164 JCN/Volume 30, Number 3 journalofchristiannursing.com

Gail E. Pittroff, PhD, RN, is an Assistant Professor at St. Louis University in St. Louis, Missouri, and a Commissioned Lay Minister in the United Church of Christ. She has experience in ICU, maternal newborn, hospital administration, hospice, and inpatient palliative care.

The author declares no conflict of interest.

Accepted by peer review 1/9/13

DOI:10.1097/CNJ.0b013e318294e8d3

By Gail E. Pittroff

Humbled Expert: An Exploration of Spiritual Care Expertise

ABSTRACT: This interpretive phenomenological study explored how inpatient palliative care nurse consultants provide spiritual care and how they acquired these skills. Humbled experts describes the nurses’ personhood and spiritual care practices, offering insight for skilled spiritual care in any setting.

KEY WORDS: chaplaincy, end-of-life, nursing, palliative care, spiritual care

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journalofchristiannursing.com JCN/July-September 2013 165

component of quality end-of-life care, yet there is a paucity of research on spiritual care in the inpatient setting at the end of life. The purpose of this study was to better understand how inpatient palliative care nurse consultants provide spiritual care and how they acquired these skills. Additional aims included discovering the personhood of nurses providing spiritual care for dying patients.

A purposeful sample of 10 experi- enced palliative care nurse consultants working in inpatient palliative care in the Midwestern United States were recruited for two recorded semi structured interviews to produce 20 transcripts. Institutional review board approval was obtained from the author’s institution, and informed consent was obtained from all partici- pants. A historical self-awareness, nurs- ing process, and expertise in practice interview guide were utilized to obtain narrative data (Benner, Tanner, & Chesla, 2009). Transcripts were decoded, checked for accuracy, and analyzed by the primary investigator (PI). Themes were identified by the PI and verified by a team of experi- enced interpretive phenomenological researchers as well as validated by participants.

Interpretive phenomenology, which seeks holistic understanding and illumination of phenomena, was the methodology used for this study. This is an appropriate research method for examining the everyday practice and skill of providing spiritual care. As nurses presented narratives about caring for patients and families at end of life, they described the lived experience of providing spiritual care in concrete situations where meaning and shared experiences were uncovered and skills and practices explicated.

A CHORUS OF HUMBLED EXPERTS

Ten female nurses actively employed as inpatient palliative nurse consultants participated in this study. They had a median age of 54.5, with 31 median years in nursing and 6.5 median years of palliative care experience. Two of the nurses worked in urban settings, four in suburban, and four in rural settings.

Lord, make me an instrument of your peace. Where there is hatred, let me sow love; where there is injury, pardon; where

there is doubt, faith; where there is despair, hope;

where there is darkness, light; and where there is

sadness, joy. O Divine Master, grant that I may not

so much seek to be consoled as to console; to be

understood as to understand; to be loved as to love.

For it is in giving that we receive; it is in pardon-

ing that we are pardoned; and it is in dying that

we are born to eternal life. Amen

Saint Francis of Assisi

predicated on being humble; humility is essential for providing care and com- fort. “Humbled experts” represents the personhood and spiritual care practices of the palliative care nurse consultants interviewed for the study. Although this study focused on inpatient pallia- tive care, nurses in any setting can learn much about spiritual care from the nurse participants.

Inpatient palliative care is a rapidly exploding field of study. Caregivers in palliative care seek to understand the problems and challenges of end of life through research, which provides evidence for the best care of patients and their families. Spiritual care is a key

EXPLORING SPIRITUAL CARE EXPERTISE

S aint Francis of Assisi, medieval, mystic, and monastic, com- posed this famous prayer of poetic paradox (Tyson, 1999).

The word paradox literally means something contradictory or opposite of what makes sense, yet represents truth. Humbled experts is a paradoxical theme that emerged through a study of pal- liative care nurse consultants and their spiritual care expertise (Pittroff, 2010). Expertise in professional healthcare often is in contradiction with humil- ity. Yet, in the context of spiritual care at the end of life, nursing expertise is

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166 JCN/Volume 30, Number 3 journalofchristiannursing.com

transcendent meanings and concerns. Through the practice of ordinary acts of nursing care, clients can experience, in their last moments on this earth, the very mystery of our existence. Religious parlance would speak of this as partici- pation with an “experience of the redemptive activity of the Mystery at the heart of things” (Dykstra, 1999, p. xi).

Many of the nurses testified with conviction about a reinforcement of their spirituality, mutuality of care, and mystery of human existence they experience while attending to the spiritual needs of others. Cindy had direct personal and professional experience with loss and the redemptive nature of spiritual care inclusive of God, self, and others. She highlighted the void that exits when spiritual concerns are dismissed and death is denied:

PI: You mentioned feeling excluded from your grandmoth- er’s funeral when you were young. What other experiences had an impact on you?

Cindy: I’m a cancer survivor myself. We’ve had a lot of cancer in our family, so I’ve experienced a lot of death as an adult in our family. I think that’s why I initially was asked to participate in putting our palliative team together here at the hospital. People knew my experiences... they thought I’d be good at it, and my past experiences have helped a bunch.

PI: How would you say it’s helped?

Cindy: Well, I’ve had surgery, chemotherapy, radiation. I understand the side effects, the feelings, the anxieties, and the fears. I think that just helps me relate to patients and the families… My illness also strength- ened my faith, because I had a lot of prayer at that time, I was baptized at that time. So I think I kind of went through a transformation during my cancer treatment that increased my faith and strengthened it.

PI: So you relied on your religious beliefs and the rituals that you’ve learned as a Christian?

Their educational levels included two associate, five bachelors, and three masters degreed nurses. Every nurse reported active participation in a faith tradition; nine Christian and one Unitarian Universalist were repre- sented. Pseudo names were assigned to the nurses to protect anonymity.

None of the participants reported receiving education in spiritual care in their basic nursing education, especially at the end of life. What little knowl- edge they did receive was just the “tip of the iceberg.” Bev, when asked if she had received spiritual care training in nursing school, said, “No absolutely not, oh wait I take that back, we had a lecture on the five stages of grief, one lecture, that was it.” Melissa saw spiritual care as part of the holistic model of caring in all settings and said:

Nurses provide spiritual care all the time, but not formalized like a chaplain would, but they do and sometimes we don’t even realize that were doing it. It’s part of our overall nursing care that isn’t defined as spiritual but it is.

All participants had continuing education in spiritual care through conferences or personal study. How- ever, it was largely through their personal life experience, participation in a faith community, and evolving nursing practice that they learned to recognize and offer an alternative to spiritual suffering. All had experienced loss, some through personal illness and many through family illness and death.

The following excerpts represent the notion of humbled experts. The opportunity to provide care at end of life was described as a “gift” and the role of providing presence, support, and spiritual advocacy as “honor and privilege.” The capacity to provide care of this nature is related to the nurses’ own experience of suffering and loss, growing spiritual awareness, and learned ability not to judge others. The experience of being with people undergoing loss and death creates a context of hospitality, invitation, and mutuality of care. These experiences also have enlarged the nurses’ own perspectives on life:

Jane: People very much invite you into their lives… As I arrived she took her last breaths…this was the end of an ongoing relationship with many difficult decisions being made… I looked upon this as a gift… Her death was very peaceful and I was able to be present…It’s an honor to be part of that.

