Perchance to Dream What Dreams May Come: Day-Dreaming About Physician Assisted Suicide at the 2016 AAHPM Annual Assembly

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.

                                            (Hamlet III, i)

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?

The Givenness of Death

Death comes.


Hospices across the universe manage death and dying, often without the slightest idea of death as it is in itself. As a specialist in hospice and palliative medicine, I am often part of a team dedicated to death, or more accurately, to the looks of death when it is happening. When death is happening, a human being is dying, which is the process through which a living being exits life,  a life lived in a world of living and non-living things. The living and the dead. The dead are things formerly living, having gone through the process of an exit from life. The hospice team specializes in the death of a human subject; there is no palliation for fishes and trees. Every living thing dies (despite the odd and remarkable life cycle of turritopsis dohrnii); but we only manage the death of humans---it is the human thing to do.


We pronounce death. We declare that a human has died and has exited life. We even speak of the 'remains,' a thing left behind,  such as after a departure. A presence is exchanged for an absence. The official declaration is a matter of ownership and the public health. We protect the living from the dead. We protect the dead from accidental life by embalming or cremation, lest life creep back in, a very rare occurrence. Such is the final act in the management of the dead. The dead really must stay dead. It is the human thing to do.


Dying is the human thing to do. We all do it. Death is manner of the human condition. It is also the least examined thing we do. Thanatology does not begin to touch death; not even in its most morbid observations (turritopsis, not thanatopsis). When does death make an appearance: how does the phenomenality of death enter experience as it is in itself? Neither Addie Bundren nor Agamemnon get to report back to base camp, and the tales they do tell are for the lips of the living, the logoi of the dead; which is not to say they do not speak---they are given their lines.


As our patients lay dying, we minister to lives woven into the death-in-coming. Death presents itself to the life it entangles, and to those eyes that dare to manage it. Just what or who is managing what or whom? This death at a distance is the very hermeneutics of death, if we dare to experience its givenness. This hermeneutics of death is the space between the living and the dead, the call of death in its givenness to the one who would read its hieroglyphics. Even when we paint over dying with morphine and other opacities, death shines through in its phenomenality and givenness. We can know of the givenness of death by the response to its call. As the ones who want to know, we know death in its insistence to be heard, its command to interrogate it, through the hermeneutic that cuts a gap between we who would know and a death who would speak.


The symptom is death in its lowest degree of givenness. To understand it as a metaphor is to already read it, and misread it at that. The symptom is not a mode of similarity. Death's symptoms are extensions of itself; their reach is metonymy, and they foreclose on death's wholeness. We tend to know death by its parts. The 'death rattle,' the coalescence of secretions in a throat betraying the personhood of the dying, chills its hearer. For some, the sound is the very voice of death, gripping a loved one by the throat. By the time this symptom makes its appearance, the dying are oblivious, so it is a gift only for the hearer. It is a symptom more often treated to 'treat' a family member, than to alleviate suffering in the dying. The secret is to dry the secretions and quiet the sound of death, denying it embodiment. Another symptom, 'air hunger' or dyspnea, is horrific for the dying and their witnesses. Morphine blankets air hunger, subdues it, gives it rest; the body relaxes as this finger of death loosens it grip on everyone in the room.  We add to the massive presence of death in every intervention; we give death a shape and a rhythm, and make its invisibility visible, if only in outline.


Our own presence to death invests it with meaning, the meaning it calls to us as it beckons us to display its self. This the moment of two selves: reading and being read, interpreting and being interpreted. We so want to abbreviate death, we would close it off with a signature on a death certificate. But if we want to know death, we must allow it to appear, to makes its presence known to our own presence. What is in the room when the last breath, the last beat of a broken heart, has had its say? I am in the presence of death, now without a symptom, without a metonym to make it all a bit more palatable. I am present to death as death. What is becoming visible? Death is an idol created by my gaze upon the invisible. Death is in life's place, a complete transubstantiation symbolized in the lifeless body before me: the accidents of the flesh, which give death its metaphor.


Death does not mean the absence of life. Death, in its pure givenness, means the change in substance. That is the difference to which I bring my own presence. Death wants to present itself in its whole givenness, which we are wont to foreshorten through its metonymy, our very desire to keep it at arms length. But we do not let death appear through the perspective of foreshortening, which distorts it to fit it into a frame, our picture of death. To be with death is to stand in death, the space in the room that wants to mean as it wraps its cellophane self around my presence and the lifelessness before me. Death embraces the living and the dead with its difference that builds its cathedral to house a sacred space.




