Saying home with coronavirus
The email took me by surprise, but it shouldn’t have. A friend, a 70ish year old widow who lives alone, was envisioning what might happen if she got sick with COVID-19. She is not afraid of dying, but, especially after watching her son die of lung disease, she knows how awful it feels to be unable to breathe. She does not want her life to end with her body connected to machines, lying alone in an intensive care unit. If she gets ill from the pandemic coronavirus, she wants to remain in her home, receive hospice care, and die with dignity and peace. She asked what she needs to do now to make sure her wishes are carried out.
The coronavirus pandemic has made many people more conscious of the possibility of suddenly getting seriously ill, even dying. Maybe your choice is not the same as hers, but it is a good idea anyway to think about what you would and would not want to be done to you if you become seriously ill, and then to communicate your wishes effectively. This is what is termed advance care planning, considering and communicating your choices.
Consider what is most important to you and what you are willing to give up. Is it more important for your body to stay alive as long as possible or for you to live the days you have with as much quality and dignity as you can? What about your life is most valuable to you? What are you willing to give up, and, more importantly, is there anything so precious that you will not risk losing it, even if it costs you your life? Once you understand your values, it is important to communicate those in tangible and specific ways: in conversations with your doctor and your loved ones, and in making sure your advance directives, your living will and durable power of attorney for healthcare, are up to date. General information about advance directives is widely available; today I focus on details of the details relevant to my friend’s question and to anyone else in a similar position. Some of these sound a bit harrowing, but the approach right now needs to be to hope for the best, but plan for the worst.
First, who will take care of you when you get sick? This job usually falls to family members. The tasks of caregiving for a seriously ill loved one is difficult under normal circumstances, but in the current environment, anyone who helps in your care will be exposed to the virus. A hospice agency will provide assistance and equipment, hopefully including respirator masks, gowns, gloves, and other protective devices, but risks remain. You need to think this through and have an honest talk with anyone you might rely on.
Next, review your advance directives (or execute them if you never got around to it.) Your living will is a set of instructions that becomes valid if you are either terminally ill or in an irreversible coma, and you are not able to speak for yourself. Under crisis situations, your living will is a gift to emergency personnel needing to decide who receives scarce resources; this scenario might sound scary, even draconian, but it is exactly what I want my living will to do.
Since your living will is enforceable only under very specific circumstances, it is vital that you appoint someone you trust to speak for you if you can’t speak for yourself, your durable power of attorney for healthcare (DPOA). With a very few exceptions, the person you name is asked and empowered to make all relevant medical care decisions. Make sure that the person you name will be available, possibly on very short notice, and willing to act on your behalf, and talk openly with that person so that they know exactly what you would want. Their job is to speak for you, not to do what they would choose in a similar situation.
Talk with your doctor. The office needs a copy of your advance directives, but it is best to also have a personal advance care planning conversation with your doctor, so they understand just what you want. If, for example you would choose to remain at home and receive hospice care rather than go to the hospital if you get COVID-19 pneumonia, you will need your doctor to know that and to be willing to make the hospice referral.
Your doctor also can help with orders to help enforce your wishes. One of these is a portable do not resuscitate (DNR) form. This is a medical order to any emergency personnel, like ambulance EMTs, to not start CPR if you are found without breathing or pulse. Having this paper in a prominent place, like on the front of the refrigerator, helps make sure you do not go through what would be both unwanted and futile.
In some states, other orders can be made in advance, using physician orders for life-sustaining treatment (POLST). These documents envision different scenarios and say what you would want done in each of them. These vary, even in what they are called, from state to state, and in Ohio, where I live, they are not available.
Hope for the best, but plan for the worst. Vaclav Havel may have said it best, “Hope is definitely not the same thing as optimism. It is not the conviction that something will turn out well, but the certainty that something makes sense, no matter how it turns out.”