COVID-19 has dramatically changed the way we, as a human race, live and interact with each other as a society. The rate of people who have been infected continues to rise on a daily basis, by the thousands. Currently, over 15,000 people have died with countless more people negatively affected economically due to the various closures experienced globally (Click here for current statistics on COVID-19 infections and death). I am sure most people are nervous or anxious about what the future will bring. Many are asking, “What can I do to prepare for this pandemic?” There are different ways to prepare. There have been floods of people at COSTCO stocking up and reports of people hoarding various supplies from grocery stores across the country. We’ve all read about how hand sanitizer is out of stock and even toilet paper is in short supply! I am not trying to act as though I have all the answers, but I do want to offer some advice from the perspective of a critical care doctor on what to do to prepare for serious illness. My comments are based on 20 years of being a witness to people who are ill-prepared for tragedy that has struck them or a family member.
COVID-19 is in fact a serious illness. While it is true that most people who ‘test positive’ are not that sick or can be managed symptomatically at home, based on the early experience in China and Italy, approximately 15-30% of people who contract the virus will have a severe form of the disease.[i],[ii] Most patients that require hospitalization need assistance with their breathing; 40% need oxygen, and 5-15% will need admission to an Intensive Care unit (ICU) and require support from breathing machines or respirators.[iii],[iv] Unfortunately, 1.5-7.0% of all patients with COVID-19 succumb to their disease and up to 50% of those requiring ICU admission will in fact die.i,[v],[vi] Most of the patients who have required admission to the ICU have tended to be older (median age ≈60years), and 40% have had comorbid conditions, like heart problems or diabetes.[vii] All of this disease and death is causing tremendous human suffering and putting an unprecedented stress on the health care system. Decision-making about who gets admitted to the hospital or who gets admitted to the ICU is and will only continue to be difficult as resources to manage the illness are limited or in short supply. There are not enough health care professionals or hospital beds to keep up with the demand in countries like Italy and Spain. Unfortunately, there are currently no proven therapies to treat COVID-19 although many trials are underway or soon to start.[viii]
So, what can you do now, to prepare for COVID-19? You need to learn and understand how medical decisions are made when people are seriously ill and what you have to say and how best to work with the doctors, so you get the medical care that is right for you. Any Advance Care Planning (ACP) that you may have done, which has likely been focused on ‘end of life’ care will not be helpful in the current situation. Planning for end of life care, when you know for certain you are dying, is not the same as planning for serious illness, let’s call that Advance Serious Illness Preparations and Planning (ASIPP). COVID-19 is an example of a serious illness where there is a probability of death but as well as a probability of survival (Click here for more information on the difference between end of life care and serious illness). Unfortunately, doctors will have to make treatment decisions about whether you should go to an ICU or go on breathing machines BEFORE they know your outcome (whether you are going to live or not). If you were to get sick with COVID-19, to make it easy on the doctors having to make these difficult decisions as well as ensuring you get the care that is right for you, you should be able to verbalize your answers to the following questions:
“Today, given your current health state, please tell us what is most important to you when considering the treatment options for serious illness:”
In taking the steps to think about these questions and ensuring you clearly communicate your answers (your preferences and wishes), doctors will then be able to use your answers to connect those values to possible medical treatments that could be offered during serious illness using the following grid:
Remember, you are not making a medical decision when you go through this process, you are preparing to make a medical decision. Medical decision-making is shared with the doctor and you will want their input on your medical condition, your prognosis, and help in figuring out what is best for you (See Figure on Shared Decision-making). You need to share your responses to these questions with your family members because if you are too sick to participate in decision-making, they will be called upon to make decisions on your behalf. Most family members find that experience of making life and death decisions on behalf of others very stressful but knowing your wishes will make it easier on them.
Let me illustrate how this works. My 91-year-old father-in-law is just waiting to punch his ticket to get out of here. He buried his wife of more than 60 years last year and now lives alone in a senior’s residence. While he enjoys reasonably good health, he is not interested in medical treatments that prolong life (would rather focus on quality) and would prefer a natural death without being attached to machines. Consequently, he is interested in comfort measures only. If he were to contract COVID-19, he would not want to go to an ICU and be on breathing machines, even if his breathing were to get labored and his oxygen levels low. He would want to request ‘comfort measures’ only and treatments would be offered just to deal with his symptoms. Unfortunately, doctors do not always respect patients’ wishes for limitations of care[i], so it will be important for him, if he is able, or my wife and I, if we are called upon to make decisions for him, to advocate for him and see that he gets the medical care that is consistent with his wishes.
