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This Holiday Season, Pass the Family History
This morning, I diagnosed a 49-year-old female with stage 4 colon cancer. She will probably not be alive in 5 years. She could have possibly prevented this diagnosis if she had known her family history. Many people don't know the health history of their family. This holiday season is a perfect time and opportunity to delve into this history and prevent more senseless deaths.
The apple really doesn't fall too far from the tree. When it comes to genetics, neither does health. The fact remains that, while a person's genetic makeup is not the sole determining factor of health, it does account for up to 30 percent of a person's chance of surviving and having a long life. Genetics can contribute to longevity and health by creating changes in the genes that will either predispose for or protect against certain diseases. But are familial diseases actually discussed in families or does the code of silence prevail?
Genes can influence the presence of up to 2,000 diseases including heart disease, stroke, cancer, liver disease, alcoholism, and even depression. Many of these diseases can be prevented or even treated and controlled if caught early. For example, the risk of breast cancer in the average woman in the United States is roughly 12 percent. In those patients with abnormal BRCA1 or BRCA2 genes, that risk can rise to 80 percent. In another example, if not treated, patients with familial adenomatous polyposis, which is an inherited disorder in which a genetic mutation leads to a multitude of polyps throughout the gastrointestinal tract, have nearly a 100 percent chance of developing colorectal cancer.
Unfortunately, it is not possible to know the family history in every individual. Some children have been separated from parents either by adoption, death of the parent, or even an intentional separation of one or both parents from the life of the child. I would argue that a greater focus on preventative care, more strategic management of current diseases, and even targeted genetic testing are valuable tools in these persons.
For everyone else, it is imperative to have open and frank discussions regarding the major illness and causes of death for parents, siblings, grandparents, aunts, and uncles. I encourage patients to ask about medications, prolonged hospitalizations, major surgeries, mental health illnesses, and even drug and alcohol addictions. Get specific and ask the tough questions. Forget guilt or shame. Knowing the family history can reveal inherent health risks in a person and could lead to offering better preventive care and lifestyle changes to reduce those risks.
Other health care issues should be incorporated into the conversation. Families are often left to discuss palliative care plans for patients at times when the patient is incapacitated and unable to wholly participate in the discussion. So, what are their wishes regarding feeding tubes? Would they want to be placed on a ventilator? If their heart were to stop or if they were to have respiratory failure, do they want to be resuscitated? Most people do not consider these to be pleasant conversations, but they are certainly necessary ones to have. Knowing this vital information better equips the family to make end of life health care decisions without added frustration or unnecessarily feeling as if they were doing something wrong.
On more than one occasion, I have cared for patients and their families who failed to secure a definite end of life care plan prior to their loved one becoming critically ill. It is a painful process to watch families first accept the fact that death is imminent and in the same breath, determine when that last breath will be taken by discontinuing ventilator care. Alternatively, I have witnessed families who had those tough conversations prior to being placed in the situation of discontinuing critical care. In those cases, the decisions to execute the prearranged plans were fundamentally and seemingly made with less feelings of guilt.
This holiday season, approximately 90 percent of Americans will pass the turkey as they celebrate with family and friends. These gatherings present an opportunity to have full, uninterrupted access to family members that may otherwise not be seen throughout the year. It is practical to discuss the family medical history and even end of life issues when everyone is in the same place at the same time. By this, everyone in the family has space to express concerns and resolve conflicts regarding intended plans. Why not take advantage of this time to not only pass the turkey, but to also pass the family history around the table?
Each family should talk and delve into the health issues that matter this holiday season. Unearth the hidden medical histories of the family. Write them down. Take the collected histories to healthcare providers to incorporate into the medical record. By doing so, more family members may be around for holiday dinners for many years to come.
