Sunday, November 22, 2015

Why I Need to Leave the United States to Die

In the United States, legislation to allow death with dignity or aid in dying is passing one state at a time. These laws generally allow doctors to help someone die if that person has a terminal illness and six months or less to live. While I applaud that effort and know that it represents great advancement, I can’t accept that the only situation in which I can choose assisted dying is if I have a terminal disease. What if I have dementia or some chronic pain related to my neck injury? In some other countries, I would be allowed to choose assisted suicide or aid in dying if I have a terminal illness, unendurable pain, or a disability.

Even if I concede that the only time I should get to choose assisted dying is when I have a terminal disease, there would still be obstacles. Certainly medical doctors have information about diseases and what happens when conditions worsen and perhaps have an indication of how long a person might live, but the truth is they could be wrong. No one knows for sure what will happen in the future. Forcing me to wait, say, six months, when a doctor predicts I would be near death, could mean I would be unable to act on my decision when the time came. There is no guarantee after that six-month period that I would be able to take medicine or swallow or be cognizant enough to state my wishes clearly. So why should I have to wait for a doctor-defined deadline even if I have a terminal illness? Why not allow me to make that choice when I know it is the right time for me to die?

In all cases possible, I should be the person making a decision about my living and my dying where I am not hurting someone else. If I am unconscious or become unable to communicate, I will have made sure beforehand that I’ve provided enough information about what I want so that everyone involved is able to act in accordance with my wishes.

Asking someone to help someone else die by suicide is a very big thing to ask. I would even suggest that it is too much to ask, except for the fact that there are so many dangerous ways people can attempt suicide that could cause injury, and the safest method I am aware of is administering certain medication available only to physicians. To my knowledge, no one else has legal access to this medication. So given that the safest and most comfortable way to obtain aid in dying is to do it with the guidance of a physician, I don’t see any other option than to ask for a doctor’s assistance.

I have read of a physician suggesting that anyone can cause their own death by not eating or drinking liquids. I admit that if we could easily and effortlessly make this choice on our own, we would, and that would be preferable. But I don’t think many people have the stamina to go this route.

At the same time, suicide is not something that should be taken lightly, whether we are acting on our own or asking for assistance. So it is perfectly reasonable to try to create some criteria to ensure certainty and that no vulnerable person is coerced into taking their own life.

The thing that makes aid in dying work is if it is my decision and not someone else’s decision. So to the extent the stipulations are so stringent that you are taking away my choice, denying me the choice of aid in dying is just as bad as forcing me to choose it. Further, what reinforces that it is freely chosen is having the person actually take the medicine on their own. You can’t guarantee that I will have the capacity to do that or be able to state my wishes in the future, so why deny me the choice to do it when I am able to state my decision with 100 percent certainty, use my hands, and swallow?

This is what we should be afraid of: insurance companies denying treatment to someone for a disease and offering coverage for assisted dying instead. We should be afraid if someone else makes the decision and not the actual person being aided in dying. But if the decision is coming from an internal soul searching and certainty, I believe it should be respected in all cases.

I’m sensitive to the argument that people deemed not worthy in our society would be pressured to choose aid in dying or that someone might be forced to choose assisted suicide not because they want to die but because of the financial hardship caused by choosing to treat a disease. I also acknowledge the potential for people to choose assisted suicide only out of a fear of being a burden to others or because of a temporary circumstance such as untreated depression.

So I think it is important to address these concerns, but the solution is not to prevent someone who is absolutely certain of their decision from exercising their right to die. Instead, I would advocate several social and economic reforms.

Since insurance involvement with our health care system can deny payment and interfere with the doctor-patient relationship in many instances—not just in end-of-life decisions—I call for an end to this system and the creation of a single-payer health care system in its place.

And let’s do all the hard work of creating a world where painful social interactions such as bullying, child abuse, sexual assaults, domestic violence and all other unnecessary cruelty and suffering do not happen. Let’s offer supports to minimize the impact of financial considerations on choosing assisted suicide: affordable education options, housing and employment opportunities. Let’s provide treatment for chemical dependency, depression and other emotional traumas and losses that can make it difficult to want to go on with living.

