In whatever country they manifest, life-limiting conditions are heartbreaking for children and their families. In Russia, a lack of resources and even more damaging disregard of children’s rights makes coping with the situation unneccesarily distressing, says Anna Sonkin
Up until now, little has been said about palliative care in Russia, and even less about palliative care for children. In a country of population 140 million, there are still no more than a few palliative care initiatives and hardly any palliative care specialists. We estimate that in Moscow alone, about 3500 children do not receive the palliative care they need (basing our calculation on needs assessment formulas from the UK and Belarus, adapted to Russia’s incomplete and biased statistical data).
The Russian Ministry of Health is in the process of developing national regulations and requiring each region to establish a children’s hospice or a dedicated hospital palliative care unit. This state-led approach contrasts quite sharply with the experience of other countries such as the UK, where 20 years of concurrent development of palliative care and children’s hospice movements preceded active governmental input. In the UK, government input when it came was based around research, summary and an attempt at coordination, and has probably even now not come to the point of strict national regulation and policy.
Describing the unusual development of a social commitment to care for the dying in such an extraordinary country as Russia is a difficult task. There are complex and intertwined barriers and numerous cultural nuances that we cannot hope to convey in totality. In our view, however, the problems associated with palliative care for children in Russia are so fundamental to its basic approach to human rights that they have to be given a chance of being summarised and presented to the world.
The formula for a good life and a good death
According to the British association Together for Short Lives palliative care for children and young people with life-limiting conditions implies an active and total approach to care, from the point of diagnosis or recognition, throughout the child’s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the child/young person and support for the family. It includes the management of distressing symptoms, provision of short breaks and care through death and bereavement.
‘Palliative care has in its core the concept of value – the value of every child’s life, no matter how short, and also the value of every child’s death as a fundamentally important experience for the whole family’
Palliative care has in its core the concept of value – the value of every child’s life, no matter how short, and also the value of every child’s death as a fundamentally important experience for the whole family that, however unfair and tragic, can be more or less destructive depending on the support that is given and the conditions and circumstances that are arranged.
There is a certain challenge to describing a ‘formula’ for the ideal standards and principles of children’s palliative care to a wide non-specialist audience. Nonetheless, we have chosen here to map the story of a ‘typical’ child and his/her family’s journey – through diagnosis of incurable or life-threatening illness to progression to death to bereavement – in a hypothetical society where palliative care is fully or at least reasonably developed and integrated into health care. Of course, children can die from a variety of very different diseases – different in terms of age of presentation, disease trajectory, availability of disease-modifying treatments and impact on quality of life – and any chosen model will only encompass several and certainly not all these conditions. We purposefully don’t make suggestions about how exactly different elements should be achieved. Every country will have its own way and there is certainly no one model that can boast to be “gold standard”.
This said, let us imagine for a moment an average family with a new-born baby, who on the day of his birth seems as healthy and normal as any other child. He will have screening tests taken, and one day the paediatrician will call the parents to tell them the results. Their child has a rare incurable disease from which he will die, though treatment exists to slow down its progression and prolong life up till about 25-30 years.
There are several elements of good care for this family:
- When the paediatrician explains the situation to the family, it is his job to do it carefully, providing both full information (not withholding any facts either about certain death or about all that can be done to prolong life and secure quality of life) and empathic support. The parents leave after the consultation (or a series of consultations) with knowledge of what they are facing and a feeling of security and certainty that professional support in all stages of the child’s life and death will be available.
- During all the years of the child’s disease progression health care professionals are active in offering the most effective treatment that exists to prolong life and minimize impact on quality of life. Both human and financial resources are available for this and the family is guaranteed that everything possible will be done.
- As the disease inevitably progresses, the balance between potential benefits of available medical interventions and the burdens imposed by them changes. Every decision around medical interventions is made together with the family (including the child, where it is appropriate) in a context that allows dual goals of care – the goal to prolong life and the goal to avoid needless suffering. Eventually, decisions are made to withhold certain potentially life-prolonging but overly burdensome treatments – up to withholding resuscitation and allowing natural death.
- The disease progression is accompanied by a huge and increasing symptom burden that impacts the child’s and family’s quality of life. Closer to the end of life the symptoms and the suffering increase (pain, difficulty breathing, difficulty eating, nausea, depression, insomnia). At all stages health care professionals are active in assessing and managing symptoms, often using controlled medications (ensuring the child’s safety and the family’s comfort with them) and aiming at allowing the child to stay at home and in their usual environment as long as possible. At the end-of-life everything is done for the child not to suffer and for the whole family to be in a preferred place (be it home, hospital or hospice). The child, who is already a young adult, dies peacefully surrounded by the family who follow into their bereavement with a sense of having done the best for their child – up to the point of letting him go.
