The Yale Journal for Humanities in Medicine
Spirituality, Religious Wisdom, and the Care of the Patient
Apathy in the Context of Illness: A Catholic Perspective
Myles Sheehan, S.J.,
Apathy is a failure to care or attend to one's own needs or the needs of others. If one thinks about apathy in the context of illness, apathy can afflict a patient or it can afflict caregivers. Like any sign or symptom, it has a differential diagnosis that can point to a variety of causes as well as suggestions for appropriate responses. What would lead someone who is ill not to care about one's self? Why would caregivers not care about the suffering of their patients? These two questions, one focused on apathy in a person who is sick, the other on apathy in those who care for the sick, need two different approaches in an attempt to provide a useful answer. But both apathy in a patient with a serious illness and apathy in a physician who is not interested in the suffering of his or her patients have common themes. An apathetic patient and an apathetic doctor are disconnected from at least part of their experience, they fail to see and feel what should be obvious and urgent, they are inattentive to what should be grabbing their attention. If one thinks of delirium as a cognitive inattention where one cannot focus and think clearly, apathy is like a spiritual delirium where there is inattentiveness to meaning so that the spirit cannot confront reality.
Delirium, although it has colloquial meanings, has precise meanings when it is used diagnostically in the care of patients. It is manifest as confusion and misperception of reality with the hallmark of a delirium being inattention. One cannot perform simple tasks, like reciting the months of the year backwards, because the mind cannot hold the information, process it, and then repeat it. Other stimuli get in the way. As an example, "sundowning" is a manifestation of delirium and refers to a common problem in hospitals and nursing homes, when, in the early evening, patients, particularly older persons with an underlying dementia, may become very agitated, have vivid and frightening hallucinations, and be difficult to comfort or keep safe. In thinking of apathy as a spiritual delirium, I do not mean that cognitive delirium is an exact model with perfect similarity. My point is that apathy manifests in multiple ways but it is a spiritual inattentiveness to meaning so that an apathetic individual either is unable to care about things of great importance or misperceives what is truly meaningful.
In considering apathy, I would like to do the following. First, I will present a patient I worked with where apathy was a prominent feature, discuss a differential diagnosis, and suggest options for treatment. Second, I would like to shift the focus a bit and consider apathy in failing to care for others. To do this, I will use a passage from the New Testament to consider apathy from a Catholic view. Against this background, I will more specifically discuss the apathy of caregivers, especially physicians, think about the causes, possible responses, and potential pathways in healing the apathetic.
Apathy in a Person Facing Serious Illness
My most memorable case of apathy in a patient was a man in his seventies with widespread lung cancer who was in an in-patient hospice setting. He was mildly unpleasant and rude to those who tried to care for him: questions not answered, turning away when spoken to, refusals of attempts to change bed linens or assist him with hygiene. He gave no evidence of caring much that he was dying; there was no hint that he attributed any particular significance to his dying, no evidence of some sort of struggle, just a diffuse nastiness to those who entered his room. I asked him if there was anything I could do to make him more comfortable, what he would want to make his dying as good as possible for him. He responded: "Doc, for me, a good death, is to pass while I am watching Vanna White on Wheel of Fortune."
I left the room puzzled, annoyed, and shaken. In the days I cared for him, this man did not seem to care much about anything. There was no feeling about his dying. There was little said about symptoms or pain. There were few complaints unless we probed a bit too much or tried to get him to clean up or clean the room. How does one approach the care of a patient such as this man? What has happened to him? What can be done?
In thinking about how we care for patients with any type of problem, we need to respect the reality of persons in their wholeness and not focus on only one aspect of their humanity. Sulmasy has integrated the spiritual into the more traditional biopsychosocial model by suggesting a biopsychosocial-spiritual model for the care of patients at the end of life. In light of this holistic approach when we consider a patient like the man with lung cancer, we should not forget the importance of our training in allopathic ways of healing. What is the differential diagnosis for the symptom of apathy?
