Is there a Universal Key to Caring for the Dying, Whatever Culture they Belong to?
As a thanatologist, I have been questioning myself for a long time on this point. The economic crisis, the wars and the planetary climate issues are most likely eliciting one of the biggest massive relocations of human beings in our history.
Now, death does not care whether you have your green card, whether you are unfamiliar with the language and religious traditions of a new place, or whether your family can or can’t join you at the end of your life. Death just “comes without warning” as Tibetans say, and those who are there to care for you, if any, are facing one more problem: how to communicate with you doctors, nurses, hospice personnel, volunteers.
Madeleine Leininger, founder of “transcultural nursing,” thinks that it is crucial to be aware, first of all, of one’s own cultural inheritance, and to use it as an instrument to understand other cultures: “By respecting differences as well as similarities, we can react appropriately to the marvelous gift that is human diversity.” The anthropological approach considers that in any situation, a human being has to be seen as connected with his original milieu, with which he or she nourishes a rich, symbolic bond.
If it is true that each culture has developed, in time, a number of peculiar behaviors that allow their members to face universal crises like sickness and death, these “local” solutions have to be considered as part of the cure.
Caregivers need to grant their clients the right to their diversity in the face of sickness and death, while reconciling this with our equality in terms of general rules: diversity is not to be assimilated into the main culture, nor to be isolated by generating stereotypes and bias.
Can the caregivers become multi-specialized in a virtually infinite number of cultures, languages and religions? They can’t. They urgently need not only a universal key, but also a very quick one (death does not wait) to discover—within a multitude of different people, all from different backgrounds—what kind of cultural, philosophical, religious or lay solutions their clients are familiar with, and bring the client back in contact with these strategies that are deeply rooted in them.
Mission impossible? No.
There is a way: the ECEL, or Empathic Care of the End of Life.
What is it, and how does it work?
It took me more than 20 years to transform an intuition into a true method, as a method requires solid scientific basis, and science was able to give all the appropriate answers only recently.
This method trains the caregivers to access a special state of consciousness, from which the empathic communication shifts from a mass of data we continuously, but unknowingly, exchange with the world around us, to information we become aware of.
Neuroscience, neuro-cardiology and even quantum physics explain to us nowadays how empathic communication happens (this is the Western root of ECEL) but it is a very ancient Eastern tradition that preserves the training through which we can become “aware, empathic communicators.” The Tibetan “training of the mind,” supported by a second training in compassion to guarantee the ethical quality of our empathic communication, and by a large traditional thanatological study on how perceptions change in the dying, allow us, the caregivers, to learn how to adapt to these changes, while communicating with the dying. This is the second root of ECEL.
In a nutshell, we know from the Tibetan thanatological studies that a dying person’s perceptions change gradually while getting closer to death, and that the dying are more and more empathy-inclined. It means they feel what we feel, so the way we are is more important than the things we do and say. Empathic communication becomes prevalent for them. Be peace, and they will most probably die in peace.
Training is available to help us transcend our usual mind state, which is mainly based on the rational brain. This is a cultural gap we need to fill, as Western society does not encourage children to be silent, to learn passively, and during the years in which this would help them to develop empathic communication, they are pushed toward a large amount of activities that make them good competitors in order to survive this complicated life.
In fact, adult’s brain waves encompass the lowest frequencies (Delta waves, corresponding to deep sleep) to the highest (Beta and Gamma, corresponding to our usual conscious activities), but things are different for children.
Up to two years old, children mainly function with Delta waves, then from two to six they spend most of their time in Theta state, which is directly linked to imagination. Alpha waves (having mainly to do with awareness) only start to appear when they are six to twelve years old, while Beta waves—corresponding to cortex activities, like analysis, concentration and reflection skills—appear later.
Instead of allowing us to live a state of complete receptivity during the first six years of our life, in which nature makes us especially sensitive and impressionable, so that we can “know” the world in passive ways by downloading and recording all the information and quickly learning how to adapt, the adults in our society see in this lack of discernment a great danger, as any reality can then become an absolute reference for children; material for building up their future identity.
