Why COVID-19 is Making Me Take a Second Look at My Living Will

by Linda Chamberlain

I signed a Living Will, under Florida law (F.S. Chapter 765), many years ago stating my wishes in the event I was ever in one of the following situations:

  1. A terminal condition, which by statute means a condition caused by injury, disease, or illness from which there is no reasonable probability of recovery and which, without treatment, can be expected to cause death.
  2. An end-stage condition, which by statute means an irreversible condition that is caused by injury, disease, or illness which has resulted in progressively severe and permanent deterioration, and which, to a reasonable degree of medical probability, treatment of the condition would be ineffective.
  3. A persistent vegetative state, which by statute means a permanent and irreversible condition of unconsciousness in which there is the absence of voluntary action or cognitive behavior of any kind and an inability to communicate or interact purposefully with the environment.

What does the living will mean for me today?

I can honestly state when I signed my Living Will I was younger, extremely healthy and in the back of my mind thinking none of these situations are ever going to happen to me.  Now with COVID-19, I’m not so sure.  I’m older, have an auto-immune disease known as vitiligo, and a few times in my life have experienced allergy-induced asthma.

I reread my Living Will and it includes a paragraph that states “It is my intent to fully withhold or withdraw artificial feeding, hydration and respiration in the instances outlined (the ones listed above) as it is my intent to withhold or withdraw such systems in any other terminal condition.”

The Role of the Physician

It goes on to state if my attending physician (defined as the physician who has primary responsibility for the treatment and care of the patient while the patient receives such treatment or care in a hospital) concludes I lack capacity to make health care decisions or provide informed consent I have named a Surrogate to carry out the provisions in this document.  If the Surrogate or Proxy cannot be found, the health care facility may proceed as directed by the document.

I have a long-established relationship with my physician. However, she is my primary care physician and would not be the attending physician managing my medical treatment if I was admitted to the hospital with COVID-19.  It is very likely the attending physician managing my care in the hospital would know very little, if anything, about my medical history, diagnoses, or current treatments without my Surrogate being prepared to communicate the information quickly and accurately.

Be Prepared

I have to make a short plea here to encourage everyone reading to prepare what I call a “Health Care Folder” that includes your Health Care Surrogate Designation document and Living Will, medical history with vaccinations, family medical history, diagnoses, current medications including supplements and over the counter medicines.  And an accurate statement of your alcohol and/or drug use.  Recreational use of certain drugs and alcohol may change your treatment protocol.

From my reading it appears COVID-19 may change your health situation rapidly and, as we hear every day, many have died from this virus.  We know the health care providers are having to make quick treatment decisions and most likely do not often have any idea of the COVID-19 patient’s medical history.  Having your Health Care Folder information prepared and accessible may be lifesaving for you.

Do I need to change my living will given the COVID-19 situation?

So back to the big question, do I need to change my Living Will?  No, not for me.  But what I do need to do is have a serious conversation with my Surrogate and back up Surrogates.  I want them to understand if I do contract COVID-19 and a ventilator is necessary, I want it.  And at that point, I place my life in their hands to determine, after conversation with the attending physician to examine my potential outcomes from the treatment.  In the event my oxygen levels are affected to the point my brain function will not be the same then I want them to let me go.  I hope this conversation will be clear enough for them to feel good about making any necessary decisions.

A piece of paper such as the Living Will is needed, but the reality and actions taken under the document really come by having the conversation with your designated Surrogate. It’s a tough conversation of what you really want and don’t want.  Relieving the Surrogate of the guilt they may feel from making this decision is paramount.  The Surrogate needs to know they are doing what you wanted. Hopefully, the recollection of hearing your voice tell them what you want will bring them great peace of mind when faced with a difficult decision.

DNR (Do Not Resuscitate)

I would be remiss if I did not mention briefly about Florida’s Do Not Resuscitate form. Florida Statutes Chapter 401 provides that resuscitation may be withheld or withdrawn from a patient by an emergency medical technician or paramedic if evidence of an order not to resuscitate by the patient’s physician is presented to the emergency medical technician or paramedic.  The order must be on a valid form and must be signed by the patient’s physician and by the patient or if the patient is incapacitated, the patient’s health care surrogate or proxy as provided in F.S. Chapter 765.

The Do Not Resuscitate Order (DNRO) is a physician’s order and deals specifically with the refusal of cardiopulmonary resuscitation (CPR) in the event of cardiac or pulmonary arrest.  It must be printed on YELLOW paper in Florida to be recognized and honored.  The question I hear regularly is if you have a DNRO where do you keep it?  You need to make sure it is easily seen and available. If you live alone you may want to place it on your refrigerator or inside your freezer in a Ziploc bag with your Health Care Folder.  Otherwise, make sure whoever you live with knows where you keep your DRNO and can make it available to EMS should the need arise.

You can read more about the DNR in our post, “Is it Risky or Reckless Not to Have a DNR?

I will sign off saying “Stay Safe” and as the weeks go by we will all need to determine what that means.

If you have concerns about your living will, DNR, how to have these tough conversations with loved ones, how they will handle these decisions should the need arise or help organizing your healthcare folder, our advocates are here to help. We can arrange phone/video call discussions with family members and help facilitate the conversations. Our experience in healthcare with clients through various situations and dealing with end-0f-life care brings perspective and information that may help family members. We can also arrange consultations between professionals, if you need help creating a living will or other advance directives, or updating old ones.

Additionally, we can help advocate for you in the healthcare system and deal with a crisis. We know it is especially challenging right now, since family members are having to do this without being there. You are not alone, we can help. Call us at 727-447-5845 or 813-333-5020 anytime or click below to schedule a free consultation.