Advance Care Planning in Dementia

PDSA Cont'd

Resources

The Dicussion

STUDY. Pre- and post-test data collected by social workers:

Measure knowledge of dementia and disease trajectories

Measure current knowledge of ACP processes and best practices

Current number of patients with dementia diagnosis

ACP conversation status

Pre-test: Collected before webinar presentation

Post-test: collected at 3 months and 12 months following webinar + interviews with a small sample of patients about the ACP process and information

received and needed from their GP at 3 months

ACT. Integrating what was learned from the pre- and post-tests and interview processes to alter the education tool.

ACP in Dementia Care

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Why GPs

PLAN: Webinar is designed to

Improve GP’s understanding of what ACP entails

Increase comfort with starting and sustaining ACP conversations

Increase number of conversations had

Provide clear prognostic information to patients

DO. Webinar is created, advertised and delivered.

ACP for people with dementia has been

argued to be more effective as a process of discussion rather than simply completion of a form (Sinclair et al., 2015).

Re-initiate the discussion at turning points in the disease trajectory (Van-Soest Poortvliet et al., 2015).

Define Advance Care Planning in

the Context of Dementia Care

- Loss of decisional capacity (and the ability to foresee this loss)

- Likelihood of physical health issues after cognition declines

- Dementia is a terminal diagnosis

- Patients with dementia are more likely to experience aggressive interventions at EOL (Harris, 2007)

We will provide locally relevant resources that

will be helpful in discussions with patients

This section could be adapted to make the webinar relevant in other geographic areas

In Ontario, references from the Ministry of the Attorney General for substitute decision maker and Canadian Hospice Palliative Care Association ACP Workbook

PDSA

A key facilitator to ACP is a dedicated professional

available to educate both families and health professionals about ACP which can help promote ACP development and improve outcomes (Dening et al., 2011).

Physicians will likely see the patient more than other health professionals in early stages (Cavalieri et al., 2002).

Medical ethics highlights the importance of autonomous decision making (Cavalieri et al., 2002).

Barriers cont'd

Why Social Workers Cont'd

Why Social Workers?

Social workers are skilled in “truth telling” and “breaking bad news” in a sensitive manner and therefore do no shy away from difficult conversations (Glajchen & Gerbino, 2016)

Social workers are adept at, and mindful of the cultural parameters that influence the choices surrounding end-of-life care (Glajchen & Gerbino, 2016)

Social workers have a strong belief in the responsibility of health professionals to initiate discussions of end-of-life care and are uniquely qualified to improve communication for health partners, patients, and care partners (Glajchen & Gerbino, 2016)

Our Project

Many GP’s also lack knowledge of the treatment options available to persons with dementia when they reach the end-of-life phase (Vlemink et al., 2014)

Some GP’s fail to see the relevance or value of ACP for dementia due to future loss of capacity and inability to confirm previously planned decisions (Vlemink et al., 2014; Cavelieri, 2002)

We hope to implement a social work

led educational session targeted at General Practitioners and Nurse Practitioners in the form of a webinar

The webinar will be accessible and concise, as we understand GPs have limited time

Conversations surrounding end-of-life

issues are emotionally charged - Social workers are trained to encourage conversation that are mindful of, and “start where the client is at” (Shaeffer, n.d.; Glajchen & Gerbino, 2016)

Social workers are skilled in ‘planting seeds’ at different transition points that encourage consideration of ACP (Shaeffer, n.d.)

Social workers are experts at implementing communication as an ongoing, multidimensional process rather than a one-time event (Shaeffer, n.d.)

Barriers cont'd

Patients and Families

Patients and families are often unaware of the meaning of a diagnosis of dementia or the prognosis of the illness making it difficult to initiate or engage in meaningful discussions regarding ACP (Vleminck et al., 2014; Dickinson et al., 2013)

Communicating a diagnosis and prognosis is a vital element in informing patients of treatment and end-of-life care choices (Vleminck et al., 2014)

Barriers cont'd

Timing

Who is Best to Have this Conversation?

Many patients and family members do not feel they receive sufficient information from health care providers on the implications of a diagnosis of dementia (Dickinson et al., 2013)

This lack of preparedness on what to expect in the future prevents many patients and caregivers from making appropriate plans or engaging in discussions of ACP (Dickinson et al., 2013)

Background

Primary care physicians are ideal to engage patients and caregivers due to their typically long-standing relationship with the patient, their consistent and regular contact with the patient, and their medical ethics that promote autonomous decision making (Cavelieri et al., 2002)

However, as we know, GP’s are ill-prepared to have these conversations….

Need to respect individual choices in

regards to timing of ACP (Sinclair et al., 2015)

Soon after diagnosis, but not too soon (Robinson et al., 2013)

Discussion may need to extend over a period of time (Sinclair et al., 2015)

Building a relationship with the patient, and continuous of evaluation of their emotional preparedness, are key to determing when ACP is appropriate on an individual basis

Dementia is a progressive life limiting illness with increasing prevalence and complex needs (Harris, 2007)

ACP is especially important for persons living with dementia, as the disease will result in a gradual loss of cognitive ability and decision-making capacity (Ampe, 2014; Van der Steen et al., 2013), with a median length of survival from diagnosis of 8 years (Harris, 2007)

People with dementia have been shown to have palliative care needs equal to those of cancer patients, yet ACP for persons with dementia remains considerably lower than for persons with cancer (Harris, 2007)

Barriers Cont'd

Timing

Barriers to ACP in Dementia

General Practitioners (GPs)

There is a lack of consensus on when is the best time to initiate conversations of ACP following a diagnosis of dementia (Vleminck et al., 2014)

It is generally accepted by patients and practitioners that the point of diagnosis is too early and the advanced stage of dementia is too late, but the ‘right time’ remains unclear (Dickinson et al., 2013; Robinson et al., 2013; Sinclair et al., 2015)

Unlike in cancer, many physicians don’t understand that dementia is a terminal diagnosis

This is, in part, due to the fact that the progression of dementia is focused on cognitive function rather than life expectancy (Vlemink et al., 2014; Hertogh, 2006)

“Do you die from dementia?” (Male GP, 58 years old)

GP’s consider it difficult, and struggle to know how to initiate conversations with persons diagnosed with dementia and fear instilling anxiety or depression by explaining the expected deterioration of their mental capacity (Vlemink et al., 2014; Cavelieri, 2002)

Promising Strategies Cont'd

Barriers Cont'd

Trajectory of Illness

Unlike illnesses such as cancer that follow a slow initial decline followed by more rapid decline at end-of-life, dementia is typically a prolonged and progressive disability without a predictable or easily identifiable terminal phase – which is usually too late for those living with dementia (Harris, 2007; Vleminck et al., 2014)

The trajectory of dementia is less predictable than for other illnesses and therefore, there are no key moments for initiating ACP (Vleminck et al., 2014; Van Soest-Poortvilet et al., 2015)

Promising Strategies

ACP for people with dementia is most

effective as a discussion, or series of discussions rather than a completion form (Sinclair et al., 2015) This leads to greater uptake and makes EOL care more compliant with patients’ wishes

Discussions of ACP need to culturally sensitive and inclusive of key decision making partners (Sinclair et al., 2015; Yan Tray et al., 2015)

Experiential skills building communication training has been shown to improve clinicians’ skills in end of life communication for cancer (Vleminck et al., 2014)

Initiating conversations over a number of sessions have been show to improve uptake in ACP, but must take place while the person with dementia is still able to make their wishes known (Van der Steen et al., 2013; Sinclair et al., 2015)

Advance Care Planning in Dementia