Patients’ goals

Patients, families, and healthcare providers have specific short- and long-term goals which evolve over time as a patient’s condition changes or becomes better understood. Incorporating a few evidence-based measures into routine ICU care ensures that gaps between patient, family and provider goals don’t arise, preventing significant distress for all involved.

Learn more about conflicts when it comes to end-of-life decision making.

What is it?

Families have described their ICU experience as “being on a rollercoaster” and “getting a crash course in a foreign culture” – it can be a stressful and disorienting time. It is crucial to help patients and families understand:

Who is at risk?

Critically ill patients are at particular risk of receiving treatments not in line with their goals and values. This is due to the severity of their illness and the complexities of their care.

ICU patients are often unable to communicate; so healthcare providers must rely on family members to speak on the patient’s behalf.

Families have only rarely had conversations ahead of time about conditions and goals for life-sustaining treatment.

Why does it matter?

Healthcare providers swear to uphold ethical principles including:

    • Autonomy (right of a person to govern themselves)
    • Beneficence (doing good)
    • Nonmaleficence (doing no harm)

Patients and families feel these same obligations to each other. When these ethical principles suggest conflicting courses of action, clinicians, patients and families may experience moral distress, contributing to depression, anxiety, and posttraumatic stress seen in all three groups.

For some ICU patients and families, the clinical and psychosocial landscape around goals of care is so difficult to navigate that an extra layer of support is needed. Palliative care consultation in the ICU has been associated with decreased length of stay and cost, lower rates of ICU readmission, and greater patient and family satisfaction with care.

Preventing care inconsistent with patient goals in 4 steps:

      1. Engage patients and families early on in advance care planning
      2. Identify a surrogate decision maker
      3. Provide opportunities for patients and families to participate in rounds and handoffs
      4. Make the most of family meetings

Check out the American College of Critical Care Medicine guidelines for supporting families in the ICU.

Going Deeper:

Engage patients and families early on in advance care planning

Advance care planning is for all people with serious illness and involves patients, families, and providers discussing what the future holds, how decisions are to be made, and what concerns needs to be addressed. It is an iterative and interactive process, contrasted with the more familiar Living Will document.

Patients, family members and medical teams collaborating through the advance care planning process are more likely to receive care congruent with goals and their family members feel less stress. AHRQ recommends as part of the Care and Communication Bundle that the ICU team will determine and document advance directive availability and code status by the end of ICU Day 1.

Identify a surrogate decision maker

All ICU patients need a surrogate decision maker, as less than 10% are able to make their own decisions. ICU team to identify a surrogate decision maker and document this by the end of ICU Day 1. If a patient is unable to name a surrogate decision maker at the time of ICU admission, providers should review prior records such as social work notes or discharge documents supplied by transferring hospitals. Primary care providers may have emergency contact or similar information. The surrogate decision making role is deceptively simple – just tell the The Care and Communication Bundle recommended by AHRQ calls on the doctors and nurses what your loved one would say in this situation. The reality is closer to that acknowledged in the American College of Critical Care Medicine (ACCM) consensus guidelines for family support:

…physicians may ask family members, who are in a heightened emotional state, to understand complex medical conditions, accept prognostic uncertainty, weigh various complex treatment options, and then take sole responsibility…

The literature is mixed on whether serving as a surrogate decision maker places an individual at increased risk for anxiety, depression, or posttraumatic stress. Social work and pastoral support should be provided to those carrying this responsibility.

Provide opportunities for patients and families to participate in rounds and handoffs

When patients and families are included in rounds and handoffs, they can provide information which the healthcare team would not otherwise know regarding prior history, life outside the hospital, cultural concerns, et cetera. Open exchange of questions and information among healthcare providers, families and patients facilitates successful transition out of ICU by ensuring questions are answered and necessary resources are in place. Participation in rounds and handoffs is a quality improvement strategy recommended by AHRQ and the American College of Critical Care Medicine.

Adult intensive care units considering implementing family presence on rounds must address staff concerns regarding privacy, learning opportunities, length of rounds, and comfort with the process. While formal research into this approach in the adult critical care setting is limited, it has been well-studied in pediatric ICUs. Parents who participate in rounds report lower stress, improved communication and greater overall satisfaction with care while providers note no increase in length of rounds or detriment in didactic experience.

Make the most of family meetings

Gaps between clinical reality, patient and family expectations, and provider expectations frequently complicate decision making. Only when all of these people come together can the full picture emerge. American College of Critical Care Medicine consensus guidelines recommend that “family meetings with the multiprofessional team begin within 24-48 hours after ICU admission and are repeated as dictated by the condition of the patient with input from all pertinent members of the multiprofessional team.”

Nurses should be included in the planning and implementation of family meetings. A patient’s bedside nurse spends 12 consecutive hours with that patient and family and in doing so has an understanding of family dynamics, concerns, and current knowledge that is often unmatched on the healthcare team. At the conclusion of the meeting, families often seek their nurse’s assistance translating medical jargon and answering forgotten questions.

Structured communication techniques offer frameworks in which these emotionally-charged, information-heavy conversations can occur. Core skills of communication training are often mnemonic-based. Examples:

  • 4 C’s: Convening the meeting, Checking understanding, showing Caring, and Continuing the dialogue
  • NURSE empathic statements: Naming, Understanding, Respecting, Supporting, and Exploring
  • VALUE: Value what family members say, Acknowledge emotions, Listen, Understand the patient as a person, and Elicit further questions.

Common to all approaches is an emphasis on patients and families speaking and providers listening. Family satisfaction with provider communication increases with the amount of time family members speak relative to clinicians. Benefits of holding family conferences before conflict and confusion arise include reduced ICU length-of-stay, increased family and staff satisfaction with care, and an increased number of days where family and staff agree on goals of care.

Read more about the importance and benefits of advance care planning.

Learn more about family presence on rounds and engaging patients & families in the ICU.

Learn more about communicating effectively with relatives of patients dying in the ICU.

Next: Physical Impairment

Mobility is Medicine: Staying strong in the ICU

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