Implications for Australian practice of North American guidelines for the support of the family in patient-centred intensive care

Article Outline

• Summary
• Background
• Evaluation of the guidelines
  • Validity
    • Were all important options and outcomes considered?
    • Was an explicit and sensible process used to identify, select and combine evidence?
    • Was an explicit and sensible process used to consider the relative value of different outcomes?
    • Is the guideline likely to account for important recent developments?
    • Has the guideline been subject to peer review and testing?
  • The recommendations
    • Are practical, clinically important recommendations made?
    • How strong are the recommendations?
  • Will the recommendations help in caring for Australian patients and families?
    • Is the primary objective of the guideline consistent with our objective?
    • Are the recommendations applicable to our patients?
• Conclusion
• Acknowledgements
• References
• Copyright

Summary 

Patient-centred care, in which health care professionals inform patients and families, maintain active involvement in decision making, coordinate care across disciplines, provide families with physical comfort and emotional support and ensure care is culturally sensitive, is recommended over clinician- or disease-centred care for better patient outcomes. Patients in intensive care are often too ill to participate in communication and decision making, so the patient's family should be involved in communication and decision making about the patient's care. The Society of Critical Care Medicine published clinical practice guidelines for the support of the family in the patient-centred intensive care unit. The purpose of this paper is to assess whether the 42 recommendations in the guidelines are valid and applicable in Australia. We used a recognised framework for evaluation of clinical practice guidelines. It was found that the guidelines were developed systematically using accepted methods of guideline development as much as possible. An extensive literature review was conducted and publications containing all levels of evidence were considered for inclusion. There were some weaknesses in the guideline development, especially lack of consultation with patients and families and a lack of high-level evidence, however the authors have provided comprehensive recommendations to guide all aspects of patient-centred care. We conclude that the recommendations are largely applicable to the patients and families receiving treatment and support within intensive care units in Australia. Where strong evidence is lacking, the recommendations should be a stimulus to conduct studies that test interventions that may benefit intensive care patients, their families, and intensive care staff.

Keywords: Intensive care, Patient-centred care, Family support

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Background 

Patient-centred care is recommended over clinician- or disease-centred care for better patient outcomes, including patient satisfaction (Davidson et al., 2007). Patient-centred care enables patients to exercise the amount of control they choose over the care and treatment they receive, after being given the necessary information and opportunity to do so (Institute of Medicine, 2001). Information about patients’ health problems and treatment options is shared with them by their health care providers using effective communication (Institute of Medicine, 2001). Patient-centred care involves health care professionals informing patients and families, maintaining active involvement in decision making, coordinating care across disciplines, providing families with physical comfort and emotional support and ensuring care is culturally sensitive in accordance with the patient's wishes.

Patients needing intensive care often are too ill to participate in communication about their health problems and treatment options, or to engage in decision making about the care and treatment they receive. In these circumstances the health care personnel who are caring for the patient should involve the patient's family or others of their choosing in communication and decision making about the patient's care and treatment. However, families often feel poorly informed and excluded from decision making and the care of their family members when they are in the intensive care unit (ICU). The Society of Critical Care Medicine (in the United States of America) therefore published clinical practice guidelines for the support of the family in the patient-centred intensive care unit. The purpose of this paper is to assess whether the recommendations the guidelines contain are valid and whether they are likely to help us in caring for patients and families in Australian ICUs.

The guidelines were developed at the request of the American College of Critical Care Medicine (ACCM) by a Task Force chaired by a registered nurse (RN) and made up of 10 medical practitioners, a pharmacist and one other RN. “Family” was defined as “… individuals who provide support and with whom the patient has a significant relationship” as determined by the patient, or by surrogates for minors or those without decision making capacity (Davidson et al., 2007, p. 606). The Task Force conducted an extensive literature review using the Cochrane library, CINAHL and Medline databases for relevant articles on adult, peadiatric and neonatal care published between 1980 and 2005. Authors working on subsections of the guidelines used the Cochrane methodology (Higgins & Green, 2006) to evaluate the evidence and to grade the recommendations in each article. Levels of evidence thus ranged from well conducted randomised controlled trials (RCTs), or systematic reviews containing these (level 1) to low quality RCTs or cohort studies, or systematic reviews containing these (level 2), to case series (level 4) and expert opinion (level 5), with corresponding grades of recommendations of A to D. It is not specified what criteria were used to retain articles in the guideline development process or how this was decided. There are 339 references in the guidelines and most of the evidence they are based on is level 4 or 5. The 42 recommendations made in the guidelines address the areas of decision making, family coping, staff stress related to family interactions, cultural support of the family, spiritual/religious support, family visiting, family environment of care, family presence on rounds, family presence at resuscitation and palliative care (Table 1).

