BY: REV. HENRY BYEKWASO
Ministering to patients and families in the intensive care unit (ICU) at Saint Joseph Regional Medical Center for the past eight years has been a challenging experience. Most of the patients admitted to the ICU are either unconscious or unresponsive due to serious illness or injury, and consequently I find myself spending more time with family members than I do with the patients. I support and assist families as they struggle to cope with stress and tragedy and, in some cases, help them to accept the fact that their loved one might die. Recently I worked with a husband whose wife was dying; the family had decided to discontinue treatment. He expressed his impatience at her continued suffering and asked me, "How can I pray for my wife to die?" I suggested that it might be easier to place his wife in God's hands, asking God to do what was best for his wife and give him and his family the courage to accept God's will. He said, "I think I can do that."
The ICU lends itself to the dehumanization of patients, families, and staff. Celine Marsden writes: "Although not inherently dehumanizing, ICU technology promotes values of efficiency and effectiveness which, in the extreme, can depersonalize and dehumanize the operators and recipients of that technology."1 Marsden claims that dehumanization and depersonalization are kept at bay only through the caregivers' actions, which reflect respect for people. In light of this I challenge myself to interact with unresponsive patients by addressing them just as I do those who are alert and able to respond. I try not to refer to patients by room or bed number but to call them by name. After I introduce myself, I explain why I am there. Before I pray, I may say, "I am going to say a prayer with you," or "I am going to celebrate the sacrament of the sick with you." If family members are visiting, I tell the patient who is there and that we are all going to pray together.
I encourage family members to treat patients the same way. For some people what's happening may be so overwhelming that they have nothing to say to the patient, so I suggest they just go in the room and remain silent in prayer, or hold the patient's hand. Visiting family members can also tell the patient "We love you," or "We are praying for you." Twenty years ago, when I was admitted to the ICU after being injured in a motorcycle accident, my father came to see me and just stood there and said nothing. I wanted to tell him, "Please say something," but I could see by the look on his face that he was very scared and worried that I might not survive. I also encourage family members to include the patient in their conversation. They may talk about the things they will do after the patient recovers, or tell the patient about the pets at home.
As chaplains and caregivers, we should do all we can to support families of ICU patients. An orientation to the ICU can help alleviate stress and anxiety, and at Saint Joseph Regional Medical Center, a brochure for family members explains unit procedures. A patient's primary nurse identifies for the family members the staff involved in the patient's care and a list of the patient's physicians.
Nurses and chaplains may be asked to provide the same information to the family more than once, since many family members are so worried about the patient that their ability to listen attentively is diminished. But the importance of providing information to family members regarding the patient cannot be overstated. Information, once obtained, allows family members to begin the coping process.
In critical situations when patient care is a priority, it can be difficult to satisfy the needs of the family. That is why it is important to make an advance assessment of family expectations and needs. As Carol Olson Long says, "It is much easier to negotiate expectations in advance than it is to try to explain to dissatisfied families that they expected too much."2 One question is whether the family wants to spend the night, especially if they are from out of town. Saint Joseph's Medical Center has two sleeping rooms for families in the ICU, one of them equipped with a bathroom and TV. There is also a large waiting room and a consultation room available for families. Some hospitals give family members pagers so they may get some fresh air or run an errand without worrying that they might miss a call from the ICU.
The consultation room is mainly reserved for critical times when a particular family needs to be isolated for more privacy and confidentiality. Such times may be:
- When the family first arrives
- When the patient becomes unstable or is under a code blue
- When the patient is dying
- When the family is angry
- When a family conference is necessary
The ICU nursing staff at Saint Joseph Regional Medical Center is more flexible at critical times in allowing families to be with the patient. As Long has noted, "The crisis may be based on a situation which is insignificant to the nurse or chaplain, yet it is significant to the family and thus needs to be addressed."3 In many cases the family wants intelligible information about the condition of the patient and whether he or she has a chance to survive.
As caregivers in the ICU we always try to maintain a balance between the technological and the human. Part of this is maintaining good communication between the nursing staff and family members; allowing families to spend time with the patient as much as possible; remembering that all the people involved in the ICU are human beings; and treating each other accordingly. The chaplain is in the middle of this interaction as a counselor, a steward of human dignity, an intermediary, an advocate, and a minister. When these various roles are properly carried out, the chaplain becomes an intrinsic member of the interdisciplinary team involved in the care of both the patients and the family members on the ICU.
NOTES
1. Celine Marsden, "Family-Centered Critical Care: An Option or Obligation?" American Journal of Critical Care, November, 1992, p. 116
2. Carol Olson Long and Diane Sturdy Greeneich, "Family Satisfaction Techniques: Meeting Family Expectations," Dimensions of Critical Care Nursing, March-April 1994, p. 104.
3. Long and Greeneich, p. 105-106.
Fr. Byekwaso is staff chaplain, Saint Joseph's Regional Medical Center, South Bend, IN.