HEALTHCARE ACCESS: Palliative care awareness critically low despite its recognition as a human right

The recent interest, discussions and articles in the very important justice concerns for people with life-limiting and life-threatening illness have included mentions and suggestions of palliative care as an important component. In all these pieces, we have come away with a real concern that palliative care is very poorly understood, at best, and that perhaps only lip service is being paid to what is actually recognised as a human right. So, what is palliative care? Palliative care should be part of Universal Health Coverage, as endorsed by the World Health Assembly and according to United Nations Sustainable Development Goals: compassionate, dignified and quality palliative care for all those who suffer from life-limiting and life-threatening illness. We therefore write to start to unpack and explore what is meant by the term “palliative care” – what it is, and what it is not.The following starts the World Health Organization’s definition of palliative care – “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.” Palliative care is intrinsically person-centred, and therefore is complex as an “intervention”. Quality palliative care requires a dedicated inter-disciplinary team working together actively, to be able to support and care for the whole person and their family. Journey of illnessTherefore, various professionals and carers all play their parts, ideally over an extended period of time, from diagnosis and along the journey of illness, through the phase of dying and death. Palliative care continues after death, to support bereavement care. Members of a palliative care team include the patient and their family, nurses, social workers, doctors, occupational therapists, physiotherapists, speech therapists, dieticians, counsellors, psychologists, spiritual carers, and more. Palliative care can and should occur wherever the person in need of such care is found – this can be in an intensive care unit, a general hospital ward, an outpatient clinic or doctor’s rooms, a long-term care facility and in the home – it should be available everywhere!Palliative care can be conceptualised as a puzzle – the care provided for each individual will be unique to the needs of the person, and therefore the “care puzzles” will necessarily be individualised and appear unique. Care is optimised when all domains of quality of life are well cared for – specifically the physical, psychological, social and spiritual domains. Therefore, care that includes only one or two components of the different domains of quality of life (such as only pain and symptom management, or only counselling) is important care, but can not be considered comprehensive palliative care.Research studies advise that palliative care should be started early in the disease, so that quality of life can be positively affected for as long as possible. Palliative care complements all disease-directed medical care. Expertise in supporting the management of physical symptoms, such as pain, shortness of breath, nausea, vomiting and fatigue include medical management and non-pharmacological management.The medical aspect of palliative care is called palliative medicine. The World Health Assembly stated that palliative care is an ethical responsibility of health systems and that all healthcare personnel should be trained in basic palliative care as a minimum requirement. Palliative medicine specialists are essential in leading quality standards for the medical care of the patient requiring palliative care. However, globally there are insufficient specialists and so we advocate for all doctors to be able to provide, at minimum, basic palliative care to any patient in need. Much work has been done in South Africa to advance basic training at undergraduate level and for post-qualification continuing professional development. However, basic palliative care should not be confused with specialist palliative medicine, and access to palliative medicine specialists, when needed, should be routinely possible. Specialty and sub-specialtyCurrently this is not the case in South Africa. Once palliative medicine is recognised as a specialty and sub-specialty in South Africa, with active training of such specialists, there will be far better understanding among doctors of the scope and depth of palliative medicine and therefore the range of possible care and treatment approaches and options for patients in need of complex palliative care. Importantly, palliative medicine plays an active and vital role in anticipating and preventing potential suffering. To do so, early palliative medicine involvement is essential. This involves careful discussions and active advance care planning. Palliative care assists best in improving quality of life and in preventing suffering when symptoms can be anticipated and potentially avoided, or addressed early and as expected, when anxiety around potentially distressing symptoms can be reduced, and when a palliative care plan can be put in place early in a proactive, thoughtful and careful manner. This early control of symptoms is then empowering for patients and families, rather than disempowering.Considering the common symptom of pain: a patient for whom starting doses of oral liquid morphine are insufficient to relieve pain should not