Paediatric Palliative Care: Myths And Facts

Dr. Ramkumar P
Senior Consultant, Palliative Medicine
Aster Medcity, Kochi

Paediatric Palliative Care prevents, identifies and treats suffering in children with serious illnesses, their families, and the team that care for them. It is appropriate at any stage of the illness, and can be provided together with disease-directed treatment.

It is, importantly, an approach to care that can be, and should be, provided by any health care professional. This concept is very important as suffering occurs throughout the disease spectrum.

In short, palliative care is about preventing, or treating suffering and improving quality of life in all phases of life and is not only about death.

WHO Definition of Palliative Care for Children (Adapted)

• Active total care of the child’s body, mind and spirit, and also involves giving support to the family

• Begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease

• Demands that health providers evaluate and alleviate a child’s physical, psychological, and social distress

• Requires broad interdisciplinary approach

• Includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited

• Can be provided in tertiary care facilities, in community health and hospice centres, and in children’s homes

• Should be developmentally appropriate and in accordance with family values

The Association for Children with Life-threatening Conditions and their families (ACT 2008) in the United Kingdome defined PPC as follows:

Palliative care for children and young people with life-limiting conditions is an active and total approach to care, from the point of diagnosis (or recognition) throughout the child’s life, embracing physical, emotional, social and

spiritual elements through to death and beyond.

It focuses on enhancement of quality of life for the child/young person and support for the family and includes the management of distressing symptoms, provision of short breaks and care through death and bereavement.

Or finally, in the words of an affected child:

"Palliative care no longer means helping children die well, it means helping children and their families to live well and then, when the time is certain, to help them die gently.”
[Mattie Stepanek 1990-2007]

What are the tasks involved?

Rather than defining paediatric palliative care in terms of a patient base, severity of disease, prognostic timeline, or even a general philosophy of care, palliative care can best be understood as a specific set of tasks directed at mitigating suffering. By understanding these tasks; learning to identify predictable times and settings of suffering; and learning to collaborate with multidisciplinary specialists, utilize communication skills, and identify clinical resources, an clinicians can more effectively support children with life-threatening illnesses and their families.

Paediatric palliative care includes any intervention that focuses on reducing the morbidity of illness, slowing the progression of disease, and improving quality of life at any stage of disease

Tasks involved:

• Sufferings requiring communication:

• Identifying problems and challenges

• Understanding illness

• Exploring hopes/setting goal

• Advanced care planning

• Making decisions

Suffering Requiring care coordination :

• Collaborating with providers/specialists

• Facilitating logistics of medical and social needs

• Partnering with community programs

• Identifying community resources

Sufferings Requiring Interventions :

• Physical sufferings

• Psychological sufferings

• Social sufferings

• Spiritual sufferings

• Bereavement

• Family support

• Team support

• Community support.

Myths about Paediatric Palliative Care :

Assumption 1: The first myth is that a child must be terminally ill to receive palliative care services. As we have outlined earlier, palliative care is appropriate for any serious illness, from diagnosis forward, and its provision should be independent of prognosis. In fact, some children in palliative care programs actually survive their underlying conditions and go on to graduate from programs once their needs have been met. The important thing to focus on is that the journey faced by a child with a life-threatening condition and that child’s family is difficult and often full of suffering. Paediatric palliative care is available to help with that journey, regardless of the outcome.

Assumption 2: Palliative care and hospice are not equivalent. Although a primary difference in the United States may be related to funding (since hospice is provided as a benefit through Medicare and Medicaid), the philosophies are different. Hospice, again, is generally focused on patients who do have terminal prognoses, though many hospice programs also offer services far upstream from end of life. Nevertheless, the entire spectrum of palliative care starts from diagnosis of a life-threatening condition and is not time-limited.

Assumption 3: A third common misconception is that children receiving hospice care must have a do-not-resuscitate/do-not-attempt-resuscitation (also known as “allow natural death” or “limiting intervention” orders) order to be eligible for services. Although discussion of these topics is an important competency in palliative care, many children do not have any type of limitation of intervention placed on their care or in their medical record. There are no “entrance criteria” for palliative care which specify that such orders must first exist. The potential fear, that limitation of Interventions or DNR order reduces the level care can be alleviated: In fact, placing a DNR/AND order did not result in reduction of the level, quality and priority of children’s medical care.