Unacceptable Cost of Silence
Nearly a month before our national presidential election, a video surfaced online capturing a conversation between Presidential candidate Donald Trump and reporter Billy Bush. During this 2005 "private" conversation between the two, Trump lewdly brags to Bush about kissing and groping women without their consent. He is even heard boasting he can "get away" with this behavior because of his celebrity status. Trump has been heavily criticized for his words and actions. Billy Bush, on the other hand, was criticized and fired from the "Today" show for what he did not say. There is no footage of Bush stopping and discouraging these comments by Trump. Instead, he plays along and is heard saying "whoa" and "whatever you want." He has since apologized and expressed feeling "embarrassed and ashamed" for his lack of immediate condemnation of Trump's suggestive comments and for playing along.
The backlash that ensued reminded me of times in my own life when I played along or remained silent in the presence of language or actions I genuinely wanted to condemn. As I spend a great deal of my time at the hospital, many of these incidences have occurred there. Unfortunately, these incidences transpire more times than most of us in the medical community would want to admit. What is the cost of our silence? In the case of Billy Bush, his inaction cost him his job and perhaps his career. When we as surgeons, fail to speak up in the presence of inappropriate behavior, injustice, and bias, what are the stakes?
The operating room is one place where I have witnessed these types of incidents. The offending culprit was the attending surgeon. Generally, the attending surgeon controls the social climate and atmosphere. So, for example, if that surgeon wants classical music playing, there will likely be classical music playing. Aside from the care the patient requires, the surgeon is the next most looked after person in the OR. When the surgeon engaged in otherwise offensive conversation, no one on the surgical team spoke up. No one expressed concern that the language or tone was inappropriate. No one changed the subject to signal that the content or nature of the conversation was not ok. At worst, the joke was countered with a similarly vulgar example. Sadly, several members of the team responded with either silence or laughter, but no one stopped or condemned the conversation.
Such derogatory, offensive, or discriminatory comments to or about another person or group are not confined to the OR. The subject of the comments have ranged from patients, nurses, hospital administration, or even other physicians with racist, sexist, or ageist undertones. My years in medical school and early years as a resident, when I was most vulnerable and the least powerful and influential in the medical hierarchy, coincide with the times I was most tolerant of this behavior.
So, regrettably, I acknowledge that I, too, have remained silent in the immediate presence of injustices, and because I did not speak up, I have continued to internally replay these moments, wishing I had responded differently. One specific example haunts me to this day. While I was on the interview trail for surgery residency, a department chairman made a racially insensitive comment to the group of interviewees, including me, an African-American, about not taking care of "tar babies" at their hospital. In the moment, I said nothing. I did nothing. In hindsight, I am ashamed of that fact.
In the ensuing years, I now understand I was unable to fully process what was happening in the moment. Partly, I was in shock. After having time to think about his comments, I think this is likely true of others who may have been in very similar situations. Several questions come to mind. What should you say? When should you say it, and how? Secondly, I believe there is a certain cost to speaking up against ethically unjust and offensive language. One could certainly not be accepted or in some cases could be detested for "stirring the pot." It could lead to social isolation. Nevertheless, I question whether the cost of speaking up (social isolation and exclusion) may not compare to the ultimate cost of not speaking up (further discriminatory and defamatory practices, preventing forward societal progression). But regardless of the cost, I now hold myself accountable and will speak up and address, in a variety of ways, any offensive, derogatory, or discriminatory language.
The demographics of the world are changing, which is appropriately reflected in the surgical profession. Fifty years ago, blacks had great difficulty getting access to surgical residencies and women were considered primarily for degrees in nursing. Today, our surgical societies and residencies have had made progress in increasing diversity to more accurately reflect the patient population and create a culturally sensitive health care environment. This change should also be reflected in what we say and what we tolerate being said in our presence.
How would things have been different if instead of tolerating those spoken words by Trump and playing along, Billy Bush would have discouraged it or even just brought up a different topic? What if every man (and woman) who heard him relay stories of or bore witness to his behavior against women spoke up and declared it unacceptable? But Bush didn't, no one did, and we continue to have debate and even protest about this and other offensive and derogatory words and actions of not only Trump but also others. While these protest and arguments create a great dialogue in our society, real change occurs in the exact moment and space when inappropriate, discriminatory, and ethically debased language is spoken and a courageous person makes the decision to intentionally speak up against it.