“Everything that has a
beginning has an ending. Make your peace with that and all will be well.”
Jack Kornfield (Buddhist teacher and author)
As I am about to discuss
a very difficult and sensitive topic this week, I would just like to mention a
couple of things in advance:
- If you are going through a difficult time yourself, please do not suffer in silence. Try to reach out to family, friends and colleagues and/or seek help elsewhere (e.g. in the UK you can contact the Samaritans under: phone- 116123 or email: jo@samaritans.org).
- All of us are going to be affected by a significant health problem, face our own death and that of a loved one at some point. I do not claim that I am particularly good at it myself and I do not want to underestimate or in any way belittle the anxiety and pain that such a situation causes. All I am attempting with this post is to summarize and present some of the available literature in order to get an understanding how we may cope with these situations a little bit better.
Although I do
not feel qualified enough to discuss specific physical and mental illnesses in
detail, I think that a blog about a Good Life would not be complete without
discussing what happens when we are affected by severe and/or chronic illness
or when life comes to an end. Modern high-tech medicine has for a long time
treated the body (including the brain) as a distinct separate entity to the
mind, but of course there is there is a strong, bi-directional mind-body
interaction.1,2 What is going on in our physical body and the brain
has an effect on our mind and what is going on in our mind has an effect on our
physical bodies including the brain. This concept is of course not new, as it
is the essence of many traditional medical traditions, but what is new is that
this idea is now being incorporated and validated in modern medicine.
This means
that leading scientists and doctors on the ground increasingly recognize the
importance of an integrative approach (considering the whole patient, not just
the organ which appears to cause trouble at the given time), and this is also
why discussing the effects of severe illness and death on our well-being is so
important to me.
Facing mortality
Our brain has
a great capacity anticipating and imagining negative events, and our own death probably
represents the most terrifying negative event that we can think of. Death means the ultimate loss of control, the
end to our connection with others, and to the many other things that matter to
us.3 We go through our lives knowing that we (and every single
one around us) will die, but we just don’t know exactly where, when and how
this will happen, or what level of pain and suffering it will involve- and all
this is very scary.
The fear of
death has been scientifically examined, which has lead to development of the
terror management theory. According to this theory, many human activities
including the search for meaning and
the need for self-esteem are an attempt
to give ourselves a psychological sense
of security, as a sort of ‘defence’ against the deep-rooted anxiety caused
by our awareness of mortality.
One of the
consequences of our fear of death is that we tend to avoid anything to do with
it. We try not to think about death and live our life as if it would last
forever. Numerous experiments have shown that even the subtlest reminder of
death can significantly change our behaviour without our conscious realization.3,4
It not only makes us become uneasy and look away when seeing severe
injury and suffering, but it also has an influence on our worldviews and makes
us have stricter moral judgments.
The problem
of course becomes more acute when we can no longer look away and pretend all is
fine: if we are personally involved in a serious accident or affected by a
severe and/or chronic illness, or if this happens to someone close to us.
So how can we manage the terror?
This is of
course a deeply personal issue, but here are a few suggestions, which have been
shown to help people to come to terms with mortality and/or debilitating
illness. Both, death and serious
diseases cause the feeling of a loss of control, dignity and threatens to break
our connection to others. This also applies to illnesses, which are not
directly life-threatening but which significantly affect the quality of life,
such as chronic pain, some physical disabilities or mental diseases. In all these
circumstances, everything that increases our sense of security and certainty,
self-esteem, normality, continuity and feeling of connection is likely to
provide us with comfort:
- Meaning: As explained above under the terror management theory, meaning is one of the central concepts, which can help us cope with the fact of mortality.3,4,7 Meaning provides comfort because it can give us a goal, a sense of belonging and security; it broadens our perspective and focuses our attention outside ourselves (self-transcendence).1,3 This can give us the strength to carry on day after day even under the most difficult circumstances. Importantly, meaning does not need to be anything grand. It is a fluent process and we need to form, find and claim meaning ourselves,3,6,7 rather than passively waiting for meaning to present itself to us. Meaning can be found in various ways, including taking an active part in family life, caring or helping others. For example, some patients with locked-in syndrome (a condition in which the patient is fully conscious but has usually lost the control of all muscles except for those of the eye) report that despite all challenges by their severe disability, they still feel active and make contributions to their families.1 The role of meaning can also be seen as a ‘positive personal legacy’ which will outlive us, for example by influencing the lives of other people in a positive way.7 For more information about meaning see also What Do You Live For- About Finding Meaning.
