COVID-19 is quickly becoming the leading cause of death in the United States. As of today, Indiana has over 37,000 cases of COVID-19 and over 2,100 deaths. That is why articulating your wishes regarding end-of-life health care, is more important than ever. It has been suggested that a video may be adequate if one does not have an advance directive. Such informal advance directives do provide information about your wishes, but they are not legally binding. As health care lawyers, we urge readers to create legally binding documents now, which is not as arduous as one may believe.
Only about one in three Americans has completed any type of advance directive. Many younger Americans don’t feel compelled to complete their own. Even in a pre-pandemic world, we often emphasized to our law students that the people behind the case names and the years-long court battles, like Terri Schiavo and Karen Ann Quinlan, were in their twenties when they lost the ability to make their wishes known. Although COVID-19 has been shown to have more serious outcomes for those who are older, U.S. data shows that many younger individuals are admitted to intensive care units. Often, COVID-19 respiratory demise comes on rapidly, making last minute expressions of preferences unlikely. These clinical realities, coupled with the current PPE shortages that make visitors an impossibility, and well-founded fears of disparate and even discriminatory treatment of marginalized communities, makes it even more difficult for clinicians to elicit detailed patient wishes at admission. In addition to having conversations with their loved ones about their preferences for care in life-threatening situations, people need to actually put advance directives in place.
Advance directives are your written instructions, recognized under state law, regarding health care decisions in the event you become too ill to communicate your decisions yourself. Although state laws vary, the most common types of advance directives are the durable power of attorney for health care and the living will. A durable power of attorney for health care names a person to be your health care agent and allows you to name one or alternate agents. If you become too ill to communicate your health care decisions for yourself, your agent can make decisions for you.
A living will is a document that states your wishes about the types of care that you do or do not want to receive. Living wills typically address treatments such as CPR, breathing machines (ventilators), dialysis, and feeding tubes and IVs. The two types of documents can be combined, so you can both name your agent and give that agent instructions within the same document. In the absence of these documents, some states allow patients who are able to communicate the name of a surrogate decision maker to their health care provider and grant them authority to make decisions about life-sustaining treatment.
Although sometimes advance directives are not honored, studies show that people who have executed advance directives are much more likely to get care in line with their own preferences. Advance directives are especially important in the time of COVID-19, as many hospitalized patients are not allowed to have any visitors at their bedside. It is particularly important that wishes are articulated clearly in writing when someone is not able to advocate for a patient in person.
A traditional advance directive will address most of what you need, even during the pandemic. However, there are a few additional issues to consider when creating or updating advance directives in light of what we know about COVID-19.
COVID 19 attacks the lungs, and in severe cases where other tools have not worked, some patients will need mechanical ventilation. Health care systems have been developing protocol when there are not enough ventilators for everyone. That, along with stories of recovery after ventilator use, may spur each of us to rethink what we would want in the event we fall seriously ill. Some of us may wish to forego mechanical ventilation and seek comfort care at the end of life if ill because of COVID-19, even if we otherwise are not willing to forego such life support. Some of us may wish to continue all life support options regardless of this situation. Whatever your wishes, now is the time to reflect on your wishes regarding use of life-sustaining treatments like a ventilator, as well as other other forms of resuscitation such as CPR.
Notarization and witnesses. About 48 states require notarization and/or witnesses for an advance directive to be valid. Physical distancing and stay at home orders make this difficult, but many states, like Indiana, now allow for remote notaries. As of March 30, 2020, in Indiana, registered remote notaries can swear a witness in remotely with audio-video communication technology. Indiana law, like many states, requires a living will to be signed with two adult witnesses. Indiana should follow the lead of states like New York, which is allowing remote witnesses. Even in states which still require in-person witnesses or notaries for official advance directives, it is still worthwhile to have conversations with as many friends and family members as possible, to verbally designate someone to speak on your behalf, and to write down your wishes regarding treatment choices. Even if not satisfying technical legal requirements, these informal advance directives can be important for family members, friends, providers, and even courts in determining what your desires about end of life care are.
Rapid disease development. As patients with COVID-19 may decline quickly, it may be wise to complete forms memorializing such orders before they are needed. Usually printed on brightly colored paper, a Physician Order for Life-Sustaining Treatment (POLST) is a form designed to memorialize all such orders in one place. Although they are usually intended for use with people near the end of life, a POLST may be appropriate in other cases given the speed at which COVID-19 can progress. Your health care provider may ask you to discuss one as another step toward ensuring that your wishes are followed. You can void the POLST if conditions or your wishes change (such as if a COVID-19 crisis point has passed).
Where to start. Advance directive forms and information on your state’s requirements are often available from your state bar association, or from Caring Connection (part of the National Hospice and Palliative Care Organization).
The most important thing you can do is to talk about your wishes with your loved ones, the person or persons that you choose as your agent and alternate agent, and your health care provider. The conversations are difficult, but they are important, and resources from the Conversation Project and the Center to Advance Palliative Care, among others, can help make them less uncomfortable. The Conversation Project has released a COVID-19 specific guideline, which encourages individuals to designate a health care proxy and includes a form, and the National POLST Office offers a variety of resources at this website.