I just watched a documentary, called "The Suicide Tourist." It's an very moving, powerful, documentary, chronicling the final days, and eventual suicide, Craig Ewert. The documentary takes place in Europe, and gives an extremely intimate view, of Craig's life, and death. It is a highly thought provoking piece, that raises many questions, about quality of life, and the right to die. Craig himself, is very articulate, and poses some strong arguments, for his decision, and his opinions, on living, suffering, and on dying. I think it offers an exceptional example of why people, OUGHT to have the right to "die with dignity" and demonstrates good arguments, for why euthanasia should be legal, here in the USA. On a whole, the documentary is very tastefully done, and an incredibly brave, and generous contribution to society, on the part of Craig, his wife, and his children. If I could, I would like to thank Craig, and his family, for their willingness to share his story. I have a high respect for his loved ones, in that they supported his difficult decision, and stood by his side (particularly his wife), while he carried out his wishes.
Craig and his wife, both American citizens, had moved to Europe, before he got sick. They had two grown children, and decided they wanted to travel, and live abroad. Craig, who had been a professor of computer science, got a teaching job in England, and he and his wife relocated. His wife started started studying for a Phd, in law, and they were enjoying living their new life together. Everything changed, when Craig started feeling weak, and ultimately was given the ALS (Lou Gehrig's disease) diagnosis, and told his best case scenario, was two to five years left, to live. Around six months, after being diagnosed with ALS , and his rapid deterioration in health, Craig decided he wanted to end his life.
He started doing research, and was disappointed to discover that physician assisted suicide, was only legal in three states (I know of Oregon & Washington). He became frustrated by the fact, that people expected him to just accept his fate, and feared more than anything, what life would be like, once he could no longer speak, or communicate. He feared becoming a prisoner, in his own body (which I feel I am- even though I can communicate- and know what it's like to be completely paralyzed, without speech, from my time spent hooked up to a ventilator) and doubted his life, or death would be as "peaceful" as third party accounts described. He brought up an excellent point, that just because a person is "still," to the casual observer, it doesn't mean that the person is at peace. Being trapped, with no way to communicate, and stuck with nothing but your thoughts, and hauntingly painful memories, is anything, but peaceful. I know from experience. It is hell, and pure torture.
Wanting to prevent further suffering, and speed up the process, of his inevitable death, Craig continued his search for a legal way to end his life, and discussed his viewpoint, feelings and fears, with his wife and children. Realizing that he was suffering, and death was fast approaching, his family respected his wishes, and supported him, in carrying them out. He ultimately found out about Dignitas, a clinic in Switzerland, which offers assisted suicide services, to Swiss citizens, and foreigners alike. Knowing he had to be able to swallow the lethal dose of sodium pentobarbital himself, and that his window of opportunity was closing (due to his degenerative disease, and the unpredictable nature of the illness), he set up his appointment, and was accepted, to receive their services.
During the filming of his four, final days, Craig talked about his reasoning behind wanting to commit suicide, and his opinions on it being illegal, throughout the UK, and much of the US. He very poignantly expressed the fact that, many people throw the issue of God, into the matter, as a leading factor, for why there isn't more support, for assisted suicide, and how it is ironically unfair, that "playing God" is seemingly only a matter of contention, when it involves ending a life (and suffering), versus saving it. He pointed out the glaringly obvious distinction, where doctors "play God," by saving newborn babies (through extreme medical intervention) and keep people alive, unnaturally long lifespans, through medicine, and machines, but that it's "ok" to "play God," when it preserves life. He pointed out the fact, that his respirator, had been "playing God," keeping him alive, and couldn't understand why it was only acceptable, to intervene in extending life, but unacceptable to end life, even when there is no hope of cure, and definite suffering present. I too, do not understand, the rationale, behind this unjust form of thinking.
The documentary discusses Swiss law, and says (which I've read in many articles) that because of the fact that euthanasia is illegal, in the UK, and most of the US, the Swiss government has seen a huge influx, in "suicide tourism," and that outside countries (namely the US & UK) have been pressuring Switzerland to reject foreign petitions, to die within their country. This scrutiny has made it difficult, for clinics like Dignitas, to accept any, but the most extreme, and most desperate of cases. Luckily for Craig, he met Dignitas' criteria.