Table 1. Recommendations for support of the family in patient-centred intensive care (adapted from Davidson et al., 2007)

		Grade
Decision making
1	Decision making in the ICU is based on a partnership between the patient, his or her appointed surrogate, and the multiprofessional team	B
2	Practitioners fully disclose the patient's current status and prognosis to designated surrogates and clearly explain all reasonable management options. (see recommendations 3 and 4 in the Cultural Support of the Family section)	B
3	ICU caregivers strive to understand the level of life-sustaining therapies desired by patients, either directly from those patients or via their surrogates	D
4	Family meetings with the multiprofessional team begin within 24–48h after ICU admission and are repeated as dictated by the condition of the patient with input from all pertinent members of the multiprofessional team. (see also ‘staff stress related to family interactions’ column)	B
5	ICU caregivers receive training in communication, conflict management, and meeting facilitation skills	C
Family coping
1	ICU staff receive training in how to assess family needs and family members’ stress and anxiety levels	C
2	Nursing and physician staff assigned to each patient are as consistent as possible. Family members receive regular updates in language they can understand, but the number of health professionals who provide information is kept to a minimum	C
3	Families are encouraged to provide as much care as the patient's condition will allow and they are comfortable providing	D
4	Family members are provided with ample information in a variety of formats on emotional needs in the ICU and methods appropriate to comfort and assist in care	C
5	Family support is provided by the multiprofessional team, including social workers, clergy, nursing, medicine, and parent support groups	C
Staff stress related to family interactions
1	The multiprofessional team is kept informed of treatment goals so that the messages given to the family are consistent, thereby reducing friction between team members and between the team and family	C
2	A mechanism is created whereby all staff members may request a debriefing to voice concerns with the treatment plan, decompress, vent feelings, or grieve	C
Cultural support of the family
1	On request or when conflict arises due to cultural differences in values, when there is a choice of providers, the provider's culture is matched to the patient's	C
2	Healthcare professionals receive education to provide culturally competent care	C
3	The patient's desire to be told the truth about his or her clinical situation is determined by a routine assessment	D
	(a three-fold method to determine the patient's desire for disclosure and how much clinical information to disclose:
	- Indirect discussion: “Some patients in your situation would rather have the doctor discuss details of their care with their family. What do you prefer?”
	- Discussing a hypothetical case: “Some people who have your condition have found it helpful to consider several options for their care including …”
	- Watching for nonverbal cues such as facial expressions and body position to assess the impact of the discussion on the patient)
4	For patients who are actively engaged in decision making about their care, their desire for truth takes precedence over that of their family when there is a conflict	D
5	When requesting assent for procedures, cultural norms are considered and respected whenever possible	D
6	If a patient makes an “informed refusal” of information, the request is respected. Subsequent information about the patient's illness and its prognosis is delivered in a culturally relevant and appropriate manner as indicated by the patient. The outcome of such discussions is documented in the patient's medical record	D
Spiritual and religious support
1	Spiritual needs of the patient are assessed by the healthcare team, and findings that affect health and healing incorporated into the plan of care	C
2	Physicians will review reports of ancillary team members such as chaplains, social workers, and nurses to integrate their perspectives into patient care. Chaplains and social workers are trained to explore spiritual issues and can provide intensivists with valuable insights into the patient's condition	D
3	Nurses and doctors receive training in awareness of spiritual and religious issues so that they may properly assess patients and make use of findings in the plan of care written by social workers and chaplains	C
4	If a patient requests that a healthcare provider pray with him or her, and the healthcare worker agrees to and feels comfortable with it, the request is honoured and considered to be part of the spectrum of holistic intensive care	D
Family visiting
1	Open visiting in the adult intensive care environment allows flexibility for patients and families and is determined on a case-by-case basis	B
2	The patient, family, and nurse determine the visitation schedule collectively; the schedule takes into account the best interest of the patient	C
3	Visiting in the PICU and NICU is open to parents and guardians 24h a day	C
4	After participation in a previsit education process, visiting by siblings in the PICU and NICU is allowed with parental approval	C
5	Caution is taken with sibling visits to immunocompromised infants; with physician approval, sibling visits should be considered	D
6	Pets that are clean and properly immunised are not restricted from visiting the ICU. Guidelines are created to provide animal-assisted therapy and animal-assisted activities for patients	B
Family environment of care
1	Improve patient confidentiality, privacy, and social support by building ICUs with single-bed rooms that include space for family	B
2	Develop signs and way-finding systems to reduce stress on patients, families, and visitors	B
3	Replicate patient research regarding the effect of furniture arrangement, natural lighting, access to nature, positive distractions (music, laughter, art), and reduced noise levels on the biopsychosocial health of family members visiting in the ICU	D
Family presence on rounds
1	Parents or guardians of children in the ICU are given the opportunity to participate in rounds (randomised controlled trial was done on general medical patients and not ICU patients)	B
2	Whenever possible, adult patients or surrogate decision makers are given the opportunity to participate in rounds	B
3	Paediatric patients in the ICU are given the opportunity to participate in rounds with parental permission	D
4	Patients and family members who participate in rounds are given the opportunity to ask questions to clarify information discussed on rounds	D
Family presence at resuscitation (FPR)
1	Institutions develop a structured process to allow the presence of family members during cardiopulmonary resuscitation of their loved one that includes a staff debriefing	C
2	The resuscitation team includes a member designated and trained to support the family during family witnessed resuscitation	D
3	Resuscitation team and ICU training includes information regarding the process and rationale for FPR	D
Palliative care
1	Assessments are made of the family's understanding of the illness and its consequences, symptoms, side effects, functional impairment, and treatments and of the family's ability to cope with the illness and its consequences. Family education should be based on the assessment findings	D
2	The family is educated about the signs and symptoms of approaching death in a developmentally and culturally appropriate manner	D
3	As appropriate, the family is informed about and offered referral to hospice palliative care and other community-based healthcare resources	D
4	Bereavement services and follow-up care are made available to the family after the death of a patient	D
5	Training in the elements of palliative care is a formal component of critical care education	C

