32 John R. Spitalieri There can be no more completely upsetting and frightening event than to find that a loved one has become critically ill or severely injured and has been taken to the hospital and admitted to the neurosurgical intensive care unit (NICU). Suddenly, everything that was stable before has now changed, and the question of our own mortality, as well as that of our loved one, is brought to the forefront. What may have started off as a normal day has had a surrealistic change, as if looking at a drama on television. Expressed thoughts begin to echo: “This can’t be happening, there must be a mistake; either you have the wrong family or the wrong patient, or the wrong diagnoses.” Inevitably, the truth starts to sink in as the physical and emotional pain associated with loss and separation takes hold. These are the times when many questions are asked and few pleasant or satisfying answers are given. The emotional strength of a family is put to task, and its members begin to search for solace and understanding. Many patients have been admitted into the NICU, and many of these patients have had good outcomes. The NICU team meets patients as they come into the hospital and then adopts them. The team becomes part of each patient’s life as the patient goes from the initial computed tomography (CT) scan, to the operating room or the NICU. Patients are followed daily, not merely seen once a day. Each patient becomes the mission of the NICU team until he or she goes home, is transferred to a rehabilitation facility, or passes away. When patients leave the hospital, their care is not ended; only then does the amount of care change slightly, becoming surpassed by those patients who remain in the hospital. The NICU team is committed to each and every patient, providing each with optimal care. However, given similar circumstances, some patients do better than others. The common denominator in those who do well is support from family. There really does not seem to be a common denominator for those who do not. If a patient’s injury or illness is too great, then their destiny is out of the health care team’s hands. Though sharing in the patients’ lives, regardless of outcome, the NICU team can make the experience more comfortable and less harsh. There are ways to identify the suffering of patients and their families, to help with major life transitions, such as recovery, permanent disability, and death. Perhaps addressing the spiritual needs of patients and families could hold another modality of treatment that needs to be explored. At the heart of the spiritual distress of the sick and dying is suffering, and it is this spiritual distress that is often not addressed adequately.1–8 Health care providers have taken on a responsibility to relieve physical pain and suffering. This duty should also include spiritual suffering. Even though spirituality is becoming more recognized and accepted as a part of treatment, not many established guidelines exist for physicians in the NICU for inquiring about the spirituality of patients and their families.9–14 In fact, a survey of leading neurology textbooks showed minimal guidelines for the care of patients at the end of life and in the NICU. Additionally, none of the textbooks had a chapter on end-of-life care.14 There is a need to discuss the approaches for inquiring about a patient’s and family’s spirituality, the importance of spirituality in medical decision making, the role of suffering, and the effects on health care. Those requirements must be tailored to patients in the NICU. NICUs are specially equipped hospital units that are organized to give highly specialized care to patients who suffer from serious brain and spinal cord injury or illness. The NICU team coordinates with other specialized services, such as trauma, cardiology, and infectious disease. The combination of these specially trained services provides a high level of care, continuous observation, and monitoring with the help of nurses and therapists. There are no specific admission criteria for the NICU. Admission is based on a physician’s finding that close observation or specialized monitoring and/or therapy is necessary. There are several broad categories of patients who present to the NICU: trauma, tumor, hemorrhage, and stroke. Although many patients present with one initial finding, they may have an underlying disease, such as a brain tumor. In any event, there are hard realities that patients and their families have to confront. Spirituality has been defined as “that which allows a person to experience transcendent meaning in life. This is often expressed as a relationship with God, but it can also be about nature, art, music, family, or community—whatever beliefs and values give a person a sense of meaning and purpose in life (p. 129).”13 Many people identify themselves as being spiritual.7–9 They feel that, on some level, their life has meaning and purpose. Illness and injury can cause a threat to the individual’s spirituality.7,9 Patients admitted to the NICU may not even have the strength or ability to care for themselves, even on the most basic levels. Here there may only be an attempt at survival. The meaning and purpose of their lives may be lost to them, leading to emotional distress in the patients, as well as in their families. At this time, spiritual counseling can