I think it's a shame that people like Craig (and myself) are forced into living with incurable, extreme disabilities, essentially against our will. I can completely relate, to his suffering, his viewpoint on being forced into dependence, and his fears of feeling trapped, and hopeless. It is a shame, that anyone should have to fly half way around the world, and petition a foreign country, to die a dignified death. I think it is cruel, that our society (and the UK) would rather watch people suffer, who would otherwise be dead, if it were not for medical intervention, than to allow us, to choose what we can tolerate, and what we deem, is a life worth living. Why is it so wrong, to offer a peaceful death, to someone who has no means of living, on their own, to whom medical science can offer no cure, and who is, in his/her own opinion experiencing suffering? It makes me angry, that people like me and Craig have to leave the country, or slowly starve ourselves to death, or slowly die from infection, rather than be given a HUMANE, easy alternative, because other people (who have no clue what it's like to be in our shoes) think it's "right," or "wrong."
I know the pain, and loss, that Craig was faced with, and why he decided to end his life. I know, very well, the terror of being completely reliant on others, and the heaviness, of feeling like a burden. I too, know the sadness, and disappointment, of having to express feelings of wanting die, to the people I love, and the pain and guilt, that comes along with deciding I want to give up on life. I know the shame, blame, and guilt, that society at large, and religion, bears down on the individual. It is a horrible situation to be in.
I know what it's like to look into the eyes, of the people I love, and tell them that I feel my life is no longer worth living. I'm living through that pain, right now, and know how hard it is to let go, even though every fiber of my being is exhausted, and wanting to give in, my conscious keeps reminding me, of the pain my death will cause, and I wish I knew a way to avoid hurting the people I love, while at the same time ending my own suffering. I know how horribly frustrating it is, to be a prisoner, within your body. I'm trapped, exactly like Craig, and I understand his desire to escape.
I applaud Craig, for his courage, and his family, for their selflessness, and compassion. I don't think it's wrong, to want to die peacefully, when death is inevitable, and medicine offers no hope, of alleviating a person's pain, and all the future holds, is a life full of suffering. I wish I had a peaceful option; a means of escaping this life, that didn't involve added suffering, and putting my loved ones through a long, painful process, of watching me slowly die, day by day. I wish everyone could watch "The Suicide Tourist", and gain some perspective, on the fact that, sometimes the most humane, compassionate thing to do, is to offer a peaceful death, and to let go, versus sentencing someone (that would otherwise be dead anyway) to a lifetime of suffering.
Video- http://video.pbs.org/video/1430431984
Information about ALS-
http://www.alsa.org/about-als/what-is-als.html
- Posted using BlogPress from my iPad
Showing posts with label Dignitas. Show all posts
Showing posts with label Dignitas. Show all posts
Friday, May 6, 2011
Monday, July 26, 2010
Controversy in Dying
I was watching CNN the other day and a story about a controversial billboard caught my attention. The billboard over looks Rt. 22 in Hillside, NJ. I grew up in Hillside and traveled on that stretch of Rt. 22 nearly my whole life. Naturally, it peaked my interest to hear what was going on in my old neighborhood. It turns out that the billboard is currently advertising for a nationwide organization (one of it's chapters is based here in NJ), called the "Final Exit Network." The group is primarily volunteer based organization, which provides information, counseling services and advocates for the right for people to die with dignity. The billboard that they are sponsoring is visually very simple, no pictures, just text on a plain black background, six simple words. The simplicity of the design makes a direct, powerful impact on the reader and it is stirring up a ton of controversy. The sign reads, "My Life, My Death, My Choice" with the group's website (finalexitnetwork.org) printed below.
I've read several articles on the story and in all of interviews I've read, the founder of the NJ chapter, Rob Levine admits that The Final Exit billboard is meant to stir up dialogue about a patient's right to decide his/her care. So far, it's doing a good job. Critics say it promotes death and suicide and some groups want it taken down (the local Catholic community, for example). However, if you take a minute to actually visit the organization's website, it's clear that they are promoting choice and advocate for patient's rights. The group does not assist people with suicide. It is their mission to provide information and counseling to people with chronic, incurable diseases or ailments. While they are somewhat unique in that they are willing to counsel people that are not necessarily terminal, all the patients they help have survived a life changing injury, have a degenerative condition (such as ALS or MS) or painful incurable disease. The group does not advocate suicide. They educate people about their rights as a patient, long term planning (like funeral arrangements) and legal documents like advanced directives and living wills. The group also helps patients to fight for their rights and ensures that the patients wishes are carried out.
