Confined to his hospital bed and recovering from pneumonia, my father the Professor complained about his legs while the nurse and I repositioned him. We tried to get more information from him. I asked him to describe the pain.

“It feels like…like being alive,” he said and smiled at me. 

 “Does it feel good to be alive?”

 “You betcha! It sure beats the alternative.” He laughed. 

That was 2018, shortly before Christmas. The Professor had struggled in a nursing home with dementia for over a year, bound in a chemical straightjacket that muddied his already impaired cognition and diminished his physical abilities. Dementia frayed his perceptions of time and affected his memory. The best we could do was try to gauge his wishes “in the moment.” Moments, for him, were not sequentially connected like a string of pearls representing linear time; rather the pearls were scattered randomly in the sand. One moment he was aware he was in hospital; in an instant, he was transported to the university, practicing philosophy or teaching. Though the disease frequently erased memories of his relationships and family, he never lost his strong sense of identity as a philosopher. 

 “I just wrote two papers this morning, can you get them? They’re to the right of the computer on my desk over there.”

There was no desk in the hospital room, and the Professor could barely sign his name, let alone write a paper. He had been retired for over 16 years, yet his memory of work was strong. He was still teaching and writing. 

“What are the papers about?” my mother asked while she feigned a search. 

“One is on Wittgenstein, the other is on Ryle. Could you bring me a computer? There’s one I’ve been working on in my head on Maritain, and I want to get it down on paper.”

He had clear memories of his fully functioning, thriving philosophical self, occasionally displaying awareness that this was no longer his circumstance. My mother and I presumed the subject of his phantom papers connected to this circumstance, though he could not articulate their nature. 

We wondered, why did he focus on Wittgenstein, Ryle and Maritain? Certainly, they influenced a handful of contemporary phenomenologists who discuss dementia, and who insist that people with severe cognitive impairment experience a special kind of lifeworld. They strongly oppose Cartesian dualism’s infamous claim “I think, therefore I am.” For these phenomenologists, thinking does not equal Being. Rather, experience, mood, and self are neither located in inside or outside the self, but arise out of interaction with the world – Heidegger coined the term Being-in-the-world to describe it. This is where Maritain's account of the act of existing might have been the idea that the Professor’s tattered memory latched onto. 

The triptych of phantom papers was rounded out by Wittgenstein and Ryle. For a fleeting moment or longer, the Professor may have recalled Wittgenstein’s account of the “conjuring trick,” an undesirable philosophical move he associated with Cartesian dualism that Wittgenstein so vehemently opposed. Phenomenologists use Wittgenstein’s conjuring trick to challenge advance directives for people with dementia: as a person’s mode of Being-in-the-world shifts with age or disease, prior directives may not reflect current wishes. Likewise, Ryle famously critiqued Cartesian dualism as a colossal category mistake he called the dogma of the ghost in the machine. Instead, Ryle viewed the body and mind as a field of causes-and-effects that moved in a manner that is the opposite of clockwork. Was the Professor offering his personal insight into his own altered mode of Being-in-the-world? 

If the Professor’s preoccupation in the phantom papers was with language, he may have been contemplating Wittgenstein’s language games.  When language fails to do its ordinary work, confusions arise. He may have been trying to signal his awareness of the language games occurring around him. Perhaps he was alluding to a recollection of Ryle’s cartographic analogy: speakers of language are to a philosopher what villagers are to a mapmaker. Villagers have a competent but subjective grasp of the world around them, but struggle to interpret a mapmaker’s presentation. Philosophers, Ryle reasoned, are cartographers of language.  Did the Professor view himself as a villager, or a cartographer? Was he implying a desire for us to analyze implication threads in his utterances and convey them to others?

Or perhaps he recalled Wittgenstein’s ruminations on pain, illness, and being human. Late in his life, Wittgenstein had a good deal to say about disease and suffering. He viewed the human response to witnessing another’s pain as a primitive reaction that demanded moral action. In his later work, he emphasized, “to see that another is in pain is not, first and foremost, to record some special ghostly or behavioral fact…seeing that another suffers is more like recognizing that (ceteris paribus) something ought to be done.” Was the Professor alluding to Wittgenstein’s moral imperative that those who witness his own difficulties must act? 

***

In early 2015, I grieved the loss of my father prematurely. The clouds of dementia gathered, largely un-noticed, over a period of years. For decades, everyone operated under the paradigm that the Professor possessed superior cognitive ability, and this was true for many years. Anomalies began to crop up in the early 2000s. While he sought advice for memory problems, the assurances of numerous doctors that everything was fine gave him – all of us – a false sense of security. 

