Summary and Conclusion - Pain, Caring and Transformation

6. 6. Summary and Conclusion
   Pain is at once both the most general and universal of human experiences, and at the same time the most particular, private experience each of us endures.  It is unique among the senses, because while we can all see the same mountain, smell the same flower, even taste the same cup of tea, we each experience our own unique pain inside our own body.  While it is easy to empathize with another’s pain, and in fact recent studies have shown that the nervous system responds in similar ways when we see someone pricking their hand with a pin as we do when our own hand is pricked (Singer, 2004) and that mammals as seemingly different from us as mice experience empathy for their cage-mates (Langford, 2006) it is also easy to doubt another’s experience of pain as “an exaggeration” or “all in the mind.”  The history of Western medicine has shown that male doctors are particularly prone to doubting a woman’s reports of pain, or attributing it to a mysterious anatomical difference (the wandering womb of hysteria).  This doubting of what to another person is incontrovertible is itself wounding, as shown by Scarry’s thoughtful descriptions of torture.  Pain is at some level the thing that binds us to our individuality, and to reality itself, as when the dreamer pinches himself to ascertain that his experiences are real, that he is really himself.  It is [contradictorily] the ultimate proof that we are in the moment inhabiting a shared reality with others rather than a dream world of our own creation.  Not surprisingly, pain is experienced in a rich cultural context that includes our knowledge of our body’s interior, the cultural implications of pain as a symptom of possible illness, with all its life-threatening manifestations, and the meanings and understanding around communicating that pain to others. 
   In her book, The Myth of Women’s Masochism, Paula Caplan writes: “Society tells women to starve, paint, pinch, put and otherwise distort our bodies in order to be thin, colorful, busty, hippy, and firm – but not too thin, colorful, busty, hippy and firm…  We are also told that women are supposed to have babies, but soon after giving birth we are to return to our slender, youthful appearance, despite the major physical upheavals of pregnancy and delivery and despite the much-interrupted sleep that goes with having a newborn and exhausts most new mothers.  We also learn early that old women are neither attractive nor dignified in the eyes of men, even old men.”
   One of my first patients as a Clinical Psychology Practicum student was a woman in her 60’s whom I visited weekly at her home.  She was obese, and a hoarder, in her own words a ‘pack rat’.  She suffered from chronic fatigue and aches and pains all over her body, and had at one time or another been diagnosed with lupus, cancer, Lyme’s disease, fibromyalgia, arthritis, chronic obstructive pulmonary disease (COPD), diabetes and numerous other serious chronic illnesses and conditions.  Before going to see her I was warned that there would be nowhere for me to sit.  In fact, she had cleared about four inches off the corner of a couch opposite her wheelchair from the clutter, as I discovered when finally she let me in (not on my first or even second attempt).  Eventually she positioned a folding stool, and then a director’s chair, for me, slowly inching closer to her own seat as the year went by.  She owned two guns (although she didn’t know where they were, in the clutter) and constantly fantasized about taking herself out with her doctors.  Because of the guns, I had to call my supervisor each week before I entered and after I left, and as time went by and she let me into her confidence it became increasingly hard for me to ‘hold the frame’ and exit after the 50 minute hour, which made me feel ashamed because I had to make that call late.  Her home was littered with well-thumbed books, among other things, but her eyesight had deteriorated such that she was no longer able to finish a novel.  So, on her birthday, I gave her a humorous book on tape, although therapists don’t customarily give gifts to their patients.  She desperately wanted someone to connect with her intelligence.  Instead, she had been in a series of abusive relationships, starting with her adoptive parents or perhaps even earlier than that.  She believed that the doctors had put her on a bad list, since she was so often ill.  She said that if she could, she would invent a poison to spray on everyone in the world except for the Bushmen.  When I asked if that included me too, she was willing to spare me along with the Bushmen.  She saw as her soulmate a pet dog from childhood that still appeared in her dreams.  After our last session she gave me an unopened bottle of women’s vitamins, the same brand she took herself, and I thanked her for wanting to take care of me.
   Since then, I have often thought about this woman in my prayers, and I wonder now after writing this literature review if she might have had a different experience had she encountered a more caring healthcare environment.  She was by no means an easy person to get along with, and I am not certain how much she changed during our time together.  With hindsight, I wish that I had the tools then that I have now.
   Another patient came to see me who actually listed as a medical condition the ‘pain in the shoulder’ of Japanese menopause for which in the West we have no name.  She believed that her condition was due to arthritis, or to a no-injury car accident she had suffered 10 years earlier, although there was no medical evidence for either of these things.  Again, it took weeks and much patience on my part before her weekly attendance at sessions became regular – she kept calling in sick - but once we got to this point she became one of my most faithful patients.  For many months, she complained about having to see me at all, saying that I was too young to understand, that we did not have the right connection, or that she only wanted medication.  Eventually, she revealed that after being abused by a man in her teens she felt that she had been abandoned by God, that she was no longer a good person.  I saw her for over a year, when she had to end the therapy because her insurance changed.  In our penultimate session, she told me a dream she had some years earlier, in which she met God.  It was a powerful dream that had left her elated for weeks, and we both teared up when she talked about it.  During the time she saw me, she made many changes in her life and went through a number of transitions that included accepting and adjusting to her chronic illness, and learning to spend time alone.
   As the history of pain relief clearly indicates, medicine, even scientific medicine, is a cultural artifact.  In the words of Oliver Wendell Holmes (1891), “The truth is, that medicine, professedly founded on observation, is as sensitive to outside influences, political, religious, philosophical, imaginative, as is the barometer to the changes of atmospheric density. Theoretically it ought to go on its own straightforward inductive path, without regard to changes of government or to fluctuations of public opinion. But look a moment while I clash a few facts together, and see if some sparks do not reveal by their light a closer relation between the Medical Sciences and the conditions of Society and the general thought of the time, than would at first be suspected.”  We are now going through a tide change in attitudes toward the mind-body relation.  Physiological studies conclusively demonstrate, as Patrick Wall writes in his book Pain: the Science of Suffering, that empirical facts do not support this Cartesian distinction so embedded in Western culture.  Increasingly, not only is the brain seen as the seat of the soul, with the advent of new drugs for every kind of emotional pain, but also the mind has been proven again and again to lay the ground for the experience of physical pain, and be capable of reducing it, as shown by the many examples in Jon Kabat-Zinn’s book, Full Catastrophe Living.  What remains is for the second half of this equation to trickle down into common practice and folklore.
   The problem is that this becomes stuck against the age-old conundrum of male doctors doubting the reality of female patients’ suffering.  Women experience a lot more stress-related conditions in our society because women experience a lot more stress.  Regardless of the changes brought about by feminism, women still earn less, work harder (both in the workplace and the home), end up holding the baby, and are devalued by society, including other women, as soon as they show signs of aging.  Women are far likelier than men to experience sexual abuse and molestation, experiences that often lead to chronic illness and pain in later life.  Medical science has been successful in the treatment of acute conditions, but not so chronic illness.  For this reason, medical professionals often shun patients (commonly women) who fail to get better.  Society has an unrealistic model in which death is seen as a medical error, and the poor health that still often accompanies aging as a sign of insufficient fortitude and self-care.
   By contrast, care and compassion from others are perhaps the most necessary requirements for healing.  The trainer who led me to Jon Kabat-Zinn’s book had attended one of his courses, and said to me that he was one of the most compassionate people he had ever met.  In a room filled with over 30 participants, he made every single one feel heard and personally understood during the course of the first few sessions.
   I had the privilege of leading a stress management group based on Jon Kabat-Zinn’s program, and it was one of my most memorable training experiences.  In the course of leading the group, I re-read the book, and realized for the first time the importance of transformation, change to the self – whether one’s personality or worldview – as an essential element in healing.  In the last session of the 8-week group, I asked the patients for feedback about their experiences.  One woman said, “It’s not that I’ve learned to relax, it’s like I’ve discovered a switch in my head that turns on more calm.  It’s always been there, but I never knew it before.”  She and another patient both said that practicing the meditation made them feel closer to nature, an expansive transcendent experience that had never been discussed explicitly either in the group or in the readings.
   Working individually with this same patient, I was able to communicate caring with her to help establish a strong bond between us that, I think, helped her recover.  She came to see me for posttraumatic stress disorder after she had been brutally assaulted and robbed in her home.  The first session, she told me that she was not someone who easily talked about their own problems, it was against her upbringing.  Instead she liked caring for others.  As she sat earthily on the couch and recounted her experience, I noticed that she was still sweating and shaking when she talked about it.  I told her it was very brave to talk about it this way, and I offered to get her a glass of water to help her calm down, which she accepted.  I think it was this caring communication that both cemented our relationship and eventually facilitated the patient getting over her trauma and beginning to make new friends in the city she had moved to, although I am not sure if she still experiences the neck and shoulder pains that came after the attack.
   Even in the psychoanalytic literature, there is now discussion of compassion, as a factor in psychotherapy.  However, I have chosen to review Carol Lepannen Montgomery’s book Healing Through Communication: the Practice of Caring because caring for patients with chronic illness and pain occurs almost invariably in the context of their experiences with medicalized healthcare, in spite of the fact they might seek psychotherapy because they also have depression or anxiety.  Additionally, although compassion and caring are almost synonymous, compassion is something that exists more within the experience of the caregiver and is given to the patient, whereas caring and its communication happen between the caregiver and patient, with the patient in the foreground of the relationship.
   Caring communication can, I think, bridge the gap between scientific awareness of mind-body effects and ways of actualizing this knowledge in the culture of patients without making them feel disbelieved or blamed for their pain.  This is not an easy task, and requires a great deal of skill.  I feel that I have learned a lot from reading Montgomery’s book that might have helped me in my practice if I had known it sooner.  One patient saw me wanting to join the stress management group, but instead she was only able to come to individual sessions because of her tiredness in the evenings.  After a long period of illness, she had finally been diagnosed with multiple sclerosis.  She lost her job, her home, and her marriage.  When she came to see me, I think she wanted hope that she could regain her old life.  She felt that her life had shrunk, like tunnel vision.  She complained that whenever she tried to go to therapy groups, the chairs were too hard.  She even felt that the soft sofa in the room where I saw her was like concrete against her delicate skin and bones.  I was not able to give her the hope that she wanted, and perhaps the couch was a metaphor for her wanting me to be softer.  In the end, she decided to see a nutritionist instead.
   In her book, Encounters with the Invisible, Dorothy Wall describes a moving scene in which her neighbor, a midwife, silently massages her feet, warming them with the heat of her body and allowing herself to be cooled at the same time.  This to me is a perfect exemplar of caring.  Similarly, the acupuncturist who silently listens to the flows of her pulse, and like the traditional Japanese doctor seeing the menopausal women with cold hands and feet and pain in the shoulder, listens to her multifarious symptoms and pains, without doubting that they are somehow connected within the person whose body and soul are entrusted to her care.
   This is my second doctoral dissertation.  When I was writing the first, my brother died of leukemia.  He died of pneumonia following a complication of his bone marrow transplant, and I sat by his side as he panicked, distressed and unable to breathe.  I had no idea what I was supposed to be doing.  Eventually we said a brief goodbye and he was intubated.  I sat by his side, holding his hand and not knowing what to do, while the ventilator pumped air into his lungs until his heart stopped beating.
   In the early stages of working toward my second doctorate, I had a chance to remediate that experience by being at my grandmother’s deathbed.  She was always a difficult woman, but she had lost the ability to speak, and in many ways this made things easier for her caregivers.  We knew it was serious and came when we heard she had punched the orderly in the face who was trying to feed her.  I took turns with my mother, sitting by her bedside, as my grandmother, like my brother, was dying of pneumonia.  This time, thankfully, there was no talk of adding a ventilator or heroic measures to keep her alive.  After two weeks, it was a Sunday when she was evidently about to pass away.  The nurse had ordered morphine, but in the UK a doctor had to be called from another hospital to sign for it (see chapter 1 for a discussion of the power of doctors over the dispensation of opiates).  My grandmother was evidently in a lot of pain, although she was unable to use her voice to communicate it, doubly silenced if Scarry is right about the difficulty of putting pain into language.  Finally, the doctor arrived, and I went to her, holding her hand and making eye-contact to comfort her, and said, “The doctor is here, he can give you something to help with the pain.”  I tucked her blanket and went to close the door, so she would not overhear the doctor and my mother talking in the corridor outside.  By the time I got back to the bed, my grandmother had lost consciousness and never regained it.  The doctor examined her and the morphine was added to her drip while my mother and I continued to sit with her, prayer book ready.  But it was the gentleness of that last caring communication with my grandmother which I felt transcended my ordinary experiences, in a way that informs my work with patients in pain.

