Can We Talk: Organ Donation (The Basics)

Hey everyone – We are back with another Can We Talk series! *cues Tevin Campbell*

This time the topic is organ donation. Organ donation can have a bit of a bad wrap – especially among people of color. And that means there is no better timing for some candid conversation about the topic. This will be a three part series. Part one will give an overview of organ donation. Part two will be about common myths surrounding organ donation. Part three will be about the social media ethics and organ donation.

So let’s jump in!

What is organ donation? It’s giving one or more organs to an individual without compensation. You can also donate bodily tissues. Signing up is easy – you can either go to your their neighborhood motor vehicle association but you can also sign up online as well ( link here ). The benefit of signing up online is that you can decide which organs you would like to donate. If you have an organ donation card, that’s not enough documentation to make sure you are in the donor registry and such. You must go through either the MVA/DMV or online registry. If you change your mind about donating, you can remove yourself from the registered donors list at anytime. In most states, you have to be over the age of 18 to sign up for organ donation. Just make sure you let your family know that you are an organ donor, so there are no surprises. Also – organs aren’t matched by race or ethnicity (i.e. black recipients do not just get organs from black donors). Here is a list of organs and tissues that can be donated –

  • Heart
  • Kidneys (2)
  • Lungs (2)
  • Liver
  • Intestines
  • Cornea
  • Skin
  • Heart valves
  • Bone
  • Blood Vessels
  • Connective Tissues
  • Bone Marrow
  • Stem Cells
  • Umbilical Cord Blood
  • Peripheral Blood Stem Cells (PBSC)

There are two types of organ donation – deceased donation and living donation (totally not as scary as it sounds). There are about 125 million people registered up for deceased donation – but only 3 in 1000 can actually become donors upon death. There are only about 6000 living donations per year. SinceI live for a good diagram/chart – here is a plain language step-by-step for each type of donation –

DECEASED DONATION LIVING DONATION
·      You’re admitted to a hospital (severe illness or accident) ·      Evaluated by transplant center to make sure no negative physical or mental effects will come with the donation
·      The medical team does everything they can to save you ·      If everything is okay, the surgery is scheduled and competed
·      If you die and are unresponsive, the medical team runs tests for brain death ·      Your organ is transferred to another individual (Congrats you saved a life!)
·      The Organ Procurement Organization (OPO) and Organ Procurement and Transplantation Network (OPTN) are contacted and organs are artificially maintained until surgical removal
·      If the OPO and OPTN identify you as a donor and identify a match, organ is surgically removed for transplant

You’re welcome.

It’s really important to become an organ donor. There are about 119,000 people on the transplant waiting list list. Over half of the people on the list are minorities. Just over a quarter of minorities are deceased donors. But, statistics are moving in the right direction. In 2010, African-Americans have a higher organ donation per million compared to Whites, Hispanics, and Asians. It is the highest it has been and most of the improvement has been attributed to organ donation educational programs geared towards African-Americans.

We all know that knowledge is power. Knowledge about organ donation is crucial for minorities because we have real reasons for being mistrustful of medicine. But now we have current reasons to move past that mistrust. Anyone can wake up one day and need a transplant – a mother, father, or a sibling. In case you missed it – the transplant waiting list is long. I know I sound like a cheesy motivational speaker, but signing up does make a difference. You can potentially save eight lives by just making the choice to become a donor. Signing up to be an organ donor will give someone a new life, figuratively and literally.

Next week, we will tackle organ donation rumors!

Until next time,

The Neighborhood Bioethicist

 

HELPFUL LINKS

OrganDonation.gov – www.organdonation.gov

SOURCES

Callender, C. O., N. Koizumi, P. V. Miles, and J. K. Melancon. “Organ Donation in the United States: The Tale of the African-American Journey of Moving From the Bottom to the Top.” Transplantation Proceedings 48, no. 7 (September 2016): 2392–95. doi:10.1016/j.transproceed.2016.02.094.
“How Organ Donation Works, Organ Donation Information | Organdonor.gov.” Html. Accessed June 19, 2017. https://www.organdonor.gov/about/process.html.
O’mally, Aisha K., and Tracy R. Worrell. “Statistics or Stories, Black or White? Examining Influences of African American Organ Donation.” Howard Journal of Communications 25, no. 1 (January 2014): 98–114. doi:10.1080/10646175.2014.864209.
“Organ Donation.” Encyclopedia Britannica. Accessed June 20, 2017. https://www.britannica.com/topic/organ-donation.
Quick, Brian L., Nicole R. LaVoie, Allison M. Scott, Dave Bosch, and Susan E. Morgan. “Perceptions About Organ Donation Among African American, Hispanic, and White High School Students.” Qualitative Health Research 22, no. 7 (July 1, 2012): 921–33. doi:10.1177/1049732312439631.
Robinson, Robinson, and Dana H. Z. Robinson. “Understanding African American’s Religious Beliefs and Organ Donation Intentions.” Journal of Religion and Health 53, no. 6 (201412): 1857–72.

Designer Babies and Blackness.

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The other week, I was scrolling on Twitter and this video of a black baby gave me so much joy. There was this little dark-skinned, baby girl, just old enough to speak comprehensively, and she was looking in the mirror posing and saying, “I’m GOOOORRRR-geous, I’m GOOORRR-geous.” Duh – anyone’s baby calling themselves gorgeous on camera is adorable and has potential to go viral. But to see a dark-skinned baby, saying with confidence how beautiful she is before she is potty trained warmed my heart.

