The Decision-Making Capacity Assessment Model Toolkit honours patients first
Dr. Jasneet Parmar spent more than a decade developing the Decision-Making Capacity Assessment Model Toolkit (DMCA). This revolutionary resource, which was published online in 2019, is a practical, evidence-based guide that helps health-care workers document and assess, diligently and compassionately, a person’s ability to make decisions for themselves. The toolkit’s primary goal is to preserve autonomy, mitigate risk and assess decision-making capacity when it truly benefits the adult. For example, in terms of acknowledging the adult’s decision-making capacity regarding where to live, the goal is to honour their preference, which is often to stay in their home for as long as possible.
The DMCA has been endorsed by Alberta Health Services and Covenant Health, the largest Catholic health-care provider in Canada. It has been adopted at hospitals, medical clinics, nursing homes and supportive living communities across Alberta.
“This is a clinical process based on legal and ethical considerations,” says Parmar, an associate professor at the University of Alberta, AHS Medical Lead, Homecare and Transition, and the former Medical Director at Covenant Health. “It has really clarified what we as physicians and other disciplines need to undertake, and it protects the public.”
A new process
Parmar began developing the DMCA for Covenant’s Network of Excellence in Seniors’ Health and Wellness in 2005. It was a collaborative effort with several key disciplines and stakeholders at the University of Alberta, and was created from years of consultation with a broad spectrum of care workers across the province. Back then, in order to determine if someone was incapable of making decisions for themselves, all a physician was required to do was fill out a simple one-page form. Then, if a person is legally declared “incapable,” their ability to make decisions for themselves is taken away, and they can be moved from their homes to assisted living, often against their wishes.
The process seemed highly unethical to Parmar. From the consultations, it came to light that physicians, who were expected to provide these assessments, had no clinical process to follow, and their decisions could lead to the appointment of a guardian or trustee or the enactment of a personal directive.
“Other issues came to light, such as recognizing that people living with complicated medical conditions like dementia were at particular risk, as their decision-making capacity could be judged on hearsay or a test such as a MMSE (mini-mental status examination). There were system pressures to get these capacity assessments done to move patients to long-term care,” Parmar says. “There were times when the personal directive would be established with the intent to enact it as soon as possible to get decisions made. As we explored these issues, a social worker reminded us that declaring someone lacking capacity is changing their legal status in society.”
Having the ability to declare someone incapable of making decisions for themselves based on a short clinical visit and the word of a family member didn’t sit well with Parmar. She set out to create a more compassionate clinical process that was people-centred and honoured the wants, needs, and desires of the person first. The DMCA model operates under the principles that “all adults are presumed capable of making their own decisions until the contrary is demonstrated” and that “the onus is on the assessor to demonstrate a lack of capacity, not on the patient or client to demonstrate capacity.”
“With this model, we always look at ifa capacity interview is even warranted,” Parmar says. “The DMC assessment process needs to be followed before an adult is subjected to a DMC interview.”
Parmar says the DMCA includes Capacity Interview and Capacity Assessment Process Worksheets that start with the triggers of why the physician is being asked to assess capacity. The worksheets help them determine if the person is making decisions that will result in significant harm to themselves or others. The DMCA process then thoroughly evaluates the person’s decision-making capacity across seven domains (social, health care, legal, associates, accommodation, financial & estate, and education & work).
Parmar says one trigger that comes up frequently is someone’s ability to manage their finances. She says families often ask for someone’s capacity be assessed because they are worried about the financial choices their family member is making. But, sometimes, through the DMCA process, it is revealed that the person in question fully understands the consequences of their decisions.
“We should always try to honour people’s values. We sometimes get very protective and want to move them to a safe setting to avoid risk. However, people may choose to live at risk,” Parmar says. “A poor choice does not equate to lack of decision-making capacity. Everybody makes poorchoices from time to time.”
Under the DMCA process, declaring a person incapable is only done after proper screening, including cognitive and functional testing, consultation with care team members, and when less intrusive and restrictive interventions fail to reduce risks. Parmar says establishing an enduring power of attorney and personal directive, covered under the Personal Directive Act in Alberta, while someone still has capacity is very beneficial. These legal declarations mean that the person’s values are understood by everyone involved in their care. In the event they lose capacity, enduring power of attorney and personal directive ensure they still have an active voice in determining any future decisions.
“You should absolutely establish these while the person still has capacity,” Parmar says. “It’s quite a process to apply for guardianship or trusteeship after the person is declared incapable. It can adda lot of stress for the families involved.”
The DMCA not only determines if someone is incapable of making decisions, it works to assess their financial picture, which is crucial in creating a plan for assisted living, should it be required. It can also help families better plan for safeguarding the person’s finances, automating bill payments, or determining if they need to appoint a guardian, establish a trusteeship or instruct an enduring power of attorney.
“It’s very important because you cannot do a capacity assessment without knowing what that person’s finances look like and what legal agreements are already in place,” Parmar says. “And if the person is taking risks and has capacity, then we need to support the adult and their family to help solve these problems. Trying to declare adults who are making poor choices as lacking capacity is not the solution in such situations.”
DMCA’s Basic Overview of Steps
1 | Pre-assessment: The adult’s attending team determines if there are significant triggers that merit an assessment. This is an action or inaction that could potentially put the adult at risk, such as failing to pay bills or regularly getting lost when taking a walk.
2 | The team will determine if the patient is medically and psychologically stable before performing cognitive and functional tests.
3 | If an adult’s accommodation is in question, the health-care team, family and patient will brainstorm ways to continue to keep the adult safe in their home. This could include using GPS devices when taking a walk.
4 | Only if the problem(s) cannot be resolved and the adult remains at unacceptable risk will the psychologist or a DCA (designated-capacity assessor) proceed with the formal capacity interview. [ ]