At some point, people who are diagnosed with a life-limiting condition or illness generally realize that they are in transition to something unknown, either to the process of living differently with the condition or perhaps to the process of dying with it. Their time during this transition is precious. It may be a last opportunity to live as fully as one can, to be authentically oneself, to communicate meaningfully with loved ones, or to experience life in a different way.
The spiritual questions and concerns of people in this kind of life transition are often universal in scope. It appears to be inherent to the human condition to ask, “What has my life been about? What will it be about now?” Understanding our beliefs and finding a purpose can help to strengthen, calm, and root us when we are feeling knocked about by life or victimized by circumstance. This is true for patients as well as for those involved in their care, including loved ones, hired caregivers, and medical professionals.
Until they breathe their last breath, people often are still growing, appreciating, seeing things from a new perspective, and making meaning. They are engaged in the last developmental stage of life as we know it, and being with people at this stage in their development can be an amazing, invigorating experience.
As Confucius observed thousands of years ago, “everything has its beauty, but not everyone sees it.” Our society in the United States focuses on death and dying as a tremendously negative and painful experience. We dismiss our last phase of life as a terrible series of losses that is devoid of value. It does not have to be so.
The physical, emotional, and spiritual challenges that people face at this stage can be met with respect, compassion, and guidance. A closely knit palliative care team that is devoted to the dignity and comfort of both patients and families can facilitate a positive, meaningful experience of illness, dying, death, and bereavement. By valuing and being present at the last developmental stage of life, we open ourselves to the wonder and opportunity that lies therein. Part of that opportunity is to find a sense of comfort, contentment, and completeness by the time death occurs.
How do we help people get there? How do we make our way toward a greater sense of wholeness as we move toward the end of life?
Clinicians who specialize in palliative care are trained to combine highly effective medications with complementary therapies to address physical concerns. So, too, effective tools and guides are available to help lead a person toward a place of emotional and spiritual comfort at this critical time in his or her life.
Common Fears
Change is usually stressful for human beings—not just unwanted change, but even changes that we desire. People may deem as positive a new job, marriage, or children. Changes we may judge as negative include the diagnosis of a life-limiting illness, going through treatment, or losing a loved one. Why are both kinds of change taxing? Change represents loss. After integrating the change, we will not be the same person and are thus called on to form a new identity. Such an invitation may be perceived as both a curse and a blessing, and moving toward this unknown can be extremely frightening.
Why does fear of death seem larger than fear of other unknowns? First, the other unknowns, such as marriage, childbirth, and the diagnosis and treatment of a life-limiting illness, have usually been survived by and reported by others. Because dying is the only unknown that has no survivors who can report the experience, it is harder to comfort those who may be moving closer to death. Witness the human fascination with near-death experiences—we are looking for reassurance from those who have gone before us.
In addition, if change inherently brings loss, then death is the ultimate change: the loss of everything as we know it and the integration of a new understanding of ourselves and the greater world. Some people think of it as the ultimate leap of faith; others describe it as the greatest letting go they will ever experience.
Individuals express fears around illness and dying in three principal ways: physical concerns, emotional concerns, and spiritual concerns. People often wonder about the actual, physiologic process of becoming sicker and dying: Will it hurt? Will it be awful? People may form a graphic picture in their mind of specific, uncontrolled symptoms overtaking their bodies. For some individuals, the only image of dying they have comes from the sensationalism of movies and television. Others may have watched an elderly loved one experience illness or death without symptom relief years ago.
Individuals often describe their emotional concerns in terms of worry—worry about burdening loved ones and, later, about the possibility of leaving loved ones behind. People with life-limiting illness sometimes wonder what they will be missing and how loved ones will function without them.
In terms of spiritual concerns, a person with a serious illness tends to reflect on some combination of the following questions:
What is happening to my body? Will I die?
Why have I been afflicted?
Do I believe in an organizing intelligence or connectedness in the universe? Do I believe in God? What kind of greater world do I believe in?
What has my experience of the foregoing been thus far? Does my experience match what I say I believe?
What has my life meant?
What gives my life meaning right now?
What will give my life meaning in the future?
How have I treated people and the world at large?
Do I live true to my values? Do I live true to my beliefs?
