Death First! Unsurrendering to the Capitalistic Patriarchal Medical Machine and the Right to Refuse Unwanted Medical Care

Insufferable tomes explaining legal concepts are beyond the scope of this blog and frankly beyond the scope of my interest as a seriously chronically ill attorney and cannabis refugee so I will just sum up.  As was and is my right as a competent adult in this country, I decided 3 years ago to abandon the capitalistic patriarchal Western medical machine that was not helping me with my severe Crohn’s disease.  The painful invasive tests, failure to adequately treat either my symptoms or my pain and the aggregating side-effects of my medications were only causing additional medical trauma and making me feel worse.

As a Crohn’s patient perhaps my most troubling symptom was extreme bloating which makes it impossible to sleep and therefore to do much of anything.  I have heard of Crohn’s patients developing hernias from the intense bloat caused by strictures, inflammation and other partial bowel obstructions — Crohn’s patients can literally pop and I can absolutely imagine that happening.  Unless and until you experience this kind of extreme bloating you have no idea how torturous and disabling it can be; it’s a fart-joke that just isn’t funny.  In reality, bloating was just one in an array of painful and disabling symptoms of my condition in which I am no longer able to process food and which may even be fatal.

In my case I was in so much pain and GI distress when I first got my unfortunate diagnosis that I was more than willing to be a compliant patient to get some relief.  I would have done pretty much anything after having suffered with untreated Crohn’s and I took my first day’s dose of Pentasa — 8 huge horse pills — as soon as I got them, right there in the pharmacy parking lot.  I hadn’t slept in months so I took several rounds of steroids believing the promise of reduced gut inflammation and therefore reduced bloat and other symptoms.  Nothing worked.  I was even willing to start a series of infusions that would have killed my immune system altogether, causing opportunistic infections and cancer if it meant even temporary relief from my suffering.  I couldn’t afford to look far enough into the future to care about cancer and I didn’t.

When Medicaid started fighting me and I had to postpone the toxic and dangerous infusions I knew I shouldn’t have anyway, I had had enough — I packed one suitcase and traveled out of state to treat myself with medical cannabis.  Such is my legal and moral right as an adult to refuse unwanted medical treatment — essentially, as long as I can mentally distinguish my own head from a grapefruit, or can tell an ass from an elbow, no one can legally force me to do anything medically that I don’t want to do.  Competent adults are legally able to make decisions for themselves including medical decisions that other people might not like.  What this means is that your doctors can’t force medicines or procedures on you; the ambulance can’t come to your house and kidnap you; the hospital can’t keep you if you want to leave; and your family members can’t make decisions for you or tell you what to do with your own treatment and your own life, even if your decision is to die rather than accept whatever “treatment” is being proposed and it doesn’t matter your reason.  As long as you know what you are doing that’s probably good enough.

Of course, your doctors can fire you and refuse to treat you anymore if you start making waves and doing things they don’t like.  Because in the case of unwanted medical treatments, while outright force isn’t allowed, various methods of coercion are apparently absolutely fine.  At base, this is because men make the capitalistic patriarchal rules to benefit themselves, and men will be damned before they will be forced to do anything, perhaps particularly with regard to their sovereign male bodies.  And powerful men aren’t normally vulnerable coercion so powerful men are free to add coercive conditions to various “freedoms” that will only ever attach to other people and will never attach to themselves.  In practice, powerless people do have to submit to various tests and treatments they don’t want, even when those things are not helping and even making them worse such as when seriously and chronically ill people are not technically “forced” but rather financially coerced into accepting treatment in order to qualify for disability benefits.

A similar situation arises when an ill person becomes financially or otherwise dependent on friends or family members who make the sick person’s compliance to Western medical care a condition of their agreement to help.  To be fair, agreeing to take a seriously ill person into your home and life can be a frightening ordeal especially where there is the real risk that the person will die.  Questions will be asked about any so-called unattended death or where a person meets their end from a known medical condition but is not being monitored (formally surveilled) by a treating doctor or hospice team.  People without the financial or other means to defend themselves against accusations are generally afraid of the police and of Big Brother coming down on them for the smallest infractions and being “caught” with a dead body under any circumstance is not a small infraction.

