It is hard to find a piece of palliative care policy or a newspaper article without it being accompanied by pictures of hands – they have become a ubiquitous symbol of end-of-life care. Just as images of the human skull have been incorporated into mainstream fashion to the extent that their symbolic potency has become diluted, it seems that hands are increasingly becoming the standard representation of what it means to care for someone at the end of life.
I recently completed 186 hours of observations of care of the dying in an acute hospital. It has surprised me that it is people’s hands, not necessarily their faces, that appear in my mind’s eye as I read through my field notes. One day I was struck by the remnants of silver sparkling nail varnish on a woman’s fingernails; I never met her awake, she died a few days after I arrived. As I sat, I found myself gazing at those hands, wondering about who had painted them, whether she was still awake and talking to them, how long it takes nail varnish to grow out. I saw wrinkled, liver-spotted hands, scrawny, emaciated hands, oedematous hands, long nails with unidentifiable grime caked beneath them, rheumatic gnarled hands, twisted out of shape, cold hands, warm hands, clammy hands, fingers that grasp at blankets, pluck at air, and wave away invisible imagined insects, clenched fists, trembling hands, palms turned upwards in surrender or clasped together in prayer.
Families sitting vigil by bedsides of dying loved ones sit transfixed as they watch the rise – stop – fall – stop of the slowing breathing that heralds death’s imminent arrival. In this time of waiting there is little to be said. This is when hands often do the talking. Merleau-Ponty points out that in the evolution of language, gesture predated speech by many years. Gesture was the immediate conveyance of emotion or intent to another person. As speech became more abstract, less onomatopoeic, the things to which the speech referred became more distant from the things themselves. The potency of gesture is rarely reflected in the words used to describe the emotion. Hands often convey emotions that might be suppressed in facial expression and there is an increasing body of evidence that looks at they ways in which hand gestures can supplement the emotional content of words and faces.When my father-in-law was dying, the only we could tell how he was feeling was in the way he gripped on to the cot sides of the bed, as though he was frightened of falling, as though he needed to feel something solid. If we asked him what was wrong he would frown, fumble for words, and then more often than not tell us nothing was wrong. Even though he only died a few days ago, the image of his hands is more powerful in my memory than even his face. His left hand, contracted from a stroke, long, elegant fingers clasped around his palm, tight, clammy. His right hand and it’s tremor, as he raised the cup to his mouth, determined to drink without help. The texture of his aged skin, my husband’s strong and smooth hands holding his father’s trembling ones, stroking them, relaxing the tightened muscles, unfurling and massaging his fingers one by one.
I often hear families being told that when they are sitting with a dying person -“keep talking…the hearing is often the last sense to go…they can hear you”. This may be comforting to some but in the absence of getting any reciprocal communication people might be left wondering whether this is in fact true – how would we know? Nobody has ever come back from the dead to say “I could still hear you, you know”. Talking to someone, while comforting, is a one-way process. Touch, however, even if there is no movement or signs of conscious recognition, is two-way by its very definition. In touching someone, one is touched. For Radman, the hands is an organ of the mind, a place in which there is a point of connection between a person’s internal world and the outside expression of their feelings. So touching a person’s hand becomes a bridge between inside and outside.
Human contact of skin on skin is a profound means of connection in the absence of words or sense. To touch someone else’s hand is the essence of intersubjectivity – in touching, one is touched. There is a reason that we often call emotions “feelings”, rather than “sightings” or “sounds”, and this is the inextricable connection that can be made through touch; the neuroscience of this is explored by David Linden in “Touch: the Science of Hand, Heart and Mind”. The further one is from a person in physical space (for example standing by a bedside, being on the end of a telephone, or writing an email) the more one has to rely on language as the primary method of communicating. To have an intersubjective experience with someone on an emotional level arguably requires that one is close enough to hold someone’s hand. In midwifery, skin-on-skin contact between a mother and her newborn baby is recognised in practice as centrally important for bonding, for health, for wellbeing. But in end-of-life care this contact is sometimes seen as a fluffy add-on, an optional extra that is a “nice” thing to do, alongside the more important pamidronate infusions, pressure relief and catheterisations. There is evidence suggesting that people tend to experience less touch as they age, and the times when they are touched by health professional tends to mostly be in the “instrumental” sense; that is, touching for a particular purpose such as having blood pressure monitored, physiotherapists assist in mobility, enemas, catheters, wound care and so on. The idea of therapeutic touch is not officially recognised as a part of bodily care work, and not captured in any care plans. The literature shows numerous references to therapeutic touch in care of dying children, but not so for older people. One study found that of 149 observed examples of touch between a nurse and older patients, 142 were instrumental, and only 7 were expressive.
For Levinas, touching someone’s hand is the most basic way of engaging in another person’s world: “one hand touches the other, the other hand touches the first; the hand, consequently, is touched and touches the touching – one hand touches the touching. A reflexive structure: it is as if space were touching itself through the man”. Hands have existed as potent symbols throughout history, in the artistic representations of cultures throughout the world and history.The hamsa, an image of an open hand that has been traced back to Mesopotamia, is a symbol of protection and of strengthening the weak. “Laying on” of hands is also a powerful religious symbol, for example in Christianity where it reflects anointing the sick or baptising the dying.
I would favour touching a person’s hands over talking, and this is based on no evidence whatsoever, just an intuition that I have. Listening to words requires enough attention and concentration to discern the meanings of the words. Touch requires less in the way of interpretation; a comforting touch is a comforting touch. And if this touch is accompanied by a familiar voice then it doesn’t really matter what the voice is saying, the essence is that the dying person is not alone.
Perhaps hands do epitomise person-centred care. Perhaps this is why the image of hands being held has become so commonplace in palliative care.