Crohn’s Disease and Euthanasia. Medically Assisted Suicide for Intractable Pain and Symptoms in “Nonterminal” Illness

This man, Jason (Jay) Franklin, has Hirschprung disease, a congenital birth defect in which the colon and possibly also the small intestine are not properly enervated causing bowel obstruction and inability to pass stool.  He had his first abdominal surgery at 14 days old which left him with a life-long colostomy bag and has had, in his estimation, 15-20 or more additional abdominal surgeries in his life to treat obstructions and iatrogenic illnesses from the treatments and surgeries themselves as abdominal surgery and manhandling the intestine actually cause bowel adhesions that require more surgery and so on.  At the time this footage was taken, he was on opiate pain relievers and Valium to dull the severe pain and physical and emotional distress of his disease which medications leave him cognitively impaired and he still has severe symptoms that leave him disabled from working and which prevent restful sleep.  He is also still unable to digest most food and is unable to care for himself and lives with his mother.  In this documentary, he is observed in his ordeal to apply for and be accepted to a Swiss euthanasia program called Dignitas where he intends to take his own life due to the intractable pain and incurable symptoms and progression of his disease.

While this man does not have Crohn’s disease, his condition is similar in many ways including severe intractable pain, gut issues leading to malnutrition, malabsorption and dehydration, and the incurable nature of his illness which Western medicine nevertheless does not consider terminal because there are “treatments” available when his bowel becomes obstructed, when fistulas open between his bowel and bladder causing him to urinate feces, and when he develops life threatening infections and sepsis.  Swiss euthanasia clinics appear to be the only such services available to nonterminal patients who suffer from intractable pain, and this video documents his attempts to navigate the financial and bureaucratic minefields standing between him and his chosen escape from his suffering: assisted dying, otherwise known as euthanasia or medically assisted suicide.

In the comments to the above video, which was reposted on YouTube, Jay and at least one of his friends appear to be commenting and the friend has confirmed that Jay died 5 months ago from a bowel infection for which he refused treatment.  Although he was accepted to Dignitas and paid significant out-of-pocket costs as well as jumping through months of bureaucratic hoops for the privilege, in the end he did not use the service which appears to be quite common.  Apparently, just knowing that a relatively quick and uncomplicated death is available often comforts patients enough that they are able and willing to continue living for some time before using the service if they use it at all.

I have researched the Dignitas service as it relates to my own condition, Crohn’s disease, an incurable and progressive autoimmune disease that causes intractable pain and dangerous gastrointestinal symptoms like bowel obstructions and fistulas, and causes malnutrition and dehydration as well as systemic effects like arthritic joint pain, fevers and malaise.  And like other confounding autoimmune diseases, Crohn’s does not respond, respond well, or respond for long to conventional Western medical treatments that cause “side-effects” — meaning iatrogenic illness and injuries — including opportunistic infections, cancer and death.  Apparently, several Crohn’s patients have used the Dignitas and related services in the past like UK Crohn’s patient Marie Lopez who in 2017 sought to end her suffering at the Lifecircle clinic in Basel, Switzerland.  In her case, as a mature woman who has suffered with Crohn’s for decades, including the last 8 years spent on morphine to manage her intractable pain, she had been carrying on reasonably well with powerful pain relievers and full-time (35 hours/week) home care until UK social services cut her living assistance down to a couple of hours a week.

Dependent on the home care for her basic needs like cooking, cleaning and shopping, she then liquidated her assets and spent all available resources to fund the care herself but unfortunately, as she is unable to work, her resources were quickly depleted leaving her without adequate care.  At that point, after a lifetime of dealing with the medical and bodily horrors of Crohn’s disease, and facing the rest of her life with inadequate social support and care, her disease and her life became unbearable.  The above-linked article quotes a documentary filmmaker challenging such benefits cuts who has said about Marie’s situation:

she is a double victim – of a debilitating illness and a brutal ­bureaucracy.

And I know exactly how she feels.

