FAQs for Guardians During COVID-19 Part 3: Protecting Rights, Well-Being, and Medical Decisions
Updated: Jul 20, 2020
During the COVID-19 pandemic, many who are acting as guardians have important questions as to how the pandemic impacts their responsibilities. An FAQ list has been put together to address these questions. While the list is not all inclusive, it contains answers to some of the commonly asked questions from guardians during this pandemic.
This FAQ list, copied verbatim below, comes from a collaboration between the National Guardianship Association, the American Bar Association Commission on Law and Aging, and the National Center for State Courts.
This is the third part in a series taken from the FAQ list provided. Part 3 addresses frequently asked questions under these topics: "Protecting the Rights and Well-Being of My Clients or Loved One" and "Protecting the Medical Decisions for My Clients or Loved One."
You can read part 1 discussing frequently asked questions under these topics: "Contact with My Clients or Loved One," "Access to My Clients or Loved One in Nursing Homes," and "Access to My Clients or Loved One in Residential Group Settings and Hospitals."
You can read part 2 discussing frequently asked questions under these topics: "Protections and Services for My Clients or Loved One in the Community" and "Access to Courts."
You can read part 4 discussing frequently asked questions under these topics: "Protecting the Finances of My Clients or Loved One" and "Safety Precautions."
Protecting my Client’s or Loved One’s Rights and Well-Being
Does COVID-19 affect my client’s or loved one’s rights as a person with a guardian?
NO. The rights your client or loved one has as a person with a guardian have NOT changed. But the COVID-19 pandemic will make it more difficult to exercise certain rights. For example, it will be difficult, if not impossible, to arrange for visits with friends and family (see next question). Or, if your client or loved one wants to ask the judge for a change in the court order or termination of the guardianship, an in-person hearing may be delayed, and remote access to court may not be an option.
Should I stop my client or loved one from interacting with others?
If the interaction puts the individual and others at risk and it is not possible to facilitate interaction according to social distancing regulations, you may have to seek a court order restricting visitation. You must also be aware of whether other individuals are visiting your client or loved one against their wishes. This is a hard question because your client or loved one may suffer without person-to-person contact. You can try to explain that enforcing this separation was not your decision; you are following the state’s social distancing rules. Share a plain language resource such as COVID-19 Information By and For People with Disabilities from the Self-Advocacy Resource and Technical Assistance Center (SARTAC).
I am concerned my client or loved one won’t receive fair health care treatment because she or he has a disability. What can I do?
Your client or loved one’s civil rights, including the right to fair medical treatment, have NOT changed. The U.S. Department of Health and Human Services (HHS) Office for Civil Rights has released guidance for states and health care providers on avoiding disability-based discrimination during COVID-19. Health care professionals must provide effective communication to the patient to ensure the patient maintains autonomy and ability to participate in treatment decisions. The hospital should allow for accommodations that involve the support of another individual if safety precautions are in place. If you are concerned about disability discrimination in health care treatment, including rationing of health care resources, contact the hospital patient advocate, hospital counsel, or ethics committee. For more information see Applying HHS’S Guidance For States and Healthcare Providers on Avoiding Disability-Based Discrimination in Treatment Rationing. For a briefer summary, see Safeguard Against Disability Discrimination during
COVID-19 by the Center for Dignity in Healthcare for People with Disabilities.
How can I check if a residential facility or a nursing home is following practices and protocols to protect my client or loved one?
Ask the facility to share memos or documentation on plans for preventing and controlling COVID-19. The facility should have a plan for frequent communication with residents and family about conditions and individual updates. Nursing homes are required to inform residents and their representatives (including guardians) about COVID -19 infections and steps they are taking to prevent or reduce the risk. Contact your client or loved one and staff as often as you can. If possible, request that your client or loved one has a private place to talk to you. Ideally request video conferences so you can observe your client or loved one.
What can I do if I am concerned about a nursing home’s infection control practices or other issues?