Colorism is present in many cultures. However, it is especially prevalent in black communities in the United States. Colorism originated in slavery, prospered well through the Civil Rights Era, and has currently planted itself like a weed watered by society’s beauty standards. Individuals were considered more attractive based on how European one’s features were and how fair one’s skin wasa. Preferential treatment and perceived attractiveness based on skin color looms over black children from a very early age.

Traditionally, babies have been conceived with their parent’s gene pool dictating their genetics. But now, an embryo’s genes can be modified before it is even implanted in the womb. These are called designer babies. The primary purpose of genetically modifying these embryos is to diagnose and remove genetic illness from an embryo. However, it can also predetermine the sex of an embryo and is foreseen to be able to change eye colors, height, and IQ. Naturally, this scientific breakthrough has created a heated ethical debate regarding the use of experimentation on embryos, the general effectiveness of editing genes, and parental power in the making of a baby. However, I would like to introduce this thought – will designer babies fan the flames of colorism in the black community? Or more simply put – if you had the option to make your child lighter skinned or darker skinned, would you take it?

Theoretically it could be done. Melanocytes are the skin cells that determine your skin color. Cells carry your DNA. If you can alter or remove DNA from an embryo, you could potentially do the same with skin cells. Truth be told – no would would even have to know. Ethically speaking, this would be problematic. Altering the physical appearance of an infant in general, without their say in the matter, is already a recipe for disaster – especially in the context of skin color. For a black infant, it could send a very negative message to the infant due to the sensitive nature of colorism, beauty, and appearance in black communities. Most importantly, it could aggravate self-hatred in black communities as well. It would directly imply that darker skin and African features are not acceptable and that it is so offensive that a parent is willing to clinically and genetically change it before the child reaches the womb. Culturally speaking, this would be equally as problematic.

Green eyes, looser curls, lighter skin. Before, a person couldn’t choose how you looked. Now, there are options. There is always someone we would be if we had the option. Who would you choose? If you looked deep, would you be cool with who you are? It’s 2017 – we would all say yes in front of the cameras. No one wants to admit that they are not content with themselves – or who their children could be. But designer babies are on the horizon and there is no better time for us to do some self examination. Are we really black and proud – proud enough to let the option just be an option? Or would we make some changes? No need to answer – some things are just meant for you, God, and your therapist.

Thinking out loud,

The Neighborhood Bioethicist

 

SOURCES

“DNA | Facts & Structure.” Encyclopedia Britannica. Accessed June 1, 2017. https://www.britannica.com/science/DNA.
Gallagher, James. “‘Designer Babies’ Debate Should Start, Scientists Say.” BBC News, January 19, 2015, sec. Health. http://www.bbc.com/news/health-30742774.
Ghose, Tia, Staff Writer | March 13, and 2014 02:00pm ET. “Children to Order: The Ethics of ‘Designer Babies.’” Live Science. Accessed May 26, 2017. http://www.livescience.com/44087-designer-babies-ethics.html.
Knoepfler, Paul. The Ethical Dilemma of Designer Babies. Accessed May 26, 2017. https://www.ted.com/talks/paul_knoepfler_the_ethical_dilemma_of_designer_babies.
“Melanocyte | Biology.” Encyclopedia Britannica. Accessed June 1, 2017. https://www.britannica.com/science/melanocyte.
Pang, Ronald T. K., and P. C. Ho. “Designer Babies.” Obstetrics, Gynaecology & Reproductive Medicine 26, no. 2 (February 1, 2016): 59–60. doi:10.1016/j.ogrm.2015.11.011.
PM, Newsweek On 1/11/10 at 6:24. “The Ugly Roots of the Light Skin/Dark Skin Divide.” Newsweek, January 11, 2010. http://www.newsweek.com/ugly-roots-light-skindark-skin-divide-213518.
Rochman, Bonnie. “Customized Babies Are Closer than You Think – The Boston Globe.” BostonGlobe.com, April 2, 2017. https://www.bostonglobe.com/ideas/2017/04/01/customized-babies-are-closer-than-you-think/adVz9LNz6EA3tGyfbmpmwO/story.html.
Whetstine, Leslie M. “Ethical Challenges in Assisted Reproduction: The Place of Preimplantation Genetic Diagnosis in a Just Society.” Journal of Child Neurology 30, no. 5 (April 1, 2015): 547–50. doi:10.1177/0883073813511151.

Compassionate Care: The Icing, Swagger, and Finesse.

(A special thank you to Autumn Fiester – the professor who made sure we knew that healing physical ailments is just the first step. Compassion and empathy changes everything.)

Get comfortable cause we are having story time.

I was running to my Uber, trying to avoid an additional charge and my driver leaving me, when I rolled my ankle. But by the time I sat down in the car, the pain had subsided. So what did I do? I went about my day – rock climbing, grocery shopping, and to a networking event. But by the time I got to the networking event, I was in excruciating pain. I embarrassingly (and literally) dragged myself out of the event and asked the security guard where I could easily catch an Uber to go to my neighborhood urgent care. He took one look at my face and suggested that I go to the hospital across the street instead.

So I staggered to security desk in the hospital to ask for directions to the emergency room. What the security guard didn’t know was that I am terrible with directions and got lost within five seconds. Picture this – a random black girl, dragging herself down a hallway, half-fussing with my parents on the phone to tell them I was fine, and half-gasping in pain – clearly not fine, in a hospital in a new city. I looked a hot mess. Definitely not that polished-networking-ready-black-girl magic-powerhouse I was when I walked in (y’all better let me feel myself in peace – I was killin’ it before my injury.)

