Imagine that you are dying. Magically, you are completely comfortable, at least physically, yet this is not your fantasy death. This is not how you want to die. Where are you? What is happening? Why, despite being physically comfortable, is this a death to be feared?
This exercise is the mirror image of the fantasy death exercise introduced in the Chapter two. When I do this educational exercise with clinicians, a heavy silence usually falls upon the group. No nervous laughter or jokes intrude. A soft voice says, "In an ICU, hooked up to tubes." "Alone," echoes another. "In a nursing home, tied down in bed." "In diapers." "In a dark room. Nobody else is there - no family, no friends."
Difficult as this exercise is, I hope that through it participants come to understand the importance of the psyche at the end of life; there is far more to palliative care than treating physical symptoms. Although physical symptoms can be very troublesome for dying patients, we are reasonably good at making such symptoms at least bearable. My impression is that far more suffering in patients with advanced illness results from psychic than from physical distress. I find such distress much more challenging to address. Speaking just for myself - of course I want to be comfortable physically, but what I fear is my death is isolation.
Our language fails us in trying to put into words the psychic distress to which we bear witness. Categories of psychic distress tend to be extrapolated from formal psychological diagnoses. We speak of depression, anxiety, and delirium, for example. Such categorizations can be helpful in suggesting certain therapeutic approaches and will be discussed in more detail. However, when discussing psychic distress in advanced illness in particular, I often get the uneasy feeling that our definitions and categories sometimes fall short, better serving our need to impose organization on the mysterious landscape of the mind than necessarily serving our ability to aid the dying and their families.
A particular conundrum is to determine what is normal and what is pathologic - what is a normal part of the dying process and what is illness. The situation is much clearer with physical symptoms. We work with the assumption that symptoms such as chronic pain, nausea, and dyspnea are not normal and should be eliminated if at all possible. It is much harder to say what is normal in encountering a person in tears. Is this a good cry, reflecting healthy grief and acceptance, or evidence of pathologic depression? Can grief be abnormal? I believe grief can be pathologic, but it is hard to say exactly where the line is that distinguishes the normal from the abnormal.
Beyond the normal-abnormal dichotomy, we tend to characterize episodes of distress as problems separate from the person. Depression, anxiety, and delirium, for example, are viewed as things that can be fixed or removed. Again, there is some usefulness to such classification. However, this approach may blind us to the fact that psychic distress is intimately intertwined with personhood. If we consider common fears associated with dying, we find themes that do not so easily fit into neat diagnostic boxes. What is it people fear in their dying? Being alone? Separation and isolation? Not being in control? Living or having lived a life without meaning? These and related questions arise from the person and defy disease-oriented classification.
In the fantasy death exercise above, people tend to talk easily about where they do not want to be when they die - the ICU, a nursing home, and similar places. It may be difficult to acknowledge that these places (at least at a fantasy level) are also projections of internal fears that reflect threats to self as much as undesirable external circumstances. Other than the wrenching agony of acute loss, the greatest suffering I have witnessed in dying people and their families relates to perceived loss of control and isolation. This is admittedly a gross generalization and probably reflects our American culture's obsession with being in control. I cannot say how unique this is to our corner of the world. I suspect that at some basic level, not being able to live as one would like is a fairly universal form of suffering. To the extent this is true, why do we see so little discussion of this in palliative care education? I have reviewed many curricula for end-of-life care. Almost all contain something on depression and delirium but very little on the subjects of control and isolation per se. Why? My guess is that it has something to do with the fact that we do not categorize isolation or a "need to be in control" as illnesses. If we recognize suffering that appears to result from frustration in not being in control, we tend to see the issue as one of unavoidable external circumstances interacting with a relatively fixed personality. To the extent that we can modify the environment or the person's ability to interact with the environment, control can be enhanced and distress relieved. This can, in fact, be a very useful approach to such distress, but it is inherently limited by our ability to alter the environment or the person's ability to interact with the environment.
At deeper levels it may be difficult for palliative care clinicians to acknowledge that certain forms of psychic distress and suffering are beyond our control as clinicians. We like to be able to be fix things. We can treat certain manifestations of suffering such as anxiety and depression with a pill, but we may not get to the heart of the matter, because that "heart" is part of the person. This does not mean that we do nothing and can be of no assistance. However, it is a mistake to see such suffering as something separate from the person that is our job to fix or cure. To the extent we can support people in dealing with their suffering, relief can be found. Some forms of healing for suffering are to be found only within the person.
In keeping with the story theme of this book, how can we understand such distress? People have an understanding of how they got where they are at any given time. This understanding is part of their story, which projects into the future along a particular story line in a semicoherent manner. Thus, a person who sees his or her role in the story as a "fighter" will project this role into the future, even when there is a significant "turn in the plot," as often happens with illness.1 This is one way of coping with an unexpected turn of events - we fall back on our strengths. However, at times people encounter plot changes that are so extreme that they appear to negate the very premises upon which their life stories have been built. The rugged individualist who prided himself on being able to handle any problem finds himself completely unprepared for life following a stroke. A mother of great religious faith looses a child, a loss that seems completely unfair and contrary to her belief in a just God. The daughter who swore she would never put her father in a nursing home finds she has no other recourse. In the aftermath she experiences crushing guilt.
The story lines of the rugged individualist, the person of faith, and the loyal daughter all contain admirable qualities and probably served these individuals well, but they may be inadequate, in and of themselves, to enable the protagonists to respond positively to new and unanticipated challenges that may arise associated with serious illness and death. People in such circumstances face crises in their story lines.
What are our roles as clinicians in all this? The truth is, we will find many people who will suffer mightily despite our best efforts. If we judge ourselves based on whether we can eliminate all suffering, we make the same mistake clinicians make when they judge death to be a failure because they could not cure everything. To the extent that a patient's or family member's distress arises from his or her story line, we must first approach this distress with respect. To negate the story line is tantamount to negating the person. If somebody really wants to die "with his boots on" or "rage, rage, against the dying of the light," I guess that is OK. At least he got to do it "his way" as Frank Sinatra crooned. I may be saddened by what I see, even think some of it foolish. However, I also feel I must struggle to respect that these are their stories, not mine. At times we will have special opportunities to suggest different approaches that may result in less distress and yet be acceptable within that person's story line. Rugged individualism may be reinterpreted as a strong spirit overcoming great obstacles such as increasing dependence. The care received in dependence may come to be understood as "getting one's due" after a life well-lived rather than as an assault on dignity.
Although I am warning against a rigid categorization of psychic distress, categories do help us understand certain patterns of distress and suggest certain approaches to the relief of suffering. I now consider some of these traditional categories.
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Palliative Care Perspectives
James L. Hallenbeck, M.D.
Copyright © 2003 by Oxford University Press, Inc.
The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.