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Evaluation of the guidelines 

The clinical practice guidelines for the support of the family in the patient-centred intensive care unit (Davidson et al., 2007) were evaluated using the framework for evaluation of clinical practice guidelines of the Users’ Guides to the Medical Literature (Hayward, Wilson, Tunis, Bass, & Guyatt, 1995; Wilson, Hayward, Tunis, Bass, & Guyatt, 1995). We assessed the guidelines using questions to determine whether the results of the ACCM Task Force work were valid and whether the guidelines would help us in caring for Australian intensive care patients.

Validity 

In making their recommendations the Task Force considered the literature, particularly research literature that exists on each of the areas of practice to identify salient interventions and possible alternatives. For example in relation to decision making, paternalistic and autonomous approaches were contrasted, evidence was put forward that autonomous decision making by the family on behalf of the critically ill patient is burdensome and a model of shared decision making by the patient/family and the multiprofessional¹ team is described, with supporting research on how this can be effective. Efforts were made to consider outcomes of importance to patients (e.g. ascertaining what their wishes would be if they could speak for themselves), to families (e.g. their need for frank and consistent information from the clinical team) and to staff (e.g. averting stress by involving all team members in routine care planning conferences). Where there is little research on a topic, such as family presence on rounds, studies from other clinical settings and published opinions were considered and judgment made on possible benefits and drawbacks for intensive care. Some of the options and outcomes given prominence in the guidelines, such as religious practices, may be operationalised differently in the Australian context, where people tend to be more private about religion and spirituality.

The authors of the guidelines have described the databases they searched to identify evidence on supporting the family in intensive care. As indicated in the background, even though the levels of evidence and grades of recommendations were assessed using Cochrane categories, the processes that were used to combine the evidence have not been made explicit. There is no reporting of focussed clinical questions for each topic, nor the criteria that were used for the inclusion of articles in the review or how the assessment of the evidence or grading of the recommendations was checked for reproducibility before being used as the basis for guidelines. However, it appears from the references that have been included that the Task Force's literature searches yielded an extensive, if not exhaustive range of literature on the relevant topics. For example they have used many articles reporting nursing research that were published in nursing centric journals, including British and Australian journals that often are overlooked by authors from the USA. Opinions and letters on topics relevant to the guidelines have also been considered as part of the evidence.