I finally waived down a hospital employee in a suit to see if I was any closer to the emergency room. He looked at me, apologized for my pain, apologized for the length of the hall, and sent me down said hall in the direction of the ER. I told him thanks and kept staggering. I went a little further and waived down a woman in scrubs to see if I was going in the right direction again. I also mentioned that I was pretty sure that I had sprained my ankle. soon She similarly apologized for my pain, looked at me in pity, and told me to keep walking down the same hallway and that the ER was further down. I thanked her and kept staggering.

Right after that, a younger woman in business attire stopped me and said she overheard me talking to the woman in scrubs. She said there were a set of stairs coming up soon and asked if I needed help. I almost shouted yes because I had no idea how I was going to get down the stairs with the pain. She helped me down the stairs, got me a wheel chair, and wheeled me the rest of the way to the ER – which was much farther away than I thought. She got me inside, made sure I was properly settled into the ER, and waited until the nurse called me in. I asked her name and her position at the hospital – she said she was an administrative assistant. Not a doctor or a nurse, but an administrative assistant. To be truthful, I had too much pride to ask for a wheelchair myself even though I needed one. But this woman looked beyond my exterior willingness to struggle and identified my need immediately. And she literally didn’t have to – it was not in her job description to help me. But her choice to show me compassion was the difference between a very miserable and lonely evening and one where I left the ER with a smile.

I have worked and studied at community hospitals and academic teaching hospitals – with my fourth location coming up this summer. My bioethics’ professors always pushed the importance of advocating for compassionate care in medicine. But for the first time in my life, I experienced why compassionate care matters. Here’s the truth – everyone who I spoke to at the hospital had the same agenda of making sure I received the care I needed. When I left the hospital, I got the ankle brace, the crutches, and the painkillers. So the job got done. But I was impacted the most through the compassionate care I was given. It’s the difference between a suit off the rack and a custom made suit. Intentional compassionate care is the icing, the swagger, and the finesse. It takes healthcare from ordinary to extraordinary. You could always get away with providing ordinary care. After all – the goal is to get patients’ healed efficiently and effectively. But I would dare say that side-stepping compassionate care is just mediocrity with a nicer name. Why not take it to the next level?

Cake with icing tastes better. Presence with swagger looks better. A touch with finesse feels better. Healthcare with compassion – well just is better.

Recovering from a Sprain,

The Neighborhood Bioethicist

 

Why You Need a Health Accountability Partner.

True confession: I hate going to the dentist. I don’t like the sounds of the tools, the toothpaste they use tastes gross, and God forbid if my sensitive teeth need a filling *insert scrunched up face emoji*. Mind you, I am totally grateful that I actually have dental insurance. But hey – some people don’t like their vegetables. I don’t like the dentist. It’s a personal problem. Lately, I have noticed that I am less and less motivated to try to go to the dentist. Life gets busy and you realize that you don’t even like going – so you don’t make an effort to go. But I also don’t want to be 90% gums before I’m 30 and should therefore drag myself to the dentist. Talk about a internal conflict of interest.

There are so many reasons why people like myself don’t insert themselves into the healthcare system. Here are the statistics according to a 2015 study:

  • Traditional Barriers (High Cost of Healthcare, Not enough time, Lack of Insurance, Inconvenient Hours) – 58.4%
  • Unfavorable Evaluations of Healthcare (Physician factors, Fear, Organizational factors, Expected negative results) – 33.3%
  • Low Perceived Need to Seek and Medical Care – 12.2%

The study theorizes that all of these factors create general avoidance of the healthcare in the  United States. Some of these factors a person can control (like fear). Some of these factors we can’t (like cost). But tackling these issues can be easier if you have a health accountability partner. A health accountability partner is someone in your life that makes sure you are really taking care of yourself and vice versa. They can be a sounding board and a general resource for you. Health is more than healthcare – it’s your well being and your day-to-day sanity. Here are some other benefits of including someone else in your journey to better health.

  1. It is making you a priority. Whether you are a millionaire or have $0.05 in your bank account, self-care is crucial and should be a priority. Self-care is a huge part of your health in general. Eating well, drinking water, sleeping, seeing your doctor, getting your exercise – all of that goes in that category. Also, these are preventative as well (and preventative care is easier on the pocket than buying medication). Of course, self care can be done alone. But having another person checking to see if you are taking control of your health can help motivate you to really make a difference in your life.
  2. Support is a good thing. No man is an island – everyone needs support and community. Speaking to the black community, we usually keep a dual mindset. On one hand, we believe it take a village to create an edifying community. We love our extended families and we tend to raise our children in community. However, there is also the mindset that we have to always be looking out for ourselves and it is a sign of weakness to ask for help. Support is not a sign of weakness. It is a sign of strength and self-realization. You cannot carry the weight of the world on your shoulders – it will break you eventually. A healthcare accountability partner can help provide support in a very sensitive area of your life.
  3. It provides a safe space. The great thing about having a healthcare accountability partner is that it’s a no-judgment-zone. You can be honest when you are scared. You can ask weird questions. You can compare eating and exercise habits, get their opinions on different doctors, and learn about insurance options. Two minds are better than one when it comes to health. General health and healthcare is hard to navigate. If both of you are just trying to learn how to live healthier lives, there are no dumb questions. Matter of fact – everyone learns by asking questions. So it pays to have a place when you can.
  4. Sharing experiences helps normalize healthcare conversations. We have to get better at talking about health and talking takes practice. In the African-American community specifically, oral tradition has historically been used to educate, preserve, and to connect. I think ancestors had the right idea. Talking about healthcare with someone else fosters connection and knowledge. Learning how to talk to someone while they keep you accountable helps you learn how to hold others accountable. Sharing stories is essentially starting a dialogue. And the more you talk, the more normalized the conversation becomes.

