Dying Alone: Why We Need to Prioritize Compassionate End-of-Life Care During COVID-19

As COVID-19 continues to smolder and flare around the world and across the U.S., hospitals are bracing for ventilators in short supply and drafting guidelines for the rationing of resources.[i] Federal and state governments are taking action to slow the spread of the disease. With unconscionably limited personal protective equipment, a lack of directed and successful treatment for the disease, and the ongoing risk to hospital workers, many hospitals have implemented no-visitor policies.[ii], [iii], [iv] Increasingly, this means that patients at the end of their lives, whether dying from COVID-19 or from something else, are often dying alone in hospitals and long-term care facilities.

On the oncology service during my third year of medical school, I witnessed with heart-wrenching frequency discussions of end-of-life preferences and prognostications, conversations had with varying degrees of urgency, preparation, and success. Almost uniformly, close family and friends helped shape and balance theses conversations and acted as advocates for their loved ones. When translators are scarce or when nursing staff is stretched too thin, family and friends are essential for communication between patients and the care team. I have seen the impact of compassion and kindness from providers and the strength of support from loved ones. With the increasing illnesses that we will likely be seeing in the coming days, we cannot lose sight of caring as we provide care.

The goal of palliative care is to address and manage symptoms of physical, psychosocial, and spiritual suffering experienced by patients and their families. In addition to alleviating suffering, making decisions about quality of life and patient and caregiver goals are central concerns of palliative care. Palliative care teams are especially adept at managing symptoms, reassessing care, and supporting and communicating with patients and families.[v] They are uniquely qualified to help patients and families navigate confusing and distressing circumstances, all the more acutely needed amidst COVID-19.[vi]

In the uncertain setting of this pandemic, the end of life is coming suddenly and unexpectedly for many people.[vii] All of us, especially the elderly and those with serious underlying medical conditions, must talk about end-of-life preferences—Who do you want making decisions for you if you are not able to do so? Is invasive and aggressive treatment aligned with your goals?—and face this pandemic prepared to make difficult decisions.

For those concerned that end-of-life planning seems premature or a sensationalized response out of proportion to the current circumstances, consider that these conversations are almost always appropriate even outside of a pandemic. Certainly, circumstances and preferences change, but the healthcare system will always do patients a disservice if the people caring for them do not have an understanding of what kind of care they may want.

Though hospitals are shifting focus and resources to the COVID-19 response, people are also suffering and dying from cancer, heart failure, kidney disease, and other life-limiting illnesses. If rationing of ventilators and intensive care comes to fruition, these patients may not be a priority. Here again, compassionate discourse with patients and families about prioritizing comfort and reducing risks will be crucial.   

Public health proponents and all levels of government are working hard to try to stop the spread of the novel coronavirus and protect the public. For those who are already ill or who may become ill, we all have a duty to maintain the basic tenets of healthcare and provide for their comfort and dignity to the best of our abilities.

Around the world, non-medical facilities are being converted to care for COVID-19 patients.[viii] Italy and the UK have banned funerals, several U.S. states have followed suit.[ix] Hospitals have severely restricted visitation; some making exceptions for companions when the end of life is imminent, some instead trying their best to use technology to support families. Nursing homes and long-term care facilities have disallowed outside visits. Social media and public news outlets are overrun with stories of people saying goodbye to loved ones from afar. To add to the confusion and concern, policies vary day-by-day, facility-by-facility, state-by-state.[x] This is far from ideal.

Hospital policies and exceptions for visitations should be more uniform. Hospitals should allow one to two visitors, with requisite prescreening and provision of personal protective equipment, for patients approaching the end of life. For patients with family and friends who are also ill or who are otherwise unable to be at the bedside, every effort should be made to provide assistive technology to keep people in contact with their loved ones. Hospitals also must ensure that sufficient translators, patient advocates, and other support staff are present to take on the increasing demand. Nursing homes and long-term care facilities must have the capacity to manage increased comfort-care needs to ensure patient safety and reduce the need for hospitalization.

Hospitals and professional societies have been offering guidance on navigating healthcare decision-making in the setting of COVID-19; all providers, not just palliative care specialists, who are seeing patients virtually or in person should engage in advance care planning discussions with all of their patients. All of us should have these conversations with our loved ones.

In these extraordinary times, amid ever-changing recommendations, isolation, and overwhelming medical need, care and compassion must remain a priority. Palliative care services must be increased. Patients at the end of life must be allowed to have family or friends present, even if in a limited capacity. We can easily get lost in the numbers and in the incomprehensible demand for resources. In addition to all of the hardship of the last several weeks, we have also witnessed extraordinary kindness and support. We will come out on the other side of this pandemic; continued compassion and careful consideration will allow us to do so confident that our friends, families, and neighbors affected by these circumstances maintain their dignity, comfort, and humanity.


[i]  Muoio D, Eisenberg A. New York hospitals rationing ventilators, retrofitting equipment amid crush of coronavirus. Politico. April 2, 2020. https://www.politico.com/states/new-york/albany/story/2020/04/02/new-york-hospitals-rationing-ventilators-retrofitting-equipment-amid-crush-of-coronavirus-1270790

[ii] Visitor Policies, Brigham and Women’s Hospital. https://www.brighamandwomens.org/patients-and-families/visitors/visitor-policies

[iii] Coronavirus (COVID-19): Latest Updates. Massachusetts General Hospital. Accessed April 4, 2020. https://www.massgeneral.org/news/coronavirus/coronavirus-latest-updates#visitor

[iv] Kirby, H. No visitors allowed at ProHealth Waukesha and Oconomowoc Memorial hospitals and their NICUs (with specific exceptions).  Milwaukee Journal Sentinel. April 3, 2020 https://www.jsonline.com/story/communities/lake-country/news/oconomowoc/2020/04/03/coronavirus-covid-19-no-visitors-waukesha-oconomowoc-memorial-hospitals/2941935001/

[v] Rome RB, Luminais HH, Bourgeois DA, Blais CM. The Role of Palliative Care at the End of Life. 2011. Oschener J. 11(4):348-352

[vi] Ballentine JM. The Role of Palliative Care in a COVID-19 Pandemic.  CHCF Blog. March 20, 2020. https://www.chcf.org/blog/the-role-of-palliative-care-in-a-covid-19-pandemic/

[vii] WHO. Coronavirus disease 2019 (COVID-19) Situation Report-75. https://www.who.int/docs/default-source/coronaviruse/situation-reports/20200404-sitrep-75-covid-19.pdf?sfvrsn=99251b2b_2

[viii] Gold J. Wngerleider S. It’s Time to Get Serious About End-of-Life Care for High Risk Coronavirus Patients. Time. March 30, 2020. https://time.com/5812073/endof-life-coronavirus/

[ix] Kiley B. Funeral prohibited in Washington state in effort to slow coronavirus spread. The Seattle Times. March 19, 2020.

https://www.seattletimes.com/life/funerals-prohibited-in-washington-state-amid-coronavirus-fears/

[x] CDC. Coronavirus Disease 2019 (COVID-19): Clinical Guidance Accessed April 4, 2020. https://www.cdc.gov/coronavirus/2019-nCoV/hcp/index.html

Catch 2020: How some states are using the COVID-19 crisis to render abortion care impossible for constituents

Planned Parenthood, 2020

The phrase “never let a good crisis go to waste” has been an uncomfortably repetitive battle cry for public health-minded individuals in the wake of the Coronavirus outbreak. But it seems others, including anti-abortion activists and politicians, have also taken those words to heart. On March 18th, the federal government issued a nationwide recommendation for healthcare providers to put a hold on elective procedures, and states were left to interpret this recommendation independently [1]. Jumping on the opportunity, a number of states including Alabama, Ohio, Iowa, Oklahoma, and Texas were quick to demarcate abortion as an elective and non-essential procedure [2]. In response, a coalition of pro-choice organizations including the ACLU, Planned Parenthood, and The Center for Reproductive Rights have worked tirelessly to block these unconstitutional abortion bans [3,4]. Thus far, Alabama and Ohio directives have been rejected in federal courts. 

On the other hand, Texas has doubled down on the ban. On March 23rd, two days after Texas Governor Greg Abott issued an executive order stating that healthcare professionals must cancel or postpone all non-essential procedures, Texas Attorney General Ken Paxton issued a statement specifying that the executive order included abortion [5,6]. Even further, healthcare providers found in violation of the order face fines in the order of $1000 or 180 days of jail time. Despite federal Judge Lee Yeakel’s attempt to block the directive, specifying the ban would cause patients to “suffer serious and irreparable harm,” this ruling was issued a temporary stay by the federal 5th Circuit Court of Appeals on March 31st [7,8]. As of now, the Texas abortion ban is back in effect. Interestingly, I might add, the Attorney General also took the time to specify that gun stores were an essential business and may stay open during the pandemic. 

