Here’s how to meet needs of families

Are you effectively meeting the needs of families with a terminally ill child in your care? If not, you’re not in compliance with new guidelines from the Elk Grove Village, IL-based American Academy of Pediatrics (AAP) on palliative care for children, warns Marcia Levetown, MD, FAAP, a member of the AAP’s Committee on Bioethics.

Here are ways to ensure you’re meeting the needs of family members:

Consider end-of-life issues for chronically ill children.

Even if a parent who previously negotiated advance care plans for their child calls 911, it might not mean they want lifesaving measures to be done, argues Levetown. "They may want help managing symptoms, anxiety, and fear."

A family member’s exhortation to "do everything" may not mean what you think, Levetown suggests. "Everything’ doesn’t always mean putting in a central line and doing CPR," she adds. It might mean doing everything to make the child comfortable, she says. "That means making sure the child and family are together as much as possible, that the patient’s breathing is made easier, and that the patient doesn’t end up in the ICU with a tube in their throat if that is not desired."

Preserving life and making the patient comfortable are both important goals, says Levetown. "The goal may be to control the symptoms, rather than engage in invasive therapies that may not be of value or interest to the patient and family."

In the ED, survival may be perceived as the only good outcome, says Levetown. "But children do die, sometimes because they were never really meant to live. A child may have a malformation or metabolic defect and won’t be able to survive no matter how hard we try."

Sometimes death is prolonged for reasons that are not clear, Levetown argues. "We might need to reconsider what it is that we are doing and what goals we are achieving. Even in the ED, we need to consider the extent of suffering."

There is a difference between a child with neurological devastation with pneumonia and a child with community acquired pneumonia who is normally healthy, Levetown notes. "We do need to get the big picture and discuss with family members. You can bag the child, give an antipyretic, and stabilize. But you may want to ask the family, What is it we are hoping to accomplish here?’"

Ask the family how you can make them as comfortable as possible.

Ask family members if they would like to stay in the hospital or be on a particular floor with familiar nursing personnel, suggests Levetown.

Allow family members to be present.

A severely ill child is part of a family, Levetown stresses. "By only treating the child, we are missing out on the ongoing support of the child and family. Enabling a family member to be present during procedures is an important part of lessening the discomfort the child experiences."

New guidelines from the Dallas-based American Heart Association (AHA) recommend that family members should be allowed to be present during efforts to resuscitate, reports Levetown. "This ensures that people have peace, knowing that all reasonable efforts were used to assist their child, and that the ED personnel cared." (For more information on the AHA guidelines and family presence, see ED Nursing, November 2000.)

It also gives them a chance to be of help to their child in what could be the final moments of his or her life, Levetown advises. "Ask the family member to stand at the head of bed and talk to the child, to touch the child’s cheeks, to hold his or her hand, instead of simply throwing them into a chaotic setting with no defined role."

At Santa Barbara (CA) Cottage Health System’s ED, a family witnessed resuscitation policy and procedure was implemented after a consensus was reached at a staff meeting. "We all realized nobody would be able to keep any of us out, so how could we do that to another parent or loved one?" says Denise Huff, RN, BSN, CEN, ED director and trauma services. "ED nurses only have to put themselves in the role of a parent of a dying child, and they will change their behaviors." (See sample Family-Witnessed Resuscitation policy.)

Courtesy of Santa Barbara (CA) Cottage Health System.

The staff makes every effort to connect patients and families in this situation as soon as possible, but ultimately it is up to the resuscitation team to give the OK, says Huff. "We have never been denied by the team and have been part of some very beautiful end-of-life events."

ED staff have received some training from the pastoral care department on how to be the support person for this role, Huff says. "The importance of the support person cannot be emphasized enough. This person must be aware of the patient’s condition, and be able to prepare the family for what they will see and hear."

That individual person also must prepare the family member to interact freely with their loved one, says Huff. "The support person also has to be freed of other responsibilities for a portion of time to stay with the family," she stresses. "The staff has to be supportive of this role and may have to pick up the slack for a time while this is going on."

• Ask for feedback.

After the event, contact family members to ask if you helped them adequately, suggests Huff. "We send a survey to family-witnessed resuscitation families two months later, and we ask them if we met their needs." (See letter and Emergency Department Questionnaire.) "Past patients are our best teachers."


Courtesy of Santa Barbara (CA) Cottage Health System.