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Dignity, Risk and Choice

Education, resources and practice considerations in older adult care

Basics

Lady with Cone. by Tom Driggers/CC BY

Being able to make one’s own decisions is an example of personal autonomy. Personal autonomy is considered a basic human right. Some decisions may lead to risks that others may be uncomfortable with. 

Participants from the Is the Patient Safe to Go Home? workshops identified the need to better understand autonomy, risk taking, and capacity within the complex scenarios health care professionals often find themselves in. Issues around capacity or decision-making ability occur frequently when working with older adults who have dementia or other conditions that impact judgment and cognition.

This section provides considerations, information, and guidance on how to preserve a person’s decision-making autonomy as much as possible.

Consider
  • Do we have an understanding of capacity, informed choice, and basic human rights around decision making with older adults?
  • In what circumstances do we tend to question the capacity of older adults?
  • Can older adults who lack capacity for health care, personal care, or financial decisions live in their homes in the community?
  • Can older adults be discharged home from hospital if they lack capacity for health care decisions?
  • Are there system or organizational pressures that could lead us to question someone’s capacity?

Capacity is typically described as a person being able to:

  • Understand the information relevant to making the decision at hand AND
  • Appreciate that their decisions or indecision may impact themselves or others.

Currently, Canadian capacity laws are mandated by provincial legislation. Canadian, U.S., U.K. and Australian mental capacity acts and laws all have four principles in common. These principles demonstrate a similar understanding of the issue of decision making for older adults and capture the concept of the Dignity of Risk:

  • Adults have the right to make their own decisions, and to be assumed to have capacity to do so unless shown otherwise. Capacity should be viewed as decision-specific.
  • Adults should be offered all reasonable support and assistance in making and following through on decisions before others step in to make decisions for them.
  • Adults have the right to make decisions that others feel are unwise or disagree with, the right to have a different tolerance for the risks associated with a decision, and the right to fail after making a decision.
  • When others are involved in decision making with the person, any decisions must be made with the person’s best interest and preferences at the forefront, and must infringe the least amount possible upon that person's basic rights and freedoms.

Adapted from:
Mental Capacity Act UK 2005 Principles
Queensland Capacity Assessment Guidelines 2020
New South Wales Government: Capacity Toolkit
NS Personal Directives Regulations

Principles & Ethical Considerations of Capacity

It is important to understand the different elements when considering a person’s capacity for any given decision, in order to avoid making generalizations or assumptions, or removing decision making rights too soon or unnecessarily. The four tabs are adapted (with permission) from the Guidelines for Conducting Assessments of Capacity from the Ontario Ministry of the Attorney (2005).

  • Risk cannot be managed by finding someone as incapable unless there is strong and obvious evidence of inability to understand and appreciate a given decision.
  • Intervening to protect an individual from potential harm may be less important than respecting their right to risk and self-determination.
Consider
  • A person who is deemed to lack capacity for personal care decisions in hospital, may still practice the right to return to their home, if this decision reflects their wishes, values, and preferences.
  • Capacity must be assumed in every situation, with every decision. Not all people with a certain disease lack capacity for all decisions.
Consider
  • People with dementia will experience impairment in decision-making ability as the disease progresses. But not all people with dementia lack capacity for all decisions.
  • Having cognitive impairment does not mean it is impossible to make rational decisions within daily life.
  • It is important to remember that people may consciously choose a course of action fully knowing and accepting potential risks.
  • People make decisions for different reasons. What may appear to be financial or medication mismanagement could in fact be the outcome of an individual making choices that are consistent with reasoning based on personal values, preferences, and beliefs. The outcome should be viewed as less important to assess than the individual’s meaningful line of reasoning. 
Consider
  • John has mild-moderate dementia and often goes 2-3 weeks without picking up his medications from the pharmacy. It may be easy to assume that John is forgetting or doesn't know how to pick up his medications. With further exploration to try understanding John’s situation, it may be determined that his preference is to spend his remaining monthly budget on favourite magazines rather than on his medication. John is choosing to forego his medication until he has a new financial deposit at the first of the month.
  • A person’s rights should not be removed from decisional areas in which they remain capable.
  • An individual may be assessed to lack capacity for health care decisions, but may still be capable of deciding what they want to eat, where to live, their personal hygiene, or what to wear.
  • When a person’s capacity is in question, the first question should always be, Capacity for what?
Consider
  • Rose has moderate-severe dementia. Her daughter is Power of Attorney for financial decision-making. Rose was recently assessed to lack capacity for health care decisions.
    • How might health care professionals consider that Rose may still be able to choose or be included with decisions around clothing, self care, what she wants to eat, and where she wants to live?
    • How might health care professionals further educate Rose's daughter?

Additional Considerations

Capacity for any decision may fluctuate.

This can be dependent on a delirium, pain, fatigue, medications, stress, environment, times of day, etc.

Consider
  • How might health care professionals set people up for success as much as possible when having conversations about decision making?

Decisions vary in complexity with line of reasoning, relevant information, people affected and potential outcomes.

Consider
  • A person may lack capacity to manage a complex financial decision such as organizing yearly taxes or making investments in the stock market, but they may still be able to be involved in or make decisions regarding their monthly budget.

Not all decisions are based on rationale and logical reasoning.

Some decisions may be made with a values or preference-based reasoning process. A person’s ability to state values and preferences is independent and separate from state/level of cognition. They could be experiencing significant cognitive impairment but still be included in decision making and choices related to their quality of life, or may still have cognitive abilities that reflect how they derive meaning in their lives.

Consider
  • When people with dementia lack insight into their care needs and the disease process, but still tell us their values and wishes are to return or stay home for example, how may we still enable them to fulfill their values and preferences for as long as possible, acknowledging and mitigating the risks involved?
  • Why do health care professionals tend to say “If they have capacity, then they can do what they want”? What if they don’t have capacity (for a given decision) – can we still work with them and caregivers involved to preserve their rights to fulfill their values and preferences?
  • What may be the limitations of capacity assessments having a large focus on reasoning related to logic and rationale when making decisions versus the influence of personal values and preferences when making decisions?
Readings