Palliative care in liver disease: a matter of life and death

Abstract

Modern medicine has provided us with ever-increasing power to rally against the destructive forces of disease and injury and to extend lifespans. But this doesn't seem to be the case for liver disease, which is now the third most common cause of death in people of working age, with mortality increasing by 400% in the UK between 1970 and 2013. Despite the risk of death and substantial discomfort, pain, and suffering experienced by patients with advanced liver disease, referral to palliative or supportive care remains low, and more than two-thirds of patients with liver disease die in hospital, with the final year of life often marred by multiple inpatient hospital stays. In this issue, Hudson and colleagues report the results of a nationwide analysis of all patients who died from cirrhosis and required large-volume paracentesis in their last year of life in England over a 2-year period. They find that use of day-case large-volume paracentesis services in the last year of life was associated with lower costs, reduced pressure on acute hospital services, and a lower probability of dying in hospital compared with unplanned care, highlighting the importance of advance planning of care for both patients and health-care systems. However, the often young age of patients, potential for disease reversibility, and variable disease trajectory—with periods of decompensation followed by stabilisation or improvement—of liver disease often hinder decision making about when, or if, to begin palliative care, especially for patients awaiting transplantation. Compounding matters, pain management—a cornerstone of effective palliative care—can be particularly challenging in patients with end-stage liver disease because of the possibility of renal toxicity with NSAIDs and the potential for opioid side-effects to complicate pre-existing hepatic encephalopathy. Importantly, stigma and the association of some liver diseases with alcohol or substance misuse leaves many patients without sufficient social support or advocates. Discussing care plans that acknowledge the proximity of death is particularly difficult when patients are receiving ongoing interventions aimed at cure or extension of life. But parallel provision of supportive and curative treatment—with symptomatic and pain relief balanced against the patient's transplant status—allows decisions to be fluid and ongoing, not excluding the possibility of transplant and recovery, but preparing for less favourable outcomes as disease progresses. Palliative care should be multidisciplinary, particularly when interventionist care is ongoing, and should include hepatologists, transplant teams, nurses, psychologists, psychiatrists, and primary care physicians, as well as the patient's family and friends. Importantly, ongoing discussions need to clarify a patient's priorities, balancing life extension with pain and symptom relief—eg, many patients report that they would rather die than live in a coma or with a ventilator or feeding tube. Given the lack of focus on palliative care for liver disease in countries with adequate resources, it is perhaps unsurprising that palliation is significantly overlooked in low-income settings, although for vastly different reasons. The Lancet Commission on palliative care estimated that, of the 298·5 tonnes of morphine-equivalent opioids distributed in the world per year, only 0·1 tonne goes to low-income countries. These inequities in the availability of simple measures to alleviate end-of-life pain and suffering are astounding, especially as the burden could be substantially alleviated with effective, low-cost interventions. However, opiophobia, the need to prevent non-medical use of controlled substances, and the focus of policy makers and funders on extending life and productivity limit prioritisation of palliative care in resource-scarce settings. This oversight is further underlined by the fact that palliative care is not specifically mentioned in the Sustainable Development Goals, despite being an essential part of universal health coverage. With ageing populations and concomitant increases in chronic and non-communicable diseases, the need for palliative care is set to grow worldwide. All countries, regardless of level of income or development, need to take action to improve end-of-life care and reduce the burden of serious health-related suffering. The Lancet Commission details an affordable, essential package of palliative care and pain relief services (including medicines, medical equipment, and human resources) that should be made universally available. Medicine can and should enable all patients to live to the end of their lives without pain and suffering, and with dignity and autonomy. Although efforts to improve palliative care should not detract from those to prevent death and fight disease, it is important to remember that—even as patients slip out of the reach of cure—medicine still has a vital role to play. For more on liver disease in the UK see Lancet Commissions Lancet 2014; 384: 1953–97For the Article by Hudson and colleagues see Articles page 95For the Lancet Commission on palliative care see Lancet 2017; published online Oct 17. http://dx.doi.org/10.1016/S0140-6736(17)32513-8 For more on liver disease in the UK see Lancet Commissions Lancet 2014; 384: 1953–97 For the Article by Hudson and colleagues see Articles page 95 For the Lancet Commission on palliative care see Lancet 2017; published online Oct 17. http://dx.doi.org/10.1016/S0140-6736(17)32513-8 Cirrhosis with ascites in the last year of life: a nationwide analysis of factors shaping costs, health-care use, and place of death in EnglandThe use of day-case large-volume paracentesis services in the last year of life was associated with lower costs, reduced pressure on acute hospital services, and a lower probability of dying in hospital, compared with patients who received exclusively unplanned care in their last year of life. Wider adoption of day-case models of care could reduce costs and improve outcomes in the last year of life. Full-Text PDF Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the Lancet Commission reportIn agonising, crippling pain from lung cancer, Mr S came to the palliative care service in Calicut, Kerala, from an adjoining district a couple of hours away by bus. His body language revealed the depth of the suffering. We put Mr S on morphine, among other things. A couple of hours later, he surveyed himself with disbelief. He had neither hoped nor conceived of the possibility that this kind of relief was possible. Mr S returned the next month. Yet, common tragedy befell patient and caregivers in the form of a stock-out of morphine. Full-Text PDF