Biologically, I would most be concerned that the man I described could have a personality change related to the lung cancer. This could involve a direct effect, like a metastasis to the brain, particularly in the frontal lobes, or it could be a metabolic derangement like an elevated calcium, a depressed sodium, or another disturbance due to either tumor spread, a hormone produced by the tumor, or a consequence of treatment of the tumor. Again, possibilities here would include things like an infection, for example a cryptococcal meningitis. He may also be hypothyroid.
Psychologically, there is an overlap with the biologic and the social. One would wonder about this man's lifelong patterns, engagement with the world, previous functioning, education, work and the kinds of relationships he had. Is this behavior a manifestation of depression? Is the behavior sufficiently odd that we would label it schizoaffective?
Or is the apathy that we see a manifestation of a person who has just been through too much and he is spiritually and emotionally numb? The unrelenting rounds of chemotherapy and other treatments, the difficulty with coming to grips with one's own dissolution, the coping with illness---not just big existential questions but daily annoyances---have left this man stretched too thin and, like a rubber band stretched too often, unable to snap back.
When one considers a sign or symptom, one needs to examine the time course of the sign, what has precipitated it or made it go away, made it worse, made it better, what other signs come with it or are not present. As it turned out, the patient I described had a lifelong pattern of being a loner. The lifelong pattern of being alone, perhaps even a bit strange, gives us a suggestion that under the stress of illness, the behavior we see is a manifestation of the man's personality style. We all have personality styles; under severe stress some of these styles blossom into personality disorders. What caused my patient's personality style one can only guess.
The man did not provide any reasonable entrance into his spiritual history or beliefs. Given that his vision of a happy death is Wheel of Fortune with Vanna White, I suspect his spirituality was not tremendously profound or was, conversely, nihilistic and rejecting of meaning. One can only speculate about the man's relation to God or other persons. One can speculate that this man is in tremendous spiritual danger or is tremendously spiritually wounded. I do not think it wise to judge.
So what does one do to care for this man? A bit of history and some reflection make it seem likely that this man was battered by his illness and by his history. Under the stress of his lung cancer and its treatment, he withdrew further from society and from interactions. Given his underlying personality, one needs to be cautious about attempts to reverse this man's withdrawal in the few days he has left.
For those who cared for the man, who were shocked by his insensitivity to his own self and his own condition, I would suggest that the best spiritual care is to let God be God, recognize one's own limits as caregivers, and realize that the historical clues we had about the long term nature of this man's personality suggest only a very limited ability for change. Caregivers of every type need to beware of the dangers of messianic illusions and self-assertion in thinking one can provide meaning to another person. A caregiver can provide care that is attentive and shows the meaning the caregiver finds in working with an individual. In the example of this patient, the goal was to provide care that was human, polite, and respectful, and even though the isolation, negativity, and nihilism of the patient was hard to endure, we tried not to withdraw in response. In being gentle with feeding, keeping him clean, changing linens and the like, the care team reminded itself that this man was made in the image and likeness of God, even if the image seemed pretty tarnished.
The spiritual antidote for apathy is not frenzied activity, but caring. A person with a delirium does not respond well to being yelled at to "pay attention." There are reminders of the time, the place, and the reasons why things are being done to allow the delirious patient to reorient and feel safe. In the case of apathy, where one is inattentive to meaning, it is unlikely that a caregiver can redirect that attention by a frontal assault. That is what I mean by "let God be God." Good people can often have agendas for other individuals. I and the other members of our team had an agenda that this man would show some humanity, ask and receive some comfort, and allow us to care for him in ways that most other people find comforting. We had a way that we wanted to save him. But that is between God and this man. It is not that I am apathetic to his spiritual fate. But I am not the savior. As caregivers, we can provide care that is attentive, humble, and open to engagement. But we cannot bring salvation, we cannot force our meanings onto our patients.
