Palliative care improves the quality of life of patients and their families who are facing chronic, complex, advanced, or life-threatening illness.1 In the United States, more than 53,000 children die each year (in 2008, 25,000 aged 0 to 11 months and 28,000 aged 1 to 19 years); 500,000 live with life-limiting disease, and 1.5 million live with complex medical illness.2,3 The need for pediatric palliative care is impressive, and psychiatrists have a vital role to play in this new specialty.4,5
The palliative medicine specialist may become involved in the care of a patient at any phase—from diagnosis to death to care of the bereaved family members. Palliative care is not provided in lieu of “traditional” or “curative” care, rather it occurs concurrently with disease-modifying therapies from the initial diagnosis. As illness progresses, curative therapies may become secondary to palliative care (Figure).6
The palliative medicine specialist must therefore be able to attend to a range of issues in the care of patients and their families. These issues include disease management, physical status and symptoms, psychological status and symptoms, social needs, family needs, spiritual needs, practical needs, end-of-life care and death management, and loss and grief.5,6 Psychiatrists have an integral role to play in each of these domains.
Here I explore 3 specific areas in which psychiatrists can help relieve suffering in children who have a chronic and/or terminal illness.
Symptoms of depression are common among patients with complex chronic and advanced disease, and making a diagnosis of a depressive episode in this population can be challenging for many reasons.7-9 One frequent cause for delay in diagnosis, and therefore in treatment, is that patients and families may feel that being depressed is normal and not an indication to seek help. Clinicians may share this sentiment. As stated by a patient with cystic fibrosis suffering from graft rejection following lung transplant: “Of course I am depressed! I am dying!” This is a common statement made by depressed patients with serious medical illnesses. Another cause for difficulty in diagnosis is that many of the somatic symptoms of depression (eg, change in appetite, decreased energy, change in sleep, diminished ability to concentrate or make decisions) are comingled with the physical symptoms of disease.7
Once the diagnosis of depression is made, selecting appropriate treatment can be equally challenging. The typical first-line pharmacological treatments simply take too long to benefit patients with limited life expectancy. Also, the medication regimen for many medically ill children and adolescents is extensive, making the risk of drug-drug interactions and adverse events more likely.
Table 1 presents information on available pharmacological agents for the rapid treatment of pediatric depression. Because of their tolerability and rapid onset of action, stimulants and low-dose ketamine are becoming first-line among many palliative care psychiatrists for the treatment of depression.7,10-13
Dignity therapy is a novel, short-term psychotherapeutic intervention that has been shown to have a rapid and dramatic impact on a patient’s symptoms of depression.14
• Chronic and advanced illnesses are associated with a significantly increased risk of psychiatric symptoms and disorders. Pediatric patients and their families benefit from the involvement of a psychiatrist on the interdisciplinary team in the palliative care setting.
• Depression, anxiety, and delirium are very common among palliative care patients. Accurate diagnosis and appropriate treatment can be challenging. This article provides a summary of how to approach these symptoms in the pediatric palliative care patient.
• Pediatric palliative care is a new and rapidly expanding medical specialty, and psychiatrists have a critical role to play.
Sophia, a 14-year-old with end-stage cystic fibrosis, reported symptoms of depressed mood all of the time: “I’m dying!”; anhedonia: “I used to enjoy watching my little sister play with her friends, now I don’t”; profound irritability, hopelessness, pervasive worrying, an inabil-ity to make decisions: “I can’t even tell my mom what I want for dinner”; and marked negative ruminations. A diagnosis of major depressive disorder was made. Prognosis at the time of the consultation was weeks to months.
A trial of methylphenidate, 5 mg every morning, was initiated. The dose was titrated over 2 days to 10 mg every morning and noon. Sophia responded with complete remission of all symptoms of depression within 4 days. There were no notable adverse effects. She was able to enjoy her younger sister’s birthday party a week before she passed away. Her mother related, “Thank you for giving me the Sophia she had always been. I will now remember her as the person she always was.”
As with depression, making a diagnosis of an anxiety disorder can also be a challenge in the context of advanced medical illness. The common symptoms of a panic attack characterized by tachypnea, tachycardia, shortness of breath, GI symptoms and nausea, and diaphoresis may also have origins in the comorbid medical disease.15-17 Differentiating etiology, however, is important to ensure appropriate treatment. For example, to keep in mind that the patient with a history of purely psychiatrically based panic attacks who is hypercoaguable as a result of the medical disease may one day have a pulmonary embolus. This diagnosis must not be delayed because of misattribution of symptoms to the preexisting panic disorder.
The pharmacological treatment of anxiety in the seriously medically ill patient is also complicated by time needed to achieve therapeutic effect, drug-drug interactions, and the potential for the adverse cognitive effects of some commonly used anxiolytics.16,17 Benzodiazepines and anticholinergic agents can lead to delirium in medically ill patients. Trazodone and gabapentin prescribed on an as-needed basis may be beneficial.18 When benzodiazepines are required for severe anxiety and panic symptoms, careful monitoring for the development of delirium is critical. SSRIs, serotonin-norepinephrine reuptake inhibitors, and tricyclic antidepressants also may not be the ideal choice for the treatment of anxiety in this population because of the delay in realizing therapeutic benefit.5
1. WHO Definition of Palliative Care; 2011. http://www.who.int/cancer/palliative/definition/en. Accessed September 6, 2011.
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