COVID-19 underscores need for proactive care planning

This scene has been repeated hundreds of times in Rochester over the past several weeks, and countless times across the globe: A person develops COVID-19 symptoms—most commonly a cough, fever, and shortness of breath—severe enough to be admitted to the hospital. 

The patient might recover with extra monitoring and support, including extra oxygen through a nasal cannula (tubing that delivers oxygen through prongs in your nose) and support with inhaled breathing treatments. In the minority of cases, however, the patient does not improve with these interventions.

The patient might develop a pneumonia or even more severe complications from the infection, such as acute respiratory distress syndrome, a fluid buildup in the lungs that blocks oxygen from reaching the bloodstream and nourishing the organs. In such cases, as a last resort, an artificial breathing machine (or ventilator) may be used to support a patient. 

Much of the national discussion about ventilators has revolved around whether we have enough of them. Health care workers fear the horrifying prospect of not having enough to take care of everyone who might benefit from a ventilator.

We’re not there in Rochester and hope never to be. As of this writing, Monroe County had more than 600 ventilators—plus anesthesia machines that can be adapted for ventilator capacity—and 35 COVID patients on them, in addition to those on ventilators for other reasons. If we continue to slow the spread and flatten the COVID curve with hand washing, mask wearing and social distancing, no patient need lose the ventilator option for lack of supply. 

That doesn’t mean, however, that because a ventilator can be used, it should be. Here’s where every person has an opportunity—not created by COVID but brought to the front of our minds by it—to make important decisions about how they want to be cared for if and when they cannot speak for themselves.       

But first, let’s briefly review what a ventilator is and how it functions. 

Ventilator 101: a tool for buying time 

When a patient experiences respiratory failure—from COVID or another a lung infection or injury—the ventilator breathes for them. When this happens, the patient is sedated and sometimes paralyzed while a specially trained clinician inserts a tube into the patient’s mouth and through the windpipe into the lungs. That tube connects at the other end to the ventilator, which artificially forces air into the lungs. The hope with COVID is that this artificial breathing with extra oxygen will keep the brain and other organs functioning long enough for the virus and its complications, like ARDS, to recede.     

Clinical experience is finding that COVID patients are remaining on ventilators for long periods—often a week or more. The longer one stays on a ventilator, the greater the risk of complications such as secondary infections, heart and kidney failure, and brain damage. The amount of sedation required can itself damage muscles, nerves and brain function, on top of the organ damage caused by the disease. Those requiring a long period of mechanical ventilation also often need a tracheostomy, a surgical procedure to place a breathing tube in the neck (below the vocal cords) down to the lungs. Patients on breathing machines also require artificial nutrition through a tube into the stomach.

The evidence available so far suggests that approximately half of all COVID patients who go on ventilators do not survive despite maximal efforts. Those who do survive may require a long period of recovery even if they ultimately return to their former state of health or something close to it.

However, that survival rate likely drops below 50 percent for patients who are frail to begin with—those who have complex illnesses or multiple conditions such as cancer, diabetes, hypertension, or chronic obstructive pulmonary disease. We are also finding that older frail patients with serious co-morbidities are highly unlikely to survive being on a ventilator. If they do survive, they are far likelier to emerge more debilitated than before, possibly bed-bound and in chronic need of care.

Ventilators are wonderful tools that help save lives. But they do not save every patient, and some who survive will do so in a far-diminished condition. These are the realities of COVID-19. Faced with these realities, what does one do about them? 

It starts with conversations you have with yourself, your health care providers, and your loved ones:

Understand your own medical context: Consider speaking with your physician about the state of your health today. What chronic conditions do you have? What might your prognosis be irrespective of getting sick with COVID? Ask what your risks might be with invasive therapies such as going on a ventilator or artificial cardiopulmonary resuscitation, and possible outcomes. If you are younger and healthier, your chances of a good outcome are better than if you are older and frailer with multiple chronic conditions or advanced cancer. You must first understand your condition before considering your options. 

Ask yourself what you value in life: Of course, most people want to live. The more difficult question is how you live. What balance you would choose between length and quality of life. What matters most to you? What gives your life meaning? What brings you joy? If the treatment intervention might enable you to survive but in a diminished state, where would you draw the line? Would you be OK with being bed-bound in a nursing home if you could listen to music and see trees outside? What if you needed 24-hour care and developed bedsores—might you accept that if it meant seeing your first grandchild born? 

What burden or suffering would you be willing to endure for what outcome or benefit? If you can share with your medical providers what matters most and how you want to live, they can provide the best guidance and recommendations regarding the role and effectiveness of invasive therapies to accomplish those goals. This is a highly personal set of decisions. Some people want heroic life-sustaining measures no matter what. Others know they do not. Some people might be willing to go on a ventilator for a trial period—but not stay on it if they are not getting better or if other organs start to fail. There’s no right or wrong answer—just a proactive opportunity to have control of the care you receive.  

Together, understanding your medical condition and what matters most to you will allow for the best guidance and recommendations from your doctor. A person with advanced chronic conditions or advanced cancer who has a more limited prognosis to begin with—and who values their functional independence and dignity—may very well wish to forgo harsh heroic treatments that might not work regardless. A person with less burden of chronic illness may be willing to endure more, or perhaps not. 