In the Catholic tradition, one would hope for the opportunity for prayer, the sacraments, and the attention of a community that would weave this man's dying with the story of how Jesus died. When we are suffering in any one of a number of ways, it is tempting to view ourselves as insignificant, as worthless, and to withdraw. In the Catholic community, death has traditionally been viewed as a public and communal event of tremendous significance. There is an anointing with oil to heal the spirit and provide any other healing that God wills, there is forgiveness of sin that separates us from God and from the community of believers, and we receive a final communion that is termed viaticum---food for the journey to heaven. One finds meaning in personal activity like prayer. Connection remains through the activity of the community. The sacraments allow one a visible sense of God's presence as well as a reminder of how one's own story is part of God's larger story of care. A Catholic spirituality in serious illness is profoundly attentive to meaning and hope and has a variety of ways to anchor a person being battered by illness. Questions of meaning, and hope, and survival can have a different emphasis and a different urgency depending on connectedness with a larger story and a larger community. As Catholics, our stories as individuals can be found to have meaning when they are part of the larger stories of Jesus and the Church. It is not that every Catholic is connected or buys into the story, God knows. But there is the opportunity to find in the tradition the opportunity to see significance in one's own life and one's own dying because of our reminder that Jesus is part of our life, our community, and our hope.
Although the Catholic tradition can provide a rich fabric for individuals to trace out the individual thread of their lives as they face serious illness, for those who have different traditions, are not really religious or not even self-consciously spiritual, there remain opportunities to look for meaning and community. Developing paradigms of meaning centered care for patients with life threatening illness, looking for hope, and exploring opportunities for transcendence are now being explored, particularly in the work of Breitbart and Chochinov. ,  Reframing hope as one's life approaches an end can take many paths. The Catholic tradition provides one path that I follow and believe to be true. But I value the journey of others as they look for meaning and explore their own spirituality in ways different than mine. What is worrisome and upsetting is that the treatment individuals receive with serious illness may cause some of them to lose meaning, feel disconnected, and retreat into apathy.
The analysis of my case study leaves a lingering question. Although the history of this case suggests that the apathy this patient manifested in his final days was partly a result of personality traits that predated his lung cancer, one wonders if the care he received during his illness reinforced his isolation and made him feel confirmed in his choices that there was no meaning in his living and dying. This man had a story that we never really knew and when he came to the hospice in his final days he was not going to share it with us. Perhaps long before he developed lung cancer he had a tendency to be inattentive to the meaning of his life, unfocused on the possibility of hope, and unable to read the details of his own life story, But, just as a person with a mild dementia can become ravingly delirious if a physician gives an inappropriate medication, so, perhaps, this gentleman with lung cancer may have been pushed into the full-blown spiritual delirium of apathy because of what was and was not done to him.
Apathy of Caregivers
And this leads us to think about apathy in illness that may be more pervasive than apathy on the part of patients. What is it like to be sick and those who are supposed to give you care do not care about you? One may have an illness that requires skill and knowledge, but the caregivers, although fascinated by your disease, really don't care about you. What's the worst thing about being a great case? Your disease is fascinating, you as a person are incidental. I often wonder if clinicians sometimes choose between two CD's to play as they leave their hospital: Tina Turner singing "What's Love Got to do with it?" or Carly Simon's "I haven't Got Time for the Pain."
In the Christian tradition, love and time for the pain are key refrains. A failure to care may be indicative of a profound inner failure so severe as to merit damnation. Thus when apathy is argued to be a sign of a serious spiritual illness, it is not that apathy is bad because one will be punished. Apathy is bad because one is separated from God. To return to the metaphor of apathy as spiritual delirium, in considering an individual who is apathetic toward the suffering of another, that person has a kind of spiritual disorientation. One cannot focus on God if one does not know that means caring for others. In failing to care for others, one fails to attend to the center of reality whom Christians know as God. The scene of the final judgment, from Matthew's Gospel, presents a dividing of humanity into sheep and goats on the basis of attention to other persons and their needs:
There are six points to attend to in considering this scene of final judgment.
First, is a hermeneutic one. Apocalyptic language about heavenly reward or damnation may sound strange to our ears. The crucial point is not wondering about sheep, goats, fire, or a heaven in the sky. The reality that apocalyptic images point to is union with God or separation from God. The former Christians call heaven, the latter is known as hell.
