While stroke has been moved from the third to the fifth-leading cause of death in the United States, thanks to recent advances in prevention and treatment, according to the American Heart Association (AHA), stroke survivors still face increased rates of post-stroke illness. The AHA states that a high rate of stroke recurrence is an important factor in post-stroke death and disability: one-quarter of the nearly 800,000 Americans who suffer from stroke each year are survivors of a previous stroke. What’s more, the AHA notes that people who survive a stroke have twice the risk of developing dementia after the first stroke and one in three develop dementia following a recurrent stroke.
With the rate of recurrent stroke and disability so high, stroke survivors are prime candidates for advanced care planning (ACP). These individuals often are left with difficulty communicating or making decisions regarding their healthcare due to cognitive decline and this leaves care planning up to the family. The American Academy of Neurology has identified discussions around individuals’ goals of care and documentation of advanced directives as a major factor in quality-of-life improvement for individuals hospitalized with neurologic illness. This comes as the AHA issued a statement on palliative and end-of-life care in stroke recommending individual- and family-centered care discussions.
Barriers to ACP with stroke individuals comes down to communication and comfort with the topic. Some of the issues surround the following:
- Lack of understanding of the meaning of end of life within the context of stroke
- Inadequate information provided around the time of diagnosis
- Lack of knowledge about ACP
- Difficulty in thinking about dying and an inability to make future plans
- A belief that family members or caregivers know what to do
- A belief that putting things in writing influences the withdrawal of medical treatment
While there is recognition among the medical community that ACP is an increasingly important part of healthcare services, interactions with individuals and their families regarding this planning is still not routine. While the facts of a diagnosis are often presented from healthcare providers to individuals, the more emotional or practical side of future planning is often overlooked. Conversations with healthcare providers are often remiss in including things such as emotional support, prognosis, spirituality, and information surrounding the act of dying itself.
For those who have suffered a stroke, engaging in frank and honest discussions regarding ACP may be difficult as a prognosis is not always black and white. There is often some ambiguity around the cause of stroke or the likelihood of it happening again. Because of this, family members and the individuals themselves, may not understand the importance of planning for future care.
Healthcare providers also may have a lack of understanding regarding ACP and therefore may feel uncomfortable initiating the conversation or feel that it is out of their realm of expertise. The lack of knowledge of ACP and the assumption that it is the same as an advanced directive, designation of care, or living will is a major symptom in the breakdown of conversation.
Individuals often believe that once they assign someone the responsibility of making their advance care planning they have done what is necessary to cover themselves. However, that is only the first step. Having ongoing conversations regarding care goals, preferences and medical outcomes with both care providers and family members are imperative as medical conditions and individual preferences change. It is optimal to have these conversations before a health event arises when there is plenty of time and clarity to make decisions. Without these conversations and documentation, providers are often left to make quality of life considerations for members on their own, or rely on members’ family members for their input.
At Iris, we take ownership of the entire process and champion 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, outreach, expert led ACP facilitations and discussions, documentation completion, and distribution of directives to care teams to ensure goal concordant care. Our ACP processes are scalable across populations with no strain on internal provider resources.