Most of us are now familiar with the Jahi McMath case (google it: I can’t bring myself to rewrite all the painful details). I’m taking a break from my usual rants about living in paradise and dating disasters (sorry, my usual fun self will be back soon) to discuss it because I’m disgusted by the lack of factual information surrounding this case. The latest reports from the media indicate she is “improving” and getting “nutrition” from a feeding tube (which was recently placed by an unidentified “Doctor” despite the fact that feeding tubes are generally not placed in people who have been declared dead by a coroner). I’m keeping my terms non-technical so that more people can understand and (hopefully) benefit.
Why am I following this so closely?
I’d like to speak to the “nutrition and rehabilitation” piece of the story as it somewhat relates to my job and extensive experience in the field of brain injury.
I am a traveling Speech-Language Pathologist who has worked in some of the best medical facilities in the world and some of the worst. I specialize in the diagnosis and therapeutic treatment of dysphagia (difficulty swallowing). I am directly in the crosshairs of patients and families when someone has suffered a neurological insult like a brain injury or a stroke and their loved one has lost their ability to eat and drink “normal” (or any) food and liquid. I’m the first person they yell at when they are NPO (“Nil Per Os”-in other words, they can’t consume anything by mouth) and the poor fool the nurses page every time a patient insists they can eat whatever they want because they think they know more than all the Doctors, which means they DEFINITELY know more than this therapist (who only studied speech, language, and swallowing for 6 grueling years).
Despite this, I love my job and am good at it. I have empathy for my patients and can relate to their frustration given that I too turn into a 6-headed Dragonbeast when I’m hungry. I have become an expert in the art of conveying technical information in a way that patients and families (at least the ones that have half a brain) can understand. I pursue the latest research and continuing education to provide better service. I say this not to pat myself on the back but to give you some background in case my blunt writing style and crazy sense of humor gives you the impression that I suck at life or don’t care (it happens).
Often, the medical team in a hospital consults me to determine if there are any speech, language, or swallowing therapeutic interventions that can be provided. For the purpose of this post, I am focused on swallowing. This could include anything from modifying a patient’s food/liquid consistency to swallow strengthening exercises (yes, there are exercises for this…now you know). Some people benefit from a feeding tube while their swallowing and other functions recover.
Often, a family of a comatose patient insists on every possible specialist even though there is nothing to do but watch and wait. I occasionally get consulted anyway even though the Physicians are not stupid (well, most of them aren’t anyways) and know there is nothing I can do. This is where the shit hits the fan. I frequently have to explain that if a patient is not awake/alert enough, they cannot safely eat, and would not be able to participate in any kind of therapeutic exercise whatsoever. I’ve had loved ones insist that I dump food/liquid down their comatose family member’s throat and I calmly (or sometimes not so calmly) point out that if I (or they) shove food/liquid down a person’s throat who is out cold, it could result in death in someone with no swallow reflex and/or ability to protect their own airway. Once they hear from multiple sources, most families begin grieving and accepting. Some make the choice to continue life support, some do not. These are difficult decisions that should center around what the patient would want, their medical prognosis, etc…Again, these patients (unlike Jahi) have at least some brainstem function. No one has ever “woken up” from brain death (which is NOT a coma or persistent vegetative state-google it. Much has already been written on this).
In addition to the patient being awake/sufficiently alert, there are many other criteria for providing swallowing therapy. Evidence-based or ethical practice does not include providing therapeutic swallow strengthening exercises for someone who is in a terminal degenerative state. For example, if the patient has a disease that causes their body/neurological functions to decline, the progress made (if there is any) with swallow strengthening is going to be negated by the natural progression of the disease. Depending on the situation, we sometimes try and help a patient maintain what they already have, but that is different from active strengthening.
How does all of this this relate to Jahi’s case? Not well as she is already dead. The patients I see with severe brain injury at least have some chance of waking up someday and needing my services, again, because their brains are often injured and still have some brain stem function, not dead like Jahi’s (hate to keep repeating but it seems the media and much of the public have “jumped the shark” and can’t grasp the difference). Even then, it can be a long and difficult road as swallowing is one of the last things to recover. I’ve had great success with the toughest of cases, but there are still countless others out there that never will never regain full function despite extensive therapy due to the severity of their injury.
In plain English, even if Jahi were to become the first person in history to awake from brain death, it would take a second “miracle” for her to be able to eat or drink on her own given the fact that her brain is gone. Swallowing is complicated. It involves three phases which are each controlled by a different neurological mechanism. If you can’t swallow, you are at risk for aspiration (food/liquid/even bodily secretions like saliva going into your lungs instead of your esophagus-“the food tube”). Stuff in your lungs can lead to serious complications including pneumonia and death.
So why am I going on about this? Because when I read that Jahi’s family and attorney think “nutrients” are going to help her condition, this was the last straw for me as a rehabilitation provider. Based on the clinical determination of brain death by many experts, she is tragically beyond needing liquid nutrition via a tube and I have no idea what kind of “rehabilitation” can be ethically provided.
I’m finally getting to the most important point (I know it took awhile). Many people are unaware that your body goes through some amazing changes when dying. For example, the ability to metabolize food often decreases which results in the patient not wanting to eat. In response, there is evidence that more endorphins (your body’s natural painkillers) are released. Really think about that. How badass is it that our body can give us natural painkillers when we decline…IF WE HAVE THE COMMON SENSE TO LET IT. Numerous studies suggest that complications can arise from tube feeding and forced feeding which interfere with these natural and inevitable processes.
