The Right To Die And Why We Struggle With Itby Dr Emma Gray - 3rd November, 2016
The Right to Die And Why We Struggle With It
Giving ourselves and others the (legal) right to die is a decision that many of us wrestle with. It provokes a range of strong and often overwhelming emotions which makes thoughtful consideration of the topic at times practically impossible. Understanding why a decision is challenging can make it less so. There are a number of key factors that contribute to the difficulties we experience when we consider whether individuals should be able to choose when they die.
Our experiences from childhood through to the present day shape the way that we understand the world, they influence the choices that we make, how we feel about things and how we behave. This means that our decisions are influenced not just by what is immediately obvious but by everything that has ever happened to us. Furthermore, the more personally important a decision the more tangled up with our past it will be. Decisions and choices about death will therefore be linked to every loss, fear and uncertainty that we have ever experienced making the issue an extremely complex one, in other words, choices about death will never just be about death but about the whole life that has preceded it.
A reasonably straight forward example of the influence of our earlier experiences on current decisions is the common concern that giving people the right to die will be open to abuse by carers or family members who would maybe benefit from a person’s death. This is of course something that professionals involved in the process need to be aware of, but it can be a concern that shuts down thoughtful consideration before it has even begun. Such fears will be informed by our previous experience of others, for example, if we have been mistreated, misrepresented or abused (particularly as children when our strongest beliefs are formed) we will expect this behaviour to be repeated often regardless of the actual facts of the situation. Such expectations make consideration of the right to die more complex for these individuals than for those who have had a different early experience.
Religion dominates the question of the right to die in the media and is a powerful influence on many people’s lives. However, religion is a complex and controversial topic with people differing dramatically in their beliefs about not only the specifics of faith but also the function that it serves for its followers. When we view the right to die through the lens of religion two of the most complex issues humanity faces are fused together. Not unsurprisingly when the right to die is considered from a religious perspective resolution on the topic can feel further away than ever.
The awareness of our mortality is an ongoing challenge and one we usually tackle through avoidance. We have become very adept as pushing the reality of our (and our loved ones) impending death to the outskirts of our consciousness, we fill our lives with distractions only giving death consideration when we have no other choice. Allowing ourselves the right to decide when they die or even just giving it thoughtful consideration results in a head on confrontation with the subject matter. This can be intolerably distressing and a common response to such discomfort is an (subconscious) avoidance of thoughtful consideration of the issue in favour of pushing it back to the fringes of our awareness.
We have evolved to survive, everything we do can be tied to this purpose including our natural fear and attempted avoidance of death. Considering a right to die as a basic human right may therefore sometimes feel like a fundamental contradiction of our basic programming. Instead, nature is a blunt tool and has yet to provide us with a natural capacity to deal with such psychologically complex and challenging questions.
There seems to be no easy, pain-free and universal resolution to the issue of whether to give individuals the right to decide when they die. However, understanding why the topic presents us with so many challenges can allow us to step back from ourselves and create a space for thoughtful consideration of the issue, we all surely have to right to that.
The Process of Grief
When we experience a loss, we go through a particular process designed by nature to help us reconfigure our lives in light of the new reality, one without a person that we loved. As with all products of evolution, grief allows us to survive, in this case, the emotional devastation of losing someone pivotal in our lives. Giving someone the right to decide when they die has a significant impact upon the grieving process, one that it is important to understand if we are to navigate it successfully.
The process of grief as it is currently understood is as follows:
Stage 1 – Denial
Denial is our first response to a loss. It serves a protective function, allowing us to supress the reality of what is happening, until we are ready to deal with it.
Stage 2 – Anger
As denial dissipates we can feel intense anger. It is thought that this serves as a cover for the anxiety we feel faced with our new reality, a life without our loved one. Anger is often a more tolerable emotion because it’s energy can be directed outside of us and onto other people or things.
Stage 3 – Bargaining
Bargaining is a natural response to the hopelessness and fear we feel in the face of a loss. It can create an illusion of control over what has happened, for example “If only I had done such and such, my loved one would still be here”. A variation on this is to make a deal with God or our higher power to delay the inevitable.