Healing Through Communication: The Practice of Caring

5.     Healing Through Communication: The Practice of Caring

This is the doctoral dissertation in communication of psychiatric nurse and Professor Carol Leppanen Montgomery.  She laments that “In our culture, caring is viewed as frivolous compared with the real work of curing… Yet each day, a very different form of heroics is shown by those who stand by and care for those for whom technology has failed: the disabled, the chronically ill, and the dying.  Our society shuns these victims, for they represent our failures and loss of control… the efforts to make them create a meaningful existence are also ignored and devalued.” (Montogomery). 

Montgomery relates her personal experience of working as a psychiatric nurse for 22 years.  At the time, there was little or no recognition of the role of caring, within the body of theory, never mind training in it.  Montgomery often suppressed her instincts for compassion in order to stay within the conventional boundaries of practice.  Nevertheless, as she became more experienced, she noticed that the only times she made a real difference to her patients were when she was willing to get involved in a way that mattered to her as well as them.  She notes that in her training, compassion was viewed with suspicion in psychiatric settings, interpreted as countertransference or being manipulated by the patient.  As a nurse, she encountered more medical settings, where compassion was associated with emotionality and loss of objectivity or control.

Montgomery notes that recent feminist theorists (Belenky et al., 1986; Chodorow, 1978; Gilligan, 1982; Jordan, 1989; Miller, 1976; Noddings, 1984; and others) have validated the role of empathy, intuition and subjectivity in healing.  Additionally, nursing theorists Watson, Gadow, Benner, Wrubel, and Leininger wrote in the 1980’s about the concept of caring.  But what is caring?  Montogomery uses grounded theory (Glaser & Strauss, 1967) to analyze the actual communication of caring, both theoretically and within the experiences and reported interactions of 45 health professionals (nurses) whom she interviewed.  She looked at the transformative effects of caring on both the patient and the caregiver, the potential risks of caring and the support needs of caregivers, and methods to promote caring communication in practice and education.

5.1.  Putting the Caring Back Into Health Care

We are living in a time of aging population, in which the mortality rate from previously life-threatening illnesses has decreased, resulting in a prevalence of chronic illnesses that cannot be cured.  Only 10% of patients seen by physicians are cured (Fuchs, 1975).  The other 90% require support and caring to promote their own coping and healing resources, and yet the current health care system and health maintenance organizations (HMOs) devote less and less funding to long-term supportive professional assistance for patients.  The medical model has been useful in treating infectious disease, but only 10% of the improvement in mortality during the 20^th Century can be attributed to medical intervention.  The rest results from better public health efforts, nutrition, and improved quality of life.  The 700% increase in health spending between the 1970’s and the 1990’s produced no striking improvement in health.  The United States is significantly behind other developed nations in the areas of infant mortality, cancer deaths, and circulatory disease (Allan & Hall, 1988).  This is in spite of the fact an attitude of “cure at all costs” prevails, without addressing the problems of human suffering (Watson, 1988; Taylor & Watson, 1989).  The medical model has turned natural, normal life events like childbirth, menopause, grief and old age into medically managed and directed events.  People may be kept alive with no concern over their quality of life (Allan & Hall, 1988).

Gadow (1988) proposes that instead, caring should be the overriding ethical framework of healthcare.  According Gadow, caring is the commitment to alleviate another’s vulnerability.  The exercise of power over another person, even with the intent to cure disease by means of an invasive technological intervention, can actually increase rather than alleviate the vulnerability of the person.  Gadow cites the case of Donald Cowart, a burn patient subjected to excruciatingly painful treatments in spite of his consistent refusals, as an example of how overpowering a person can create a vulnerability “so extreme that no human caring can assuage it”.