Upon the sudden death of his only son, he plummeted to the depths of dementia quite literally overnight. Death was irrelevant to my sense of loss, to my grief. He was still alive, but I ached for the parts of him that vanished. He was a still a philosopher, though I barely recognized him as the father I knew. On his better days, he spoke at length about Henri Bergsen’s Time and Free Will. More often than not, he wasn’t certain who I was, how many children he had (if any), nor who they were. Over time, I became accustomed to his newer, alternate mode of Being-in-the-world. I recognized that my father was not gone, but changed. Phenomenologists have called this the fraying of the Self. His new mode of Being-in-the-world involved sentience, thought, and emotion as much as physicality; though his intellect and memory had radically diminished. 

As time passed, he was “the Professor” more often than “Papa” or “Pop.” I suppose that transformation reflected the evolution of our interactions as they transitioned to professorial and philosophical, perhaps because he no longer recognized me as his daughter. 

***

In 2017, my mother made the difficult decision to move the Professor to a nursing home. It was less than ideal, but his needs were far too great to keep him safe at home. At that time, his disposition was mostly pleasant– he constantly asked questions, and so long as somebody answered them to re-orient his sense of being, he seemed content.

In the nursing home, he experienced good days with moments of contentment, and bad days that caused immense frustration. His physical capabilities deteriorated. Euthanasia was proposed a way to end my father’s suffering (as it was perceived by healthcare workers) twice over the course of six months by two different physicians. Put him out of his misery, the doctors implied without much subtlety, die with dignity. But to what degree was he suffering? Undignified? What did he really want?

***

The Professor’s first brush with euthanasia occurred after living in the nursing home for some months. He returned from an emergency blood transfusion at the hospital for an undetermined cause. New behaviours surfaced: agitation, and bouts of aggression. To tame his agitation, the on-site physician, Dr. Sheehan, prescribed 5mg Haldol (haloperidol), a high-potency antipsychotic medication commonly administered to patients with dementia for its sedating properties, three to four times a day. Initial dosing of Haldol usually begins at 0.25mg; anything in excess of 2mg is considered high. This was in addition to cannabis oil and benzodiazepines. The doctor discontinued daily Seroquel (quetiapine), a less-potent psychotropic used to keep nursing home residents placid. The combined effect of the new chemical straightjacket was profound sedation. Through his conduit, Clinical Care Coordinator Aaron, Dr. Sheehan warned us that the pharmacological cocktail made him a “fall risk.” As is typical among dementia patients, the Professor had no idea of his limitations, and had a high drive to ambulate, oblivious to his need for a wheelchair. 

My mother and I expected that he would be supervised accordingly in light of the warning. That was not so, and soon he sustained his first presumed fall. The workers “found him like that,” large bruises and cuts on his head and arm. I asked to place crash pads around his bed, but was told that they were not allowed. The front-line workers were mostly caring, but the home was outrageously understaffed. Over the next few days, my mother and I traded shifts to keep him safe from further injury. 

One afternoon, I pleaded with two nurses to keep an eye on the Professor to allow us a dinner break. When my mother arrived after the hour-long absence, he had sustained another major fall in his room, this time resulting in a 10-hour visit to the emergency room that started with Narcan to rouse him from a presumed opioid overdose. He sustained an acromioclavicular shoulder separation, and the ER physician remarked that bloodwork indicated he was over-medicated, and discharged him with a script for half a Percocet for pain every 4 to 6 hours. Nothing more.

The next day, I implored the nursing home managers to secure special provincial funding available for additional supervision. Instead, they suggested we hire round-the-clock private care at our expense, which was financially impossible. Later that afternoon, Aaron called with a new solution: Dr. Sheehan created a new order for my father’s medication: an even stronger pharmacological cocktail. He would continue with the sedating drugs (Haldol, diazepam, and cannabis), and add a 5ml/0.5mg Dilaudid injection every 4 hours. Dilaudid (hydromorphone), he explained, is an opiate pain medication much stronger and faster acting than morphine. “He will stop eating and drinking,” Aaron warned, and be unable to attempt to walk which would solve the supervision dilemma. 

In that moment, I recalled my neighbour telling me about his elderly father’s death. Malcom and his siblings had a conversation with the physician that he interpreted as granting permission for a near-lethal pain killer to hasten death. When the father succumbed a day or two later, Malcom was not surprised, but his siblings interpreted the conversation differently and were shaken. It seemed that Aaron was proposing a rapid, physician-hastened death like Malcom described. Euthanasia.