These bans are harrowing and stand to impose potential life-long implications for patients trapped in states restricting abortion access. Again, take Texas, where abortion is already banned after 20 weeks [9]. Let’s say a patient became aware of a pregnancy at 8 weeks, and then faced closed abortion clinics during the COVID-19 crisis for roughly 3 months. On the other side of this crisis, she could not legally obtain an abortion in the state of Texas. Ohio and Alabama similarly ban abortions at 22 weeks. 

In thinking about the abortion bans during the COVID-19 crisis, it was helpful for me to break down some of the main points why abortion should remain accessible to patients through a pandemic: 

The Legal Argument

Abortion is an essential healthcare right, a constitutional right, as established in the 1973 Roe v. Wade decision [10]. There, that was easy!

The Ob/Gyn Argument

The American College of Obstetricians and Gynecologists (ACOG) has spoken out regarding abortion during COVID-19, explicitly recommending that abortion procedures continue during the pandemic: “Abortion is an essential component of comprehensive health care. It is also a time-sensitive service for which a delay of several weeks, or in some cases days, may increase the risks or potentially make it completely inaccessible.” [11] Comparing pregnancy outcomes, we know that there is greater risk associated with carrying a pregnancy to term as opposed to abortion [12].

The Infectious Disease Argument

With regard to COVID-19, at present, we don’t know whether intrauterine maternal-fetal transmission is possible for the virus, and we do not know whether pregnant women are more severely affected [13]. Combine that with the inexplicable trauma of forcing someone to carry an unwanted pregnancy to term, and that is a distressing amount of risk. Pro-life organization Massachusetts Citizens for Life recently spoke on the issue of infectious spread and abortion to the Daily Caller: “Women’s health and safety should be our top priority now, as always… Risking exposure to the highly contagious disease during visits to abortion clinics not only puts our women at risk but their families, clinic staff, and their loved ones as well.” [14] Yet, the theoretical risk of COVID-19 transmission either via medication abortion (MAB) or through a 5-10 minute surgical abortion is far less than that of a vaginal delivery or c-section, which require significantly more time in a healthcare setting, not to mention countless pre-natal visits [15]. If these organizations truly cared about women’s health, they should rethink the abortion bans.

The Texas abortion ban will force the closure of 21 clinics serving 6 million patients [16]. As a result, The Guttmacher Institute estimated that the average distance an individual in Texas must travel to have an abortion will increase twenty-fold: from 12 miles to 243 [17]. Ultimately, abortion bans will force desperate individuals to seek abortion care outside of state, leading to increased travel in a time of shelter-in-place orders. The pro-life lobby’s justification of risk mitigation for spread of COVID-19 simply doesn’t stand: banning abortion may actually increase risk of viral spread.

The Economic Argument

In 2004, the Guttmacher Institute reported that 73% of women who’d had an abortion did so in part because they could not afford to have a baby then [18]. In a time of unprecedented economic upheaval, thrusting unwanted pregnancies on patients (many of whom have lost jobs and insurance) seems like a tremendously bad idea.

Medication Abortion and Telemedicine

These bans place undue burden on patients seeking abortion procedures for whom monumental barriers already exist—including requirements on pre-abortion counseling and wait periods, restrictions on Medicaid coverage, and TRAP laws imposing impossible stipulations for clinics to operate [19]. While medication abortions (MAB) via remote counseling seem like an obvious solution in the time of telemedicine, state laws prohibiting the use of telemedicine for MABs exist in the very states that patients need them most. 17 states require a physician to be physically present during a MAB, thereby blocking telemedicine-conducted medication abortions. Ohio passed such a ban in March of this year [20,21].

Abortion bans during COVID-19 come off as creepily opportunistic and exploitative of collective trauma and chaotic conditions for political gain. What is there to do in such times? We must continue to support organizations fighting these bans, including the ACLU, Center for Reproductive Rights, and Planned Parenthood. We must work hard to stay abreast of new restrictions to abortion access despite this time of weariness and uncertainty. We must remember those pregnant individuals trapped by paradoxical and unconstitutional regulations, reminding ourselves that abortion is an essential healthcare service. Finally, we must recognize the deepening of existing health and social inequities by these anti-abortion policies, and understand how they further stratify vulnerable patients in many states across the U.S.

References:

  1. Center for Medicaid Services. (March 18, 2020). CMS Releases Recommendations on Adult Elective Surgeries, Non-Essential Medical, Surgical, and Dental Procedures During COVID-19 Response. Retrieved April 1, 2020 from https://www.cms.gov/newsroom/press-releases/cms-releases-recommendations-adult-elective-surgeries-non-essential-medical-surgical-and-dental.
  2. Bazelon, E. The Coronavirus Becomes an Excuse to Restrict Abortions. (March 26, 2020). The New York Times. Retrieved April 2, 2020 from https://www.nytimes.com/2020/03/26/opinion/covid-abortion-ohio-texas.html.
  3. Smith, K. States facing legal challenges over abortion bans amid coronavirus pandemic. (March 30, 2020). CBS News. Retrieved April 1, 2020 from https://www.cbsnews.com/news/abortion-planned-parenthood-aclu-center-reproductive-rights-sue-states-coronavirus-covid-19-pandemic/.
  4. ACLU. (April 1, 2020). Joint Statement on Today’s Order from Johnson County Court. Retrieved April 4, 2020 from https://www.aclu-ia.org/en/press-releases/statement-todays-order-johnson-county-court.
  5. Executive Order GA 09. (March 22, 2020). Retrieved April 1, 2020 from https://gov.texas.gov/uploads/files/press/EO-GA_09_COVID-19_hospital_capacity_IMAGE_03-22-2020.pdf.
  6. Health Care Pro­fes­sion­als and Facilities, Including Abor­tion Providers, Must Immediately Stop All Medically Unnecessary Surgeries and Procedures to Preserve Resources to Fight COVID-19 Pandemic. (March 23, 2020). Retrieved April 1, 2020 from https://www.texasattorneygeneral.gov/news/releases/health-care-professionals-and-facilities-including-abortion-providers-must-immediately-stop-all.
  7. Federal Judge Blocks Texas From Closing Abortion Clinics During Coronavirus Outbreak. (March 30, 2020). CBS 11 News. Retrieved April 1, 2020 from https://dfw.cbslocal.com/2020/03/30/federal-judge-blocks-texas-closing-abortion-clinics-coronavirus/
  8. Hellman, J. Appeals court allows Texas to ban abortions during pandemic. (March 31, 2020). The Hill. Retrieved April 1, 2020 from https://thehill.com/policy/healthcare/490415-appeals-court-allows-texas-to-implement-ban-on-abortion-during-pandemic.
  9. Sundaram, A. Texas Senate removes exception that allows abortion after 20 weeks if the pregnancy is unviable. (May 7, 2020). The Texas Tribune. Retrieved April 3, 2020 from https://www.texastribune.org/2019/05/07/texas-abortion-law-allowing-procedures-after-20-weeks-removed-senate/.
  10. “Roe v. Wade.” Oyez, www.oyez.org/cases/1971/70-18. Accessed April 3, 2020 from https://www.oyez.org/cases/1971/70-18.
  11. ACOG. (March 18, 2020). Joint Statement on Abortion Access During the COVID-19 Outbreak. Accessed April 2, 2020 from https://www.acog.org/news/news-releases/2020/03/joint-statement-on-abortion-access-during-the-covid-19-outbreak.
  12. Raymond, E., and Grimes, D. The Comparative Safety of Legal Induced Abortion and Childbirth in the United States. June 2012: 119(6). Accessed April 4, 2020 from https://journals.lww.com/greenjournal/Citation/2012/06000/The_Comparative_Safety_of_Legal_Induced_Abortion.31.aspx.
  13. Rasmussen, S., Jamieson, D. Coronavirus Disease 2019 (COVID-19) and Pregnancy: Responding to a Rapidly Evolving Situation. (March 19, 2020). Accessed April 3, 2020 from https://journals.lww.com/greenjournal/Abstract/publishahead/Coronavirus_Disease_2019__COVID_19__and_Pregnancy_.97417.aspx?context=FeaturedArticles&collectionId=5.
  14. Olohan, M. Massachusetts Bans ‘Non-Essential’ Procedures like Colonoscopies, Knee Replacements, Allows Abortions. (March 19, 2020). Accessed April 4, 2020 from https://dailycaller.com/2020/03/19/massachusetts-abortions-nonessential-procedures/.
  15. Planned Parenthood: In-Clinic Abortion. Accessed April 5, 2020 from https://www.plannedparenthood.org/learn/abortion/in-clinic-abortion-procedures.
  16. Smith, K. Abortion patients in Texas now travel more than 20 times farther to receive care amid coronavirus ban, study says. (April 2, 2020). CBS News. Accessed April 5, 2020 from https://www.cbsnews.com/news/texas-abortion-patients-20-times-longer-care/.
  17. Guttmacher Institute. COVID-19 Abortion Bans Would Greatly Increase Driving Distances for Those Seeking Care. (April 2, 2020). Accessed April 3, 2020 from https://www.guttmacher.org/article/2020/04/covid-19-abortion-bans-would-greatly-increase-driving-distances-those-seeking-care.
  18. Finer, L., Frohwirth, L., Dauphinee, L., et al. Reasons U.S. Women Have Abortions: Quantitative and Qualitative Perspectives. Perspectives on Sexual and Reproductive Health. September 2005, 37(3): 110-118. Accessed April 4, 2020 from https://www.guttmacher.org/sites/default/files/pdfs/pubs/psrh/full/3711005.pdf.
  19. Guttmacher Institute. State Abortion Policy Landscape: From Hostile to Supportive. (August 29, 2019). Accessed April 4, 2020 from https://www.guttmacher.org/article/2019/08/state-abortion-policy-landscape-hostile-supportive.
  20. Donovan, M. Guttmacher Institute. Improving Access to Abortion via Telehealth. (May 16, 2019). Accessed April 5, 2020 from https://www.guttmacher.org/gpr/2019/05/improving-access-abortion-telehealth.
  21. Planned Parenthood. (March 4, 2020). Breaking: Telemedicine Abortion Ban Passed in Ohio Senate. Accessed April 5, 2020 from https://www.plannedparenthoodaction.org/planned-parenthood-advocates-ohio/media/breaking-telemedicine-abortion-ban-passed-in-ohio-senate.