Melissa: The patient had just died…the daughter was screaming on the floor, so I got on the floor with her and tried to support her. I spent a lot of time with her, not always saying anything, just being present with her, holding her hand. One of the physicians said to me, ‘That’s not your job…’ I’m thinking, it is my job, that’s part of palliative care, to support the family, that’s really what the nurse does, you know, and it is spiritual.

Vicki: I have learned not to be judgmental of people and to accept people for who they are. Before this, I took care of patients in their homes…I saw people with nothing, dirty homes, very sad situations, high illiteracy rates… Gosh, when you started talking to some people, victims of sexual abuse and incest, I wasn’t even aware of that… I was really sheltered. Working in hospice and palliative care was eye-opening for me, because you go home humbled every day from that. You think I’m so grateful for my family and what I have.

Lucy: Looking back on my hospice experiences made me realize that you can’t be judgmental. Every family is very different, there isn’t a right way and a wrong way, it’s just their way. The biggest piece is trying to put yourself in their shoes…and saying to yourself, if this was me, and I were in this situation, what would I want to hear?

Invitation, hospitality, support, presence, nonjudgment, and the recognition of gift and grace represent the etiquette these nurses embody while providing spiritual care. Benner et al. (2009) call this “ethical comportment,” an attribute of agency in expert nursing practice. The manners and humbled relational stances of the nurses engage and permit actualization of spiritual and

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nurses in this study intentionally work to create and embody a subject-to- subject stance rather than the subject- to- object distancing so prevalent in healthcare. Within this relational stance, study participants described feel- ings of hospitality, privilege, honor, and mutuality. Bev illuminates the personal understandings and professional experiences that engender this stance:

I discharged a patient to hospice today and I thanked him for allowing me to care for him…To be able to help people at this time of life, their most difficult, to take that last step with them is truly an honor… as you become older I think your spirituality develops more, because as you mature, you recognize the meaning of life.

Bev describes herself as a “cradle Catholic” (Catholic from birth). She holds firm to her belief and faith conviction that as she stated, “I was born to love and serve God and others.” Bev also articulated her journey into palliative care as being influenced by her father’s death and the positive connection and experi- ences her father and entire family encountered with the hospice team prior to his death.

Bev highlighted how personal experience with loss, in addition to providing insight and help for others, also has the potential for interfering with spiritual caring. This occurs when personal self-disclosure supersedes the awareness of client needs. Bev is clear about the importance of humility and this assists her in maintaining an “I and thou” or humbled relational stance:

I see this at times when not so much patients, but families are struggling to do the right thing for their loved one. Someone on the healthcare team, when

beliefs… the power the human spirit has amazes and humbles me a lot. I feel very fortunate… it puts the rest of my life into perspective too.

The chorus of the nurses’ voices revealed that through a humbled relational stance, the client and family experience support, presence, nonjudg- ment, and empathy. The nurses describe the opportunity to provide spiritual care as one of gift, privilege, and honor, taking a relational stance when providing care.

“I AND THOU” RELATIONSHIP Years of experience and learning

engendered responsiveness and empathy from the nurses when dealing with people undergoing, tragedy, loss, and fear of the unknown. They

provide for their clients what theolo- gian Craig Dykstra (1999) metaphori- cally calls “bread instead of stones” (p. 13). They accomplish this largely through a relational stance they maintain with their clients, which Martin Buber (1958) named an “I and Thou” relationship. This is a subject- to-subject rather than a subject-to- object way of relating. It necessitates a humbling of self and reverence to another for full engagement. Pohl- man’s (2009) research on fathers of critically ill preterm infants discussed the technological gaze that persons fall victim to in the healthcare setting, and the objectifying stance this creates in modern institutional care.

Jesus, in the hours before his arrest and crucifixion, taught the disciples the gift of servanthood through the act of washing their feet (John 13:1-17). Jesus embodied through ritual a humbling of self and reverence to another. He honors the disciples and ultimately, through an “I and Thou” relational stance, honors God. The

Cindy: I think for self-support as well as trying to help support others. Certainly I think faith is really important. It’s important to help get you through crisis, and no matter what the outcome, you need that.

Cindy’s dialog highlights the inter- secting relationship inclusive of God, self, and others that is articulated in spiritual care literature (Guido, 2010; Kelly, 2004; Taylor, 2002) and the things that matter to her in terms of spiritual care and practice. Dunne (1997) discusses how practices rely on socially embedded practical knowledge; certainly both shared and tacit background meanings enter into the world of nursing practice in this setting and others. Cindy’s experiences of being excluded from her

grandmother’s funeral, personal illness, and multiple losses of loved ones combine to inform her practice. Her “Being” represents, as Gadamer (1975) described, a “fusion of horizons” (p. 304) with those she cares for. This, simply put, is a shared social reality or under- standing of and participation with others who face similar exclusion, dislocation, illness, fear, anxiety, and death. Cindy’s very “Being” and capacity to respond to suffering is grounded by her personal and professional experience. This “fusion” is affirmed by those who knew and recruited her to start a palliative care program.

The following excerpt from Donna summarizes the honor and mystery of life revealed to her while providing care:

To me it is really an honor to be able to assist people on this journey…People are very honest at the end of their life and you get a glimpse to see into their soul… I see souls, I see spirits, they’re incredible beings, and I know they’re going to go on. It reaffirms my spiritual

Expertise in professional healthcare often

is in contradiction with humility.

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168 JCN/Volume 30, Number 3 journalofchristiannursing.com

Sophia: You know it’s interesting because people come with a lot of hope, and we talked about hope in the meeting. The chaplain said sometimes hope changes and goes from hope for a cure, to hope for time, and then a hope for peace. I think because those words came from a chaplain, it was more comforting to the family. Chaplains are faith-driven and there may be a mistrust of the medical at this point… But when the family acknowledges peace, something that people get spiritually from God, I think it opens up a dialogue for me as a nurse practitioner, where I can say, ‘Well, we are not able to cure this, but we can provide comfort…’. The chaplain also promised the wife that someone from their department would see her husband each shift for prayer and support. Nothing can be more valuable to

families when they can’t be here around the clock than a promise that someone will be here to pray and hold the hand of their loved one. That was at the end of the meeting, the family agreed to changing course and the patient is now [receiving] comfort measures only.

Sophia sees a bigger picture and recognizes that agency in expertise involves an interdisciplinary team approach. As a nurse expert, she views the chaplain as a valuable presence not limited to offering spiritual care. Sophia views the chaplain as a source of building trust, assisting with decision making, and creating space for her as a nurse practitioner to continue in a dialog of how best to provide comfort for individuals and their families.