Stage 4 – Depression
The depression that we feel when grieving serves an incredibly important function, it slows us down and draws our attention inwards so that we can reconfigure our lives without the person we have lost.
Stage 5 – Acceptance
Acceptance is the final stage of the grieving process and can only be reached by way of the other four phases, there are no short cuts. Acceptance of our loss brings with it a softening of our grief and a way of carrying the memory of our loved one with us through the rest of our lives in a way that brings us comfort and peace.
It is important to note that this process is not a linear one and it is normal to pass through a stage but then need to return to a previous one in order to move forward again.
Not knowing when we will die means that for most, if not all of our lives we reside in the denial phase. Pre-programmed by nature to avoid dangers that we cannot defeat we work hard to avoid the reality of death and this, for the most part, serves us well. It enables us to live our lives relatively free of thoughts of death. However, as soon as we become aware of when we will die, avoidance is no longer an option and we are forced out of denial and into the rest of the grief process.
For all involved, friends and family as well as the person who is considering their right to die, a (subconscious) reluctance to leave the denial stage and embark on the rest of the process can make it difficult to give the issue thoughtful consideration. However, there may be some benefit to embarking on the grief process whilst a person who has decided to die is still alive.
For the person who has chosen to die, they will experience the opportunity to grieve for themselves, something which most of us do not expect to have to do. For friends and family, they will be forced out of denial and into a consideration of life without their loved whilst that person is still with them. Both scenarios present complex emotional challenges but also important opportunities. Knowing when someone will die and having the time to anticipate, understand and prepare for this allows us to gather resources (both psychological and practical), facilitate resolutions and spend time together in way that would never usually be possible. This can bring with it a huge comfort and psychological strength for what is to come. In addition, working through emotional challenges with the support of our friends and family can offer us significant protection against emotional distress and ongoing mental health problems like anxiety and depression.
The process of grief is vital to our mental health and indeed our survival. Although it is tempting to try and avoid or delay it when it is our time to work through it, doing so will be detrimental to our emotional health. It may be that giving those in need the right to decide when they die could facilitate the grief process and enable people to navigate it more successfully.
Understanding The Choice
When a loved one chooses to end their life it can be a confusing and terrifying for their friends and family. Being able to understand this choice is pivotal if those affected are to come to terms with the choice, navigate their way through the process and eventually find some peace.
What we need
Understanding someone else’s choice requires empathy, the capacity to understand someone else’s thoughts and feelings by imaging what it is like to be them. However, having empathy is extremely challenging because our default position is to use ourselves as a point of reference (‘well I feel like this so will you too’) and to see the world through the lens of what we need. This means we can become distracted or even consumed by what something means for us and have little left with which to consider another’s point of view. This is particularly true in the context of strong negative emotions. It is therefore hard sometimes to see past our own needs and feelings to those of others.
Fears of loss
A connection with those that we love is one of our core needs, and as a result the loss of a loved one is possibly our biggest fear. From a purely evolutionary point of view our survival is dependent upon our connection with others, we are stronger together than apart, so we hard wired to fiercely protect this. Fears of loss underlie many of the emotional and mental health problems that we struggle with (e.g. anxiety and depression) and in its most severe form this fear can dictate the choices that we make and the way that we live our lives. How strong our fear of losing someone is will be dictated by our early experiences, for example if our parents have been emotional or physically absent, as adults our fear of re-experiencing the loss of those close to us will be much greater than if for example, our carers have been reliably available. Our fears of loss will influence our capacity to deal with someone we love choosing to end their lives and a hard wired tendency to protect a connection with them can lead us to resist it.
Developing an Understanding
Understanding someone’s decision to end their life involves accessing real empathy for their choice and is an essential step towards accepting it and tolerating the pain of losing them. In order to do this we must identify and then put to one side what we need from the situation (and from them) and our fears of loss. Doing this will free us to thoughtfully consider the choice that our loved one has made, by stepping back from ourselves we will have the capacity to imagine the thoughts and feelings that the person we love is experiencing and how they have come to the decision that they would like to take control of their death. Empathy with their choice will eventually lead to the acceptance of it.