It’s Time to Open the Black Box: How Surgical Data Recording Technology Can Combat a Culture of Blame and Save Lives

Everything had gone off without a hitch. The surgical team had attached the prosthetic tube to the femoral artery in the thigh and the popliteal artery behind the knee. Blood bypassed the arterial bottleneck and brought desperately needed oxygen to a starved leg. But our patient, stable through the whole operation, was suddenly cold. What had gone wrong?

The bair hugger is off.  The heated blanket, which kept the patient warm in the ventilated tundra of the OR, had somehow disconnected. The patient’s temperature had been drifting down long before her incisions were closed. How was the device dislodged, and why had no one noticed until now?

The surgical and nursing staff quickly inundated the patient in blankets, and after an hour of warming, the patient woke up from anesthesia with no complications. She would recover well over the next few days and be discharged home. But would we be so lucky the next time?

As a medical student on his first surgical rotation, I thought what I had seen was an isolated incident. But my colleagues had similar stories to offer. A blood pressure cuff malfunctioned through several surgeries before the problem was diagnosed. Surgical instruments were missing from the room. A bedside team had nicked the wrong blood vessel in a patient’s neck and bought them trip to the OR. It seemed that in spite of providers’ best efforts, mistakes continued to happen.

Medical error is the third leading cause of death in the US. Most of these errors are surgical in nature (Makary & Daniel, 2016), and over half are thought to be preventable.(Gawande et al., 1999; Makary & Daniel, 2016). Surgeons acknowledge these mistakes as well. In a recent survey, almost 1 in 10 surgeons conceded having made a major error in the three preceding months (Shanafelt et al., 2010).

Surgical error remains pervasive because we review mistakes retroactively. Picture the following: something goes wrong in the OR—a blood vessel is nicked and the patient bleeds, her blood pressure drops suddenly, a vital instrument is missing. The team moves quickly to correct course; if they do, then the error might be forgotten in the events of the day and go unreported. In fact, many state departments such as the Massachusetts Department of Public Health only require that “serious reportable events”—adverse outcomes that were a result of medical error—be acknowledged (Serious Reportable Event (SREs), 2009).

However, the team might not be successful, and the patient may develop complications requiring several more days in the hospital. If this is the case, the team files an incident report and discusses the case with the department at morbidity and mortality rounds. Compared with national statistical estimates, this strategy underreports complications and mortality (Hutter et al., 2006). What’s more, the precise events that happened are often unclear because of recall bias and lapses in detail (Hutter et al., 2006). This leaves providers to scratch their heads on how to prevent the mistake in the future.

Other high-risk industries have traded in the rearview mirror for a better vantage point. For over half a century, the aviation industry has used flight recording devices, commonly known as black boxes, to link flight parameters to near misses or adverse events.(Hunt, 2014; van Dalen et al., 2019). Due to this and other innovations, worldwide flight hours doubled over the past 20 years, but annual fatalities decreased from 450 to 250 (Boeing Commercial Airlines, 2014). In comparison, the US alone has 200,000 preventable medical deaths per year—the equivalent of three fatal aviation crashes each day (Kapur et al., 2016). Medicine can improve, and it begins with better recording practices around surgery.

To achieve better outcomes, some departments have developed surgical black boxes with encouraging results. St. Louis Children’s Hospital in Missouri first had a circulating nurse record errors in real time and then used video devices to record operations; as a result, they found that errors occurred in twice as many operations as previously thought (Bowermaster et al., 2015). St. Michael’s Hospital in Toronto developed a surgical black box that records everything from sponge counts to patient vitals (Jung et al., 2020). Over the course of one year, they found that equipment malfunctioned in 1/3 of cases, technical errors happened 20 times per case, and auditory distractions occurred 138 times per case (Jung et al., 2020).

Yet only a handful of hospitals use this technology. Why? Cost and lack of analytical resources may be prohibitive for some. Policy regarding patient consent is a challenge for others (Shah et al., 2020). But the major issue is culture. Medical personnel must believe that black boxes won’t lead to more litigation, shaming, and punishment before they support them.

Mistakes in health care often occur due to system rather than individual failings (Merry, 2009). Yet when a surgeon makes a mistake that results in a bad outcome and is brought to court, she is personally punished. It goes without saying that patients should be compensated for any error-related suffering they endure. However, recording technology should not contribute to a system that assigns blame instead of inspiring improvement.

The solution lies in deidentification. So long as medical recording technology is used for quality improvement purposes, it does not have to be included in a patient’s record (Henken et al., 2012; Taylor et al., 2011). Voices may be distorted and patient identifiers removed to protect providers. Just as NASA’s Aviation Reporting System grants anonymity to pilots reporting errors (NASA, n.d.), this shifts the focus from individual culpability to systems improvement.

But what if something goes wrong during a recorded case and results in a lawsuit? Judges generally respect the privacy of quality improvement data unless vital information is not in the medical record and cannot be accessed any other way (Henken et al., 2012; Kerbage et al., 2016; Thorarensen, 2017). Even when the court admits these data, they usually help the medical professional.13,16 One surgeon used video recordings to prove that he upheld the standard of care when removing a patient’s gallbladder (Gisclair v. Bonneval, 2005). Another was able to show that a piece of medical equipment was missing rather than left inside a patient (Hoschtitzky et al., 2009).

Operative recording devices are a vital first step in taking an honest look at surgical error. A better understanding of surgical mistakes can help inform policy and lead to superior practices. It’s time we opened the black box and prioritized improvement over punishment.

References

Boeing Commercial Airlines. (2014). Statistical summary of commercial jet airplane accidents: worldwide operations 1959–2014.

Bowermaster, R., Miller, M., Ashcraft, T., Boyd, M., Brar, A., Manning, P., & Eghtesady, P. (2015). Application of the aviation black box principle in pediatric cardiac surgery: Tracking all failures in the pediatric cardiac operating room. Journal of the American College of Surgeons, 220(2), 149-155.e3. https://doi.org/10.1016/j.jamcollsurg.2014.10.018

Gawande, A. A., Thomas, E. J., Zinner, M. J., & Brennan, T. A. (1999). The incidence and nature of surgical adverse events in Colorado and Utah in 1992. Surgery, 126(1), 66–75. https://doi.org/10.1067/msy.1999.98664

Gisclair v. Bonneval. (2005). https://caselaw.findlaw.com/la-court-of-appeal/1363858.html

Henken, K. R., Jansen, F. W., Klein, J., Stassen, L. P. S., Dankelman, J., & Van Den Dobbelsteen, J. J. (2012). Implications of the law on video recording in clinical practice. Surgical Endoscopy, 26(10), 2909–2916. https://doi.org/10.1007/s00464-012-2284-6

Hoschtitzky, J. A., Trivedi, D. B., & Elliott, M. J. (2009). Saved By the Video: Added Value of Recording Surgical Procedures on Video. Annals of Thoracic Surgery. https://doi.org/10.1016/j.athoracsur.2008.07.111

Hunt, J. (2014). The Flight-Data Recorder’s Slow Evolution | The New Yorker. The New Yorker. https://www.newyorker.com/tech/elements/the-flight-data-recorders-slow-evolution

Hutter, M. M., Rowell, K. S., Devaney, L. A., Sokal, S. M., Warshaw, A. L., Abbott, W. M., & Hodin, R. A. (2006). Identification of Surgical Complications and Deaths: An Assessment of the Traditional Surgical Morbidity and Mortality Conference Compared with the American College of Surgeons-National Surgical Quality Improvement Program. Journal of the American College of Surgeons, 203(5), 618–624. https://doi.org/10.1016/j.jamcollsurg.2006.07.010

Jung, J. J., Jüni, P., Lebovic, G., & Grantcharov, T. (2020). First-year Analysis of the Operating Room Black Box Study. Annals of Surgery, 271(1), 122–127. https://doi.org/10.1097/SLA.0000000000002863