The contemporary Russian formula
Debates around palliative care are often focussed on the availability or otherwise of certain specialised services (such as hospices, community care teams, hospital-based palliative care teams). In Russia, however, it is not clear whether the issue is so much the shortage of specialised services as it is the lack of a general appreciation for children’s rights (reflected in the basic approach to health care).
In our work with children suffering from life-limiting diseases we see many examples of unrelieved suffering: a little boy with terminal cancer and fear of needles, who’s mother had to fight for pain control and could only in the last few days receive injectable morphine (oral fast-acting formulas, which are the gold standard of pain control in the world, are not available); a boy of 18 with Duchenne muscular dystrophy, who suffered from severe breathlessness, couldn’t receive medicines for it and lived his last months in constant fear of suffocation; a little girl in persistent vegetative state after a complicated open brain surgery, with intractable seizures, who was mechanically ventilated and artificially fed for over a year during which the family literally lived with her at the hospital until she died.
‘Debates around palliative care are often focussed on the availability or otherwise of certain specialised services. In Russia, however, it is not clear whether the issue is so much the shortage of specialised services as it is the lack of a general appreciation for children’s rights’
Here is what might happen in Russia to a family with a baby with the same diagnosis that we imagined earlier.
- The paediatrician is not trained in communication skills and breaks the news in either of two ways – telling only about the life-limiting nature of the disease and even suggesting parents not to keep the child, or focusing on the difficult and burdensome treatment and assuring parents that the child will live if they “do everything right”. His job is to inform them, yet the way this is done is not a quality control issue – he will never be checked. Whatever the reason, the parents feel they have been denied the right to professionally offered information and communicational support.
- The parents search the internet to find what modern medicine can offer. Several patient/parent-led NGOs can help them find all they need to know about the treatments that can prolong their child’s life. Accessing these treatments is a constant struggle – specialists, clinics and expensive medicines and equipment are scarce, some things are hard to find, many are just not available in the country. Whatever the reason, the child is denied the right to the best available treatment (a right that shouldn’t depend on the nature of the disease).
- Once under the care of a team, clinic or specialist the child receives care “by protocol”. Little is discussed with the family and treatment decisions are made by the doctors who give the parents instructions rather than opportunities to decide what’s best for their child. Everything will be done to prolong life, and withholding potentially life-saving interventions is never an option – the law might classify it as a failure to treat or even as passive euthanasia. Burdensome treatments are given against the family’s preferences – up to intubation and mechanical ventilation. The child (young person) and parents are denied the right to practice their autonomy. We would even suggest that they are denied the right to ethical medical practice (it could be argued that the situation is against the basic ethical principles of autonomy, beneficence and non-maleficence).
- The symptom burden increases with progression, and little help is available to relieve suffering. The young person wishes to stay at home, but there is almost no support at all. There is no nurse that can come to the home, the GP has no training or experience in symptom control and is certain he doesn’t have the right to prescribe controlled medicines (opioids, sedatives), because the patient doesn’t have cancer. The last few days are a nightmare. When he screams with suffocation, the parents call an ambulance – maybe they can give him a shot of something to relieve the breathlessness and the pain? But the ambulance has nothing to offer but to take him to the hospital. The child is taken to the intensive care unit, intubated (still not having been given morphine or sedatives because of fear they will make his breathing stop) and mechanically ventilated. The parents wait outside (they are not allowed into the ICU) until they are told that their child has died. They follow into bereavement with a feeling of failure and a memory of their child’s last moments – marked with suffering, fear and loneliness. A pure and unquestionable violation of the right to maximum relief of suffering and for a dignified death.
However dark the picture we described, it is important not to hurry with speculations about “whose fault” it is and who should be responsible. It is also too difficult and absolutely beyond the scope of this article to suggest what should be done to change the situation. All we can hope for is that we managed to make it clear that the concept of palliative care goes far beyond what a children’s hospice (or any separately functioning facility) can do. Though it would have been an easy solution, even having a children’s hospice on every street will not significantly influence these issues of health care and will not change the overall level of unrelieved suffering. The concept of palliative care touches fundamental principles of health care that in Russia seem to be in serious trouble.
An issue of more than just resources...
What is the right to palliative care really about? Is it the right to a hospice or the right to a good life and a good death with all the implications that follow? Proper communication, specialised treatment, practice of autonomy and ethical decision-making and resources for symptom management.
It seems obvious to us that the persistence of fundamental barriers to the development of palliative care for children in Russia is an issue of human rights and therefore has to be addressed in a human rights context. The practice of medicine has an obligation to relieve suffering and to apply the best available evidence (both clinical and organisational) in order to achieve this end. Russia’s attempt to meet the ripening social demand for palliative care for children by pouring uncontrolled resources into establishing children’s hospice without first addressing fundamental health care problems and assessing patient’s needs shows a lack of dedication to the children who suffer and die, and yo their families. It also shows a lack of dedication to the Russian population as a whole – a population that carries a great portion of the world’s unrelieved pain and suffering, despite the country’s economic development and enormous natural and human resources.