benefit patients and families the most by allowing them to express their concerns for the future while helping them to cope with their suffering.8,11 Patients and families may not think of the possibility of bad things happening to them, or they may think that once bad things do happen, a miracle will occur that will deliver them from their suffering. It is human nature to have hope, and hope affects health.8 Hope reflects faith in and anticipation of a better future. As an extension of this hope, the NICU team enters into a relationship with each patient that commits physicians, along with other members of the health care team, to doing the most to return the patient to a state of health. This relationship takes on the properties of a covenant and includes shared hope, shared risk, and mutual respect.13 The era is approaching where spirituality is having more clinical relevance, for example, when coping with illness and death. Patients and families are basing health care decisions on their religious beliefs.4,7,8 Medical science is still uncertain if spirituality has an effect on health, but several sources are investigating the psychological-neurologic-immunologic axis and how spirituality or religion can be a factor in the treatment of those who are critically ill or injured.1,4 This involves the personal concerns of the individual patients. Some patients’ concerns involve only their faith in God and the pursuit of heaven. Others are most concerned with interpersonal relationships with families and friends. These are things that are not tangible, but give hope and reassurance to those who are so troubled. Their spirituality, in what ever form it takes, is what gives people meaning and purpose in life.4,7 In addressing purpose and meaning, large gains can be made with small efforts by the health care providers. For all of the complex treatments of a patient’s illness, there does not have to be a complex course for spiritual treatment. Even simply providing access to spiritually oriented activity can be uplifting to individuals and also help in healing. Studies show that for families who had recent deaths and are in mourning, adding religious support in the form of scriptural readings, along with standard grief counseling, can help these families to recover sooner than if given only grief counseling.4 Allowing patients’ families the freedom to seek solace in scripture can reintroduce purpose and meaning when personal values are skewed by grief. This illustrates once again the importance of addressing the spiritual needs of families when in critical care situations. In the pursuit of a particular patient’s health and alleviation of suffering, spirituality needs to be addressed, not just once at the beginning of care but throughout the patient’s stay. It is important to ask questions to help understand and anticipate the needs of the patient. Although inquiries should be welcomed, the health care professional should be careful not to impose his or her own beliefs; this is best done by keeping an open mind to other cultures and religions. Also, respecting a patient’s and family’s wishes and values, especially when it comes to end-of-life matters, will help with this goal. Ask if a patient wants a visit from a chaplain; do not wait for the patient to inquire, as he or she may be unsure whom to ask or how. Health care providers may feel odd discussing spiritual matters, or they may think that these types of discussions are out of the scope of treatment. Some may feel questions regarding spirituality will be seen as too personal or be interpreted as prying. Numerous studies have showing that such are actually welcomed by patients and families, and that they also help the patient–family–physician relationship.4,6,7,12,13 In fact, many patients describe themselves as being religious but also report that, the majority of the time, their doctors have not asked questions of spirituality as it pertains to medical decision-making.4 The NICU team should also be on the lookout for certain phrases that imply spiritual influence in their patients and families. Patients who speak, for example, of being “blessed” or “tortured” may actually be giving clues to their religious nature.7 In essence, it is helpful to take a spiritual history of the patient and family. Like most other aspects of the patient’s history, there are aids for the efficient gathering of the spiritual history. A screening tool, developed by Puchalski and Romer, helps the health care provider explore the spirituality of patients and families.13 The acronym FICA represents the types of questions to ask patients: faith in general (F), the importance of the patient’s individual faith (I), the patient’s identification with a community of faith (C), and how the patient wishes health care providers to address spiritual issues (A). Other questions that are helpful and comforting include those related to hopes and expectations, as well as fears of the near future that are centered on issues of palliative care and end-of-life issues. These particular types of questions are actually aimed at the spiritual suffering of patients and their families.4 Screening questions, as suggested by Dunn,7 that can be used during the spiritual assessment include the following: Nurses have the most exposure to patients and families and form bonds with them. These