- Acceptance and courage can help us to deal with the uncertainties of death and illness.1,5 They help us to calm our urge for absolute control but also give us a clear vision for changing the things we may be able to change. I have only recently stumbled across a beautiful quote by psychiatrist Carl Jung who has said: ‘We cannot change anything until we accept it. Condemnation does not liberate, it oppresses.’ Acceptance means acknowledging that illness and death are affecting our life, and this act is liberating because it allows us to change our attitude and/or behaviour in order to cope better. Although we cannot change the reality of death, we can accept the fact that it is a normal part of everybody’s life cycle and in this way death loses some of its oppressing power. Similarly, we cannot change that we (or someone else) are affected by illness, but we may be able to change many aspects of the situations, to make it easier to bear. Acceptance and courage can be specifically cultivated – for more information see also Making Your Peace With How Things Are- About Acceptance and Courage- Overcoming Your Fears.
- Self-transcendence and interconnectedness: Having the sense of being part of something bigger than we are is associated with a higher level of wellbeing in our daily lives,1,6,7 but when dealing with death this concept obviously gains a new significance. Dissolving our own boundaries and expanding our physical, small ‘I’ into a larger, bigger ‘we’ or having the feeling that we a part of a larger value system, an integral part of nature or the world as a whole gives us a feeling of connection and reassurance.1,2 Importantly, we do not need to be religious, believe in God or some other divine force in order to feel self-transcendence and interconnectedness, as this experience can also be reached in other ways, for example by contemplative practices.1,2,6
- Keep in control where possible: When dealing with a serious illness and facing mortality, the loss of dignity and control is experienced as one of the most difficult aspects.2,5 Although we cannot control everything, there are still a lot of things which can be influenced. It is important that we feel in control over decisions, which are made about us regarding the management of our condition.2 For this, we need a clear vision of our values, our hopes, fears, and goals.5 We may also need to get more detailed information about our illness and available treatment options for the disease and/or associated pain. We may need to ask for second opinions and we may have to speak up if we feel that our wishes are not taken on board when treatment is planned.
- Keep connected, seek help/advice/support: Stressful situations including severe illness tend to make us want to withdraw from others, but it is very important to avoid isolation, as other people are an important source of comfort and strength.1,6 Other people can also give us advice and guidance in situations when we have to make difficult decisions, or encourage us to continue taking an active part in life.
- Look at what is right with you: It is frustrating if we can no longer do things, which we have previously regarded as normal. Everybody who has had even just a temporary, limiting injury can attest this. However, focusing on our limitations and what we can no longer do means that we are letting our illness define us, and this often makes us limit ourselves even further.2 Jon Kabat-Zinn, founder of the Mindfulness Stress Reduction Program, which has shown great effectiveness in improving the quality of life of people with chronic and/or terminal illness said: ‘from our point of view, as long as you are breathing, there is more right with you than wrong with you, no matter what is wrong with you.’ Looking at the things which are still right with us and finding areas, where we can actively participate in life gives us a greater sense of freedom, self-esteem and self-determination.1,3
- Making the most of your time: ’Adding life to days and not days to life’ is the motto of the hospice movement, which has made looking after terminally ill patients its priority, with a particular focus on maintaining quality of life, patient dignity and control.5 Whether we are facing death or a chronic illness, following things may help to make the most of our time:
- Focusing the attention on the present moment by trying to be mindful and open to your experiences. Mindfulness practices and meditations have been shown to be greatly effective in the management of chronic illness and pain,2 see also Staying in the Moment: Mindfulness and Conscious Appreciation.
