29.1 Initial Encounter with the Neurocritical Care Unit

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 intensive care unit. 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. 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 sinking 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 they begin to search for solace and understanding.

29.2 The Role of the Neuroscience Team

During the initial meeting with the patient and family, the neurointensivist is invariably sharing bad news with individuals who have usually never met him or her before—this is the nature of acute care medicine, which brings the patient, family, and neurointensivist together due to some health tragedy. The patient and family feel especially vulnerable in the early phases of the doctor-patient, and doctor-family relationship, and this is the time when building trust, offering hope, and nourishing spirituality are most important.

While many neurosurgical intensive care unit (NICU) patients go on to have good outcomes, the primary mission of the NICU physician and team is to rescue the patient from secondary injuries, while also healing the stressed family by a demonstration of genuine caring and compassion. The neuroscience team meets the patients as they come into the hospital and then adopts them. The neuroscience team becomes part of the patient’s life as the patient goes from the initial computed tomographic (CT) scan, and then directly to the operating room or NICU. The patients are followed daily, not merely seen once a day, but cared for continuously as each patient becomes the mission of the neuroscience team until he or she goes home, is transferred to a rehabilitation facility, or passes away. When these patients leave the hospital their care is not ended; the amount of care changes slightly, becoming surpassed by the care provided to patients that remain in the hospital. The neuroscience team is committed to each and every patient, providing each with the optimal care. However, given similar circumstances some patients do better than others.

29.3 Family Support

The common denominator for those who do well is support from family. If a patient’s injury or illness is too great, then their destiny is out of the health care provider’s hands. While sharing in the patients’ lives, regardless of outcome, the neuroscience team can make the experience more comfortable and less harsh. There are ways to identify the suffering of patients and their families, and 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 this spiritual distress is often not addressed adequately. ¹ , ² , ³ , ⁴ , ⁵ , ⁶ , ⁷ , 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 families. ⁹ , ¹⁰ , ¹¹ , ¹² , ¹³ , ¹⁴ In fact, a recent survey of top-selling 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 patients’ and families’ spirituality, the importance of spirituality in medical decision making, the role suffering takes with patients, and the effects on health care. Those requirements must be tailored to patients in the NICU.

29.4 Neurosurgical Intensive Care Unit Setting

Unique experiences associated with a stay in the NICU include round-the-clock observation with frequent neurologic exams, intracranial pressure monitoring, electroencephalography, and frequent trips to the CTor MRI scanners. Families will see their loved ones on complete life support with the monitors and machines making their own special noises. This can be very frightening and overwhelming to families whose last memory of their loved one was someone walking and talking. Immediately, the stress level of families is high, and the neuroscience team must be watchful for the signs of that stress. At this time the different teams should introduce themselves and identify the family spokesperson. Also, the current patient’s condition and overall plan should be discussed. These conversations should not include the jargon of the neuroscientist; rather time should be taken to explain the situation in simple, concise, and accurate terms.

29.5 Spirituality

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.” ¹³ Many people identify themselves as being spiritual. ⁷ , ⁸ , ⁹ People 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 an ICU may not even have the strength or ability to care for themselves, even on the most basic levels; their focus may be entirely on survival. The meaning and purpose of their life may be lost to them, leading to emotional distress in the sick and dying, 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 at the same time helping them cope with their suffering. ⁸ , ¹¹

Patients and families may subscribe to the words of David in the Twenty-third Psalm and think that goodness and mercy will follow them always. They do 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 patient health. ⁸ Hope, as explained by Buchman, “is a form of trust in the future, and is often deeply ensconced in a religious cultural matrix.” ¹³ As an extension of this hope, the neuroscientist enters into a relationship with the patient that commits the physician 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 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 psycho-neuro-immuno axis and how spirituality and religion can be a factor in treatment of those who are critically ill or critically injured. ¹ , ⁴ This involves the personal concerns of patients. Some patients’ concerns involve only their faith in a god and the pursuit of heaven. Others are most concerned with interpersonal relationships with families and friends. These things are intangible, but they give hope and reassurance to those who are so troubled. Spirituality, in whatever form it takes, gives people meaning and purpose in life. ⁴ , ⁷

In addressing purpose and meaning, large gains can be made with small efforts by 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 can also help in healing. Recent studies show that for families who had recent deaths and are mourning, adding religious support in the form of scriptural readings along with standard grief counseling can assist these families to recover sooner from their mourning than if they are only given grief counseling. ⁴ Allowing families freedom to seek solace in scripture can reintroduce purpose and meaning when personal values are skewed by grief. This once again illustrates the importance of addressing the spiritual needs of families in critical care situations.