Unfortunately, no matter how much education is provided, nutrition, food, and liquid is one of the most difficult issues people face, particularly when they are actively dying. Family members frequently lose all rational thought and yell at me: “Grandma’s gotta eat no matter what (insert cuss words here) !!!” Food is often emotionally associated with comfort, nutrition, and well-being. I hope at least one person reads this and separates their emotion from the hard, scientific, and undeniable fact that interfering with the natural process of dying by forcing food/nutrition can negatively interfere with the health of the body and can actually result in more degeneration. This is a separate issue from feeding and nutritional support in people who are not actively dying and might benefit from a feeding tube while recovering. I’m not sure exactly how forcing nutrition will play out in Jahi’s particular case as I am no Doctor and she is no longer alive, but something to think about.
This is a story for another time, but I lost someone I loved with all my heart when I was in my twenties. I wasn’t in the medical profession at that time so I know firsthand how scared, in denial, and naïve one can be. When Paul (not his real name) was admitted to a hospice, I couldn’t accept that meant he was dying and frantically begged his nurses to do anything they could to “help” him recover. Finally, one looked at me, rolled her eyes and said “honey, he’s dying. We can’t fix that.” A bitch move on her part and not the exact wording or approach I would use now that I work in healthcare, but something inside me finally snapped when she said that. I’m grateful to that nurse for allowing me to start the inevitable grieving process (which I don’t wish upon anyone) rather than painfully prolong it. Instead of wasting my time arguing and hiring an attorney, we spent his precious final moments together. His family and I loved him so much we respected his wishes to not live a “life” that would require adult diapers and 24-hour care in a facility and knew, despite our pain, that it would be selfish to keep him alive for our own benefit. There’s been a lot of commentary from the McMath family attorney about their wishes (not what they think Jahi would want) and how “cold” Oakland Children’s Hospital is because they repeatedly told the family she was “dead.” Sometimes being “cold” is what can finally help someone come to terms with the grieving that must take place.
I am exhausted from being upset by what this case could mean to the future of medical care. My heart goes out to Jahi’s family whose statements are shrouded in grief that they have tragically misdirected. I have profound disrespect for their attorney who has done nothing but facilitate an immature pissing contest with a well-respected medical institution that will not improve the inevitable outcome of a tragically deceased 13 year old girl. Surely, it’s no coincidence that he is a board member of Consumer Attorneys of California, the main group funding the ballot initiative to lift the $250,000 cap on medical malpractice awards in CA.
I’m now choosing to focus my energy on encouraging healthcare providers (only rational and educated ones, the “Terri Schiavo Foundation” doesn’t count) who step forward and share their perspective as the media has so far done a reprehensible job of explaining scientific facts and have at times stooped so low as to make it a “race” issue. I think there are four critical things everyone could learn from this. Even if you already know it, review:
1) Educate yourself about the dying process: A good start is the following document from passages.org: “bury the top ten myths about the dying process.” I’m not affiliated with this organization, but think they do a great job of concisely explaining difficult issues. Everyone dies eventually. I remain amazed that there is little willingness in our culture to talk about something that happens to everyone. It shouldn’t be a taboo subject.
2) Advanced healthcare directive: Write one (an attorney can help or you can google free templates). Talk to your kids about what they would want. Sadly, this case has reinforced that not everyone outlives their parents.
3) What is recovery? What does a successful “recovery” truly mean to you? People toss that word around, like if they just wake up that is “recovery.” For me, if I wake up from a coma but remain unable to breathe on my own, wipe my own ass, talk, eat food, and tell you to piss off, require 24 hour care, and there is no evidence that I will improve significantly over time, that is not recovery and I’d rather be dead. My family is well aware of this.
4) Be nice to fellow health care providers: A lot of people think they can look everything up on the internet and be a Doctor or other health care provider without the extensive education, mentorship, and hands-on experience we sacrifice our time, $, and often relationships to receive. It’s beyond annoying when people don’t understand we wouldn’t make those sacrifices if we didn’t care or have the ability to help others. We should support each other (except providers that are patently ridiculous) since no one else is. I’m going to focus on the true purpose of healthcare instead of the media craptastrophy that has occurred and offer encouragement to the staff of Oakland Children’s to do the same as they are probably losing it from dealing with this spectacle at work for the past three weeks.
DISCLAIMER: I am not a Doctor (not even close) and nothing in this post should be construed as medical advice. Just one blunt person’s perspective who happens to research end of life issues way more than she should…
P.S. Thank You to DocBastard. I found your blog while researching this case and am glad that an actual Doctor (who does a much better job of explaining the medical complications of this situation than I do) is providing clear and factual info about this case. I don’t know you, but your posts inspired me to write instead of waste time fuming about the media and the McMath family’s out of control attorney. Now I can stop reading crappy media articles about this case that make me question my faith in humanity and get back to my funny/snarky posts that much sooner.
Thank you for reading! I welcome comments or you can email me at: brokedowninparadise@gmail.com especially if you have a broke down story to contribute. I can’t publish everything but read all my emails and will certainly consider it if it’s hilarious.
Image may be NSFW.
Clik here to view.
Image may be NSFW.Clik here to view.