Critics can say what they like, but there are several key factors they have failed to consider (or ignore) . Number one, be informed before you state your views. If half the people that the reporters interviewed (by pulling commuters over to the side of the road) actually looked into the organizations position, they'd learn that they aren't assisting in suicides. The billboard isn't directed at your average "Emo" teenager or middle-aged person with relationship, self esteem, financial or run of the mill problems. The message is not telling people to go off themselves, because they are depressed. The billboard is meant to get people thinking about patient rights and inform people of the choices we all have, under the law. Secondly, it is very easy for a young, healthy individual to pass judgement on someone who is ill. If you are healthy, you've never experienced what it's like to have chronic pain, lose the ability to care for yourself, be constantly in and out of hospitals, reliant on machines and/or medication to survive. If you're healthy there's no way you can truly understand the stress, anxiety and desperation that can come along with knowing that there is no cure, that you might never get better, or worst, knowing that your condition will only degenerate over time. Unless a person is in this type of situation, he/she should hold their tongue. Lastly, critics should recall that church and state are separate. While many people's religious faith might influence them into thinking euthanasia or suicide is wrong, they should be mindful that their religious beliefs should only determine how they, themselves choose to live their life. It isn't right to impose personal, religious beliefs onto the law. Contrarily, I think people should be aware of the options they have and be conscious of the fact that life can change in an instance; so you're better off being prepared. It is tremendously helpful having the peace of mind, that God forbid you should get sick, or injured, that the people who hold your life in their hands will make decisions based on what YOU want for your life, as opposed to what THEY feel you should do with your life. At the end of the day, you are the only one that has to live in YOUR shoes. I think it's a good thing, to make people consider their choices.
Euthanasia is illegal here in the United States and often a hotly debated topic. I'm sure most adults are familiar with the name Jack Kevorkian, made famous (perhaps infamous, as "Dr. Death") by his stance and facilitation of assisted suicides, for terminally ill patients. He was convicted and spent time in prison for helping over a dozen people end their lives. It was a highly publicized case, here in the states, and even spawned a movie (which I've seen), called "You Don't Know Jack," which starred Al Pachino, John Goodman & Susan Sarandon. It was his story that first introduced me to the concept of euthanasia (I was a senior in high school when he was convicted in 1998 and had heard media coverage throughout the 1990's) and forced me to seriously think about the topic.
Although it is a touchy subject in the US, it is not so controversial worldwide. Many American and Brithish citizens have turned to other, more liberal socities to ease their suffering. Countries like Switzerland, allow medically assisted suicide and therefore get an influx of "suicide tourism" annually. In fact, there is a recent independent film (still listed as "currently in production" by Point Grey Pictures) called "The Suicide Tourist," which documents two cases of individuals that traveled to Switzerland to end their lives. The film is said to follow an American man during his last days and a Vancouver couple, petitioning to die together as a couple. I'm not sure if the wife won the right to join her husband in this particular case, because she was said to be healthy (which, for the record I oppose). However, I know of similar cases, where couples (both ill) have sought, and succeeded in dying together, through assisted suicide. Both cases from the film took place at Digitas clinic in Zurich, where for a fee of about €7,000 you can be injected with a lethal dose of sodium pentobarbitol and die, quickly and peacefully.
Currently, the Swiss government is working on revising their lax laws, regarding euthanasia. As the law stands, it is perfectly legal to die by or assisting in euthanasia, as long as you don't somehow profit from it. Dignitas, of course, is a business (whether they claim to be non-profit or not) and the founder has made millions from helping people end their lives. A recent scandal involving urns that were found at the bottom of a Lake Zurich have put Dignitas under the watch of the government, which is currently investigating the situation. Other countries have also been putting pressure (England especially) on Switzerland to create stricter guidelines that would call for each case to be evaluated by two doctors, and limiting the criteria for acceptance (most likely only for terminally ill patients- prognosis of death in six months or less). The possible reform would also make it much more difficult for foreigners to receive assistance; something Britain is hoping for.
