Prolonged Grief in a Static Death: My Father’s Seventh year in Permanent Vegetative State

When people ask me how my father is, I don’t know how to respond. The only response I can muster most of the time remains, “He’s still alive”, but I find myself still unable to unpack the many, conflicting meanings behind the statement, and guilty of its evasive, unsatisfactory nature.

Seven years ago, my father suffered extreme dehydration while running a marathon. His heart stopped beating, meaning he was pronounced technically dead, and his brain tissues withered away for fifteen minutes without supply of oxygen from his heart. There were no medical personnel at the scene left to help my father, as all of them were busy tending to other physically injured marathon runners. Finally, some policemen brought him to the nearest hospital, where doctors were able to resuscitate him. They misdiagnosed him with “heart complications”, while my mother and grandparents desperately insisted that there was some larger, more serious issue at hand, something more wrong with him. On the second day, my father opened his eyes, but they were glazed, and he appeared to be nonresponsive to anyone or anything. Only after more than a week and medical air transport to Singapore, renowned for their doctors when the Indonesian medical system would fail us, were we given his final diagnosis: permanent vegetative state.

Permanent vegetative state, or PVS, is commonly associated and confused with comatose state and brain death. Comas occur due to myriad reasons, including injury, or can even be medically induced. They involve a “sleep” state and can be permanent or temporary. Thus, they are not considered for organ donation. The coma state has three possible outcomes: recovery of consciousness, or evolution to PVS, or brain death. Brain death patients suffer an irreversible and total loss of brain function due to severe and complete brain damage and rely solely on life support to survive. These patients die within a few days of acquiring the condition or if taken off life support and thus are pronounced officially dead after diagnosis of the condition.

On the other hand, PVS is distinguished from coma and brain death in its complexity. Unlike brain death patients, someone with PVS has a functioning brain stem despite severe brain damage to other parts of the brain, signifying that some dim level of consciousness and autonomous function may still exist. Thus, PVS patients do not rely on life support and are not considered biologically dead, unlike brain death patients. However, these dying embers of brain function can be both a blessing or a curse, as patients with PVS have the slim potential to regain minimal consciousness or go on living indefinitely without life support and never regain full consciousness. Because of the retention of few autonomous functions, PVS patients undergo “sleep” and “wake” cycles and are still able to perform other motor functions on their own, including breathing and response to tactile stimuli.

In his sterile room on the first floor of our house, my father depends on his tracheotomy tube to be fed, frequent physiotherapy sessions to invigorate his stringy muscles, and an around-the-clock nurse to make sure whatever virus or infection doesn’t get to him in his immunologically susceptible state. He “awakens” and “sleeps” every day and night, widens and locks his eyes with mine at my approach, and makes distorted facial expressions that my family members will laud a smile or frown. There is nothing to “awaken” from, as in the coma state. The PVS is an absolute, infinitely persisting condition. This is simply the nature of most conditions arising from brain damage. Stuck between life and death, a static, living-death state if you will. Once the brain tissues have died, there is nothing to be done. Indeed, PVS seems like a cruel mix up of both coma and brain death.

Recently, I read Esmé Weijun Wang’s The Collected Schizophrenias in my Literature and Medicine class, where she discusses the comfort of diagnosis in mental disorders: “Some people dislike diagnoses, disagreeably calling them boxes and labels, but I’ve always found comfort in preexisting conditions; I like to know that I’m not pioneering an inexplicable experience … A diagnosis is comforting because it provides a framework — a community, a lineage — and if luck is afoot, a treatment or cure” (Wang, 5–6). However, she goes on to discuss that a hierarchy exists within the diagnosis of various mental disorders, which affects the benefits reaped from the diagnosis. As an inpatient at the Yale Psychiatric Institute, Wang describes depressives sitting at the top of the hierarchy, while schizophrenics reside at the bottom. In the chapter “High-Functioning”, Wang attributes this hierarchy to the social inappropriateness of a particular disorder, or “being perceived as incapable of success”.

Though PVS is a physiological instead of mental disorder, the same concepts of functionality affecting the benefits of diagnosis still stand with this condition. I define PVS as a low-functioning disorder according to Wang’s definitions of functionality involving the capability of success. It is clear that PVS patients are incapable of success in their bedridden, vegetative state, and present a financial burden on their families and society. Moreover, low-functioning conditions such as PVS do not reap any of the benefits, if at all, from diagnosis that Wang identifies. Besides imparting social stigma on the family of the patient for their supposed “incapability to succeed”, diagnosis of PVS does not illuminate any miracle treatment options for the PVS patient.

