Nursing 619: The Role of Family in the Critically Ill

Family plays a very significant role in the life of a critically ill patient. Being critically ill can bring about many emotions that may have never been experienced by either the patient or his or her family. It is not easy for any patient, especially one with a serious illness, to spend an extended amount of time in a hospital but with family by a patient’s side, perhaps the patient’s length of stay will shorten and his or her quality of life will greatly improve. It is for these reasons that it is important for the healthcare team to allow the family plenty of time to spend with the patient, educate the family on a patient’s care, and to not only address the needs of the patient, but to attend to the needs of the family also.

In the book, Bed Number Ten by Sue Baier, Sue, a woman who is diagnosed with Guillan-Barre explains what it is like to be an immobile patient in the ICU. Along with the painstaking exposure that Sue had in the hospital, she also illustrated for the reader the role of her husband, daughters and mother during the time she spent in the hospital. Given her situation and the many issues she was faced with although already difficult to handle, Sue would have had even more difficulty if it had not been for the ongoing support from her family.

The issue of the role of family in the critically ill patient is very important in professional practice when delivering care to patients, it is very likely to see family along with the patient. In the United States, healthcare personnel works in a culture in which family is a central role in any person’s life. Families are built upon caring relationships and when anything happens with one member, the others cope by relying on each other and being there to support the other family members. It is crucial for healthcare workers to include the family and coach them in caring and providing treatment for the patient. The patient in the hospital although he or she is the one in need of medical attention, the patient is not the only one who is in need of assistance. It is crucial for the family to recognized and seen as present rather than being pushed aside and having the patient be the only priority for the healthcare team.

A family is a durable source of security and stability for any person, especially for a patient who is critically ill (Beckmann Murray 1997). Family is an important part in any person’s life and will always serve as a form of comfort and support for its members. Some tasks of a family include, creating a sense of family loyalty, providing social togetherness, providing relationships within the family that foster security, support, encouragement, motivation, morale and creativity, and helping its members to cope with crises (Beckmann Murray 1997). Sue’s family did exactly these things for her. While in the ICU, Sue’s family would visit as often and as long as was allowed to help Sue through the unyielding days she spent at the hospital. With the support and visitations of Sue’s family, she found it much easier to cope with the long hours of the day and the terrible experiences she had to endure (Baier 1995).

A family system is endlessly adaptive yet is strongly influenced by the surrounding environment (Beckmann Murray 1997). Adapting to new situations is a major function of the family especially helping in its growth and development throughout life as its members change and also develop. These adaptive mechanisms can be seen as a family’s way of coping with stressors. Each mechanism demonstrates a way in which the family maintains an internal balance to further assist the family in dealing with external stressors or crises (Beckmann Murray 1997).

For example, one adaptive mechanism that Sue Baier’s family acts upon is the additional roles played out by different members of the family. When a family member is ill, other family members must adapt by striving to be flexible in his or her roles (Beckmann Murray 1997). In Bed Number Ten, Sue says "Promptly at eleven-thirty, Bill returned. He looked so tired. How could he not be tired? So much to do." (Baier 1995). Because Sue had been stuck at the hospital due to her paralyzing illness, she was unable to complete her normal tasks and because this was so, her husband needed to get them completed for her. To cope with Sue’s illness, but to keep his family balanced, it was necessary for Bill to take on additional tasks each day.

One way in which a family will cope other then relying on the other members and striving to be flexible in roles, families learn to cope by seeking out information (Beckmann Murray 1997). When a loved one is in the hospital, families like to understand what is going on. It is critical to keep the family informed of their loved one’s health status and keep them updated on all the information necessary for them to know. Because the ICU can be so fast paced at times though, it is sometimes difficult to relay information to family members (Kjerulf 2005). It is important that families are given the chance to ask questions and it is just as important that they receive the answers. Families want to be able to participate in patient care, have the diagnosis and prognosis clarified and they also want to have equipment explained to them so that they too can better understand the experience that their loved one is going through (Fox-Wasylyshyn 2005).

Not only can family play a large role when other family members are away for extended periods of time, but family can also greatly assist the patient while in the hospital. In the ICU, family can serve as a tool for the patient, facilitating better communication and increasing the patient’s ability to do things (Engstrom 2007). This was very true for Sue Baier. When at her worst stage of her illness, Sue was unable to move any part of her body with the exception of her eyes. It was through her eyes that Sue spoke with her husband and at times her healthcare providers who would take the time. Many patients may describe the inability to talk people as frightening and scary, but the family becomes interpreters in communication between the patient and others because they can mostly understand what the patient is trying to say or what he or she means (Engstrom 2007).