In essence, obtaining and maintaining good health is harder alone. We all need people who will be in our corner, keep us informed, and fight for us to be better – even when we don’t want to be. For me, I have a circle of about six people where we all rejoice in our health victories and ask questions when we are lost. But it can also be just you and one other person who makes sure that you see your therapist once a week like you promised. Whoever you pick just know that you don’t have to do life (or your health) alone.

Sitting amongst friends,

The Neighborhood Bioethicist

 

SOURCES

Almendrala, Anna. “Here’s Why Men Don’t Like Going To The Doctor.” Huffington Post, June 13, 2016, sec. Healthy Living. http://www.huffingtonpost.com/entry/why-men-dont-go-to-the-doctor_us_5759c267e4b00f97fba7aa3e.
Khazan, Olga. “All the Reasons Women Don’t Go to the Doctor, Other Than Money.” The Atlantic, May 15, 2014. https://www.theatlantic.com/health/archive/2014/05/all-the-reasons-women-dont-go-to-the-doctor-other-than-money/370952/.
Taber, Jennifer M., Bryan Leyva, and Alexander Persoskie. “Why Do People Avoid Medical Care? A Qualitative Study Using National Data.” Journal of General Internal Medicine 30, no. 3 (March 2015): 290–97. doi:10.1007/s11606-014-3089-

Slaves Can’t Give Informed Consent.

So heres the thing – we don’t sanitize slavery here. Not on this blog, not in my house, and not in my universe.

source

Now a few weeks ago, I was doing some light reading on the slave gynecological experiments. I came across a scholarly article that was defending the reputation of of J. Marion Sims – The medical ethics of Dr J Marion Sims: a fresh look at the historical record by Dr. L. Lewis WallWidely considered the Father of Gynecology, Sims was an 19th-century American surgeon who perfected the surgical repair of the vesicovaginal fistula.

*trigger warning for the squeamish folks in the back*

Vesicovaginal fistula is a very painful opening between the bladder and the vagina that causes consistent incontinence. It’s main cause is from obstructed labor. Good news ladies – its rare. Barely happens anymore in the United States. I will own that Sims’ perfection of a consistent surgical technique to repair vesicovaginal fistula was an important contribution to society. However, it came through the avenue of painful and unethical experimentation on African American female slaves. Wall used Sims’ accounts in his medical journals to stipulate that Sims’ obtained informed consent from his slave patients and that they would’ve been ultimately grateful for the surgeries themselves. And I have a simple response – No.

Claiming that these slaves had given informed consent contradicts the principle of informed consent itself. Informed consent requires autonomy – you cannot have one without the other. There was no autonomy – much less autonomous decision making here.  Harriet A. Washington says in her book, Medical Apartheid, “The planter, not the slave, had to be satisfied with the results. The planter, in every important sense of the word, was the patient…with the slave left outside, unconsulted, uninformed, and with no recourse if she or he was unsatisfied, injured, or killed…”. Wall quotes Sims saying that he would not perform an operation on these particular slave women without their full consent to support his argument. However, in that same statement, Sims says that “three young, healthy, colored girls ,were given to me by their owners…” These procedures were done without anesthesia and while the women were naked on their hands and knees. The surgeries were so painful that the doctors assisting Sims in restraining the women eventually quit because they could not take the women’s screams. Ironically though, Sims held the popular perspective that blacks did not feel as much pain as whites. Slaves generally were not given adequate recovery time during illnesses because a day out of the fields was money out of their owners pockets. A sick or recovering slave was essentially worthless. Humoring Wall –  if the women did want the procedure, it is not clear from the historical record if most of these women were actually cured of the vesicovaginal fistula. Furthermore, this still does not negate the problem of informed consent. At minimum these women were under duress from their masters. They were given away for the purpose of experimentation. What slave in their right mind would actually resist? They could’ve been beaten, sold, or even killed if they were or appeared to be resistant. At minimum – this is duress.

Also – slaves were property. They were not considered people. Any surgery that would make a slaveholders’ slaves better and more efficient child bearers was a surgery worth giving to their slaves. The resale value of a slave was of the upmost importance and reproduction was a key part of that package. Thomas Jefferson himself said, “I consider a slave woman who breeds once every two years as profitable as the best worker on the farm.” Breeding was so important that even though slaves could not be legally married, slave marriage was created so slaves could “morally” procreate. To say that receiving this surgery ultimately benefitted these women trivializes the nuances of slavery and of slave medicine. This was ultimately for the slave owners benefit. The idea that this was a benevolent favor is misguided. Slave medicine was not an autonomous or benevolent practice of medicine. There are shows on HGTV dedicated to showing how people can improve on the resale value of their homes. These surgeries were the Antebellum equivalent. You want to sell a house? You renovate your kitchen. You want to sell a slave? Get their vagina fixed.

In all, Sims did experimental surgery on eleven slave women and performed 30 surgeries one particular slave named Anarcha. These women were victims of nonconsensual human experimentation – sadly not uncommon for the slave population at this time. The whole point of the Neighborhood Bioethicist is have authentic conversations about healthcare. Sanitized slavery is not authentic. Its a lie. And claiming that slaves can give informed consent is sanitizing slavery. Because fun fact – a slave inherently cannot give informed consent. A slave’s master giving a slave away to a doctor to have surgeries performed on them is not informed consent. A slave saying yes to a surgery under duress because they understand that they are property and that their life would be in danger either way is not informed consent. Call it what it is – unethical human experimentation on human property for convenience and resale value. Too many black women suffered for this to be cheapened like fool’s gold.

