One Year Into COVID Pandemic, Disparities in Advance Care Planning Discussions Remain

Originally featured in the American Academy of Home Care Medicine quarterly publication, Frontiers.

Why is Advance Care Planning (ACP) of interest to providers of house call medicine? At this time, one year after the attack of COVID, our most frail patients remain at home, fearful of getting sick, isolated from friends and family, and with limited resources to engage in meaningful conversations about their goals, values, and wishes. As privileged providers of in- home care to patients, we have opportunities to connect with our patients, even with face- masks, shields, and other protective equipment. In addition, since March 2020, we can continue these conversations through telemedicine platforms using video capabilities, like never before, making these interactions more purposeful.

According to a consensus definition by a multidisciplinary Delphi panel, “Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals, and preferences during serious and chronic illness” (Sudore, 2017). From these conversations, advance directive documents can be completed using the information shared. Advance directive (AD) documents include living wills, designation of health care proxy, and other documents that serve as legal documentation of patient wishes. Medical directives like the POLST forms are medical orders that also can be completed based on these advance care planning conversations. These orders are durable and portable and remain in effect across all domains (home, SNF, hospital)(POLST). Completion of advance directive documentation on all patients is critically important, especially the designation of a healthcare proxy, who is familiar with patient wishes and can help to use substituted judgment if patients are no longer able to articulate their needs.

The purpose of these ACP conversations is to be able to understand what matters most to the patient, their hopes and fears, their concerns if their health should decline, and then understand how medical care can most optimally be aligned with expressed concerns. It is an opportunity to set out a roadmap for the patient and family to understand where they are now and where they may be heading if their condition deteriorates. Through this process, the patient (and surrogate) can be proactive in making further medical and other decisions –putting them in the driver’s seat for their own care.

Studies support early ACP conversations as they contribute to improved patient quality of life, increased patient emphasis on comfort, increased likelihood of use of hospice services, increased likelihood of a patient dying in their preferred location (home vs. hospital) (Bischoff, 2013), not to mention, reduced hospital admissions (Chen, 2018), and medical costs (Klinger, 2016)(Bond, 2018).

In reviewing the characteristics of who gets ACP conversations, we find that a majority of patients are older age, Caucasian, with a history of chronic disease, higher socioeconomic status, higher education level, and with more significant functional impairments (Teno, 2007)(Orlovic, 2019).

In contrast, studies show that Blacks and Hispanics disproportionately are not having ACP conversations (Teno, 2007), lack advance directives (Huang, 2016)(Clark, 2018), and are more likely to die in the hospital and receive more intensive treatments at end-of-life (Orlovic, 2019). Studies have shown that Blacks tend to be less likely to complete AD and were more likely to prefer aggressive treatment, compared with Whites, which has been thought to be related to distrust of the healthcare system (Kwak, 2005). Whether this disparity is due to race, culture, socioeconomic status, or education is not clear. What is clear is that these disparities continue to exist and need more concentrated attention by medical professionals and community groups.

Other barriers for patients include increased emotion around the topic, fear of death, cultural and legal factors (Committee on Approaching Death, 2015), fear of affecting physician-patient dynamic, fear of affecting family dynamic, lack of time, and lack of priority (Bernard, 2020). For providers, barriers include fear of patient reaction (emotion, loss of hope), lack of expertise or skill in having these conversations, time commitment, lack of knowledge around ACP vs. AD vs. orders for life-sustaining treatments, or feeling that someone else is better positioned to have these conversations (Lund,2015) (Howard, et al, 2018).

What is being done to help to promote further ACP? Senator Blumenthal (D. Conn), sponsor of the Compassionate Care Act on December 2, 2020, introduced a bill (S.4945)  to the Senate which increases funding for Advance Care Planning public education, training and education to health care workers, telehealth availability to complete ACP, feasibility evaluation of a national ACP platform and registry to improve access for patients and health care providers (Famakinwa, 2020) (Congress.gov, 2020). The introduction of this bill is especially helpful during this COVID pandemic when patients may be living with family members, out of state, and may not have access to their ACP documents, in which case having improved access is critical.

COVID has brought to light the need for frequent ACP conversations for patients to express their goals and wishes and what matters most and to elect who they would like to make decisions on their behalf, if they are not able.  Many patients are choosing to forego the hospital given the fear of being put on a ventilator, or even dying in the hospital without the ability to see family. This reality highlights the critical need to ensure patient wishes are discussed and documented. All healthcare workers should be training in how to have these conversations and patients should be asking their providers to engage in meaningful discussions around ACP. This bill, if enacted, will help facilitate  more of these conversations with  ease of use through telemedicine platforms, and with a national registry for improved access.

House call practices and providers have an opportunity to connect to all patients on what matters most to them and to ensure that everything possible is being done to facilitate aligning medical care with these wishes. Knowing that specific populations are underserved with regard to having these meaningful discussions, our practices can implement procedures and programs that ensure that all patients can receive goal concordant care.

References:

Bernard, C., Tan, A., Slaven, M., Elston, D., Heyland, D. K., & Howard, M. (2020). Exploring patient-reported barriers to advance care planning in family practice. BMC Family Practice, 21(1), 1–9. http://doi.org/10.1186/s12875-020-01167-0

Bischoff, K. E., Sudore, R., Miao, Y., Boscardin, W. J., & Smith, A. K. (2013). Advance Care Planning and the Quality of End‐of‐Life Care in Older Adults. Journal of the American Geriatrics Society, 61(2), 209–214. http://doi.org/10.1111/jgs.12105

Blumenthal, R. (2020, December 2). Text – S.4945 – 116th Congress (2019-2020): Compassionate Care Act (2019/2020) [Webpage]. http://www.congress.gov/bill/116th-congress/senate-

bill/4945/text

Chen, C. Y., Thorsteinsdottir, B., Cha, S. S., Hanson, G. J., Peterson, S. M., Rahman, P. A., Naessens,

44.M., & Takahashi, P. Y. (2015). Health Care Outcomes and Advance Care Planning in Older Adults Who Receive Home-Based Palliative Care: A Pilot Cohort Study. Journal of Palliative Medicine, 18(1), 38–44. http://doi.org/10.1089/jpm.2014.0150

Clinician-Patient Communication and Advance Care Planning—Dying in America—NCBI Bookshelf. (n.d.). Retrieved January 18, 2021, from http://www.ncbi.nlm.nih.gov/books/NBK285677/