Second, this passage reveals that union with God is based on attending to other individuals. Just as cognitive function requires attention to a variety of details and sorting them out in importance, spiritual function requires attention to meaning and giving prime importance to the care of those who are suffering. There is no false dichotomy between caring for God and caring for others. If one does not care for others, then one does not care for God.
Third, the judgment that caring for the needy is caring for God is based on a relationship of kinship between the divine and all humans. The translation "the least of these who are members of my family" may not be as inspiring as "the least of these my brethren" but it gets the point across that God's family are those in need and that ignoring that need means one ignores God.
Fourth, the link between the divine and the human that is suggested in the scene of the Last Judgment is at the heart of Catholic and Christian theology. Christians worship a God who is passionately involved and who is unchanging in love, concern, and openness to the needs of creation. The nature of God is seen in the Incarnation and in the Trinity. The Incarnation is God becoming human in the person of Jesus: "For God so loved the world that he gave his only Son." (Jn 3:16a) The Trinity is the recognition that God is one but exists as a community of love, made up of three persons whom we know as Father, Son, and Spirit. The nature of God is shared love that goes forth to creation and to be with humanity. God is not apathetic but the deepest reality of care and love. The individual and communal challenge is to live in the presence of such a reality.
Fifth, this incarnational faith that equates treatment of the sick, beggars, prisoners, and the needy with how one treats Jesus, is part of what the Catholic tradition would consider a sacramental view of life. The things of life reveal God's presence. A sacrament is a visible sign of an invisible grace. In the Catholic tradition there are seven formal sacraments. But the vision is that the ordinary things of life are filled with God's presence, be it water, or oil, or bread and wine, or a word of forgiveness, or a pledge of love between husband and wife, or a summons to serve in ordination. God fills the world with God's presence and care in the midst of beginnings, transitions, sickness, marriage, and death. God nourishes us in this journey. In thinking more specifically about sacramentality and the care of the seriously ill, the healing presence of God can be seen in multiple ways. Just as a the person who is in prison, hungry, naked, or ill does not have a sign that says "This is Jesus" so spiritual care can happen without priests, incense, churches, and other religious trapping. The group psychotherapeutic experiences pioneered by Breitbart and that are based on the work of Viktor Frankl focus on finding meaning among patients with advanced cancer without any specific religious, much less Catholic, emphasis. Yet in looking at the group process as described, there is a profoundly sacramental element: community is shared, meaning is found, forgiveness is explored, and healing comes even as death is acknowledged.
Sixth, the reverse of apathy is seen in the God who is present when there seems to be no hope and is one with those who feel isolated and despairing. The Jesus of the Last Judgment is a Jesus who is with those who are in big trouble. This is a Jesus who rewards compassion, caring, and solidarity with those whom he calls "the least members of my family." In contemporary Catholic writing, solidarity is a recognition of the worth and value of humans, an attitude that demands action, and a commitment to reforming social structures that do not respect human dignity, isolate and divide people, or leave individuals overwhelmed and unable to respond to situations of injustice, neglect, or oppression.
So what does this all have to do with apathy and the care of the patient?
Four things. First, not caring is a sign that one is not in touch with God or with others. It implies a danger of spiritual death. Second, there is no love of God without caring for individuals in need. Third, the very nature of God is caring, attentive, nourishing, and loving. God is a lover who creates a community of lovers where individuals are meant to be welcomed, nurtured, nourished, forgiven, sometimes challenge and always loved. The Church is supposed to be the ideal of that community. But the loving God is present when solidarity and compassion is present. Four, apathy can happen in the care of persons who are ill when the focus is not on the individual as a person. In the Catholic tradition, we would describe apathy in a caregiver as evidence that the patient is not being cared for in a way that respects her or his human dignity, a dignity that is ultimately in each of us because Christ shared our humanity, died for each of us, and continues to care for us in our individuality. There is a failure of human solidarity: doctor does not recognize patient as brother or sister, and, ultimately, as Jesus. A failure to pay attention to the cues of one's environment is the hallmark of a cognitive delirium and it results in misperceptions and hallucinations. The doctor who is apathetic is spiritually delirious. Inattentive to what truly is important, the doctor misperceives the reality of the patient and of the doctor's role to heal.