The ideal standards of evidence for guideline development include definition of admissible evidence, defined processes for selection and combination of evidence, and reporting of strong evidence linking interventions and outcomes (Hayward et al., 1995). The nature of the topics addressed in these guidelines means that if the ideal standards were upheld, very little of the evidence that was available would have been considered worthwhile. When guideline developers are dealing with inadequate evidence it is recommended that a variety of studies and expert opinion be considered (Hayward et al., 1995), as has been candidly done by the ACCM Task Force. Given the difficulty of conducting large, highly controlled randomised clinical trials on the interventions and outcomes of interest in the intensive care population, the volume and quality of evidence presented in support of the guidelines is impressive, if not ideal. The Task Force has assembled a comprehensive range of recommendations based on available evidence, many of which are intuitively compelling. Where strong evidence is lacking, the recommendations provide a set of research questions that can be the stimulus to conduct studies that test interventions that may benefit intensive care patients, their families, and intensive care staff.

The value assigned to different outcomes is subject to opinion, and the method by which the outcomes proposed in guidelines are agreed on should be reported (Hayward et al., 1995). The ACCM relied on the opinions of the critical care professionals who comprised its Task Force. These specialist professionals considered literature on the preferences of patients, families and staff. For example, they noted that the stress of families was alleviated by being able to visit the patient anytime, that lack of counselling skills is stressful for nurses and that the desired communication about factors such as prognosis and care options may vary substantially between patients of different cultures. The guidelines recommend that the assessments and perspectives of team members such as social workers, chaplains and nurses be integrated into patient care. Notwithstanding these efforts, inclusion of former intensive care patients, patients’ family members and a broader range of critical care health team members would have provided more confidence that the values of patients, families and all staff were represented in the outcomes that the guidelines are seeking to achieve. The outcomes which are proposed in the guidelines, which seem to us as professionals to be important to patients and families, may not be those which actually are important to patients and families. The views of intensive care patients and their families on what is important to them should be canvassed prior to implementation of the recommendations of the ACCM Task Force or future studies designed to test the interventions proposed in the guidelines.

The Task Force specifically narrowed their literature search for several guidelines (family visiting, family environment of care, family presence on rounds and family witnessed resuscitation) to commence in the late 1990s because of new philosophies on these issues evident at that time. The initial search for all guidelines was extended to include articles published in 2004 and 2005. Therefore, given the lead-time from submission of journal manuscripts to acceptance and publication, these guidelines published in early 2007 are likely to account for important recent developments on the areas of patient care they address.

The guidelines were published in Critical Care Medicine, which is the Society of Critical Care Medicine's peer reviewed journal, so are assumed to have been submitted to external peer review prior to acceptance for publication. As yet there has been little communication or correspondence about the guidelines and few citations reported; however they appeared only in February 2007, so it is early to assess acceptance by those means. As the evidence underlying the guidelines is relatively weak there is a strong argument for testing their effects on patient and family outcomes, though not as an integrated set of guidelines but rather as a series of studies on the separate topics they address.

The recommendations 

“To be useful, recommendations should give practical, unambiguous advice about a specific health problem” (Wilson et al., 1995, p. 1630). The Task Force has sought to present practical and unambiguous recommendations (Table 1). Generally the recommendations lack ambiguity and could be operationalised given the right practical conditions. Achieving the right conditions for the recommended changes in practice (where changes are needed) would involve a willingness of staff to change their practices for about half of the recommendations, sometimes with possible resource implications as well. A further quarter of the recommendations have clear resource implications, and six of the recommendations explicitly specify the need for training or education for critical care staff. Thus, the practicality of implementing some of the guidelines is a challenge in the Australian health care context and probably in many others. However many of the changes suggested are not incongruent with current practice within Australian intensive care units which predominately operate as closed units where patient care is approached holistically by the multiprofessional team (Bellomo, Stow, & Hart, 2007; Judson & Fisher, 2006; McKinley, 2007). Achieving changes in staff behaviour is notoriously difficult however, if the change in practice is not congruent with the current culture. It requires skilled facilitation to demonstrate the advantage of the change to clinicians and to encourage their adoption of the change (Rogers, 1995). An accepted multifaceted approach to the implementation of guidelines includes the adaptation of the suggested changes to the local context along with presentation of audit data (feedback loops) (Davis & Taylor-Vaisey, 1997; Grilli & Lomas, 1994; Ockene & Zapka, 2000).

