By Adrian Johansen, freelance writer; @AdrianJohanse18.
It’s perhaps the greatest gift a person can have, but we usually take it for granted until it’s gone. Without it, nothing else in life is quite the same. And once it’s gone, it can be very hard to get it back. And while patients play the ultimate role in safeguarding and directing their health, the truth is that no one can do it alone. No matter what your role in the healthcare industry may be, you are charged with a sacred obligation to treat your patients with respect, honor, and care.
No matter who our patients are — rich or poor, young or old, sick or well — they depend on healthcare experts to help them protect this most precious gift of health. They expect and assume that those whom they entrust with their lives and the lives of those they love will be respectful of that trust, will care for them and their dear ones ethically and honorably. But what does this mean for your clinical practice? What do healthcare ethics look like in the year 2020?
Honoring the Human in the Technological Age
Privacy is one of the most sacred rights and significant concerns in healthcare. However, there’s no escaping the fact that we live in the era of big data, and there’s also no escaping the fact that big data can be a tremendous asset in healthcare. Even if a patient is thousands of miles away from home and from their primary healthcare providers, electronic health data can facilitate the sharing of essential medical records, from scans to lab results, with just the click of a button.
Big data can also make diagnosis much quicker and more accurate, and can give physicians instant access to the latest research to ensure that patients are receiving the best, most state-of-the-art, evidence-based therapies.
But how, in this age of big data and breathtakingly fast technological evolution do we ensure that respect for the human is not lost? How do we avoid reducing individual patients to a mere system of lab results and scans? How do we prevent losing the person in a sea of data sets? That will and must be one of the principal ethical considerations in 2020.
A Question of Privacy
Of course, as more and more personal health information goes digital, privacy concerns only grow. To be sure, HIPAA laws impose strict regulations on how patient data is stored, shared, and used, and carries massive fines for every violation. Nevertheless, data breaches are always a fear, especially as cyber-attacks appear to be proliferating today, striking even the most apparently secure systems.
And beyond even the need to protect patients’ sensitive data from unauthorized eyes, there is also the important question of the use of patient information in ways currently permitted under HIPAA. Big data allows patient data to be used, anonymously, for epidemiological and diagnostic reasons.
Population health data is compiled from patient records to identify particular health behaviors and risks in certain communities and demographics, and this information is used to develop public health policies.
Further, it’s the accumulation and comparison of massive quantities of patient data that makes the rapid and accurate diagnosis we described above possible. But this begs another crucial ethical question: is it right, fair, just or ethical to use patient’s health information in this way? Should patients have full and ongoing control over their own personal health data, or does the public health trump personal privacy? This is another ethical concern facing us in the New Year. While states are enacting varying degrees of healthcare licensure reform, should we also enact patient data reforms?
Ensuring Patient Autonomy
The question of what rights the patient has over their own medical information links to a larger question of patient autonomy, or the freedom to choose, act, and manage one’s life and privacy as one sees fit.
The healthcare provider is obligated to honor, protect, and preserve patient autonomy throughout the caregiving process — but it doesn’t end there. As the patient’s advocate, the caregiver is also responsible for helping patients to understand their own rights, including the right to self-determination. This is especially true when it comes to matters of health, whether physical, emotional, psychological, or social. Such ethical responsibilities often put the healthcare provider in the role of counselor and educator.
Consider, for example, the matter of sexual health. This most intimate topic is also among the most important topic to address with those under our care if we are to ensure their physical and emotional well-being. As care providers and health educators, it is incumbent on us to be proactive in supporting patients’ sexual health. This includes not only educating patients on issues of disease and pregnancy prevention, but also on issues pertaining to their psychological and emotional health. For example, to help support patient autonomy and protect them from potential abuse, we may use our role as health educators to ensure patients’ understanding of consent in sexual relationships.
Customized Medicine—If You Can Afford It
The United Network for Organ Sharing (UNOS) estimates that a new name is added to the organ transplant waiting list every ten minutes in the United States. There are currently nearly 100,000 people in the US in need of a new kidney, another 14,000 awaiting a new liver. And that does not even include the tens of thousands of people around the world who have lost limbs due to illness, accident, even military service.
Thanks to new technological advances, patients can now get bioidentical limbs and organs to replace the injured or missing ones. Biological 3D printers, for instance, can literally “print up” limbs and organs perfectly customized for the patient’s body. And with DNA-mapping, scientists can now “grow” organs that are genetically identical to the patient’s own cells—because they’re taken from the patient’s cells.
However, these technologies, needless to say, aren’t cheap. And even as these resources promise longevity and quality of life for the affluent and well-insured, for those who are not, these advances may only serve to highlight and widen the gap between the haves and the have nots. Determining how to ensure equal access to these life-saving and life-enriching technologies will be another essential ethical concern for the year ahead.
As healthcare providers, we are a crucial line of defense in protecting our patients’ well-being and promoting a high quality of life. Meeting our obligation to those we care for means behaving ethically and honorably in defense of our patients’ physical, emotional, and psychological health. However, this is no easy feat, as it involves addressing a range of complicated challenges, from the implications of ever-evolving medical technologies, to the obstacles associated with rising healthcare costs and decreasing access to care, to the responsibilities for patient education across all domains of physical, psychological, and emotional health.