I first heard of Dignitas a couple of years ago. I came across a post on Care Cure forums (spinal cord injury network and online community) about a young rugby player (only a few years younger than I was at the time) who had ended his life through the help of Dignitas. The man had been paralyzed (high level, complete injury) in an accident and after two years of struggling, he had had enough. Shortly after his death, the British government launched an investigation into his parents involvement in his death and were considering to charge them with murder. The charges were ultimately dropped.
I was surprised at the mixed bag of opinions that I read in the forum thread. I couldn't help but empathize with the man and thought very highly of his parents respecting his wishes, enough to be present at his death. Some people in the forums expressed sympathy, while others were downright irate, calling the man a coward. I guess I shouldn't have been shocked at the difference in opinions, it's just that, I felt if anyone could understand the man's pain and suffering, it would be those of us living with paralysis. I understand not wanting to die as a personal choice and that some people's beliefs deem suicide as "wrong" or "sinful." Technically speaking, I often wonder if "giving up" is the same as committing suicide (or assisted suicide). If you choose not to live on machines, medication, feeding tubes or treatments, is that the same as taking an injection of poison? I don't think so. I don't think everyone has the inner strength or motivation enough to find reason or the will to live with a high-level, irreversible spinal cord injury.
I don't like to judge others, because I feel I don't know what the whole picture is, and I don't have to live their lives. I also don't expect anyone to deal with my paralysis. It's my burden alone and the people in my life choose to be there. However, I could never expect anyone to live like this, because quality of life is an individual determination and I don't think it's fair to hold someone else to my personal standards, or ability to cope. There have been many, many days that I wished I could "opt out," so to speak. I don't think that makes me any better or weaker than anyone else, because no one has to live my life, except me. Only I can know the full extent of pain and emotional trauma I've experienced over all the loss and changes to my life. Only I can determine if it's worth my effort to keep moving forward. Today I choose to keep trying, but there might come a day where I just can't deal with it anymore and I wouldn't want people to judge me. I have to fight just to live. It takes a lot of work, money and services to sustain my life and it's not a life I'm happy with. It takes a tremendous amount of inner strength to find reasons and purpose to want to live this way. I would hope the people in my life would respect the fact that I have struggled to live a very difficult life (dependent on others, medication, bowel regimes, losing my career, freedoms & dreams) to the best of my abilities and that if I chose to "give up," it would mean I truly had no will left. I often wonder what critics would say if they could live my life for a week (and not know if they'd ever be cured). I have a feeling most critics would change their tune in a heartbeat.
I've always held the opinion that the individual should have power over his/her own health and well being; death and suffering included. I feel it's very cold and callous to force or expect someone to endure prolonged suffering, especially when medical science can offer no cure or remedy. As a society who loves animals and give our pets rights, we "put down" animals that are suffering, because it's "the humane thing to do." Why then (other than selfishness) are we so inhumane to chronically ill people? Personally, I respect others in the choices they make regarding their bodies and their health. Since my accident and upheaval of my own life, I've been forced to think about my own choices and what I want for myself. Most twenty something year olds don't think about their own deaths and/or take any initiative in creating a will, advanced directives or funerary plans. Luckily, most twenty something year olds are fortunate enough to never need those types of documents or advanced planning.
Looking back, I wish I had taken measures to create legal documents that stated my wishes, in the event of a catastrophic event. Reality is, anything can happen, despite your age. Young people are normally complacent (or ignorant) about documenting their wishes and estate planning, because they feel they have plenty of time and can wait until they are old and grey to start worrying. The truth of the matter is, that you are always at risk of illness and/or injury and once you are legal adult, it becomes very difficult (legally speaking) for other people to settle your affairs or make decisions for you. In the event you can't communicate your wishes, people you may not want making decisions for you can step in and/or make decisions you wouldn't want. It's much better to be prepared, especially if you're out of the house and on your own, because there are many aspects of your life can that become effected by illness or injury. Expressing your thoughts aloud is not enough. It's worth the time and effort (as little as 20 minutes and less then $100- using templates like Legalzoom.com) to put your wishes in writing.
