Vol. 16 •Issue 8 • Page 26
Show of Support
New clinical practice guidelines call for more family involvement in patient-centered ICUs.
Distraught family members fidget in the stiff waiting room chairs as they anxiously anticipate your patient report. It’s not good news, and they’re going to have to make some difficult decisions while a ventilator breathes for their father in the intensive care unit down the hall.
Because many patients in the ICU can’t communicate with health care providers about their care, it’s crucial to establish a relationship with their loved ones to ensure the patients’ needs and desires are met. But many ICU staffs aren’t sure how to reach out to families.
New clinical practice guidelines released by the American College of Critical Care Medicine and the Society of Critical Care Medicine are a good place to start. These are the first published guidelines to define evidence-based standards to incorporate families into making decisions about patient care.
They reflect an important shift in 21st century health care, which is moving farther away from the disease- and physician-based delivery of care toward an approach that emphasizes the patient’s psychological and social needs.
With these ideals in mind, the SCCM Patient and Family Support Committee created the Family-Centered Care Award in 2004 to recognize ICU staffs who used initiatives to help families cope with the ICU experience. After reviewing more than 300 ideas about how to improve family care in the ICU, the committee researched the literature for evidence behind family support practices. That review became the basis of the guidelines.
They assembled a multidisciplinary task force who reviewed the published literature from 1980 to 2003 and devised 43 recommendations within 10 subsections.1 The guidelines address issues such as decision-making, family coping, staff stress related to family interactions, cultural support, spiritual/religious support, open and flexible family visitation, family presence during rounds, family presence at resuscitation, family environment of care, and palliative care.
Judy E. Davidson, RN, MS, CCRN, FCCM, task force chairwoman and lead author of the guidelines, spearheaded the project because she felt these concerns are especially relevant in the ICU, where families have a strong influence on decision-making and patient outcomes.
“Eventually we need to make the leap (to recognize) that family are not visitors — they are part of the patient-family dyad that should not be separated,” said Davidson, a clinical nurse specialist at Scripps Mercy Hospital in San Diego. “If the recommendations in this guideline are adopted, we will move family-centered care practices forward.”
Breaking down barriers
One of the main points the guidelines cover is families’ desire to be present in the ICU. In the past few years, more hospitals have instituted 24-hour or open visiting hours to respect this patient-family bond. The guidelines don’t specify a timeline for visiting hours, but they recommend considering hours on a case-by-case basis and allowing families flexibility. The literature repeatedly has validated the need to be present, and there’s no evidence of harm due to open visitation.
“At some point, we need to give up control over these family members as if we own them,” she said.
However, she stresses each facility must consider any potential obstacles or reservations before implementing such a policy. In some cases, allowing visitors 24-hour access may jeopardize the safety of your staff and patients. Or perhaps your facility simply doesn’t have a comfortable place for families to stay.
When Mary Lance-Smith, MSN, RN, CCRN, became nurse manager in the ICU at Lankenau Hospital, Wynnewood, Pa., comfy lounge chairs and adequate seating weren’t major considerations since the visiting hours were limited. But when she decided to expand the hours and allow late-night visitors under special circumstances, a family safe haven became a pressing need.
The leather reclining chairs and spacious sofas that now adorn Lankenau’s ICU waiting room guarantee families a place of their own in the unit. Plenty of blankets and pillows convert sofas into makeshift beds. Cable television and wireless Internet provide some distraction and a link to the outside world.
Lance-Smith hopes eventually to create a more soothing and natural environment in the patient rooms as well, with windows to provide natural light and plenty of space to accommodate families, staff, and equipment. The task force recommends incorporating such design elements to improve privacy and social support and reduce stress.
The process of dying
While the medical community generally has accepted the benefits of more open visiting hours, there’s still controversy about family presence at resuscitation (FPR). Many health care professionals feel the family’s presence only would complicate the process, reduce efficiency, and cause emotional trauma.
In fact, some studies reveal just the opposite: FPR actually decreases adverse psychological effects for the family because it fulfills their need to know everything that could be done was done.
“These traumatic events — death and codes — are going to have lifelong impacts on the families,” said Charles Durbin Jr., MD, FCCM, FAARC, past president of the SCCM. “And if they’re not allowed to participate physically, there will be a loss that’s really hard to make up in the future. It’s not just the death, it’s actually the process of dying that we recognize is so important to resolution of internal issues.”
Not so long ago, before defibrillators and respirators became routine, people died at home with their families around them. Dying in the hospital is a relatively new phenomenon — one that still terrifies many people who don’t want to die alone in a strange place.
