Guest blog by John T. James, PhD
Introduction by Michael F. Mascia, MD, MPH
Thanks to you, John James for being with us and for helping us to achieve best health and health care during the COVID – 19 (C19) Pandemic . Yes, life goes on and your new and preexisting ailments don’t care about this pandemic. Some of the ailments can not wait. Yes, you need best health and health care in the here and now. How can you get safe, effective and cost effective health and health care care despite the C19 pandemic? Below is John’s take on the subject. I will soon add a few points and a checklist from my “C19 Act on Fact” view as a patient and physician.
For now, please continue your preventive strategies, avoid the C19 hot-spots and know that most of your health and health care problems can be addressed via telephone, or telemedicine. I suggest you line up a reliable physician partner who can help you with telemedicine ASAP. Have questions? Need help? Want to help? Please contact me. MFM
Informed Consent During The C19 Pandemic by John T. James, PhD
Stress on the health care system during the pandemic presents special problems with patients acquiring sufficient information to make truly informed decisions about their medical care. Informed consent centers on shared decision-making between clinician and patient in which the knowledge of the professional is considered alongside knowledge of the patient’s wishes. Reasonable patients want far more information than is typically given when an invasive procedure is under consideration or an off-label drug may be tried. Moreover, best practices are changing rapidly, so patients must be aware that caregivers may not be current on these. None-the-less, they should strive to have a trusted physician partner to help manage care when COVID-19 is suspected. What should patients do to acquire the information they need to make informed decisions in times of a pandemic?
- The first step is to avoid needing hospitalization if possible. This means thinking twice about whether to appear at an emergency room. Seek the advice of your primary care doctor, carefully noting your symptoms and their duration. Get yourself tested for COVID-19 if your symptoms are consistent with that disease. If positive, be prepared to name those whom you have been in contact for the past few days. Contact tracers are likely to ask you about this.
- If you must have hospitalization, find an assertive advocate to assist you in dealing with the stressed-hospital situation. If you do not have COVID-19, ask how you will be isolated from those who do. Ask about how caregivers in the hospital are protected from exposure to COVID-19. Hospitals that protect their workers are more likely to protect patients.
- Decision aids are available for specific circumstances. For example, one decision aid deals with whether a person should remain in an assisted-living facility (). This will depend on alternative living situations if you leave the facility, whether you may return once the pandemic is under control, and how attentive the assisted-living facility is to infection control. For-profit facilities tend to be less attentive to the needs of residents and more attentive to their bottom lines.
- A key element of informed consent when overtreatment may happen is the advance directive. This may allow you to be treated at home when you do not want care in a hospital. Much of end-of-life care may be performed at home as part of hospice care. Professional caregivers should be available to ensure that your wishes are followed. Forms for medical advance directives are available from many sources, including the AARP.
- Do not be led into taking a drug that has no scientific evidence of efficacy. For example, hydroxychloroquine has been given to nursing home patients off-label despite the lack of demonstrated benefit. Subsequent peer-reviewed data have shown that this drug does little to help COVID-19 patients and has serious cardiac risks. On the contrary, Remdesivir, an anti-viral appears to show promise in preliminary studies. Be aware of the known side effects of any drug proposed to be administered to you. Drug treatments for COVID-19 are in rapid testing; an informed patient must have the latest information. Consult your trusted physician if the information you have is more than a week old, confusing, or may be incomplete.
- Another area of rapid change in the treatment of COVID-19 is the use of ventilators for serious cases. A decision aid has been developed for whether or not to use a ventilator or other life-support treatments for seriously ill COVID-19 patients. This may involve an advanced directive developed prior to COVID-19 medical care.
- The informed patient may also ask about plasma (convalescent plasma) treatment. As of early May, this seems to be the treatment of choice. Also, as of early May, there seems to be good news on antibody screening to determine exposure and potential for donating plasma.
In conclusion, the reasonable, at-risk patient must ask informed questions and expect informed answers from their clinician. Always ask how current the treatment information is, and to what extent the weight-of-evidence favors a specific treatment. Always ask the expected outcome if nothing is done. Many with COVID-19 infection survive with few, if any, symptoms.