Death sacralizes all things and erases every profanation in the event that is death. Death is the difference that cuts a gap in the space of my hermeneutic attitude  that give it a voice in which to whisper its call. This eventive gap cuts into the lack that reshapes my reader's self, now something also different, and new.  This death is the event of my own death as a movement from the profane to the sacred. It is the same death that I will die. The wholeness of death is in the difference it makes for everyone. It is the same difference. I know death because I am as human as the dying and dead before me. Death appears before me as I appear before death. I do not sign so fast: I sign for myself when I sign for the dead. I tarry, for I do not certify death; I ratify it with the signature that I use to sign off on what we all do.

Toward a Philosophy of Being at the Bedside of the Living and the Dying

And now for something completely different...perhaps...


I have been giving consideration lately to the conceptual framework of therapeutics, a philosophy of therapeutics, which I don't think necessarily equates to what passes for philosophy of medicine. The philosophy of medicine seems to me more of a game, a nodding of philosophy and medicine to one another, an exchange of a knowing smile. I am loathe to jump into the naturalism/normativism, objectivism/constructivism (these pairs are, for the most part, synonymous) debates right now,  though I acknowledge the value in these 'discussions,' so long as they don't get too dogmatic.

So, my ophthalmologist (yes, doctors do see other doctors, though we deep down don't trust doctors) told me recently that my eyes are normal and healthy, as he was writing down my diagnosis of 'cataracts.' I laughed at this, and his response was telling and refreshing: cataracts are like your gray hairs: are they not normal and is your hair not healthy? Your vision is fine and your hair looks good. This is living a life. Or words to that effect...

Apparently, my diagnosis described something other than disease. I imagine if I couldn't drive at night because of oppressive glare and visual compromise, I'd have been invited to the operating room to remove those cataracts. Treatment depends on 'what's going on,' and diagnosis is a statement of 'what is.'

If anyone has high blood pressure she pretty much carries diagnoses of Stage A heart failure and and Stage I chronic kidney disease (please, no one panic; I don't--and I have high blood pressure, too). Often, treatment is an interpretive gesture, and its nature depends on the meaning of 'what is.' Meaning often gets its punch from context, and not all diagnoses mean the same thing. A diagnosis of cancer, for example, identifies a potentially lethal process that requires treatment. Many of us don't want to be told we're normal and healthy with a diagnosis of cancer, nor would we expect non-urgency to inform treatment; unless, of course, context doesn't punch so hard. I don't know who would want their prostate or breast cancer treated with harsh, often intolerable therapies if such a person were 96 years old, with dementia and frail. 

Sometimes value systems enter the fray. The presence of a diagnosis, even an objectively ominous diagnosis, does not necessarily demand an aggressively toxic course of therapeutic action. The meaning of the diagnosis must align with the meaning of treatment in a rational approach to therapeutics, and therapeutic action is as much determined by diagnosis as it is by the values that determine quality of life.

Deconstructing normativism does not lead to naturalism, nor is the converse the case. Deconstruction leads to freedom and assertions of meaning, and lives on the bar between what I am calling objectivism and constructionism, here;  and between what we call disease and health. Such deconstruction leads to discovery of what events are taking place in diagnosis, what is going on when doctors treat, and what is going on when patients present for 'treatments' for 'what is', even when 'what is' is neither a diagnosis nor a disease.

Although such treatments could be part of 'esthetic medicine'--medical/surgical procedures that treat the perception that one is getting older, wrinklier, and less attractive, I am thinking more of the treatment of symptoms regardless of the underlying diagnosis. Bracketing off whether or not medicine should be in the business of beautification, I consider what is happening, for example, at the end of life, when aggressive, disease-focused therapy is irrelevant, in which risk outweighs any benefit. Such symptom-driven, non-curative, palliative treatments enhance quality of life by reducing suffering caused by troubling and disabling symptoms such as pain, or shortness of breath; they might also lessen anxiety caused by such symptoms and impending death. Such treatments rarely manipulate the causes (primary causes) of suffering though of course they can ameliorate final causes.

Sometimes diagnoses are not descriptive of malfunction of statistically determined normal processes. Sometimes they just state 'what is,' what the symptom is: pain, confusion, shortness of breath, and the existential suffering of the impending loss of life. What is natural or normative, what meets criteria for objectivism or constructionism, becomes secondary if not obscene at the bedside of the dying. Opening the therapeutic relationship to the event, to healing, matters more than formalization of concepts. The event can lead to more living among both the living and the dying.