“People are going to die,” said Dr. Durbin, medical director of respiratory care and professor of anesthesiology and surgery at the University of Virginia, Charlottesville. “And it’s better to die with your loved ones around you, for their sake and yours, than it is to be isolated in an ICU someplace.”
However, FPR can be traumatizing for families if institutions don’t develop a structured process that includes a staff debriefing as the ACCM recommends.
Its guidelines suggest that training for the resuscitation team and ICU staff include information about the process and rationale for the family’s presence at resuscitation.
“You need to get your staff comfortable with it, so that means you have to go through it a couple times,” Dr. Durbin said. “You need to find out where your own deficiencies in dealing with stressful issues are, and you probably need to audit what’s going on and change your processes to make them better.”
For example, each team should designate and train a member to support families during witnessed resuscitation. Although the process can be cathartic for families, certainly it’s extremely emotional, stressful, and confusing for them as well. They need someone to explain what’s going on and hold their hand during and sometimes after the resuscitation attempts.
“It’s not for everyone, and it’s not that we want everyone to be there,” Davidson said. “But if somebody (wants to), they should be given the opportunity to stay.” This chance is priceless for the wife that promised her husband she would never leave his side or the daughter who wants to be with her mother in her last moments.
A proactive approach
Given the changes in literature just in the last three years, Davidson said she would retitle the coping section “Adverse Psychological Outcomes,” given the growing number of studies documenting anxiety, depression, and post-traumatic stress response in family members of ICU patients. Researchers are just beginning to explore measures to reduce the incidence of these events. This research shows speaking to families appears to be more helpful than giving them something in writing alone.
Along these lines, Lankenau Hospital implemented a new policy to improve updates and communication with families. Patients and families elect a point person who receives twice-daily phone calls from an ICU nurse on duty to talk about their loved one’s condition. As a result, families feel less stressed, and they make fewer calls to the ICU because they know they’ll be updated. The ICU nurses feel more satisfaction and less tension because they have more time to deliver patient care.
Lankenau’s cardiothoracic ICU has seen similar benefits with a slightly different method. They record daily messages with patient updates that families can access with by calling the phone line and entering a personal access code. Families like this method because they don’t have to repeat the information multiple times to other family members; they can just give them the access code and everyone is in the know.
“The updates are especially important because some of the family members can’t get into the hospital,” said Sara Simkins, RN, a clinical nurse on Lankenau’s ICU staff. “They get to feel involved, and this allows them to develop a relationship with us. The evening updates are especially beneficial because people feel better knowing (about their loved one) before bed.”
Neither policy cost the hospital anything to implement, but both made a huge difference in patient care and family satisfaction.
While these guidelines offer great potential for improvements in patient care, certainly they will be met with opposition from some professionals in the medical community who aren’t comfortable with families making health care decisions just yet. But with time, an open mind, and some new blood, the next decade could see some of these practices becoming standards of care.
“It’s not a revolution, it’s an evolution,”Dr. Durbin said. “As the older folks retire, the younger ideas will prevail and the changes will be incremental over a long period of time É and the holdouts will become fewer and fewer.”
1.American College of Critical Care Medicine Task Force 2004-2005. Crit Care Med. 2007;35:605-22.
Colleen Mullarkey is editorial assistant of ADVANCE. She can be reached at [email protected].
How Family-friendly is Your Department?
Judy E. Davidson, RN, MS, CCRN, FCCM, suggests organizations perform a baseline assessment of their departments to help transfer the knowledge from guideline to practice at a faster rate.
Take each recommendation from the guidelines, make it a survey question, and attach it to a Likert scale. For example:
Health care professionals receive education to provide culturally competent care:
(a) Almost always (b) Usually (c) Sometimes (d) Almost never
Once all users of the unit have completed the survey, you can convert the Likert scale into a numeric score — “almost always” = 100, “usually” = 66, “sometimes” = 33, and “almost never” = 0. Then you can determine an average overall score, and break it down further by looking at how you scored on each of the 10 subsections. So your department may have 100 percent on family visitation, but only 33 percent in cultural support of the family.
Then, as Davidson did with a team at Scripps Mercy Hospital, San Diego, you can take the results and speak with your staff about setting goals. Choose something to serve as a target goal to help you move forward. If you choose one recommendation from each of the 10 subsections, you can try to make progress in those areas over a set period of time.
The guidelines are available at www.learnicu.org.