There is concern over whether caring can survive the climate of cost reduction in HMOs, that use evidence-based outcome models to justify treatments.  “The economic value of observing, comforting and remaining with clients is receiving considerably less attention and less financial value compared with high technology in medical services” (Leininger, 1986).  And yet, there is increasing evidence that people’s feelings, and their physical health, are related.  In a seminal study of psychoneuroimmunology, David McClelland (Ornstein & Sobel, 1987) found that concentrations of salivary immunoglobulin A, a measure of immune functioning, were increased in college students who had watched a documentary of Mother Teresa of Calcutta caring for the sick.  The presence of caring staff promoted the acquisition of cognitive learning skills among student nurses (Benner, 1984).  Caregivers who operate from a caring mode are, not surprisingly, more technically competent than those who do not.  They are able to perceive subtle changes in the patient’s condition.

Caring is, according to Montgomery, a natural way of being that consists of responsiveness to others, the antithesis of alienation, detachment or apathy.  Her assumption is that caring is “a natural condition of being human”, which she acknowledges as a departure from the psychoanalytic view that “humans are essentially self-serving creatures, driven by aggressive and unconscious forces that must be held in check by reaction formation, repression, and cultural reinforcement (Freud, 1961).” (Montgomery).  Self-serving aggression is certainly part of human nature, but so is an innate responsiveness to the plight of others.  According to anthropologists, caring is integral to our survival and one of the most universal attributes of human culture (Leininger, 1978).  We are a vulnerable species, because as we evolved from walking on all fours the pelvis became thickened and the birth canal narrowed, but at the same time we evolved large heads that needed to fit through it, resulting in a prolonged period of childhood vulnerability that necessitated caring (Ornstein & Sobel, 1987).  Noddings (1984) hypothesized that caring comes from our earliest experiences of being loved and protected, and is a “natural longing for this goodness”. 

This natural state of responsiveness and commitment is not, according to Montgomery, adequate to ensure effective caring on a professional level.  It is not sufficient to have good intentions in regard to patients.  Caregivers must develop the skills to communicate this caring and the commitment to remain involved with the patient in the face of challenges and demands, and not withdraw out of frustration or a sense of powerlessness.

Psychological models of counseling, such as those from the humanistic tradition of Rogers (1951), Carkhuff (1969ab) and Egan (1982) are helpful but limited in providing guidance to healthcare professionals working in a frantic environment (often experienced by psychologists as well as nurses and others) where the client’s intent is to receive service rather than develop a relationship.  The emphasis on communication techniques can create problems, by making communications seem contrived and unsatisfying for bot caregivers and patients.  These techniques, additionally, say nothing to the developing relationship between the caregiver and the patient.

The patient may not be seeking counseling or a therapeutic relationship, but is in a position of vulnerability by virtue of requiring human assistance.  Talking about feelings may or may not be helpful in these circumstances.  Clinicians need to empower clients within the framework of a complex healthcare environment, going beyond technique to respond in a meaningful way to each patient, negotiating the complexity of the caring relationship.

5.2.  Theoretical Foundations of Caring

Montgomery is the first to study caring from the perspective of communication.  She examines systems, relational, and dialectical traditions of communication, looking at the constructs of confirmation and empathy, which are commonly used to understand therapeutic and supportive communications.  She considers the dialectical approach to relational communication, and brings the perspective of feminist psychology to bear on understanding the development of a caring relationship.

Relational communications were delineated by Millar and Rogers (1976) and by Wtzlawick et al. (1967).  They emphasize the relationship as an end in itself, rather than a means to an end involving one or all of the participants.  A communication can be analyzed in terms of the content component of the message, and/or the relational component or command aspect, which refers to how the message is to be taken.  For example, when an admissions clerk asks a patient for her insurance card the content of the communication is clear, but the patient may feel cared for or dehumanized depending on the relational component of the message.  The content is often conveyed through symbols such as words, also known as digital communication, while the relational component is often conveyed through nonverbal means, also known as analogical communication. 

The relationship aspects of communication are less evident in “healthy” relationships, while “sick” relationships “are characterized by a constant struggle about the nature of the relationship, with the content aspect of communication becoming less and less important” (Watzlawick et al., 1967).  Under these circumstances, there is room for metacommunication, which is a communication about communication.  Montgomery states that “One could assume that within the context of providing care, much of the communication will be at the analogical level.  With the possible exception of psychotherapy, the purpose of the caregiver-client relationship is to perform a service for the patient, not to communicate explicitly about the relationship.”  I would emphasize that psychotherapy is only a possible exception.  Even in psychotherapy there is ample room for the non-verbal communication of caring, through gestures, looks, facial expression and tone of voice.

Confirmation is a concept that overlaps with caring.  It was described by the philosopher Martin Buber in 1957:

“the measurement of humanness of a society… The basis of man’s life with man is twofold, and it is one – the wish of every man to be confirmed as what he is, even as what he can become, by men; and the innate capacity in man to confirm his fellow men in this way… Actual humanity exists only where this capacity unfolds.”

Laing (1961), who equated confirmation with love, defined it as the “process through which individuals are recognized, acknowledged and endorsed.”  Sieburg (1973) outlined the requirements for an interaction to be called “confirming”:

“Recognition of the other’s existence as an acting agent

Acknowledging the other’s communication by responding to it relevantly

Congruence with and acceptance of the other’s self-experience

Willingness on the part of the speaker to become involved with the other person”

Montgomery gives the example of Hanna, an Alzheimer’s patient who tried to grab hold of anyone passing by.  While most people avoided Hanna, a nursing student turned this into a confirming interaction by recognizing that her behavior was purposeful, expressing her feelings of fear and disorientation.  When Hanna tried to grab hold of her, the student put her arm around Hanna and invited her to walk together to the lounge area, where Hanna could sit down.  The student repeated this whenever she saw Hanna.  Hanna calmed down after these interactions.

Montgomery criticizes the “psychologistic” understanding of empathy as projecting oneself into the patient’s world and then analyzing that experience based on one’s own knowledge and experiences.  Instead, she quotes Friedman (1974) who said that “The very notion of having experience… robs us of what experience once meant – something which can take us up, take us outside ourselves and bring us into relationship with the surprising, the unique, the other.”  Friedman relates a story about Martin Buber, who once mentioned that he wanted more questions from the lecture audience, not because he possessed special knowledge, but because he believed that wisdom “happens, comes to be in the between”.

Montgomery presents a vignette of a cardiac patient about to enter open-heart surgery, who had previously lived a healthy, active life and was shocked by the seriousness of his condition.  He said, “I’m just no hero, I just can’t go through with this!”  To which the nurse responded immediately, “Heroes are ordinary people faced with extraordinary circumstances, and instead of running away, they stand and face whatever the circumstance is!”  The patient said this communication hit him like a “cold washcloth to the face” and he repeated her statement often to himself.  It helped him get through the surgery, and he continued to visit every year bringing gifts for the nurses and special thanks to the one who helped him.  The nurse, when questioned, had never had a similar experience to the patient’s, nor did she actively project herself into his position in order to come up with this intervention.  She had no need to distance herself and analyze the situation, nor did she have any idea where her words came from.  According to Montgomery, “She allowed herself on some level to become one with his experience and subliminally received from him what he desperately needed to hear.  It was as though her consciousness acted as a conductor to provide the completion of his idea, in the way an electric current will occur if it has a medium to complete its circuit”.

Montgomery discusses the contradictions between empathy, on the one hand, and a sender-receiver view of communication on the other hand.  During nursing training, as with psychotherapy, nurses are encouraged to maintain “appropriate boundaries” and it is thought to be a good thing to practice a certain amount of distance with the patient.  Montgomery talks about the patient and the caregiver as energy fields that merge and interact, and while interacting move separately towards increasing self-differentiation and complexity (growth).  “Empathy, the pattern that emerges from this interaction, is a shared rhythm where formerly two rhythms existed.”