In general, at critical life junctures in which spiritual counsel is offered, it seems to be inherent to the human condition to ask the following:
Where have I been?
Where am I standing right now?
Where am I going?
Purpose of Spiritual Care
Illness is a highly personal experience that no one else can have for us; no one can adjust to the limitations and losses incurred from illness but the person himself or herself. In the words of the Buddha, “Peace comes from within. Do not seek it without.” Life-limiting illness can be an extremely lonely experience.
Thus, spiritual care has two aims: to address the deep sense of isolation that accompanies serious illness and to help patients and loved ones find their own internal sense of comfort, strength, and balance. When these goals are achieved, the person may unearth a broader or deeper understanding of his or her relationship with the larger world. Patients and caregivers often describe this discovery process with words of wonder and relief, finding a quiet, inexplicable gift hidden within the illness.
Definitions
There are countless ways to describe spirituality and religion, and admirably rigorous works that examine the issues have been well set out elsewhere. Simply put, spirituality is about a relationship between ourselves and the greater world, whereas religion is an expression of this relationship by a particular group. Spiritual care addresses both the universal and the particular—the interior awareness of our connection to the world at large and the specific form that relationship takes. Both may influence some or even all aspects of a person’s daily life, thus presenting a person with abundant resources in which to find solace.
Methods of Spiritual Care: The Role of the Chaplain
Reviews of the role of clinicians in providing spiritual care are excellently provided elsewhere. Deeper spiritual work usually is provided by a chaplain. There are three primary roles for a spiritual care professional in palliative care. One is simply to be with the patient in the experience of transition and hope to alleviate some of the patient’s isolation. Another is to connect the patient with clergy from a particular tradition, if that is what the patient desires. A third role is to be present for the patient’s exploration of spiritual concerns and questions.
Presence
First, it is of utmost importance to offer a humane, compassionate presence. Although we cannot take away the deep sense of isolation that patients and caregivers tell us they experience, we do aim to lessen it to the extent possible. How do we do this? Simply by being present with people as they struggle through their challenges. They may not have any interest in discussing religious, spiritual, or emotional matters and may, in fact, describe themselves as “areligious,” “nonbelievers,” or “not spiritual.” This should not be a deterrent to the spiritual care professional in palliative medicine. We are there to provide a quiet, supportive presence for those who desire to be accompanied, to meet people on a path they may never have walked before, and to hold their hand, figuratively or literally. If watching a baseball game with a patient brings comfort to him or to her, that is how the relationship begins to be built.
Even if a patient is comatose, spiritual care professionals visit the bedside to talk, or meditate, or sing, or hold a hand. We hope that with the sound of the human voice or the touch of the human hand, such a patient may feel a bit less alone.
Tradition and Community
The second role for the spiritual care professional is to facilitate connection between patients (or caregivers) and their religious tradition. We do this by offering to contact clergy and congregations from each individual’s particular faith tradition. Even when an individual or family tells us of a lapsed or nonexistent relationship with the institutional part of religious tradition, we offer to arrange for clergy or congregants of the faith tradition to visit. Such a visit may allow individuals or families to take part in religious observance through ritual, prayer, holiday celebration, story telling, or conversation. Although a person’s interest in religious observance may have lapsed during adulthood, he or she will often find a significant, new relevance in participating, much to the surprise of loved ones.
If the prospect of a visit seems too much to bear or feels too invasive and the person still desires some form of connection with his or her own faith tradition, we also offer the opportunity to be included on a prayer list of a particular religious community. In either case, experiencing the link to the heritage and rituals and community of one’s own faith tradition brings some people a sense of belonging and relief, relief at remembering one’s connection to a larger community of faith.
Reflection
The third role for the spiritual care professional is to invite individuals and families to bring their spiritual joys and concerns to light. Spiritual counselors are trained to facilitate the exploration of one’s inner experiences of meaning and faith, as well as one’s understanding of being as it relates to the greater world. Such exploration may uncover both spiritual strengths and stressors, areas of vigor and unease. By helping an individual to hold the fullness of these, the person’s interior experience is received in total with respect and compassion. The person may begin to feel less isolated by his or her circumstances and may begin to move toward a greater sense of wholeness and integration.
