‘I wish to stop living when I choose’ – Marie Fleming

Tom and MarieThe following is Marie Fleming’s witness statement to the Irish High Court, seeking to establish her right to die with peace and dignity. We have deleted details of Marie’s personal background and family that are unrelated to her illness and her legal argument, and we have deleted names of doctors and solicitors where they appear.

You can read here about Marie’s inspirational evidence in the High Court, where she calmly explained that she was at peace with the world, and that she was ready to die with dignity.

In this more complete affidavit sworn before she gave evidence, Marie describes the course of her illness to date, her current condition, the expected course of her disease, and her wishes for ending her life. She concludes:

“I do not wish to end my life immediately. However, I know that there will come a point when I will wish to do so. That time may, for example, be when I can no longer tolerate the pain in which I find myself; when I am wholly dependent on others for basic feeding or hydration so that someone has to put a sponge to my lips to give me water; when I have completely lost bowel or bladder control or both; when (as is possible with my condition) I lose my eyesight. I would in these or similar circumstances, arising from my terminal illness, wish to end my life. However, because of my disability I am unable to end my own life without assistance and, given the inexorably progressive nature of my illness, I will never be able to do so. I will therefore require assistance to end my own life.

I wish to stop living when I choose and I will know when that time is and, at that time, I will request that my life be ended. I know that my partner, Tom, is a person who would be willing to assist me in ending my own life at a time I decide, in order to reflect my wishes and to end my suffering. I want to know that I will be able to end my own life and that any person who might aid or abet me in the exercise of my autonomous free will will not face criminal prosecution were that person to help me to end my life with my consent and in accordance with my express wishes. I want to know that I can die at a time of my choosing in Tom’s arms and with my family around me, without the fear that any person would be subjected to criminal prosecution.”

Witness Statement of Marie Fleming

I, Marie Fleming, of [address] Co. Wicklow make the following witness statement: I am the Plaintiff in the case of Fleming v Ireland and others and I make this statement from facts known to me, save where I state otherwise and, where that is the case, I believe those facts be true. The nature of my claim is set out in my Statement of Claim and is furthermore clear from the matters set out in this Witness Statement, the aim of which is to inform the Court of the circumstances giving rise to the case and the special urgency of the same for me.

Personal background:

[deleted]

The course of my illness to date:

I was diagnosed in 1986 as suffering from multiple sclerosis. I have therefore been living with and suffering from that condition for approximately 26 years.

I believe from the advice given to me by my medical advisors that multiple sclerosis is an immune-mediated inflammatory disease that attacks myelinated nerve cells known as axons in the central nervous system (CNS), destroying the myelin sheath in which the said nerve cells are covered and affecting the axons of the nerve cells in variable degrees. In most cases, I believe and am advised that the disease follows a relapsing-remitting pattern, with short-term episodes of neurologic deficits that resolve completely or almost completely. A minority of patients experience steadily progressive neurologic deterioration. I believe that although there are some medications that can modify the progress of the disease in its early stage, there are no drugs to treat the advanced stages and there is no cure.

After my initial diagnosis, my condition followed a relapsing-remitting pattern and I had periods of ill health followed by periods of feeling well. However, with the passage of time the nature of my illness changed to become progressive in nature and I began to lose control of my limbs.

I lost the use of my lower limbs first. I noted a change in my gait, whereby my foot started to drag. I developed weakness and spasms, during which my leg would go rigid so that getting back into position was difficult. I then developed weakness of my back, from which time I became increasingly dependent on the care of others. Since approximately 2010, I have not had the use of my hands. Even the smallest adjustment of the position of my arms and hands needs to be made by others.