bonds can be drawn on to elicit communication and cultural information. Nurses are the “ambassadors” who relay information between individuals in the patient–family–physician relationship.4,10,15,16 As described by Buchman et al, “When patient, family, and caregivers share common perceptions and goals, this particular role is often simplified to that of translator, ensuring that communication is timely, accurate, and consistent. In contrast, when the perceptions and goals are dissonant, the brokerage role often requires nurses to assume additional responsibilities of arbitration and diplomacy (p. 667).”4 In an attempt to identify the subtleties of suffering, Hinshaw9 describes four domains of pain: physical pain, psychological or emotional pain, social pain (pain associated with fear of separation from loved ones), and spiritual pain. These are four areas of potential suffering for patients in the NICU, and integral to treatment is the easing of their suffering no matter what form it takes.5 What may prove daunting to health care providers is effectively treating spiritual pain when encountered because it is not identified, and often health care workers are ill prepared to treat this type of suffering when discovered. The NICU team has to identify the forms of distress and suffering in patients and their families to provide well-rounded care.9 Research is showing that a patient’s spirituality can play an important role in ameliorating the sequelae of severe illness.2 Spiritual suffering is ever present in the sick and dying, and, if not looked for, it will not be recognized when it manifests itself.5,7 Those who suffer spiritually may be losing hope, may be losing the meaning of their lives and self-worth, and may be doing this in silence and unnecessarily.7 Much of a patient’s suffering begins with worry about an uncertain future. For example, patients fear their physical and emotional symptoms may become too much to bear.5 Also, families do not want their loved ones to suffer and often inquire about pain medications, specifically asking the dosing and frequency of administration. Key to this is understanding that suffering is different from patient to patient; what causes suffering in one patient may not be a cause of suffering in another.5 Suffering is a state of distress that can occur in all patients, but this distress is even more severe when it occurs in NICU patients. Patients suffer when they feel their integrity and autonomy are threatened and feel that their end is near. This is easily understood when considering the thoughts of patients on ventilators, when they have intravenous lines and electrical leads all over their bodies. This is frightening to both patients and their families. Patients will continue to suffer until the threat is ended or their integrity is restored.5,9 It is part of the NICU team’s duty to restore patients’ sense of autonomy and to calm their fear and thus reduce their suffering. A goal of treatment is comfort. The level of pain is asked on a regular basis and rated on a scale from 0 to10, with 10 being the worst. Pain medication and sedation are used to help make patients more comfortable. Doctors and nurses try to use the least amount necessary to alleviate patients’ symptoms so as to not overmedicate, which could potentially mask the neurologic exam. At times, especially in patients who are intubated, sedation is kept so high as to make a patient unresponsive. Intubated patients with severe head injuries may be unresponsive regardless of the level of sedation. This may be upsetting to family members, and it is therefore important to reassure them of the necessity for treatment, as well as the quantity of treatment. Using narcotics and sedation for pain management may be insufficient to relieve all of a patient’s suffering. These medicines can help control the physical symptoms of the severely injured or terminally ill, but they may not relieve all of their suffering.9 Addressing the issues of suffering may allow patients to feel that they are regaining some control over their condition and empower them to ease their own suffering.4 A scale from 0 to 10 can also be adapted for stress and worry. Patients and families can be asked simple and direct questions to diagnose sources of pain, such as, Are you suffering? What are your concerns and fears? and What is it that worries you the most?5 Even just the simple effort of asking the questions and listening to the answers can soothe suffering.5,9 There are specialists in the hospital who routinely handle spirituality and religious aspects of patient care. The hospital chaplains are sources of guidance, comfort, and support to the critically ill and their families. There will often be requests for chaplain and prayer services for the ill. Many families believe in the power of prayer.4,8,13 There are chapels for families to go to and reflect, and chaplains are available in every hospital. Clergy are also available from the communities. Pastoral care is an integral part of health care facilities. Hospitals offer patients the spiritual services of prayer, sacraments, a listening presence, and assistance in dealing with the emotions and questions that come with sickness. These services are provided for both patients and families. Experienced staff chaplains offer sacraments, assist with spiritual care, regardless