Reframing Hope in Pediatric End-of-Life Care

But study after study on prognostication has shown that patients and their families prefer more honest and accurate communication. In a survey of parents of children with cancer, more than one-third of parents stated that they wanted more information than they received from their physician. Seventy-seven percent reported feeling more hopeful when physicians disclosed news in an empathetic and understanding way. Inanother survey on parent preferences and physician communication, the majority of parents of children with cancer still wanted as much information as possible, preferred for outcomes to be expressed numerically, and felt that knowing the prognosis was important, even when that prognosis was extremely or very upsetting.

Hope in these situations, however, is not necessarily hope for a cure. Instead, it could be optimism that something good may come from the experience, comfort in the ability to prepare for the road ahead or even solace from knowing there will be a peaceful end to the child’s suffering.

Pediatric health professionals can reframe hope for patients and families by understanding that the feeling can be a helpful coping mechanism when approaching the death of a child, says Lisa Humphrey, MD, medical director of the Advanced Illness Management team at Nationwide Children’s Hospital, which providespalliative care and hospice to children. It does not necessarily represent denial, she notes. For physicians who are not comfortable relaying a poor prognosis or promoting hope at the end of life, Dr. Humphrey encourages referrals to palliative care experts.

In a recent Pediatric Grand Rounds presentation at Nationwide Children’s, Dr. Humphrey explained that palliative care staff can act as “treatment brokers,” or a third party that can help when a patient doesn’t respond to therapy. “We can partner with families to define new hopes and achieve new goals using our clinical expertise and through sharing our experiences with other patients and families,” says Dr. Humphrey.

Meeting the Needs of All Family Members

 The hope that a parent or child has — even in the face of bad news — may help families endure the difficult prognosis with a more positive outlook, she says. Studies have shown that parental responses strongly affect a dying child’s reaction to illness and impending death. Hope is fundamental to prolonging survival and is an important underlying element of a child’s will to live, research suggests, and open communication promotes this hope in both the child and family at the end of life.

During the terminal phase of a child’s illness, the dying child and parents are typically the primary focus of the health care team. Healthy siblings are usually left with extended family or friends, because it is thought that they should be protected from the reality of death. Previous research, however, has demonstrated that even young children understand death, and that these protective measures may hinder siblings’ bereavement process. If siblings are more closely involved in the care of the dying child, some studies suggest they may be better able to accept the death of their brother or sister.

Many families of patients in hospice or preparing for the end of life often feel that physicians and staff are no longer interested in them once a cure is out of reach. For all pediatric health professionals and staff, Dr. Humphrey says that continuing to spend time with patients and their families is often the most valuable thing that a physician can do.

“Social norms suggest that we should give grieving families privacy so health care providers stay away during the dying process,” explains Dr. Humphrey. “Yet patients and parents perceive our actions as disinterest, for we no longer find the patient to have value. Being in the room, giving the gift of time, shows patients and families that the child’s life still has value and that you honor that value with your presence.” Treating patients as worthwhile of your time and care is an affirmation of worth and a hope-fostering strategy, she adds.

Another strategy is to emphasize the concept of interpersonal connectedness and legacy, or the sense that the patient has accomplished something important that will be left behind as a legacy. Redefining goals to make them more attainable and relevant can bring a newfound sense of purpose to patients and families. These include specific, short-term aims that can take days or weeks to achieve or a shift in focus to doing something concrete or charitable for others that may contribute to a patient’s legacy. Discussing uplifting past memories and highlighting positive personal attributes, such as the determination and courage of the child or family members, can also promote hope.

“Through compassionate, open conversations about prognostication, hopes and goals, we can better ensure that patient health care plans are in alignment with their goals,” Dr. Humphrey says. “Through this, we can maximize a patient’s quality of life, even if that includes the dying process.”

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