Advanced Care Planning: The Gift of Empowerment for Patients With Cancer

Advanced Care Planning: The Gift of Empowerment for Patients With Cancer

National Healthcare Decision Day is April 16th, a day that aims to highlight awareness around patients creating their own medical plans in advance of health decline in the event they are unable to make healthcare decisions on their own. This is an essential piece of medical care that is known as advanced care planning (ACP). ACP is a process by which patients are empowered to provide specificity and intention around their future medical care should they be unable to consciously orchestrate it themselves. These vital documents communicate a patient's wishes and preferences, directly from the patient themselves, which their caregivers and interdisciplinary teams can follow closely. However, a review of the literature shows that only about 1 in 3 Americans have any ACP at all.¹ ACP is necessary for any adult in preparation for the event of a medical crisis or emergency in which they may be incapacitated and unable to make healthcare decisions for themselves.

ACP provides more than just a document, such as a living will, healthcare proxy, or durable power of attorney for health care; it also reflects the identity, values, and emotional labor that the patient and their care team thoughtfully curate to ensure a smooth, peaceful end-of-life transition. ACP includes an individual’s goals of care, treatment preferences, and location of where they want their health care to be facilitated.^2,3 These conversations pave the way to aligning end-of-life care that best reflects each individual's belief system ensuring it is a patient-centered approach to this type of care.^4,5 Every individual deserves the care that aligns with their values, beliefs, and personal choices.

ACP discussions, while they can be challenging and emotionally taxing to approach, ultimately support a patient’s autonomy and agency in their end-of life care and serves as a blueprint for their caregivers and interdisciplinary teams to follow. The goal is that these conversations will be intentional, clear, and dynamic, which is often less possible as a medical condition progresses, as many cognitive faculties and the physical body begin to fail. When an individual has an advanced care plan in place, this can lessen the burden on loved ones who are called upon to make decisions.⁵ A well-developed advanced care plan is a gift to caregivers, as it provides unity and cohesiveness among the patient’s wishes, their loved ones and medical teams.^6,7 ACP can also decrease potential conflict among caregivers who may have opposing views on healthcare decisions. These pre-approved guidelines and boundaries remove the uncertainty of what an individual may or may not want and ultimately empower the caregiver to not only support their ill loved one but take care of themselves as well. With a well-developed advanced care plan, caregivers and loved ones can reduce stress, anxiety, and depression often experienced with end-of-life decision making, which in turn can improve their bereavement journey.^8,9

In addition to the elimination of the burden on caregivers and loved ones, having a dynamic advanced care plan that addresses many possibilities may reduce stress and moral distress among nurses who work in intensive care units as well.¹⁰ A properly executed guidebook of exactly how and where an individual wants their end of life care conducted removes the emotional and cognitive labor of the medical professionals in their midst. Oftentimes, due to the planning that was put into the patient’s advanced care plan, patients can increase their quality of life by using hospice services or palliative care and decrease their time spent in a hospital.^11,12

As mentioned before, these conversations can be daunting and perceptively difficult to have. However, these conversations should not be avoided because of their initially daunting perception. Caregivers, medical teams, and their patients should begin to broach these conversations before a crisis exists and as early in the care process as possible. There are a few integral components of these conversations that can ensure a successful execution. First, it is important for a healthcare provider to build rapport and trust with the patient and their family. Without this foundation, it can be difficult to understand the individual’s values and beliefs, especially on such a sensitive topic.

Additionally, because this can be a challenging topic to broach, choosing the appropriate setting is critical. Finding a private space that will protect the patient’s privacy and confidentiality is especially supportive in creating a safe space for all parties. Normalizing the timing, content, and importance of this discussion is critical in opening with this topic, as it might feel abrupt or shocking to many without some level of priming.

Lastly, a few details that are crucial in this conversation are: understanding the patient and caregiver’s healthcare literacy, staying neutral and unbiased, coming from a place of cultural humility and with a trauma-informed lens, and framing the conversation positively. This is a gift, a guiding light, not just for those caring for them but for the patient themselves, that allows them to be in control until their final breath. The ultimate goal is that the patient’s wishes, preferences, values, and beliefs for their end-of-life care are accounted for and executed to the fullest extent.

ACP is the cornerstone of patient, caregiver, and interdisciplinary empowerment in the end-of-life space. ACP empowers patients to articulate their own medical care preferences, serving as a key communication tool for caregivers and interdisciplinary teams alike. Despite its importance, studies show that only a minority of Americans have engaged in the ACP process, highlighting the need for greater awareness and participation in this approach. ACP goes beyond mere documentation; it embodies the identity, values, and emotional considerations of patients and their care teams, ensuring a patient-centered approach to end-of-life care.

References

1. Yadav KN, Gabler NB, Cooney E, et al. Approximately One In Three US Adults Completes Any Type Of Advance Directive For End-Of-Life Care. Health Aff (Millwood). 2017;36(7):1244-1251. doi:10.1377/hlthaff.2017.0175
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11. Teno JM, Gruneir A, Schwartz Z, Nanda A, Wetle T. Association between advance directives and quality of end-of-life care: a national study. J Am Geriatr Soc. 2007;55(2):189-194. doi:10.1111/j.1532-5415.2007.01045.x
12. Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med. 2014;28(8):1000-1025. doi:10.1177/0269216314526272