Moreover, diagnosis of PVS as a low-functioning condition does not provide a support group for either the patient or their family due to the social stigma and the minimally conscious state of the patient. According to Wang, patients desires to be seen as successful leads to the tendency to “distance oneself from other, similarly marginalized people who are thought to be even less capable of success” (Wang, 49). We see this desire manifest in Wang herself as an identified high-functioning schizophrenic — she finds herself “uncomfortable around those who are visible psychotic and audibly disorganized … to the screaming man on the bus, or the woman who claims that she’s the reincarnation of God” (Wang, 51).

When my father’s condition was diagnosed, his doctor, the top neurosurgeon in Singapore and doctor of former Prime Minister Lee Kuan Yew, turned towards my mother and said, “Do you realize you are a widow now?” Even though PVS patients aren’t declared effectively dead, the doctor’s remark makes a point about the repercussions of diagnosis of low-functioning conditions such as PVS. My father isn’t technically dead, but he might as well be. According to the biological definition of death, my father is most certainly alive — but everything that has made him a person before his accident, including his consciousness, is gone. Moreover, no treatment options besides home care exist for him, and he will go on breathing and living indefinitely without performing any fatherly duties like he hasn’t in the last seven years.

This blurry ontological distinction between life and death in PVS patients means that families remain in a confused state, unable to grieve and move on properly from the loss of their loved one, while retaining an often misguided hope that the PVS patient will be able to “return” someday. Grief involves mourning the loss of a loved one, and eventually coming to terms with the loss and moving on. But what is one to do when the loved one persists physically, in a slowly weakening, emaciating body, but lost in every other way?

My family’s scrabbling desperation in response to this question manifested itself in a multitude of ways — first in medical options, and then to the alternative, and finally the spiritual. From experimental stem cell therapy, to hosting a sketchy Korean monk who insisted we meditate every day to “open our third eyes” to live in our house for three months, to reciting the rosary prayers three times a day, my family was desperate to get their son back by any means necessary. Not only do the failures of each of these attempts deal a harsher blow than the previous one, but I believe that my family has entered a constant state of denial. They believe that if they search hard enough, they’ll be able to bring their son back.

After doing some research on the topic to see if other families of PVS patients were going through the same thing, I found out that long term care of a PVS patient has contributed significantly to prolonged grief and depression in not just families, but caregivers as well. A 2013 study by Elvira and Cruzado investigated the relationship between caregivers of PVS and minimally conscious state (MCS), and prolonged grief disorder. They discovered that the frequency of prolonged grief was exceedingly high at sixty percent of the fifty-three caregivers studied. Moreover, they discovered that problem-focusing strategies, including active coping, instrumental support, planning, and acceptance, predicted a lower presence of prolonged grief. On the other hand, denial and self-blame were associated with a higher risk of prolonged grief (Elvira & Cruzado).

Another study by Pagani et al. in 2014 tested for physical and mental health repercussions, including anxiety and depressive symptoms, of caregivers for PVS and MCS in a much larger study group of 418 caregivers. According to their findings, female caregivers have poorer levels of mental health than men. Interestingly, anxiety symptoms are related to both negative mental health outcomes in both female and male caregivers, but depressive symptoms are related to only female caregivers’ mental and physical health (Pagani et al.).

So, what steps exist in moving forward? The answer is not much, if any at all. In fact, the best course of action may be to end things completely — by moving forward from a PVS patient’s unclear ontological state to being straightforwardly dead. Currently, the only legally sanctioned method to facilitate this change is what is essentially physician-assisted suicide: the withdrawal of clinically assisted nutrition and hydration.

This summer, I found myself thinking a lot about what death would mean for my father. In dreams, I was plagued with endeavors where I fruitlessly searched for him. The exact details of the many dreams elude me at this point, but a common string bound them together: despite my constant search, efforts, and desperate wishes for him to be found and returned to me, I was unable to reach him. In one of them, I remember catching a glimpse of him, having started a new life and moving on without us. Instead of sharing our hopes for reunion, he refused to be found, choosing instead to stay hidden because of his new life and state.