Being with chaplains also enables mentoring, which adds to the nurses’ repertoire of spiritual care skills. The nurses reported learning nuances of spiritual care by listening to and

entire palliative team. She views spiritual care as inclusive of all that gives meaning and value to life, including the religious aspect that, for many patients, articulates the essence of spirituality. She considers the focus of palliative care one in which you utilize the entire team to holistically meet client needs. This team approach highlights what Benner et al. (2009) called expert agency, the ability to work in and through others to meet client needs:

Bev: I always, well I won’t say 100% of the time, but for the most part I have the chaplains come in and discern spiritual needs. They are the experts in that field; they are equipped to respond to patients from an active religious standpoint as well as general support and spiritual

guidance… Enlisting all the experts in the care of patients is really what palliative care is all about.

All of the nurses spoke to the value of their pastoral care departments for meeting spiritual care needs. Many reported a strong team relationship with pastoral care. Sophia, a nurse practitioner, highlighted the impor- tance of chaplain service and the team approach of meeting spiritual care needs and making difficult decisions:

Sophia: I work very closely with chaplains because so many times people are coming in receiving bad news, and they need the support that medication can’t give. So every time we have a family meeting, I will bring the chaplain with me.

PI: So you just had one of those meetings today, what was that like?

we’re having meetings, will all of a sudden start talking about something in their personal life involving a crisis…. It doesn’t help, it’s irrelevant… If the family wants to know more they will ask you about your personal life, but for the most part families don’t…Later families will say to me oh, “I felt so sorry for him [the team member]” and I’m thinking wait a minute, it’s not a about him, it’s about you.

Self-disclosure regarding personal experience and/or beliefs can be beneficial and may enhance the involvement of care. But central to spiritual care is a client-centered therapeutic relationship. Caregivers must continue to examine if their motivation for self-disclosure is meeting their own needs or the needs of their clients. Taylor (2002), when

discussing spiritual self-awareness, suggests nurses ask themselves, “What is the purpose of my self-revelation? For whom is this disclosure? Will my disclosure enhance the therapeutic relationship?” (p. 71). This holds true for the disclosure of personal life experience as well as personal beliefs and values. Bev views her relationship with clients as “invitation” and responds to their hospitality to cojourney with them at the most difficult moments as one of “honor and privilege.” She is aware of the difference between self-serving commentary and commu- nication that meets client needs. Through this awareness she is able to embody a humbled expert relational stance, which includes her ability to enlist other experts.

“ENLISTING OTHER EXPERTS” Bev’s humility assists her in careful

discernment of not only her nursing role but also the expertise of the

Personal experience with loss…has the potential

for interfering… when personal self-disclosure

supersedes the awareness of client needs.

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journalofchristiannursing.com JCN/July-September 2013 169

spiritual caring skills can be cultivated at all levels of the nursing skill con- tinuum, from student to novice to expert. Additionally, this study rein- forces the concept that not all scientific nursing knowledge branches from a Cartesian rationalist cause and effect, positivist framework. Nursing relies on both scientific theory-based knowing and the experiential art of tacit knowledge and skills for caring. Together, science and art enhance, inform, and enliven the discipline of nursing to permit agency and expertise in practice. The humbled expert nurses in this study articulated the awareness of the fragility of life, the essence of spirituality and whole persons, the experience of suffering, and the deep human need for connectedness.

Acknowledgment Funding was received for this

research from the Goldfarb School of Nursing and Sigma Theta Tau Interna- tional Tau Iota Chapter.

Benner, P., Tanner, C., & Chesla C. (2009). Expertise in nursing practice: Caring clinical judgment and ethics (2nd ed.). New York, NY: Springer.

Buber, M. (1958). I and thou (Smith Classic Translation). New York, NY: Macmillan.

Dunne, J. (1997). Back to the rough ground. Notre Dame, IN: Notre Dame Press.

Dykstra, C. (1999). Growing in the life of faith. Louisville, KY: Geneva.

Gadamer, H. (1975). Truth and method. (Sheed and Ward Ltd., Trans.). New York, NY: Seabury.

Guido, G. W. (2010). Nursing care at end of life. Upper Saddle River, NJ: Pearson.

Kelly, J. (2004). Spirituality as a coping mechanism. Dimensions of Critical Care Nursing, 23(4), 162.

Pittroff, G. E. (2010). The cultivation and practice of spiritual care expertise in an inpatient palliative care setting. (Doctoral dissertation). Retrieved from ProQuest LLC. (AAT/ UMI 3432880).

Pohlman, S. (2009). Fathering premature infants and the technological imperative of the neonatal intensive care unit: An interpretive inquiry. Advances in Nursing Science, 32(3), E1–E16.

Prayer of St. Francis of Assisi. (n.d.). Retrieved from www.prayerguide.org/uk/stfrancis.htm

Shulman, L.S. (2010). Forword. In P. Benner, M. Stu- phen, V. Leonard, & L. Day (Eds.). Educating nurses: A call for radical transformation (pp. ix–xii). San Francisco, CA: Jossey-Bass.

Taylor E. J. (2002). Spiritual care: Nursing theory, research and practice. Upper Saddle River, NJ: Prentice Hall.

Tyson, J. R. (1999). Invitation to Christian spirituality: An ecumenical anthology. New York, NY: Oxford.

Young, C., & Koopsen, C. (2011). Spirituality health and healing: An integrative approach (2nd ed.). Toronto: Jones and Bartlett.

care practices. This knowledge is utilized through a team approach as well as in isolation with their clients.

In summary, the astute perceptual skill and tacit knowing of expert nurses providing spiritual care at end of life are hidden in the unassuming posture of humility. Yet, it is humility that permits and actualizes the spiritual aspects of care. The humbled expert nurses in this study embody spiritual skills of caring that include presence, courage, silence, touch, nonjudgment, and empathy for patients and their families. These nurses know when they are beyond the scope of their practice and the interdisciplin- ary team is frequently enlisted. In service to others, the nurses describe a mutuality of care, a reciprocal phenom- enon present in the caring relationship as they get as much as they give and describe their role as one of “gift, privilege, and honor.” Their experiences in life and in practice have enlarged and enlivened their whole perspective of life, informing these nurses with more unique and refined ways to respond to suffering. It is through the humbled expert nurse that patients and families experience grace instead of awkward- ness, comfort instead of suffering, hope instead of despair, and a paradoxical peace. Indeed, “The Lord takes pleasure in his people; he adorns the humble with salvation” (Psalm 149:4, ESV).

IMPLICATIONS FOR PRACTICE AND RESEARCH

This study is unique in that it examined the personhood and spiritual care practices of inpatient palliative care nurses, a relatively new specialty that emerged in the United States within the last decade. This study illuminates expert nurses as possessing astute practical and tacit skills that create a context for a meaningful, peaceful, and dignified death, and acknowledges the practical, ethical, and moral value of nursing care at end of life. The results support the need for structures and policies that will continue and develop inpatient palliative care providers and programs.

