The healthcare surrogate’s role in the time of Covid-19

Healthcare surrogates are always important, but their role has become more difficult during the Covid-19 pandemic, largely because hospitals, doctors, nurses, and other institutional caregivers are overwhelmed by the number of patients and the protocols needed to protect those healthcare workers and their patients.

In normal times, healthcare surrogates (also called medical agents, proxies, and other similar names) have a role to play when those who appoint them become unable to make healthcare decisions for themselves.  This can occur in three primary situations:

1.  The patient becomes permanently mentally incapacitated

2.  The patient swings back and forth between competency, mental confusion, and incompetency

3.  The patient is under sedation and cannot make decisions

Wisconsin law has an easy-to-understand definition of incapacity:

the inability to receive and evaluate information effectively or to communicate decisions to such an extent that the individual lacks the capacity to manage his or her health care decisions.

Duties of a healthcare agent

When a patient is incapacitated, the duty of a healthcare agent is to direct treatment decisions based solely on what the patient would want were the patient able to make decisions. 

It is not their role to substitute their judgment for that of the incapacitated patient.

In general, healthcare agents have authority to make any and all decisions a patient would make for themself, if able to do so, including–

1.  Receiving the same medical information the patient could receive

2.  Conferring with at least one member of the medical team

3.  Reviewing the patient’s medical records

4.  Asking questions and getting explanations from treatment or care staff

5.  Discussing treatment options and being fully informed about them

6.  Requesting consultations and second opinions

7.  Consenting to or refusing medical tests or treatments, including life-sustaining treatment

8.  Authorizing a transfer to another physician or institution, including another type of facility (such as a hospital, skilled nursing home, or residence, often with hospice providing palliative care)

Usually, the most difficult decisions concern the beginning or stopping of life-sustaining treatments.  If a patient is dying from the coronavirus, the best choice for some may be aggressive palliative care.

What happens to medical decision-making during the Covid-19 pandemic

The coronavirus pandemic in the US is making the role of the healthcare agent very difficult to fulfill.  Once a patient with the coronavirus is admitted to a hospital, no one but medical staff has access directly to the patient.  The staff may be so over-worked that contacting staff by phone may be difficult or impossible.  Reports are that many staff are working twelve-hour shifts, often without adequate protective equipment and supplies.

If a patient’s condition becomes critical, the decision to put them on a ventilator may have to be made within ten minutes or the patient will die.  This means that a healthcare agent must be available by phone at all times to consent to the ventilator decision or reject it, depending on the wishes of the patient expressed before or at the time of admission to the hospital, assuming that the patient is not competent at the time. 

Some medical professionals have reported that 86% of people with the coronavirus who are placed on ventilators die.  It is likely that this is because those going on ventilators are the sickest patients.  Whatever the reason, it is important to know a patient’s wishes about being placed on a ventilator before facing that decision.  Many of those placed on ventilators who survive have months of recovery time and many never fully recover to the health they once enjoyed, usually because of the damage done to their respiratory system.

A healthcare agent must also know that the patient was fully informed of the outcomes expected from being placed on a ventilator if the patient made known a decision while still competent.  An agent should learn what information about intubation was provided to the patient.  If no information about the use of a ventilator was provided to the patient, the agent must rely on the more general decisions the patient had made previously and made known to the agent.

One of the most tragic effects of this pandemic is that personal access to patients in healthcare facilities–hospitals, rehab facilities, assisted living centers, nursing homes, jails, and prisons–is not available for family, friends, and healthcare agents.  There are reports of nursing homes with bodies piling up without adequate space in designated holding facilities.  Circumstances may be so chaotic that families could not receive word of a death for days or weeks in some cases.

Under these conditions, it may be impossible for a healthcare agent to perform some or all of the eight responsibilities listed above.  And what happens when the healthcare agent becomes sick with the coronavirus or any other malady?  The responsibilities will not be fulfilled unless the patient has named an alternate healthcare agent, who will still be faced with the sometimes insurmountable obstacles discussed.

If an agent can’t fulfill expected responsibilities because of difficulty in contacting medical staff, it may be possible to receive assistance in communicating through a hospital or nursing home social worker, chaplain, or administrator, who can facilitate communications.  Communication should always follow the coronavirus protocols.  Healthcare agents should not give up trying to get the vital information they need to fulfill their duties to the patient.  Their best effort is all anyone can expect.

An alternative to a traditional advance directive

One option that might avoid placing a healthcare agent in an impossible situation during this pandemic has been suggested by Thaddeus Pope in a recent discussion among medical, legal, and bioethics professionals.  He begins by considering the content of an advance directive: 

Some older or seriously ill individuals might want CPR, mechanical ventilation, or ICU care, if it were available. But under surge conditions, they would prefer that scarce resources instead go to others. To achieve this goal, you should take these four steps:

1.  If you have decision-making capacity, you may refuse treatment on your own behalf. Health care providers must always honor refusals by capacitated patients.

2.  In case you lack capacity at the time you need hospitalization, document your preferences now in an advance directive. Advance directives are always conditioned on the existence of certain situations. So, be clear that you decline interventions only when beds or resources are needed for others [if that is your choice].

3.  Appoint a strong health care agent whom you trust to enforce your advance directive.

4.  You may want to supplement your advance directive with a POLST (Physician Orders For Life-Sustaining Treatment). Unlike an advance directive, POLST is immediately actionable and more likely to be honored. But if your preferences were specific to the surge situation, you should revise your POLST after the pandemic.

What to do now

There are four actions that can be taken before falling sick or becoming incapacitated:

1.  Complete an advance directive appointing a healthcare agent or surrogate, along with one or more alternates.  For a discussion of this process see this site and this site.  For copies of state advance directives see this site. 

2.  Read more about the use of ventilators here and here before deciding whether and under what conditions you want to have one used for your treatment.

3.  To help decide about the use of a ventilator, use this decision form or a similar form to be added to your advance directives and given to your healthcare agent.

4.  Talk to your treating clinician about a POLST, if appropriate.

Now is the time to make known your healthcare wishes to your healthcare agent and alternate healthcare agent(s), as well as your family.  In the worst of circumstances, neither you nor your agent may be able to make known your wishes if you become ill with the coronavirus, but not having an advance directive and a healthcare agent will certainly make it impossible for your wishes to be known and implemented if you are incapcitated.

Keep following the protocols:  keep physical distancing, wear a mask, disinfect or wash your hands for 20 seconds after touching surfaces or objects that may be contaminated with the virus, and don’t gamble with this virus.  It can be deadly at all ages and in all physical conditions.