I communicated my dreams and what I thought they meant to my mother, and she looked at me with sadness and concern. I said, “I think the dreams are a sign he wants to move on, to leave this world and not be found.” I felt so much pity and sorrow for my father for having to be bound to this world. Before his accident, he was very much a free-spirited soul, sometimes to the point of recklessness. From a third-party view, he might have not been the best father and husband. But I know he would have never wanted to be prisoned in this state of half existence, unable to be unfettered from the living world or transcend into the world of the dead. My poor mother agreed with me but admitted she couldn’t ever bring herself to let him pass away through the only options of starvation and dehydration, both contributing to a visually painful, slow process where the patient becomes increasingly emaciated before their body fails them. It surprised me to hear her say she had never considered this option, or that it had never been brought up by my father’s doctor who came around at least twice a week to check up on him. To this day, my mother still cannot bear to let him go, but can’t move on with her life with him still in it either. It may sound horrible of me to say to those unfamiliar with my situation, but as much as I love my father, I truly believe he would be better off dead.

I found that other families of PVS patients seemed to hold the same sentiments as me: that in this case, death seemed more of a release than a loss, or untimely end. In a rich 2014 study by Holland et al. on family attitudes towards their PVS patient relatives, researchers interviewed fifty relatives of PVS patients. They found that the terminology used to refer to the patients did not point at someone who was straightforwardly alive or dead, including phrases such as “the body in the bed”, or referring to the patient as a “shell” or husk” (Holland, 2014). One particular interviewee comments,

“It feels like it’s just a body. It’s Colin’s body being kept alive somehow. He’s not in it anymore … It’s just a shell. It’s a shell of a body. It’s so- so damaged, the brain. I feel that it’s not Colin anymore … It isn’t a life. Is it even an existence?”

Reading many of these comments very personally and deeply affected me, as they were all conflicted feelings and thoughts I had experienced myself many times.

Euthanasia of the PVS is another contested topic, though a highly controversial one, again due to the inability to take a patient-centered stance because of the unclear ontological status of the patient. Because of the potential of drawn-out suffering in physician-assisted suicide, some argue that this is an undignified death. Thus, euthanasia would be the best option to retain a patient’s “best interests” and autonomy. However, in many countries, euthanasia of the PVS patient is still outlawed.

Though governments and physicians have a long way to go in addressing treatment options, physician-assisted suicide, and legally sanctioned euthanasia, I hope that individuals such as I and my family will be one day able to freely choose our own way to end our loved one’s lives, when there is more suffering than life. To close this heartfelt and at times painful to write piece, I’d like to close with a story. I thought about choosing to mull in the irony of it all, or to blame the large, multinational corporation that so poorly organized the marathon and essentially killed my father without ever giving us proper compensation, but most of all I just miss my father and want to pay homage to his memory.

A few days before my father’s incident, I saw Interstellar with him when it had just come out in the cinemas in Indonesia. In the movie, ex-NASA pilot Cooper leaves his ten-year-old daughter Murph to search for a new planet in outer space. However, Cooper only completes his mission after many decades, as time passes by differently in space, and when he returns to Earth he reunites with an elderly and dying Murph. To this day, part of me sees the movie as a message. So, I retain the faint and inexplicable hope that one day my father, like Cooper, will eventually return to me. Impossible as that is, I hope that in the meantime, my father will be able to endlessly roam the cosmos, to do what he loves, and to be free.

References

Scientific articles

Calabrò, Rocco Salvatore et al. “The Right to Die in Chronic Disorders of Consciousness: Can We Avoid the Slippery Slope Argument?” Innovations in clinical neuroscience vol. 13,11–12 12–24. 1 Dec. 2016

de la Morena, M. J. Elvira, and J. A. Cruzado. “Caregivers Of Patients With Disorders Of Consciousness: Coping And Prolonged Grief”. Acta Neurologica Scandinavica, vol 127, no. 6, 2013, pp. 413–418. Wiley, doi:10.1111/ane.12061. Accessed 5 Dec 2020.

Holland, Stephen et al. “Death, Treatment Decisions and The Permanent Vegetative State: Evidence from Families and Experts”. Medicine, Health Care and Philosophy, vol 17, no. 3, 2014, pp. 413–423. Springer Science and Business Media LLC, doi:10.1007/s11019–013–9540-y. Accessed 5 Dec 2020.

Pagani, M. et al. “Physical And Mental Health, Anxiety And Depressive Symptoms In Caregivers Of Patients In Vegetative State And Minimally Conscious State”. Clinical Psychology & Psychotherapy, vol 21, no. 5, 2013, pp. 420–426. Wiley, doi:10.1002/cpp.1848. Accessed 5 Dec 2020.

Books

Wang, Esme Weijun. The Collected Schizophrenias. Graywolf Press, 2019.