I think it is very important to recognize that this is not about planning to die. Rather, it is deciding how you want to live. 

The final step is making a proactive plan. Based on your medical situation and your values, determine a proactive plan with your doctor.  

Decide whom you trust to make decisions on your behalf if you are unable to speak for yourself. Discuss your situation and your wishes with loved ones. 

Put your wishes in writing. Advance care planning documents provide guidance and specific direction on how you want medical decisions made if you cannot speak for yourself.

Think about your medical condition and other concerns. You may want more aggressive interventions now, but what if you develop severe dementia? Advanced cancer? Experience a debilitating stroke? Require 24-hour institutional care? Would you want the same aggressive interventions understanding it would not change these permanent conditions and likely lead to more debility? Or would you want to maximize comfort, avoiding invasive therapies, and focus on quality of life?

Help through the advance-directive process is available from highly experienced organizations. Please see the resource list below. Often, your doctor’s office can help you complete these forms, including the required doctor’s signature on a MOLST form. Once you prepare your advance directives, make sure your health care providers and loved ones know of them, know where to find them and, when appropriate, have copies.

Care team collaboration

In any health care setting, the care team’s goal is to make sure the patient is steering the ship. In the shared decision-making model we use, everyone brings their information and perspective to the table. The patient participates to the extent of their ability. The patient’s family brings their own insights, concerns and worries. Medical practitioners provide information about the clinical scenario and probable outcomes. We work together to base our care on the patient’s own wishes and outcome goals.

With COVID, this process is more complicated and pressured. The patient might be in severe distress. Once ventilated, he or she is sedated and cannot speak. Visitor restrictions mean that family conversations with the clinical team take place over the phone. The scenario we dread, frankly, is having to decide whether to intubate when a patient is alone and cannot communicate, has co-morbidities that make a positive outcome very unlikely—and we don’t know what that person would want for themselves. 

Proactive planning and advance directives (living will, health care proxy, and MOLST) inform us about what type of treatment that person would choose. Intubating a COVID patient is risky for the person inserting the tube, who must come in close physical proximity to virus-laden particles. To take that risk on behalf of someone who would not want to be on a ventilator is something best avoided. Rather than performing this invasive treatment, the focus would shift to care that maximizes comfort and support, and minimizes suffering and distress.  

In summary: Know your medical condition, share your values and what matters most to you, and collaborate with your care team (doctors, nurses, family and caregivers) to have a proactive plan documented and communicated to those who need to know.

These are difficult issues to confront. They weren’t created by COVID, but the virus has raised awareness of them in ways that create an opening now to make sure that if you ever can’t speak for yourself regarding health care decisions, your wishes will be known and respected.

Adam Herman, M.D., HMDC, is director of palliative care at Rochester General Hospital. 

RESOURCES

Advance care planning documents

■ A living will provides guidance and direction on preferences for care. However, this document provides guidance only, and the best way to make sure it is incorporated into medical decisions is to designate a health care proxy.

■ A health care proxy is a legal form that allows you to select a person and an alternate to make medical decisions on your behalf if you cannot speak for yourself. Without a health care proxy, New York public health law would determine the most appropriate medical surrogate-decision maker.

■ Finally, a MOLST form (Medical Orders for Life Sustaining Treatments) can be completed with your doctor. Health care providers must respect the medical orders outlined in this form. Essentially, it ensures that your wishes and preferences for care are respected. Without this or a do not resuscitate (DNR) medical order, state law demands health care providers initiate cardiopulmonary resuscitation if indicated. 

On the MOLST form there are some terms you should understand:

• Cardiopulmonary Resuscitation (CPR order) means, if your heart stops (cardiac arrest), CPR, electric shocks, emergent cardiac medications, intubation and ventilation, and hospitalization would be performed to prolonging life regardless of the burdens of treatment.
• Do not resuscitate (DNR order) means, if your heart stops, CPR and artificial ventilation will not be initiated; every effort to ensure your comfort would be employed and providers would allow a natural death.
• Do not intubate (DNI order) means, if you still have a heartbeat and your lungs are failing, care would be maximized to relieve shortness of breath and cough using medication and oxygen, but a breathing machine (ventilator) would not be used. If you wish to undergo CPR, you may not have a DNI.
• A trial ventilation order means, if you still have a heartbeat and your lungs are failing, you would accept a trial period of mechanical ventilation but would not want long-term ventilator support. Some might say they want a trial of a week or two but not want a tracheostomy to continue ventilation for a longer period of time.
• A long-term ventilation if needed order means you would accept intubation, ventilation and tracheostomy placement with long-term machine support, regardless of your mental/cognitive condition.

Other resources

■ LifetimeCare Home Health Care & Hospice: Advance Care Planning.

■ Excellus has partnered with CompassionandSupport.org to provide resources to plan for end-of-life care.

■ New York State Attorney General’s Office: Advance Directives: Making Your Wishes Known And Honored. New York State also provides the Medical Orders for Life-Sustaining Treatment (MOLST) form, filled out by health care professionals to spell out the wishes of very sick patients regarding life sustaining treatments including resuscitation and intubation.