Dialectical approaches to relational communication see a constant struggle between self and other, or between autonomy and connectedness.  It is through this friction that change and growth are thought to occur.  Conversely, feminist theorists dismiss this as the masculine perspective.  Gilligan (1982) claimed that male and female experiences reveal different human truths, “the former of the role of separation as it defines and empowers the self, the latter of the ongoing process of attachment that creates and sustains the human community”.  Noddings (1984) hypothesized that caring is a “longing for goodness”, a way to meet the other morally that comes from our earliest memories of being cared for.  She views empathy as “receiving the other into myself…  I see and feel with the other.  I become a duality”. 

Montgomery concludes that “caring cannot be understood within traditional psychological views of relationships that emphasize distance and objectivity.  Caring professionals, both men and women, educated within this traditional view are apt to dismiss their subjective concerns about patients as trivial or inappropriate, and they may feel the need to keep a safe emotional distance from patients.  Theories grounded in the feminine experience, on the other hand, validate a natural desire to immerse oneself in the concerns of others.”

Philosopher Milton Meyeroff wrote a book in 1971, On Caring.  He outlined the following ingredients of caring, whether for another person, an idea, a philosophical ideal or a community.  Knowing – caring requires knowledge of the other and understanding of their needs, responding to them properly.  Good intentions are not enough.  Alternating Rhythms – this entails learning from one’s mistakes and modifying behavior in response to the other.  Patience – allowing the other to grow, in their own way, giving them both time and space.  Honesty – being open to oneself and the other, accepting them as they truly are rather than how somebody wants them to be.  Trust – this involves faith in the ability of the other to grow and self-actualize, the courage to take risks and “leap into the unknown”.  Humility – Humility is here a willingness to learn from the one being cared for, overcoming the arrogance of being in a position of power and authority over them.  Hope – The hope is that the other will grow though caring, “an expression of… a present alive with a sense of the possible”.  Courage – Courage is required to follow the lead of the other into the unknown, similar to the artist rejecting conformity and creating instead out of personal expression.

Nursing theorist Jean Watson (1989) described caring as a mutual exchange between the nurse and the patient, which at its best during “caring moments” causes the participants to lose track of time, moments that can become turning points in the patient’s healing.

“An ideal of intersubjectivity and transcendence is based upon a belief that people learn from each other how to be human by finding their dilemmas in themselves.  What is learned from others is self-knowledge.  The self learned about or discovered is every self; it is universal, the human self.  People learn to recognize themselves in others.  The intersubjectivity keeps alive a common humanity.”

Diane Gendron (1988) used metaphors from neuroscience and art, to emphasize the role of shared rhythms and harmony in characterizing caring communications and relationships, through the lens of mother-infant attachment and synchronization, and the synchronous interactions of areas in the brain including the limbic system that expresses emotions.  Gaut (1983) examined the semantics of caring and identified the necessary and sufficient conditions that define a caring act: 1) an awareness of the need for care, 2) caregiver knowledge of how to improve the situation, 3) caregiver intention to help, 4) selection and implementation of action, and 5) individually appropriate rather than generic change in the patient.  According to Gendron, the patient recognizes as caring not isolated communications but a complex, synchronized gestalt whole comparable to orchestral music.  Gaut captures the need in caring for competent action, not just expressions of empathy, on the part of the clinician for the sake of the patient.

5.3.  Caring Begins With the Caregiver: Predispositional Qualities of the Caregiver

Montgomery emphasizes the personal qualities that predispose someone to be a caregiver: 1) person orientation rather than role orientation, 2) concern for the human element in health care, 3) person-centered intention, 4) transcendence of judgment, 5) hopeful orientation, 6) lack of ego involvement, and 7) expanded personal boundaries.

A psychiatric nurse gives the following account of breaking from her role in leading a “very routine and somewhat boring” goals group with hospitalized patients:

“When we got to him, he said “well, I don’t have any goals for this week.”  That was not at all unusual…  But unlike how I usually reacted to that kind of resistance, which was “fine, if that’s where you are at, that’s where you are,”… what I started experiencing was not just sadness, but I felt like putting my head on my hands and bawling my eyes out… I turned and I looked at Bob, and tears came to my eyes and I said “You know, Bob, I feel like I’m losing you, and I don’t know what to do.”  He was just incredibly armored and distancing, and… his whole body countenance changed and light came into his eyes and tears came into his eyes, and he kind of clutched his chest and said, “God, I can’t tell you how much this means to me.”…

Well, I think in a lot of ways my role on that team was to provide a lot of structure, and I think sometimes I could go overboard with keeping things safe…  I think we were so freaked out by the fact that people were trying to kill themselves on the unit… I don’t think we were being human about our own fears and concerns about what the patients were doing.”

“While providing structure and keeping things safe was an important part of her role, stepping out from behind this role and allowing herself to be human and to be touched by this man’s despair imparted a healing power to the communication.” (Montgomery)

Concern for the human element of health care is expressed in the following accounts. From a nurse working in the operating room:

“…This body that appears to be lifeless that is only asleep, but you know they are just totally vulnerable… and that you as the nurse in the room are really the person to make sure that vulnerability is never lost sight of because even though the surgeon is operating and the anesthesiologist is keeping the patient asleep, you are the one who is responsible for their whole human integrity remaining intact.”

And from a speech pathologist working with a 4-year old child:

“I can remember taking him into the classroom, he’d just scream and scream, he was just so upset.  And I finally just picked him up and sat down in the rocking chair and just started singing to him and rocking him because it just seemed like he was so scared or so frustrated.  I didn’t know what was wrong with him, but he just seemed like he needed some of that.  And I started singing some familiar songs, and all of a sudden he tried to sing with me.  It was the first time we had heard anything from him that was intentional.  Something went on there, and I’m not sure what it was.”

An occupational therapist learned the importance of person-centered intention from working with a dying child.  She said, “Tomorrow, if someone calls me and tells me that child died, I wouldn’t be as concerned that he learned to feed himself… , but that I knew that he knew that I loved him.”  As a psychiatric nurse, working with a patient with advanced Alzheimer’s disease, says:

“you don’t even have to say all the right things or be all the right things or do all the right things.  My intention is to be helpful and be connected.  I can… make lots of mistakes as far as theory goes and that patient will pick up on that intention.”

All health-care professionals are expected to be non-judgmental, but it can be hard to dispel judgment without a good reason.  A nurse working on an ICU of a public hospital acknowledges that “You’re going to meet some horrible people who are going nowhere, but for the most part, you give everybody a chance and they’re going to give you something back to prove you wrong.  Everybody’s got something nice about them.  Sometimes you have to dig.”

As Montgomery puts it, “While value judgments about clients are usually based on abstract principles of what someone believes is right or wrong, in caring, the relationship is what is right, and this takes precedence over abstract moral principles.  This commitment to the relationship makes it possible for the caregiver to stay involved with and be accepting of clients who might not share the same values or make similar choices.”

A hopeful orientation is essential to give caregivers the courage to become involved with patients, and sustain them during this involvement, acting as a resource for patients who cannot see beyond their own despair.  A rehabilitation nurse working with a comatose patient was able to commit to the hard involved, believing that a miracle might happen, and noticed the first small signs such as eye-movements that indicated the patient was about to wake up.  Eventually the patient recovered and walked.

Sometimes hopefulness requires respect for the patient’s own healing.  For a psychiatrist, caring means “not interfering… so [the patients] are more free to be themselves”.  A social worker on an children’s psychiatric unit talks about the mother of one of his patients, who herself was severely abused and neglected.  “I really have an appreciation of those kind of people, because I don’t understand why people like that haven’t… committed suicide… You turn that around and realize this was an incredible woman.  She had incredible strengths… I can’t help but be in aw of her in some capacity… Part of this business about caring is that you have to look at people’s strengths.”

Lack of ego involvement is essential for caring, because “the satisfaction of caring comes from the caregiver’s ability to go beyond the limits of her or his own ego, to experience another person’s world, or another way of being that is totally different form the caregiver’s” (Montgomery).  Expert caregivers allowed themselves to become part of the background rather than the foreground of the patient’s experience, doing something that was not quite obvious even to them. 

