Advance Care Planning in the COVID-19 Era

It is always important to have a good advance care plan in place so that your loved ones and medical providers know your wishes concerning your health care if you are incapacitated. The current crisis reminds us how important that can be. Talking to your loved ones or doctor about illness and death is hard, but it is ultimately a discussion about life – about what matters to us. Rather than being driven by fear and anxiety, we can start these conversations from a place of care and concern that gives you and your loved ones the gift of knowledge and understanding and gives you confidence that your health care wishes will be honored in times of medical crisis.

Considerations New to the COVID Situation

There are several ways that COVID-19 is impacting the scope of medical decision-making. Here are a few of our concerns in this ever-evolving situation:

Intubation/ventilation: Intubation and ventilation may be critical interventions to help survive a bout of coronavirus. Some of the forms described below may contain language addressing intubation and ventilation. If you have a care plan in place already, please review your documents carefully to ensure that the language does not create a blanket, express prohibition against intubation or ventilation because that may prevent health care providers from using these treatments if you are suffering from coronavirus. This is distinguishable from a statement that you do not want intubation or ventilation if you are in a persistent vegetative state or terminally ill with only a short time to live. If you are creating a new care plan and choose to address intubation and ventilation, be sure your documents are clear about your wishes.

Experimental treatment: If your existing care plan documents address experimental treatment, review them to be sure that they reflect your current wishes. As of this writing, there are drugs that are still in the experimental phase that are available as coronavirus treatments. Whether you are updating an existing care plan or creating a new one, you may want to consider expressly permitting experimental treatments, either generally or specific to treatment of the coronavirus.

Electronic communication: Be sure that your documents allow the agent acting on your behalf to communicate medical decisions electronically and, if you are modifying documents or creating a new plan, consider expressly authorizing electronic communication of decisions by your agent.

The Care Plan

Below is a list of the essential documents you can use to express your health care preferences in the event you are unable to make your own decisions. The first three are important documents for anyone, regardless of age or health status.

Health Care Proxy: This document appoints an agent to make and communicate health care decisions on your behalf if you are unable to do so yourself. Health care providers and facilities are bound to follow your agent’s decisions as if they were your own. This document may contain provisions for end-of-life care if you are terminally ill, similar to those that would be in a “living will.” You should carry a card in your wallet with the name and phone number of your health care agent and make sure that your agent, your doctors and the hospital at which you are a patient have a copy of your Health Care Proxy. It is a good idea to have a copy in an easy to access location, ready to take with you should you require hospitalization.

HIPAA Authorization:This document authorizes access to your private health information and communication with medical providers, health insurance plans and payors, but does not authorize medical decisions. You can provide such authorization to people in addition to your health care agent.

Living Will: This document expresses your wishes for end-of-life care if you are terminally ill. It is not legally binding in Massachusetts, but it does provide guidance for your family and your doctors. If you prepare a living will as a separate document, you should include parallel provisions in your Health Care Proxy to inform the actions of your health dare agent. 

Do Not Resuscitate/DNR Order: This document alerts health care workers not to use cardiopulmonary resuscitation (CPR) to try to save your life if your heart stops or you stop breathing. It must be obtained from your doctor and is valid only in a hospital or nursing home setting.

Comfort Care/DNR Order Verification: This document is a standardized form issued by the Massachusetts Department of Public Health. It verifies that your DNR order should be honored outside of hospital or nursing home settings. Ambulance services, EMTs and paramedics must immediately recognize and honor this as an actionable order.

MOLST form: A MOLST (Medical Orders for Life-Sustaining Treatment) form is a standardized document issued by the Massachusetts Department of Public Health. Ambulance services, EMTs and paramedics must immediately recognize and honor this as an actionable order. A MOLST functions like a prescription, to relay instructions to and between health care providers about your care. It requires preliminary discussion between you and your physician, nurse practitioner or physician assistant about your current medical condition, the possibilities for progression of your condition, your values and goals for care and the risks and benefits of treatments that may be offered. A MOLST should not to be confused with a Health Care Proxy and differs from a Health Care Proxy in several critical ways: it does not name a surrogate or agent to act for you; medical care providers are mandated to comply with its instructions; and while any competent adult, regardless of health status, should have a Health Care Proxy, the MOLST is meant for patients at risk for life-threatening clinical events due to serious, life-limiting medical conditions. That makes a MOLST problematic, and we do not recommend having one, for patients suffering from the COVID-19 virus who were otherwise in generally good health before contracting the virus, because it is important to have flexibility based on the course of the illness and available treatments. The MOLST is usually printed on bright pink-colored paper to make it highly visible to emergency medical personnel, and you should ensure that it is easy for them to find by displaying it on your refrigerator or by your bed. 

We cannot predict the future. You may never face a medical situation where you are unable to speak for yourself and make your wishes known. But having a care plan in place may give you and those close to you some peace of mind, both during the current crisis and afterward.