The spiritual caring of the nurses in this study was dependent in part on personal life experiences, loss, and faith. Future research should explore how

mimicking the behaviors of chaplains. Lucy discussed how she often is in a situation when someone dies and the chaplain is not available or the family declines chaplain services. However, in the death moment, Lucy is the one left to help with closure before the family leaves the hospital. Lucy mimics the chaplain to help her meet spiritual needs at those times. She carries a small collection of sacred literature and poetry, which she utilizes when appropriate. Lucy is comfortable with prayer, yet modest when discussing her ability to weave thoughtful words carefully together to offer peace at end of life:

I would love to pray as the chaplains do, more spontaneously… I also get too emotional, when [I] say a prayer I almost always tear up, I’d like to get more help with this and be able to do that.

Lucy values the healing presence and carefully crafted words that chaplains provide at the most difficult times in life. Young and Koopsen (2011) point out that only 20% of hospitalized patients in the United States see a chap- lain. Lucy tries to be prepared when called upon hoping to meet patient and family needs while simultaneously experiencing her own grief and loss.

The nurses in this study are clear about their role in spiritual care. Bev, Sophia, and Lucy highlighted their awareness of when they are beyond the scope of their expertise. They operate with a team mentality in meeting client and family spiritual care needs. Yet, they also recognize the overlap of specific disciplinary knowledge and skills inherit of the nursing role. Shulman (2010) names nursing as a hybrid profession, one that is reflective of the attributes of other professions while maintaining a unique identity of its own. The nurses in this study draw insight and knowledge from many disciplines to inform their practice and provide care at end of life. This again points to the Benner et al. (2009) model of expert agency as working in and through others to provide the care their clients need and desire. Pastoral care is highlighted as the discipline that informs much of these nurses spiritual

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JAOA • Supplement 7 • Vol 107 • No 12 • December 2007 • ES33Bruce • Helping With the Grieving Process

When addressing pain, it is impor-tant to recognize an inextricable relationship between physical experi- ences of the body and those that are emotional, cognitive, and spiritual. Feeling pain is paradoxical: both unde- niably real and exclusively subjective in measurability. Whether specific phys- ical contributors to a given experience of pain can be judged to be neuropathic, nociceptive, or visceral in origin, all psy- chogenic components of pain—psy- chological, social, spiritual, and emo- tional—will be added to the physiologic register and mediated through the cen- tral nervous system. The effect will be reverberating, greatly influencing the ability of patient, family, and the care- giving team to cope with the patient’s ill- ness and gain the comfort and hope that is so necessary to maintaining quality of life. The pain of grief is no exception, and can be a powerful factor in the total pain experience that must be managed

not only by the patient, but also by all those involved in the patient’s care.

Grief can be defined as the neu- ropsychobiological response to any kind of significant loss, with elements both typical and unique to each individual or situation. The grief response is gen- erally associated with degrees of suf- fering, at times intense or even unbear- able, and of widely variable duration. Grief is a systemic event, whether the system is an individual or a larger group of individuals thrown out of equilibrium through changes brought on by loss.

Mourning is the shared expression of a grief experience, important in gaining a new equilibrium following any manner of deficit, including decreased function or role, loss of assumed health, and diminished dreams of the future. Grief and mourning together constitute the grief process, rep- resenting movement from life through death and back into life again. A grief

process for the patient with cancer and all those related in the system of care may begin at the time of a prognosis of terminal illness, but more often even before that point, at the onset of any life- limiting or life-altering condition. Every change in status will alter the ensuing grief trajectory to some degree.

In the medical arena, the team that has focused its efforts on healing often drops out when a patient becomes ter- minally ill. Patients and family mem- bers may experience this “dropping out” as abandonment at the moment of their greatest need by the experts to whom they have entrusted their hope. They are left to traverse the landscape of approaching death on their own, with all its emotional intensity, often without knowing what to expect or how to inter- pret what is happening to the patient physically. How can medical profes- sionals become personally prepared to assist in this often intense and very inti- mate passage of life into death and in its aftermath? The best preparation is both didactic and personal.

Knowledge About Grief Specifics of the grief process are being widely investigated today as health pro- fessionals attempt to delineate “normal” grief from that which is “complicated or prolonged,” qualifying for intervention as a clinical condition. Complete under- standing of this profound experience will better prepare all care providers to offer the most effective intervention(s) under given circumstances. Such knowledge may also assist those working through this very natural, necessary feature of human life to progress to a more positive outcome.

Modern psychology, from Sigmund Freud forward, has offered models of the grief process—both descriptive and task-oriented—that serve to define “appropriate, healthy, normal” sorrow and provide guidance through what is often called “the journey of grief.”1

The anguish of loss is a universal phenomenon, whereas mourning prac-

Physical experiences of the body and those that are emotional, cognitive, and spiritual are inextricably related. The author, a hospice bereavement coordinator and counselor, discusses how medical professionals can become personally prepared to assist in the often intense and intimate passage of life into death and later through both didactic and personal preparation. She also describes the major models of grief processes and illustrates the power a caring professional can have during the dying process and in the aftermath of a patient’s death by relating personal case scenarios. J Am Osteopath Assoc. 2007;107(suppl 7):ES33-ES40

Correspondence to Christine A. Bruce, MCAT, MDiv, LMFT, 1023 Kipling Rd, Rydal, PA 19046- 3339.

E-mail: [email protected].

Helping Patients, Families, Caregivers, and Physicians, in the Grieving Process

Christine A. Bruce, MCAT, MDiv, LMFT

This continuing medical education publication is supported by an unrestricted educational grant from Purdue Pharma LP.

tices vary across cultures; mourners bring their own respective life histories and context to the grief experience. There- fore, amid the diversity of approaches to grief, three attitudes remain the basic foundation for healing practice: empathy, attentiveness, and respect. � Empathy springs from simultaneous awareness both of oneself and of another person. � Attentiveness requires a level of per- sonal comfort sufficient under extreme circumstances to remain “tuned in”— cognitively, emotionally, and spiritually “present.” � Respect entails cultural sensitivity and openness.

Case Scenario A significant event in the life of my father, a physician, illustrates the principles of empathy, attentiveness, and respect. That event was his first encounter with the death of a patient.

As a first-year medical student at Penn- sylvania State University in 1943, he had been designated on a Friday afternoon to work in the emergency room. Around 4:30 PM, a 25-year-old woman, the mother of two young children, was brought in and assigned to him. She was several hours into the sudden onset of respiratory distress of unknown cause. As my father began to take a careful history, he could see that this woman’s life was ebbing away. He brought in the resident and called for the chief physician; no one knew what was happening except that her pericardial sac was filled with fluid, which they aspi- rated to no great effect. The hours passed and at 3 AM, despite efforts of the staff, she con- tinued to decline. At that time in medicine, there was nothing more that the hospital staff could do for this woman.

My father stayed with her, though the shifts came and went. In my father’s own words:

I couldn’t leave her, and no one knew what was wrong except that her heart and lung systems were all messed up. So in my very unprofessional and naive way, I just sat and held her hand. I never left her—I couldn’t leave her. Her life was slipping away. She kept saying, ‘I’m going to die, doctor,’ and I kept telling her, ‘We’re going to do everything we can for you, and every time you have any pain or discomfort,

you let me know and I’ll have the nurses do something about it.’