What about this failure that we can sometimes see in attending to the suffering of our patients? Doctors and others can be so intent on treating a disease that they avoid exploring the ways to bring comfort to an illness. Illness is what a person goes through when sick. Disease is the biomedical grid that physicians use to interpret the experience of their patients as one part of the therapeutic process. There is nothing wrong with using that grid if it is part of a process of recognizing the needs of the person before us. That is part of the reason why I deliberately using a biomedical model in coming up with part of the differential diagnosis of apathy in a patient with lung cancer. It is part of the reason why I am using delirium as a metaphor for apathy. But when the biomedical grid becomes the only way we consider our patients, when we do not consider their lived experience, then we become apathetic to them as persons. Doctors and other caregivers who can seem apathetic are focused on treatment, remission, lab reports, and the events of their own lives. There is an avoidance of even a glance at the social, psychological, and spiritual woundedness of patients. Although individuals pursue alternative and complementary therapies for a variety of reasons, a study published in 1999 describes young women with diagnoses of breast cancer, many of whom had very favorable prognoses, will seek out alternative health practitioners because their allopathic physicians were not paying attention to their psychological distress. And it is a bit worse than that. There is evidence that some caregivers do not attend very well to the physical symptoms of serious illness. In a 2002 article about symptoms and suffering at the end of life in children with malignancies treated at an academic teaching hospital, the parents perceived that their children had suffered from a variety of symptoms that the doctors ignored in their pursuit of treating the cancer. This is inattention to the meaning of reality.
What is the differential diagnosis for the apathy that we sometimes see in our hospitals and our clinics? Why is it that pain is inadequately treated and that people are given aggressive treatment regimens directed at tumors, infections, or failing hearts but that some clinicians seem not to notice the physical pain, distressing symptoms, loneliness, fear, and existential distress?
Some might call this professional distance. Professional distance makes sense in emergency situations. It is not apathetic to withhold some of one's emotions and feelings so that one can continue to care in difficult circumstances. It is not appropriate to be so overwhelmed with emotion and sadness that one cannot face a crisis with a patient. But there remain options other than apathy and avoidance, there is a solidarity and caring that manifests an accurate empathy in tune with the existential realities of each patient. That kind of discerning eye and open heart is therapeutic and professional. But the distance that is just apathy seen in a white coat is neither.
What is the cause? The diagnosis for the sign of apathy in a caregiver may be related to a system of training and a culture of medical practice that has neglected the spiritual needs of caregivers and has, in some ways, brutalized many individuals. Just as apathy because of emotional numbness and a kind of traumatic overload can be seen in patients, akin to the apathy of a soldier weary from battle, so physicians and other caregivers can be overwhelmed by the experience of their patients. Physicians usually begin as medical students who are genuinely gifted and caring. But medical training creates wounds. Patients one has cared for deeply die. Other patients can drag down the conscientious and caring physician like a drowning person can drag down someone who lends a hand. Physicians have not been trained how to look at the spiritual and psychological needs of our patients nor do many acquire even simple tools to care for these needs. Given the ways in which it can be difficult and painful to work with patients who are seriously ill, it is not surprising that there are physicians who focus attention on other elements of patient care that seem more rewarding. We may avoid solidarity with the sick. Our medical system does not reward compassion: it rewards publication, grants, and clinical productivity. Finding meaning, reframing hope, considering existence and spiritual well being are tough tasks in contemporary medicine. It is not always easy to face reality.
How does one approach apathy in a caregiver?
