Promoting Self-determination for Institutionalized Older People Without Decision-making Capacity: Advance Care Planning by Proxy
Condition: Advanced Dementia; Loss of Medical Decision Making Capacity
MeSH terms: Dementia
Study type: Interventional

Summary: 
      This study aims to test the acceptability and feasibility of an advance care planning (ACP)
      intervention which has been developed to be used with the health care proxies of residential
      aged care facility (RACF) residents who no longer have decision making capacity for medical
      decisions. The intervention involves two discussions that are facilitated by a trained health
      professional. The first discussion aims to discuss the resident's life story, values,
      previous medical treatments and experiences with illness and death and whether or not they
      have previously documented their wishes for future care. The second discussion also involves
      the treating physician and aims to document anticipatory decisions for emergency situations.
      Follow-up discussions after 12 months or any change in situation will be conducted.
    

Detailed description: 
      Patient-centered care involves treating patients in the way that is the most aligned with
      their values and their self-determination. This is the aim of Advance Care Planning (ACP), a
      communication-based complex intervention. ACP involves accompanied reflection about one's
      values, anticipation of potential health problems in future states of impaired
      decision-making capacity, consideration of a range of treatment and care options,
      anticipatory decision making and the documentation and communication of these decisions to
      family members and health care professionals. This process ensures that a person's
      self-determination is respected even when she is no longer able to make health care
      decisions. ACP programs are well established in the English-speaking world and are currently
      being developed across Asia and Europe.

      Participation in ACP requires decision-making capacity. Yet, many people lose this capacity
      before having formally expressed their care preferences. In these cases, their health care
      proxies, families and health professionals are called upon to make decisions on their behalf,
      based on what they believe the person would have wanted (presumed will). This is problematic
      and distressing for both family members and health professionals. The fact that many people
      do not participate in ACP or complete advanced directives, along with an increasing
      prevalence of neuro-degenerative diseases entailing a loss of decision-making capacity, means
      that growing numbers of people are likely to require others to make medical decisions on
      their behalf.

      The investigator's exploratory research, confirmed by the literature, highlights an urgent
      unmet need for comprehensive and systematic interventions to assist in promoting
      self-determination of older people who lack decision making capacity. ACP by proxy (ACP-bp)
      has been suggested as a model to help proxies of incapacitated patients plan ahead and
      prepare for future care decisions. However, this model has never been specifically developed
      nor tested. This is why the investigators have developed a specific model of ACP-bp and aim
      to test it in a pilot study among proxies of residential aged care facility (RACF) residents
      who lack decision making capacity, primarily due to advanced dementia.

      The investigators aim to test the acceptability and feasibility of this intervention and the
      appropriateness of outcome measures through a pilot study in two RACFs in the Swiss canton of
      Vaud over a period of one year. A process evaluation will be conducted through the
      triangulation of mixed-method data: self-report scales, semi-structured interviews, document
      analyses, resident health care records and an economic cost analysis. This will form the
      basis for a subsequent cluster-randomized control trial to test the intervention's
      effectiveness. This novel approach of ACP-bp has potential to promote self-determination and
      patient-centered care that improves both the ethical appropriateness and economic
      sustainability of care. It may lead to patients being treated in accordance with their
      wishes, reduce unnecessary overtreatment and avoid distress for family members and health
      care professionals. This approach also responds to calls for models of ACP which can be used
      in people with dementia and people living in RACFs, vulnerable populations that have
      generally remained invisible in ACP research so far.
    

Intervention name(s): Advance care planning by proxy for health care proxies of people without medical decision making capacity
Intervention type(s): Other
Intervention description(s): Two discussions between a trained health professional and a health care proxy of an RACF resident who no longer has decision making capacity. First discussion focuses on life story, values, previous experiences with medical treatments, illness and death. Second discussion also includes treating physician and focuses on establishing general goals of care and medical orders in case of emergency.
Intervention model: Single Group Assignment
Intervention model description: Pilot study of acceptability and fesability
Masking: None (Open Label)
Primary purpose: Other
Keywords: Advance Care Planning by proxy; Surrogate decision making; Advanced Dementia; Decision making capacity