of faith or religious tradition, strive to visit inpatients and make outpatient visits upon request, and will notify a patient’s own pastor upon request. Many patients turn to their own religious leaders for comfort. There are times when health care is not enough for restoring health. This should be presented to the families succinctly and directly so there will be no misunderstanding. Respectfully and in a supportive manner, patients must be permitted to express their spirituality.4,8,13 Health care workers are aware that, ultimately, no matter the collective effort, patients sometimes die. Those who are terminally ill may die in weeks to years; those who are critically injured may die in minutes to days. Yet there is still potential for healing in the face of death, for both patient and family, and even for the health care team.11 Healing does take place during the process of dying when families gather and can find some meaning to their loved one’s life. Important factors in this process include hope, reconciliation, and assurance that suffering and pain will be controlled for the patient.9,11,16 A critically injured or ill patient who still has his or her faculties is comforted with the assurances of not being abandoned, along with knowing pain and suffering will be treated and minimized. Frequently, family members and patients feel the need for forgiveness or reconciliation, which can be facilitated or mediated by chaplains.9,16 As a patient’s death approaches, the NICU team can shift their priorities from sustaining life to bringing comfort.16 As for terminally ill patients, hospice offers death with dignity and assists with the change in priority to comfort.9 Hospice also can comfort the dying in knowing they will not be a burden to their loved ones and that their life and suffering will not be prolonged.16 It is important to remember that, although NICU patients may not be able to respond to a voice or touch, they may still be able to hear and feel. Families should be encouraged to talk to their loved ones, to hold their hands, and to let them know they are loved. This gives comfort to family members by restoring some sense of control, allowing them to contribute to their loved ones’ comfort. It is also important to help orient patients by telling them who is holding their hand, what day it is, and to update them on the current events of the family. It is best to advise family members to maintain a “good news only” policy, not to relay any distressing information. It is appropriate, for example, to withhold information about the foreclosure on the house or a favorite pet running away. Families who are feeling too emotional should be encouraged to take a break from visiting. Family members should always be informed that there are chaplains available for them and the patient. Spirituality is hard to quantify or qualify. Who is to say how families should react or to what extent they should show emotion? Who can predict how health care workers will respond when placed in similar situations? Patients and their families may not be able to comprehend the new and undesirable realities forced upon them, or to understand the limitations of modern medicine. For these reasons, the NICU team is obligated, as soothers, to be serene and understanding. They must explain, in detail, the complexities involving the patients’ state of health and the level of care being presented. Because it can be particularly important to patients with terminal or chronic diagnoses, the support of hope should fall within the clinical purview of the skilled physician. In times of severe disabling illness, hope may be mediated through ritual, meditation, music, prayer, and traditional sacred narratives or other inspirational readings. Spiritual care in hospice skillfully redirects hope toward caring relationships and higher meaning.4 The NICU team should not pass judgment on patients or their families when it comes to spiritual issues, nor should they try to persuade anyone to change or subscribe to their own beliefs. They should not form opinions or prejudices.7,16 Instead, they should ask often about the importance of faith, any religious issues, and how the team of caregivers can help with these issues.7 The “Principles Guiding Care at the End of Life” were developed by the American College of Surgeons Committee on Ethics and were approved by the board of regents at its February 1998 meeting.3 Spirituality and the assessment of a patient’s spirituality are becoming important features in the care of patients in the NICU. Health care workers must adopt the duty to ease spiritual suffering for patients and their families. Very simple questions can be asked, and the mere asking can show patients a level of compassion in a highly mechanized, alien, and somewhat frightening environment. The NICU team can bring surcease from suffering to persons in need with timely attentiveness to these details.
Spiritual Care of the Neurosurgical Intensive Care Unit Patient and Family
The Role of the NICU Team
The Role of the Family
The NICU Setting
Spirituality
The Patient and Family’s Spiritual History
The Role of Health Care Providers
Suffering
Comforting the Patient
The Role of Prayer and the Clergy
Closure
Suggestions for Families
Suggestions for the NICU Team
Summary
References
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