During the night, my father was given the task of informing the patient’s husband that his wife was dying. Although it was not a part of standard medical protocol at the time, it occurred to my father to inquire of her husband about her spiritual affiliation. The man responded that they were Catholics. Acting on instinct, my father called for a priest and participated in the ritual of extreme unction with the patient and family. At 5 AM, approximately 12 hours after the young woman’s admission to the emergency room, the patient died. A postmortem examination revealed that she had died of Ayres disease, a hereditary pulmonary stenosis for which there was no known intervention six decades ago.

The next day, the patient’s husband called the hospital to obtain the name of the medical student who had stayed up all night. The family invited my father to the home for the wake, grateful to him as the “doctor” who had cared for their family member in her dying hours, and grateful for his sensitivity to the family’s emotional and spiritual needs. His participation in the end-of-life story of this patient and her family would become a foundation of healing for them in the after- math; for my father, it was an unforgettable lesson in the power of a caring professional.

We live in a grief-saturated world. More than 2 million individuals die in the United States each year. It is difficult to estimate how many others are directly affected by these deaths, and it is even more complex to estimate how many will have compromised health due to bereave- ment. Healthcare institutions may fail to address the needs of the bereaved. Although the primary responsibility of healthcare providers is to the patient, the well-being of the family and others close to a dying person is also part of terminal illness. Even practitioners who perceive these needs may have trouble addressing them when third-party payers refuse to reimburse bereavement services. Grief affects not only individuals and commu- nities; but it is also a significant public health issue of concern to employers, policy makers, healthcare providers, and managed care administrators.2

Grief as a Natural Response Although grief can become prolonged

or complicated, it is not an intrinsically pathologic state, but rather, a normal and needful adjustment response. What are some common, predictable grief reac- tions? Every one of us has experienced them to some degree in the face of loss. In the cognitive-emotional realm, there may be disbelief, sadness, anger, guilt, and self-reproach, panic, anxiety, lone- liness, listlessness, and apathy, shock, yearning, numbness, depersonalization, and, depending on the circumstances, relief.

Grievers may become preoccupied with their loss, and their thought pro- cesses can become confused. There may be a sense of timelessness. If someone has died, there is often a sense of pres- ence, or of seeing or hearing the deceased. Physical sensations might include mus- cular weakness, fatigue, tightness in the chest and throat, dry mouth, nausea, and sensitivity to noise. There may be sleep and appetite disturbances, social with- drawal, sighing, searching, and crying, restless overactivity, reminiscing, and laughing, treasuring objects that belonged to the deceased, or avoiding such reminders.3

However it proceeds, the grief pro- cess poses a challenge to human systems at each level—through personal, inter- personal, family, and caregiver systems. Inherent in this process is the demand for change and substantial potential for growth—and/or decline. Loss disrupts equilibrium, and subsequent readjust- ments are multifaceted and complex involving somatic, psychological, social, cultural, spiritual, and historical compo- nents. Practically speaking, this means that besides somatic changes due to ill- ness, one must be aware of a patient’s grief-associated symptoms. The impact of disease or loss on total functioning of a patient or family system must be con- sidered. How is self-concept affected? Identity, expectations, and sense of the future all may need adjustment. What is—or was—the role of the patient in the family system? This role may change. There may be a loss of roles, of accus- tomed activities, capabilities, and per- sonal dignity. In a culture that strongly emphasizes health and youth, disease and demise are isolating.

Many people see suffering and loss

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as spiritually related. There may be a feeling of being punished or forgotten by the Diety, or of being purified and strengthened. Since there is a strong con- nection between spirituality and well- being, it is important to allow or provide for spiritual exploration and support during grief. It is also important to ask what personal history of losses provides the context or foundation for this one. What is the family context, community context, or racial-ethnic context? What “undigested” grief is there that will become a part of the matrix for this new experience?

Other contributing factors to the grief process include suddenness versus expectation of loss, causes and course of the illness, and whether there is a sense of hope and purpose through it all. Espe- cially difficult is “ambiguous loss,” essen- tially living with frozen grief, as in brain injury, dementia, serious addiction, or mental illness. Since the person being lost is neither clearly absent nor clearly present, it can be difficult for survivors to know how to move through the grief.4

Major Models for Grief Various models for the grief process have been proposed and used over the past half century as thanatology has devel- oped as a field of study. Most notable have been the works of Kübler-Ross5; Bowlby6 and Parkes7; Worden8; Wolfelt9,10; and Neimeyer.11

Kübler-Ross’s Five-Step Paradigm for the Grief Process Elisabeth Kübler-Ross, MD, psychiatrist and internationally known thanatologist, published her seminal study in 1969, titled On Death and Dying.5 The cover to the first edition included the explanatory subtitle, “what the dying have to teach doctors, nurses, clergy and their own families.” The work was the result of a seminar that began in 1965 at the Uni- versity of Chicago Billings Hospital, when four theological students approached Kübler-Ross for assistance in a research project on “the crisis of death in human life.” Together they determined that the best way to study death and dying was to ask terminally ill patients to be their teachers, through observation and interview.

Kübler-Ross’s observations now form the classically regarded five-step paradigm for the grief process: denial, anger, bargaining, depression, and accep- tance. She described the five stages as “coping mechanisms” that people go through to deal with extremely difficult situations.5 These stages were at times overlapping or coexisting, but, in her model, they are progressive. In addition to these central stages, the model included stage-bridging mechanisms of partial denial and preparatory grief. Included in the acceptance stage were Freudian concepts of decathexis, or with- drawal of emotional energy from the lost object, and recathexis, or reinvestment of that energy. In regard to the dying patient, this withdrawal signaled the end of the struggle to sustain bodily life and the investment of energy in letting go and moving on.5

Kübler-Ross further observed that “the one thing that usually persists through all these stages is hope.... It’s this glimpse of hope which maintains them through days, weeks or months of suf- fering.”5 She defined hope as “the feeling that all of this must have some meaning, and will pay off eventually if they can only endure it for a little while longer.”5

Interestingly, the patients that Kübler-Ross interviewed showed the greatest confidence in those physicians who allowed them to express and main- tain their hope, in whatever form.4 Even with acceptance of a diagnosis of ter- minal illness, one can hold hope of con- tinuing to live to the end in a meaningful, zestful way, relating to life, and being a unique personality through the moment of death.

Bowlby and Parkes’ Four Phases of Grief British psychiatrists John Bowlby, MD, and Colin Murray Parkes, MD, collabo- rated on the grief process in the 1980s, bringing together insights from Bowlby’s “Attachment Theory”6 and Parkes’ studies of human information pro- cessing.7 Together they reformulated Kübler-Ross’s five stages into four phases of grief, and observed that these stages were not always linear but could recycle through recollection, or some triggering experience or anniversary reaction. One

who grieves can travel around and around the process before emerging, so sustained care giving is needed rather than viewing grief as a series of pro- gressive stages with a predictable and orderly end.7

The initial phase of their model, shock and disbelief, discards the term denial with its pathologic connotations. Instead, there is insight that the human organism does what it needs to do to cope with reality. Body, mind, and soul adjust to the distressful situation by closing down to protect and rebuild in small incre- ments. Reality is set aside, in part, and allowed slow entry into the self-system. In this stage, there is a strong, but adap- tive, need to withdraw, to be numb and unresponsive.7

During the second phase, searching and yearning,7 a person will attempt to undo or retract the distressful reality with thoughts such as “This couldn’t have happened!” “Why this?” “Why us?” “Why now?” “If only...!” The affect is angry, agitated, and frantic.