Assumption 4: Children with cancer certainly represent an important demographic in palliative care programs. In fact, some programs exist solely within oncology centers, practices or hospitals. And paediatric hematologists/oncologists are often involved in or even at the helm of paediatric palliative care programs, owing both to interest and expertise in the care of children with serious illness. Yet in most paediatric palliative care programs, patients with hematology/oncology diagnoses are usually a substantially smaller contingent than children with neurologic/neurodegenerative or genetic/chromosomal conditions.

Assumption 5: Another common myth is that children in palliative care programs must not receive any cure-directed or life-prolonging therapy. In the adult hospice world, patients are asked to sign enrolment forms which specify that they will not seek ongoing curative treatment. In paediatric palliative care, however, care is provided alongside cure-directed therapy. Further, disease-modifying therapy is often synergistic with the care provided by palliative care teams – children whose pain is well-controlled and who are breathing and sleeping better because of good symptom control are unquestionably better able to tolerate disease-directed treatment, such as chemotherapy or radiation.

Assumption 6: Families and providers alike often fear that when patients receive palliative care, this means that the palliative care team will take over the patient. On the contrary, palliative care teams provide consultation in conjunction with a child’s primary care team and make recommendations to manage symptoms and reduce suffering. Expert paediatric palliative care providers should practice impeccable consultation etiquette, respecting the expertise and leadership of treatment team who have established long-term relationships with patients and families. Palliative care team should be encouraging and facilitating treatment team to maintain the primary role in a patient’s care, and should facilitate consummate communication with that team.

Assumption 7: Similarly, palliative care team usually go where patients are located, so palliative care consultation does NOT mean that patients move to a special unit. This model does occur more commonly in the adult palliative care world, and paediatric patients occasionally do go to inpatient hospice facilities to receive end-of-life care. However, most of the time, with paediatric palliative care involvement does not change the patient’s primary treatment location.

Assumption 8: Not infrequently, families believe that children who receive palliative care will die sooner and will lose hope; they also believe that a palliative care referral means that the child’s treatment team has given up hope. Similarly, providers believe that mentioning palliative care will signal to families that all hope is lost. Palliative care and hope are not mutually exclusive. Parents and children are often maintaining dual realities, in which they are aware that an illness is serious and that a child might die, while at the same time are hopeful for a cure, a miracle, good symptom control, time at home, time together as a family, and a myriad of other things. Palliative care is about hope as well. And emerging evidence clearly shows that patients who receive palliative care not only live better but also live longer.

As already mentioned above, a recent study in the New England Journal of Medicine demonstrated that patients with terminal lung cancer who received palliative care together with usual treatment had improved symptoms (especially depression) AND lived an average of 1.5 months longer than patients who did not receive palliative care. Although this study is in adults, there is no reason to believe that similar findings would not be demonstrated in children. And the cohort study we discussed earlier revealed that more than 2/3 of the children enrolled were still alive at 1 year of follow-up.

Assumption 9: Another common myth is that palliative care is only appropriate in certain settings, mostly home. Palliative care is appropriate and can be delivered wherever the child is located – whether at home, in a long-term care or hospice facility, in a hospital unit, a clinic, or in an intensive care unit. Finally, for children receiving palliative care who do die, death can occur in whatever location is preferred by the child and family. US data indicates that approximately 70% of families would prefer that their child died at home, if adequate support (especially home care) could be provided; studies also show that sibling and parent bereavement is usually better when home death occurs. But for some families, death in other locations is preferable. Often children and families feel as though the hospital is their second home, and they imagine that they or the child’s siblings will have difficulty continuing to live in the home where their child died. Families’ need enough time and experience with home based care providers to enable them to build trust. Again, there are no proscriptions or criteria specified by palliative care programs related to where children receive their care or where they die. Palliative care is appropriate for any child with a serious, life-threatening condition, regardless of prognosis and location.

Assumption 10: Finally, an enduring misconception is the belief that in the management of pain and dyspnea, opioids will hasten death and should only be administered as a last resort. This was contradicted in the adult literature and experienced PPC team commonly observe that administering opioids and/or benzodiazepines, together with comfort care to relieve dyspnea and pain, not only prolongs life but also improves the child’s quality of life.

Resource of Information : Adapted from EPEC Paediatric Module.