Kapur, N., Parand, A., Soukup, T., Reader, T., & Sevdalis, N. (2016). Aviation and healthcare: a comparative review with implications for patient safety. JRSM Open, 7(1), 205427041561654. https://doi.org/10.1177/2054270415616548

Kerbage, Y., Collinet, P., Rubod, C., Merlot, B., & Cosson, M. (2016). Litigation in gynecological surgery: A retrospective study in the French university hospital of Lille between 1997 and 2015. In Gynecologie Obstetrique et Fertilite. https://doi.org/10.1016/j.gyobfe.2016.03.005

Makary, M. A., & Daniel, M. (2016). Medical error-the third leading cause of death in the US. BMJ (Online), 353. https://doi.org/10.1136/bmj.i2139

Merry, A. F. (2009). How does the law recognize and deal with medical errors? In Journal of the Royal Society of Medicine (Vol. 102, Issue 7, pp. 265–271). Royal Society of Medicine Press. https://doi.org/10.1258/jrsm.2009.09k029

NASA. (n.d.). Aviation Safety Reporting System Program Briefing. Retrieved April 5, 2020, from https://asrs.arc.nasa.gov/overview/summary.html

Serious Reportable Event (SREs). (2009). https://www.mass.gov/lists/serious-reportable-event-sres

Shah, N. A., Jue, J., & Mackey, T. K. (2020). Surgical Data Recording Technology. Annals of Surgery, 271(3), 431–433. https://doi.org/10.1097/SLA.0000000000003510

Shanafelt, T. D., Balch, C. M., Bechamps, G., Russell, T., Dyrbye, L., Satele, D., Collicott, P., Novotny, P. J., Sloan, J., & Freischlag, J. (2010). Burnout and medical errors among American surgeons. Annals of Surgery, 251(6), 995–1000. https://doi.org/10.1097/SLA.0b013e3181bfdab3

Taylor, K., Mayell, A., VanDenberg, S., Blanchard, N., & Parshuram, C. S. (2011). Prevalence and indications for video recording in the health care setting in North American and British paediatric hospitals. Paediatrics & Child Health, 16(7), e57. https://doi.org/10.1093/PCH/16.7.E57

Thorarensen, B. (2017). The processing of health information- protecting the individual right to privacy through effective legal remedies. Health and Technology. https://doi.org/10.1007/s12553-017-0184-4

van Dalen, A. S. H. M., Legemaate, J., Schlack, W. S., Legemate, D. A., & Schijven, M. P. (2019). Legal perspectives on black box recording devices in the operating environment. In British Journal of Surgery (Vol. 106, Issue 11, pp. 1433–1441). John Wiley and Sons Ltd. https://doi.org/10.1002/bjs.11198

Medical Students-The Modern Day Tributes?

Written By: LeAnn Louis

If you are called to return to the hospital right now, would you go?

I have been asked this question on more than one occasion within the past 2 weeks. As a 3rd year medical student residing in Boston, just 1 month shy from starting my 4th year, I can’t help but equate this question to that asked of citizens in the Hunger Games trilogy. Who volunteer’s as Tribute? If you are familiar with Hunger Games, then you know that Tributes were chosen to represent their district in a fight that resulted in death for the loser. Although less dramatic, working as a medical professional in a hospital at this time is similar to entering a fight that may result in death. I must admit that at the beginning of this pandemic, I was enamored with being like Everdeen, one of the heroes on the frontline. Yet, as time progresses and the death toll continues to rise, my thoughts have evolved in regards to the matter. So much so that I now answer with a resounding, “ No!”.

At this present moment, I am nestled comfortably at home with my family, thousands of miles away from Boston and my medical school. Meanwhile, the news continues to report the rising death toll of healthcare workers from COVID, the latest of which was a medical resident. In the midst of the chaos and fear surrounding the current pandemic, I can’t help but worry that 3rd year medical students, although not currently working in the hospital, will be drafted to the frontlines especially if governmental measures to flatten the curve continue to fail and fall short of expectations.

I will say that my hesitation is not one just born out of fear, which I must admit is part of the reason; but is mainly ascribed to the prevailing issue of limited personal protective equipment (PPE) in an overwhelmed system, my derisory clinical training, and my current status as a student paying thousands of dollars to be at the highest risk location- the hospital.

It is important to have background on the level of training I have completed prior to the start of my debate. I am 2 pre-clinical years and a year of clinical rotations into my 4 years of school that will award me a Medical Degree. In layman’s terms, my first 2 years were spent studying the pathophysiology, anatomy, and treatment of the most common diseases and as of 3 weeks ago, I completed six, 6-8 week rotations in Family Medicine, Psychiatry, Obstetrics and Gynecology, Surgery, Internal Medicine, and Pediatrics. So compared to the general public or other health care specialties, I do have more training and knowledge that theoretically, should translate to having the ability to treat patients who are dying of respiratory or cardiac illness such as COVID. However, I beg to differ.

First, at this point in my training, I still feel inadequate to care for COVID patients. I have yet to encounter a patient that has had a common respiratory illness such as Tuberculosis, which requires use of strict contact and droplet precautions; yet alone an infectious respiratory illness that requires hazmat level protective gear or is as infectious as COVID. Therefore, placing me in a setting where I would encounter these patients on a regular basis without proper training would increase the risk that I could not only contract COVID, but could be a vector to spread it to family, friends, or other patients I encounter.

As a rising 4th year medical student, I am also still at the stage where I require constant supervision and teaching due to my lack of a medical license, which authorizes me to treat patients more autonomously. More importantly, I believe it is inconsiderate to expect exhausted, over worked, and frightened health care teams to supervise and teach medical students instead of devoting their energy towards treating the boatload of patients with COVID.

Second, I currently attend one of the most expensive medical schools in the nation, with an average debt of $222,251 USD1. Part of this cost is directed to hospitals where I receive training. As a result, I am constantly reminded that I am paying hundreds of thousands of dollars to learn and obtain hands-on experience in the hospital. I find it absurd for medical school administrators to now presume that I will be ecstatic to return to a the clinical setting where I am not only paying thousands of dollars to be there, but my presence there also places my life more at risk than the general population. On the other hand, the majority of those currently treating patients on the frontline are increasing their risk of death by working, but are also being compensated for their heroic service. This is not an attempt to assign value to life or propose that a physician is required to put their life at risk because they are paid. However, I implore you to empathize with me, a medical student who is actively incurring thousands in debt, not receiving compensation for her service, and is not adequately trained to be thrown into a setting that is comparable to a battle field in some areas around the United States.

Furthermore, the global dearth of PPEs have currently placed doctors, nurses, and other frontline workers dangerously at risk. I can’t see how adding 20,000 to 30,000 3rd year medical students to this figure, will make the situation better. Instead, PPEs should be sacredly reserved to the essential staff at the frontlines.

While I am against 3rd year medical students being sent into the hospital during this pandemic, I don’t want to perpetuate the idea that medical students are indeed lazy or that I would prefer to remain comfortably at home, far away from the devastations caused by the virus. In fact, I believe that medical trainees, similar to myself, can still play a major role outside of the hospital. Sign up to baby-sit children of health care workers so that those required to be in the hospital can do so with secured and dependable child care. Volunteer to donate blood as blood products are at currently insufficient yet vital during this time. Offer to call local organizations, businesses, and corporations to collect mask donations. Sign up to call elderly patients who would love companionship, but are unable to receive visitors during this time. These are just a few opportunities among many that can have lasting impact on the lives of people in our community while limiting our need to serve as Tributes during this pandemic.  

References:

  1. Tufts University School of Medicine (2019). Financial Aid Facts. Tufts University School of Medicine. https://medicine.tufts.edu/admissions-aid/financial-aid

Running a Better Mile: Third Year Clerkship Grading

Remember in high school when we were all required to run a mile? It was the one activity everyone (besides the track stars) dreaded. Sweat pouring down your forehead in the blazing heat, heart begging to jump out of your chest, eyes focused on the sweet victory of finding the finish line and mind completely empty as you’re too tired to form coherent thoughts. Just when you think you’ve reached the end, you see the track stars pirouetting like graceful ballerinas past the finish line and continue for another lap just for fun. Yeah, remember that? Now imagine having to run that same mile with sporadically placed hurdles, only put in place for some, but you are being graded on the same scale as the track stars without the hurdles. Doesn’t seem fair, does it? Yet this is essentially the way third year medical students are graded during clerkships.  

As medical students, we are graded on our clinical knowledge, patientcare, interpersonal communication, professionalism and problem-solving. However, we are often graded on other qualities whether we like it or not. As I was told multiple times throughout third year by my preceptors: “It’s just so subjective.” If grading is so subjective, why is so much value placed on these biased assessments of our performance?

University of Washington completed a study looking at the correlation between race/ethnicity and third year clerkship grades. They found that students with higher United States Medical Licensing Examination Step 1 scores and of the female gender were associated with higher evaluations. Minorities received lower evaluations when compared to their white counterparts, even after controlling for factors such as Step 1 scores and gender 1. What’s worse than being in an environment that may be covertly docking you points based off of your race? An environment that openly degrades you based on your race. An environment that openly lets you know “it’s a compliment not to be a minority”. An environment in which you are pet like a zoo animal because you look different. An environment I know all too well. Race/ethnicity is one, if not many, of the hurdles on this mile.