Some of the recommendations with resource implications would require only inexpensive materials such as brochures and signs. Many others would require extra staff, for example to culturally match caregiving staff and patients, or to provide specialised personnel such as counsellors, social workers and pet visiting services where these are not routinely available in the hospital. The recommendations requiring education also present challenges. Undergraduate education programs in Australia for nurses, doctors and other health professionals include communication skills, assessment of the patient and family, and provision of culturally competent care. Present formal postgraduate specialist education for critical care nurses and doctors is less likely to include explicit training in supporting the family during presence at resuscitation, conflict management, meeting facilitation or palliative care. The skills recommended in the guidelines may be able to be developed in locally based in-service education programs focused on the implementation and sustainability of clinical guidelines. The use of patient (wherever possible) and family satisfaction data in this context is known to be particularly influential in sustaining change (Grilli & Lomas, 1994). Feedback of satisfaction data should be afforded high priority in quality processes within ICUs, not only to monitor progress and provide opportunities for improvement but to offer unique learning opportunities for all levels and disciplines of intensive care professionals (Dodek, Heyland, Rocker, & Cook, 2004). Integration of relevant measures of the implementation of patient-centred care into processes within the ICU would provide educational opportunities on each topic and support the sustainability of this approach to care.

By their nature, the guidelines for support of the family are not about a specific health problem. The benefits of implementing the recommendations are unlikely to be measurable changes in mortality and physical morbidity, but other clinically important outcomes in the form of how the patient/family perceives the quality of care, better functioning of the family and the health care team, reduction of distress for patients, families and staff and greater satisfaction for all. These outcomes can be measured and attempts should be made to do so when the recommended interventions are implemented.

The recommendations mostly are not based on strong evidence, as noted above, but the outcomes that they are aimed at are clinically important and should motivate change in practice. The proposed interventions should be tested in well-designed studies in real-world situations.

Will the recommendations help in caring for Australian patients and families? 

The ACCM's guidelines for family support in the patient-centred ICU are explicitly intended to define evidence-based best practice in the nominated areas of practice by the multiprofessional team. As such the purpose of the guidelines meets the use we wish them to have of improving care of patients, support of families and functional teamwork in the delivery of intensive care in Australia.

Australian intensive care patients and their families are applicable targets of the guidelines as are the US patients and families for whom they were written. Australian patients and families are equally at risk for the adverse experiences and outcomes the guidelines are intended to avert. Australians intensive care practitioners would argue that many of the standards the guidelines are aimed at already exist to a large extent here, such as shared decision making, family support, family visiting, spiritual support and palliative care in the intensive care unit (Bellomo et al., 2007; Higlett, Bishop, Hart, & Hicks, 2005; Judson & Fisher, 2006). However it is far from evident that the desired standards expressed in the guidelines are universally achieved at a consistent level in Australia. For example, in most ICUs there is a policy of unrestricted visiting hours; in practice bedside nurses exercise considerable discretion over visiting and family and friends spend many hours in the waiting room. Also, importantly, two limitations of the guidelines noted above – lack of input on patient and family preferences and the limited strength of the evidence for the recommended practices – make it essential that we assess their applicability to our context by obtaining patient and family input and testing the interventions in the guidelines in the Australian context.

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Conclusion 

The guidelines examined in this paper were developed systematically using the accepted methods of guideline development as much as possible. An extensive literature review was conducted using available health care databases. Studies containing all levels of evidence were considered for inclusion, along with other sources such as expert opinion and letters. We used a well-established framework to evaluate the guidelines with the specific aim of establishing their relevance to the Australian intensive care context. Although there were some weaknesses in the guideline development process, especially lack of consultation with patients and families and a lack of high-level evidence, the authors have provided comprehensive recommendations to guide all aspects of patient-centred care. We conclude that the recommendations are largely applicable to the patients and families receiving treatment and support within intensive care units in Australia. However, the implementation of the guidelines would require a process in which the views of patients and families were sought and outcomes relevant to the recommendations, in particular the patients’ and families’ experience are evaluated.

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Acknowledgements 

The authors are grateful for the contribution to the evaluation of the guidelines made by Diane Roche, RN, RM, MA, Chaplain, Intensive Care Unit, Royal North Shore Hospital, and the registered nurses and students of nursing who contributed to the Journal Club in which the guidelines were first evaluated.

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• 1 Multiprofessional is used consistently throughout the guidelines and also in this article to avoid ambiguity with the use of multidisciplinary to refer to multiple medical specialities.