*insert rolling eyes emojis*,

The Neighborhood Bioethicist

HELPFUL READING

Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present

SOURCES

Darlene Goring. “The History of Slave Marriage in the United States.” The John Marshall Law Review. Accessed May 3, 2017. http://digitalcommons.law.lsu.edu/cgi/viewcontent.cgi?article=1262&context=faculty_scholarship.
“Remembering Anarcha, Lucy, and Betsey: The Mothers of Modern Gynecology.” NPR.org. Accessed April 30, 2017. http://www.npr.org/2016/02/16/466942135/remembering-anarcha-lucy-and-betsey-the-mothers-of-modern-gynecology.
Spettel, Sara, and Mark Donald White. “The Portrayal of J. Marion Sims’ Controversial Surgical Legacy.” The Journal of Urology 185, no. 6 (June 2011): 2424–27. doi:10.1016/j.juro.2011.01.077.
Stamatakos, Michael, Constantina Sargedi, Theodora Stasinou, and Konstantinos Kontzoglou. “Vesicovaginal Fistula: Diagnosis and Management.” The Indian Journal of Surgery 76, no. 2 (April 2014): 131–36. doi:10.1007/s12262-012-0787-y.
Wall, L L. “The Medical Ethics of Dr J Marion Sims: A Fresh Look at the Historical Record.” Journal of Medical Ethics 32, no. 6 (June 2006): 346–50. doi:10.1136/jme.2005.012559.
Washington, Harriet A. Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. Knopf Doubleday Publishing Group, 2008.

 

What your Advance Directive has to do with Cookout Season.

Dedicated to Grandma Jones, Grandma Harris, and Aunt Geraldine. Rest easy – a better day is coming.

There are two seasons I love – the Christmas season and COOKOUT season. *cues electric slide*

Cookout season is better than any of the basic, generic, four seasons. The weather is great, the food is better than great, and you are with folks you love and who love you. You got your uncles on the grill. You got your aunties droppin’ knowledge. You got your cousins and friends crackin’ jokes. And if you hit a proper cookout, there’s no end time. Laughs, wisdom, and good vibes only – cookout season is the best.

Since I’ve moved away from home, I don’t make it to family cookouts often. But when I do, I cherish those moments. Over the past year, I lost three of my cookout regulars. They were staples in my life and in a way, I never thought I could loose them. Just like that – the cookout dynamic changed. Cookout season reminds me of how fragile and uncertain life can be and how much I want the best for the people in my life. And because I’m always thinking about bioethics, that got me thinking about advance directives.

An advance directive is legal document that lets a health care professional know your desires for end-of-life treatment. It is a two part document that consists of a living will and a power of attorney. The living will deals with your end-of-life treatment. The power of attorney allows for you to designate a person to make medical decisions for you if you are unable to speak for yourself. Each state’s advance directive form can have a slightly different format, but they all achieve the same goals.  Advance directives are important because they express a person’s wishes regarding end-of-life treatment, life-sustaining therapy, organ donation, and the like. They aren’t just for the more *ahem* “seasoned” folks in our lives. Anyone can have them – and they should have multiple copies. You should have a copy on your person and a trusted family member should have a copy as well.

Some critics say that advance directives are not effective for a few reasons. One of the main issues is that a health care professional may not actually see your advance directive until much later – if at all. For example, if you have a copy in a drawer in your house, a health care professional may not see it. Another issue with advance directives are that they can become outdated if they are not updated regularly.  In my personal opinion, I think it is better to have one than to have nothing. Even if a health care professional doesn’t see it right away, it gives your family guidance as to what you would want. It also will formally determine who can speak for you if you can’t speak for yourself. Also – POLST forms are available in most states for the seriously ill. These forms are medical orders that your health care professional fills out to specify immediate end of life treatment goals. However, POLST forms can only be filled out by a physician, and if you do not have a physician, it won’t get filled out at all. Just make sure that you update your advance directive regularly and that the appointed people have always have updated copies. One of the tenants of bioethics is autonomy – the right to make independent choices. If you don’t make the decision yourself, someone else will make it for you. An advance directive gives a person control in a potentially grave situation where they wouldn’t otherwise have control.

Accidents and emergencies happen. The way I see it, giving the people you love a choice in tragedy is an amazing privilege. But we don’t live in fear and wait for tragedy to happen. We live. We love. We enjoy our families and friends. We eat that extra plate of macaroni and cheese, barbecue, and greens and don’t worry about our waistlines. The moment is important. So enjoy your plate and enjoy the moment. I know I will. Let me know what you gonna be eating in the comments below!

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Stuffing my face,

The Neighborhood Bioethicist

 

HELPFUL LINKS

SOURCES

“POLST – Honoring the Wishes of Those with Serious Illness and Frailty.” Accessed April 12, 2017. http://polst.org/.

Span, Paula. “The Trouble With Advance Directives.” The New York Times, March 13, 2015. https://www.nytimes.com/2015/03/17/health/the-trouble-with-advance-directives.html.

———. “When Advance Directives Are Ignored.” The New Old Age Blog, 1403600419. https://newoldage.blogs.nytimes.com/2014/06/24/when-advance-directives-are-ignored/.

“What Are Advance Directives? – CaringInfo.” Accessed April 12, 2017. http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3285.