At the time of my accident I was twenty four years old. I was teaching full-time and living in my own apartment. Immediately after my injury I was rushed to the hospital, on the brink of death. I spent three weeks in intensive care, had three surgeries, multiple live threatening fevers and was on and off a ventilator. My family stepped in to make many decisions for me. It was an extremely stressful time for the whole family and created a lot of tension and bad blood between some people. My privacy was completely destroyed, in every sense of the word. My apartment was shut down immediately; all of my belongings rummaged through. My parents tried to handle all my bills & finances and eventually, I had to give them power of attorney. I had no spouse and since I was an adult my parents were legally bound as to what they could and couldn't access. Everything happened so fast and I was in shock for a very long time. At first, I was in denial about the severity of my injuries. As reality started to sink in, it was all so traumatic that I was not in a frame of mind to be handling any responsibilities, other than just fighting to stay alive. Looking back however, I wish many things had been handled differently, and that I could've played a bigger role.
Since then, I've regained all my power to oversee my own affairs and have put plans into place, so that if I should become very I'll, or die, there will be no guessing, no fighting and less stress for everyone. I have a will and advanced directives. The will outlines what I would like to be done with my material assets. I don't have much, but it is very important to me that the people I choose get what I would like them to have. I felt extremely powerless after my accident. I never want to go through that again, nor do I want tension among my loved ones (recall the Terri Schiavo case 2001-2005) or to put my family through the burden of having to make life altering (or ending) decisions.
I know what it is like to be dependent on machines to breath. I never want to experience that again. I've decided (and documented in my advanced directives) that in the event I can no longer breath on my own that I am not to be placed on machines. That means that I would most likely die, but I'm ok with that. Quality of life is more important to me than quantity of life. I see no reason to prolong my own suffering. I find no quality of life in living off of machines (personally speaking). Everyone's threshold for what they can tolerate and what they consider quality of life is different. That's why it's so important to seriously think about what you want for yourself and to document it. In all honesty, if I had a living will at the time of my injury I would not be alive today. I would not of wanted this life for myself. I still do not want this life for myself, but I am stuck with it, and feel I need to make the best of it. I'm already unhappy, but that doesn't mean I'm trying to die, or giving up. I just refuse to suffer through anything worst than my already bad situation. I don't see the sense in living on machines. Been there. Done that. No thank you.
Now that I have my wishes documented, it's extremely important that they're followed through. I have made it clear to my family and care givers that these documents exist. I have a special card with my identification to alert strangers as well. If hospitals don't know, they're going to try to do everything possible to keep you alive. It's important that they know what you want and that plans are already in place. In my advanced directive I've also spelled out what I'd like done with my remains. I'm donating my organs, would like to be cremated, do not want a viewing or funeral and expressly forbid anyone to keep my ashes. It gives me peace of mind to know my wishes will be carried out. Death is not a pleasant topic and sometimes hard to talk about, but it's an inevitable part of life. Every individual has the right to make certain choices about their care, in both life and death. Otherwise, you leave a very heavy burden on your loved ones, who most likely, would not want the enormous responsibility, if they had a choice. It's important that people know their rights and if exercised, that they are respected. I think more people should have an open dialogue with their loved ones and take the time to make their own decisions.
LINKS to related articles (if case you're interested in learning more about some of the things I mentioned):
Canadian couple-http://www.timesonline.co.uk/tol/news/world/europe/article6021947.ece
British couple-http://www.dailymail.co.uk/news/article-1199550/Famous-British-conductor-Sir-Edward-Downes-wife-die-assisted-suicide-clinic-Dignitas-Switzerland.html
Rugby player-http://www.telegraph.co.uk/news/majornews/3689907/Parents-of-rugby-player-in-Dignitas-assisted-suicide-will-not-face-charges.html
Billboard-http://wcbstv.com/local/right.to.die.2.1805186.html
BBC Dignitas coverage- http://www.bbc.co.uk/news/10461894
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- Posted using BlogPress from my iPhone
I've read several articles on the story and in all of interviews I've read, the founder of the NJ chapter, Rob Levine admits that The Final Exit billboard is meant to stir up dialogue about a patient's right to decide his/her care. So far, it's doing a good job. Critics say it promotes death and suicide and some groups want it taken down (the local Catholic community, for example). However, if you take a minute to actually visit the organization's website, it's clear that they are promoting choice and advocate for patient's rights. The group does not assist people with suicide. It is their mission to provide information and counseling to people with chronic, incurable diseases or ailments. While they are somewhat unique in that they are willing to counsel people that are not necessarily terminal, all the patients they help have survived a life changing injury, have a degenerative condition (such as ALS or MS) or painful incurable disease. The group does not advocate suicide. They educate people about their rights as a patient, long term planning (like funeral arrangements) and legal documents like advanced directives and living wills. The group also helps patients to fight for their rights and ensures that the patients wishes are carried out.
