“Oh I’m scared of the middle place…between life and nowhere”
(Antony & The Jonsons, “Hope There’s Someone“)
A seminal study of people dying in hospitals (Glaser & Strauss 1965) observed that there appears to be a right “time for dying”, which is co-constructed between families and healthcare professionals. Family members and staff were heard to use statements like “she is hanging on”, “it was his time”, or “she is ready now”. Many of their observations about dying in hospitals rings true today. In the intervening half-century, medical advances have continued apace. We have developed individualised biotherapies which can target unique receptors and pathways in the cell cycle, interrupting the progression of malignant cancers indefinitely, hormone treatments that trick cancerous cells into senescence, and cardiovascular drugs that can regulate, strengthen and pace the ailing heart.
A consequence of this is that now, more than ever, it has become possible to fend off (the ultimately inevitable) death for longer and longer periods. But the idea of normal and pathological ageing is important to consider; for example, the older person who claims she is depressed and doesn’t want to be here any longer, who is bored with life, who longs for death to slip into her sleep every night, is considered almost heretical for daring to challenge the wonders of modernity that have enabled her pacemaker to be fitted and her blood to be thinned to the extent that she is granted a further decade, or two. Dying seems to become a choice; either for the patient, who “gives up”, “turns to the wall” or “loses their fight”, or for the physician, who suggests that further treatment would be “futile”, “not in her interests”, or “unethical”.
More recently, Sheila Kaufman undertook observational studies into how death and dying are understood by healthcare professionals, patients and families within a community hospital. Details were collected through informal and formal conversations and through observing everyday practice, and engaging with a wide variety of healthcare professionals, patients and family members. She presents a series of case studies that represent each patient “story” through the lens of a different person, so that each scenario is created as a series of contrasting, sometimes overlapping, and sometimes conflicting viewpoints.
When I got to this point in her paper I paused, to speculate about what she would have found; I imagined families begging for merciful ends to treatment, or conversely raging at medical decisions to withdraw life-prolonging interventions. I imagined the nurses pulled hither and thither as they attempt to advocate for patients and families whilst remaining faithful to best clinical practice. In one of the case studies she identifies a patient admitted with severe dehydration and weight loss, and describes the physician’s dilemma about comfort versus weight loss (her required morphine infusion was causing her to become so sleepy that she became more unable to eat or drink).
“Every time she loses something…it’s a little death” (Kaufman 2003, p6)
The idea of transitioning from living to dying implies that there is a point in time at which the switch is made; the patient is no longer “living with” a condition, but is now “dying from” it. But this is not what is seen in the real world. Every healthcare professional will be familiar with the pattern of successive episodes of improvement and deterioration, of renewed hope, of uncertainty punctuated by looming despair. In these spaces, there is no certainty. Particularly for those patients who have conditions where prognosis is difficult to estimate, such as dementia or heart failure, this protracted dance can continue for months or years. My father-in-law has had “end”-stage COPD for the past four years, experiencing multiple hospital admissions with acute exacerbations, each time bouncing back with surprising mental strength if not physical.
Dying is a liminal space, or as in the song lyrics quoted above (definitely one for my funeral list, by the way) the “middle place”. Interventions can prolong this liminal space; where the fact of dying is certain, but the time of dying is unknown, but they can never postpone the inevitable. For this reason, it is essential for physicians who are in the position of making such decisions to be aware of their own relationships with uncertainty, as it is doubtless that these will inform these kinds of decisions.
Judgements about quality of life are always there, however subtly, in a decision to commence, continue or withdraw a life-sustaining intervention. If the patient or their family is able to articulate what this means for them, all well and good, but how does one make a decision about quality of life in a semi-comatose patient, in one with cognitive impairment? As one of the relatives in Kaufman’s study said, “no one looks at it in terms of the risk of having to live a non-life versus the nose tube in, and maybe there’s a chance of improvement…” p12
Palliative care in its original conceptualisation sought neither to shorten nor to prolong life. Yet arguably patients receiving both generalist and specialist palliative care are experiencing both of these; for some patients the liminal space is prolonged with interventions such as corticosteroids, for others intractable symptoms are palliated with medications so strong that the person becomes too drowsy to eat or drink, but remains comfortable. The idea of allowing death to come at its natural time is unfortunately no longer a realistic option; both families and professionals will continue to be engaged in a tussle about the right thing to do. Navigating this uncertain terrain requires engagement by all with their own perspectives on uncertainty and unpredictability. Uncertainty, and all the emotions and thoughts that this evokes in the healthcare professional, is concentrated in this liminal space of dying.