"‘Did you sleep well last night?’ How do I answer him? Frantically I flutter my eyelids. ‘No, Sue, one blink for yes or move your mouth for no.’ Oh, Bill, always by the rules. But the rules have changed. Again I blinked repeatedly. He studied me for a moment, and again I blinked my eyes several times. Then he understood. ‘You can’t move your mouth can you? Is that what you were trying to tell me?’ One firm, elaborate closing and opening of the lids. Yes. ‘Well, then, how about one blink meaning yes and two for no?’ (Baier 37)."

Although the family has a better chance of understanding what a patient wants, it is also true that the family may not understand exactly what the patient wants at times. This may put extra stress on the patient and make him or her feel like giving up (Engstrom 2007).

Having family by a patient’s side while staying in the hospital can drastically reduce the amount of anxiety a patient encounters. The onset of an illness can cause unpredictability due to the unfamiliar world around a patient, but with family around, a patient can feel safer and more at ease (Engstrom 2007). Having family nearby can give a patient a familiar face when the staff is never the same, failing to provide a constant or familiar face. In the study, "Receiving power through confirmation: the meaning of close relatives for people who have been critically ill", researchers found that patients felt happier when family was near, but when family had gone home, patients described feelings of loneliness and fear while also feeling as though he or she was trapped in bed. Researchers also found that much like Sue, while family members were gone, patients would count down the time until they would return (Engstrom 2007). "My tears washed away the image of him leaving. When I blinked them away, he was gone. Only the clock was still there. Seven forty-two. Three hours and forty-eight minutes until Bill would return." (Baier 22).

Having family members around while a patient is in the hospital can supply the patient with consistence in an environment that is otherwise inconsistent. With family by a patient’s bedside, he or she has a familiar face which can make a patient feel more comfortable, safer and less alone. It is significant for patients to be able to experience the company of a familiar face most importantly because a patient’s healthcare providers may always be changing due to rotations of the hospital personnel. The repetitive changing of nurses especially has a negative effect on a patient’s quality of life (Kjerulf 2005). If a patient were to have a more consistent nursing staff, both the nurse and the patient could become more comfortable in working with one another and patient outcomes could be improved in a much shorter period of time.

When family is not around, patients exhibit much more anxiety than when family is present. The study, "Receiving power through confirmation: the meaning of close relatives for people who have been critically ill", researchers found that patients felt as though they were losing control and could die when family was not present (Engstrom 2007). In Bed Number Ten, Sue says "I was totally at the mercy of people I did not know and with whom I could not communicate. People who didn’t even seem to care" (Baier 32). It is important as a healthcare provider to make a patient feel as comfortable as possible and never feel as though they are surrounded by strangers and scared of what could happen to them. As healthcare providers, we should be accommodating to patient’s needs and supplying to him or her a safe environment where the patient can feel as though healthcare providers are competent and will provide the best care possible.

In encountering a life changing event such as becoming critically ill, a patient will feel like he or she has lost all control due to such a disruption, but with family nearby, patients are given a reason to continue with his or her struggles. Family is vital to an ill patient. Family gives a patient motivation and a reason to continue to fight through the endeavors he or she may come into contact with. The support of a family can demonstrate to a patient exactly what his or her existence means to the other members of the family then in turn giving the patient the will to live when he or she may feel as though all is lost and giving up is the only option (Engstrom 2007). This constant reminder of how much a family cares for a patient is very important in giving the patient the power to want to become healthy again. Family may give the patient courage to feel as though he or she can continue on and make it through this difficult time (Day 2006). Patients feel that because family demonstrated that they cared so much, patients did not want to fail them by giving up since family was the most important people in the patient’s lives during their time of illness. Patients came to realize that the family still expected something from them and that they needed to fight their illness to fulfill the family’s expectations (Engstrom 2007).

Both patient and family needs should be attended to when setting up a plan of care. Families feel as though healthcare personnel can assist best in their coping by allowing them to be included in the patient’s care and by addressing the family’s needs also (Fox-Wasylyshyn 2005). By addressing a family’s needs, healthcare teams can promote knowledge and assist the family in dealing with the crisis at hand. Patient recovery may also be promoted when the healthcare team comes together with the family to understand the issues at hand (Fox-Wasylyshyn 2005). A stress-free environment is best for a patient who is critically ill and a lot of stress can be diminished if both the family and healthcare team are on the same level and understand what is going on with the patient and his or her care.

Allowing the family to be present while a patient is in the ICU is very important and can promote family education and decrease anxiety (Day 2006). Having family near when a patient is critically ill can greatly increase a patient’s quality of life (Engstrom 2007). If healthcare providers were to actually keep the patient’s health as their top priority, then things may go more smoothly in the ICU, but without cooperation and collaboration between the family and healthcare providers, situations may become more difficult to handle. It is important for healthcare personnel to recognize the positive influence that a family’s presence can have on a patient’s state of health. Rather than forcing families out of the room and allotting a certain amount of time for visitation, healthcare workers should be encouraging the presence of family.