The third phase, disorganization and despair, represents full penetration of the distress, and of facing the loss.7 Here, one could hear statements such as “My life is over. I just don’t care anymore. I can’t go on.” There is depression, disor- ganization, absentmindedness, and apathy. These responses, normal signs of separation distress in this phase of grief, should be supported and not con- fused with a pathologic state.

The final phase is that of rebuilding and healing, in which the grieving person will begin restructuring and reorganizing to proceed.7 One begins to take on the changes and move forward in life; the loss is no longer defined in terms of the self. Rather, the grieving one has a renewed sense of identity, which goes beyond—and is greater than—the loss. The grieving person will have more energy and sociability, and an ability to view his or her grief in a larger perspec- tive.

Worden’s Four Basic Tasks for Adapting to Loss J. William Worden, PhD, psychothera- pist and researcher in the field of ter- minal illness and suicide, holds academic appointments at Harvard Medical School

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and the Rosemead Graduate School of Psychology in California. He is also co- principal investigator for Harvard’s Child Bereavement Study. His research and clinical work spanning 30 years has cen- tered on life-threatening illness and life- threatening behavior. His text, Grief Coun- seling and Grief Therapy,8 grew out of this project and his own clinical practice. Worden views mourning—the adapta- tion to loss—as involving four basic tasks, the completion of which are essential for a person and/or family system to return to equilibrium and complete bereave- ment by � accepting reality of the loss, � experiencing the pain of grief, � adjusting to an environment in which the deceased is missing, and � withdrawing emotional energy and investing it into another relationship.

These four undertakings need not follow a specific order; they can be con- current, cyclical, or overlapping, and the grieving person will work on them with effort until regaining balance.

Worden speaks of particular diffi- culty with the fourth task. It is here that grief most often remains unresolved, as the mourner continues to hold onto a past attachment rather than form new ones. In doing grief therapy within this model, it is important to facilitate emotional recon- ceptualization of a lost love into memory so that emotional space will be created for new relationships. Worden’s expected time frame for full resolution of grief is 1 to 2 years, a projected point where nat- ural sadness of having loved and lost will no longer have the initial wrenching quality. If progress through these devel- opmental tasks is arrested at some point, the grief experience will become intensi- fied such that the grieving person becomes overwhelmed; a pathologic con- dition then appears.8

Wolfelt’s “Companioning” Approach to the Bereaved Alan Wolfelt, PhD, a major voice in the field of thanatology, is founder and director of the Center for Loss and Life Transition in Ft Collins, Colo (Figure); he is known internationally as a grief edu- cator and care provider.

Whereas previous models have emanated from the modern perspective

that if we know what is wrong, we can fix it, Wolfelt’s approach is much more postmodern, that is, each person’s grief experience is unique and no predictable or orderly stages exist. The mourner is the teacher, rather than the recipient of another’s expertise; mourner and sup- porter go together on a journey of dis- covery.

Wolfelt’s approach is therefore much more experiential and narrative; he teaches that caregivers to the bereaved should “companion,” rather than treat those in grief. In his words,9

‘Companioning’ is about honoring the spirit, being curious, learning from others, walking alongside, being still, listening with the heart, bearing wit- ness to the struggles of others and being present to their pain, respecting disorder and confusion rather than imposing order and logic. Compan- ioning is about going to the wilder- ness of the soul with another human being; it is not about thinking you are responsible for finding the way out.

“If you love, you will mourn,” is a foundational understanding in Wolfelt’s

philosophy. Rather than viewing grief as a disease state from which to seek recovery, he sees the pain of loss as an inherent part of life resulting from the ability to give and receive love. Since everyone is changed forever by their grief journey, concepts like reestablishment, recovery, and resolution are not adequate to describe what needs to happen in grief. One does not “get over it,” but learns to live with it and reconcile oneself to it. In Wolfelt’s grief process, one moves toward the pain in order to walk through it (vs work through it).

Wolfelt sees six central needs of grief (cf Worden’s four central tasks8) that are more experiential than task-oriented, and with a more relational, tribal, systemic view of the self. Four are familiar: � to inwardly experience and outwardly express the reality of loss through mourning; � to tolerate the pain of grief while caring for oneself; � to convert the relationship with the lost person from presence to memory (relocation of the relationship in the heart of love versus decathexis or withdrawal); and � to develop a new self-identity based on life without the person who died, taking on new roles, and exploring pos- itive aspects of oneself in the change.

Added to the process are � to relate the experience of loss to a context of meaning, telling a story about the loss until it becomes “the story” that makes some sense of it all, teaches some lesson, or provides some doorway to continuance; and � to develop an understanding, en- during support system that will provide a strengthening brace while healing takes place in the months and years ahead. These are fellow human beings who will companion the mourner and encourage self-compassion whenever a normal resurgence of intense grief occurs.10

Neimeyer’s Narrative and Constructivist Approach An important contribution to thanatology comes from Robert A. Neimeyer, PhD, professor of psychology at the Univer- sity of Memphis in Tennessee. A prolific author, theorist, and clinician in the fields of psychology and bereavement, he has

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� www.adec.org Association for Death Education and Counseling (an interdisciplinary organization formed to assist professionals and lay people in the field of dying, death, and bereavement)

� www.centerforloss.com Alan Wolfelt’s organization

� http://cancernet,nci.nih.gov National Cancer Institute

� www.aarp.org American Association of Retired Persons (has useful self-help information about grief)

� www.nhcpo.org National Hospice and Palliative Care Organization.

Resources

Figure. Useful Web sites.

conducted extensive research on the topics of death, grief, loss, and suicide intervention. He is currently working to advance a more adequate theory of grieving as a meaning-making process. As a narrative-constructivist, Neimeyer11

approaches human experience from the view that people co-construct reality together, continually updating their per- ception of it as they write and rewrite their life stories in the center of their beliefs; developing an ongoing sense of identity, purpose and belonging. Neimeyer elucidates six key realities influ- enced by death, derived from construc- tivist thought, namely: � Particulars of a loss can validate or invalidate one’s core assumptions about how life should work, or they may encompass a novel experience for which one has no framework of assimilation. We may try to interpret loss within our own developed framework of beliefs, but may be forced to create a new under- standing of reality in order to proceed. � Grief is idiosyncratic, both universal and unique. As such, effective therapeutic interventions will be client-led, with the bereaved as the active locus of control for proceeding. � Grieving is active, affirming or recon- structing a personal world of meaning that has been challenged or ruptured by loss. It is a period of decision making, practically and existentially, not a time of passive waiting through a series of emo- tional transitions or stages. � Emotions during grief are functional and useful guides. The bereaved must reconstruct a world that restores a sem- blance of meaning, direction, and inter- pretability to life. Emotional states hold something important for us to learn in this process, and should not be viewed as dysfunctional conditions to be extin- guished or overcome. � The reconstruction of a grieving person’s identity is a social process, at once individual and regulated by soci- etal and family norms. � Grieving individuals adapt to loss by restoring coherence to the narratives of their lives, making sense of their own great continuing story, putting the pieces of the shattered puzzle back together like any trauma survivor, finding a way to fit what happened into a life that is not