Illness And The Importance of Considering Control
Living with a chronic illness can be stressful and many people will go through a time when they feel completely out of control of their lives. Learning to live a meaningful life with chronic illness is a challenge, which many people are successful in. But this can change if an illness is progressive or worsens and causes a marked deterioration in quality of life. The coping strategies any one of us has will have a tipping point at which they cease to be successful. When quality of life is low and coping strategies have been exhausted, the sense of poor control may filter in again.
When considering the right to die debate, it is important to think about this issue of control with regards to people who have lived with a chronic condition for a long time and it progresses to a terminal stage. The emphasis now in modern palliative care is on having what is described as a ‘good death’. What does this mean, and how does this influence the discussion around our right to die?
There is no simple description of what constitutes a good death as this will be very personal and individual. Some may think of a good death as being pain-free, or being with their loved ones. For others, the place may be important, for example being at home or in a hospice. What unifies a good death is a sense of control. Control over an uncontrollable problem. Even small elements of control may be helpful at such a time. If we try to understand why control is important we simply need to look at ourselves for an explanation. Feeling like we have a sense of control over things is part of our daily life. We like to control what we eat, what we do and where we go to work. Right from the moment we break through from being a child to being a young person we are fighting to make our own choices and develop a sense of control over our own lives. When considering the right to die debate it would be thoughtful to include feelings of control as a consideration.
Friends & Family Perspectives
For most people, the perspectives of friends and family members is of importance in major life decisions. We care about what they think, how they feel and the impact of our decisions on those we love. Conflict with friends or family members may be triggered by disagreements in a major decision. At best, it can bring people closer together, and at worst it can cause complete relationship breakdowns or changes to mental health. For these reasons, we need to consider the perspectives of friends and family when it comes to thinking about the right to die. We do not live in isolation and our decisions have an impact on others. Now we explore some of the emotions which can arise, in family and friends, in the situation where someone is making a decision on their right to die.
Guilt and shame
Feelings of guilt and shame may arise in family and friends who are involved in the decision-making process. Many factors will contribute to this, for example current relationship difficulties, cultural background, their age and their relationship to the unwell person. Guilt and shame are two emotions which are taboo, for obvious reasons. People can feel ashamed of their shame and can feel guilty about feeling guilt. Therefore, it is vital that family and friends involved in this difficult decision-making process have adequate support to allow people to process any such emotional experiences.
Anger is a normal human emotion which everybody will experience in their life. It is likely that family and friends may feel intense anger towards their loved one, towards the healthcare system or just generalised anger in a right to die situation. As anger is an adrenaline-producing emotion, it may change the way people communicate with their loved ones or drive them to behave in challenging ways. Anger can often be a covering layer for the protection of other difficult emotions such as anxiety or depression. Being angry at someone else is easier as it involves projection of one’s distress onto others. Obviously, this can cause more distress to everyone involved and would suggest that immediate systemic support is indicated.
Loss and Love
Ultimately, feelings of loss and love are connected. We feel loss more with those we love, and we have an acute sense of love when we feel grief or loss. It touches the same part of us although the two emotions ‘feel’ different. In the case of the person who is actively seeking their right to die, anecdotal evidence suggests that family and friends demonstrate both emotions. The grief and loss process may start as soon as their loved one starts speaking about their right to die, as it raises the possibility of separation. This is an incredibly challenging experience for anyone and will come with an immense wealth of mental pain. What underlies this is also love for the person who is ill. That love may be a driver for family and friends to demonstrate unyielding support for the suffering person in their decision, as our emotions frequently drive our behaviour.
We can summarise the above by understanding that family and friends are likely to experience mixed emotions in the situation where a loved one wants to consider their right to die. Emotions are fluid and changeable, but it is important to be aware of how family and friends may be affected by this issue, they are also seen as people who are in need.