Promised palliative care in Cyprus cannot wait until 2030

A daughter’s account of her mother’s final days in a state hospital highlights concerns over dignity and access to end-of-life supportAfter losing her mother to a “a rare and fatal” neurological illness, Mariyana Rakova knows better than most the sometimes appalling levels of palliative care offered by the state. Her mother Rayna Christodoulou died earlier this year aged 71 after undergoing a heart wrenching spell in a state hospital where she was denied dignified end-of-life care. Rakova blames a system essentially “depriving a human being of their basic rights of care and dignity, depriving me of my rights of information, making me watch and preventing me to help, robbing me from the only meaningful moments I could have left and making them horrific and traumatic”. The poignant backdrop to Rakova’s story is the state’s pledge to introduce a comprehensive state palliative care system to cover every person in need by 2030. But that deadline is utterly unreachable for those who are already terminally ill. Those people face a loose patchwork of centres providing treatment and services, and a waiting list for those who need it. The centres are currently all privately or NGO run and are primarily for cancer patients, which Rayna was not. Families ‘lucky’ enough to have secured a place for cancer patients in one of three centres – and now a fourth one inaugurated a few days ago – say they could not have hoped for anything better. The rest, left relying mostly on state hospital care, have said the conditions can be inhumane and the treatment of patients and families deplorable. The national action plan for palliative care may have been announced, but the health ministry said developing the comprehensive system needs time. By 2030, Cyprus aspires to have a system in place to support patients and their families, from the moment of diagnosis of a serious, chronic, progressive and life-threatening disease, through to death and bereavement, all according to the World Health Organisation guidelines. The law was passed unanimously earlier this year and regulates the operation, licensing and oversight of palliative care centres, setting out the requirements for establishing and operating such facilities, as well as the healthcare standards, while at the same time bolstering patient rights. In the meantime, many requiring palliative care are either not receiving it or receiving its very worst form. A daughter’s account of hospital care Rakova – a health professional herself who lives abroad – said she had been battling to obtain proper diagnosis, comfort and dignity for her mother, who had been living in Cyprus for 30 years with Cypriot citizenship. “The hospital administration failed to inform next-of-kin” when her mother was admitted to hospital and she was only made aware of her mother’s condition by her pharmacist. “My mother had been taken to the emergency department, following an episode of a brief loss of consciousness. I was informed by the ladies in the pharmacy who have my email address.” Rakova also complained about “insufficient communication” in the days before her arrival in Cyprus, “despite at least 40 attempts to communicate with the hospital”. “My mother had nearly constant seizures and tremors, unable to talk or move except for one of her hands, her eyes were in an abnormal position and her gaze was dim, she was incoherent most of the time, she smelled and was unkempt, her teeth were full of residue and she had bad breath.” Rakova presented a series of shortcomings that led to her mother being “very distressed” and “unable to speak”. “The grave state I found my mother in, without any warning, robbed her and myself of any opportunities to express her wishes, including these involved in her care,” Rakova said. She added that her mother received medication that was not suitable for her age or underlying health problems, and that patients on the same ward said her mother “was provoked by staff and deprived of basic liberties, such as walking”. What Rakova described in great detail was far from palliative care, including “the indifferent and distancing from responsibility pathologist who learnt from me that my mother could not swallow and had not eaten for two days”. In the end, Rakova’s mother was transferred to a private clinic where she passed away. “The government does not address the need of palliative care despite being reflected otherwise in the news. The cancer palliative centres remain for cancer patients only and thus declined care [for my mother],” she said. Rakova said her mother was “repeatedly called ‘yaya’ (granny) and ‘kodjakari’ (old woman) in hospital settings and suffered despicable levels of ageism on every level to justify lack of interest and essential care, including palliative”. She added that she herself was “treated as a nuisance and a conflict person”, saying she had been ignored when she asked for painkillers for her mother who could not speak. “I was waiting for hours to talk to a doctor […] I was given partial or no information, I was given incorrect and unscientific information, I was denied or given access to my mother as the staff pleased. I felt judged and intimidated.” Rakova said that “as a health professional myself, as a researcher, as a cognitive behavioural therapist, as someone trained to work with long-term conditions and knowledgeable about human pathophysiology and psychology, and as a daughter, I am appalled at the lack of professional boundaries by the very people who stand for people in their most vulnerable state.” Rakova sent a letter to the patients’ association, which said it did not have the authority to investigate cases of possible medical negligence or intervene in the clinical management of patients and referred her to the healthcare facility’s patient rights officer. Rayna (left) with Mariyana in happier times Existing centres focus on cancer patients Those palliative care centres that do exist do an excellent job. Helen was a nurse at Arodafnousa before working as matron in a private clinic. She had friends who were treated there later on. As her daughter told the Cyprus Mail, Helen always regarded Arodafnousa as a model medical centre for terminally ill cancer patients. In her 70s, Helen was herself diagnosed with aggressive cancer and died at home – as was her wish – shortly afterwards. She had contacted Arodafnousa and a medical team through the anticancer society visited her a few times. Her daughter said they were always supportive and kind. How palliative care will work under Gesy Palliative care under Gesy will be provided by centres collaborating with the Health Insurance Organisation (HIO), either in hospitals or as outpatients. The services will include specialist doctors, nursing staff, physiotherapists, clinical psychologists, hospitals and palliative care centres. Today, there are four palliative care centres. Arodafnousa in Nicosia provides palliative care at the centre or by the anticancer society at home. The anticancer society also provides treatment and support for the Evagorio in Limassol. Pasykaf cancer association and nursing agencies offer specialised services at home and supports patients across the island. A palliative care centre in Tala, Paphos, was recently inaugurated and will be operating under Hospis NGO. The Oncology Centre also provides relief for cancer patients. Other clinics across the island also provide palliative care wherever necessary, but are not listed as exclusive palliative care centres by the government. According to the government’s official website, thousands of people suffering from serious illnesses will be offered a comprehensive framework for humane, quality treatment with respect, support and professionalism at every stage of life. The new legislation covers all providers, regardless of whether they are in Gesy. It cannot come a moment too soon. HIO was contacted for a comment on progress.