11/8/2017
Kathleen Puntillo, RN, PhD, FAAN, FCCM
Engaging and Supporting
Families of ICU Patients
Presentation Aims
• Describe ICU family needs, symptoms and long-term distress
• Present overview of guidelines for family- centered care in ICUs
• Offer exemplars from research on ICU family distress and engagement
Core Concepts of Family-Centered Care
• Dignity and Respect
• Information Sharing
• Participation
• Collaboration
Institute of Family-Centered Care www.familycenteredcare.org
Families Suffer
Over 60% of 74 family
members reported being tired, anxious, sad, or
scared, and had no
appetite and decreased well-being
Symptoms
McAdam J, et al. Crit Care Med. 2010;38(4):1078-1085.
Family Symptoms
56,8 59,5
43,2
0 10 20 30 40 50 60 70
Traumatic Stress Anxiety Depression
% of Family Members with Symptoms
Traumatic Stress, Anxiety, and Depression (n = 74)
McAdam J, et al. Crit Care Med. 2010;38(4):1078-1085.
Bereaved Families
“At 8:00 PM, I went out there and felt like I was going into a war zone. I was put out like, out on the street.
No one told me anything. They knew several days
beforehand that I had arranged the date [for ventilator withdrawal], but nobody approached me … Nothing was addressed at all… Nobody asked, ‘Are you able to take care of yourself; are you able to find a place to go to, as far as for grief, for death of your mother?’ Where do you go, what do you do? … Prepare one for it a little bit. Not to walk out into the cold night.”
Nelson J, et al. Crit Care Med. 2010;38(3):808-818.
“How people die remains in the memory of those who live on”
Dame Cicely Saunders
. From: Netzer G, Sullivan DR. Ann Am Thorac Soc. 2014 March;11(3):435-441.
The Family Intensive Care Unit Syndrome: Potential Mechanisms.
Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004–
2005
Judy E. Davidson, RN, FCCM; Karen Powers, MD; Kamyar M. Hedayat, MD; Mark Tieszen, MD, FCCM; Alexander A. Kon, MD, FCCM; Eric
Shepard, MD, FCCM; Vicki Spuhler, RN, MS, CCRN; I. David Todres, MD, FCCM; Mitchell Levy, MD, FCCM; Juliana Barr, MD, FCCM; Raj Ghandi, MD, FCCM; Gregory Hirsch, MD; Deborah Armstrong, PharmD, FCCM
Critical Care Medicine, 2007;35:
605- 622
Started with 1994
• Rapidly developing field of research
• Relatively “immature”
science
1979 1994 2007
Critical Care Medicine, 2017;45:103-128
Definitions
• Family is defined by the patient or, in the case of
minors or those without decision-making capacity, by their surrogates. In this context, the family may be
related or unrelated to the patient. They are
individuals who provide support and with whom the patient has a significant relationship.
• Family-centered care is an approach to health care that is respectful of and responsive to individual families’ needs and values.
Grading of Recommendations, Assessment, Development and Evaluation (GRADE)
Statements and Recommendations
Quality of evidence: statements and recommendations
• High
• Moderate
• Low
• Very Low
Strength of recommendations: recommendations only
• Either strong, weak, or none
• Either in favor of an intervention (+) or against an intervention (-)
Results
• 24 Recommendations 5 Categories
• Weak = We suggest (all 24)
• Strong = We recommend (none)
• No recommendation= Future research
Recommendations
(from 238 research studies)
1.
Family presence 2. Family support 3. Communication 4. Teams5. Operational/environmental issues
FAMILY PRESENCE
•
At the bedside – “open or flexible visiting hours”
• On rounds
• During resuscitation (w/trained staff member)
Family Participation on Rounds
• Who?
– Decision Makers
– Patients whenever possible
• Invite them
• Provide opportunity to ask questions/clarify
• Fosters:
– Bi-directional communication – Shared decision-making
• “Any additional concerns you have?”
Davidson, JE. 2007. Crit Care Med 35(2), 605-22.
Cypress, BS 2012. Dimens Crit Care Nurse. 31:53-64
FAMILY SUPPORT
• Provide families w/informational leaflets
• Provide family education programs
• Use validated decision-support tools
• Implement peer-to-peer support
• Implement ICU diaries
• Family members be offered option to assist w/care
ICU Diaries
• 50+ articles on PubMed on ICU diaries since 2001
• Qualitative and quantitative research
• One outcome: ICU Diaries decreased the incidence of PTSD following ICU stay
• Resource: http://www.icu-diary.org
Jones, C et al. Critical Care 2010: 14; R168
Assisting With Care:
What do Families Contribute?
• Active Presence
• Facilitator
• Coach
• Patient Protector
• Historian
• Voluntary Caregiver
McAdam, Arai & Puntillo, 2008, ICM
Voluntary Caregiver
Actual care they give the patient
• “Well, there for a while my sister and I were here
together…We take turns, try to do, uh, work, like one gets the washrag, one gets the sponge…we moisten her lips because they get really dry. We noticed that they were blistering…Uh, we are just attentive to little things like that.”
* Daughter of a patient with abdominal aortic aneurysm with complications
Thirst Intervention
Can be performed by families
Puntillo, K., et al. (2014). A randomized
clinical trial of an intervention to relieve thirst and dry mouth in intensive care unit patients.
Intensive Care Medicine, 40, 1295-1302.
COMMUNICATION
•
Routine family conferences• Structured approaches e.g., use of
“VALUE” mnemonic (Curtis, J Crit Care, 2002; 17:147)
• Communication training for providers
Communication
Integrating Multidisciplinary Palliative Care into the ICU
11/8/2017
Wendy Anderson Principal Investigator
Steven Pantilat and Kathleen Puntillo, Co-Investigators
UCSF Team: J Cimino, S Barbour, K Turner, D Joseph, A Leemhuis, T Napoli, M Milic
The IMPACT-ICU Project
Communication Training
IMPACT-ICU
Aims
• Conduct interactive training workshop to teach ICU bedside nurses communication skills
• Reinforce ICU nurses’ communications skills at the bedside
Results
• Minimum 6 workshops at each center
• 428 nurses trained
• Skill and confidence levels significantly higher after training in responding to family distress, ensuring
families understand information, providing emotional support
11/8/2017
Anderson WG, et al. Palliative Care professional development for critical care nurses: A multicenter program. AJCC, 2017.
Future Research
• All 24 recommendations followed by suggestions for research
• Electronic Appendix D
– 33 specific recommendations for areas in need of future research
Critical Care Medicine, 2017;45:103-128
Identifying FCC “gaps” in your ICU
• Your ICU may already be adhering to some of the new FCC recommendations
• Many of the others you are not already doing will require work to implement
• Prioritizing those recommendations that are important and feasible is a key strategy
Family Engagement and Support:
And Miles to Go…
When family is a dog
Family Giving Care:
Thirst intervention
Family Diaries
Families mobilizing patients
ICU nurse communication skills
Kathleen Puntillo, RN, PhD, FAAN, FCCM [email protected]
