What dreams may come after death frightened Hamlet to paralysis. Contemplating suicide, he explores realities far worse than death: a perpetual nightmare of greater terror than any in waking life
To die, to sleep;
|To sleep: perchance to dream: ay, there’s the rub;|
|For in that sleep of death what dreams may come|
|When we have shuffled off this mortal coil,|
|Must give us pause.|
In the context of Physician Assisted Suicide (PAS) and euthanasia, a perpetual nightmare of decisions and revisions (which a minute will reverse) should give us pause to reflect on what physicians do for patients, what patients ask of physicians, and why both do either. Despite the shift in values from what doctors do 'to' patients to what they do 'for' them, doctors nonetheless must consider that whatever they seek to do for patients, they often achieve this end by doing something 'to' them. The issue generates passions on either side, and the language we use points to the ground on which we stand: shall we continue to say PAS, or shall we say, perhaps more neutrally, Physician assisted Dying, or Physician aid in Dying?
As I sit through the many presentations here at the 2016 Annual Assembly of the American Academy of Hospice and Palliative Medicine and the Hospice & Palliative Nurses Association, I encounter choices considered and made, protocols considered and implemented (or not), discussions of collaborations and near-misses, issues of living and dying, and the intersection of medicine and death. As a physician-member of the Hospice and Palliative Medicine community, I share in a commitment to life, to life at the end of life, and in the perceived threat to that commitment by the process of legitimation of PAS. Certainly the formal venue the AAHPM provided for critical reflection on the matter was charged with tension and uncertainty, as genuine division played out, even if in a field of collegiality and palpable mutual respect.
What shall we do when our patients choose death and ask us for our help in achieving that goal? The choice for death in the face of illness is at once an expression of sovereignty and an expression of valediction. Yet, how are we of the good death, the death with dignity, death and dying with compassion and comfort, to participate in the circumvention of the platform of our commitments?
Perhaps no case compels us more to consider the complexity of such matters than patients who suffer from neurodegenerative diseases, diseases where the 'body' disintegrates in the presence of a sound mind; the paradigm for such illness is amyotrophic lateral sclerosis (ALS), more familiarly known as "Lou Gehrig's Disease." In ALS, all the kinesthesias of the lived body cease; the body itself becomes the field of medical mayhem, from infection, tissue break-down and even multi-system failure. All the abandonments of the body confront a vibrancy of the mind.
Surely PAS, if it is to achieve full legitimation and broad reception throughout all cultures and sub-cultures, will achieve it in the context of the management of the end of life of those suffering in the provocative and poignant example of ALS. What compassionate spirit would not empathize with the unspeakable horror of awareness beyond the reach any instrumentality, beyond the kinesthesia of the lived body? Who but we providers of compassionate care can conjure an ear to hear the screeching silent scream of a vibrant mind howling 'hold enough'?
Moreover, that mind might present its concern to us in a full-blown personhood, well in advance of end-stage disease, in the form of a thoughtful consideration of its request for death couched in a sense of dignity and authentic values. Such values might privilege instrumentality in the hierarchy of the elements of personhood, and the human person before us might present a structure of autonomy and dignity that crumbles in light of foreseeable, total custodial care. The sheer desire of control over one's own lived life, or a desire to avoid becoming a burden to loved ones, or even to 'society' could buttress the sanest of arguments for such an exercise of personal liberty. All sympathy and empathy aligns with this projected view upon suffering, and instinctively understands the horror of being unable to influence one's world. To be clear, that deafening screech grates most profoundly in the context of a change of heart, a change from one decision, to hold the course of palliation, to another decision, where, once unable to communicate, another change of heart occurs, to abandon the palliative course and choose the pursuit of death.
Yet, something is incomplete here; things are less than resoundingly clear. The judgment that comes into view denies the possibility of an inner life within a body dying from ALS. When an attitude of the understandability of a locked-in vibrant mind detached from the body collapses, or becomes bracketed, and the inner life of the mind, spirit and the flesh appears, another encounter sets the stage for experience. The vibrancy of mind surviving the devastation of the body might very well embrace a life of sight and sound, a life filled with music, visual arts, film, and sights and sounds, such as those of the voices and visages of loved ones, family and professional care-givers. Such values and possibilities haunt the natural attitude of the righteousness of asserting autonomy and even extreme expressions of freedom. The natural history of diseases like ALS does not occlude death, but neither does it occlude another version of quality of life that privileges the life of the mind and spirit.
Admittedly, the example of ALS has its limitations in grounding the suffering at the end of life, and is does not reflect the more immediate injury to the body that end-stage cancer does, or as heart failure or lung disease might do with their relentless dyspnea, anxiety, intense fatigue and asthenia. Yet, diseases like ALS can give a leading clue to what its sufferers think of it as they think of it in the flesh, in the self, in the spirit and in personhood that all may be operative in the experience of other terminal illnesses. Though there might be many other points of departure here, two come to mind, and they come to bear on how one's own life is experienced in one's lived life. On the one hand, life can be thrust upon someone: I find myself thrown, without any say, power or will, into 'life' as a random event in absolute contingency. What I have not chosen I do not receive. On the other hand, my flesh gives my very self to myself, where life is given as a gift, which I do receive as a receiving self, a self 'gifted' with life. When I see myself as a random event, I have no given that brings my flesh to give a self to myself, and I can reciprocate the randomness of my facticity by rejecting life. When I am the recipient of life as a gift, I receive as the 'gifted' a gift outside any economy of exchange; I cannot return the gift. There are no givebacks when the given moves my flesh to give my self to myself.
As providers of compassionate care for patients with life-limiting and life threatening illness, we should remain open to a version of life that values life despite the loss of the body. Furthermore, as professionals treating patients whose lives are such that the stakes are so very high, we should explore, if not challenge the value systems of our patients whose suffering, or anticipated suffering, brings them to ask for death. The hospice movement and community embraces life, especially life at the end of life, and we should adopt an acutely analytical attitude when exploring the demand for death as an exercise of freedom in choosing how and when one dies. Such a critical approach cannot be limited to ruling out clinical depression, or adjustment disorder, or characterizing the various coping mechanisms that mitigate the onslaught of loss, devastation and suffering.
If our patients do indeed convince us of their judicious approach to their own autonomy, of their own critical process of evaluating their own personhood and freedom, and that their request for death is rational in their own system of judgment, then our response must, of course, be compassionate understanding and unwavering support. Still, as professionals in a discipline dedicated to the alleviation of the symptoms of suffering, we cannot choose to provide the means of death. We cannot remain true to our commitments to life at the end of life, and directly cause the end of life.
Respectful dialogue among physicians and patients in which all judgment is suspended and communication is radically free can lead to greater understanding of the issue of requesting death near the end of life. There must be a place between 'abandonment' and acquiescence in the relationship between a physician and her patient. All the legalizations and decriminalizations of physicians' acts upon their patients do not exonerate either party from their responsibility in their acts and interactions. The instant the phenomenality of the request for death enters upon the stage of medicine, we must already have seen it on the horizon. What shall we at the intersection of two selves do?