 

Can We Talk: Family Health History – Part 2

Hi guys! So this is Part 2 in the Can We Talk series. In the first post, we talked about how to start a conversation with your family about family health. If you haven’t checked out Part 1, read it here! This particular post will focus the actual meat of the conversation. Like I mentioned in Part 1 – we will talk about mental health and having effective conversations about the that soon. But I’m saving that for a separate post so we can really go in depth on the topic. So on with the questions!

  1. Ask about the relatives you do not know. Both of my grandfathers are deceased. One of them I knew very well, but  I never knew the second one. I know that I am not the only person who has a similar story. This is a good time to ask about the grandpas and grandmas and aunts and uncles that you have never met. You can ask about their health directly, but a lot of information can be gleaned just from stories. And story telling is way easier on the stomach than some of the heavy duty conversations.
  2. Ask about sicknesses you know/heard about in your family. I’m sure there are some health challenges that you already know exist in your family. So if your aunt had a heart attack or if your dad has high cholesterol, try to ask questions that give you clarity about what that specifically means for them. Questions like, “when did X start?” or “Does Auntie just have X or do you think Uncle has it too?” It’s also not a bad idea to do some basic Googling. I’m not advocating for diagnosing yourself – thats a health care professional’s job. But just like you Google quick questions for basic knowledge, you can do the same here.
  3. Ask how often they go to the doctor/emergency room/urgent care. Now this is a touchy one. Seeing the current state of healthcare in this country, everyone doesn’t just go to the doctor. Shoot, I use my local urgent care all the time because I am between doctors. But – it’s important to get an idea of how much of your family’s health is being managed on their own. It can also give you an idea of if they are managing on their own by choice or by circumstance.
  4. If/when they go to the doctor, what do the doctors say about their health. This a pretty self-explanatory question. You want to get an idea of where your family’s health currently is. Blood pressure, diabetes, anemia, predisposition to other diseases. – all of the general information a doctor can give you.
  5. Medications – what they are being prescribed, taking, or not taking. This is also a good time to find out what medications your folks are currently using or have been prescribed. This is obviously sensitive cause they may not want you to know what they are taking (or not taking!). But it is important to just put it out there and see where the conversation can go. Its valuable information to have on hand. Don’t forget to ask about the side effects!
  6. What kind of health paperwork does your family have on hand. Its important to know what kind of paperwork your family is working with. For example – my mom is the queen of copying. We have copies of literally every medical visit for a scraped knee since the 90s. But if thats not your story cause you aren’t my mother or if your family had extenuating circumstances (i.e. fire, flood, lost while moving) this is a great time to figure out where you and your family stands. So, do your parents have insurance? Shoot – do YOU have insurance? Paper documentation of vaccinations? Copies of medical records? Advance Directives? If you do have it – Great! If you don’t have this information, now you know in advance and can actually get a handle on it before an emergency.
  7. Listen, Listen, Listen! Granted this is a list of questions to ask, but I think it is just as important to really listen during these conversations. You are asking your family for information because they know a bit more than you. Seeking knowledge requires an open heart, mind, and ears.

Of course ya’ll are free to embellish or streamline this list – these are just suggestions. Just like any conversation, once it starts to move, questions and comments will happen organically. And again –  this isn’t usually a one time conversation. You may have to pick it up a few times. But I hope you liked the series and good luck with your family chats. Candid conversation and communication are the keys to growth and progress.

Good luck,

The Neighborhood Bioethicist

Pokemon, Flint, and Other Problematic Behavior.

(Hi guys! So I originally had the second installment in our Can We Talk: Family Health History series scheduled for this week. However, with the healthcare bill on the Congressional floor again, this post seemed like a better fit this time. We will be back to our regular scheduled programing next week! If you missed Part One in the Family Health History Series, check it out here.)

Have ya’ll ever noticed that Pokemon have better healthcare than their trainers? Think about it. Let’s say you have a Squirtle and it has an unfortunate encounter with a Pikachu’s thunderbolt. All you have to do is take it to your local Pokemon Center, give your Pokeball to Nurse Joy, and poof – all better. No copay, no being turned away. Now if you happen to get hit with a thunderbolt – I don’t know where you going. There apparently ain’t that many human hospitals in the Pokemon universe.

Wanna guess what’s even more shameful than the fact that the Pokemon have better health insurance than their underaged, wandering trainers ? The fact that the Pokemon universe has taken more responsibility for a potential Pokemon health crisis than the United States of America has for the Flint Crisis.

Flint still doesn’t clean have water. Now I want be realistic – the Flint Crisis is an infrastructural crisis. That means that it is going to take time to fix. We aren’t just talking about bad water. We are talking about bad water and bad pipes for an entire city. That doesn’t even address the financial implications of having to essentially re-plum a whole city. It’s going to take a decade at minimum to get Flint back to a fragment of where they used to be. And that’s assuming that the infrastructural repair is done efficiently and properly the first time. Regardless, this whole incident is ethically problematic for some key reasons.

This is problematic from a historical perspective. People of color have had and have very rough experiences with healthcare. The Tuskegee Syphillis Experiments (1932-1972), Henrietta Lacks’ stolen cells (1951-present), and Johns Hopkins Lead Paint study are just a few offenses (early 1990s). These incidents do not even address the general issues of access, institutional disregard, and health disparities among people of color. Due to the institutional irresponsibility and disregard for the citizens of Flint, Michigan, this incident has become another bioethical crisis where people of color were exploited. The health implications of this crisis are long term. This can’t be blamed on poor health practices or an unwillingness to seek medical attention. These are the incidents that prove the fears of people of color right. They show that the government disregarded their need for life’s most basic necessity and that the “system” is not trustworthy. In fact, this incident mirrors the Tuskegee Syphillis Experiments. If a group of people cannot trust the infrastructure of their community, its a recipe for chaos.