I have been advised by my treating doctors that my illness is now in a terminal phase. While my life expectancy cannot be determined with absolute accuracy, I believe and have been advised that I may die from my disease within a number of months, though I may have a year or two of life. I have appended to this Witness Statement three reports from Professor [name], my treating consultant neurologist, dated 17 July 2012, 24 October 2012 and 12 November, marked with “MF1”, “MF2” and “MF3” respectively. I have identified these reports to [name], Practising Solicitor, as being the relevant reports, prior to him witnessing this Statement.

My current condition:

My current neurological condition is that I am unable to walk or to use my lower or upper limbs. I have no bladder control. My speech and swallowing are now significantly affected. I frequently choke when swallowing liquids and can suffer choking episodes, even when not attempting to swallow. Such choking episodes are extremely exhausting, frightening and generally distressing.

The nature of my speech has changed significantly although I remain able to communicate. I require assistance with all aspects of my daily living.

I spend my days in a wheelchair. I am only mobile in a wheelchair, although I can no longer propel myself in the wheelchair because I am unable to control it. I therefore require to be pushed anywhere I wish to go. I would be unable to control an electric wheelchair.

A normal day is spent as follows: I wake at approximately 8 a.m. and am given my tablets. If I wake earlier I am unable to help myself in any way and must wait until I have assistance. At approximately 9 a.m. I am assisted from my bed; I am toileted, fed, washed and dressed. Because of the nature of my condition, when I have a shower, it takes approximately 2 hours. Having been toileted, washed, fed and dressed, I spend the entire day in my wheelchair. My activities are limited to listening to the radio, looking at my garden and on occasion, dictating for short periods.

I am cared for by my partner and by a series of carers, who assist me with every aspect of my daily living. I find sitting in a wheelchair all day very uncomfortable and that contributes to the pains I experience.

I require to be repositioned a number of times each day and this is done by my partner Tom or one or more of the home helps who visit me during the day in order to assist me. On occasion, I am attended by assistants who do not know how to reposition me correctly. In general, I need to be repositioned 3 to 4 times each day.

The process of preparing for the end of the day commences at approximately 6 p.m. and I am in bed from 7 p.m. until the following morning.

I suffer from significant and frequent pain from a number of sources. Some of the pain that I suffer is neurological in nature and is characteristically a burning type of pain. I suffer neurological-type pain in my hip, my legs, my hands and the back of my head. Other pain is non-neurological and associated with muscle weakness or spasm or with my position or with sitting for prolonged periods of time. Each form of pain is intense, sometimes almost unbearable.

I suffer significant head and neck pain. I suffer significant lower back pain. With the loss of control of my arms, I suffer severe arm pain associated with the weakening of muscles in my limbs. My buttocks become very sore with extended periods of sitting.

I suffer frequent spasms in my upper and lower limbs. These spasms are extremely painful and debilitating in nature and occur at least on a daily basis. When they occur, the affected limb becomes rigid and intensely painful and when assistance is provided to me during a spasm, it is necessary to move the affected limb very gently and slowly, gradually easing the limb back to a relaxed position and easing the pain. I have great concern that I may suffer a fracture as a result of over-vigorous movement of an area in spasm. I take medication for spasms: the tablets last approximately 4 hours and then their effect wears off.

I also suffer painful spasms in both my hands and I am required to wear special splinting gloves in order to prevent such spasms from occurring.

I suffer burning sensations at my temples very frequently. I also suffer stabbing pains in both of my eyes at least three times each week.

I am taking maximal amounts of analgesia in the sense that when I increase the doses of analgesia beyond the levels I usually take I become very sleepy, almost comatose, and find it difficult to function. Therefore, while it is possible to increase my pain control somewhat, I find that the price of increased pain control is to further diminish what little quality of life I have.

I also suffer a recurring perception of moving flashing lights and when this occurs, I find it very debilitating. I cannot watch television for any long periods of time, because it precipitates this unpleasant sensation. When this occurs, I have to be helped to lie back down and close my eyes.

I can, at the present stage of my disease, only control the movement of my head. Even though I retain some head control, I cannot keep my head upright all the time.

