All Mean Practically?

There are a few very important practical implications of the complications with capacity. 

Many People Can Still Make Some Decisions

Even when a PoA is enacted because of capacity loss, many people will still be able to make some decisions or express their preferences.

It’s worth encouraging as much decision making and expression as possible, as doing so helps people feel more in control of their lives. In a separate post, we discuss ways to improve a person’s ability to make decisions.

You May Need to Advocate

Healthcare staff are often busy and have many patients to see. You also know your loved one better, so you’re in the best position to notice changes that might indicate an issue with decision making capacity.

Capacity May Be Contested

The lack of definitive definitions and tests for capacity means that people may disagree about a senior’s capacity.

This is often seen in families, where the caregiver sibling clearly sees diminished capacity in their aging parent, while other family members aren’t close enough to see many symptoms at all.

The non-caregiver family members might argue against anything that says the senior lacks capacity. This could even mean a legal case to determine the senior’s decision making ability. 

Advance Directives Mightn’t Become Effective When You Expect

Because capacity isn’t straightforward, the timing for a PoA mightn’t be what you expect either. You may sometimes need to wait for the senior’s physician to recognize their incapacity, even if the senior is putting themselves in harm’s way in the meantime.

Collaborative Decision Making is Powerful

Collaborative decision making is one of the best ways to get around issues in determining capacity. Here, you’re working with the senior in making decisions and resolving problems, which helps to compensate for any cognitive challenges.

For this to work, you need to develop a compassionate and collaborative approach with the senior. This involves respecting their autonomy and their decisions, even if you don’t agree with all the decisions they make.

If you’re on their side and working to get the outcomes they want, they’ll be more responsive to your advice and perspectives.

For example, let’s say a senior doesn’t want to move to assisted living, but also can’t live on their own safely. You might work with them to determine the things that matter most (like autonomy) and how this can be achieved with the available resources.

What You Can Do For Your Own Plans

Finally, let’s think ahead – to your own advance planning documents.

One way to avoid the complexities of capacity is to make your PoA more specific. For example, you could say that two different physicians need to agree that you lack capacity or that you need to get a certain score on a particular test.

You could possibly use other criteria instead, like the PoA comes into effect when you are in assisted living or in a nursing home.

You’ll need to consult a lawyer for these types of changes, as the laws for advance planning documents vary between states. A lawyer can ensure that your documents meet your needs and will still be recognized.

Final Thoughts

We’ve spent a long time talking about capacity because there are so many angles to consider. Yet, most advance planning documents provide very little information about what capacity means.

Will you need all this information? Probably not. Many people won’t run into any of these complexities at all. Even so, it’s best to have the information on hand. This way you know what could happen and are prepared early, just in case there are issues.