One can look at apathetic patients and apathetic clinicians and come up with diagnoses, judgments, and warnings. That is probably the stupidest approach possible. It can be satisfying to condemn the behavior of certain physicians. It may make one feel smart and self-righteous to wag one's finger in judgment at physicians. But judgment is not the appropriate response in the Christian tradition: "Do not judge, so that you may not be judged. For with the judgement you make you will be judged, and the measure you give will be the measure you get. Why do you see the speck in your neighbour's eye, but do not notice the log in your own eye?" (Mt 7:1-3)
of judgments, building community and supporting caregivers in a wider
search for meaning in their work are more appropriate responses.
To return to the idea of apathy as spiritual delirium and
inattention to meaning, one needs to provide a framework for meaning
and a reorientation to what is truly important.
In speaking about care for patients and medicine as a
profession, Cardinal Joseph Bernardin argued that one of the
responsibilities physicians owe their patients is:
"attending to your own spiritual needs as healers.
As a priest or a physician we can only give from what we have.
We must take care to nurture our own personal moral center.
This is the sustenance of caring."
The differential diagnosis of apathy in a patient includes a broad array of possibilities. In those cases where a specific, treatable, organic etiology is not identifiable, one continues to care for that person with respect, dignity, and seeking in the interaction opportunities for personal contact and meaning. Key is creating a community where individuals show a patient battered by illness that she or he is cared for and respected. The differential diagnosis for apathy in a physician includes burn out, greed, competing pressures, and, perhaps, woundedness and inadequate self-care. The treatment plan as well involves a community where challenge, support, forgiveness and encouragement for the future can be found. Just as patients deserve mercy and compassion, so do caregivers. To reconsider Cardinal Bernardin, care for the caregiver means attention to spiritual needs and nurturing the moral center.
Can we look to ways to attend to spiritual needs and nurture the moral center? In the Catholic tradition, there is a group of customs known as the spiritual works of mercy. In caring for the apathetic physician, all seven might be necessary: instruct the ignorant, counsel the doubtful, admonish the sinner, bear wrongs patiently, forgive offences willingly, comfort the afflicted, and pray for the needs of the person. Those who are educators can instruct those who are in training. Those who are friends and colleagues, can provide advice and comfort. Those who are co-workers who feel the lash of a tongue because the doctor is too busy to pay attention need to forgive but also gently admonish. It is mercy and compassion to tell a physician who is motivated only by economic gain that he or she is in danger of damnation. And prayer is not to be forgotten. Engaging those who are wounded and apathetic in a community of prayer may provide new connections. It also recognizes that meaning is found in the center of all meaning, God, and not in our activity. Once again, allowing God to be God and realizing one's own limits is where prayer can energize and transform.
In the scene of the Final Judgment, Jesus holds us accountable for our behavior to those in need. If apathy is a spiritual delirium where there is inattentiveness to meaning, then the cure is mercy, compassion, and a deep attention to wisdom that can reorient both patients and their doctors. Starting out with a heart of mercy and compassion will bring us to ways to explore meaning, reframe hope, and build community for those with serious illness as well as for physicians and other caregivers who have lost meaning and are displaying the spiritual warning sign of apathy.
 Sulmasy DP. A biospychosocial-spiritual model for the care of patients at the end of life. Gerontologist 42:24-33. 2002.
 Breitbart W, Heller KS. Reframing hope: meaning-centered care for patients near the end of life. J Palliative Medicine 2003; 6: 979-988.
 Chochinov HM. Thinking outside the box: depression, hope, and meaning at the end of life. J Palliative Medicine 2003; 6: 973-978.
 Breitbart W, Heller KS. Previously cited.
 Kleinman A. The illness narratives: suffering, healing, and the human condition. New York: Basic Books. 1998.
 Burstein HJ, Gelber S, Guadagnoli E, Weeks JC. Use of alternative medicine by women with early-stage breast cancer. N Engl J Med 1999; 340: 1733-1739.
 Wolff J, Holcombe GE, Klar N, Levin SB, et al. Symptoms and suffering at the end of life in children with cancer. N Engl J Med 2002:342;326-333.
 Bernardin J. Renewing the covenant with patients and society. Address to the American Medical Association House of Delegates. December 5, 1995.
Published: September 17, 2004