Fear, anger, anxiety brewed in me. He will stop eating, and not attempt to walk. Did they think that he was disposable in his current state? A state, I realized, that was largely created by Dr. Sheehan’s sedating cocktail. “Look at your patients more closely as human beings in trouble,” Wittgenstein advised his friend Maurice Drury, a physician, in their published correspondence. “I think in some sense you don’t look at people’s faces closely enough.”

Did Dr. Sheehan and the nurses fail to look at my father’s face? 

“No,” I told Aaron. “That’s too much, and I’m really not sure about Dilaudid. The ER physician who saw him yesterday prescribed half a Percocet. I don’t think he would need more than that, if anything. He doesn’t seem to be in pain.”

 “We can always start small, and add more,” my mother added. 

Aaron argued that it would not be possible to draw a smaller dose, which seemed absurd to me. He agreed to speak with Dr. Sheehan, and called back to notify us of a revised order that would include Dilaudid only as needed, and also agreed to seek consent from my mother before administering it. When the calls ended, I shared my suspicion that we may have unwittingly signaled physician-assisted death when we asked for palliative measures to keep him “comfortable.” 

That night, my mother’s friend Mary called. I recounted the story hoping she could shed some light on the matter since she has physicians in her immediate family. Before I could finish, she interjected. 

“Dr. Sheehan killed my mother.” 

She described how her elderly mother was also under the care of Dr. Sheehan in a different nursing home. She asked Dr. Sheehan what he could do to make her mother comfortable. Dr. Sheehan presented an idea for pain management to which she consented. Within a day, her mother was administered what Mary believes was a single, lethal dose of morphine. Once it was too late, Mary realized that she had a coded conversation with Dr. Sheehan. I asked her how she felt about it. She was, and remains, very angry, but recognizes that her mother would not have improved, so in effect it accelerated the inevitable. She believes that her use of the phrase “make her comfortable” was (mis)interpreted by Dr. Sheehan. 

Mary was not the only one who suspected a veiled conversation about euthanasia. Online physician ratings for Dr. Sheehan contained two entries (2009 and 2013) in which anonymous reviewers described similar situations, accusing him of administering lethal doses of pain medication. People with similar experiences shared examples of the codes they misused with unintended consequences on various online message boards: He is in pain. Make him comfortable. Help him along. Let’s start palliative care. These were phrases my mother used in various conversations with Dr. Sheehan and nursing home staff. Nobody clarified what “comfortable” or “palliative” meant. A younger version of the Professor surely would interject Wittgenstein’s classic observation: “Philosophical problems arise when language goes on holiday.”

Later on, I recounted Dr. Sheehan’s orders to my own physician. The moment I identified the proposed Dilaudid dose, she interrupted me. “Oh my God! They’re trying to kill him!”

The next day, my father received his first (and only) injection of Dilaudid, rendering him completely unresponsive. After a number of hours, he roused from unconsciousness. My mother revoked consent immediately. 

***

Though I’d never had to give it serious consideration, euthanasia and physician-assisted death in the abstract seemed a reasonable decision for a person suffering. I never anticipated wrestling with the ethical implications in such an ambiguous context, and having to make that decision for another person. In the days and weeks that followed, my mother and I spent hours discussing the situation at hand. 

Death is not the enemy, suffering is. But the degree to which the Professor was “suffering” remained in question. He had physical and cognitive limitations. He was over-medicated for the sake of convenience, a chemical straightjacket substituting for appropriate care. His dementia would not “get better,” lost functions would not be restored. But was his a life worth ending? People live full lives with impairments identical to the conditions that warrant physician-assisted death in those with dementia. In that context, CBC journalist and disability advocate Ing Wong Ward contested the phrase “dying with dignity” because it implies that death is a more desirable option than life with functional impairments. What message does it send to people with functional impairments? That they are undignified? 

***

Six months passed and the Professor was admitted to hospital with pneumonia where he received IV fluids and antibiotics. He remained mostly unresponsive the first week. We were told he would hang on for a few days at most. During rounds, my mother heard Dr. Upneja tell the medical residents that a healthy person can overcome pneumonia, but dementia renders recovery unlikely. After rounds, Dr. Upneja told my mother, “I rarely give up on patients, but I’m losing hope.” The IV fluids were keeping my father alive, she explained, and he probably would not improve. His organs were shutting down. 

After a week in hospital, the Professor became animated for brief periods, trying to speak though nearly impossible to understand in his weakened state and with a mouth full of debris. He regained the ability to move his arms, though could not reach his face. His colouring was good, but he was on oxygen, IV fluids, and was catheterized. 