Critics can say what they like, but there are several key factors they have failed to consider (or ignore) . Number one, be informed before you state your views. If half the people that the reporters interviewed (by pulling commuters over to the side of the road) actually looked into the organizations position, they'd learn that they aren't assisting in suicides. The billboard isn't directed at your average "Emo" teenager or middle-aged person with relationship, self esteem, financial or run of the mill problems. The message is not telling people to go off themselves, because they are depressed. The billboard is meant to get people thinking about patient rights and inform people of the choices we all have, under the law. Secondly, it is very easy for a young, healthy individual to pass judgement on someone who is ill. If you are healthy, you've never experienced what it's like to have chronic pain, lose the ability to care for yourself, be constantly in and out of hospitals, reliant on machines and/or medication to survive. If you're healthy there's no way you can truly understand the stress, anxiety and desperation that can come along with knowing that there is no cure, that you might never get better, or worst, knowing that your condition will only degenerate over time. Unless a person is in this type of situation, he/she should hold their tongue. Lastly, critics should recall that church and state are separate. While many people's religious faith might influence them into thinking euthanasia or suicide is wrong, they should be mindful that their religious beliefs should only determine how they, themselves choose to live their life. It isn't right to impose personal, religious beliefs onto the law. Contrarily, I think people should be aware of the options they have and be conscious of the fact that life can change in an instance; so you're better off being prepared. It is tremendously helpful having the peace of mind, that God forbid you should get sick, or injured, that the people who hold your life in their hands will make decisions based on what YOU want for your life, as opposed to what THEY feel you should do with your life. At the end of the day, you are the only one that has to live in YOUR shoes. I think it's a good thing, to make people consider their choices.
Euthanasia is illegal here in the United States and often a hotly debated topic. I'm sure most adults are familiar with the name Jack Kevorkian, made famous (perhaps infamous, as "Dr. Death") by his stance and facilitation of assisted suicides, for terminally ill patients. He was convicted and spent time in prison for helping over a dozen people end their lives. It was a highly publicized case, here in the states, and even spawned a movie (which I've seen), called "You Don't Know Jack," which starred Al Pachino, John Goodman & Susan Sarandon. It was his story that first introduced me to the concept of euthanasia (I was a senior in high school when he was convicted in 1998 and had heard media coverage throughout the 1990's) and forced me to seriously think about the topic.
Although it is a touchy subject in the US, it is not so controversial worldwide. Many American and Brithish citizens have turned to other, more liberal socities to ease their suffering. Countries like Switzerland, allow medically assisted suicide and therefore get an influx of "suicide tourism" annually. In fact, there is a recent independent film (still listed as "currently in production" by Point Grey Pictures) called "The Suicide Tourist," which documents two cases of individuals that traveled to Switzerland to end their lives. The film is said to follow an American man during his last days and a Vancouver couple, petitioning to die together as a couple. I'm not sure if the wife won the right to join her husband in this particular case, because she was said to be healthy (which, for the record I oppose). However, I know of similar cases, where couples (both ill) have sought, and succeeded in dying together, through assisted suicide. Both cases from the film took place at Digitas clinic in Zurich, where for a fee of about €7,000 you can be injected with a lethal dose of sodium pentobarbitol and die, quickly and peacefully.