think that this means morphine does not work. Dosing needs to be individualised, and it is typically better to treat pain early rather than allowing it to become unbearable, as pain is then also commonly associated with significant levels of anxiety, and becomes more difficult to control. Pain levels can change as the underlying disease worsens. Therefore, a dose of morphine that was initially sufficient may need to be increased (any number of times, over a period of time) – not due to the development of tolerance, but due to increased pain from underlying disease. When taken correctly, morphine will only cause sleepiness, confusion and nausea for between 5 and 7 days after initiation, whereafter these side effects disappear, but pain relief and function are attained. Controlling painIn instances where increasing doses of morphine are insufficient to control a patient’s pain, a comprehensive palliative care plan would include alternate analgesic options, as well as non-pharmacological interventions as appropriate for the patient, thus providing person-centred comprehensive care. This requires a knowledgeable and confident doctor, and also trust between the patient, family and medical team. It also requires compassionate, clear and informed discussion. Doses often need to be adjusted to optimise the balance required and preferred by each person, for their own pain control and function. Therefore, ongoing contact between the doctor and patient is needed. Research consistently shows that quality palliative care improves quality of life.End-of-life care is the specific component of palliative care that is provided when the person is in their final six to 12 months of life. During this phase, care needs increase dramatically, and care decision-making can be challenging. The patient and family need active support in this phase – a trusting relationship with their healthcare team is essential. As is a healthcare team sufficiently trained in best practice and evidence-based palliative care. There is a misunderstanding that morphine given to patients at the end of life hastens death. This myth is perpetuated by poor (and last-minute) prescribing practices of doctors who are not adequately trained or experienced in palliative medicine and the related pharmacology. Immense implicationsThis has immense implications for patient choice regarding medication taken for pain and symptom control near the end of life. Patients need knowledgeable doctors, and patients need to trust their doctors in prescribing morphine – patients should be able to trust that the morphine (or any other opioid) is prescribed only as would be necessary for symptom relief, at a dose proportional to the severity of the underlying symptom. Morphine prescribed in this careful and proportionate manner does not result in patients dying – hastening death is never the intention of symptom treatment prescribed by a palliative medicine specialist.One of the questions in the validated African Palliative Care Association (Apca) Palliative Outcome Scale is: “Have you felt that life is worthwhile?” Holistic palliative care intends to, and can, positively influence a person’s sense of meaning and purpose developing over time, with affirmative responses to this question despite underlying disease progression. Palliative care is, at its core, care. It is a persistent stance that where suffering exists, we will continue to work to comfort and relieve the suffering as far as is possible. Palliative care professionals understand that we work in a place of intrinsic dilemma: suffering exists, and by definition there is no “cure”, no magic wand. We actively work to address the suffering caused by any life-limiting disease, so we look for all the means available to relieve suffering, while walking the journey and accompanying the suffering. This requires time, and it requires trained, skilled, dedicated human resources. There are no short cuts.Too little recognitionThe advances made in increasing the access to palliative care in South Africa have been hard fought by a core group of dedicated individuals and teams. There has been far too little recognition of and financial input into this field, and the result is that we are dramatically failing patients and their families. Access to palliative care, which is a basic human right, is very limited in South Africa. We welcome the updated national policy on palliative care that has the potential to greatly improve access to this care. The integration of quality palliative care has the potential to strengthen our healthcare systems, support appropriate decision making and resource utilisation, improve patient care and relieve suffering. As palliative care professionals we do this at an individual level. Access to quality palliative care is needed universally. As a society, are we able to advocate for the vulnerable, and expect access to this human right? Access, for every person in need of palliative care, is intrinsic to the possibility of being able to honour people with serious illness, enhancing their dignity and quality of life. DMDr Lindsay Farrant is a senior lecturer in the Faculty of Health Sciences, University of Cape Town. Dr Colleen Cox is a palliative oncologist based in Durban, KwaZulu-Natal, and Liz Gwyther a professor in the school of Public Health and Family Medicine at the University of Cape Town.