In contrast, my own 84-year-old father is the primary care giver to my mother, who has advanced dementia. If he were to contract COVID-19 and succumb to this serious illness, there would be a severe strain on our family as my mother may then require more advanced care, such as having to be placed in a long-term care facility. As a result of this, my father wants to stay well and stay alive to fulfill this important caregiver role. He does value treatments that prolong his life and is ok with machines but doesn’t want a prolonged ICU stay that will result in him being alive but weak and disabled. Consequently, he can express a preference for a ‘short-term trial of ICU excluding CPR.’ However, in my father’s case, there may be such shortages of ICU beds or breathing machines that it may not be offered to him, because of his age and clinical circumstances. This is the harsh reality of this pandemic, that there are insufficient resources to care for all those who need them. Doctors will be guided both by evidence of who will get better from COVID-19 and who will not as well as by local and provincial policies.
A final thing to consider when preparing for serious illness, we like to say “hope for the best but prepare for the worst.” What would happen if you or a loved one became seriously ill or even died from COVID-19? I know it is difficult to think about this and talk about this with loved ones, but please, I encourage you to do so. There are things you can do while alive to ease the burden of your passing on your loved ones. Here is a checklist of things to think about and do to prepare for the inevitable (either COVID-19 or some other type of future serious illness):
I hope these reflections from someone such as myself, a critical care physician help you prepare for the serious illness that is upon us in these current times. I do not want people to stress or worry excessively about the future and what might happen. Chronic stress will weaken one’s immune system and make them more susceptible to infections. Please, just take steps to prepare and hope for the best. I sincerely wish that serious illness passes over you and your family. However, if you do prepare for it, you will have tremendous peace of mind and those left behind will be grateful that you shared your feelings, values, and plans with them.
Stay well and be safe.
[i] Guan WJ, Ni ZY, Hu Y, Liang WH, Ou CQ, He JX, et al. Clinical characteristics of coronavirus disease 2019 in China. N Engl J Med. 2020. https://doi.org/10.1056/NEJMoa2002032.
[ii] Ji, Dong and Zhang, Dawei and Chen, Zhu and Xu, Zhe and Zhao, Peng and Zhang, Mingjie and Zhang, Lunqing and Cheng, Gregory and Wang, Yudong and Yang, Guang and Liu, Hongxia and Li, Boyu and Ji, Junsheng and Lau, George and Qin, Enqiang, Clinical Characteristics Predicting Progression of COVID-19 (2/17/2020). Available at SSRN: https://ssrn.com/abstract=3539674
[iii] Wu Z,McGoogan JM. Characteristics of and important lessons from the coronavirus disease 2019 (COVID-19) outbreak in China. JAMA. Published online February 24, 2020. doi:10.1001/jama.2020.2648
[iv] Grasselli G, Pesenti A, Cecconi M. Critical Care Utilization for the COVID-19 Outbreak in Lombardy, Italy: Early Experience and Forecast During an Emergency Response. JAMA. Published online March 13, 2020. doi:10.1001/jama.2020.4031
[v] Livingston E, Bucher K. Coronavirus Disease 2019 (COVID-19) in Italy. JAMA. Published online March 17, 2020. doi:10.1001/jama.2020.4344
[vi] Wu Z, McGoogan JM. Characteristics of and Important Lessons From the Coronavirus Disease 2019 (COVID-19) Outbreak in China: Summary of a Report of 72 314 Cases From the Chinese Center for Disease Control and Prevention. JAMA. Published online February 24, 2020. doi:10.1001/jama.2020.2648
[vii] Wang D, Hu B, Hu C, et al. Clinical characteristics of 138 hospitalized patients with 2019 novel coronavirus infected pneumonia inWuhan, China. JAMA. Published online February 7, 2020. doi:10.1001/jama.2020.1585
[viii] Murthy S, Gomersall CD, Fowler RA. Care for Critically Ill Patients With COVID-19. JAMA. Published online March 11, 2020. doi:10.1001/jama.2020.3633
[ix]Lee RY, Brumback LC, Sathitratanacheewin S, et al. Association of Physician Orders for Life-Sustaining Treatment With ICU Admission Among Patients Hospitalized Near the End of Life. JAMA. Published online February 16, 2020. doi:10.1001/jama.2019.2252