In my own case, I had to travel across the country and pay out-of-pocket for lodging and treatment with medical cannabis, which according to my research and experience is the only medication effective against the chronic pain, inflammation and debilitating systemic and gastrointestinal symptoms of Crohn’s disease.  For the first 2 years after my diagnosis I was more than willing to be a compliant patient and take the conventional treatments which were not helping much or for long, and in fact I was getting progressively worse.  After paying out-of-pocket for conventional treatments for 2 years, I applied and was accepted for Medicaid, after which my doctors fired me because they did not accept Medicaid, and the first thing Medicaid did was to deny the conventional treatment I was already on!  Similarly to Marie Lopez’s situation where her homecare benefits were cut, my own bureaucratic nightmare had begun and at that point, with no doctors and no treatment, I knew where I was headed and it wasn’t good: in and out of the hospital, unable to control the violent pain and symptoms of untreated Crohn’s disease and fighting with Medicaid to approve dangerous toxic treatments that didn’t work anyway and which caused significant side effects of their own.

Rather than simply accept that fate, like Marie Lopez, I too chose to liquidate my assets and spend every last personal resource trying to maintain my health, life and home but in the end it was too heavy a burden for either of us to shoulder alone.  In her case, she can no longer pay for private homecare and due to her crippling fatigue and symptoms is unable to shop, cook or clean for herself and her quality of life has vanished.  In my own case, I am facing looming homelessness as I have spent nearly every dollar I had and have been unable to get family or government assistance in paying for my cannabis treatment, dietary supplements and lodging in a cannabis legal state.  And due to the extreme stress of poverty and looming homelessness, my new-found and hard-won improved health and reasonable quality of life are beginning to vanish.

Of course, when people are faced with the probability of living into the foreseeable future with little or no quality of life, they naturally begin to contemplate their escape; having no other options, their thoughts often turn to suicide and assisted dying which has recently become legal in several US states under certain circumstances, usually being an option only for the terminally ill.

The cultural conversation around assisted dying for seriously ill patients has advanced in recent years, but while euthanasia for the terminally ill is relatively well accepted, the same cannot be said for patients with intractable pain and incurable, progressive diseases which are not recognized to be imminently and unavoidable fatal.  In the case of Crohn’s disease, I think there is an excellent case to be made that it is in fact fatal, where unchecked inflammation leads to bowel obstructions, fistulas and a host of complications that can easily lead to death if not successfully treated, and conventional treatments are not only largely ineffective, they also cause frightening side effects that can cause death on their own.  The natural progression of the disease into stricturing or penetrating requires constant and life long medication, vigilance and medical interventions including surgeries to manage, but bowel surgery is generally contraindicated for Crohn’s patients because abdominal trauma and manhandling the intestines causes adhesions which require more surgery and so on.

But how can anyone reasonably say that a condition that would naturally lead to death without constant medical interventions is not inherently fatal, especially when most American citizens have a constitutional right to refuse unwanted medical care and where there are plenty of reasons to refuse conventional treatment that not only doesn’t work but is well-known to make patients worse?  In other words, the natural progression of untreated Crohn’s disease is that it is in fact fatal and to say otherwise implies that it is actually constant medical interventions which are both natural and unavoidable.  

As a Crohn’s patient who is reasonably critical of Western medicine, and where I observe that constant medical interventions are in fact man-made (not natural) and where complex social (not natural) engineering has been put in place to assure compliance, I must disagree with the implication on its face and this is a critical point: would the death of an untreated Crohn’s patient from his or her disease be legally or medically classified as an unnatural death meaning suicide or homicide?  Of course it wouldn’t, and implying otherwise in the context of coercing unwilling patients to treat or discouraging them from escaping their suffering through medically assisted suicide is reprehensible and incorrect.

Even if it has yet to be recognized as the terminal illness it probably is, Crohn’s is a brutal, debilitating disease that robs people of their dignity where they are no longer able to control their bowels, are limited in or incapable of performing self-care, and which requires the long-term care, concern and financial resources of others if Crohn’s patients are to maintain any quality of life or even to survive.  Many Crohn’s patients simply do not have this type and degree of social and familial support and so are unable to maintain a reasonable level of health or a reasonable quality of life, and it is no consolation to us that we could conceivably continue on in this intolerable state for years and decades into the future, especially when Crohn’s, as a progressive disease, can only be expected to get worse.