Gilligan (1982) found that the highest level of moral development in women is characterized by awareness of interconnectedness and interdependence.  Expanded personal boundaries are an example of caring for others as much as we do for ourselves.  A psychiatric nurse in a state hospital was punched in the face by a severely psychotic patient.  Before going home to take care of herself, she called a community meeting with the other patients who saw the attack and reassured them that although she was injured and upset she would be coming back, and had no intention of abandoning them.  The nurse experienced post-traumatic symptoms and thought at times she could never come back, but what helped her return both to the hospital and to emotional health was her concern over the effects that leaving permanently would have on the other patients.

5.4.  Caring in Action: Behavioral Qualities

Montgomery outlines eight properties of caring, as it is expressed at the behavioral level: 1) empowerment through the mobilization of resources, 2) advocacy, 3) authenticity, 4) responsiveness, 5) commitment, 6) being present with, 7) creating positive meaning and hope, and 8) competence.

She tells the story of a nurse who helped a priest dying of cancer, who had posted on his door a sign saying “Do not enter unless you absolutely have something specific to do.”  The nurse visited the priest daily for two months, called another ex-priest to visit, and worked with his doctor to contact a sister in another state who did not know how sick he was.  “By the time of his death, this nurse was no longer the focus; she was able to fade into the background, so those people who were most significant in his life could be there for him.”  Montgomery cites this as an example of empowerment through the mobilization of resources.

As an example of advocacy, she mentions a psychologist whose only job was to do psychotherapy with her client, but she couldn’t ignore the fact that the client had no money for food or medications.  She worked with the business office of the hospital to negotiate a loan until the client’s disability check came through.  Sometimes advocacy requires direct confrontation with others, as in the case of a nurse who stood up for the family of a 12-year-old child cruelly injected in the back of her throat while still awake, following a routine tonsil operation that resulted in excessive bleeding.

Authenticity can be hard to achieve when the caregiver simply does not like the patient.  But sometimes authentic, confrontational interactions can lead to better care.  For example, a nurse who refused to raise a patient’s head as he wanted it for the night, because she thought this would damage the skin on his back, threatened to ring the bell for her all night, whereupon she took away the bell.  After this, the nurse and the patient became good friends, and she turned the pages of the book for him while he read.  If she had not initially acted on her feelings in this way, she said, “I’d be angry at myself and him.  You have to be firm and do what’s best.”

Responsiveness involves anticipating the patient’s needs, and humanizing their experience in what are often hectic, crisis situations in a strange environment.  An operating room nurse describes how she talks to pre-surgical patients:

“…I usually make eye contact before they go off to sleep and say at the same time, “you know we are going to be taking very good care of you, you are healthy, and we are going to see you when you wake up in recover,” because I like to reinforce the idea in their minds that I expect them to wake up.  A lot of people come in with an unspoken fear of dying from anesthesia.”

Commitment involves going beyond the call of duty, as when a psychologist spent an afternoon with her client, offering support as she went with police to visit the scene of a crime where she had been brutally attacked.

Sometimes being present with the patient is the most important thing a caregiver can do.  An occupational therapist said, “It took me a long time to figure out that it was okay just to be there.”   A psychiatrist worked with a developmentally disabled woman who did not say more than a few words in about eight months, and “Now she talks a blue streak.”  A nurse manager sat with a dying patients daughter:

“And I just stayed with her and she said “do something, do something!” and I said “What do you want me to do?  Do you really want me to do something to save his life?”  And she kind of looked at me, and I said “You know we can’t do that, there is nothing we can do for him” and she said “Yes,” and I said, “but I can be here with you.”  So she just put her arm around me, and I put my arm around her, and we just stood there, and she held his hand, and it was over in maybe five minutes…  And she came to me afterwards… and she said “The fact that you stayed there helped me.””

An occupational therapist helped create meaning and hope for her patients, children in rehabilitation, by creating a summer camp for them.  The nurse caring for a young man dying of AIDS, rejected and abandoned by his family, said “It’s important that his caregivers really think he’s a wonderful human being.”  A psychiatric nurse working with dissociative patients with a history of severe child abuse stays focused on the human element, where she can find some basis for hope.  One very withdrawn patient who was fearful of being touched recalled in session a painful memory of being forced to participate in the mutilation and killing of a childhood friend.  The nurse made a connection between this memory, and the patient’s fear of getting close to people.  “I mean this girl can’t even touch somebody’s hand, so I encouraged her to try and touch… my hand… after having to work through a memory so horrendous as that,… and she had a very difficult time but she kind of lightly touched.”  In spite of its content, the interaction ended on a hopeful note.

Competence is essential in the practice of caregiving.  An ICU nurse discusses novice practitioners, who get too emotionally involved: “I think that as you get better at being a practitioner of the physical, taking care of the physical aspects of the patients, you can pay more attention to the psycho-social needs…  But that comes with experience and you still have to keep the physical elements as the primary focus.”  An oncology nurse describes her feelings of love and protectiveness toward her patients, that allow her to perform venipuncture with exquisite accuracy, minimizing trauma to their skin.  Benner (1984) wrote about how caring seems to be an important part of the attention to detail required to practice expertly in technical fields.  The speech therapist who sang to the child, in the earlier vignette, learned a new theory – sensory integration – that helped her understand why her intervention was helpful, but she learned about it through practicing it first, through her relationship with her patient.  An occupational therapist talks about how caring leads to knowledge: “There is that tangible feeling of caring, all of a sudden you are thinking more globally, and you’re thinking more elegantly in some way, and therefore the decisions are made because to not respect the process… feels annoying.  It feels incomplete.”

5.5.  Caring Unfolds With the Client: Relational Qualities

Montgomery describes the manifestations of caring that unfold through the development of the caring relationship, and depend on the individual personalities of the caregiver and the patient and how they relate to one another.  She summarizes these relational qualities under the headeings: 1) deep emotional involvement, 2) self-awareness and purposeful use of self, 3) intersubjectivity, 4) aesthetic qualities, and 5) transcendent qualities.

Caregivers see caring as a “deeper expression and deeper relationship of yourself with somebody else.”  Many of those interviewed became teary or cried openly while telling their stories.  A counselor said, “these people have broken my heart, softened my heart, and broken through a lot of my pride.”  Caregivers often used the word love when describing their feelings towards patients.  An occupational therapist explained, “They used to tell us, if you got too involved with the person it isn’t good therapy.  I think the reverse is true.  If you’re not involved enough, it’s not good therapy.”  Other words used included bond, intimacy and connection.  The psychologist who visited the crime scene with her victimized patient said, “sometimes you have to match the courage of your patients”.  She believed in the value of being authentic, especially with those patients who may have never experienced a healthy relationship.

The nurse mentioned in an earlier vignette, who cried while she was leading a therapy group on an inpatient psychiatric unit, described her self-awareness:

“I found myself holding my breath and going “Holy Toledo!”  this is a really strange reaction.  So I decided to find out whether or not it was in fact some kind of countertransference on my part, so I kind of opened up my body and started scanning the group to see if this had affected other people… And so all of a sudden it really hit me that this was the theme for the group, it wasn’t just my experience with Bob.  And so I decided to go ahead with what I was feeling, and… I didn’t do what I instinctively wanted to do which was sob, but I looked and I said to the group, “You know I’m just having a real strong reaction to something that is going on in the group and I feel like I need to deal with it”, and so I turned and I looked at Bob, and tears came to my eyes and I said, “You know, Bob, I feel like I’m losing you and I don’t know what to do.”

The nurse observed her intense emotional response, and rather than detaching herself from it she examined her feelings in the broader context of the group, and matched their needs with a purposeful expression of her own sentiments that was meaningful to them.

Montgomery conceptualizes intersubjectivity in terms of the lasting effects that patients have on caregivers.  A social worker working with troubled children and families said, “I have learned a tremendous amount from these people… and you can’t help but change yourself…  I have always felt like if I don’t go into therapy with someone and come out a different person, it’s a signal that I probably need to really take stock and move out of the arena of mental health.”  Some caregivers share this with their patients, for example one nurse said, “I was able to share how I felt about how they were affecting me.  Like Pat, to be able to tell her, ‘I really have enjoyed taking care of you.  I enjoy you as a person.  You have meant a lot to me.”  Another says, “This is my life too and they are impacting on my life.  I don’t want them to not know that they are a part of how I live and how I feel even though in this instance their needs are why we are there.”

