Page 151 - Hall et al (2015) Principles of Critical Care-McGraw-Hill

CHAPTER 17: Caring for the Family 117

patient centered, which includes family-centered care. Put another way, for family dissatisfaction with ICU care, such as living in the same city
1
patient- and family-centered care is an intrinsic part of the delivery of as the hospital, disagreement within the family regarding care, hav-
high-quality health care. ing a cardiac comorbidity but being hospitalized in a noncardiac-care
Family-centered care is particularly important in an intensive care intensive care unit, and living in a different household than the patient.
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setting because patients are frequently unable to participate in their Conversely, proactive communication as well as respect and demon-
care due to sedation, delirium, and their degree of illness. Thus, fam- strated compassion are important factors improving satisfaction in
ily members frequently serve as surrogate decision makers, a role that families of patients dying in the ICU. In addition, family satisfaction
brings enormous pressure and may result in significant psychological increases with the duration of life-support withdrawal. 10
burden and long-term morbidity. Clinical research has demonstrated
that proactive communication and high level of care for relatives can MEASURING THE QUALITY OF THE
lower their psychological burden and prevent posttraumatic stress dis-
order (PTSD), anxiety, and depression in this population. In this chapter, CRITICAL CARE EXPERIENCE
we will discuss principles of caring for families of ICU patients, an area Because of this close correlation, many authorities advocate that satis-
of evolving importance. faction with care must be a central outcome measure in critical care. 11-13
From a systematic viewpoint of improvement, measurement of the
THE PROBLEM: PSYCHOLOGICAL BURDEN OF ICU experience is a key aspect of quality improvement. In our view,
CRITICAL CARE ON PATIENTS’ RELATIVES measurement of patient satisfaction alone is likely to be systematically
biased and incomplete. First, many patients are unconscious for long
Families of ICU patients are at a surprisingly high risk of developing periods of their ICU stay, related both to their underlying disease and
long-term psychological problems, as well as somatic illnesses, as a to therapeutic use of sedative medications. Second, many patients are
direct result of their family members’ ICU stay and illness. It has been delirious during their ICU stay. Third (and perhaps most important),
demonstrated that up to 80% of families of critical care patients suffer a significant fraction of ICU patients die and are therefore unable to
from deleterious effects from their ICU experience. Family members respond to patient satisfaction surveys. Similarly, patients who remain
2
are at increased risk for anxiety and depression, which may manifest delirious, on mechanical ventilation, or neurologically injured after
during the initial ICU stay of the patient, but may also persist for a long their ICU stay are unlikely to be able to respond to patient satisfac-
time or appear only after discharge or death of the patient. Up to 70% tion surveys. Instruments that measure only patient satisfaction would
3-5
of family members of ICU patients show symptoms of anxiety. Similarly, systematically underreport the experience of these patient groups. And
symptoms of depression are found in up to 35% of all patients, and in up yet we care very much about the quality of the ICU experience in all of
to 50% in families of patients who do not survive. 4,5 these circumstances.
Further, family members are at high risk for PTSD, a particularly It is therefore important to assess and measure relatives’ satisfaction
disabling form of psychological morbidity. Moreover, this may manifest with care in the ICU setting. Because most ICU patients have a fam-
months after ICU discharge of their loved ones. Symptoms consistent ily member or surrogate involved in their care during their ICU stay,
with PTSD can be found in roughly 30% of relatives within 3 months measurement of these family members’ experience is less subject to
after leaving the ICU or after the death of the patient. Some experi- the systematic biases described above. Different instruments are suited
6
ences bring a higher risk of PTSD: rates of up to 50% are found among for this purpose of quantifying satisfaction with care (summarized in
relatives who felt that information provided by the clinical staff were Table 17-1). The Critical Care Family Needs Inventory (CCFNI) was
incomplete, or when the patient died in the ICU. End-of-life decision one of the first questionnaires used for this purpose. However, it did
14
making brings a particularly high risk of posttraumatic stress symptoms not include satisfaction with the decision-making process, an item that
in family members: up to 60% of relatives of patients dying in the ICU has been shown to be of utmost importance. Two other instruments
after end-of life decision making may experience these symptoms, espe- include this dimension: the Critical Care Family Satisfaction Survey
cially if they were involved in the shared decision-making process (80%). and the Family Satisfaction in the ICU (FS-ICU) instrument. The
PTSD in relatives of ICU patients is usually associated with symptoms FS-ICU is a well-validated instrument designed to measure satisfac-
of anxiety and depression, leading to an important decrease in the tion with the critical care experience over different domains. 11,15 Items
quality of life. 3,6 in the questionnaire were generated from a conceptual framework of
patient satisfaction, quality care at the end of life, research on needs
HIGH-RISK SITUATIONS FOR RELATIVES of families, dissatisfaction with medical decision making, among oth-
ers. The Critical Care Family Satisfaction Survey, finally, is a 20-item
TO DEVELOP PSYCHOLOGICAL PROBLEMS questionnaire focusing on assurance, information, proximity, support,
There are different factors associated with the risk of relatives of ICU and comfort. 16
patients developing psychological problems in the short and long term. In addition to instruments measuring satisfaction of family members
These include patient factors such as age of the patient and type of medi- with ICU care, other instruments have been validated to measure the
cal condition (eg, end-of-life situations), relatives’ factors (eg, vulnerabil- burden of families in domains such as anxiety, depression (HADS), sub-
ity and relationship with patients), and health care provider/institutional jective distress (IES, IES_R), and aspects of dying experience (QODD).
factors (eg, type of ICU, communication and interaction with health care There are also instruments to measure comprehension of family mem-
workers). While patient- and relative-specific factors can typically not be bers in the ICU, which allow health care workers to provide additional
17
influenced, satisfaction with health care providers and with the overall information when needed, but they have not been formally validated.
ICU experience can be improved and may translate into better outcomes Table 17-1 shows advantages and limitations of these instruments
of relatives. The following institutional and provider risk factors for fam- adapted from Kentish-Barnes and colleagues. 2
ily dissatisfaction have been identified, among others: more than two
ICU physicians and/or different nurses on two consecutive days caring PRINCIPLES OF CARING FOR FAMILIES: STRATEGIES FOR
for the patient. In addition, dissatisfaction with the following items PREVENTING PSYCHOLOGICAL STRESS AND DAMAGE
7
predicted overall low satisfaction with ICU care: perceived competence
of nurses, concern and caring by intensive care unit staff, completeness How can we reduce the psychological impact of an ICU stay on families?
of information, the decision-making process, frequency of physician Researchers have investigated a number of avenues that we briefly detail
communication, and the atmosphere of the intensive care unit and the in this section. First, to actively participate in the process of decision
waiting room. There are also family- and patient-related risk factors making, relatives must comprehend what is going on. There is evidence
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