Personality is also a secret measure of our performance. A student that is extroverted, advocates for themselves, bring gifts for the team and isn’t afraid to undermine other students are often perceived as hardworking, invested in clinical work and consequently receive higher marks 2 . This makes it harder for students who are more introverted or less opportunistic. Unfortunately, introversion is often seen as an impediment in the clinical setting. Instead of being perceived as people with great listening skills, introverts are seen as people lacking communication3. More importantly, introversion is embedded in some cultures. Unlike the United States which frowns upon introverts, other cultures see a quiet, soft spoken nature as a sign of respect 4. Extroversion, also, can be seen in a negative light by some. It can be viewed as unprofessional, obnoxious or annoying. Taking that into account, what is too quiet then? What is too loud? What is too goofy? There isn’t a set criterion—it is a judgement that varies from person to person, from doctor to doctor and from evaluator to evaluator. A student could get lucky and be placed with someone who understands them and then have the complete opposite experience on their next rotation and get contradicting feedback. This causes students to feel like they need to put on an act when they are in clinical settings in order to fit a mold. We are often told as students that it doesn’t matter because we can be ourselves once we become doctors. If this is the case, why should it affect our clinical grades in the first place?

Clinical interests also affect how we are evaluated. For example, if someone wants to go into primary care, they might be given fewer opportunities during their surgery rotation compared to other students interested in surgery or other procedural specialties. Although attendings are not supposed to inquire about our clinical interests, they continue to press, usually starting with “I know I’m not supposed to ask but…”. Of course, we could lie, but we shouldn’t have to fear divulging our true interests in medicine just to get a good grade. It’s unfortunate that there is such unwarranted judgment between different fields—people have trouble accepting the fact that students have various passions and curiosities. Gender can also be in play here as people may try to stereotype females as being interested in obstetrics/gynecology or pediatrics and males as being interested in the surgical subspecialties given the gender breakdown within specialties5.

It is much easier to pretend to be less quiet, less goofy, less talkative or pretend to have a different clinical interest. It’s not as easy to hide your race/ethnicity. Because clerkship grades are a critical part of residency applications, this subjective grading scheme is sure to have an effect on the diversity of the physician workforce. Only 5 % of physicians identify as African American, 5.8% identify as Hispanic and 0.3% identify as Native American 6. There has been some discussion around improving initiatives in minority recruitment and retainment in medicine. One of the biggest barriers identified was lack of diversity of faculty on admissions staff and the need for external evaluation7. If a majority of physicians are white, how do we justify clerkship evaluations, but continue to question admissions processes? The same logic can be applied to gender, religion or sexual orientation. Our population continues to diversify, and yet we are struggling to match our physician workforce8,9. A lot of time is put into affirmative action and ensuring the matriculation of minorities into medicine, but we should shift some of our focus onto creating programs aimed at ensuring just treatment, retainment and promotion of underrepresented groups. Having a diverse physician workforce would help with this, as medical students would have mentors from similar backgrounds. While this is an important factor in equality, it is a long road from where we are currently and won’t be reached if we continue on our current path.

Third year clerkship evaluations should be standardized to eliminate bias. Instead of free text comments, evaluations could consist of a checklist of characteristics that are coded and assigned values unbeknownst to evaluators. Grading in this manner will prevent preceptors from attributing higher grades to certain students as they would remain blind to the final value. Better implicit bias training for evaluators and stricter enforcement of certain policies such as asking students about their clinical interests would also help. The rules are known, but some attendings are often repeat offenders because there are no repercussions.

When we start this mile run called third year, the hurdles we are handed are dynamic and everchanging. Some face fewer obstacles, while others encounter too many. As I ran my mile, I majestically leaped over some hurdles and completely fell on my face on others. At the end, I felt accomplished, but also exhausted and defeated. It’s an amazing privilege to be in medical school and I am grateful for the extensive knowledge I’ve gained during my third year, but I would not volunteer myself to endure another lap.

References:

1. Low, D. et al. Racial/Ethnic Disparities in Clinical Grading in Medical School. Teaching and Learning in Medicine 31, 487–496 (2019).

2. Lee, K. B., Vaishnavi, S. N., Lau, S. K. M., Andriole, D. A. & Jeffe, D. B. ‘Making the grade:’ noncognitive predictors of medical students’ clinical clerkship grades. J Natl Med Assoc 99, 1138–1150 (2007).

3. Susan Cain. Quiet: The Power of Introverts in a World That Can’t Stop Talking. (2012).

4. Caprino, K. I’m Sick Of Our Culture’s Bias Against Introverts — And I’m Ashamed To Admit I Share In It. Forbes https://www.forbes.com/sites/kathycaprino/2017/12/29/im-sick-of-our-cultures-bias-against-introverts-and-im-ashamed-to-admit-i-have-one/.

5. How medical specialties vary by gender. American Medical Association https://www.ama-assn.org/residents-students/specialty-profiles/how-medical-specialties-vary-gender.

6. Figure 18. Percentage of all active physicians by race/ethnicity, 2018. AAMC https://www.aamc.org/data-reports/workforce/interactive-data/figure-18-percentage-all-active-physicians-race/ethnicity-2018.

7. Agrawal, J. R., Vlaicu, S. & Carrasquillo, O. Progress and pitfalls in underrepresented minority recruitment: perspectives from the medical schools. J Natl Med Assoc 97, 1226–1231 (2005).

8. Workshops aim to boost number of Latino doctors. https://about.kaiserpermanente.org/community-health/news/workshops-aim-to-boost-number-of-latino-doctors.

9. Black and Hispanic doctors still underrepresented in the U.S. Modern Healthcare https://www.modernhealthcare.com/article/20150824/NEWS/150829945/black-and-hispanic-doctors-still-underrepresented-in-the-u-s (2015).

Why is my kidney more ethically sacred than my uterus?

The legalization of kidney donor compensation to increase kidney availability and decrease the demand for black market kidneys

Nearing the end of my surgery rotation, I was afforded the privilege of scrubbing in to my first kidney transplant. I had thoroughly prepped for the case the night before, as any prudent medical student would; I had read the chapter on the surgical technique, reviewed the anatomy, and could explain the immunologic basis of organ rejection. I was unintimidated as the attending surgeon began his expected line of questioning – “So, Taylor, why don’t we allow payment for organ transplants?”

Ok, curveball of a question, but not unanswerable. I fumbled out some combination of “exploitation” and “lower socioeconomic status” interspersed with many “ums.” Not great but also not bad for someone who was wholly unprepared to discuss the equity and social justice of organ transplant, or so I thought. “Yes, ok, sure,” the attending replied, unimpressed. Now I was intimidated. “But what about surrogate mothers? We allow financial compensation for them – why not kidney transplants?”

Hm? My preparative readings had not prepared me for this. Why surrogacy – why not kidney transplants? Pregnancy, giving birth, donating a kidney: all three have the potential to cause serious illness up to and including death, and all three have the potential to vastly improve someone else’s life with little to no benefit incurred by the donor or surrogate. I tried to provide some sort of answer, but the attending had already moved on; yet I couldn’t stop thinking about his question.

Why is it that some states in the US allow for legal, regulated markets for surrogacy – but no states offer the same arrangement for kidney transplants? The need for donor kidneys is undeniable; as of March 26th, 2020, there are 94,000 individuals on the kidney transplant waitlist, with a new person added every nine minutes; wait times are measured in years, and thirteen people die each day on stand-by1.  Although medical advancements now allow for broader acceptance of deceased donor kidneys, five-year survival post-transplant is greater for recipients of living kidney donations as compared to deceased kidney donations – 92.1% versus 83.3%, a statistically significant difference1.

Out of this need has arisen a thriving black market of kidney and other organ sales that generates anywhere from $600 million to $1.2 billion a year from approximately ten-thousand transplants, although strict numbers are hard to verify2. Laws prohibiting this underground market have done little to prevent its existence, as a world-wide lack of available organs fuels the demand for organized systems that provide the supply. Colloquially known as “transplant tourism,” wealthy individuals pay $50-150K to “brokers” for all-inclusive organ procurement packages that include transportation, accommodation, and of course, the kidney or liver lobe itself3. As to be expected, the health outcomes for the organ donors are greatly impacted by lack of regulations within these arrangements.  Donors have an increased frequency of medical complications, they receive far less compensation than the brokers who facilitate the transplant, they often have limited, if any, access to pre- and post-operative care, and they rarely have adequate informed consent regarding the risks of the procedure3,4.

Finding objective statistics on the health outcomes of donors is near impossible. However, subjective accounts offer convincing evidence on the negative outcome of these practices, which are most often the burden of individuals from developing countries5. Goyal et al interviewed individuals in India who had participated in black market organ donation, despite India outlawing the practice in 19945. All individuals saw a decline in income post-donation, 74% remained in debt despite donating, and many reported long-term negative health outcomes5.