The most infuriating additions I have seen to the euthanasia conversation, unsurprisingly, come from Western medical doctors who simply refuse to accept that Crohn’s disease is notoriously unresponsive to conventional treatment and who refuse to accept or respect Crohn’s patients’ self-reports that the intractable chronic pain and debilitating symptoms of their disease are intolerable and that their grossly diminished lives are simply no longer worth living.  One doctor responded that a Crohn’s patient was exaggerating or being unreasonable when he sought assistance with a euthanasia application, where the patient was unsatisfied living his life without a rectum and with an ostomy bag hanging off his abdomen to collect his waste for the rest of his life, even though the man reported that he simply could not continue with that type and degree of daily humiliation and gruesome medical intervention into the indefinite future, not to mention the ongoing symptoms and complications of an incurable and progressive disease.  As a fellow Crohn’s patient, I am sympathetic to this man’s plight and I agree with his assessment of his own future, a future all Crohn’s patients share — he very likely has no future, or not much of one, where he will probably never get any better than he is right now, or not for long, and his condition will almost certainly get worse.

How dare a fucking doctor make these kinds of judgments about patients’ quality of life when doctors, as healthy people, have no idea what the patients themselves are experiencing and judging by the response of other healthy people like unsympathetic friends and family probably don’t care much anyway.  And who as Western medical doctors themselves are fundamentally biased and predisposed to exaggerate and lie in the other direction — in this case, to lie and exaggerate about Western medicine’s ability to treat Crohn’s while simultaneously downplaying the negative effects of gruesome and ineffectual medical interventions on people’s lives, health and wellbeing.  Western medical doctors are in deep denial — and are heavily invested in denying — that ongoing medical interventions themselves cause medical trauma and iatrogenic injuries and illnesses and that these additional traumas in themselves can be debilitating and destroy people’s lives.

And doctors are financially invested in creating life-long patients out of sick people who are getting nothing out of the treatments which often make people worse, requiring even more medical interventions and often causing increased disability and even death.  And frankly, considering the increasingly violent and insane medical interventions most Western doctors are more than willing to inflict on their patients, it seems clear that many doctors either enjoy hurting patients or they are simply egotistical megalomaniacs who do not or cannot accept that there is a limit to what Western medicine can and should reasonably do and that therefore, patients must have a right to, at some point, say no.  And, enough is enough.

But patients do have that right at least in the United States, and patients do not in fact have to accept unwanted medical care, but at this time we do not necessarily have the right to seek assisted suicide when we have reached the ends of our ropes and the ends of our personal ability and resources (including mental, emotional, physical, social and financial resources) to deal with the chronic pain and progressively disabling symptoms of our disease.  But as the above video demonstrates, even if chronically ill people suddenly had the right to seek legal medically assisted dying, the bureaucratic obstacles in our way are designed to thwart our final attempts to get relief from our suffering.  And cruelly, the most accepted method of assisted dying for ill patients is to swallow toxic drugs that cause severe nausea and vomiting and require an antiemetic to keep down, where intractable severe nausea and vomiting are some of the more horrific facets of Crohn’s disease which most of us have spent many years and many resources trying to escape.

To expect particularly Crohn’s patients to die that way is insensitive to the extreme, bordering on malignant, evincing the desire of Western medicine to take a final painful jab at extremely ill people who have gone through every level of physical, mental, emotional, financial, medical and bureaucratic hell in order to achieve their final peace.  This is the general environment that seriously and chronically ill people live in every day, where we are thwarted, disbelieved and abused by Western medicine and healthy society at large.  And in the case of Crohn’s and other allegedly nonfatal diseases, we are fully expected to continue living in this hateful medical and social environment and consuming unwanted and/or ineffective medical goods and services into the foreseeable future with no relief in sight.

At this point I am unable and unwilling to manage my contempt for Western medicine and Western medical doctors, nurses and others who have every reason to lie and who do lie about what Western medicine is able to offer Crohn’s patients to manage our intractable chronic pain and symptoms.  And I and all chronically ill people are only in for more of the same where Western medicine has determined itself to be the gatekeepers of death itself, where we have to be “good patients” and sufficiently compliant, docile and convincing to get the coveted “green light to go” if we ever attempt to seek legal medically assisted dying as the final, permanent end to the unrelenting agony of our chronic, untreatable and progressive disease.

 

 

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