Currently, the Swiss government is working on revising their lax laws, regarding euthanasia. As the law stands, it is perfectly legal to die by or assisting in euthanasia, as long as you don't somehow profit from it. Dignitas, of course, is a business (whether they claim to be non-profit or not) and the founder has made millions from helping people end their lives. A recent scandal involving urns that were found at the bottom of a Lake Zurich have put Dignitas under the watch of the government, which is currently investigating the situation. Other countries have also been putting pressure (England especially) on Switzerland to create stricter guidelines that would call for each case to be evaluated by two doctors, and limiting the criteria for acceptance (most likely only for terminally ill patients- prognosis of death in six months or less). The possible reform would also make it much more difficult for foreigners to receive assistance; something Britain is hoping for.
I first heard of Dignitas a couple of years ago. I came across a post on Care Cure forums (spinal cord injury network and online community) about a young rugby player (only a few years younger than I was at the time) who had ended his life through the help of Dignitas. The man had been paralyzed (high level, complete injury) in an accident and after two years of struggling, he had had enough. Shortly after his death, the British government launched an investigation into his parents involvement in his death and were considering to charge them with murder. The charges were ultimately dropped.
I was surprised at the mixed bag of opinions that I read in the forum thread. I couldn't help but empathize with the man and thought very highly of his parents respecting his wishes, enough to be present at his death. Some people in the forums expressed sympathy, while others were downright irate, calling the man a coward. I guess I shouldn't have been shocked at the difference in opinions, it's just that, I felt if anyone could understand the man's pain and suffering, it would be those of us living with paralysis. I understand not wanting to die as a personal choice and that some people's beliefs deem suicide as "wrong" or "sinful." Technically speaking, I often wonder if "giving up" is the same as committing suicide (or assisted suicide). If you choose not to live on machines, medication, feeding tubes or treatments, is that the same as taking an injection of poison? I don't think so. I don't think everyone has the inner strength or motivation enough to find reason or the will to live with a high-level, irreversible spinal cord injury.
I don't like to judge others, because I feel I don't know what the whole picture is, and I don't have to live their lives. I also don't expect anyone to deal with my paralysis. It's my burden alone and the people in my life choose to be there. However, I could never expect anyone to live like this, because quality of life is an individual determination and I don't think it's fair to hold someone else to my personal standards, or ability to cope. There have been many, many days that I wished I could "opt out," so to speak. I don't think that makes me any better or weaker than anyone else, because no one has to live my life, except me. Only I can know the full extent of pain and emotional trauma I've experienced over all the loss and changes to my life. Only I can determine if it's worth my effort to keep moving forward. Today I choose to keep trying, but there might come a day where I just can't deal with it anymore and I wouldn't want people to judge me. I have to fight just to live. It takes a lot of work, money and services to sustain my life and it's not a life I'm happy with. It takes a tremendous amount of inner strength to find reasons and purpose to want to live this way. I would hope the people in my life would respect the fact that I have struggled to live a very difficult life (dependent on others, medication, bowel regimes, losing my career, freedoms & dreams) to the best of my abilities and that if I chose to "give up," it would mean I truly had no will left. I often wonder what critics would say if they could live my life for a week (and not know if they'd ever be cured). I have a feeling most critics would change their tune in a heartbeat.
I've always held the opinion that the individual should have power over his/her own health and well being; death and suffering included. I feel it's very cold and callous to force or expect someone to endure prolonged suffering, especially when medical science can offer no cure or remedy. As a society who loves animals and give our pets rights, we "put down" animals that are suffering, because it's "the humane thing to do." Why then (other than selfishness) are we so inhumane to chronically ill people? Personally, I respect others in the choices they make regarding their bodies and their health. Since my accident and upheaval of my own life, I've been forced to think about my own choices and what I want for myself. Most twenty something year olds don't think about their own deaths and/or take any initiative in creating a will, advanced directives or funerary plans. Luckily, most twenty something year olds are fortunate enough to never need those types of documents or advanced planning.
Looking back, I wish I had taken measures to create legal documents that stated my wishes, in the event of a catastrophic event. Reality is, anything can happen, despite your age. Young people are normally complacent (or ignorant) about documenting their wishes and estate planning, because they feel they have plenty of time and can wait until they are old and grey to start worrying. The truth of the matter is, that you are always at risk of illness and/or injury and once you are legal adult, it becomes very difficult (legally speaking) for other people to settle your affairs or make decisions for you. In the event you can't communicate your wishes, people you may not want making decisions for you can step in and/or make decisions you wouldn't want. It's much better to be prepared, especially if you're out of the house and on your own, because there are many aspects of your life can that become effected by illness or injury. Expressing your thoughts aloud is not enough. It's worth the time and effort (as little as 20 minutes and less then $100- using templates like Legalzoom.com) to put your wishes in writing.