This is also problematic because of the general health implications. Flint’s water supply was taken from the Flint River. Not only was the water inherently corrosive to metal (much less to the human body), but corrosion control was not used to mitigate the issue. The citizens of Flint have essentially been poisoned. Lead poisoning is harmful to anyone, but is especially detrimental to children. Small amounts of lead poisoning can lead to lowered intelligence quotients and struggles in school. Larger amounts of lead poisoning can cause convulsions, coma, or even death. Across the board, anemia, hypertension, renal handicaps, and other permanent conditions result from lead poisoning. Here is a quote from the World Health Organization for perspective –

“The Institute for Health Metrics and Evaluation (IHME) has estimated that in 2013 lead exposure accounted for 853 000 deaths due to long-term effects on health, with the highest burden in low and middle income countries. IHME also estimated that lead exposure accounted for 9.3% of the global burden of idiopathic intellectual disability, 4% of the global burden of ischaemic heart disease and 6.6% of the global burden of stroke.”

Lastly – the federal government has not taken on the responsibility of remedying the long term effects of this health crisis. The Trump Administration has the goal of repealing the Affordable Care Act. Paul Ryan’s personal proposed health care plan is problematic because it takes the approach of preventability. Five chronic illnesses – heart disease, cancer, stroke, chronic obstructive pulmonary disease, and diabetes – are the focus of his health care plan and are listed as preventable. He suggests that if we take a preventable approach there will be no need for government spending to aid these illnesses. However, a group of people were placed in a situation where these two of these “preventable” issues were well – not prevented. There is no financial provision to account for those who were placed at a higher risk for heart disease and stroke due to the Flint crisis. Even with the new American Health Care Act on the floor – this is the perspective of our congressional leaders. This is not just about fixing the water and pipes. There has to be a plan in place to accommodate for the long term healthcare the residents of Flint will need. A generation of people will have chronic conditions for the rest of their lives for reasons that were no fault of their own. The federal government cannot ignore that.

The reality is that the Flint Crisis is a bioethical crisis. A group of people were inserted into a health system that was not only not designed for them, but also for health issues that they did not bring upon themselves. They will potentially have chronic issues for the rest of their lives. If the federal government doesn’t validate this health care crisis, they will feed into a greater systemic issue. Validation is not just about money either. It will require compassion and empathy because most of us will never experience a crisis like this. It will require stepping into someone else’s shoes. This was a traumatic experience – call it and treat it like what it is. I would like to believe that my country’s public health agenda isn’t being shown up by a Japanese children’s anime about pocket monsters – but stranger things have happened.

Hoping for a better day,

The Neighborhood Bioethicist

HELPFUL LINKS

A Simple Guide to Flint’s water crisis – Flint’s Water Crisis Explained in 3 GIFs

SOURCES

ATSDR. “Lead (Pb) Toxicity: What Are the Physiologic Effects of Lead Exposure? | ATSDR – Environmental Medicine & Environmental Health Education – CSEM.” Accessed April 18, 2017. https://www.atsdr.cdc.gov/csem/csem.asp?csem=7&po=10.
CNN, By Stephanie Smith. “Family Finally Has Say on HeLa Cells’ Destiny – CNN.com.” CNN. Accessed April 30, 2017. http://www.cnn.com/2013/08/07/health/henrietta-lacks-genetic-destiny/index.html.
“GBD Compare | IHME Viz Hub.” Accessed April 19, 2017. http://vizhub.healthdata.org/gbd-compare.
“Health Consequences of Flint’s Water Crisis.” Accessed April 14, 2017. http://nursing.advanceweb.com/Web-Extras/Online-Extras/Health-Consequences-of-Flints-Water-Crisis.aspx.
———. “What Is in the Republican Health-Care Bill? Questions and Answers on Preexisting Conditions, Medicaid and More.” Washington Post. Accessed May 7, 2017. https://www.washingtonpost.com/news/to-your-health/wp/2017/05/04/what-is-in-the-republican-health-care-bill-questions-and-answers-on-medicaid-preexisting-conditions-and-more/.
“Lead Poisoning | Pathology.” Encyclopedia Britannica. Accessed April 18, 2017. https://www.britannica.com/science/lead-poisoning.
Lewin, Tamar. “U.S. Investigating Johns Hopkins Study of Lead Paint Hazard.” The New York Times, August 24, 2001. http://www.nytimes.com/2001/08/24/us/us-investigating-johns-hopkins-study-of-lead-paint-hazard.html.
Mic, Brianna Provenzano. “The State of the Flint Water Crisis, by the Numbers.” Business Insider. Accessed April 23, 2017. http://www.businessinsider.com/flint-water-crisis-facts-numbers-2017-3.
Paul Ryan. “The Patients’ Choice Act.” Accessed April 14, 2017. http://paulryan.house.gov/uploadedfiles/pcasummary15p.pdf.
Pear, Robert. “What’s in the AHCA: The Major Provisions of the Republican Health Bill.” The New York Times, May 4, 2017. https://www.nytimes.com/2017/05/04/us/politics/major-provisions-republican-health-care-bill.html.
Rosin, Arnold. “The Long-Term Consequences of Exposure to Lead.” The Israel Medical Association Journal: IMAJ 11, no. 11 (November 2009): 689–94.
Sanburn, Josh. “Flint Water Crisis May Cost the City $400 Million.” Time. Accessed April 14, 2017. http://time.com/4441471/flint-water-lead-poisoning-costs/.
Skloot, Rebecca. The Immortal Life of Henrietta Lacks. Crown/Archetype, 2010.
“Tuskegee Syphilis Study | American History.” Encyclopedia Britannica. Accessed April 19, 2017. https://www.britannica.com/event/Tuskegee-syphilis-study.
Tweeten, Josh Sanburn, Lon. “Flint’s Water Crisis Explained in 3 GIFs.” Time. Accessed April 14, 2017. http://time.com/4191864/flint-water-crisis-lead-contaminated-michigan/.
“WHO | Lead Poisoning and Health.” WHO. Accessed April 18, 2017. http://www.who.int/mediacentre/factsheets/fs379/en/.