I am required to take 20 tablets daily. These tablets include antispasmodic tablets, tablets for bladder control, tablets for pain relief and tablets for constipation (constipation being a complication of my underlying condition). I believe and am advised that all treatment being administered to me is for the management of symptoms and no treatment can or is administered to me for the purposes of treating or improving my underlying condition.

In turn, the medication has side effects, including a dry mouth, hot and cold flushes, heart palpitations, drowsiness, nausea and sleeplessness.

Because of my extremely poor bladder control, I became incontinent and I therefore have a suprapubic catheter in place for the purposes of voiding urine.

While I attempt to use my voice as often as possible, I am conscious that my speech has changed and is continuing to change. This is associated with the gradual loss of control of the muscles of my neck.

As mentioned, my ability to swallow has been affected by my disease. I choke very easily and this choking has become progressively worse. Swallowing food, liquids and medication can all bring on choking fits and I suffer a choking fit at least daily. As a result of these choking episodes, I am compelled to avoid many foodstuffs that I would otherwise enjoy, but which have a tendency to precipitate such episodes. I have lost approximately 3 stone in weight.

Because of the loss of control in my upper limbs and hands, I am essentially unable to do even the slightest task for myself. I cannot even do simple things, such as scratching my nose when it is itchy.

I am very conscious of my appearance. I have lost a significant amount of weight. I feel as if I have no meat on my body and my physical appearance causes me great distress.

I become tired very easily. When I exert myself (as in the case of the dictation referred to elsewhere in this statement), I will be tired for a number of days afterwards. I am frequently fatigued and listless.

I was formerly a very keen gardener, but I cannot pursue this interest any longer. I would wish to spend as much time as possible tending to my garden, but I am no longer able to do so. We have a beautiful cottage garden of 1.5 acres that Tom and I designed and built up over 17 years and I am very sad at no longer being able to tend it. Similarly, I can no longer paint.

The only enjoyable interests that I can pursue are listening to the radio and creative writing, which is only possible through the medium of short periods of dictation to a typist. Even this latter activity I find exhausting and two hours’ dictation can leave me so tired that I have to spend a number of days in bed recuperating. I have completed the dictation of one book of 120,000 words.

I have been advised and believe that the EDSS (Expanded Disability Status Scale) is a scale used to describe the progress of multiple sclerosis. On this scale, 0 represents a normal examination, while 10 represents death from the disease. In September 2011, I am advised that I was assessed by Professor [name], my consultant neurologist, an 8.5 on this scale, namely essentially restricted to bed much of day with some effective use of arms and some self care functions. However, I believe now that I have deteriorated and now register, at best, 9.0 on the EDSS (Helpless bed patient, can communicate and eat). However, I believe that with my increasing difficulties in speaking and swallowing, I am beginning to demonstrate features of 9.5 on the said scale (Unable to communicate effectively or eat/swallow), in that while I can still communicate effectively, I am increasingly unable to swallow and have difficulty speaking. The next point on the EDSS scale after 9.5 is 10, namely death from multiple sclerosis.

I believe myself to have full mental capacity and have been assessed with a view to establishing my levels of competence for the purposes of these proceedings and for the purposes of taking the decisions to which these proceedings relate. I further say and believe and am advised that I have no underlying mental illness that does or is likely to affect my decision-making capacity. While the progress of my disease has affected my nervous system to the extent that I have lost control of my limbs and this loss of physical control will continue to worsen, I say and believe that it has not affected my cognitive functions. I have appended to this Witness Statement reports from Dr [name], Consultant Psychiatrist, and Dr [name], Clinical Neuropsychologist, which, marked with “MF4” and “MF5” respectively. I have identified these reports to [name], Practising Solicitor,as being the relevant reports, prior to him witnessing this Statement.