 A terrible reality emerges from these accounts: that despite bans on the sale of organs, an international black market remains, with an increased incidence of adverse events post-transplant. I argue that the solution is to legalize financial compensation for kidney donations in the United States.  

Legalizing financial compensation would increase motivation for living kidney donations, decrease kidney transplant wait times, and decrease the national kidney shortage. As long as there is a discrepancy between the supply and demand of legal kidney transplants, so too will there be an unregulated black market to fill this void. Increasing kidney availability by way of a legal market in the US would also decrease “transplant tourism” to developing nations, a practice that profits from vulnerable populations in economic desperation and often leaves them worse off than before.

An example of such a system already exists in Iran, which since 1988 has a government run, regulated, and compensated living unrelated donor kidney transplant service6. There is no middleman orchestrating the operation in sub-optimal conditions or profiting from the arrangement. The government handles the financial reward and dispenses it directly to the donor. The procedures are performed in sterile operating rooms and the donors receive proper pre- and post-operative care after being thoroughly educated on the surgical risks6. Most importantly, Iran has no waitlist for kidney donations and the majority of donations are from living donors with increased five-year survival of recipients6.

A valid concern of this argument is that a large proportion of the donor pool would likely be individuals of lower socioeconomic status (SES) who are more willing to donate their kidney for the financial benefits. But importantly, these individuals will donate under the proper regulations to ensure their autonomy in their decision to donate and health both before and after the procedure. Compare this to individuals abroad who donate to the black market without having these safeguards – sometimes at the coercion of spouses and family and often leading to detrimental health effects. We should not sacrifice the health of international peoples for the sake of our own citizens. A legal, compensated kidney donation program in the US could alleviate this problem while simultaneously benefiting our own citizens by way of increased kidney availability. The US has already set a precedent in this regard by allowing payment for surrogacy, egg and sperm donation, and clinical trials – all acts that can jeopardize an individual’s health and are more often undertaken by those of lower SES. However, all are legal on the basis of individual autonomy and beneficence to the common good. The US should follow these same ethical principles with kidney donation and create a regulated system of compensation that will make the inevitable organ market fair, equitable and safe.

References

  1. National Data. (2020). Organ Procurement and Transplantation Network, US Department of Health and Human Services. Richmond, Virginia.
  2. Nguyen K. (2015). Black market trade in organs targeted in anti-trafficking treaty. Reuters Health News.
  3. Shimazono Y. (2007). The state of the international organ trade: a provisional picture based on integration of available information. Bulletin of the World Health Organization, volume 85(12), 901-980.
  4. Taylor JS. (2006). Black markets, transplant kidneys and interpersonal coercion. Journal of Medical Ethics, 32(12): 698-701.
  5. Goyal M, Mehta RL, Schneiderman LJ, et al. Economic and Health Consequences of Selling a Kidney in India. (2002). JAMA 288(13): 1589-1593.
  6. Ghods, AJ. (2004). Changing ethics in renal transplantation: a presentation of Iran model. Transplantation Proceedings, 36(1): 11-13.

Easing the burden on America’s underpaid, under-trained, and under-appreciated healthcare workforce- family caregivers

On a Saturday morning during my surgery rotation as a third-year medical student, I was instructed to remove a surgical drain from a patient before he was discharged. I met the patient in his room, a man in his 70s sitting comfortably in bed, with his wife standing next to the window nearby. As I set out supplies, the patient’s wife began to ask questions. What was I using to dress the drain wound? When would that bandage need to be changed? Where could she buy supplies to change the wound at home? “I am sorry to ask so many questions, but it’s just the two of us at home and I am not a nurse or a doctor. I don’t know these things,” she explained.

This was not the first time that I had met a wide-eyed, anxious family member preparing to bring a loved one home, still reeling from the shock of a diagnosis or difficult hospital course and now facing the prospect of weeks or even months as a primary caregiver. For many older Americans, as well as those with disabilities or complex medical needs, family members play a critical role in home healthcare. Even so, these caregivers are often under-prepared for their roles and un-compensated for their time and labor. This is unacceptable. Family caregivers provide an immensely valuable service and deserve adequate training, support, and compensation.

In 2015, an estimated 43.5 million Americans provided unpaid care to an ailing loved one (National Alliance for Caregiving & AARP Policy Institute, 2015). Family caregivers often play a central role in both coordinating and delivering care. They attend medical appointments, oversee hospital discharges, coordinate with home health providers, deliver long term care, and participate in medical decision-making (Committee on Family Caregiving for Older Adults et al., 2016). The value of this unpaid care is significant, amounting to $470 to over $520 billion annually (James et al., 2016).

Providing such critically important support to loved ones comes at a high cost to dedicated caregivers. Studies show that caregivers who participate in healthcare provision are more likely to experience emotional and financial hardships and lost work productivity than those caregivers who do not participate in healthcare activities (Wolff et al., 2016). Many family caregivers must balance their unpaid caregiving responsibilities with full or part-time jobs in addition to other family responsibilities. Caregiving can force workers to take time off from their jobs or even leave the workforce early. To add to the stress, family caregivers are largely under-prepared for their roles. According to a 2015 survey, 42% of caregivers reported that they performed medical tasks without ever having received training (National Alliance for Caregiving & AARP Policy Institute, 2015). Evidence even suggests that emotional stress tied to caregiving is a risk factor for mortality (Schulz & Beach, 1999).

Policy reforms that help to relieve the financial and emotional burdens on family caregivers are warranted. Promising strategies have been suggested, from expanding the Family Medical Leave Act, to introducing federal tax benefits to caregivers, and allowing caregivers to claim Social Security benefits for their work (James & Hughes, 2016). Beyond tax and Social Security benefits or expanded unpaid work leave however, family caregivers deserve direct financial compensation for their labor as well as better training.

An initial step toward providing fair compensation to family caregivers would be expansion of Medicaid reimbursement. Medicaid is the largest payer for long term services and supports both at home and in institutions. Unfortunately, many state Medicaid programs do not allow family members to be compensated for caregiving (James et al., 2016). It is time for Medicaid reimbursement to be extended to family caregivers in all states to ensure that those providing home care to the nation’s most vulnerable populations, including low-income elderly citizens and people living with disabilities, are themselves supported and fairly compensated.   

In addition to financial compensation, family caregivers deserve adequate training. The Caregiver Advise, Record, Enable (CARE) Act, which has been enacted in the majority of states, and the Conditions of Participation for Medicare and Medicaid, require that hospitals involve caregivers in the hospital discharge process and provide instruction on tasks that caregivers will need to carry out at home (Reinhard et al., 2019) (Reinhard et al., 2015). The CARE Act and Medicare and Medicaid conditions both outline a very basic standard of care that should be followed in all hospitals across the country. That being said, these requirements do not specify how or to what degree patients and caregivers should be trained upon discharge and quality of instruction almost certainly varies widely across institutions. Further legislation that adds greater specificity to these requirements is needed to ensure that caregivers are sufficiently trained upon hospital discharge.

When I met them on the day of discharge, the husband and wife I encountered on my surgery rotation were less than an hour from being hurled into the daunting world of home-based family caregiving. The patient’s wife was understandably anxious at the prospect of becoming the primary caregiver for her fail husband without any healthcare training herself. Family caretakers make an enormous contribution to the U.S. healthcare system, amounting to hundreds of billions of dollars’ worth of unpaid work, and experience substantial emotional and financial stress in the process. These largely untrained and under-appreciated members of the healthcare workforce deserve recognition, reimbursement, and training. Efforts should begin with expansion of Medicaid reimbursement to include family caregivers and further legislation that strengthens caregiver training and education upon hospital discharge. In the meantime, any one of us could easily find ourselves in the same position as the wife in the couple I met: pushed into the caregiver role without adequate warning, preparation, or compensation while struggling to cope with a loved one in pain.  