Can We Talk: Family Health History – Part 1

I’m obsessed with 80s and 90s R&B. Give me some Mint Condition and New Edition and I am fully in my happy place. One of my singing-and-dancing-in-the-shower favorites is Can We Talk by Tevin Campbell. If you ever have the pleasure of seeing me (preferably not in the shower) when this song comes on, I’ll probably look like this:

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Don’t judge me. It’s a classic.

It’s also the perfect way to bring up this topic of family and health. How do you talk to your family about their health? Being a 20-something, I struggle with this. I was raised under the premise that “I ain’t grown” and health is “grown folks business.” But as I got older, I realized that your family’s health is really your business – regardless of age. Your parents’ health issues can easily and usually do become yours. It doesn’t benefit anyone for you to wait until these issues manifest themselves on their own. So how to you ask the hard questions to the folks who usually ask YOU the hard questions? This is gonna be a two part answer. Part 1 will give suggestions for how to start the conversation and part 2 will focus on specific questions to ask once the conversation is started. We won’t address mental health in these posts. Thats a completely different conversation with separate issues. But don’t worry – I definitely didn’t forget about the topic! So on to the conversation starters –

  1. One way to start the conversation is to just ask. Hey, sometimes being direct is the way to go! Give your mom a call and just say, “Hey mom can we talk? I want to know a bit more about our family’s health.” Keep it simple out here.
  2. You can ease in by emphasizing that you want to know what you are getting into as an adult. If the direct approach isn’t your thing, you can always try the “I’m getting older and more responsible approach.” We all know family usually will appreciate a willingness to take on more responsibility. So you could say, “Hey dad. So you know that I’m getting a little older now and I’m trying to be a better me. But part of that is me taking more responsibility for my health. Can we talk about grandma? I know she was sick last year…”
  3. Another way is to ask a trusted member of the family who may have insight. Maybe your family won’t be ready to talk about health right away. Or maybe you are not comfortable talking to your parents/guardians because you are afraid of how they will react. If that’s the case, you can also ask a close family member or family friend that you can trust some of these questions. That’s always nice because they may have insight into why your folks may be avoiding the topic and can still be an objective source of information. Then you can gradually work your way to talking with your immediate family.
  4. Be HUMBLE. As Jesus and Kendrick taught us – be humble. Family health history is touchy, touchy, touchy. Remember, you don’t know how your family’s health may have hurt or negatively impacted the person you are asking. There could be feelings of shame for not sharing information earlier. So be humble. It’s great that you are taking initiative on your health, but make sure you think about how this conversation can effect the people you are asking.

Starting the conversation is the first part of the process. It may not solve every problem or answer all of your questions right away. But it is always worth a try. These are suggestions of course and I hope they help!

Happy Chatting,

The Neighborhood Bioethicist

Welcome to the Neighborhood Bioethicist!

Hi everyone! Welcome to The Neighborhood Bioethicist. If you aren’t just reading out of sheer support for my hopes and dreams, I’m sure you are wondering 1) what is bioethics and 2) what is the point of this blog?

Bioethics is literally what it says – the ethics of biology. It covers topics of autonomy, beneficence, justice, nonmaleficence, history, and moral philosophy. This is all a fancy way of saying that bioethics makes sure that you are treated with respect and justice. When it comes to healthcare, bioethics makes sure that you can do what you want with your body, be informed every step of the way, and ultimately live a more healthy life. And you should have access to that – because good health is a game changer.

Ten percent of me created this blog because I am tired of responding to the classic – “You have a Masters in WHET. What does bioethics even mean?.”  All jokes aside, I mainly created this blog because I am passionate about having candid conversations about life, bioethics, and health. How do I encounter bioethics on a day to day basis? What does good health look like? Why do I view healthcare this way? So part of content of this blog will be general bioethics information and commentary. We will chat about bioethics in every day life. Bioethical issues on TV, in the news, or on social media are up for discussion. However, part of this content will also talk about health and healthcare in general. As a person of color, it is even more critical that we have more candid conversations about life and health. The reality is that the historical relationship that people of color have with healthcare has been more than rocky. That means that we have more fear in our communities of the healthcare system, less information about the said system, and a lowered chance of finding good health.

Navigating healthcare and bioethics isn’t easy, but it doesn’t have to be insurmountable. At the end of the day, all of us are trying to get well. At some point, we won’t just be responsible for our own wellness – but also the wellness of others. And if we want to get well, we gotta be willing to talk about what “getting well” means.

That’s what The Neighborhood Bioethicist is about. Sitting on your front steps and just having a good talk with your neighbor, friend, or family member is informative and healing. Real conversation builds bridges and life is too short to be uninformed. So let’s sit on the steps and talk.

Come chat with me,

The Neighborhood Bioethicist