"The minutes passed so quickly, and too soon Bill was telling me it was time to go. They had rules, he explained. Only three visits a day-and only fifteen minutes at a time. As weak as I was, I clung desperately to his hand and begged him not to leave. ‘It’s the rule, Sue. Besides, they say that any longer a visit would only tire you.’ The rule, the ultimate answer." (Baier 22).

In the article, Family perceptions of end-of-life care in an urban ICU, families said that unit visiting hours were too limited and did not allow for families to spend enough time with their loved ones, and that if visitation policies were to be more flexible, then access between the family and patients could be greatly maximized (Kjerulf 2005).


In allowing a patient’s family to spend more time in the ICU, healthcare providers may begin to learn more about who the patient is as a person. In order to fully understand how to care for a critically ill person, one needs to be able to recognize and consider the human experience of illness (Engstrom 2007). Any healthcare provider can begin to understand the human experience of a given situation as long as that healthcare provider sees the patient as another person rather than just somebody who is sick and needs medical attention. A family makes up a very large portion of who somebody is and one can learn a lot about a patient by spending time with his or her family. By having the knowledge about a patient’s experience, one can greatly improve the quality of care being provided (Engstrom 2007).

It is important for healthcare workers to begin to consistently be involving the patient’s family in care. In doing so, healthcare workers will need to stop seeing a patient as just an individual who can be separated from his or her family and instead, families should be treated along with the patient (Day 2006). Healthcare workers need to stop looking at just the patient as the recipient of treatment and begin to see the family as also in need of and receiving care. In many cases, a critical care team may only focus decision making and care planning on the individual rather than collaborating with the patient’s family and encouraging the involvement in a the patient’s care.
The article, "Family involvement in critical care: shortcomings of a utilitarian justification" states that:

"To subscribe to the idea that the critical care team alone can provide a cure while treating the patient as a radical individual is a dangerous mistake that denies the curative influence of the family and the importance of the patient’s involvement in family relationships." (Day 225).

This quote alone is very powerful and sends out a strong message. It is absurd for a healthcare team to believe that they have all the power in the world to cure a patient of a critical illness without any consideration to family and the therapeutic power it may have on a patient’s health status. Healthcare teams need to begin to see that there is indeed a lot of things that they can do to improve a patient’s health, but they also need to consider the smaller, simpler things that a patient will also benefit from.

After having done the research for the role of family in the critically ill patient, I have learned exactly how strong the position of family is. I now feel as though I will look differently at family gathering in a patient’s room. Before there had been times when I would see the family with the patient and think to myself that there must be other things going on in the family’s lives that should be preventing them from spending so much time in the hospital. Now though, I understand more clearly that family is a strong bond that is difficult to break because of the many emotions and relationships that have evolved over time. There is no reason for family to not be seen as important when providing care to a patient. In fact, family is one of the most critical factors in improving a patient’s health.

Family is significant in improving a patient’s health status. Family is the best thing that a patient can have around during this difficult time because family is always a source of support and stability, encouragement and motivation (Beckmann Murray 1997). Patients in a study stated that after having shared the experience of being critically ill with their families, they felt as though their relationships were confirmed, relationships had grown stronger and they felt as though they cared more for each other (Engstrom 2007). Not only are these family relationships important in critically ill patients, but relationships between families and healthcare teams need to be developed for optimal outcomes (Kjerulf 2005).

Both the patient and his or her family should be cared for during the time of hospitalization because they are in reality a single unit. A family unit cannot be torn apart or seperated and have each member be treated individually because the relationships in the family are so concrete. This is why a patient’s family should be allowed to stay at the bedside to provide support and to be involved in patient care. Healthcare providers need to allow families time to spend with patients along with allowing them to be involved in a patient’s care by educating the family and including them. A family supplies a therapeutic regime which can greatly improve a patient’s health. Because the presence of family can improve a patient’s outcomes, it is important to keep the family in mind as a method of treatment and whatever is good for the patient should be seriously considered and applied when possible.



References
Baier, Sue. (1995). Bed Number Ten. New York: CRC Press.
Beckmann Murray, R., Proctor Zentner, J. (1997). Health Assessment and Promotion Strategies: Through the Life Span. United States of America: Appleton & Lange, A Simon & Schuster Company.
Day, Lisa. (2006). Family Involvement in Critical Care: Shortcomings of a Utililitarian Justification. American Journal of Critical Care, 15(2), 223-225.
Engstrom, A., Soderberg, S. (2007). Receiving Power Through Confirmation: The Meaning of Close Relatives for People Who Have Been Critically Ill. Journal of Advanced Nursing, 59(6), 569-576.
Fox-Wasylyshyn, S., Williamson, K. (2005). Family Perceptions of Nurses’ Roles Towards Family Members of Critically Ill Patients: A Descriptive Study. Heart and Lung, 34(5), 335-344. Kjerulf, M. et al. (2005). Family Perceptions of End-of-Life Care in an Urban ICU. Canadian Association of Critical Care Nurses, 16(3), 22-25.