Making time for patient advocacy is more important now than ever

“Time is generally the best doctor,” according to the Roman poet Ovid. But these days, in the middle of the pandemic, what doctor has time?

Health care professionals already have 29-hour days. In many places, hospitals are at or near capacity because of Covid-19 cases. Some hospitals and staff are functioning in crisis mode; chaos reigns, particularly in areas where the surge came on suddenly.  As a result, clinicians are stretched and stressed to their limits as they contend with many unknowns and shifting guidelines about the best way to manage the disease.

Health care workers are increasingly burdened by capacity limits, extra shifts, constant use of personal protective equipment, and ever-changing protocols as well as coping with sicker patients in surge areas.

And to add to all that: To protect patients and staff, quell further contagion and streamline efficiency, many centers are not allowing visitors. This contrasts with the pre-COVID era when families or close friends could serve as personal advocates, prepared to intervene for patients who could not speak for themselves, and contribute to the care and wellbeing of their loved ones.  Just when patients need it most, personal advocacy is least available.

In the best of times (and these are certainly not), all patients need advocates all the time; now more than ever, vulnerable patients need them more but don’t have access to them.  Vulnerable populations have more at stake when visitors are limited or prohibited. What’s more, vulnerability may be exacerbated due to youth, advanced age, disability, cognitive impairment, illness acuity, language – or, as we have come to realize of late – implicit bias.

Advocacy can take many forms. For the patient who cannot report accurately on their medical history and symptoms, the furnishing of information to health care professionals can speed accurate diagnosis and minimize test and imaging fishing expeditions.  Personal advocates, when present, may provide comfort and be a conduit to nursing staff when pain is present, and other physical needs are unmet.

Equally important, vigilant personal advocates can be instrumental in offsetting nursing responsibilities by feeding and mobilizing patients, preventing falls, and even initiating rapid response codes.  Finally, for patients limited by expressive disorders or constraints, the personal advocate can inform staff about individual preferences, priorities, and values, so that goals of care are aligned with patient wishes.

Given the great uncertainties about therapies and medication in managing Covid-19 and the wide-ranging ways in which the disease is manifest, pre-existing conditions take on increased relevance. For the patient who cannot speak up on their own, the information supplied by a family member or other personal advocate can be the critical link to assist the clinician in rapidly addressing the patient’s needs and reducing the risk of adverse events.

There is a clear and needed role for primary care providers to help patients and their families prepare for the eventuality of admission. For example, the community physician can encourage the preparation of a full portfolio of documents for a “what-if scenario,” including:

  • Full medical history
  • Recent laboratory and imaging results
  • Current medications
  • Specialist and pharmacist contact information
  • Advance directives
  • Health care proxy
  • Physician’s (or Medical) Order for Life-Sustaining Treatment
  • Do not resuscitate or intubate orders

Such advance planning can create a safety net that is readily available to inform decisions and guide care.

From the hospital side, attending physicians and specialists of hospitalized patients would reach out to the patient’s family, close friend, or primary care physician to gather information.  Given the current urgent situation in many localities, other health care professionals such as nurses, residents, physician assistants, nurse practitioners, medical students, or social workers could assist with gathering useful background information.  Nursing staff, in their frontline communication and liaison roles, are instrumental in working with the team to implement relevant findings.

Technology in its many forms can help facilitate communication when personal advocates cannot be present. Their input can save time by providing critical medical history that can help improve outcomes, reduce readmission risks, and increase the probability of successful home convalescence.

Never has the input of family or other personal advocates been more important as providers and administrators grapple with so many previously unknown factors. The better the communication and information sharing, the better the care and outcome for the patient and the better the results for the health care professionals who treat them, and don’t want to see them back.

Sara L. Merwin is the co-author of The Informed Patient: A Complete Guide to a Hospital Stay. Bonnie Friedman is the author of Hospital Warrior: How to Get the Best Care for Your Loved One.

Image credit: Shutterstock.com

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