The lack of certainty about when somebody begins to die has meant that particularly in the hospital environment there is no cultural space in which “dying” can occur. One is either being rescued, or having attempts at rescue withdrawn, leading to death but without a period of natural dying. Withdrawal of interventions that have previously been commenced to support failing body systems can mean that subsequent deterioration is more rapid than if the intervention had not been commenced in the first instance.
I am reminded of a patient I was once blessed to know, who had Motor Neurone Disease. He had experienced over ten months of so-called “non-invasive” ventilation in his home. The machine noisily reminded him with every forced package of air that his lungs hung uselessly, his intercostal muscles powerless to know when to contract and inhale. His speech was gone, just gasps that occasionally contained recognisable syllables. His wife and children watched, cared, supported, loved, day after day and week after week. The day arrived when he requested that the machine be removed so that he could die naturally; he asked for a day in between Christmas and New Year, so that he could spend Christmas with his family, but they could celebrate New Year out with friends. There was no way to predict the rapidity with which he would die once this ventilation was withdrawn; long discussions ensued, about when, who and how. The main point about raising this example here is to illustrate this idea of liminality. His dying was rapid, though we had no means of predicting this due to the length of time for which he had been ventilated. In fact, he died within a couple of hours, peaceful and calm, in the presence of his family. His dying time was faster than it would have been had the ventilation never been commenced, yet for his family and for him, the predictability of time and place meant that any potential distress about this was buffered.
The new Leadership Alliance’s “One Chance to Get it Right“, the response to the LCP investigation, was released in the middle of my writing this blog. It seems that it is talking precisely about this liminal space – this zone of uncertainty, and change, of hope and loss.
The report makes many important points which seem to draw together the very best of the End of Life Care Strategy, the work underpinning the LCP, and other initiatives such as Preferred Priorities for Care. It rightly focuses on collaboration and sensitive communication, and on the assessment of holistic needs at the end of life. It acknowledges complexity and uncertainty, and does not consider there to be sufficient evidence nor in fact any utility in attempting accurate prognostication and “diagnosis” of dying.
But alongside this, there are some unanswered questions. How, for example, can one demonstrate via inspections that the priorities of care are being met, particularly those relating to compassion? It is not just about identifying an individual’s explicitly expressed needs but about sensitive attunement to their unstated needs as well. Research by Ekman showed how suffering can either be expressed explicitly, by changes in facial expression such as frowning, crying or sadness, or can be ensured, as manifested by much more subtle signs that demonstrate that somebody is suppressing their feelings – this might be because they do not feel safe enough to articulate them, that they do not consider these needs to be relevant or important, or are in an environment where they do not feel that anything could be done about their suffering anyway – so “what is the point”?
Furthermore, as is often the case in such guidance, the rationale is indisputable, the need palpable, and the bulk of the work focuses on “what” needs doing, rather than “how” to do it. The section on implementation suggests that the lack of communication regarding dying is not to be tolerated and insists that clear communication is essential. I would imagine nobody would dispute this – but just as in the past where care has been seen to fail, there will continue to be situations in which communication remains substandard. The guidance is clear that “all staff who have contact with dying people must have the skills to do this effectively and compassionately”, and a few lines further, competence in compassionate care is mentioned. This naturally evolves in a recommendation for training and education, with mention of the excellent e-learning resource e-ELCA which I often direct students and staff towards.
However, there is a world of difference between a neat scenario or video-clip on a computer screen, and the experience of being confronted with ones own emotions, responses, fears and reactions when encountering the liminal spaces in clinical practice – is this person actually dying? Have I excluded everything that might be causing him to appear so? Am I influenced by my own perceptions about quality of life, about suffering, of the value of time over comfort?
The dying person is both of this world, and preparing to leave it. The healthcare professional witnesses this, and feels it, and cannot help but respond or react – sometimes consciously, sometimes unconsciously. Closing down or blocking conversations, resorting to tick-box care, failing to engage in distressing conversations with grieving relatives – these are all manifestations of a healthcare profession characterised by fear of dying and not simply of a lack of training in communication skills.
My hope is that any education and training that evolves as a result of this new guidance acknowledges liminality. Facilitating complex learning must focus not only on the external world of patients and families, but on the internal world of the healthcare professional. Compassionate care of the dying person relies not only on being able to recognise all forms of suffering in another human being, but on understanding how this can catalyse responses and reactions in the individual healthcare professional. To accept uncertainty in the liminal space of dying means being able to gently acknowledge doubt, hope and concerns, in a way that makes a frightened relative feel that they have a companion on their journey – even if this particular journey has no road map.