To be around people who are approaching death is to enter a uniquely strange world. The most intensely joyful, sad, profound, hilarious, mundane, exhilarating and tragic situations follow one another in rapid succession. All of the extremes of human existence are concentrated here, in the liminal space between life and death. It is an eclectic bunch of people (the curious, the spiritual, the wounded healers) who choose to pursue one of the vocations where these extremes are encountered daily – the nurses, the doctors, the counsellors, the chaplains.
Navigating the emotional terrain during this time can be extremely demanding; as a brand new staff nurse in a hospice I remember wishing that I could accelerate the growth of whatever protective shell I needed in order to not find myself sobbing on the way home from a shift, waking up in the middle of the night wondering how Betty was, and whether Stan had made it to the hospice in time to say goodbye.
I reasoned at that time that I was not normal. It seemed that if you worked in palliative care for long enough, you could grow a protective shell around you. Certainly, mentors had categorically informed me during my training that I needed to toughen up, that I’d get used to it, and that I’d better “not get too involved” if I wanted to avoid burning out. I still hear this from my students today – the myth of the protective space shield.
The design of a space capsule requires attention to the demands that are to be placed upon it. As it re-enters the earth’s atmosphere after a jaunt in space, it must be able to withstand temperatures of several thousand degrees, as well as the friction created by travelling through air at speeds of 16,000mph. In addition it must be able to withstand a sudden deceleration from these speeds, eventually to stillness. The heat-resistant ablative shield on space capsules is apparently constructed from a hi-tech compound made of carbon fibre in phenolic resin, which gives it the qualities of lightness, heat-resistance, and low friction to give it the required protection.
The heat experienced in daily proximity to suffering is even captured in the everyday language used in the healthcare service: feeling the heat, firefighting, and of course burnout. We witness friction too – death and dying can bring out the best and the worst in people. Dynamics within and between healthcare teams, patients and families can be strained in some situations, for example where there is disagreement about the right thing to do – this is sometimes seen when, for example, family members and healthcare professionals have different notions of where “enough” treatment has been given, as has been seen in some of the accounts of the mis-use of the LCP. The third important property of the space capsule is the ability to cope with variable and extremes of speed. Particularly for those caring for the dying in the acute hospital setting, the values placed on speed and efficiency by the current configuration of healthcare services means that professionals are often required to balance their own notions of quality (which may be at odds with the ideals of the organisations), and the speed at which they are expected to deliver care. Staff must be able to function within the paradigm of speed and efficiency, ensure patients’ needs are met in the acute care setting, yet must also be able to find time to care, and be able to change gear when (if) dying is recognised.
The analogy is useful up to a point, but it fails at the point where we need to empathise, understand and act compassionately towards those who are suffering. Too thick a protective shield may make it difficult to recognise suffering in others, and too thin a shield will allow us to peer out of the glass of our space capsule and see others as they are, but may cause us to burn out and disappear into dust. Is it possible to be defended and protected against the detrimental effects of stress, whilst simultaneously being able to reach out and connect with patients, families and colleagues?
Resilience refers to the ability of a person or a system to regain its normal balance following a disturbance of some kind. It has been described in a vast range of disciplines. In physics, resilience or elasticity describes the plasticity or flexibility of a system, such that application of a physical stress allows it to return to its former state – a bit like stretching a rubber band and then letting it go again. Different substances show different levels of resilience; stretch rubber beyond its limit, and it snaps. In ecology, resilience refers to the ability of a system to return to a stable state after some disturbance or other. For example, the falling of a large tree creates a swathe of damage in a forest; yet this allows saplings an opportunity to grow, which without the collapse of the giant would never have received sufficient light or water to thrive. In societal terms, I saw first hand the nature of a resilient community when my home town was seriously affected by the floods of 2012; within days many carpetless and muddy shops was bustling with activity again, and the distribution of furniture and household good from those unaffected to those whose homes were lost was inspirational. The human stress reponse is an example of biological resilience to respond to immediate threat through production of hormones such as cortisol, and then return to its pre-stress state through the inhibitory action of cortisol on its own production – a neat design which (usually) ensures the stress response is self-limiting. In human terms, there is fascinating work that has looked at the ways in which people have survived and thrived through physical and emotional adversity – such as Garmezy’s work on children thought to be at high risk of mental health problems, Emmy Werner’s groundbreaking 32-year study of children of alcoholic parents growing up in Kauai, to Victor Frankl‘s astonishing account of survival in the Holocaust through creating meaning from suffering and subsequent research by scholars such as Roberta Greene.
The same stressor will affect two people in different ways – this has implications for understanding interprofessional dynamics as well as the responses of individuals and families to challenges at the end of life.
It is helpful to think of resilience either as:
- a buffer-capacity – how well an individual or system can resist losing its equilibrium
- a dynamic state – how quickly equilibrium can be restored after it has been disturbed
In the first definition, resilience seems to be similar to hardiness, or resistance. I guess this is the kind of resistance that a space capsule requires. I would suggest that it is the second kind of resilience that is most helpful for people caring for others at the end of life. It is often said that health professionals need a thick skin in order to survive; perhaps in fact that thick skin is the very thing which is detrimental to allowing care and compassion to be expressed. So unlike a space capsule, which remains much the same, other than a little charring and a dent or two, once it lands, the resilience health professional is one who is constantly growing and changing as a result of learning that takes place from adversity. Importantly, whatever stressor causes the disturbance in the first place is a vital part of resilience – you have to be resilient to something. The test of a close relationship is not in how the partners connect when all is well in the world, but of how they respond, grow and make meaning of difficulties; hence the significance of acknowledging the extremes of “for better or for worse” in traditional marriage vows. It is not the actual stress, but the response to it, which is the indicator of resilience.