only surviving but also ultimately, it is hoped, thriving.11

Recent Research It is interesting that in the present debate on the validity and applicability of var- ious grief and treatment models, a major study recently conducted by Maciejewski et al at Yale (the Yale Bereavement Study12) in New Haven, Conn, asked, What does typical grief look like? The study concluded that the bereaved do tend to report experiences in line with the “Stage Theories” of Kübler-Ross, Bowlby and Parkes, and Worden when tracked during the first 24 months after a loss, with several notable distinctions. In particular, the study showed that not depression, but yearning was the most prominent negative emotion a mourner experienced after a death. Acceptance was the most common and steadily increasing indicator throughout the length of the study, rather than defining a final stage of arrival.

Further observations were that dis- belief decreased from a maximum at 1 month postloss, yearning peaked at 4 months, anger was utmost at 5 months, and depression was highest at 6 months following the loss. Acceptance increased steadily throughout the 24 months post- loss observation period.12

A co-author of the Yale Bereave- ment Study, Holly Prigerson, PhD, has been central in developing proposed cri- teria for “prolonged or complicated grief disorder” as a new diagnostic category to be included for publication in the Diag- nostic and Statistical Manual of Mental Dis- orders Fifth Edition (DSM-V) now in devel- opment for publication in 2012. In the Yale Bereavement Study, negative cog- nitive-emotional indicators for grief began to decline after 6 months, sup- porting Prigerson’s recommendation that persistently severe, distressing, or dis- abling signs of separation distress at more than 6 months postloss be diagnostic of the disorder. However, more than 50% of the sample population for the study was older than 65 years, mostly older widows “with a fair amount of preparation for their loved one’s death.” Those with knowledge of a patient’s diagnosis of ter- minal illness for at least 6 months prior to the death were more accepting than those

who had less time to adjust to the new reality. Bereaved parents and others suf- fering from traumatic or violent losses were excluded from the study and likely would express a different set of norms.13

Diagnosing Complicated Grief Prigerson et al14,15 propose a model for diagnosing prolonged or complicated grief in the presence of a diagnostic cluster of at least 6 months’ duration, including symptoms of separation dis- tress, traumatic loss, and shattered meaning.

Mardi Horowitz, MD, professor of psychiatry at the University of California in San Francisco, and her colleagues16

proposed a similar model, but one that requires 14 months postloss before a diagnosis can be made. Diagnostic cri- teria from each model include specified percentages of signs and symptoms causing clinically significant impairment in social, occupational, or other important areas of functioning.17

Both diagnostic models are avail- able online at www.redmh.org/research /specialized/grief.html.

Important Issues for Caregivers The individual, intrapersonal experience of grief is similar across cultures,18 though bereavement practice can vary pro- foundly. A grief reaction on the anniver- sary of a loss, for example, seems to be part of the circadian, somatic nature of sorrow rather than purely culturally con- ditioned. I observed this response in a young child who had no coaching to expect such a resurgence of grief at a par- ticular time, and whose parents were surprised by the anniversary, as well. They had been out of the United States without the possibility of contact with their 6-year-old child for several weeks. During that time, an important linking object, a little bear he and his mother had chosen together before the trip, had been taken from him by someone in a fright- ening and traumatizing way.

When the boy’s mother returned and the child told her some of what had happened, she sympathized with him and together, they chose a bear as a sub- stitute for the lost bear. The incident was forgotten until exactly a year after the

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loss of the first bear. The child came to his mother in tears of grief over the bear. He told her the traumatic details of the loss, which he had never mentioned before, but which had come into his conscious- ness for review quite unexpectedly a year later, with all its attendant feelings.

The ways in which a person responds to—or expresses—grief feel- ings are qualified by culture as well as experience. A good question to ask in caregiving is “What is required or expected by the grieving person’s cul- ture in this situation?”

Grief practices across cultures serve an important purpose, and it is important to honor them. Monica McGoldrick, PhD, LCSW, director of The Multi-Cultural Family Institute of New Jersey, in High- land Park, has developed training on ethnic patterns for the medical school curriculum. McGoldrick, co-editor of the text, in Ethnicity and Family Therapy,19 has posed these questions for cross-cultural sensitivity: � Are certain types of death particu- larly traumatic for this sociocultural group? � What rituals are prescribed for man- aging the dying process and aftermath? � What beliefs exist regarding what happens after death? � What emotional expressions are appropriate in response to this loss? For example, Puerto-Rican traditions such as crying, screaming, and hysteria are common, expected, and even respectful ways of mourning at a funeral. In con- trast, an American family of British descent believes it is important not to show grief in an outward display of emo- tions, but to keep a “stiff upper lip.” In this latter case, it is deemed “responsible” to keep personal problems to oneself, and not be “a bother” to anyone. Caregivers unaccustomed to either of these two extremes could misinterpret and label a culturally normal response as “patho- logic” in attempting to fix the problem.10

It will be helpful if caregivers know when to be watchful for signs of pro- longed or complicated grief. Perhaps the patient or survivor held unrealistic expec- tations about life and death; maybe a support system was or is lacking. If the illness or manner of death is stigmatized (eg, from AIDS), or if death marks the

end of an ambivalent or abusive rela- tionship, an individual may have trouble with grief.

Prolonged dying also places a great strain on caregivers, depleting their phys- ical and emotional resources and pre- disposing them to illness on the rebound. Other questions about the circumstances of the death that should be considered in assessing grief include: � Are substance abuse or other com- pulsive behaviors present, or a history of multiple or unexpressed losses? These may be risk factors for complicated grief. � Was there no choice about seeing the body? � Is litigation involved? � Does the survivor experience con- suming guilt or blame? � Was the loss abrupt or traumatic or both?

Research into traumatic loss indi- cates that such grief can be prolonged, pervasive, and debilitating without indi- cating a psychiatric disorder.15 Grieving survivors of trauma victims should be reassured that the intensity of their feel- ings is entirely normal and acceptable. According to recent studies, most of those who grieve need only time and sympa- thetic company. However, long-lasting grief in cases of shocking loss can

resemble a traumatic stress response, and may respond to treatments recom- mended for posttraumatic stress disorder (PSTD) or depression.20

Family caregivers and survivors will not be alone in experiencing the pain of loss. Grief will impact health profes- sionals caring for those who suffer and die. Jeffrey Kauffman, LCSW,21 special- izing in the treatment of grief and trauma, writes about the professional caregiver’s awareness of his or her own mortality:

One’s own denials and dissociations of death anxiety in relation to oneself, may, in reaction to the grief of others, block empathy or open it up. Our own grief is always there in some way in our every encounter with the grief of others. It may be both an impediment and a means of empathetic connection at the same time, but it is always there. For each of us, as we approach the work of supporting others in their grief and facilitating the mourning process, we approach a place which is spiritu- ally and psychologically very pow- erful, both healing and dangerous. The caregiver should be prepared with self- awareness and an openness to the vul- nerability of self and other and to the great spiritual and psychological wounds that occur in grief.21

Basic issues intrinsic to the helping professions—which grief will activate— must be addressed.