Nursing home residents still have the right to receive necessary care and services, participate in developing and implementing a person-centered plan of care, be free from abuse and neglect, and voice grievances without fear of retaliation. Assisted living residents should have similar rights under state law.
Share concerns with the director of nursing or administrator and request a response. File a complaint with your state survey agency. See the CMS 2019 Directory of State Survey Agencies. For more information, see COVID-19 and Nursing Homes, What Residents and Family Need to Know from Consumer Voice.
Contact the long-term care ombudsman program for assistance. Under the Federal Guidance, ombudsmen are not permitted to visit nursing homes, and are likely restricted from making visits to other facilities under state policies. However, you can file a complaint with the ombudsman program, and the program can at a minimum access the resident’s clinical record. Consumer Voice has more information at
What can I do if I am concerned my client or loved one is being abused, neglected, or exploited by a housing or service provider, individual, or facility?
Every state has different COVID-19 protocols in place for adult protective services (APS) and law enforcement. Report concerns as you would have prior to COVID-19 and inquire whether you should expect a delay or change in the agency’s or officer’s response. See Adult Protective Services and COVID-19 from HHS’s Administration for Community Living.
My client or loved one is demonstrating anxiety, depression, and other concerning behaviors. What can I do?
If your client or loved receives mental health, substance abuse, or any other kind of therapy, check whether you can make a virtual appointment with their mental health treatment provider. If your client or loved one resides in a supervised living arrangement, such as a nursing home, assisted living or other congregate setting, confirm with staff that he or she is regularly receiving any previously prescribed psychotropic medications. The Substance Abuse and Mental Health Services Administration (SAMSHA) offers several COVID-19 related resources.
My client or loved one does not understand why life has changed in response to COVID-19. How can I explain current events?
Consistent and clear communication is important. Try different forms of communication, including phone calls, videoconferencing, pictures, and letters. Be prepared to repeat this explanation multiple times. Share a plain language resource such as COVID-19 Information By and For People with Disabilities from the Self-Advocacy Resource and Technical Assistance Center (SARTAC). For a client or loved one with dementia, see Coronavirus (COVID-19): Tips for Dementia Caregivers by the Alzheimer’s Association.
How can I address my client or loved one’s feelings of isolation and loneliness?
There are many resources for connecting individuals during a time when people may feel terribly disconnected. However, often these suggestions -- from virtual museum tours to telehealth appointments -- require Internet access. Many individuals with guardians may not have Internet access or may not know how to use a computer or smart phone.
Ask facility staff to assist your client or loved one in setting up a videoconference call. If your client or loved one lives alone, can you drive by their house at an arranged time and talk to them from a distance? Are there friends and family who could arrange a similar check in while following social distancing rules? Consumer Voice has ideas on maintaining contact from a distance at COVID-19 and Nursing Homes, What Residents and Families Need to Know.
I have been appointed guardian for a new client or for a family member. How can I fulfill my duties?
Even if you are unable to visit the person for whom you are a guardian, there are many things you can and should do. Refer to The Fundamentals of Guardianship: What Every Guardian Should Know, as well as the NGA Standards of Practice.
For guardians of the person:
1. Conduct a needs assessment through phone and/or video conference conversations with your client or loved one and service providers, caretakers, family members and any other individuals who may be able to assist. Review medical or service providers’ records. Topics to inquire about include:
Current living arrangement
Stability of living arrangements
Potential health risks due to COVID-19 in the current living arrangement, including risks to any caretakers
Plans for a backup guardian
Current contact information, including alternate contacts and contact information for a backup or standby guardian
Continuing availability of necessary in-home services (if applicable)
Appropriateness of current services/need for services
2. Conduct a functional assessment by talking to the person for whom you are guardian and the caretakers by whatever means are available. Topics to inquire about include:
Ability to perform activities of self-care, with support
Ability to make decisions, with support
Existence of advance planning documents
Monitor medical status
Ensure that there is a care plan and monitor it.
