HIV/AIDS
Until 1996, palliative care was the core clinical response to HIV. The advent of anti-retroviral therapy (ART) has drastically changed HIV mortality, with 770,000 AIDS-related deaths in 2018 compared to 1.7 million in 2004. However, ART access is suboptimal in many countries, and mortality rates from advanced AIDS remain high. Eastern and Southern Africa continue to experience the highest mortality (330,000 deaths in 2018). For those who die of AIDS-defining illnesses, the burden of pain symptoms psychological and spiritual concerns remains high.
The need for palliative care is changing. Mortality projections to 2060 predict a decline 2016 to 2060 in AIDS-related death, attributable to the global 90x90x90 strategy. For those who die of AIDS-related illnesses, the traditional roles of palliative care will continue to be needed. Despite evidence of barriers to accessing and delivering palliative care for people living HIV, it is effective in terms of pain and symptom control, anxiety, insight, and spiritual wellbeing. However, suboptimal communication, poor medicine availability, poor provision of
paediatric palliative care, and exclusion of those key populations most affected continue to pose challenges.
With the global focus on testing, treating and maintaining viral suppression, the phenomenon of ageing with HIV presents new roles for palliative care. The principles of person-centred care remain pertinent in light of high burden of pain, symptoms, spiritual and psychological distress alongside ART, with pain prevalence higher than matched HIV negative controls. Integration of palliative care principles into outpatient HIV care can improve quality of life, mental health and psychosocial concerns.
As people age with HIV, comorbidity is become increasingly common among PLWH. Since 2011, there has been a 44% increase
in infection-unrelated malignancies among HIV-infected people in Europe. Malignancy survival rates are worse for PLWH. Non-AIDS cancer is now the leading non-AIDS cause of death for PLWH in the USA, Europe and Australia. By 2030, 28% of PLWH will have at least three non-communicable diseases (largely cardiovascular disease).
For those who die with HIV, an international comparison found that people living with HIV are more likely than cancer patients to die in hospital. In London UK, even when death of a person living with HIV was expected, 61% of died in hospital, and one third had no documented end of life discussion. Ensuring that all those who die an AIDS-related death can access palliative care remains a global challenge. The new challenge is to ensure that people living with HIV age well with their disease, and that the principles of person-centred holistic palliative care are not lost.
People Affected by Haemorrhagic Fever or Serious Epidemic Infections
Life-threatening infections can cause many types of physical, psychological, social, and spiritual suffering, especially when they occur as epidemics. Even geographically limited epidemics, such as the 2014 Ebola epidemic, can cause extreme and multifaceted suffering requiring intensive palliative care, and pandemics such as that due to COVID-19 can generate a need for integrated life sustaining treatment and palliative care on a massive scale. In all cases, palliative care must be integrated with effective infection control that prioritizes those at
greatest risk.
The prevalence, severity, and duration of disease symptoms vary depending on the infection. Physical symptoms of Ebola infection typically include nausea, vomiting, diarrhoea, body aches, fever, and in late stages bleeding, respiratory distress and encephalopathy. Aggressive control of nausea, vomiting and diarrhoea not only relieves unnecessary suffering but also can protect against volume depletion and
electrolyte derangements and hence may improve survival. It also can reduce contamination of enclosed, shared spaces within Ebola treatment units with virus laden body fluids, hence lessening the risk of transmission to health-care workers.
In some wide-spread life-threatening infections, such as multidrug-resistant tuberculosis, adverse reactions to treatment commonly cause significant suffering and make adherence to treatment difficult. Thus, pain and symptom control are crucial for a variety of reasons. During epidemics of life-threatening infections, suffering may result not only from the disease but also from the public health response. While quarantining people exposed to an epidemic life-threatening infection and isolating those with active infection may be necessary from a public health perspective, it also may exacerbate psychological and social suffering. Quarantined and isolated patients are at risk for anxiety, depression, and PTSD. Wards should be organized to enable patients to communicate with family members/friends at a distance or with mobile phones.
Patients should be informed regularly about their condition and prognosis in a way appropriate for their culture and education/literacy level. The poor and socially marginalized may be at highest risk for infection, death, and social suffering with least access to infection control and psychosocial supports. Thus, infection control and psycho-social-spiritual support should be organized for all affected people, including patients, family members, and those living with income or food insecurity.
People Affected by Serious Injury or Poisoning
Moderate or severe suffering typically associated with chronic life-threatening illness also may occur acutely in association with both life-threatening and non life-threatening conditions such as injuries, burns, or poisoning. Many patients with serious injuries die so quickly that there is no time to institute palliative care other than pain relief for the patient and bereavement support for the family. However, relieving the acute suffering of the immanently dying and providing bereavement support are crucial humanitarian tasks. Also, it is estimated that at least 30% of those who die from injuries or poisoning suffer from pain or other symptoms and survive long enough to benefit from palliative care.
It also is estimated that at least twice the number of patients who die of injuries do not die yet need palliative care or pain relief. In settings where pain medicine does not yet exist as a specialty and is not a major topic in medical education, prevention and relief of pain from trauma, burns, and surgery typically are inadequate. Inadequately controlled acute pain due to trauma or surgery can have serious health consequences including:
• Cardiovascular side effects such as arrhythmias, myocardial infarction,congestive heart failure, haemorrhage, and stroke;
• Deep vein thrombosis and pulmonary embolism;
• Atelectasis and pneumonia;
• Hyper-catabolic state and tissue wasting;
• Compromised immune function and increased risk of infection;
• Development of persistent chronic pain (especially common after limb andbreast amputations);
• Mental health problems including anxiety, depression, PTSD, impaired sleep, and demoralization.
In these settings, clinicians trained in palliative care should intervene by training colleagues in symptom control, by providing direct symptom relief, or both (WHO 2018). Many countries also lack rehabilitation medicine specialists and programs to care for people with non-life-threatening but serious disabilities such as paraplegia or quadriplegia or those due to brain injuries or congenital anomalies.
Palliative care can help to fill this void as well. Planning and implementing palliative care services should be based on assessment of the types and extent of inadequately prevented or relieved physical, psychological, social or spiritual suffering of adults and children.
This article was inspired by the Global Atlas of Palliative Care 2nd Edition. Download your copy today!
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