Resources:

Committee on Family Caregiving for Older Adults, Board on Health Care Services, Health and Medicine Division, & National Academies of Sciences, Engineering, and Medicine. (2016). Families Caring for an Aging America (R. Schulz & J. Eden, Eds.). National Academies Press. https://doi.org/10.17226/23606

James, E., & Hughes, M. (2016, September 8). Embracing The Role Of Family Caregivers In The U.S. Health System. Health Affairs Blog. https://www.healthaffairs.org/do/10.1377/hblog20160908.056387/full/

James, E., Hughes, M., & Rocco, P. (2016). Addressing the Needs of Caregivers at Risk: A New Policy Strategy. University of Pittsburg: The Stern Center for Evidenced-Based Policy. https://www.healthpolicyinstitute.pitt.edu/sites/default/files/CaregiverRiskPolicyStrategy_April2016_0.pdf

National Alliance for Caregiving, & AARP Policy Institute. (2015). Executive Summary: Caregiving in the U.S. 2015. National Alliance for Caregiving and AARP Policy Institute. https://www.caregiving.org/wp-content/uploads/2015/05/2015_CaregivingintheUS_Executive-Summary-June-4_WEB.pdf

Reinhard, S., Feinberg, L., Choula, R., & Houser, A. (2015). Valuing the Invaluable: 2015 Update. AARP Public Policy Institute. https://www.aarp.org/content/dam/aarp/ppi/2015/valuing-the-invaluable-2015-update-new.pdf

Reinhard, S., Ryan, E., Young, H., & Choula, R. (2019). The CARE Act Implementation: Progress and Promise. AARP Public Policy Institute. https://www.aarp.org/content/dam/aarp/ppi/2019/03/the-care-act-implementation-progress-and-promise.pdf

Schulz, R., & Beach, S. R. (1999). Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study. JAMA, 282(23), 2215. https://doi.org/10.1001/jama.282.23.2215

Wolff, J. L., Spillman, B. C., Freedman, V. A., & Kasper, J. D. (2016). A National Profile of Family and Unpaid Caregivers Who Assist Older Adults With Health Care Activities. JAMA Internal Medicine, 176(3), 372. https://doi.org/10.1001/jamainternmed.2015.7664

“Why is it so Hard to Help?”: Barriers to Generosity in the Setting of COVID-19

This question has been one floating in the heads of the general public since the COVID-19 pandemic hit the US. In times of suffering, people want to help. People want to give. Since the pandemic began, all constant media and government messaging has highlighted that the best way to help is “stay home.” But are other forms of philanthropy welcomed? When people conduct their own research on the internet for ways to give, many people have experienced difficulty finding clear information on ways to donate items in high demand, such as personal protective equipment (PPE).

As a medical student at Tufts University, I have to come to find that I serve as the closest bridge to the healthcare community for many individuals in my life. Over a dozen of them have questioned me on how to donate PPE that they or their companies have in surplus. I figured through my status as a student at Tufts, I would have no trouble finding a contact at our major teaching hospital Tufts Medical Center to help coordinate donation efforts. However, my own search for this person was tortuous, and involved contacting several intermediary figures, only to find that a clear outlined communication pathway had not been established. In addition, it became clear this was partially intention, as they did not want to be inundated with what they would consider unhelpful communications.

So how has the state facilitated this effort of providing avenues for philanthropy? On March 29th, 2019, the governor of Massachusetts, Charlie Baker, gave a press release announcing the launch of an online portal where state residents and small businesses could offer volunteering availability and/or donations of PPE to aid in the COVID-19 pandemic. This announcement occurred approximately four weeks after his press release broadcasting the first presumptive case of the virus in the state, as well as 19 days after he declared a state of emergency. The World Health Organization had already made it clear in a news release on March 3rd that there was a worldwide shortage of PPE, leaving healthcare workers vulnerable on a global scale. And this was no secret locally either. As early as March 14th, there was journalistic coverage of a local shortage of PPE throughout the state, from platforms including the Boston Herald, WBUR, and Boston 25 News.

So why does this delay matter? Does it even matter? Let’s look at the scale of the problem. As of April 3rd, there have been 10,402 confirmed cases of COVID-19 throughout the state, with 192 total deaths attributed to the virus according to the Massachusetts Department of Public Health (DPH). Even though the Massachusetts DPH does not track the proportion of these cases that are healthcare workers serving on the frontlines, Boston 25 News has been collecting data directly from the hospitals on their respective quantity of infected workers. According to their sources, as of the April 3rd, there have been at least 857 confirmed cases amongst healthcare workers, at least 8% of all total cases in the state. Due to the fact that data are missing or not up to date from several hospitals, the burden of infected healthcare workers is sadly much higher.

Sure, these healthcare workers are at a much higher risk of contamination than the general public due to increased interaction with sick individuals, and that could have further contributed to this high proportion of confirmed cases. But if hospitals were better equipped with PPE, could more of their staff been appropriately prepared to keep themselves safe as they cared for those affected? If the state and local government were quicker to centralize philanthropic efforts across the state, could supplies have been more quickly obtained and equitably distributed amongst healthcare facilities across the state?

Obviously, it should not be lost on anyone at this point that physical distancing and isolation are the most important tools we have as a general population in slowing down the transmission of this virus. It’s easy, it’s universal, and it’s effective…so it makes sense this is the most heavily promoted means of engagement the general public has received. But there’s other ways people can help, and people have been trying to help. And this is true in all times of suffering, such as natural disasters and events of terrorism. Centralized bodies, such as the local and state government, should have previously established programs to aid philanthropic efforts in the face of future public health emergencies, by anticipating where help is needed and coordinating efforts so that individuals and companies may contribute to the cause where they are able.

Sources

  1. Baker-Polito administration launches online portal for personal protective equipment, volunteers to support COVID-19 outbreak. Mass.gov. https://www.mass.gov/news/baker-polito-administration-launches-online-portal-for-personal-protective-equipment. Published March 29, 2020. Accessed April 3, 2020.
  2. First presumptive positive case of COVID-19 identified by Massachusetts State Public Health laboratory. Mass.gov. https://www.mass.gov/news/first-presumptive-positive-case-of-covid-19-identified-by-massachusetts-state-public-health. Published March 2, 2020. Accessed April 3, 2020.
  3. Governor Baker declares State of Emergency to support Commonwealth’s response to coronavirus. Mass.gov. https://www.mass.gov/news/governor-baker-declares-state-of-emergency-to-support-commonwealths-response-to-coronavirus. Published March 10, 2020. Accessed April 3, 2020.
  4. Shortage of personal protective equipment endangering health workers worldwide. World Health Organization. https://www.who.int/news-room/detail/03-03-2020-shortage-of-personal-protective-equipment-endangering-health-workers-worldwide. Published March 3, 2020. Accessed April 3, 2020.
  5. Kashinsky, L. Massachusetts hospitals face shortages of protective equipment in coronavirus outbreak. Boston Herald. https://www.bostonherald.com/2020/03/14/massachusetts-hospitals-face-shortages-of-protective-equipment-in-coronavirus-outbreak/. Published March 14, 2020. Accessed April 3, 2020.
  6. Goldberg, C. Got extra masks or goggle? Mass hospitals already running short, ask for donations. WBUR. https://www.wbur.org/commonhealth/2020/03/17/donations-masks-hospitals-ppe. Published March 17, 2020. Accessed April 3, 2020.
  7. Daniel, T, Alulema P. 25 investigats: State’s first responders face potential shortage of critical safety supplies amid coronavirus crisis. Boston 25 News. https://www.boston25news.com/news/25-investigates-states-first-responders-face-potential-shortage-critical-safety-supplies-amid-coronavirus-crisis/OPKLQLKC7RHITJ77IQKSDAK7Q4/. Updated March 16, 2020. Accessed April 3, 2020. 
  8. Coronavirus Disease 2019 (COVID-19) cases in MA: As of April 3, 2020. Massachusetts Department of Public Health. https://www.mass.gov/doc/covid-19-cases-in-massachusetts-as-of-april-3-2020/download. Published April 3, 2020. Access April 3, 2020.
  9. Saccone, M. More than 850 Massachusetts hospital workers test positive for COVID-19. Boston 25 News. https://www.boston25news.com/news/local/more-than-500-massachusetts-healthcare-workers-test-positive-covid-19/2B5BNFQTHJFXBGD7VNBBPFVDSU/. Updated April 3, 2020. Accessed April 3, 2020.

Medical Education: One woman’s perspective

In the age of change in medical school education, one pervasive criticism seems to persist: today’s medical students are weak.

Our system stretches students between two major components, patients and exams, and for it to work it requires preceptors to appreciate the balance that we try to achieve. If we shift the balance towards books before an exam and miss a patient encounter, we are weak. If we ignore the books and we fail, then we lack organizational skills and discipline; however, the reality is that our exams test rare, random and extremely detailed information that is often clinically irrelevant.

Turn to your friendly neighborhood medical student for detailed information about the appearance of a cell with Whipple’s disease, which allows us to be both book smart and look like an idiot in an operating room near you! Expecting students to ignore studying for the sake of patient care is ignoring the fact that the two sections of medical education are not connected. If these were connected, there would be no imbalance and we would never have to show weakness by leaving to study because learning would be learning.

Patient care is an incredibly gratifying, exciting and emotional part of medical school. It lifts our spirits and allows us to take on all the tests, pimping and other hoops into which we fling our bodies with the everlasting fear that if our desperate flight does not reach, we may crash out a life and career that we have worked so hard to achieve. I have no issue with the time needed for medical school and training but do not call me weak for trying to appease a system that you created. 

The need for strength in medicine is clear and important but our obsessive infatuation with it could be a reason for gender disparities in certain specialties. In many, if not all, cultures, women are not celebrated for their strength. When students are called weak, it draws on a culture of masculinity where strength is everything. Often it is used as a substitute for lazy, though these words have very different connotations depending on the characteristics of the person in question. Weak shifts to a viewpoint that goes much deeper than work ethic, it brings into question the ability to sacrifice, which I’m finding that for women in medicine is significant.