Once again, my mother and I found ourselves pressured to consent to euthanasia. My mother and I arrived at the hospital early in the morning on November 10, the day before my father’s eighty-third birthday, to speak with Dr. Upneja. She asked how I thought he was doing. I recounted several cogent and meaningful conversations (for instance, I asked him to comment on my clothing and he had a very definite opinion). His speech improved daily as the debris clogging his mouth and throat was cleared.

Dr. Upneja described the physiology of his current state, calling pneumonia an “assault” on dementia. His brain cannot carry out functions, she explained. She wanted to cease IV fluids the next day. Without IV fluids, she warned, it would be “a matter of little time.” This would end what she perceived to be suffering with no hope of improvement. 

Look at your patients more closely as human beings in trouble. I think in some sense you don’t look at people’s faces closely enough. Did Dr. Upneja fail to look at my father’s face?

My mother was insistent that it not be put off, and urged the doctor to cease fluids immediately. “Tomorrow is his birthday – you can’t kill him on his birthday,” I pleaded.

 “Why put off something you can do today?” my mother replied. 

Dr. Upneja agreed to wait until the day after his birthday to initiate death by dehydration, simultaneously hastened and softened by a steady stream of opioids. Comfort care, she called it. I was prepared to accept my mother’s decision, though I had reservations about death by dehydration. I had little reason to doubt Dr. Upneja’s opinion that he would not improve.  

We arrived at the hospital the morning of the Professor’s 83rd birthday. Dr. Upneja was at his side, gently spoon-feeding water which he was able to swallow. In the hallway, the doctor said that she was surprised to see improvement, and ordered the IV to continue for 48 hours pending re-assessment. Throughout the day, he was animated and spoke to various people who stopped by his hospital bed. 

We wondered what we ought to do if faced with the decision to initiate death in a couple of days. Upon witnessing dramatic improvement, my mother was relieved that the IV withdrawal was delayed. John, his former student and good friend, suggested that we try to glean the Professor’s wishes by determining how he perceived his own quality of life. At one point, when John asked if he liked a particular vacation destination, he replied, “It beats being here.” 

John took that to be a statement of awareness that his circumstances were not ideal. Later, while they were reciting poetry together, John asked, “Do you want to talk about death?” 

 “Death is irrelevant,” he replied.

The Professor defied every physician’s predictions and continued to improve. He survived an additional ten months in hospital, confined to his bed. Despite uncomfortable leg muscle contracture and pressure ulcers (for which he received occasional pain medication), he was content. The level of care he received meant that he was no longer bound in a chemical straightjacket. He was alert, animated, and his sense of humour was restored. He had a voracious appetite, devouring his meals, plus one or two hot fudge sundaes daily. He recited poetry or sang almost daily. He laughed heartily, often at his own witticisms. While he wasn’t always certain who I was, he knew I was family, and that he was loved. 

***

“If that happens to me, just kill me,” my mother said. She believed that, like her, the Professor would prefer death over existence in a diminished state. That was Wittgenstein’s conjuring trick. In spending time with the Professor, I concluded that while it is entirely possible that a younger, cognitively-intact version of himself to view euthanasia preferable to living with impaired capacity, his current mode of Being-in-the-world left him with a different perspective. He repeatedly signaled that he wanted to live.

“Do you think about philosophy?” I asked as we ate hot fudge sundaes in the hospital room about a month before the Professor’s death.

“Not as much as I used to.”

I asked him to tell me about his work, and about his favourite philosophers. He was unable to either recall or articulate much. We sang a duet instead, and he proved that he could still carry a tune better than his daughter.

***

There is a certain ironic tragedy in a dementia diagnosis for a person so committed to an intellectual life, a disease that robbed the Professor of some of his most marked characteristics. For decades, most everything else was secondary to cognitive pursuits – appearances, unpaid household labour, friendships, and social obligations. He wanted to understand and to know, and the vast majority of his social interactions centred around knowledge and knowing. Despite a life devoted to intellect, the Professor still had a rich life when faced with profound cognitive and physical impairments that erased much of his intellectual capital. But it was a Being-in-the-world that, as he put it, “beat the alternative.” His final months consisted of several hundred hot fudge sundaes, poetry and song, and were spent with those who loved him most. By all accounts and in spite of many challenges, a dignified life worth living until its natural and peaceful end. It is a shame when we fail to look at people’s faces closely enough.

 That’s it for Non-Fiction! Next up: Poetry!