Some patients reciprocate these feelings intersubjectively, by expressing their gratitude and appreciation with words of thanks, gifts, or in more subtle ways.  A nurse working with a largely non-verbal woman dying of cancer said, “She could never say things like… “thank you” for anything… That’s just the kind of person she was.  And I get very insulted with some people when they don’t say that but it didn’t matter with her because she… gave us… a lot in her nonverbal communication with us.”  Six weeks before she died, the nurse, volunteer and home health-aide brought this woman a cake and streamers for her birthday, and she came alive, telling funny stories about her childhood.  The nurse felt that the patient had understood how much they cared about her.  An occupational therapist said, “The involvement is to love and to care without expecting anything back, and to feel yourself as kind of a conduit.”  A rehabilitation nurse said about her work, “It seems like the right thing to do.  That is your satisfaction.  It’s its own reason for doing things.”

Recalling Gendron’s metaphor of orchestral music, many caregivers sense aesthetic qualities in their work.  An occupational therapist described her work with children at a summer camp, “It felt good.  It felt easy.  I was a part of something that was beautiful.”  Another felt that “It is a dance, between me and the child… True therapy is an art, a blend of science and art… Otherwise you might as well be working on an assembly line at General Motors.”  A physical therapist described working with a 4-year old quadriplegic.  She started by looking in his eyes, and could tell that “his fears were overwhelming.  Earlier in her career, she said, she would have focused on what she needed to do and “if he screams or yells, that’s normal.”  Now, instead, “Just sitting there and touching parts of him where I know his sensation was intact… very lightly touching those areas until I could get some trust, and it was clear that when he looked at me, when I told him what I was going to do, that it was okay… I could judge what was okay and what wasn’t okay.”  An occupational therapist said, “I’m working with a kid, and it becomes this improvisational dance where the treatment objectives are the things that we are both going towards, and the kid and I are playing in such a way that we are moving towards those… and you are drawing upon all of your resources… It becomes very artful.”

Montgomery describes the transcendent qualities of the relationship when “caregivers, by entering into the world of another, allow themselves to become part of something greater than themselves.”  A nurse said that she has the opportunity to “experience a thousand different lifetimes through someone else’s eyes”.  A psychiatrist working with severely retarded adults said, “there’s spirit in every one of these people”.  A nurse observed:

“Spiritualness is important… it comes from a deep sense of ministration to the individual.  You minister to the spirit within the body.  Sometimes you will not even recognize the person outwardly because of the deterioration.  You minister to the spirit…  I wasn’t aware of that 20 years ago, and I think for many nurses it’s dormant.  Nursing has helped me to discover that.”

Another nurse said: “I feel tremendous love for a patient and I feel that they genuinely love me and it seems like it comes from some sort of higher place, that it’s driven from… a nurturing place that I think is kind of beyond myself.”

5.6.  Caring Is Contextual: The Health-Care Environment

Montgomery describes curing as “an individual accomplishment in which the helper succeeds by achieving mastery over a client’s problem.”  Caring, in contrast, is a “participatory act” empowering the patient to heal or solve the problem through the use of their own resources.  The caregiver or caregivers participate in the experience with the patient, instead of trying to control its outcome.  The context in which this communication of caring takes place is an integral part of the experience.  Contextual factors include the healthcare environment itself, and the participation of the caregiver in a team of clinicians, professionals, and others. 

Montgomery emphasizes that, in situations of crisis such as an emergency room or other intensive hospital settings, trust is immediate and instinctive.  An operating room nurse describes this aspect of caring:

“…a man… in his late 60’s… came to the OR knowing he was going to have cardiac bypass surgery… I make it a practice… to take hold of the patient’s hand as they are going to sleep and just ask them if they have a vacation that they can remember that they would like to take again or some place they would like to be in that they can hold in their mind as they are going off to sleep.  And what he said… was, “Actually, what I really could use right now is a hug,” and so we, the anesthesiologist just stopped doing anything, and I said, “Absolutely, that’s one of the free things that you get as part of your hospitalization here” and bent over and hugged him, and that was a prolonged thing…  And clearly it was exactly what he needed because after that there was no longer any tension in his face [or] even nervous twitter he had been doing since the moment he came into the room.”

Sometimes the intensity of the situation can enhance the power of communication.  A 4-year-old boy with lymphoma who was not responding to treatment became mute and withdrawn, and had not spoken since he was admitted to hospital.  The doctors were afraid they were going to lose him.  A nurse says:

“… he wasn’t my patient, but I went by his room and saw him laying there, and I don’t know how I knew this, but something said to me that he needed to be held right then.  I asked him if he would like to rock in the rocking chair, and of course he didn’t answer but he did not resist when I picked him up.  We sat in that rocking chair for an hour and a half, and I could feel him settling in.  I had on this knit sweater with a print, and when he finally sat up I laughed and said “Jason, you’ve got waffles on your face!”  He said “I know, I’ve got them on my knees too.”  That was the first time he spoke…”

After that, the child became more talkative, showed more energy, and began to respond to the treatments.  Many people, especially children, seek comfort in the evening, and the nurse responded from her heart to some subtle change in the child because she had been living with him for 8 to 12 hours a day.

According to Montgomery, “caring is not an individual achievement but a communication that arises spontaneously from its unique context.  It is most likely to emerge from within a web of caring, a context that is characterized by connection and concern.”  An occupational therapist working in a hospice setting noted that “there were some really beautiful things that the staff did for each other, to support each other.”  Later, working in an outdoor program for handicapped children, she observed: “We all were definitely lifted up by the experience that we had…  And we knew that each of these kids had had some kind of magical experience, and that something important had been seeded from that experience.”  The culture of the workplace was characterized by humor, play and tolerance for diversity, making people “able to reveal their basic kindness.”

It is not only this aspect of mutual emotional support which is important in the healthcare team.  It is important that the team values the patients, and caring for them.  What made it possible for the nurse to rock the child with lymphoma was the support of a well-staffed hospital that trusted her intervention, and filled in for her while she was doing it without her even having to ask.  Sometimes caregivers feel that they are “prevented from caring” when medical decisions are made that do not seem in the patient’s best interest, such as continuing expensive, painful procedures or withholding the truth about a patient’s condition.  Patients can die needlessly when this lack of support occurs, through poor communication among nurses who feel isolated or between nurses and doctors.

When patients respond to caring, they can help create the context in which the caring takes place.  A psychiatric nurse recalled working with a patient in the back ward of a state hospital, while she was a student:

“This woman was curled up, very depressed, very chronic looking, and I would just kneel in front of her… and blather on about “I’m a student nurse” or whatever, and the thing that was so wonderful about it was that I did make a difference… She began to nod her head in response to something I would say, and then she began to talk, and refer to me by name, and the last day, she walked me to the bus as I was leaving.”

Montgomery points out that “Patients who have the ability to participate in a caring relationship and are able to transcend despair by finding meaning are a source of inspiration to caregivers”.  One of the nurses she interviewed said that “My patients have taught me my philosophy of living and dying.”

5.7.  The Distinct Nature of a Professional Caring Involvement

Sometimes becoming overinvolved with patients, trying to rescue or control them, can lead to diminishing rather than enhancing both the caregiver and the patient.  Montgomery writes that “Traditional professional socialization teaches us to avoid these dangers by keeping our feelings out of our work and by maintaining a safe personal distance from clients.  This attitude, however, devalues caring… and removes the caregiver from the emotional satisfaction that is inherent to meaningful involvements.”  In this chapter, Montgomery reviews the skills with which caring professionals express the relational qualities of caring (section 5.5) and avoid such overinvolvement.