Maintain regular communication by video chat or phone, if possible.
Make an immediate report to the court if you discover urgent or critical issues that the court needs to consider.
For guardians of property/conservators:
Develop an inventory of assets.
Have mail forwarded to you.
Apply to be appointed representative payee (Social Security Administration) or federal fiduciary (VA) if the person is receiving benefits.
Make an immediate report to the court if you discover urgent or critical issues that the court needs to consider.
See the section on "Protecting My Clients’ or Loved One’s Finances" (in a separate blog post, Part 4)
My client or loved one has died from COVID-19. What are my responsibilities as the guardian?
Immediately inform all family and friends who are entitled to know of the death.
Share with the family all information about any pre-need plans you have arranged.
Check your state laws for guidance as to your authority or responsibilities concerning the disposition of the body and carrying out any funeral arrangements. Check for any directives from the individual.
Follow state requirements for promptly notifying the court of the person’s death, such as providing a copy of the death certificate.
File your final personal status report and/or final accounting. The court will not discharge you until you have filed them.
Petition the court to terminate the guardianship. Your guardianship is not terminated until the court has entered an order ending it.
Consult with your attorney about the proper way to disburse any guardianship funds to the personal representative.
Do I need to have a back-up plan if I should need to self-quarantine, become ill, or otherwise temporarily unable to carry out my responsibilities?
Yes, you should have in place a backup plan for who is going to take over your guardianship responsibilities if you should become unable to do so. The steps you need to take depends on your state’s laws. Some states provide for the court’s appointment of a “stand-by” guardian to step in when a guardian can no longer serve. For example, see the Florida statutory provision for appointing a standby guardian and Maine’s provision for appointing a successor guardian.
If you don’t have a plan in place and suddenly become unable to carry out your responsibilities, notify the court promptly, so the judge can order a temporary substitute.
Protecting my Clients’ or Loved One’s Medical Decisions
I have been supporting my client or loved one to make his or her own health care decisions. How can I continue to do so effectively during this pandemic?
Continue to talk with your client or loved one about health care choices, and what is most important to him or her if faced with serious illness.
Explain what social distancing means and why it is important to practice safety in the face of this serious illness. Explain what quarantine means if the person may be subject to quarantine.
Talk to your client or loved one about end of life preferences, particularly in light of the current pandemic. One’s wishes during the pandemic may be specific to this particular coronavirus and may not apply in “normal” times. The discussion of end of life preferences could include interventions such as ventilators and dialysis, and their benefits and burdens in the context of COVID-19 and your client or loved one’s health status.
Does your client or loved one have a living will, health care power of attorney, or other documentation of what he or she would want? Don’t wait to address this until he or she becomes sick. Depending on your state’s laws and executive orders, your client or loved one may be able to fulfill any requirements for witnesses or notarization remotely. If executing a witnessed or notarized formal document is not feasible under the circumstances, any thoughtful documentation or recording will likely still be honored.
If your client or loved one gets sick without having the opportunity to discuss these issues, let his or her known health care statements, actions, values and preferences guide your decisions. Think about past patterns and decisions when making choices.
Refer to the NGA Standards of Practice for further guidance in making health care decisions.
How do I establish contact with and respect for my health care decision making authority with nursing home and hospital personnel?
Assuming your court order gives you authority to make health care decisions, including end-of-life decisions, give a copy of the court order appointing you as guardian to every health care provider currently treating your client. Each new health care provider or health care setting may need a copy of the court order.
If you are the health care decision-maker, politely explain to health care providers and the client’s family the decisions for which you are responsible and accountable.
When a treatment decision is needed, seek as much information as possible from treating health care providers about the nature of your client’s or loved one’s condition, the treatment options with their risks and benefits, the prognosis, and likely outcomes of treatment.
If your client or loved one has a valid health care power of attorney appointing someone else as health care agent, discuss his or her situation and wishes with the agent in light of the pandemic.
