Alexandra Snyder
In the wake of COVID-19, hospitals have enacted policies severely restricting patients from receiving visitors in order to prevent the spread of the virus. While limiting patient exposure to a potentially deadly virus is important, prohibiting visitation without providing accommodations for vulnerable patients has significant legal and ethical implications.
Draconian COVID-19 restrictions on hospital visitation not only deprive patients of time spent with loved ones; they also deprive patients of essential advocacy. Family members and friends often serve as zealous patient advocates for their loved ones.
In-person visits are especially critical for patients who are incapacitated or otherwise not able to speak. It is difficult for advocates to discern a patient’s condition and comfort level without spending time with them in the hospital. Moreover, patient advocates serve to facilitate communication between patients and health care providers to ensure that patients’ needs are addressed. For this reason, the Centers for Medicare & Medicaid Services (CMS) has issued guidance1 urging hospitals to allow in-person visits for particularly vulnerable patients, including those with chronic or prolonged illnesses, patients with cognitive or developmental disabilities, and patients who are receiving end of life care.
The American Bar Association reports2 that many health care providers hold negative views of disabled patients that compromise their care and treatment. Hospital visitation and patient advocacy are essential to protect patients from being denied medical care because of this pervasive bias.
Prohibiting visitation for vulnerable patients is tantamount to denying access to medical care and services. Federal laws, including the Americans with Disabilities Act, Section 1557 of the Affordable Care Act, and Section 504 of the Rehabilitation Act prohibit discrimination in federally funded health care settings, yet many hospitals have refused to accommodate the need for disabled and other vulnerable patients to have a patient advocate who can communicate their health care needs and ensure that they receive the same quality of care as other patients. These laws remain in full effect during COVID-19.
The demands placed on our health care system because of COVID are exposing a shift in our culture that values death over the protection of life. This can be seen in the use of triage provisions, in some cases not to assess the distribution of scarce resources, but to justify the withdrawal of medical care for critically ill patients. We do not deny the very real pressures on hospital staff in communities overwhelmed by COVID cases, but we have seen hospital administrators use triage as a rational for clearing ICU beds even when staff admits they have capacity for additional patients. In Los Angeles County, ambulance drivers have been instructed not to transport patients with a poor chance of survival, regardless of the actual availability of beds at local hospitals.
Tragically, many health care providers do not believe that human beings possess inherent dignity. They do not believe that we are endowed by our Creator with certain inalienable rights, preeminent among those being the right to life. Instead, they fight for the “right to die” and even the right to kill others who they perceive to be a drain on the health care system and whose capacity to contribute something of material value is in some way diminished.
So how can you protect yourself and your loved ones to ensure that you receive the treatment you need?
You need a written document that expresses your wishes in the event you should become incapacitated. This is called an advance health care directive.
Advance directives typically have four components:
1. Name a designated health care agent or proxy whom you authorize to make health care decisions on your behalf.
You will need to discuss your wishes in great detail with this person. Ideally, this individual will share your beliefs—but he or she should at least be very familiar with the specifics of the type of care you want to receive.
2. Specify what type of care you wish to receive if you become incapacitated through an injury or illness.
We encourage people to be very specific about the care you want in the event you can no longer make your own health care decisions. Please be aware that the default position of many health care providers is to withdraw or withhold care unless a patient has expressly stated that they wish to receive long-term treatment, including ventilator support and artificial nutrition and hydration.
3. Identify the extent of pain relief you would like to receive and whether you authorize pain relief drugs that may hasten your death.
Certain pain relievers and anti-anxiety medications can suppress breathing and cause premature death. This is known as “terminal sedation.” Often these drugs are used to mitigate pain at the very end of life, but we have seen cases where patients are heavily sedated even when they have not requested pain relief.
4. Provide instructions regarding the disposition of your organs and other body parts upon your death.
If you are a registered organ donor—through a check box on your driver’s license application or renewal—please familiarize yourself with the details of organ donation. Vital organs are typically harvested from patients who have been declared “brain dead,” which means they have suffered a profound brain injury but their hearts are still beating. Many people do not believe death can be determined solely on the basis of neurological criteria.
You can leave the decision regarding organ donation to your health care proxy to be made in real time rather than registering as an organ donor in advance. If you have changed your mind about being a registered organ donor, please be aware that you have to take steps to remove your name from the registry. These steps vary from state to state.
Finally, your advance directive must be properly signed, and in some states witnessed and notarized, in order to be legally valid. Please familiarize yourself with the signature requirements in your state. Provide your designated health care agent and your doctor with a signed and dated copy of your advance directive.
As soon your advance health care directive is duly signed and/or notarized, it is a legally binding document. If you change your mind about your designated health care agent or health care wishes, we recommend that you execute new advance directive and destroy all copies of the previous document.
Life Legal provides additional guidance on advance directives.
No one wants to believe that they could become incapacitated—even temporarily. But we urge you to take action to protect yourself and your loved ones.