As a woman, I have to be better. I have to work harder than the men, be quicker, take call when I’m off, and never show physical or mental weakness. I have to be better to make up for an inborn deficit innate to being female. I have to be a role model, a social activist, not to mention a technically phenomenal surgeon, all the while ignoring my skills in intuition, warmth and listening as those qualities show the secret that I fear will make me seem weak; I am female. 

When I mention I’m interested in cardiac surgery and children enter the conversation, it’s clear I am expected to either not have children, be an absentee mother or be criticized for having a stay-at-home partner (the phrase “whipped” comes to mind). Men forget the privilege it is to not have to prove that they are enough, to not have to constantly explain why they are the way they are. It would be brilliant to never have to question why all the surgical equipment does not fit my hands, which is because they were not intended for them.

In the use of weak and strong, we put in place a one size fits all surgical expectation, where a great surgeon means one defined set of skills with minimal diversity. In reality, being weak might mean that I cry with a patient, that I go home and sleep because I fear to make a mistake due to severe fatigue, or that I listen more than 30 seconds before cutting a patient off. Being weak to you might just make me exactly the surgeon we need. 

Treating us badly under the guise of creating grit and strength is like saying slavery makes people better. It is outdated and only useful for perpetuating abuse. There is no surprise that constant criticism and feeling like you are never good enough causes apathy and burnout. Grit can be created in long hours in things you love; it is not created in abuse.

The medical culture is akin to coming up for air after years of suffocation and looking at the person underground and thinking, “well if they work hard enough, they too will be able to breathe again.” The reality is that some people won’t breathe again; people will die and we, the medical system, will have killed smart, capable, caring human beings because we refuse to give up on the abusive culture of medicine. I have learned to be proud to be weak, for it allows me to be my definition of strong. 

Bridget C. Olsen

When Chloroquine makes a fashionable comeback—should chloroquine be given to patients for COVID 19?

As the number of US cases of COVID-19 continues to rise exponentially past 330,000 [1], government and health officials are scrambling to find methods other to social distancing to bend the curve. Vaccines are currently in the works, but this may take months.

The focus is now on Chloroquine, a drug over 80 years-old initially marketed as an antimalarial but currently used in the United States for rheumatic conditions including lupus and rheumatoid arthritis [2]. Authorities are looking into chloroquine and its analog, hydroxychloroquine, as potential “game-changer[s],” as President Donald Trump says, to curtailing the COVID-19 pandemic [3].

Its use has however been met with concern from the scientific community about its efficacy and safety—and rightfully so. 

Understandably, we’re in a time of crisis. However, chloroquine should not be used for the treatment of COVID-19 until proper clinical trials have been performed, as current available evidence for its efficacy is scarce, and because of its potential side effect profile. 

Trump’s claims on chloroquine’s effectiveness stems from a study done in the early 2000s on its efficacy in managing patients with SARS-CoV, a virus of the same family as COVID-19 which was endemic in Southern China in 2003 [4]. One of the studies focused on chloroquine’s effectiveness of antiviral inhibition. Though it did show a significant inhibition in the replication of SARS-CoV, the study was limited in that it was done on cells so we confidently predict the response in human beings. Furthermore, it didn’t show any information on the ability of chloroquine to reduce the extraordinary inflammatory response that SARS-CoV and COVID-19 are known to elicit, something that should be assessed in trials with human participants [5].

As a result, with little evidence, there is no telling as of now whether or not chloroquine holds the benefit that Trump vehemently proclaims in his briefs. His optimism is backed by inadequate data and anecdotal testimonies of the effectiveness of chloroquine such as that of a Connecticut man, who asserted that chloroquine (in addition to an HIV medication) worked best at helping him recover from COVID-19 [6].

In addition to the lack of adequate evidence of efficacy, it is also imperative to consider the potential adverse effects of the medications.  Chloroquine, when taken in high doses, can cause retinal toxicity reduced visual acuity, and in worse case scenarios, loss of vision. It is also associated with seizures, paranoia, and hallucinations [7]. 

Chloroquine poisoning is also possible and has occurred after Trump’s pushing of the drug. For example, a Lagos state official reported on twitter that local hospitals were “now receiving patients who were suffering from chloroquine poisoning” [8]. Even in the United States, an Arizona couple was admitted to an intensive care unit after the couple self-medicated with nonpharmaceutical Chloroquine phosphate marketed for cleaning fish tanks. The man passed away [9]. If we are not careful about how we publicize chloroquine, more people can end up in the hospital for poisonings. Therefore, unless new studies come out displaying its efficacy, chloroquine and hydroxychloroquine should not be given to patients with COVID-19. 

Some would say that now is not the time for proper trials and doctors should give people medications that have the potential to work. Proponents have also brought forth the ‘Right to Try’ Act as a legal justification for using chloroquine. The Act, which passed in 2018, gave individuals diagnosed with life-threatening diseases or conditions who have tried all approved treatment options and who are unable to participate in a clinical trial to access investigational drugs unapproved for treatment [10]. 

If COVID-19 falls under conditions making patients eligible for treatment, we would administer the drug to over 300,000 a drug for which there have been no randomized control trials to corroborate its efficacy. Of note, the right to try law has been introduced, but not passed in New York State, which is currently the United States epicenter of the pandemic [11].

Furthermore, there is still a national shortage of chloroquine and hydroxychloroquine [12] though the Health and Human Services states that they have accepted millions of medications donated by Novartis generics and Bayer Pharmaceuticals [13]. Will this be enough to supply not only patients with COVID-19, but also all patients in the US with Lupus or Rheumatoid arthritis who rely on regular doses?

In the face of this crisis, the urgency to come up with medical measures to treat patients with COVID-19 and reduce the infection rate should not lead us into distributing chloroquine when the evidence for its efficacy is scarce. Promising clinical trials including the Prevention and Treatment of COVID-19 with Hydroxychloroquine (PATCH) trial have recently been launched [14]. So let’s focus on other interventions including upholding our social distancing measures while carefully awaiting the results.

References

  1. Coronavirus COVID-19 Global Cases by the Center for Systems Science and Engineering (CSSE) at Johns Hopkins University (JHU). Retrieved from https://coronavirus.jhu.edu/map.html
  2. Chloroquine. LiverTox: Clinical and Research Information on Drug-Induced Liver Injury (February 07 2017). Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK548224/
  3. Trump calls anti-malaria drug a ‘game-changer’ for coronavirus, but the FDA says it needs study. The Washington Post. (Mar 19 2020). Retrieved from https://www.washingtonpost.com/business/2020/03/19/trump-calls-anti-malarial-drug-game-changer-coronavirus-fda-says-it-needs-study/
  4. SARS (Severe Acute Respiratory Syndrome). World Health Organization. Retrieved from: https://www.who.int/ith/diseases/sars/en/
  5. Keyaerts, E., Vijgen, L., Maes, P., Neyts, J., & Van Ranst, M. (2004). In vitro inhibition of severe acute respiratory syndrome coronavirus by chloroquine. Biochemical and biophysical research communications, 323(1), 264–268. https://doi.org/10.1016/j.bbrc.2004.08.085
  6. Connecticut dad says chloroquine helped him recover from coronavirus. New York Post. (Apr 03 2020). https://nypost.com/2020/04/03/connecticut-dad-credits-chloroquine-for-coronavirus-recovery
  7. Pranshul Goel, P., Gerriets, V. (2019). Chloroquine. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK551512/#_article-19438_s4_
  8. Nigeria records chloroquine poisoning after Trump endorses it for coronavirus treatment. Cable News Network. (Mar 03 2020). Retrieved from: https://www.cnn.com/2020/03/23/africa/chloroquine-trump-nigeria-intl/index.html
  9. Man Dies, Woman Hospitalized After Taking Form Of Chloroquine To Prevent COVID-19. National Public Radio. (Mar 24 2020). Retrieved from https://www.npr.org/sections/coronavirus-live-updates/2020/03/24/820512107/man-dies-woman-hospitalized-after-taking-form-of-chloroquine-to-prevent-covid-19
  10. Right to Try. United States Food and Drug Administration. Retrieved from https://www.fda.gov/patients/learn-about-expanded-access-and-other-treatment-options/right-try
  11. Right to Try in Your State. Retrieved from http://righttotry.org/in-your-state/  
  12. Coronavirus (COVID-19) Update: Daily Roundup. (March 31 2020). Retrieved from https://www.fda.gov/news-events/press-announcements/coronavirus-covid-19-update-daily-roundup-march-31-2020
  13. HHS accepts donations of medicine to Strategic National Stockpile as possible treatments for COVID-19 patients. U.S. Department of Health and Human Services. (Mar 29 2020). Retrieved from https://www.hhs.gov/about/news/2020/03/29/hhs-accepts-donations-of-medicine-to-strategic-national-stockpile-as-possible-treatments-for-covid-19-patients.html
  14. The PATCH Trial (Prevention and Treatment of COVID-19 with Hydroxychloroquine) (PATCH). Retrieved from https://clinicaltrials.gov/ct2/show/NCT04329923