The psychologist who visited the crime scene with her client says, “To me the intimacy stuff that gets you into trouble is in a whole other category.  If you were to look at theory being box one, two is… where you leap in and maybe use more of yourself, … and three is getting into trouble because you’ve left theory and judgment behind.  That leaving theory and judgment behind seems real far away from where I’m at.  There’s a humanity that one has to have in this kind of treatment.”  Caregivers can enter the patient’s world without being ‘sucked in’ because they have access to a therapeutic perspective (not objectivity) by bringing to the situation their professional knowledge and experience.  One can connect with the ‘human center of the person’ (Watson, 1988) rather than their traumatic experience, as the nurse described in section 5.4 showed.  Sometimes the patient’s problems are beyond the limit of what the caregiver can support, as when a physical therapist referred a patient who came to her for shoulder-strengthening exercises but turned out to have multiple problems living with his disability, while she continued to work with him on strengthening the shoulder.  Montgomery suggests the caregiver ask themselves, “What about this person’s condition do I need to distance from so that I can stay connected with him or her in the right way?”

According to Montgomery, “caring means being willing to give up the role of hero, to be in the background rather than in the foreground of the experience…  The caring skills require that caregivers be willing to have the spotlight shine not on them or on their skills, but on the patient.”  An occupational therapist said, “The real goal is to let the child go and to know that they may not even look back, but the benefit they’ve gotton from therapy is there… when you let go you’ve still got it all anyhow.”

Montgomery sees the role of the caregiver as orchestrating resources, rather than being the patient’s most important resource.  This kind of relationship is empowering for both the patient and the caregiver.  When caregivers experience the transcendent powers of caring, they can express their love freely without fear of becoming too involved with the particular patient.  Caregivers learn to recognize the rhythmic patters of the relationship on an emotional level, distinguishing them from the feelings of awkwardness, discord and disharmony experienced when the relationship is ‘not right’.

Caring occurs in a contextual web of relationship and connection, rather than in isolation.  Caregivers draw both from the support of a team of professionals, and the emotional support of family and friends, as well as from their own personal history, whether this is healthy and supportive or a disadvantaged history that engenders special empathy for their clients and from which they draw positive meaning.  Montgomery cautions that “When a caregiver believes that he or she is the only person who can help, that caregiver has become removed from context… expert caregivers always perceive themselves in connection with others and manage to create some context to support their caring.”

Montgomery uses the term expert caregiver, based on Pat Benner’s (1984) theory of skill acquisition in nursing, based on the Dreyfus model.   Changes occur in three areas: “The first is a movement away from a reliance on abstract principles to the use of past experience to solve problems.  The second is a change in perception from seeing bits and pieces of information to seeing a complete whole in which only certain parts are relevant.  The final area is a movement from detached observer to involved performer.”  The novice learner relies on concrete, objective attributes of the patient’s condition to select among rules and procedures.  The advanced beginner moves from rules to thinking about guidelines.  The competent learner organizes and begins to master the major activities of nursing, but not necessarily the subtle aspects.  The proficient learner can see the whole situation and recognizes patterns based on experience.  Finally, in the expert, there is a transformation beyond rules to ‘a new way of knowing’ which includes intuition.

The narratives in Montgomery’s book come from expert caregivers.  She notes that while caregivers who are new to their particular discipline may have life experiences that enable them to access the kind of caring described, the book alone is no substitute for an individual mentor or team.  She cautions that certain patients will challenge caregivers, especially beginners who lack the skills and experience required to connect with the patient’s inner spirit, rather than their symptoms or problems.  Patients who are “so removed from their own humanity that they do not know the experience of an authentic relationship… may try to draw the caregiver into their world in destructive ways”.  She adds that, “All of us may need the guidance of a mentor, a team, or personal counseling to help us continue on our own journey of self-development and self-discovery.”

5.8.  The Transformative Effects of Caring

Montgomery describes the effects of caring on the caregiver: “Caring seems to have an alchemical quality, an energizing effect on the caregiver that might be described as a peak experience, one that creates meaning and reinforces commitment.”  The nurse who cried in the group with the suicidal patient said she felt “more alive” afterward.  A nurse caring for a patient dying of AIDS said this was “the most powerful, the most uplifting, the most complete experience… I felt exhausted and depleted but with a sense of peace and accomplishment.”  A psychiatric nurse said, “You begin to believe that there’s some magic to you… if you really believed that there wasn’t magic… you wouldn’t take risks.”  One nurse said, “you enjoy life more.”  Another said, “I think I’ve learned an awful lot about me… where I think I was always shy and quiet and withdrawn… I think I’ve had to find out who I am and learn to talk to people.”

Caring is a self-reinforcing activity, it is energizing and makes caregivers want to care more.  It does not cause feelings of depletion or burnout.  One psychologist said that by allowing herself to care deeply for her clients, she is able to cope with her work, because she has access to the emotional catharsis.  She says, “If I was clinically detached it would be harder.  I can distance from the horror of it by allowing an emotional response.”  An oncology nurse says, “I don’t think caring causes burnout.  I think it prevents it.”

Caring has positive effects on the patient, inspiring self-caring, healing the violence of loss, and promoting self-integrity.  A psychologist says, “I can get 120% out of treatment with patients when I go that extra mile… When I model that behavior, they can reach down and they can risk being honest.”  In the group where the nurse cried for the suicidal patient, another patient told her psychiatrist, “the turning point for me in knowing that you guys cared about me was that one group that Kate reached out to Bob and showed him the way.” 

The loss associated with death or abandonment is a violent experience, according to Montgomery, because it severs connections with others.  Caring helps reestablish a sense of connectedness, what one nurse called a “feeling of peace”.  The child traumatized by his hospital treatment for cancer regained a connection with others and started talking. 

A counselor working in a residential facility had to stay overnight with the patients, and one patient became really aggressive and refused to leave.  When she woke in the morning she found a schizophrenic patient she had previously seen in individual therapy, who was constantly hallucinating, sitting outside her room.  She recalls, “I asked him, ‘why are you sitting here all night, you must be really tired,’ and he said, ‘because I want to make sure you’re okay, and I’m protecting you.’  And my heart just broke. I mean it just broke, and then from then on I knew that even somebody who is really… schizophrenic, he was still hallucinating, he still had… a sense of caring.”  Through all his fragmentation, her caring had allowed him to gain some self-integrity.

5.9.  The Emotional Risks of Caring

Montgomery recorded the narratives of caregivers who had negative experiences associated with caring, to understand the things that can go wrong and learn how to prevent or minimize these problems.  Caring carries emotional risks, as caregivers must approach patients from the awareness of their own vulnerability.  Some caregivers experience emotional distress, and need to withdraw emotionally from their clients.  Montgomery found that such experiences fell into the two broad categories of personal loss, and emotional overload.

As one interviewee put it, “Every time you get involved with somebody, you risk a lot.  You stand to lose something.”  All caregivers felt personal loss and emotional pain with the grief of losing a patient, but in most cases this was part of a larger experience that was found to be personally enriching.  This was not always the case.  One nurse who became involved with a dying child felt devastated, and started to keep an emotional distance between herself and her patients:

“Each time I let someone like that come into my heart, when they die, it’s just like I close off even more, it’s just like, okay, I’m going to do what I have to do.  I can feel sorry for you but that’s it, you know, when you die you are gone.  I won’t even remember your name.”

Another nurse was devastated when he heard a patient he had come in to help style her hair at the weekend, before surgery, had died.  He said, “Now I come to work and I feel that I’m just here… I don’t have that little spark any more.”  One nurse was declared disabled after being diagnosed with posttraumatic stress disorder following a gruesome death. 

Emotional overload or depletion occurs when the caregiver’s human sensibilities are overwhelmed by exposure to trauma, loss and suffering.  One nurse claimed, “I feel like in 6 years I’ve probably aged 20 or 30 years, and I probably have seen more in 6 years as far as human nature and the basics of human life, more than most people will ever see in a lifetime.”  Emotional overload sometimes occurs when caregivers are stretched beyond their limits.  The nurse who detached from her patients after a child’s death said, “It’s kind of like, unlike the parents who can continue to mourn over this person that they lost, you have to pick yourself up, go back into that unit, and take care of somebody else’s child who wants you to feel pretty much the way you did about that other kid.”

Montgomery hypothesizes that the difference between the caregivers who feel enriched by their experiences, and the ones who feel a need to detach after the loss, depends on the meaning they make from the experience.  This meaning depends on the caregiver’s history and past experiences, as well as the context in which they work.  For example, the nurse described in section 5.3, who took the trouble to explain to the other patients in a residential psychiatric facility that she would come back to work after one she was assaulted, received support from a special assault team on which she later served herself.  She learned to look back on the assault as in some way a positive experience that allowed her to grow and expanded her sense of caring.