Paths to Meaning
Traditional forms of spiritual care include prayer, the holy scriptures of one’s faith tradition, and spiritual reflection. Sitting in silent companionship may also provide a supportive presence that feels comforting to some people. Sometimes people with a life-limiting illness may not wish to (or be able to) expend precious energy on speaking. Even facial reactions require a certain amount of vigor that may not be available to the very sick.
There are other, very simple ways to provide care for the human spirit when a person is seriously ill. The list is limitless, really, but several ideas follow that may start the reader thinking. They show how each of us is touched in different ways, some visual, some auditory, some kinesthetic.
Location, Location, Location
First, a bed-bound person may find the bedroom setting too isolated from the rest of the household. Consider moving the bed to a more central location, such as the living room, where the person may become integral to the natural flow of household activity, rather than being set apart. Physical proximity to the daily bustle of life may increase the bed-bound person’s sense of participation and connection and can often result in a boost in spirit.
Nature: The Five Senses
Next, many people experience an increased sense of well-being when they are in the presence of nature. Some relate that they feel most connected to the universe or God, most peaceful and whole, when they are outdoors in the natural world.
Moving a bed close to a window with a view of the natural world can work wonders for the spirits of such individuals. One attentive family I met even installed a special bird feeder in the window that attracted birds within the patient’s view, and the patient delighted in the variety of lively, petite birds that visited her window each morning.
When this is not possible, a video or audio recording of the natural world can bring the sights and sounds of nature to the bedside. Watching sapphire blue waves lapping at a sandy beach bathed in the glow of an orange sunset or listening to the chirping of tiny, soft birds atop tall, green trees swaying in the wind can be very calming and soothing to the human spirit.
Aroma can also help people feel connected to the larger world. The fragrances of incense and spice are part of some religious traditions, and favorite scents of flowers and foods can delight the hearts of those who love them. One daughter I met told me of peeling the thick skin of a fresh orange beneath her mother’s nose, because the bright fragrance released by the natural oils in the orange peel had been one of her mother’s daily joys in life when she was well. Another person described her happiness and memory of wholeness simply at having the taste of coffee put on her tongue.
The pleasure of touch can also revive the spirit. For those who are seriously ill, touch is often a neglected sense, yet it is one that can return people to an early memory of wholeness, caring, and value. The warmth of a gentle, furry animal or even the soft squishiness of a velvety stuffed animal can help people to remember their connection to love, security, and comfort. Light massage can help people regain a memory of wholeness and contentment, as well, and can remind people that they are still fully human and part of the larger world.
Art
Some people feel intimately connected with the greater world through art. Consider Kim. Kim had her bed moved to the living room, beside her favorite window view, and then asked that her favorite painting be hung close to her new location. She had fond memories of complete absorption in that painting and knew that she needed its familiar comfort with her now. For other individuals, creating art or watching art be made at the bedside may feel nourishing to the spirit.
Music
Similarly, some individuals experience a deep sense of connectedness to the larger world through music. Hearing live music played at the bedside, singing, or listening to recorded music can help to enhance a person’s sense of inner strength and balance. Consider Tim, a gentleman with lifelong medical problems of increasing acuity, who felt fortified and at ease after regular visits from the music therapist. The therapist nurtured Tim’s love and knowledge of classical music with discussion, live performance, and recordings specific to Tim’s musical interests.
Creating A Spiritual Legacy
Some people wish to record what they have experienced, what they have learned in life, and their wishes for the future. Those who are inclined to write may put their thoughts down on paper, in a form of their choosing, such as journal entries, poetry, short stories, a biography, a letter, or an ethical will. Others may dictate their thoughts aloud to someone who will write for them. Some may wish to relay the meaning they have found in life by speaking directly to loved ones or making a recording. Still others may desire assistance in making a scrapbook or photograph album that captures something of their life that they would like to have remembered in years to come.
Ethical Wills: Staying Connected after Death
What is an ethical will? Basically, all wills are sets of instructions. A will of inheritance directs distribution of one’s material property at death and is a set of financial instructions. A living will directs which treatments a person wishes to accept and refuse near death and is a set of medical instructions. An ethical will encapsulates the wisdom a person has gleaned in life and is a set of spiritual instructions for those they leave behind.