At the time of my accident I was twenty four years old. I was teaching full-time and living in my own apartment. Immediately after my injury I was rushed to the hospital, on the brink of death. I spent three weeks in intensive care, had three surgeries, multiple live threatening fevers and was on and off a ventilator. My family stepped in to make many decisions for me. It was an extremely stressful time for the whole family and created a lot of tension and bad blood between some people. My privacy was completely destroyed, in every sense of the word. My apartment was shut down immediately; all of my belongings rummaged through. My parents tried to handle all my bills & finances and eventually, I had to give them power of attorney. I had no spouse and since I was an adult my parents were legally bound as to what they could and couldn't access. Everything happened so fast and I was in shock for a very long time. At first, I was in denial about the severity of my injuries. As reality started to sink in, it was all so traumatic that I was not in a frame of mind to be handling any responsibilities, other than just fighting to stay alive. Looking back however, I wish many things had been handled differently, and that I could've played a bigger role.
Since then, I've regained all my power to oversee my own affairs and have put plans into place, so that if I should become very I'll, or die, there will be no guessing, no fighting and less stress for everyone. I have a will and advanced directives. The will outlines what I would like to be done with my material assets. I don't have much, but it is very important to me that the people I choose get what I would like them to have. I felt extremely powerless after my accident. I never want to go through that again, nor do I want tension among my loved ones (recall the Terri Schiavo case 2001-2005) or to put my family through the burden of having to make life altering (or ending) decisions.
I know what it is like to be dependent on machines to breath. I never want to experience that again. I've decided (and documented in my advanced directives) that in the event I can no longer breath on my own that I am not to be placed on machines. That means that I would most likely die, but I'm ok with that. Quality of life is more important to me than quantity of life. I see no reason to prolong my own suffering. I find no quality of life in living off of machines (personally speaking). Everyone's threshold for what they can tolerate and what they consider quality of life is different. That's why it's so important to seriously think about what you want for yourself and to document it. In all honesty, if I had a living will at the time of my injury I would not be alive today. I would not of wanted this life for myself. I still do not want this life for myself, but I am stuck with it, and feel I need to make the best of it. I'm already unhappy, but that doesn't mean I'm trying to die, or giving up. I just refuse to suffer through anything worst than my already bad situation. I don't see the sense in living on machines. Been there. Done that. No thank you.
Now that I have my wishes documented, it's extremely important that they're followed through. I have made it clear to my family and care givers that these documents exist. I have a special card with my identification to alert strangers as well. If hospitals don't know, they're going to try to do everything possible to keep you alive. It's important that they know what you want and that plans are already in place. In my advanced directive I've also spelled out what I'd like done with my remains. I'm donating my organs, would like to be cremated, do not want a viewing or funeral and expressly forbid anyone to keep my ashes. It gives me peace of mind to know my wishes will be carried out. Death is not a pleasant topic and sometimes hard to talk about, but it's an inevitable part of life. Every individual has the right to make certain choices about their care, in both life and death. Otherwise, you leave a very heavy burden on your loved ones, who most likely, would not want the enormous responsibility, if they had a choice. It's important that people know their rights and if exercised, that they are respected. I think more people should have an open dialogue with their loved ones and take the time to make their own decisions.
LINKS to related articles (if case you're interested in learning more about some of the things I mentioned):
Canadian couple-http://www.timesonline.co.uk/tol/news/world/europe/article6021947.ece
British couple-http://www.dailymail.co.uk/news/article-1199550/Famous-British-conductor-Sir-Edward-Downes-wife-die-assisted-suicide-clinic-Dignitas-Switzerland.html
Rugby player-http://www.telegraph.co.uk/news/majornews/3689907/Parents-of-rugby-player-in-Dignitas-assisted-suicide-will-not-face-charges.html
Billboard-http://wcbstv.com/local/right.to.die.2.1805186.html
BBC Dignitas coverage- http://www.bbc.co.uk/news/10461894
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