5.10.      Coping With the Emotional Demands of Caring

Spiritual and philosophical resources sustain and are in turn nourished by experiences of caring.  One nurse talked about her work with dying patients:

“As long as you remember people, they never die… We sometimes avoid being attached to people in this business because we are afraid of the pain.  But there is a lesson to be learned from that, and it isn’t just pain we should be looking at.  It’s the quality of the relationship… and sometimes you can’t have one without the other.  And I’m not tearful because I’m sad, that’s not it at all.  Sometimes I think tears are a sign of fullness, and when you overflow, you overflow.”

In contrast, the caregivers who had negative death experiences rarely expressed such philosophical and spiritual conclusions.  The nurse who detached after the death of a child said, “I still think so much about Judy… just little things, you know, teaching her something and my heart just wrenches, and… each time it does my resolve gets stronger and stronger that I not allow myself to go through that again.”  The nurse who lost ‘that spark’ after a patient’s death remarked:

“Well Kubler-Ross’s theory is that death is just basically one of the most wonderful advancements in life and you go through all these neat little channels and changes.  How can it possibly be so neat?  You know.  It’s like, let’s get real.  You die, you die… How can you possibly be at peace with the end of your life?”

This nurse could find no meaning that might allow him to move beyond feelings of loss.

Caregivers must possess the dialectical flexibility to be sensitive and responsive to their patients at times, and at other times to advocate powerfully and assertively on their own behalf as well as for their patients.  Ideally, caregivers know when to relinquish control of the situation to the patient, so that they can express their own power and autonomy, and when (especially in emergency situations) the caregiver needs to be in complete control.  Sometimes the reality of a situation, or the context of the healthcare setting, is far from ideal, and the caregiver has to balance doing the best they can in that environment with trying to change it or move away.  Those caring for patients in critical, emergency situations need to learn to balance their view.  The nurse who had posttraumatic stress following a patient’s death realized, “You have to sometimes limit the amount of responsibility that you are willing to take on… God didn’t save him so why should I think I should have been able to?”  Irving Zola told of a doctor who saw his work as pulling endless people out of the river.  Finally, he realized he had to look upstream and see who was pushing all these people in.  In the same spirit, a burn nurse became involved in public education about burn prevention, and consulted with a company making burn-care products.  Being able to laugh, even “sick” humor, can help relieve tension and prevent emotional overload.

It is doubly important for caregivers to work in a supportive environment, because we live in a broader society that devalues caring.  Our society values self-reliance, separateness and autonomy, and caring is a “cultural embarrassment” since it not only violates these values but highlights the inevitable moments in life when they are not available.  One social worker lamented, “A war has been declared on women and children and those who work with them.  It’s hard to take up a career that’s so devalued.”

The context of care for a particular patient dominates the feelings that emerge in the relationships surrounding that patient.  The nurse who felt uplifted after caring for a patient who died of AIDS in a supportive team environment also felt diminished and disappointed when her efforts to seek help for a Hispanic patient were dismissed by a doctor who did not want to be called again, ultimately leading to the patient’s early death.  Sometimes the use of technology seems centered around the heroic efforts of clinicians, rather than the needs of the patients, and in such circumstances nurses find they need to distance themselves, as they can be required to carry out risky procedures that cause the patient hurt as well as possible harm.  The nurse with posttraumatic stress disorder had carried out a procedure that while medically necessary caused a violent reaction in the patient that led to his death.  After he died, she felt no one would listen to her, and she felt as though other people on the team were avoiding her.

Streamlining in hospitals often means that ICU nurses never get to see the patients who have recovered.  Society isolates those who are sick and dying, often together with the ones who care for them.  This can be avoided by structuring the care of patients around supportive teams.  A nurse recounts her experience of positive support:

“I was there one night when one of our other leukemics… got aspergillus in her lungs.  It’s this really horrible infection that can just eat you out apparently.  And she coughed up a big chunk… It was amazing and the nurse who was taking care of her was pregnant and we were all feeling protective toward her… we of course didn’t expect her to go into the room afterwards and clean it up… It was just a real upsetting, horrifying thing the whole night and there were people out in the hallway just sliding down the wall, sobbing and it was the people who were more on the periphery of being in love with her went in and took care of all those other things and let those people have their crying time and their recovery so, you know, we could all get on.”

Some patients make it hard for their caregivers, and this can cause alienation and burnout.  As one caregiver said, “You feel alienated because you try, you give yourself, and they don’t want it.”  Another said that when patients “shut you out” she “would take it personally.”  Other caregivers see this kind of patient as a rewarding challenge.  “There are people who just want you to leave them alone, but 99% of the time you can get around that.”  Another nurse said, of a patient who “expected to be treated like a VIP”, “She was very assertive.  I was impressed!”  Developing the capacity for self awareness and authenticity helps caregivers as the vulnerability shifts back and forth in forming a human level connection with their patients.

When patients are able to make meaning from their experiences, this can help caregivers too.  A nurse who had herself been treated for cancer allowed herself to become close to a patient dying of cancer because “I kept putting myself in her place, but because she was so loved by everyone, the feeling was a good feeling.”

Sometimes it can be challenging to connect with patients who are themselves in deep despair.  A nurse struggled to find meaning, working with AIDS patients who were not prepared to die:

“Once you can talk about death and get it out in the open, I think nurses feel a relief and a transcendence, a feeling that I can help you to get through this… [When] my job is just to help with the physical things… very gruesome physical things… I don’t get anything back.”

A social worker talked about how his hope was sustained by a desperate adolescent patient he had worked with 8 years previously, who at the time was brought to him in shackles after he had beaten his mother to a pulp and destroyed property.  The young man took the trouble to contact him and let him know he was ‘doing all right’, when the social worker had been sure he was so violent that by then someone would have killed him.

Montgomery stresses the importance of making available to caregivers education, counseling and mentoring, as they enter the world of another during a perilous time, the help them develop the internal resources to meet the “personal and emotional challenges of caring.”  She writes, “Those who take the risk to get involved have the privilege of bearing witness to some of life’s most sacred moments, for there is nothing more significant than the triumph of the human spirit in the face of breakdown and tragedy, or the actual transition of the spirit from life to death.”

5.11.      Implications for Practice and Education

There is a need to promote the value of caring communication, because caring has got lost amidst a technological, professionalized medicine.  Montgomery emphasizes the role of caring and communication in healing, establishing and maintaining the relationships necessary to reestablish one’s inherent wholeness and harmony.  Montgomery’s experience conducting talks and workshops on caring has shown her the degree to which this “way of being is suppressed by professional socialization.”  She talks about the need to reestablish caring as a moral value, not only expressing the qualities considered by feminist theorists as devalued because of their femininity, associated with compliance or submission, but more so as coming from the authority of the context provided by each unique relationship.  Montgomery emphasizes that caring is “always a conscious choice, it is an act of self-actualization rather than of self-sacrifice.”

The vast majority of caregivers need only permission to have the feelings associated with caring, instead of being trained to suppress, control and regulate them.  In this effort of control, caregivers use subtly and less-subtly dehumanizing terms for the patients and their actions, such as manipulative, demanding, noncompliant, resistive, and regression.  Montgomery notes that it was only when she saw a sign tagged to a patient’s bed, “Mrs. Garcia prefers to sit in a chair for meals,” that she realized the subtle indignity of “Get the patient up for meals.”  She admits that she herself has changed through the process of conducting her research, leaving her with “a tremendous respect for the quiet wisdom that comes to caregivers who let their heart and soul become engaged in the process of providing care.”  This knowledge lives not in a body of theoretical abstractions, but in the reality of those caregivers who are “living caring.”

Montgomery’s book ends with a list of guidelines to prevent becoming involved in a destructive way.  These are questions she suggests that clinicians should ask themselves, in order to sort out the nature of their involvement with patients, in addition to seeking help from mentors, counseling, and psychotherapy, and seeking out “methods that encourage ego transcendence and compassion” such as discussion groups, meditation, and therapeutic touch.  These guidelines are listed in the Appendix.