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PERSPECTIVES ON COVID-19 POLICIES CMS President-elect Sami Diab, MD, and co-author Stephen Kantor look at the ethics of hospital policies implemented during the pandemic, and the effects they had on two non-COVID-19 patients and their families
F E A T U R E
Perspectives on COVID-19 and resulting policies
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KEEPING SIGHT OF THE HUMAN DURING A PANDEMIC; INSIGHTS INTO THE PRESSURES COVID-19 PLACES ON MEDICAL STAFF, PATIENTS AND FAMILY MEMBERS
Sami Diab, MD, CMS President-elect, and Stephen Kantor Sami Diab, MD Stephen Kantor
As a practicing physician in Denver, Colo., Dr. Sami Diab has experienced the impact of COVID-19 both as a front-line medical professional and as a carer. Dr. Diab is an oncologist who is also board certified in hospice and palliative medicine, and has a fellowship in integrative medicine from the Andrew Weil Center for Integrative Medicine at the University of Arizona. This education and many years of medical practice help shape and inform his passion for the vital role of hospice and palliative care in patient care. These factors also underpin his knowledge of the substantial empirical evidence of positive patient outcomes and cost savings derived from the effective integration of hospice and palliative care in health care processes. His co-author, Stephen Kantor, has experienced the family impact of COVID-19 as his father passed away in a Denver-area hospital, albeit not directly from COVID-19.
With the passage of time, the COVID-19 pandemic may prove to be an epochal event in medicine with its seismic ripples reverberating into all facets of life. Even in the most benign circumstances, the practice of medicine cannot help but raise ethical concerns. The COVID-19 pandemic is most assuredly not a benign set of circumstances and has raised a panoply of ethical issues not only for the medical community but for society as a whole. The following stories speak to some of the ethical issues raised by the COVID-19 pandemic.
On May 30, 2020, Dr. Diab received a phone call from Adeline, wife of his close friend Elias, informing him that Elias was severely injured in an automobile accident. The clinical result: severe spinal injury including severe spinal stenosis, fracture of the C2 vertebrae, and spinal cord contusion. In short: acute spinal cord syndrome. On Feb. 19, 2020, Stephen Kantor drove his father, George, and stepmother to a Denver-area hospital where his father would ultimately be diagnosed with complications from acute myeloid leukemia (AML).
It is vitally important that we see these two men as more than two disparate medical cases. Behind their respective medical cases – behind all medical cases – are vital, valuable human beings.
Life is good
Elias is a 79-year-old geophysicist and was still working prior to the accident that instantly changed his life. He was in excellent health, very independent, very sociable and people oriented. In fact, Elias was enjoying a quality of life for which anyone, 79 years old or otherwise, would be grateful. He was born in Palestine. In 1948 his family left Palestine and moved to Lebanon. Elias moved to the U.S. many years ago and has many fascinating accounts about the Israeli-Palestine conflict. He is loving family man with two daughters and six grandchildren, all of whom are his pride and joy. Given the pivotal role of family in his world, Elias is completely dependent on his family for his emotional and psychological needs and well-being. In 1956, at the age of 15, having witnessed horrors no 15-year-old should ever have to witness, George fled Hungary. He and his traveling companions managed to cross the border into Austria and ended up in a refugee camp. He settled in England, then South Africa, then many years later Denver. George is a man of incredible will, self-confidence and self-determination. Throughout his life he worked constantly – harder than anyone else possibly could – to provide for his family and ensure they would never know the deprivations that he has known. By 2020, George is enjoying a long-delayed and well-earned retirement.
Paralyzed and alone
Following his automobile accident, Elias finds himself paralyzed and alone in a Denver-area Intensive Care Unit (ICU). In a cruel instant, he has been transformed from physically independent and emotionally connected to physically dependent and emotionally isolated. Owing to COVID-19, his family is not allowed to visit him in the ICU. Elias in a
state of panic and desperation. As the situation is a grey area with different treatment options, disagreement on a treatment plan occurs among the trauma team, the ICU team, the consulting neurosurgeons, and Dr. Diab himself, who has been added to Elias’s medical care team at the request of Elias and his family.
Because of a divergence of opinion, Elias receives multiple sets of conflicting information within a very short period of time. This exacerbates his psychological distress and he is consumed by fear and loneliness, isolation and emotional deprivation. Elias becomes very needy and cries out constantly for attention from the nursing staff. Dr. Diab, by sitting with him most of Saturday, has been reclassified as a caregiver and is denied re-entry to the hospital, only rejoining the care team through careful and measured negotiation. Dr. Diab is able to facilitate communication with Elias and his family and his doctors, easing his distress. He was eventually moved out of the ICU and family was allowed to visit him, bringing about a complete transformation.
