"Where was it?" said he to himself. "Where was it that I read of a condemned man who, at the hour of death, says or thinks that if the alternative were offered to him of existing somewhere, on a height of rock or some narrow elevation, where only his two feet could stand, and round him the ocean, perpetual gloom, perpetual solitude, perpetual storm, to remain there standing on a yard of surface for a lifetime, a thousand years eternity! - rather would he live thus than die at once. Only live, live, live! No matter how, only live!" - Raskolnikoff in Dostoevsky's Crime and Punishment
This particular passage in the novel 'Crime and Punishment' captures perfectly that very chilling fear of death, and perhaps our instinctive yearning to defeat its inevitability by whatever means possible. What must it be like to know that time may be short, that death is close and to live with this notion day-in, day-out?
Wherever you work in healthcare, you are most likely to have the privilege of meeting people who have severe, life-threatening illness and where there is illness there is also looming death. It may sound obvious, but it is perhaps a sign of our sometimes death-denying society that even those with advanced cancer sometimes haven't contemplated the possibility of dying. When they do, the realization of the possibility of death hits many people very hard.
In my specialty of palliative care, we work to try and address a lot of the symptoms (for example pain, nausea, breathlessness) people get when their illness advances. But we would not be doing our jobs well if we merely focused on physical symptoms. There is an idiosyncratic human being here, and not uncommonly a whole host of other people surrounding them; they are of course frightened and have a lot of questions. "How long have I got left to live, Doc?". Healthcare professionals have to address this very common and reasonable question daily. Rarely is it phrased that clearly or said in quite that straightforward a way, and unpicking what someone is really asking requires skill and time.
For many reasons it is a difficult question to answer. Every illness is different, although it may be called by the same name. Every individual varies in myriad ways, some may have advanced cancer in their abdomen, but their heart and lungs remain very strong. Every treatment has the potential to have a different response. Add in the newspapers that will inform of a new miracle cure on their front pages about once a week and you have more questions; and sometimes dashed hopes. The truth is that no one really knows the right answer, no one is perfect at predicting the outcomes of a terminal illness other than to say that it is likely to lead to death at some point in time. If I personally were to find myself in a similar situation, as a patient or as a carer, I would ask exactly the same searching questions of the professional I was seeing. It is a natural thing to want to know and sometimes helplessness is followed by information gathering as part of a surge into action in the light of such bad news.
I find that it is not uncommon to discover that there is another, underlying question to the one above.
Often the real question is "Are you someone who will listen to me and who will be frank and honest about what lies ahead - when I am ready?". And also: "What are the last 48 hours of life like, typically, in other people? Are they awake or asleep?"
How important this supportive communication is, was highlighted by a nurse who was dying of breast cancer. Days before her death she wrote: "There are so many questions, concerns and problems to face in the lightening ball mirror. To overcome the sense of powerlessness the traveler runs through a maze seeking someone who might actually listen to their pleas for help, someone who actually knows that the traveller is there." (Bushkin E. 'Signposts of survivorship' Oncol. Nurs Forum, 22(3), 537-43 1995).
Death is a certainty and we know it is inevitable. But some events in life bring it into much closer focus. The death of a friend or loved one, for instance, can highlight the fragility of life. Sometimes the death of a much-loved celebrity gets us thinking. Health professionals can rely on the latest scans and blood tests to get a little step closer to what is happening within someone's body at a given moment in time. Add to that some intuition, as well as past experience with similar pathologies and we might hazard a guess. Weeks, perhaps, days, not months? We are often inaccurate in our predictions, as research has shown. But what we can do is listen, discuss and maybe help the person to achieve what is important to them in whatever time they have left.
I try to explore what people are most frightened of: dying or death itself. The process of dying is for some the most distressing thought. Will there be suffering, pain, agitation, breathlessness? Then there is the perceived loss of control in those final hours or days. For a few, even the final years seem unbearable, knowing that the illness will catch up with them eventually. How futile an existence that must end soon! Then there are those with the overwhelming fear of death itself as a construct, that sheer panic when someone realizes that their essence, their being, their self will at one point no longer be there. Void? Nothingness? What? Yet again these are issues that need to be explored in the context of an individual and the people closest to those in this terrifying situation. And talking about it openly helps.
Bob Dylan said "Those not busy being born are busy dying." This wisdom in part depends on your outlook on life. In palliative care, we meet a broad spectrum of people who know they will die at some point in the not too distant future. Of course, they all have different outlooks and personalities. Some spend the last days/weeks/months/years of their lives focusing on living, some on dying. Most do a little bit of both. What makes me most happy is to see those people who know they are 'living with dying', lapse into moments of fulfillment and contentedness; to this effect we try to help with these wishes, if we can. It is the little things that make a difference in life, however challenging it may seem. Pain-free time with loved ones, enjoying a meal without feeling nauseated, organizing a trip or even just going back to the local pub for a drink or two are some examples of what we can try to achieve. Hopefully this collaborative approach means that less of us will feel like Dostoevsky's afore-mentioned condemned man on his rock, but can prepare for death, with support, comfort and knowledge about what may happen, by living, not dying to the end.
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