Advance Care Planning and COVID-19: Preparing for the Unknown

10/23/21 | Thought-Leadership

The COVID-19 pandemic has had far-reaching, often unanticipated consequences across every facet of life, from commerce and labor to social life and education. Unsurprisingly, it has also impacted health care; however, its influence has ranged far beyond debates over vaccines and mask mandates.

Much of the population has had to deal with inadequate advance care planning (ACP). Described by the NIH as the process of learning about, considering, and communicating preferences regarding the decisions that need to be made in an emergency or end of life situation1, ACP is generally considered the realm of the elderly and chronically infirm. The COVID-19 pandemic brought that perspective into sharp contrast, though, as it unselectively ravaged both the young and old, healthy and chronically ill. Even frontline health care personnel weren’t spared as COVID-19 tore through the masses, highlighting the need for increased awareness and implementation of ACP.

Despite almost universal acknowledgment that ACP is beneficial, a UK study found that nearly two-thirds of participants avoided ACP discussions because of superstition, discomfort, or desire not to cause distress among loved ones2. While it’s easy to assume that these circumstances only apply to the population at-large, some studies cite even lower rates of participation in ACP discussions among high-risk populations, like those with dementia, cancer, cardiac conditions, and Parkinson’s disease3,4,5,6,7,8. Clearly, a concerted effort is needed system-wide to improve participation in and documentation of ACP.

Many think that advance care planning involves only legal documents like advanced directives (AD), which include ‘do not resuscitate’ (DNR) and ‘do not intubate’ (DNI) orders, organ and tissue donation directives, and POLST/MOLST (Physician/Medical Orders for Life-Sustaining Treatment) documents1. However, ACP encompasses all decisions that may need to be made when a person is no longer able to decide for themselves, including goals of care (GOC), comfort or palliative care, and other life-sustaining but non-curative options.

While data from the pandemic has been somewhat inconsistent, the following themes have emerged regarding utilization of ACP during the COVID-19 pandemic:

  • Social distancing, isolation, and reduced frequency of non-urgent medical care have decreased ACP9,10.
  • ACP plays a critical role in effective utilization of resources in emergency and critical settings while adhering to patient-directed treatment goals9,11,12.
  • The social and medical consequences of an infectious pandemic, along with advances in technology and legal rights, have created a perfect storm for normalizing ACP discussions across health and life settings1,10,12,13,14

Overall, ACP is clearly underutilized. Because it can play a significant role in resource utilization (both equipment and staff), ACP has the potential to not only decrease the burden on hospitals and acute care facilities, but also help mitigate frontline medical worker burnout through more focused application of necessary treatments and therapies.

It can also prevent thousands of people from dying alone and isolated in medical wards despite wishes to pass in the comfort of their homes with family. In short, there are few limits to the potential benefits of widespread use of ACP.


  1. National Institute on Aging. Advance Care Planning: Health Care Directives. National Institutes of Health. Accessed December 27, 2021.
  2. McIlfatrick S, Slater P, Bamidele O, Muldrew D, Beck E, Hasson F. ‘It’s almost superstition: If I don’t think about it, it won’t happen’. Public knowledge and attitudes towards advance care planning: A sequential mixed methods study. Palliative Medicine. 2021;35(7):1356-1365. doi:10.1177/02692163211015838
  3. Lloyd-Williams M, Mogan C, Dening KH. Identifying palliative care needs in people with dementia. Current Opinion in Supportive and Palliative Care. // 2017;11(4):328-333. doi:10.1097/SPC.0000000000000295
  4. Waller A, Turon H, Bryant J, Zucca A, Evans T-J, Sanson-Fisher R. Medical oncology outpatients’ preferences and experiences with advance care planning: a cross-sectional study. BMC Cancer. 2019/01/14 2019;19(1):63. doi:10.1186/s12885-019-5272-6
  5. Stevenson LW, O’Donnell A. Advance Care Planning. JACC: Heart Failure. 2015;3(2):122-126. doi:doi:10.1016/j.jchf.2014.09.005
  6. Tuck KK, Brod L, Nutt J, Fromme EK. Preferences of Patients With Parkinson’s Disease for Communication About Advance Care Planning. American Journal of Hospice and Palliative Medicine®. 2015;32(1):68-77. doi:10.1177/1049909113504241
  7. Delmaczynska E, Newham R. To explore the prevalence and outcomes of advance care planning for patients with left ventricular assist devices: A review. Journal of Clinical Nursing. 2019;28(9-10):1365-1379. doi:
  8. Waldrop DP, Meeker MA. Communication and advance care planning in palliative and end-of-life care. Nursing Outlook. 2012/11/01/ 2012;60(6):365-369. doi:
  9. Younan S, Cardona M, Chroinin DN. Advanced care planning (ACP) in the COVID-19 Era: Lessons Learned, a rapid review. Australasian Journal on Ageing. 2021;40(S1):43-44.
  10. Hirakawa Y, Saif-Ur-Rahman KM, Aita K, Nishikawa M, Arai H, Miura H. Implementation of advance care planning amid the COVID-19 crisis: A narrative review and synthesis. Geriatrics & Gerontology International. 2021/09/01 2021;21(9):779-787. doi:
  11. Straw S, McGinlay M, Drozd M, et al. Advanced care planning during the COVID-19 pandemic: ceiling of care decisions and their implications for observational data. BMC Palliative Care. 2021/01/11 2021;20(1):10. doi:10.1186/s12904-021-00711-8
  12. Reja M, Naik J, Parikh P. COVID-19: Implications for Advanced Care Planning and End-of-life Care. The western journal of emergency medicine. 2020;21(5):1046-1047. doi:10.5811/westjem.2020.6.48049
  13. Raftery C, Lewis E, Cardona M. The Crucial Role of Nurses and Social Workers in Initiating End-of-Life Communication to Reduce Overtreatment in the Midst of the COVID-19 Pandemic. Gerontology. 2020;66(5):427-430. doi:10.1159/000509103
  14. McAfee CA, Jordan TR, Cegelka D, et al. COVID-19 brings a new urgency for advance care planning: Implications of death education. Death Studies. 2020:1-6. doi:10.1080/07481187.2020.1821262