The expected course of my disease:

I am advised and believe that my disease is not amenable to any known treatment: it will continue to progress and I am conscious that I am deteriorating on a month-by-month basis. I have been advised by Professor [name], my treating neurologist, that my condition is now in a terminal phase and my ability to function will continue to deteriorate until my body, in effect, shuts down and I will die. My doctors cannot advise me with any precision on how long I have to live, but I say and believe and am advised that it may be a matter of months, rather than years.

My speech has deteriorated and I am concerned that in due course I will lose the capacity to communicate verbally. I am further concerned that I will also lose control over my head, further limiting my ability to communicate. I am concerned, too, about the gradual loss of my ability to swallow, which puts me at risk of aspiration and which will ultimately render me dependent on artificial feeding because I will be unable to swallow any form of nutrition. In the event that I were to become dependent on artificial nutrition I would not wish to accept it, with the inevitable consequence that I would starve to death.

When I drink water, it must be warmed up or contain a thickening agent, so that I do not choke on it.

I attend speech therapy in Arklow and undertake the exercises and treatments recommended to me but while these have been of assistance and may have slowed the progress of my condition, the progress has continued and, in relation to swallowing and speaking, is now very marked. I am particularly concerned in relation to the matters in issue in this case that I may lose the ability to make my wishes clear or to establish my own understanding and the quality of the judgments I am making for and about myself.

I now live with little or no dignity. I try to maintain some dignity by using nice soaps and perfumes when I shower or rather by having my carers use them in showering me. I try to joke about my condition and to minimise it by laughter and self-deprecation but such efforts can only thinly and briefly distract from the reality. I feel that my body parts do not stack up. I have lost what physical beauty I had. My body is like that of the walking dead.

My wishes for the ending of my life:

I did consider ending my own life approximately 5 years ago, by travelling to Switzerland to avail myself of the assisted suicide services offered by the organisation known as Dignitas. At that time, I reconsidered my decision on the basis of discussions with my partner, Tom, who tried hard to persuade me not to do so, and also on the basis of my own misgivings about the nature of what would have been involved in travelling to Switzerland. I had seen a documentary on Dignitas and realised that it was located in an industrial estate. I did not wish to die in an industrial estate, far from my own home and most of the people I have loved.

However, the price for my decision 5 years ago has been a marked deterioration in my condition and I would not readily defer such a decision again. I do not wish to live on at any cost. I am content that the right time to consider ending my life will be very soon. If I were able to do so, I would end my own life. However, because of the progress of my disease, I am now unable to do so. I am sorry that I did not commit suicide before I lost the use of my arms.

It is clear that, in earlier days, even mere decades ago, few if any people would have survived to experience the stage of multiple sclerosis that my condition has now reached or would have survived significantly longer if they did. I am grateful for the extra years I have had. But one of the consequences of modern medicine is that persons in my position can and do now survive, as I have now done, to the point where they can no longer do anything for themselves, even end their own lives without help, and must, in that condition, contemplate enduring months or years without even the ability to communicate and, without communication, must then endure either great pain and isolation with full consciousness or heavily sedated to the point of being barely conscious so as to avoid physical and psychological pain that cannot be expressed to or measured by others. These are horrifying prospects to me. I have been fortunate or unfortunate enough to retain, I believe, a full understanding of my position and a full emotional sense of how limited and undignified my present life and my prospects are. I fear that, if my disease follows what seems to be its inevitable bodily course and my mind continues to function, my loss of any beneficial sense of life will be accompanied by an increasingly desperate awareness of being both hopeless and trapped.

I say that I could live with my disease when it was in its earlier stages, however I do not wish to continue to live far beyond my current state of ill health. I do not wish to endure significant further deterioration and I cannot endure much more pain.

I am not afraid to die. I feel I have nothing further to achieve in my life. I have had and still have a loving family, including seven grandchildren. As mentioned, I have in many ways enjoyed the years modern medicine has saved for me from the ravages of my condition. But, for the reasons described above, I do not believe this enjoyment can continue much longer and I want very much to avoid a prolonged period of empty, desperate and undignified life, cut off from all the people, things and activities that have made my life worthwhile.