If it is unclear who has authority to make health care decisions, or you have a conflict with the health care agent selected by your client, seek guidance and clarification from your lawyer or the court.
Health care providers are likely to listen to input from everyone who has a relationship with their patient. Providers often work to understand all points of view and to seek common ground. Even when you have the final decision-making authority, remember that your client’s or loved one’s situation affects others and seek consensus and mutual respect.
How do I make sure my client’s or loved one’s end-of-life preferences are honored?
Make sure your client’s or loved one’s wishes are documented and included in the medical record. In addition, reach out in person, by phone, or video to make sure that your client’s wishes are known to every health care provider.
You may need to seek a court order authorizing you to make end-of-life decisions on behalf of your client or loved one. Check state law and the order naming you as guardian to see whether you need additional court action.
If your client would prefer hospice or palliative care, and you believe it is appropriate, explain those preferences to health care providers and consider their input.
POLST orders (Physician Orders for Life Sustaining Treatment, known by different names and acronyms in different states) are portable medical orders for persons with advanced illness or frailty to ensure that their critical care wishes are known and respected across care settings. If your client or loved one is seriously ill, discuss with health care providers if it is appropriate to consider these orders and how to create them in your state.
Explain to family and friends the wishes of the person, the current health care conditions and options with a goal of building consensus.
In some circumstances, you may consent to the withholding or withdrawal of medical treatment from your client or loved one. While the presumption is always in favor of continuing treatment, the NGA Standard of Practice 15 states that guardians shall honor the expressed wishes of the person regarding withholding or withdrawing treatment. If your client or loved one has previously expressed preferences that differ from current statements, consult an ethics committee and, if necessary, seek direction from the court.
I have heard that some hospitals are considering entering DNRs for anyone with COVID-19 who is elderly and/or has a chronic condition. What can I do about this?
In some states a DNR order cannot be entered without consent from the patient or the patient’s representative. Ask what the provider is planning and be a part of the decision.
Clarify what your client or loved one would want and what is consistent with his or her health care values and priorities. If not known, their best interests should guide your decisions, taking into account everything you do know about their values and priorities.
If you become aware of imposition of DNR orders against the known wishes of your client or loved one - – or any other disability discrimination in medical treatment -- object to hospital counsel, ethics committee, or patient ombudsman. The U.S. Department of Health and Human Services (HHS) Office for Civil Rights has released guidance for states and health care providers on avoiding disability-based discrimination during COVID-19. For more information, see Applying HHS’s Guidance For States and Healthcare Providers on Avoiding Disability-Based Discrimination in Treatment Rationing.
If my client or loved one needs to be quarantined or confined in a separate facility or wing of a facility, what should I do?
Try to explain to your client or loved one the necessity of the quarantine and seek to communicate as often as possible during the quarantine to reassure them that their welfare is your primary concern.
If you have a choice of placement, review the health care facility’s policy when choosing a placement (some facilities are creating policies that differ based on age, others are grouping all adults in the same category).
CMS has issued guidance on transfers within and between nursing facilities during the pandemic. The guidance may impact your client or loved one’s ability to challenge a transfer.
Can I consent if a doctor offers experimental medical treatment for my client?
Your client or loved one may be a candidate for a new and experimental treatment for COVID-19. In some states, a guardian cannot consent to experimental medical treatment without a court order.
If your client’s doctor recommends or suggests experimental treatment, consider the factors outlined in NGA Standard of Practice 14, Decision-Making about Medical Treatment, and review the following questions: would such treatment align with your client’s known wishes and preferences? Does your client’s advance directive or medical power of attorney contain directions regarding experimental treatment? If you cannot ascertain your client or loved one’s wishes, would consenting to the treatment be in his or her best interests?
If you conclude that your client should have treatment and you do not have the authority to consent, immediately seek a court order and emergency hearing if necessary, seeking authorization of treatment.