In the West, then, the preference goes to a precocious education, pushing children into activities that are considered to positively condition their future personality.
This, unfortunately, has a side effect: our empathic potential is not fully developed, and if we still are very empathic when we are more fragile and more vulnerable, and therefore more in need of the support of the group, like during childhood and at the end of life, in the remaining periods of our existence we tend to suppress this ability.
Hence, we have to re-train in empathic communication.
How does the training work?
Neuroplasticity is no longer a mystery: our brain can change form, by repeating a physical action many times, like athletes and musicians do, but also by repeating a mental action, a thought, a visualization.
We start observing the breath, as we want to get used, first, to making an unconscious activity become conscious. This is what you need if you want to become aware of information you are presently unaware of. As soon as we realize we became distracted, we go back to the breath. This “going back” is a crucial ingredient; the repetition that strengthens the part of our brain we want to train. Another fruit of this popular meditative practice on breath, present in many traditions, is a peaceful state of mind. Tibetans call it Shiné, “calm abiding.”
Once this calm state becomes a habit, the mind becomes clearer. Thoughts still are there, of course, but, as Sogyal Rinpoche says, “Like the space is not defined by the objects that cross it, so the mind is not defined by its thoughts.”
We start to experience a state of consciousness much more vast and lucid than our usual ordinary state of mind. Again, repeating this experience allows us to enter this state at will, and to remain there longer. In this state, more information arrives. Perceptions are clearer. We start to “know the other from within himself,” instead of just being outside him.
Empathy is a two-way communication; therefore we can intentionally cultivate peace, to enable the dying or the child (remember both are very empathic) to experience it. This is where it is crucial to train in ethics, and especially in compassion, which is the desire that others’ suffering comes to an end. The Tibetan tradition provides us with this training too.
As Dr. Tania Singer recently discovered, empathy and compassion involve different parts of the brain; this explains why one can be proficient in empathy and use it to better torture one’s victim.
What is the result?
“Knowing the dying from within himself” helps us to bypass a number of misunderstandings, due to linguistic problems (the dying might not speak English well), pre-linguistic (he might belong to a background I do not know at all), meta-linguistic (the same word might exist in his language, but with a different meaning, i.e. indicating a different part of the body), cultural (his representation of death or sickness might be different from mine; he might have, for example, a level of acceptance unthinkable for me, or see painkillers as a danger to his mind’s lucidity) and meta-cultural problems (if he were in Morocco, he would interrupt the Ramadan to take his painkiller, but he won’t do so in the US because in this moment he especially needs to feel part of something greater).
It also helps us to deal with the complicated evaluation of proxemics, the impact of space on interpersonal communication, which is so important when we have to deal with people we need to touch with our hands. The four interpersonal “distances” Hall measured—going from the intimate one, 0 to 45 cm, to the personal one, 45 to 120 cm, reserved for friends, the social one, 1.2 to 3.5 m, reserved, for instance, for communication between teacher and students, and to the public one, greater than 3.5 m—of course are not standard, as they vary from one population to another, and according to sex differences.
How to touch, what part of the body can be touched...often this information is hidden in the unspoken world of a dying person, who has not the time nor the strength to tell us everything. But if we are capable of cultivating an aware, empathic state of mind, if we can remain there with some stability, then this kind of non-verbal information has a better chance of being consciously caught without even a word. The result is a spontaneous adequacy of our silence or words, of our gestures or absence of gestures; a peaceful, respectful environment is created that will make all the difference.
These are some of the requirements for dying with dignity.
Daniela Muggia is an Italian thanatologist co-author of The Impact of Empathy—A New Approach to Working with ADHD Children and the winner of the prestigious Terzani Award for the Medical Humanities. For almost 30 years she studied the Tibetan tradition of death and dying with Sogyal Rinpoche, author of the groundbreaking Tibetan Book of Living and Dying. She also trained with Cesare Boni at Naples University, Italy. After more than 20 years of working with the terminally ill, she has developed the ECEL method, Empathic Care at the End of Life; one of the most popular courses taught in hospitals, hospices and for Masters degree programs at universities in Italy and other countries.