5 key factors to consider during end-of-life care
Caring for terminally ill patients presents unique ethical challenges for clinicians, particularly when it comes to deciding whether sedation is effective or even necessary. It is important to understand the medical ethics involved in end-of-life care, which patients qualify for sedation (and at what point), and which medicines are effective in this process.
1. Learn what refractory symptoms palliative care sedation is for
End-of-life patients experience a variety of symptoms that can be frightening for their loved ones to witness, explained French researchers led by Cédric Daubin in “Ethical reflections on end-of-life signs and symptoms in the intensive care setting: a place for neuromuscular blockers?,” including gasping, visual or auditory hallucinations, excessive respiratory secretion, myoclonic jerks, and severe diarrhea.
In “National Hospice and Palliative Care Organization (NHPCO) Position Statement and Commentary on the Use of Palliative Sedation in Imminently Dying Terminally Ill Patients,” Timothy W. Kirk et al. describe the most common refractory symptoms that result in palliative care sedation, including:
- And restlessness “declared by the patient—or the patient's surrogate—to have risen to the level of intolerable suffering”
They mention proximity to death as an important qualifier but also acknowledge that “there may be some situations in which patient suffering is so severe and refractory to other interventions that proximity to death becomes far less important than the relief of suffering itself.”
However, Daubin and the other researchers acknowledge that,
“End-of-life signs and symptoms pose a difficult problem through how they are seen, interpreted, and represented, notably in terms of possible suffering experienced by the patient. Faced with a patient prey to disturbing manifestations of a prolonged dying process, those present (caregivers and loved ones) are confronted by their own powerlessness and finiteness.”
2. Investigate whether palliative care sedation treats pain — or just perceived pain
Indeed, it’s at least in part the comfort of caregivers and loved ones to which palliative care sedation caters. Daubin et al. discuss the case of a mother who witnessed her end-of-life fourteen-year-old daughter encounter agonal respiration preceding death:
“The mother said that she wished she had not seen her daughter gasping, that she was convinced that her daughter had suffered and that in her dreams she frequently relived her daughter’s last unbearable moments. [...] Among the many arguments [for palliative sedation,] two are particularly worthy of our attention since they lie at the heart of the dilemma facing caregivers[:]
- What a patient may or may not feel in the gasping phase of the dying process
- The obligation felt by caregivers to alleviate the distress experienced by the patient’s loved ones for whom the suffering perceived in the gasping respiration becomes intolerable.”
Though the symptoms are frightening, Daubin et al. question whether gasping causes pain:
“Everything suggests that gasping patients do not feel pain or respiratory discomfort since clinically there is no objective evidence of residual consciousness. [...] At this stage of the dying process, medication offers nothing and should give way to support not only of the dying patient, but also of the patient’s loved ones.”
Not all palliative cases are appropriate for sedation. In this continuing medical education session on palliative care sedation, Dr. Steven M. Smith explores three cases with potential for end-of-life sedation, including:
- An 18-year-old male on a high dose of opiates with end-stage cancer demonstrating significant decline, severe pain, worsening delirium, and an inability to eat or drink.
- A 12-year-old patient in concurrent care hospice with a neurodegenerative disorder. Overall stable with optimized medical management, but worsening agitation.
- A three-year-old patient removed from ventilatory support with neurological impairment, low symptom burden, and a prognosis of days. The patient’s parents are concerned about unnecessary suffering.
While Smith explains that the first case is the most straightforward for effective palliative care sedation, the other two present unique challenges with which physicians caring for end-of-life patients should be familiar — especially considering ethical challenges in pediatric palliative care that can also apply to adult care. Daubin and the other authors continue:
“What is to be done? Shorten [...] the last convulsions, which are often seen as violent manifestations of a body locked in a final battle against certain and imminent death? [...] Or instead respect this ultimate moment of life, this unique and singular time that everyone should be able to live through, without having their last moments of life purloined, whatever the cost to loved ones and caregivers?”