But the truth is we will all die someday, and we should all have the nonnegotiable personal autonomy to decide when and how. Just because someone’s situation does not fit an established criterion like a life-threatening disease or six months left to live is not reason enough to take away their ability to choose aid in dying. I would prefer to die after a painful six months with a terminal illness than live ten years with dementia. It is not anyone else’s right to decide that it should be the reverse.

My choice may be different from someone else’s, but I would never advocate for us all to be the same in any area of our lives, including when it comes to choosing how to die. It is important that each of us makes our own decisions about health care at the end of life and about any prolonging of our lives. For us all to have true autonomy to make those choices, we as a society must address poverty and economic inequality, and we must solve the problem of for-profit health insurance and health care systems.

We don’t know someone else’s pain, suffering or circumstances. Making a decision about the end of life for someone else, or setting the bar so high that one cannot choose assisted dying in the case of dementia, depression or some other health condition, is not acceptable. We should only ascertain certainty. That is all.

One of the obstacles to creating true autonomy around end-of-life decisions is the burden of stigma attached to suicide. It makes it that much harder for people to talk about it—both people who want to consider it and the loved ones they would leave behind. But not all suicides or suicide attempts are the same. This is very similar to how we can’t treat all assisted dying cases as exactly the same. There are variations in diseases and in circumstances and pain. The quality of life for one person is measured differently from that of another. Ultimately what we should be measuring for is certainty in making this choice and nothing else.

We should do what we can to prevent suicide when that is not the ultimate intent of the person taking those actions, but we need to allow for assisted dying and suicide in all circumstances where we can ascertain certainty.

If we believe someone wants to live even as they are stating their certainty about wanting to die, we should do what we can to offer help as we continue to assess the situation. We get to have autonomy in our choices, but we shouldn’t take away a helping professional’s discernment in that process. That is what being a helper in any situation is about. It is not just a one-way street. If it was, we might as well be seeking this medical help (or any help) from a machine. No doctor should ever be required to assist if they’re not comfortable with that responsibility, and no doctor should be required to help in any one particular situation if not comfortable with the circumstances surrounding that particular person and situation. If we believe someone is asking for help to stay alive even if indirectly by way of a suicide attempt, we should offer it whether as a professional, friend or acquaintance.

Conversely, we need to respect someone else’s decision even if it does not line up with a choice that we would make ourselves or fit our idea of when it would be acceptable to choose or ask for assisted dying. While no one should be required to assist someone with dying, I challenge people to ask why I can choose assisted dying in the case of a terminal illness and not dementia, for example. To go even further, I may have limits to what I want to experience emotionally, physically or in age-related conditions that are very different from someone else’s preferences. Just because it falls out of the norm of what is typical in our society does not mean it is not the right decision for me or another person to make.

So let’s continue to work toward a more compassionate society, where everyone has a good quality of life, but let’s be very clear that the choice to obtain assisted dying or decline medical attention and all other choices about our living or dying need to come from within. While we want some safeguards and standards, let’s not be paternalistic and controlling of what someone else can do if they are not hurting someone else. One of the best ways to squelch the conversation and continue to stigmatize suicide is to say it is unacceptable to consider suicide in certain cases but acceptable in other cases, or that it is not acceptable under any circumstance. We really don’t know what is the right decision for another person to make about anything in their lives, including death.

People continue to worry about the “slippery slope” in relation to many controversial topics such as sexuality and certainly in death and dying. I can’t count the number of times I’ve seen “slippery slope” used in reference to assisted suicide. There is no slippery slope if you agree that we each should be making the decision for ourselves. There only is a slippery slope if you believe that outside control is being lost in the process. The truth is we can’t control people in any instance. Ultimately we cannot control someone else’s thoughts and values or even what actions they take.

And why would we want to, if they are not hurting someone else? We should all have personal autonomy when it comes to decisions that directly affect us.

Each of us are unique in every area of our lives. If that were not true, this would be a very boring world to live in. We should all be free to make decisions in all areas of our health. We should not automatically just do what someone else does or what someone else wants us to do or what a doctor suggests. We ought to do what is right for us given all the options and assessing our unique circumstance. Assisted dying is just one of those many options we have when assessing our health, when we acknowledge that death will happen to all of us—the question is when and how.