An ethical will summarizes a person’s journey in life, their values, and their closing wishes. It can be general or specific, short or long. There are no rules for developing an ethical will, but there are simple guidelines. Although ethical wills are classically thought of as written documents meant to be shared with loved ones, the wisdom they hold may also be disseminated verbally (as in the Bible). In today’s world, this often takes the form of audio and video recordings, without being formally named as such. In any form, creating an ethical will gathers and names the wisdom acquired over a lifetime. Leaving this spiritual legacy for heirs, friends, or caregivers can have a positive impact on all involved. Both patients and loved ones may benefit from decreased feelings of loss and isolation, as well as an increased sense of meaning, connection, and well-being.
Ancient Roots of Ethical Wills
For many people, the concept of an ethical will is appealing, even when it is not named as such. Leaving behind closing wishes, values, and spiritual instructions for heirs is an ancient practice, and early examples are described in the Bible. For those who would like to learn more about these roots, several Biblical references follow.
In Genesis: 48–49 , Jacob offers parting words about what he sees for the life ahead of each of his sons, as well as burial instructions for himself. In Deuteronomy: 33 , Moses speaks to the tribes of Israel. Moses discusses the journey of the people, with God accompanying them, and he blesses each of the tribes individually. In I Kings 2: 2–4 , King David speaks to his son Solomon and gives him instructions for spiritual and moral fortitude. Today, ethical wills are used for these same purposes—to pass on wishes, guidance, values, and life lessons—to bless those that follow.
Sample Questions for Ethical Wills
Following are some suggestions for questions to answer when writing an ethical will.
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What have you learned from life?
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What values, wisdom, or life lessons would you like to pass on?
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What is important to you?
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What would you want your loved ones to remember about you? About life? About themselves?
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What do you want your grandchildren and great-grandchildren to know about your life?
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What are your hopes and dreams?
Energy Work
Some people experience their spiritual connection to the greater world in a physical way, through their body. Many who meditate and pray or practice physical disciplines, such as running, yoga, knitting, or tai chi, report a feeling of calm, clarity, and wholeness permeating their body both during and after the activity. For those who no longer have the capacity to engage in these forms of spiritual connection but who still desire a way to be filled with the sense of balance and strength they bring, there is energy work, experienced through the laying on of hands.
As far back as the Bible, there are myriad examples of the healing power of touch, or the laying on of hands. Today’s medical world offers treatments based on this real phenomenon. Continuing education programs in nursing teach healing touch and many health professionals, including physicians and chaplains, study the art of Reiki. (Although other types of energy work abound, only two are named here.) Practitioners are trained to place hands either very lightly on the patient or even slightly above the patient. During and after treatments, patients often report an internal sense of wholeness and balance returning. Other benefits patients express include feelings of soothing, calm, and well-being.
When does energy work seem appropriate for spiritual care? Consider Susie, a woman in her 40s who has cancer. Susie was raised in a religious home and attended private religious schools, but she never related to the beliefs and practices she was taught. As an adult, she did not find herself drawn to any faith traditions. Now very sick and home-bound, conserving energy by limiting her movement and speaking, Susie longed for a way out of her spiritual isolation. When she described the sense of wholeness she used to experience when exercising outdoors, and how she wished desperately to return to that feeling, I asked Susie whether she would like to sample energy work. Anxious to try anything that would not drain her resources (as she found that talking did) and wanting physically to feel the comfort she described as “prayer flowing through her body,” Susie readily agreed. A Reiki practitioner (who was also a registered nurse) was dispatched to her home to work with a laying on of hands, both directly on and slightly above the body. Susie felt spiritually connected and calmed during the first treatment and asked the nurse to return for regular treatments. During the second and third visits, Susie began to describe her fears about the stage she had been so surprised to reach with her illness—one of watching her body fragment and disintegrate. The practitioner continued the treatments and witnessed Susie’s return to wholeness in spirit.
Susie was someone who connected to her spirituality kinesthetically, had extre-mely limited energy for talking, and did not relate to traditional religion. This made her an excellent candidate for at least a trial with energy work. Although indivi-duals differ in how they experience their spiritual connection to something larger, the longing for that connection is virtually universal. Chaplains creatively seek to access and provide resources that facilitate meaningful connection to that which is greater, for everyone.
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