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-