Sympathy, Empathy and Being-for-Others

As a palliative medicine specialist, I am often asked to comment on the human qualities of sympathy and empathy. In particular, the question is often how can we ‘teach’ those charged with caring for the seriously ill and dying to be more sympathetic, empathetic, or at least how to have these workers seem to be sympathetic, empathetic. There is the potential for great benefits here, benefits for all, especially if we work from a system in which we are most truly who we are as humans when we are being for the ‘other.’

 

First, I should define my terms: by sympathy I mean that human quality that enables us to participate compassionately in the feelings or suffering of another, to allow those feelings and suffering to resonate within and  between ourselves and the other person; by empathy, I mean that rather extraordinary human quality that enables us to experience the feelings or suffering of another. I do not wish to commit psychology here, but these terms cannot be synonymous, even though they both involve compassion and the ability to form a response to the suffering of ‘the other’. Further, making distinctions among the types of sympathy and empathy (e.g., affective and cognitive empathy), or discussing psycho-pathologies that eradicate the capacity for sympathy and empathy, are tasks for another place and time.

 

All human beings who are psychologically and spiritually intact are capable of sympathy and empathy, and these qualities are likely hard-wired into humanness itself. Still, unsympathetic and un-empathetic behaviors often come into play, and in clinical situations, can be detrimental to the well-being of patients, their families and co-workers. Certainly, when such behaviors occur during the care of the gravely ill and dying, the stakes are even higher, as time tends to subvert recovery. These behaviors often result from misapprehending the situation, poor prioritization of needs, and a shift away from the other to the self. Workers who display such behaviors are not psychologically ill or otherwise pathological, but often preoccupied with a distorted hierarchy of needs.

 

Apart from educating professional and family care-givers caring for the seriously ill and dying (hospice patients, for example) in a patient-centered value system, and prioritizing the needs of the sufferer other over and against the needs of a beleaguered worker who simply has to get to the next patient, what else can be done to bring such caregivers in touch with their innate capabilities to sympathize and empathize?

 

Permit me to borrow a concept from early Christian literature: kenosis. From the Christological hymn in Philippians 2, the concept is one of self-emptying; moreover, it is a directed self-emptying, an emptying whose purpose is to take on another nature. A brief consideration of the text would be helpful:

 

Do nothing out of selfish ambition or vain conceit. Rather, in humility value others above yourselves,  not looking to your own interests but each of you to the interests of the others. In your relationships with one another, have the same mindset as Christ Jesus:

Who, being in very nature God,
did not consider equality with God something to be used to his own advantage;
rather, he made himself nothing
by taking the very nature of a servant,
being made in human likeness. [NIV, Phl 2:3-8]

 

The phrase, ‘made himself nothing by taking the very nature of a servant’ captures the concept of kenosis nicely. Theologically, of course, the passage cannot be read as an exchange of the divine for the human, but rather as a divine accommodation of another nature. The Christological and soteriological richness notwithstanding, the process of kenosis can be utilized, at least metaphorically, to bring people in touch with their own capacity for sympathy and empathy.

So, then, can sympathy, empathy and compassion be taught? Perhaps: to the extent that a caregiver can participate in the metaphor of kenosis, he can conceptualize his own self-emptying to allow room for the participation in the feelings, emotions and suffering of the ‘other;’ more specifically, to make room for those feelings of the ‘other’ within himself. Through this confrontation with the suffering of the other within himself, an appropriate response can be formulated and expressed as a sympathetic/empathetic gesture or word. Thought of in this way, sympathy and empathy can be related by degree, or on a continuum, rather than by essence: the greater the emptying, the likelier it becomes to move from compassionate participation and well-wishing to actual experience of and responding to the suffering in the ‘other’. In this way, the move from sympathy to empathy is less paradigmatic, and more syntagmatic, less a change of scene, and more an extended viewing along the horizon. This process is of course easier to state than implement, but considering the task before caregivers and the needs of the seriously ill and dying, the process is well-worth the attempt.

 Coda: For non-religious caregivers, no theological point need be made, but rather a participation in the celebration of the wonder and beauty of being human. For religious caregivers, and perhaps especially for Christian caregivers, the theological, Christological and soteriological depths of this kind of imitatio Christi can be fulfilling beyond the joy of humanism. Indeed, self-actualization, emotional and spiritual growth, and participation in individual and collective humanity are merely the surfaces of being ourselves and being true to ourselves by being for others.