Palliative care for children with cancer- there is always something we can do!
One of the most difficult decisions facing parents and physicians in the management of a child with cancer is finding the balance between “cure at all costs” and palliative care – moving the focus of treatment towards symptom control, thereby minimising suffering and maximising quality of life. One of the crucial aims of paediatric palliative care is to prolong life of reasonable quality, but to avoid futile treatments which may potentially be harmful.
Palliative care is “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems: physical, psychosocial and spiritual.” According to the World Health Organisation (WHO), palliative care for children is “the active total care of the child’s body, mind and spirit, and also involves giving support to the family. Palliative care begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease”. It is widely believed that a patient has to be “off chemotherapy” to receive palliative care. However the WHO clearly states that the two modalities (active chemotherapy treatment and palliative care) can and should happen simultaneously. It is possible and advisable to initiate palliative care while the patient is on disease-directed treatment, and disease-directed treatment in the form of chemotherapy may play an important role in the palliative care strategy.
Efficient palliative care is one of the cornerstones of cancer treatment. There are different reasons why cancer in children may be advanced and even incurable at presentation to an oncology unit. Childhood cancer is very rare and early subtle signs may be difficult to recognise on first presentation to a health service. There may be no option for cure, or attempts at cure may not be successful and the disease may relapse or progress. In these situations, palliative chemotherapy may be offered in an attempt to improve quality of life and prolong survival, while avoiding treatments that may potentially be harmful.
What is palliative chemotherapy?
Palliative chemotherapy, in broad terms, refers to the use of cytotoxic chemotherapy (oral or intravenous) for treatment of a patient without a realistic chance of cure. The focus at this stage is symptom control (reduction of common symptoms such as bleeding, dyspnoea and pain) and prolongation of life, as well as improvement of quality of life. In a sense it can be seen as a midway between all or nothing – continuing some cancer-directed therapy with the knowledge that it is unlikely to be curative, while focusing on symptom control, quality of life and minimising side-effects.
Where does “metronomic chemotherapy” fit in?
The word “metronomic” is derived from the word “metronome” which refers to a musical device that produces regular clicks. Metronomic chemotherapy is defined as “the chronic administration of chemotherapeutic agents at relatively low, minimally toxic doses, and with no prolonged drug-free breaks”. This produces a sustained low blood level of the chemotherapy drug without any major side-effects. The target of metronomic chemotherapy is inhibition of tumour growth through anti-angiogenic mechanisms, compared to conventional chemotherapy that treats cancer directly by killing rapidly dividing tumour cells. The use of metronomic chemotherapy is mostly described in the context of multiple relapsed or refractory cancer (cancer not responding to conventional chemotherapy). It certainly is a very effective form of palliative chemotherapy but it could and likely will be used in the future with curative intent.
When is palliative chemotherapy indicated?
Patients who present with advanced incurable cancer or patients who are refractory to conventional therapy will arrive at a point where they do no longer have a reasonable chance of cure. At this stage the treating team and the parents will have to consider different options of treatment, such as palliative care with symptom relief only, further aggressive treatments (with good symptom control included), or the “in between” option of palliative chemotherapy.
In these very important decisions it is suggested that health care professionals explicitly address the issues of hope, quality of life and survival during discussions with the family and patient. Honest communication about what palliative chemotherapy can and cannot offer to the patient should facilitate informed decision-making in the interest of the child. It is very important that the parents understand the prognosis, as inaccurate perceptions can sometimes lead parents to make decisions to continue aggressive therapy with unrealistic expectations and false hope. When families choose to go ahead with palliative chemotherapy in an attempt to prolong life, they should have an understanding of the expected trajectory of the illness.
What are the benefits of palliative chemotherapy?
Palliative chemotherapy aims at stopping or slowing down the progression of the malignancy in order to improve or maintain the quality of life of children with incurable cancer. Palliative chemotherapy often improves symptom control by controlling the underlying disease process. It has fewer side-effects than aggressive chemotherapy and can often be administered on an outpatient basis, avoiding the need for prolonged hospital stay. One very important potential benefit of using palliative chemotherapy will be buying time for the patient and family to do the work of dying – having important conversations, coming to terms with the fact that the condition is incurable, achieving personal goals, working on a legacy, and doing anticipatory grief work.
What are potential problems with palliative chemotherapy?
Families should be informed about the potential problems of palliative chemotherapy. Patients receiving palliative chemotherapy are at risk of spending precious time in hospital away from their families, receiving treatment with no or minimal benefit, being exposed to unnecessary painful procedures, experiencing unwanted side-effects as a result of the chemotherapy, entertaining false hope of extended life (unrealistic expectations), and therefore not preparing for death and missing out on appropriate palliative care. Patients may also die prematurely from sepsis or bleeding as a result of chemotherapy related complications. The financial burden to the family when including travelling costs, time away from work for caregivers and loss of income as a result of giving palliative chemotherapy also needs to be taken into account. It is important to make the purpose of the palliative chemotherapy clear to parents, and also to help them understand that it is reasonable to choose not to continue any cancer-directed therapy (and focus purely on symptom-directed care).
There is always something we can do
The 15th of February 2018 is International Childhood Cancer Day. The focus of this day is to build awareness, improve access to care and ultimately increase chances of survival. However, childhood cancer will in some cases remain a fatal disease despite early diagnosis and optimal treatment. In these cases where palliative care only remains the best option, we should focus on improving quality of life and impeccable symptom assessment and management, as well as caring for the family emotionally and spiritually. The essence of palliative care is caring for the souls of the people affected by the disease, no matter what the outcome may be. There is always something we can do to make the journey less painful and more bearable for everyone affected by childhood cancer.
*Dr Ané Büchner completed her undergraduate studies at the University of Pretoria in 2005 and thereafter specialised in paediatrics (also at UP). She then did a fellowship in paediatric oncology, and has been working as consultant and specialist paediatric oncologist since 2015 at the paediatric oncology units in Steve Biko Academic Hospital as well as Unitas Hospital in Pretoria. She has a special interest in paediatric palliative care, completed her Diploma in Palliative Medicine (UCT) in 2015 and is currently working on her master’s degree in Palliative Medicine with a focus on the use of palliative chemotherapy in children with incurable cancer.
Qualifications: MBChB(UP), DCH(SA), FCPaed(SA), MMed Paed(UP), Cert Med Oncol(SA), Dip Pall Med(UCT)