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As COVID-19 tightened its grip and panic occurred across health care systems, the hospital at which George was being treated seemed determined that he had COVID-19. At one point the hospital decided they wanted to move George from the oncological ward to the COVID19 floor. As George was severely neutropenic and without any immune system to speak of, his family viewed this as tantamount to a death sentence. His family begged hospital decision-makers to reconsider the decision to move George to the COVID-19 floor. A follow-up chest X-ray and CAT scan were performed and showed the initial chest X-ray was inaccurate. The hospital relented and did not move George to the COVID-19 floor.
Dr. Diab, in his capacity as an oncologist, met George twice. In addition to his medical interest in George, Dr. Diab took the time to talk with George as a person and got to know something of the wise, optimistic, cheerful and mischievous human being behind the tubes, IVs, pic lines and AML.
A few days later, however, the hospital amended its COVID-19 policy and no longer permitted any family visitors. This marked the beginning of a steady decline in George’s physical and emotional condition. While accepting that correlation is not causation, it would arguably be disingenuous not to conclude a very real connection between these two events. In a horribly Pyrrhic victory for George and his family, his worsening condition eventually resulted in the hospital allowing one family member to make one limited visit per day. In the very early hours of April 11, George was rushed to the ICU. His wife was able to visit him in the ICU as a result of his perilous condition. At 6:30 a.m., George’s wife left the hospital to go home and get some much-needed rest. His son, Stephen, was already waiting at the hospital and at 7 a.m. was ushered into George’s ICU room. Stephen was advised that, owing to COVID-19, if he left the room he would not be permitted to re-enter. Consequently, Stephen began a 12-hour vigil until George passed away at 7 p.m.
This simple recounting of events cannot possibly convey the complex emotions of George’s entire family. COVID-19 meant that that no other family members were able to be at George’s bedside in his final hours. To add insult to terminal injury, George’s wife was in the hospital waiting room unable to see her husband as she was deemed a high risk for COVID-19 owing to her age. She sat for anguished hours, a few hundred feet away from George, separated by hospital walls and doors and the omnipresent insurmountable wall of COVID-19.
Patients are people, not just cases
Because of COVID-19, some hospitals forgot the human beings behind the medical cases. By denying families across the country and around the world access to their loved ones because of COVID19, hospitals inadvertently took away the vital caregiver role that families fill in every patient’s treatment and potential recovery. They took away the family role and were not able to replace it. The catastrophic consequence, albeit unforeseen and unintended, was the dehumanization of patients and their families.
12 MILLION 400,000 ADULTS CHILDREN
12 million U.S. adults and 400,000 children are living with serious illness
68%
68 percent of Medicare costs are related to people with serious illness A very frustrated Dr. Diab wonders why, seemingly, no thought was given to or preparation made for addressing the absence of the family caregiver role in the health care equation. Dr. Diab is aware of physicians wanting to volunteer to help fulfill that role, to spend time with the lonely, the sad and the scared, knowing that their families cannot be with them. To help, to some extent, meet patients’ psychological and emotional needs in the absence of family.
Conclusion
The preceding has dealt with the some of the emotional impacts of COVID-19. However, as a doctor and scientist, Dr. Diab is deeply concerned that the COVID-19 pandemic resulted in the suboptimal use of hospice and palliative medicine in favor of western pharmaceutical and physical treatments.
We must learn from these experiences
The data on the effectiveness of hospice and palliative care are extremely clear and well documented. According to the American Hospital Association: 1
and do better in the future. ■
66%
There is a 66 percent reduction in symptom distress reported by palliative care recipients $6 BILLION Savings of $6 billion per year are possible if hospitals nationwide implement quality palliative programs
1. American Hospital Association.
Changing How We Think About
Palliative Care. www.aha.org/center/ performance-improvement/palliative-care.
Accessed June 6, 2020. Following are a small sample of articles speaking to the effectiveness of hospice and palliative care: Parikh, RB, et al. N Engl J Med. 2013;369:2347-51. Fadul N, et al. Cancer. 2009;115:2013-21. Maciasz RM, et al. Support Care Cancer. 2013;21:3411-9. Bakitas M, et al. JAMA. 2009;302:741-9. Vanbutsele G, et al. Lancet Oncol. 2018;19:394-404. Ferrell BR, et al. J Clin Oncol. 2017;35:96-112.
