Although she receives medication for her abdominal pain, Nina prefers to use guided imagery and meditation to assist with pain control. A nurse, noticing Nina grimacing and touching her surgical wound, asks her if she would like something for the pain. No, Nina replies. Then, "Why is this awful thing happening to me? Why do I have colon cancer?" The nurse hesitates, searching for a reply. Finally she asks, "Do you want me to call the chaplain?" Nina pauses before answering. "No, I'll be OK. I just need to connect with my Higher Power, so I can push the pain out."
Spiritual care for people facing life-threatening illness has become a hot topic in health care over the past few years, but is a topic about which there are many questions. Based on interviews with dying patients, here are several points of spiritual caregiving to keep in mind:
1) Spirituality and religion are not the same thing. Spirituality may be defined as the characteristics and qualities of one's relationship to the transcendent and to others in one's life. It may or may not be expressed or experienced in religious terms. A religion is a specific set of beliefs about the transcendent that uses particular language to describe spiritual experiences. It is a community sharing key beliefs, as well as certain practices, texts, rituals, and teachings. By declining to identify with a particular religious community, one may say that he or she is spiritual, but not religious.
2) Spiritual care is not just the province of pastoral care providers. Chaplains and pastoral counselors are professionally trained spiritual caregivers, typically representing organized religious traditions. Other healthcare practitioners, however, can provide spiritual care and support for people facing life-threatening illness. Indeed, many patients are open to such support from nonclergy caregivers.
For example, Nina seems to have a spiritual orientation, but for whatever reason she rejects the referral to a hospital chaplain. Possibly all Nina wanted was her nurse to say, "I'm sorry; this must be hard for you. You must be scared. How are you dealing with all of this?" Genuine human concern and a few minutes of time can form the basis for further conversations as Nina struggles to make sense of what's happening to her. This is not to suggest that accountability standards for spiritual caregivers are unnecessary. Not every expression of spirituality is positive, and not every self-appointed caregiver is adequate for the responsibility of such caregiving. On a well-functioning healthcare team, chaplains often coordinate the spiritual care and support that is provided by various team members.
3) Patients share several common spiritual needs. The need to love and be loved, to experience forgiveness and extend it to others, and to find meaning and purpose in life and hope for the future are among these. The ways in which these needs are met for any one patient are very personal, but there are two things that caregivers can do to provide spiritual support and care. The first is to listen—carefully, sensitively—to the dying person. The second is to respond appropriately and genuinely, person to person. Let's look at each of these.
Listening: Patients say time after time, "Please, listen to me." Everyone doesn't experience the dying process, or process his or her dying, in the same way. This point undercuts any characterization of "the good death" as one size fits all. Therefore, one must listen carefully to hear what's going on behind the patient's verbal or nonverbal communication. When a patient facing the end of life talks, caregivers need to listen.
There are a number of barriers to careful listening. Often healthcare practitioners' own anxieties or fears about dying can interfere with careful and attentive listening. It's common for many people to avoid topics that make them feel nervous or uncomfortable, or to talk a lot as a way of feeling more in control of the situation. Once caregivers become comfortable with their own concerns about death and dying they will be better able to hear the other person's expressions of anxiety.
Predetermined purposes may also create barriers to listening. Advance directive forms, for example, don't cover everything when it comes to end-of-life care. Physicians or nurses may become so focused on securing the signature that they neglect the conversation about end-of-life concerns with patient and family.
Responding: As with any medical intervention, the first rule of spiritual care should be "do no harm." It is improper to impose any personal religious or spiritual belief on a terribly vulnerable patient. Also, caregivers often feel that a dying person ought to be talking about dying or spiritual matters, and that the person's refusal to do so is "denial." In these situations, the need to talk about dying may be the practitioner's need—not the patient's—and usually arises from the practitioner's feeling of helplessness. The practitioner who respects the patient will simply be present, allowing the patient to decide what to discuss and how to die.
Second, it is not uncommon for physicians and nurses to feel frustrated and unable to find appropriate words to respond. Perhaps they are not religious believers, or perhaps they feel that tolerance for others' spiritual beliefs should elicit only respectful silence. Yet the language and symbolism of spirituality, or religion, frequently convey vital information to the caregiver about patients' or families' inner experience—what they are going through emotionally, mentally, and spiritually. It does not help when dialogue comes to a halt because patients and families express what they are going through in spiritual terms.
Some rules of thumb for keeping the dialogue going:
A) Set aside intellectual judgments about the truth or falsity of patients' spiritual claims or assertions, and treat spiritual assertions or requests as code or symbolic communications. Make the assumption that if you shared their life experiences and histories, you might embrace such beliefs. You can listen through faith assertions and respond to the disclosures of their inner experiences through those assertions.
B) Talk the other person's spirituality, not your own. Respect for patients as people struggling to find their way through personal crises demands that we let them have center stage. Dying people are extremely vulnerable; even the slightest hint of spiritual persuasion or coercion should be avoided.
C) Asking questions to further your understanding is a good way to keep the dialogue going, as it conveys respect and an interest in maintaining the connection.