First, there is the reality of attach- ment and loss for anyone who is empa- thetic. A healthcare professional may say inwardly, “You’ve engaged me. I’ve invested myself in you. Now you’re leaving.”

Then, there can be the narcissistic injury of, “My job was to heal you, but I can’t, and that feels terrible.” Frustrated altruistic strivings may include, “I’m in this business to give life and to help others, so my energies must go to the living, not the dying.”

There may be personal issues that are brought to the surface, or a crisis of faith brought on by particular circum- stances: “This one is too close to home!” or “Why this, God?” It may be a matter of grief overload, as observed in health- care professionals working in hospice or emergency trauma situations: “Now this is just too much!”

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© 2007 Dreamstime.com

Any of these natural responses would lead healthcare professionals to do exactly what the patient fears the most and needs the least, that is, to withdraw emotionally and physically, become curt or perfunctory, and abandon bedside manner. What can one do?

The following case scenario illus- trates how grief counseling helped the parents with three other children cope during the terminal stage of one child’s cancer, her loss, and the bereavement process that followed the child’s death.

Case Presentation A family of two parents and four children had been struggling valiantly for several years with treatment of one of their children for brain cancer. Kendra (not her real name) was an elementary school–aged child who, by reason of an unrelated condition, had been both heroically independent and needfully more dependent on her parents throughout her young life. This situation set the stage for bitter irony at her prognosis of terminal cancer and acute separation distress after her death.

Kendra’s siblings each had their own unique and special relationship with her. The oncologists waited to determine the child’s eligibility for hospice care until every pos- sible hope had been exhausted, as the parents would have desired and expected. Kendra was considered to be just a few days away from death when she came on hospice ser- vice. The parents—not wanting to upset either Kendra or her siblings with anticipatory grief—were distressed about whether and how to tell their other children the truth about their sister’s critical status. A hospice bereave- ment counselor was called in as part of the interdisciplinary team to assist them in coping and decision making.

Because of the parents’ reluctance to speak of this coming crisis, the counselor sug- gested that they would build trust and reduce their other children’s isolation and panic if they would speak to them in a loving, con- taining, age-appropriate, but genuine, manner before Kendra began actively dying. The par- ents were unwilling to make this choice and expressed the fear that they would not be able to handle the strong emotions that might ensue.

The counselor respected the parents’ choice but proposed that they think about what it would be like if they were to speak

with their other children about the reality. The counselor invited Kendra’s parents to begin to say some of the words they might say. They parents did this hypothetical role play with the counselor; eventually, they did use the thoughts they had rehearsed to shep- herd their family through Kendra’s death sev- eral days later. Different members of the hos- pice team kept vigil with the family throughout the dying process.

The counselor stayed connected to the family for 2 years after Kendra’s death for bereavement counseling in the form of “grief walks” in the beautiful, natural landscape near where the patient was born. In assessing the parents’ coping strategies, it was clear that physical activity—”being able to move when you just feel like running away”— would both facilitate discussion during the walk. It was also needed as a relaxant to set the stage for the difficult emotional work of grief that occurred during the last segment of each session.

Opening Discussion It is important for healthcare profes- sionals dealing with grief and loss to explore their own “grief landscape”. They should ask themselves, � What are my issues with loss at this point in my life? � What is my history with grief? � What losses have impacted me, which still exert pressure on my ability to cope? � What does my belief system tell me about the meaning of suffering, of life, and of death?

All this exploration can take time, but it is worthwhile to assess periodi- cally, to observe and acknowledge losses, pressures, and unreconciled grief in one’s life. In fact, it can be encouraging to look back from a new perspective year by year and see how things change. Those who develop a measure of comfort with life and death issues—and learn how to live with their own grief and losses— will become more capable of adminis- tering effective, life-giving care, even to someone who is dying. Their person and presence will be able to instill confidence and hope that is genuine and based in reality.

What are some of the major con- cerns of consciously dying persons? Often, they have concern or even guilt regarding those whom they will leave

behind. Dying persons have fear of � losing control � loss of dignity � loss of self-determination � ceasing to be � pain � being alone � the unknown

Responding to these concerns requires that physicians and caregivers maintain an attitude of empathy, atten- tiveness, and respect, as well as a will- ingness to take time, be present, and listen. Nonverbal communication is important. Healthcare professionals should sit down and invite sharing: “You may have some questions.... Tell me your thoughts on this matter.... I’d like to hear your concerns.... You must wonder if you’re going to get well.”

Ira Byock, MD, past president of the American Academy of Hospice and Pal- liative Medicine, has written a practical and compassionate guide to Dying Well: Peace and Possibilities at the End of Life.22

The appendix contains many examples of questions that family members or patients may want to ask and insightful responses through which the healthcare professional can open up a helpful con- versation.

What Do We Need During Grief? Without a doubt, patient, family, and healthcare professionals share some of the same needs when faced with the grief process. Healthcare professionals need time alone and time with others to feel and understand their own losses. They need rest, relaxation, nourishment, and diversion to be replenished from the exhaustion of grief. They need a sense of security, trust, and hope in the future, gained by experiences of being cared for. Healthcare professionals need that which will give impetus and direction to life when it seems to be without meaning. They need lightheartedness, simple plea- sures, and humor, which provide bal- ance and relief from stress. Metcalf and Flible23 provide a helpful resource along these lines.

Finally, healthcare professionals can benefit from access to the transcendent or spiritual realm of life. As Byock observed22:

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It is a paradox of dying that a person can seem to grow strikingly in the realms of spirit and soul as the phys- ical self dramatically shrinks.... The contemplative place of prayer or med- itation can provide a place of safety and distance—not from, but within, the experience. This tender vulnera- bility [of spiritual composure and openness] seems a prerequisite for the deepest tasks of inner development.

In the words of the Ancients: “Hear my cry, O God; attend to my prayer. From the ends of the earth I will cry to you, When my heart is overwhelmed; Lead me to the rock that is higher than I.”24

So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.25

Comment Bereavement is a multifaceted process, posing a challenge to the patient-family system in interlocking dimensions—per- sonal, social, physical, practical, emo- tional, and spiritual—with imperious demands for change. The grief process carries the potential for either decline or growth in the health and well-being of any of those involved. Physicians who are both educated about the grief pro- cess and willing to assist dying patients and their families beyond just prescribing therapeutic regimens will certainly ensure a more healthful closure to a sad but normal process of life.

References 1. Sprang G, McNeil J. The Many Faces of Bereave- ment: The Nature and Treatment of Natural Trau- matic and Stigmatized Grief. Washington, DC; Psy- chology Press; 1995.

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Bruce • Helping With the Grieving ProcessES40 • JAOA • Supplement 7 • Vol 107 • No 12 • December 2007