“The need to have clear Advance Directives and discussions about life support is especially critical now.”
Do you have an Advance Health Care Directive? If you are a client our Gilfix & La Poll, you do.
If you haven’t looked at your Advance Directive in a long time, now is a good time to make sure it still matches your circumstances and wishes.
- Do you still want the health care agent you named?
- Has your health changed in ways that might affect your instructions?
- Are your values still the same?
Even if your wishes haven’t changed, it may be time to update; health care providers will be more confident following your instructions if your Advance Health Care Directive is relatively current. In addition, you may have some very specific wishes or fears that you can address in an advance health care directive.
Consider the people who need to know about your Advance Directive. Are they aware of its existence and what your instructions are? At minimum, be sure your health care agent has a copy. You may also want to send a copy to the doctors and medical facilities in which you would be most likely to receive treatment.
Your Advance Directive gives your health care agent broad authority to communicate with your medical and health care providers. In normal times, this communication may be during an in-person conversation. Now, when physical distance is necessary, you may want your directive to make it crystal clear that your agent may communicate with your health care providers by phone, email, video conferencing, or other means.
Expressing your wishes regarding intubation. In very severe cases of COVID-19, intubation—providing oxygen to a patient through a tube attached to a ventilator—may be necessary to keep you alive. In normal circumstances, if doctors feel they can potentially restore you to health by putting you on a ventilator, they're obligated to do that if they can. It makes sense to review your document’s language about intubation and resuscitation with this in mind. Recently, we have actually had conversations with some who have explicitly said that if hospitalized, they want to forgo being intubated if there is a shortage of ventilators. Some have expressed the desire not to be intubated even if there are available ventilators. Others worry about being denied ventilator support if needed.
Be sure you understand what your document says and that it accurately states your wishes. Add a note to your document that clarifies your directions; then make sure others know how you feel.
Finding witnesses or a notary public. Making sure your documents are legally binding could be tricky during this time of social distancing. Besides signing the document yourself, it must be witnessed or notarized. So how can others sign your documents while abiding by guidelines for social distancing? Will updating your document and/or clarifying your wishes require that it be witnessed and/or notarized again?
It may be reassuring to know that you have a constitutional right to direct your own medical care. If health care providers have “clear and convincing evidence” of your wishes, they are duty bound to follow those wishes to the extent they are reasonably able to do so, whether or not you provide your instructions in a witnessed or notarized document.
It’s far better than nothing to write what you want and make sure your doctors and those who are close to you know your feelings. If there’s no conflict among your closest family members—those who would be legally entitled to speak for you—your wishes are likely to be respected.
Communicating with family during the pandemic. In the U.S., many hospitals are banning visitors. This means that in the coming weeks as coronavirus cases are projected to grow, many Americans will be alone in the hospital. And many Americans will die and die alone.
There is immeasurable comfort and reassurance in having a loved one with you when you’re ill. Even more relevant, having that person with you can be physically (and emotionally) therapeutic. It can be life-saving in some circumstances, but even if terminally ill, that presence can be essentially palliative. Just one story:
“Her husband sat in a small plastic chair beside her with his hand on her leg, smiling at some silly sitcom playing on the TV. I hesitated a beat. And then I entered.
I had to tell him. There was no way to soften the blow. The hospital is changing its rules, I said. No more visitors. When you leave today, you both need to say goodbye.
I watched their faces shift. My patient’s breathing quickened, and her ventilator alarm sounded. Her husband quickly moved his hand to her shoulder and her breaths slowed; the alarms silenced. He knew how to calm her. He had been there through all of it — hospitalizations for cystic fibrosis, the transplant, the bouts of rejection. When we took away her voice with the tracheostomy tube, he spoke for her.”
As hospitals banish visitors in an effort to protect against Covid-19, patients will be left alone. That leaves patients to “…suffer through their illnesses in a medical version of solitary confinement.”
“ Talking with one of the nurse practitioners in our hospital’s new Covid-19 I.C.U. one recent night, I asked what worried her most. “Patients dying alone,” she replied quickly.”
The writer goes on to describe efforts to make sure that patients in isolation for coronavirus have an iPad to keep them in touch with loved ones. It makes sense to plan ahead for this, as well. Not all hospitals are able to provide a way for patients to stay connected.
In “normal” times, as indicated in an influential report published in 2017, in the U.S. just 56% of people have had a conversation with their loved ones about end-of-life wishes. And only 27% have documented their end-of-life wishes in the form of an Advance Directive. Fewer than 20% discussed those wishes with their medical practitioner. Few have documented their wishes about end-of-life care. Often families have to make incredibly difficult life and death decisions on behalf of their sick loved ones. Needless to say, advance care decisions and planning should happen well before a medical crisis occurs. The reality is, many have not done this planning, and even if they have, they could not anticipate what a pandemic might portend. COVID-19 has made it even more important to think about how we can alleviate the loss of control it might mean.
Again, in times before the pandemic, if someone in dire straits lacked an Advance Directive, or available next of kin, the default approach would be aggressive, invasive treatment in the intensive care unit (ICU). This might include placing a hard plastic tube down your windpipe, inserting IVs into your blood vessels, and using machines to maintain regular bodily functions (a ventilator to provide oxygen, a dialysis machine to filter blood if your kidneys are damaged).
In this COVID-19 era, the protocols regarding aggressive, curative care aren’t as clear. Some hospitals are considering a do-not-resuscitate policy for all infected patients. Bioethicists have discussed the need for hospitals to create triage committees, a team of nurses and doctors that evaluate COVID-19 cases and make decisions about who should get that care. Individual providers should not have the burden of rationing care. Only a minority of elderly people and those living with serious illnesses who are put on ventilators will survive this pandemic to leave the hospital.
It is important to consider for each of us what we want in this situation. “The current projections indicate that the U.S. could have a shortage of some 1.3 million hospital beds and 295,000 ICU beds.” Some of us would prefer not to be hospitalized; many would not want ventilator care.
Doctors are contemplating their own end of life wishes. Some are sharing them publicly to encourage others to address them as well.
“Dr. Rana Awdish, an ICU physician at Henry Ford Health System and author of In Shock, wrote (on March 21st) on Twitter: “Today I had colleagues tell me that they’ve decided they’d rather die at home rather than come in and traumatize their colleagues who would have to care for them. Today we came up with contingency plans for our contingency plans. Today broke my heart.”
“Even trainees are having these important conversations. For example, residents at Massachusetts General Hospital decided to complete Advance Directives and assign health care proxies during their shifts at work. Perhaps through taking back control in even the smallest way, our own fears and anxieties about the unknown can be lessened, and maybe even our anticipatory grief.” (https://time.com/5812073/endof-life-coronavirus/)
Everyone – especially those who are in frail health already – should have the opportunity to talk about how they would like to be treated if they have a serious case of COVID-19. They need to specify who will speak for them if they are unable. These conversations should include what matters most to them, what they are willing to undergo for a chance to get better, and quality of life as each defines it.
Even though day to day life feels particularly uncertain, there are still choices we can make.