- Even in the most difficult times und under the most harrowing circumstances, there are still opportunities to experience positive emotions.2,5,7,8 Interestingly, it appears that it is the frequency and not the intensity which makes the biggest difference.7,8 In other words, make sure that you notice and appreciate all the small positive moments of joy, gratitude, serenity, interest, hope, pride (in your achievements as small as they may be), amusement, inspiration, awe, love and kindness.
- Prioritize: Make more time for what makes you genuinely feel good.8
- …but allow yourself to feel the pain: As much as it is still possible to feel positive emotions when facing illness and death, it is of course also a time of sadness, stress, fear/anxiety and sometimes anger and despair. It is very important not to try and suppress negative feelings. It is not possible to selectively numb negative emotions- if we do this, we concurrently reduce our ability to feel positive emotions (one of the reasons why depression is such a debilitating condition). So we need to allow ourselves to experience and work through the negative feelings before we can start coping with the situation constructively.7,8
- Basic self-care: Facing serious illness and death can be very stressful. In order to deal with stress and associated negative feelings most effectively, it is absolutely essential to get enough sleep, enough rest, good quality food and enough exercise.9,10 Sleep is particularly essential as a lack of sleep directly results in a further increase in anxiety and stress.10 More information on basic self-care can be found in Don't Forget The Basics. Self-care also means supporting your body in other ways, such as taking medication regularly, performing specific exercises as required for the particular illness, and avoiding things, which may be harmful.
Helpful books on the topic:
Several friends and
colleagues have recommended these remarkable books on the topic, which are not
only informative but also profoundly inspiring despite the seriousness of the
topic:
Atul Gawande is a surgeon
who has written many interesting books, but Being Mortal: Illness, Medicine
and What Matters in the End is certainly special. In the book he
explores what ageing, illness and mortality mean to us now, and what has
changed throughout history and across cultures. It is a very sensitively
written book with many stories of patients and Dr Gawande’s own family. The book shows
the importance of opening ourselves to the reality of death in order to make
the right decisions when the time comes. 
When Breath Becomes Air is the personal account
of neurosurgeon Paul Kalanithi, who was diagnosed with terminal cancer at the
age of 36, and who died before he could fully complete the book. Paul Kalanithi
takes the reader through his transition from a doctor to a patient, writes
about how to make difficult decisions and considers the importance of a
meaningful life.
Preview: As discussed above, the sense of self-transcendence
and interconnectedness can help us to deal with times of uncertainty.
Next week, we are going to focus on this topic a bit more and find out in which
ways taking the larger perspective can make us happier.
References and further reading:
1.
Siegel D. Mindsight: Transform Your Brain with the New Science of
Kindness. Oneworld Publications; Oxford, UK. 2011.
2. Kabat-Zinn
J: Full Catastrophe Living: How To Cope With Stress, Pain and Illness Using
Mindfulness Meditation. Piatkus. 2013.
3.
Dias D: The Ten Types of Human: A New Understanding of Who We Are and Who We
Can Be. William Heinemann; London, UK. 2017.
4.
Burke BL, Martens A, Faucher EH. Two decades of terror management theory: A
meta-analysis of mortality salience research. Personality and Social Psychology
Review. 2010;14(2):155-195.
5.
Gawande A. Being Mortal: Illness, Medicine, and What Matters in the End.
Profile Books; London. 2014.
6.
Graham L. Bouncing Back: Rewiring Your Brain for Maximum Resilience and
Well-Being. New World Library; Novato. 2013.
7.
Lyubomirsky S, Tucker KL. Implications of individual differences in subjective
happiness for perceiving, interpreting, and thinking about life events.
Motivation and Emotion. 1998;22(2):155-186.
8.
Fredrickson B. Positivity: Groundbreaking Research to Release Your Inner
Optimist and Thrive. Oneworld Publications; Oxford, England. 2010.
9.
Seppälä E. The Happiness Track: How to Apply the Science of Happiness to
Accelerate Your Success. Piatkus; London, UK. 2016.
10.
Pittman CM, Karle EM. Rewire Your Anxious Brain: How to use the neuroscience of
fear to end anxiety, panic & worry. New Harbinger Publications; Oakland.
2015.
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