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Advance Care Planning for Individuals with Parkinson’s Disease

Wednesday, January 5, 2022

Parkinson’s disease can be complicated for individuals in that it is a progressive nervous system disorder affecting movement and may be dismissed in its early stages as merely part of the aging process. Symptoms begin gradually, often showing themselves as a barely noticeable tremor in just one hand. While tremors are common, the disease also causes cognitive issues as well as stiffness or slowing of movement.

As with most nervous system disorders, symptoms go from being relatively benign, such as the individual’s face showing little or no expression or their arms not swinging when they walk, and speech becoming slurred to an eventual loss of automatic movement and speech and writing changes. Although the disease can’t be cured, medications can improve symptoms.

 Why Advanced Care Planning? 

While the disease itself offers a risk of individuals being unable to express their wishes when it comes to their medical care and treatment planning, it is often accompanied by other issues which can seriously impede the individual’s quality of life or hasten the end-of-life process and may stand in the way of the individual fully expressing desires for care. Two such more serious issues are as follows: 

  • Cognitive problems: Parkinson’s individuals may experience cognitive issues including dementia and processing difficulties. These usually occur in later stages of the disease and aren’t often responsive to medications. These issues may stand in the way of individuals being able to advocate for themselves and their care or choosing someone to do that for them. Early planning may help alleviate this concern.
  • Emotional changes: individuals may understandably experience a host of emotions upon diagnosis – everything from anxiety regarding an unknown future to depression. These issues are treatable; however, they also may pose a challenge for medical staff when it comes to working with the individual to understand their wishes. In this case, advance care planning (ACP) can be a plan to advocate for the individual in their unwillingness or inability to do so. 

A 2019 study found that four themes illustrate how individuals, and their caregivers perceive ACP as part of clinical care: 

  1. Personal definitions of ACP vary in the context of Parkinson’s disease
  2. individual, relationship, and healthcare system barriers exist to engaging in ACP
  3. Caregivers play an active role in ACP
  4. A palliative care approach positively influences ACP

Researchers found that taken together, these themes support clinician initiation of ACP discussions and interdisciplinary approaches to help individuals and caregivers overcome barriers to ACP. 

ACP in Parkinson’s disease may be influenced by individual and caregiver perceptions, misperceptions, symptoms of the disease (for example, apathy, cognitive issues, disease severity), and models of clinical care. Optimal engagement of individuals with Parkinson’s and caregivers should address ACP misperceptions and use clinic teams and workflow routines to incorporate ACP into regular care. 

Proactive ACP Initiation

As noted, individuals and caregivers often have misperceptions of what ACP truly encompasses and how to initiate discussions with medical teams. They may respond to the question of whether there is an advanced directive in place and think that is the extent of future care planning. Therefore, it is imperative that ACP discussions provide education for treatment options and scenarios. These conversations can take place over the course of the disease and documentation is key in capturing any changing individual wishes. 

Palliative care has shown to be a positive influence on individuals and their caregivers when it comes to ACP and this model may help instruct other medical teams in how to approach ACP with individuals who haven’t yet reached the palliative care stage. 

Often, individuals in palliative care receive guidance in discussing preferences for their healthcare and completing advanced directives. Two specific aspects of this approach are often found to be helpful: 

  1. Systematic and routine inclusion of ACP in palliative care visits with clear and open conversations
  2. Involvement of trained interdisciplinary team members in facilitating ACP conversations

Due to these aspects, individuals felt less alone in the decision-making process and had more confidence in their decisions having been armed with appropriate information. What’s more, individuals often rely on their medical care providers to initiate ACP conversations due to an ignorance of the process. These individuals need frequent discussions with their healthcare provider beginning at diagnosis to feel fully empowered and informed on their disease and treatment options. 

Partnering with an experienced third party vendor whose sole focus is on scaling access to ACP and palliative care is critical in the successful implementation of these interventions. At Iris, our goal is to seamlessly integrate ACP into your workflow so you can focus on improving plan performance and physicians can focus on providing patient centric care. 

Iris takes ownership of the entire ACP process and champions the benefits of ACP to your patient members and physicians. We take the burden of having these conversations off of the providers and remove the barrier to having these discussions. Our team manages the entire ACP process including member identification, engagement, expert led ACP facilitations, documentation completion, and distribution to family and care teams. 

If you’re ready to explore advance care planning solutions, Iris is here to help you identify specific care planning solutions for low, medium, and high risk patient populations.

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