Using Advance Directives to Guide Your Medical Care
“You do not need to put me on a ventilator. Keep it for the younger patients, I have had a beautiful life.” As reported in The Brussels Times, Suzanne Hoylaerts, a 90-year-old Belgian woman, made this decision shortly before dying from the coronavirus.
Regardless of her motivations, this brave woman was lucid and still in control of her medical decisions when she spoke with her doctors about the care she would receive moving forward. However, what if she had not been conscious and doctors had to act without knowing her wishes? Would it be wrong to place her on a ventilator? What if she had needed a heroic measure such as CPR?
Medical personnel are trained to adhere to established protocols regarding care. Essentially, unless otherwise legally directed, they will continue to fight to save your life by whatever means are available to them. This may involve invasive tests, tube feeding, mechanical ventilation and other measures. Every patient is different, and every reason for accepting or declining medical intervention is personal.
For instance, an older cancer patient with a poor prognosis may decide they only want palliative care to manage pain and maintain as much comfort as possible. On the other hand, a previously healthy young father who has tested positive for COVID-19 may want every possible attempt at medical support to fight off and recover from the illness. Both patients are within their rights to request the care of their choosing. However, the only way to ensure your wishes are known, is with a living will.
A living will is a written, legal document that spells out medical treatments you would and would not want to be used to keep you alive. It includes your preferences for medical decisions such as pain management and organ donation.
A living will is an advance directive. In New York State, advance directives are a living will, a health care proxy and a do-not-resuscitate order (DNR). As stated by the New York Attorney General, “A living will allows you to leave written instructions that explain your health care wishes, especially about end-of-life care. This document becomes effective when you are unable to make your own decisions, and your doctor confirms that you have an incurable condition.” It is important to note that you cannot use a living will to name a person you want to be involved in your care decisions, acting on your behalf. For that, you must have a signed health care proxy.
If you have a signed health care proxy, and a trusted person is advocating on behalf of your wishes, is it necessary to have a living will as well?
As the American healthcare system continues to strain under the burden of the coronavirus pandemic, doctors and nurses are being tested beyond limits greater than anything we’ve ever seen. Hospitals across the country are enforcing no visitor policies. In most cases, patients are the only ones permitted to enter the hospital. In times of exceptional stress, medical staff may not be able to reach your designee if you should fall ill enough for your health care proxy to come into effect. A living will serves to further clarify your wishes, which can be especially helpful when dealing with a condition that causes rapid deterioration. You may have strong feelings one way or another regarding being placed on a ventilator. With your wishes spelled out in writing in a legal document, you will remove any questions about your desired care.
STEPS YOU CAN TAKE RIGHT NOW
- Determine your wishes. Consider your personal beliefs. You may want to discuss various scenarios and care options with your family. If there is a treatment that you feel strongly about, by including specifications in your living will, you remove doubt as to your wishes. You may want CPR administered if necessary but choose not to be placed on a mechanical ventilator for an extended period. Be specific in spelling out any conditions that are important to you.
- Do you have a living will? If you have a living will, it can be helpful to review it and make any necessary updates. Your thoughts about end-of-life care may change over time. You may have a new diagnosis or change in your marital status that impacts your original instructions.
- If you do not have a living will, now is an excellent time to create one. In New York, you can complete an advance directive which is a health care proxy and living will. This document allows you to provide instructions requesting treatment you want and to refuse medical treatment you do not want in the event you lose the ability to make decisions yourself. You retain the right to revoke your advance directive if you change your mind.
- Speak with an estate attorney. It can be overwhelming to think about end-of-life care. With the current media saturation of coronavirus coverage, social distancing orders and a complete disruption of life as we knew it, decisions can feel even more confusing. It can be helpful to speak with an estate attorney who can offer professional advice and guidance if you have any questions regarding advance directives.
- Create a “go bag” of documents. As we continue to deal with the coronavirus, as patients we can help our caregivers by providing them with as much readily accessible information about us as possible. Have a copy of your advance directives, along with a printed list of your current medications and pertinent medical conditions and/or history available to provide to medical personnel. This will help them to learn about you, treat you and to understand your wishes in the event you are unable to express them.
As we continue to learn ways we can cope with the daily challenges and concerns we face in dealing with this worldwide health crisis, one important way we can bring some order to our lives is with preparation.