People in the medical field themselves such as doctors, nurses, first responders and others may have a personal affinity if not a full-blown fetish for all things medical and, like hammers might tend to view everything as nails, these people are quick to medicalize every facet of a person’s or even a beloved pet’s mental, physical and emotional lives as potential or actual medical problems with decidedly medical cures.  These people sometimes end up charged with “helping” a seriously ill friend or family member and they can coerce the sick person til the cows come home and if the sick person needs that help there is nothing they can do to protect themselves or to prevent becoming unwilling consumers of medical goods and services in exchange for housing, food and the necessities of life, even where those medical goods and services are not helping them at all, and even when they are making things worse.

In my own family, my parents are a doctor and a nurse and my younger brother was born with a congenital heart defect which left him intermittently partially or totally disabled for his 21 years of life.  He was too sick to ever make an independent home or life for himself and was forced to live under the “care” (read: control) of our parents until he died.  In fact, I believe he ultimately committed suicide to get away from them and his oppressive medical “team” that were constantly forcing procedures, surgeries and medications on him that were ineffective to improve his life and which he was therefore either ambivalent about or flatly didn’t want.  What he did want after living under this medicalized oppression for 21 years was to get healthy enough to make his escape and his “suicide” was accomplished when he agreed to the risky and medically-unnecessary surgery that was promised to increase his energy and stamina (and ability to leave my parents) but which ultimately ended up killing him.

I spoke with him about this at length and he had decided “enough” when his heart was failing for the last time following numerous complications from his final surgery.  Our parents wanted him placed under “suspended animation” or a medically-induced coma indefinitely while the “team” — the team which included them on some level and was therefore frighteningly unethical — procured a new heart and performed a heart transplant.  As if being placed in an indefinite medically-induced coma is both without complications of its own and something any reasonable person would want.  And as if a heart transplant was unambiguously desirable in the first place when “success” means the person is still alive in 5 years even if “living” is reduced to living with constant disability and pain, frightening complications and torturous medical interventions for the rest of the patient’s vastly foreshortened life where 40% of heart transplant recipients die within the first 5 years:

Survival — Approximately 85 to 90 percent of heart transplant patients are living one year after their surgery, with an annual death rate of approximately 4 percent thereafter. The three-year survival approaches 75 percent. (See “Prognosis after cardiac transplantation”.)

The outcome of patients undergoing heart transplantation for complex congenital (from birth) heart disease is similar to that of patients with other forms of heart disease. The one-year survival rate in people with congenital heart disease is 79 percent; at five years, the survival rate is 60 percent.

My brother had had enough.  This Frankensteinian medical protocol was being forced on him against his will and when he asked me what I thought about it I told him the truth which is that ultimately, we are each of us alone in the world to make these kinds of decisions for ourselves, and that he didn’t have to do it if he didn’t want to.  And that is the ultimate truth isn’t it?  It was beyond avoiding consequences at that point, either path was going to end badly and he just had to pick the one he could “live with” even if he ended up dying in the end.  I could tell he was relieved to hear this perspective — that it was his choice and his choice alone — which in our family and in any medicalized setting would be and was completely foreign and utterly taboo.  And he did not want to do it.  The thought of it was disgusting, exhausting and terrifying to both of us, and the fact that our own parents would not only suggest but fully expect him to comply with something so boldly megalomaniacal may have been the most unsettling part.  The fact that our parents were on his “team” in the first place and no one seemed to have a problem with that was and still is deeply troubling to me.