I am not a campaigner. This is the most important decision in my life, but I am making it for myself alone and am applying to the courts to establish, first, that I may end my life – and may lawfully have the assistance that will be necessary to that and, secondly, that any person who might assist me in ending my life (in accordance with my wishes and at a time of my own choosing) would not be prosecuted. My partner Tom has assured me repeatedly, since he first persuaded me not to commit suicide some five years ago, that if or when I come to the point where I want to die, he, notwithstanding his own fears and sadness, will do all he can to help me, including all he may do in helping to prepare the physical apparatus with which I can kill myself.

In 2010, I developed pneumonia and made clear to my treating doctors that I did not wish to be hospitalised. I was attended by my GP and a palliative care team at home and prescribed antibiotics which I took. I came close to dying but was not ready to do so and on two occasions my partner Tom resuscitated me.

Because of the progress of my disease, it is probable now, that even were I to reconsider my decision not to travel to Switzerland, I would be unable to end my life by the means offered by Dignitas. I say and believe and am advised that the method used by Dignitas involves swallowing liquid in a quantity greater than I am now (by reason of the progress of my illness) to swallow. In such circumstances, I am advised that I might not be able to swallow sufficient medication to end my own life, but would be at risk of swallowing sufficient only to induce sleep, or in the alternative, to induce a profound comatose state, with the concomitant possibility of brain damage.

I want to die in my own bed, in my house and in my home area. I want to die with dignity and in a peaceful and gentle way consistent with the way in which Tom and I have lived our lives. I do not wish to go to a nursing home. I do not wish to feel harried or threatened at the end of my life. Nor do I wish to live on whatever the cost to me in terms of further increasing dependence and indignity.

I believe that I have a right to autonomy and bodily integrity, which means I should be able to determine when my life ends and that I should not be prevented from doing so solely because my disability absolutely precludes me from ending my own life without assistance.

I believe that I am further constrained from ending my life by the worry, created the prohibition against the aiding and abetting of suicide, that any persons who assisted my in ending my life or who was present when I ended my life with the assistance of such a person could be prosecuted for helping me give expression to my wish to die.

I am advised that there are a number of methods which would reliably and predictably act in a quick and painless fashion to bring about the end of my life. I am also aware that, by reason of my impaired swallow, the administration of oral medication may not be an option for me.

I do not wish to end my life immediately. However, I know that there will come a point when I will wish to do so. That time may, for example, be when I can no longer tolerate the pain in which I find myself; when I am wholly dependent on others for basic feeding or hydration so that someone has to put a sponge to my lips to give me water; when I have completely lost bowel or bladder control or both; when (as is possible with my condition) I lose my eyesight. I would in these or similar circumstances, arising from my terminal illness, wish to end my life. However, because of my disability I am unable to end my own life without assistance and, given the inexorably progressive nature of my illness, I will never be able to do so. I will therefore require assistance to end my own life.

I wish to stop living when I choose and I will know when that time is and, at that time, I will request that my life be ended.

I know that my partner, Tom, is a person who would be willing to assist me in ending my own life at a time I decide, in order to reflect my wishes and to end my suffering.

I want to know that I will be able to end my own life and that any person who might aid or abet me in the exercise of my autonomous free will will not face criminal prosecution were that person to help me to end my life with my consent and in accordance with my express wishes. I want to know that I can die at a time of my choosing in Tom’s arms and with my family around me, without the fear that any person would be subjected to criminal prosecution.

This Witness Statement was made by Marie Fleming, who is known to me, [name of solicitor] on 27 November 2012 without the Witness affixing any mark or signature, she being physically unable to do so. The Statement was read to Marie Fleming and after she understood and assented to its contents and identified the reports referred to in the Statement, I have added my signature as witness.

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