Life is a mystery. Trusting people to make their own decisions when it comes to death and dying, or anything else for that matter, is not always easy.

While coming to an understanding of what is certainty and measuring this certainty is important, it is not and will never be an exact science. I believe we lose the true value of living when we start acting like machines, when we think we can know and understand everything at the cost of our sense of embodiment, embracing our emotions and dwelling in the mystery of living and dying. This very real tangible loss of our humanness in how we do health care and many other things in our society is the reason I am questioning how we face death and dying in the United States. Living life will never be without its mysteries, and why would we ever want it to be? Who really knows what will happen in the future? Taking the risk to make decisions not knowing the future is what living life is about almost on a daily basis.

So even if it looks like a suicide is a loss, we cannot really know that that is true for that particular person who chose to end their life. In fact, I believe it can be a courageous decision to affirm our uniqueness and what we truly want in every area of our life. The feeling of disempowerment when we have no choice but to continue to live life no matter what is much worse than feeling empowered to have a choice and then taking the responsibility to make that choice.

The question is not, Will suicide happen even if we try to make it difficult? The question is, Will we continue to stigmatize it and therefore not have the opportunity to talk about these things in advance? Instead, we should start to engage in the conversation so that we can ultimately discern the differences between the times people are having difficulty and truly wanting help to stay alive and the times it is an empowered choice to choose to die.

We can decide on some criteria for determining an individual’s certainty, such as requiring two doctors to give permission for assistance in dying. But ultimately we have to accept that living life is a mystery and trust people to make their own decisions when it comes to death and dying as well as any other area of their lives.

Choosing assisted dying or choosing to do anything that cannot be undone in our living or dying is a personal decision that no one else ought to be making for us. Only we know the answer that is right for us about anything important in our lives.

Those who seek certainty in everything in life are likely to experience a lifelessness while still alive that is much worse than any assisted dying or suicide could ever be.

In addition to preventing unnecessary suffering in the world and suicide attempts by people who do not really wish to die, it is also important to build a world where we all take personal responsibility for our choices and have the confidence and awareness to be able to make the difficult choices in our lives, whether it is choices in our living or choices in our dying.

I believe we should take the stigma away from suicide so that it can be consciously chosen and so that it does not have to be a secret, which is probably one of the more painful aspects about it for everyone involved.

There is some possibility that the people who are successful in suicide are very certain, in comparison to individuals who make an attempt but are not really wishing to die and somehow survive. However, those individuals who have succeeded in suicide are not here to confirm that theory. Moreover, the fact that it can be so difficult to talk about suicide makes it hard to know after the fact whether that really was their sincerest, conscious choice made without any reservations. No wonder, then, that we are often surprised when someone dies by suicide. It just makes the pain all that much worse for people left behind when we can’t be more open that choosing to die may be the right choice for some of us at some point in time.

Whether we call it assisted dying or assisted suicide, and no matter at what age or what conditions or illnesses are surrounding the decision, as long as it remains stigmatized, the pain for those left behind will be even more heightened than it needs to be.

Loss is painful and relationships are complex whether we are living or dying, whether a death is by suicide or has some other cause. Someone choosing something we would not want them to choose can be painful, whether it is something that happens in life or in death. And I don’t think that will ever change. This concept is not limited to suicide or assisted dying. Learning how to respond to pain in our lives and the world is just as important as letting in the joy and love that exist. If we don’t acknowledge pain and joy as equal aspects of life, I believe we experience a kind of death in our life that is far worse than any meaningful and conscious choice to die.

In another essay I have questioned what exactly is a suicide. There are many actions that may contribute to our living and dying. Just because it is an action that may takes years to kill us does not mean it is not suicidal. Eating poor nutrition and working a stressful job are just two examples of routine actions that can lead to our death, as is declining medical intervention. So choosing assisted dying or suicide is just one more way to use our personal autonomy to consciously decide when the time is right for us to die. To stigmatize it or not allow it in some instances means people will only search for more creative ways to act on their wishes and not talk to others about it in advance.

Life is short. Death may come sooner than we expect. Making conscious choices in every moment of our living and dying is the key to leading a meaningful life.

Copyright 2015 by Susan Miranda.  All rights reserved.  No part of this writing may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright holder. For reprint permission, email