As it turned out, due to his heart failure, all his organs began to catastrophically fail so there was nothing that could’ve been done anyway.  The suspended animation would’ve had to remain “suspended” forever or until they found a cure for death, and if there was any consideration about cryogenically preserving (freezing) his head they were smart enough not to tell me about it.  He was finally allowed to die and when he did I was beside him spooning with him in his bed and told him softly in his ear “it’s okay to go.  It’s okay to go.  It’s okay to go.”  My mom had been sleeping just a few steps away and came over looking frantic, horrified and managed a “sweet Jesus.”  She seemed stunned when I, her 24-year old daughter, with pure conviction and a steady, strong voice which came from I-know-not-where stared her down and told her evenly, Tell him it’s okay.  You tell him it’s okay to go.  You say it right now.  Just in case he was still “there” or somewhere in the room I wanted him to hear it from her and fuck her, her 2-year nursing degree and her sweet Jesus anyway.  And she said it.  Hearing the death rattle, my dad came in and took his pulse and waved a finger in front of his eyes to confirm that he was dead and he was.  There was a Do Not Resuscitate order in his file and thankfully it was respected.  I felt my job was done there and I went into an adjoining room, laid down alone and wondered where if anywhere my brother was now that he was gone.

In my own case, since I have been chronically ill I have received no help or offers for help from anyone including my own parents.  If either one of them did offer to help me any help would surely be conditional on my seeking and exhausting all conventional treatments for Crohn’s disease and then some — it is frankly terrifying to imagine what either one of them would have in store for me if I was ever under their “care” (read: control) and what they would come up with if they tasked themselves with curing my incurable disease.  And doctors and nurses are insane enough to believe this is possible — that they could cure a disease that Western medicine has deemed incurable, and by using Western medicine to boot.  Alternatively, physically and psychologically torturing me until I pretended to be better to get the torture to stop and started (somehow) earning money again would probably be good enough.  Because capitalism and patriarchy.  Having either one of them on my “team” would in fact be highly unethical because it’s known to be dangerous and not in the best interests of the patient to have close relatives who are unable to be objective by definition involved in their care, but I already know it would be allowed and no one would step in or stop it just like no one objected or tried to stop it when they inserted themselves into the care and treatment of my brother.

But unlike my brother who had the care and support of ME I do not have anyone.  Considering my situation I need a ME to help me and advocate for me but I do not have a ME — someone with the ethical, moral and indeed foundational conviction that there are some lines that should not be crossed and some lengths to which one should not be forced to go in “treating” a disabling condition that is known to be untreatable and where the treatments cause escalating and aggregating side effects up to and including death.  I need someone like ME but in reality I only have myself and at some point I will likely become too weak to fight anymore whether it’s fighting the ravages of an incurable and intractably painful and disabling disease or fighting the capitalistic patriarchal medical machine and its offensive rage-boner for everyone who is sick.  And that includes fighting my parents if they ever decide to talk to me about what’s going on or if I ever decide to try to talk to them.  My own parents have a rage-boner for me now — if they feel anything for me at all — just like they had for my brother.  The only thing that has probably saved me from them trying to insert themselves into my “care” to date is geographical distance and the fact that as an old-school Western doctor and nurse they probably don’t know the first thing about Crohn’s disease, how disabling it is or even that Crohn’s or any confounding autoimmune disease is actually real.  My brother’s condition was at least something that made sense to them and this surely will not.  In fact, they probably think I’m lying about it and that if I am surely a psychiatrist would help.  As if psychopharmaceuticals don’t have their own troubling side effects and as if there are no issues with sending a chronically ill or any female into what is likely the heart of darkness itself: Western psychiatry.

This is the state in which I find myself and considering my family situation which is unhelpful and sadistic on its best day, this is absolutely the worst thing that could’ve happened.  I honestly cannot think of anything worse than being chronically and incurably ill under capitalism and patriarchy, with a Western doctor and nurse for parents, ambivalent or similarly Western-medicine enamored friends and family, no personal resources, and without a ME to help.