Pediatric Palliative Care: Title and subTitle BreakThe Time Has Come

WE ARE RIDING on the crest of miraculous advances in the diagnosis and treatment of numerous diseases and debilitating conditions. Pediatric health care providers are caught up in the wider culture of the expectation that with enough research, testing, and treatment, we should be able to effectively cure or control the health problems of the children for whom we care. Even for diagnoses known to be life limiting, the assumed goal of medical care remains curative in intent. This expectation, and our determination as health care professionals to provide the best care for our patients, has led unintentionally to our denial that death is in fact the ultimate outcome for many. Superspecialized tertiary and quaternary care often blinds us from noticing that, sometimes, the child for whom we care is dying. This sacred moment can be swept away in the undertow of high technology. Contro et al¹ help us regain our footing with their report directly from the parents of our patients. They elegantly describe the needs of dying children and their families, offering us the voices of the families themselves.

Their observations and conclusions touch on the full continuum of care, from diagnosis through death and bereavement; across care venues from hospital, to outpatient office, to home. Communication between staff and families was a key component. It played a critical role in health care decision making. Parents wanted to be actively involved in making decisions about their child's care. They valued honesty, accuracy, clarity, and compassion in their providers. They were distressed by insensitivity or feeling patronized or disregarded. Non–English-speaking families reported that language differences created impenetrable barriers to communication with providers. The researchers were struck by the profound and lasting distress caused by even a single event of painful interaction with staff. These findings confirm those of Wharton et al² and Wolfe et al,³ underscoring the need for training and accountability for all pediatric health care professionals in communicating compassionately and effectively with all families in all settings.^{4 - 7}

Contro and colleagues demonstrate the importance of asking about the needs of our patients and families.¹ Simple open-ended questions are good conversation starters, but they may not reveal the depth or detail of the care needed without prompting for elaboration. For instance, the methodological limitations of simply asking patients or families to rate their satisfaction with pain management are confirmed in this study. Parents responded that they were satisfied with the pain care, yet they reported that their children had unrelieved pain. A troubling explanation for this apparent discordance is that families may not expect that the pain can be controlled. If this is true, then they may not share this or other unmet needs with the health care team. Similarly, they may not articulate the values and beliefs that underlie their decisions without the opportunity to explore them safely and with respect.^{8 - 9}

Parents whose children died at home reported inadequate home and community-based care at the end of life. Problems ranged from inadequate staffing to agencies admitting they were unprepared to serve children, especially in managing pain. Parents felt they could no longer access services that were available to their children as inpatients because they were now outpatients. Clearly, we need an integrated model of care with pediatric expertise that is flexible and responsive to the child and family across all care venues. The American Academy of Pediatrics⁶ supports this approach, stating that pediatric palliative care should ensure a seamless transition between care settings, maintain provider continuity, and provide the support of an interdisciplinary team with pediatric palliative care expertise.

Concern exists about how to conduct research with dying patients and bereaved families in a rigorous yet respectful way. The bereaved parents in this study were quite willing to speak to the interviewers; in fact, they were grateful for being asked for their recommendations. We already know the importance of following up with bereaved families after the death of a loved one. The researchers' experiences show us that, far from harming bereaved families, being in touch with them after their child's death and listening to their stories with the intent of gaining new knowledge and improving care provides a measure of healing.

It is sobering to consider that the families who participated in this study are probably those who had the best experiences. The participants were predominantly well-educated parents from the same cultural group as the medical providers. Most of the children had a cancer illness that lasted less than 5 years. This is not a representative sample of all families who lose a child. It is likely to be a sample of families with greater resources for navigating a health care system that includes disease-specific support programs. Their tales of distressing care and unmet needs therefore take on added importance if we assume that those families whose stories were not told had even more difficult experiences.

We need more and better information about the range of experiences for children with chronic life-limiting diagnoses, for other family constellations such as grandparent-led families, and for other racial and ethnic groups. Important work must be done in the following areas:

According to the World Health Organization,¹⁰ palliative care affirms life through the active total care of patients whose disease is not responsive to curative treatment. It neither hastens nor postpones death. Its goal is to achieve the best quality of life for patients and their families during illness and bereavement. Contro and colleagues demonstrate that we are far from reaching this goal in pediatrics.¹ We must use our current knowledge and resources creatively to immediately assure a basic level of quality care while marshaling the research and planning efforts necessary to make this care the best possible. Our children deserve no less.