Family Engagement and Empowerment

As healthcare professionals, we share the common belief that we are called to serve not only the patient but also the patient’s loved ones and family members. Thus, no care plan is complete without incorporation of the family’s wishes, concerns, questions, and participation. That is why the ABCDE bundle has evolved to include the letter “F” for Family Engagement. We know that from a humanistic perspective this is an appropriate goal of medical care. Empowering family members to be equal participants in patient care, however, can also lead to a number of other important outcomes including enhancing ICU team performance and communication. Let’s face it, there are always days that a family member brings up some element of care for their loved one that we could have easily missed had they not felt comfortable to be candid with us. Lastly, whatever toolbox or bundle you choose to use at your institution, whether it be the ABCDEF evidence-based way of implementing the SCCM PADIS guidelines or another mechanism, allowing the family to be active participants and to speak up when they think we could have done better will keep us appropriately humbled in service of their loved one.

Take a few minutes to explore the Patient and Family portal of this website. We have many families and ICU survivors visiting this site and they find it value added, so please take time to learn from them. We know we have, and if nothing else, watch a few of the short 4 minute videos and read some of the heart-wrenching testimonials from their time during and after ICU care. We welcome your feedback and help in making this website better for all who visit these pages.

Strategies to Communicate with Families

Provider communication with the patient’s support system is important during critical illness. In the early stages of hospitalization, the focus of communication should pertain to establishing rapport, setting expectations, and providing education to caregivers. Rapport building occurs when the family feels heard and understood, and when they come to believe that they have a voice in their loved one’s care. Expectations by the family should be explicitly addressed by the ICU team. Frequently, family members have expectations pertaining to the recovery of their loved ones which may be unrealistic or even naïve. Casting a vision for families of the journey ahead can assist them in adjusting their thoughts and will enable them to make more realistic plans involving more realistic timelines. Education about potential hurdles or barriers including psychological difficulties such as post traumatic stress disorder (PTSD), anxiety, or depression can enable families to face the future and brace for future challenges. Attending to the various needs of caregivers - both physical and psychological - is also crucial and caregivers quite naturally neglect their own immediate needs (often at their own peril and at the peril of their families) and experience burnout. Connecting families to supportive resources, like the Sepsis Alliance, can provide caregivers with resources and information that they can utilize even after the ICU.

While written communication is important, there are a few simple communication strategies that can enrich interactions with cognitively impaired individuals. These 3 basic strategies have proven to be effective and include:

1. Use simplified speech – Patients experiencing either delirium or other forms of cognitive impairment best understand both simple (non-complex) sentences and basic (non-medical) vocabulary.
2. Be concrete – Effective verbal communication with cognitively impaired patients should involve the use of concrete, readily understood, language and an avoidance of abstract vocabulary, complicated metaphors, and colloquialisms.
3. Take your time – Rapid communication often prevents patients from comprehending what is being communicated, although communicating with patients in a way that fosters comprehension should be a primary goal. That is, clinical staff and providers should not simply aim to “read” a list of discharge instructions to a patient but rather to try to ensure that they genuinely understand what is being said to them.

Who is the Patient? Incorporating Families into Care

Effective medical care hinges on an understanding of who the “patient” is and in the context of critical illness, it is not simply the individual struggling with sepsis or ARDS that is impacted but the family as well. Critical illness usually impacts not only an individual but their entire support system, which may be their nuclear family or some combination of family and friends or other caregivers who are actively engaged in supportive roles. In light of this, it is crucial not only to recognize the needs of the identified patient but the needs of their “family” as well. The character of these needs may differ widely but as it relates to the family, these needs may involve education, social and emotional support, and access to helpful resources. Further, these needs often pertain to the family’s need to know what to expect during and after critical illness. The family members of ICU survivors that we have been fortunate to know over the last decade have reiterated consistent themes about their interaction with healthcare providers during episodes of critical illness. Specifically, they have reported that they had a desire to understand more fully what their husband or wife, etc would potentially experience if they survived. While this cannot be perfectly predicted, data can provide estimates of the cognitive, psychological, physical, and functional difficulties that emerge. Instead of avoiding this information, families are usually empowered by it and, indeed, sharing such data with families often leads to stronger, healthier relationships between them and their providers.

Mental Health difficulties in Families of Survivors of Critical Illness

In The ICU Recovery Center at Vanderbilt, we have often had the experience of sitting with ICU survivors and their families and observing that family members sometimes seem to be in even greater emotional distress than our patients. This dynamic points to the fact that the critical illness of a loved one is profoundly (and sometimes permanently) traumatizing for all involved. Recently, efforts have been made to explore the mental health effects of critical illness of family members and early results are startling and alarming. Studies show that up to 70% of first-degree relatives of ICU survivors suffer from symptoms of anxiety, while 35% suffer from depression. Many suffer from symptoms of acute stress disorder and PTSD as well, with spouses being particularly vulnerable to these difficulties. Though data on long-term outcomes in families is limited, it appears that up to 40% of family members suffer from at least one psychiatric illness at one year. Taken together, these findings highlight the significant clinical needs of family members – needs that, to our knowledge, are largely unrecognized and unaddressed.

Help for Families

Other areas of medicine are relatively further along in caring for the needs of families of medically ill patients than the critical care community currently is. Thoughtful models of engagement exist in the cancer and pediatric communities to name a few and the incorporation of best practices from their fields is increasingly beginning to guide the treatment of distressed families of ICU survivors. Key aspects of addressing the mental health needs of family members involve the following:

1. Thoughtful and early recognition of family member distress – Experiencing intense and sometimes “roller coaster” like emotions in the ICU is normal but often, symptoms of entrenched psychiatric distress in family members are evident even during their visits to the ICU. In cases, where family members are beginning to display clear clinical difficulties (which could be expressed by a marked lack of sleep, increased emotional reactivity, unusual levels of anger, the inability to stop crying, etc.) involving local experts such as clergy, social workers, or hospital psychologists or counselors may be not only important but may represent a vital service.
2. Use of support groups – Support groups are used with medical conditions and literature is consistent in supporting their efficacy. ICUs would do well to incorporate support groups for family members both during and after critical illness, as these may be a very effective and minimally expensive way of improving the lives of family members – family members who often must be healthy themselves to effectively provide care for ICU survivors.
3. Helping to prevent caregiver burnout – Paradoxically, caregivers are often best equipped for the demanding job of caring for medically ill family members if they first attend to their own health related and emotional needs, though this is counterintuitive for many of them. The failure to take care of routine needs – eating regularly, getting adequate sleep, leaving the ICU briefly to exercise, etc. – can lead to caregiver burnout, which can and should be avoided whenever possible. A key responsibility for “front line” providers is to encourage the family members of patients to attend to their own basic but often crucially important needs and to do so without guilt.