The image of the oak tree growing through and around barbed wire seems to capture the principles of resilience perfectly. The scar from the wound is there, but the tree has continued to grow and thrive around it. More than that, the bark around the barbed wire is thicker, adapted to the constant presence of this painful invader. Growth continues, but around, through and despite the wound.
WHAT RESILIENCE IS NOT
- Putting up and shutting up – critics of resilience theory suggest that it is used as a political device, a tool to get people to tolerate otherwise intolerable working and living conditions.
- Resistance or Hardiness – it is perfectly human to be emotionally affected by our experiences. Attempts to be impassive when working close to death are futile, if not potentially detrimental to the people we are caring for. Knowing where the suffering of another ends and your own suffering begins is the topic of the book I mentioned in the last blog on transference and countertransference. But boundaries need to be flexible and changing, constantly dancing the balance.
- Fixed – resilience varies between individuals, and in the same individual resilience varies in different circumstances and at different times.
REARRANGING OUR SPACE CAPSULES
An important question is whether resilient qualities are inherent in our personalities, or whether they can be acquired, whether through experience, role modelling or education, or a combination of all three. Whereas at one time it was generally assumed that our personalities and traits were fairly fixed, convincing evidence in neuroscience demonstrates the potential for the neurones of the brain to change and adapt in the same way that many other parts of the body are able to – for example, the hippocampal region of the brain in London taxi drivers are shown to be larger than those of the general population. The hippocampus is the part of the brain associated with declarative memory. Interestingly, once they cease to drive cabs, their hippocampi return to their usual state – it would be an inefficient use of brain to use all that energy where it is not required. And taxi drivers do not begin their careers with oversized hippocampi – they are developed through learning. This characteristic is known as neuroplasticity – the ability of the brain to adapt. In much the same way, it is now thought that the brain can adapt to cope with different situations, given the right conditions. Our habit patterns are acquired and learned, and with the right focus of attention can be reorganised and relearned if they are not helpful to us. When faced with adversity, people consciously make adjustments in three areas: they search for meaning in the experience, they try to regain control over the particular event as well as in their lives more generally, and they try to restore their self-esteem. The image below shows the work of Mario Langler, who creates art from recycled and obsolete machinery (I could not find any examples of artists working with repatriated space capsules, but this was close).
There are many areas of research which are beginning to reveal interesting findings relating to enhancing resilience. Cognitive behavioural therapy (CBT), founded on similar precepts as meditation, is the only psychological intervention that has a NICE-recognised evidence base for moderate depression and anxiety. Other ways in which resilience can be enhanced have been discussed by doctors Steven Southwick and Dennis Charney, who have worked extensively with trauma survivors. Of the impressive range of practical teachings in their book, five seem particular resonant for healthcare professionals:
- Facing your fears – turning towards, rather than away, the things which frighten us. Pema Chodron, author of “When Things Fall Apart” describes “getting the knack of catching ourselves, of gently and compassionately catching ourselves…We catch ourselves one zillion times as once again, whether we like it or not, we harden into resentment, bitterness, righteous indignation”
- Social support – they use the example of “learning the tap code” – prisoners who established connections with one another through tapping on adjacent cell walls
- Role models – finding the inspiration through the acts and speech of another, whether an ancestor, a relation, a colleague, a celebrity, a patient
- Moral compass, ethics and altruism – doing what is right and having conviction in the knowledge that one’s action is morally good can be strengthening in the most adverse situations
- Physical and mental fitness – Exercise is to the body what meditation is to the mind. Mindfulness meditation has been shown to increase the size of the parts of the brain related to both memory and empathy, as well as enhanced activity in those parts associated with metacognition – awareness of our emotions and how they relate to memories and beliefs.
In Vipassana meditation, the student is encouraged to use the capacity developed through meditation to examine the fundamental and shared characteristic of all phenomena; that of impermanence. By doing so, one becomes more able to recognise that one’s responses and reactions to transient things. My Vipassana meditation teacher gives an amusing discourse on the final day of the 10-day silent retreat, where he gently chides the students for expecting to find perfect equanimity in themselves when they re-emerge from the retreat environment into the busy world outside. He suggests that improved equanimity is to be seen when the students’ reaction to an event is not as intense as might have been previously, or when an intense reaction occurs but e restoration of equilibrium is more rapid than it once was. In other words, we cannot expect to be mountains, unmoved by the plight and suffering of others or of ourselves. But we can recognise that the nature of all suffering is identical, even if the source and manifestation differs, in the fact that it will pass.
I have never told a student to toughen up, nor suggested that they will get “used to it”. If there is a neat answer to the perennial delicate balancing act between vulnerability and openheartedness, and self-protection and resilience, I don’t know of anyone who has found it. I do however think that every experience encountered presents us with a choice – do we try to avoid this experience, redefine it, or deny it? Or do we make use of it as a tool towards growth and strength, an opportunity to strengthen the bark of the tree and allow continued expansion of knowledge, strength and compassion? The power of reflection is one of our most important tools in developing insight and self-awareness, and I hope to look at this in the next blog – how to combine and synthesise reflective practice with death awareness to enable continued daily growth of knowledge, strength and compassion.