A guide to end of life care: recognizing dying, advance care planning, and symptom management

Doctors from all backgrounds and specialties should have the ability to recognize patients who are deteriorating and dying, and should be able to provide compassionate and holistic care to patients at the end of their lives. Illness trajectories and functional performance scales can be useful for prognosticating. Considering de-escalation decisions in frail or deteriorating patients is an important proactive step to allow the patient dignified care as they approach the end of their life. Advance care planning discussions can be initiated by any health professional to build an idea of what is important to a patient approaching the end of their life. Subcutaneous anticipatory medications should be prescribed for patients in the last days of life to manage symptoms of pain, nausea, agitation, and respiratory secretions. Looking after patients towards the end of life is a skill that should be prioritized by doctors hospital-wide, including in surgical specialties where the often complex nature of patients means it is inevitable that deaths will occur. As clinicians we have only one opportunity to allow someone a kind and dignified death, and this experience is one that remains with families and loved ones throughout their lives. Through training all doctors should develop skills to identify dying or when treatment interventions may be futile; to sensitively communicate this with patients and families; and provide compassionate care for patients during their final phase of life. In the UK the General Medical Council definition of ‘End of Life’ refers to patients who are likely to be in their last 12 months of life, and this applies to around 30% of hospital inpatients1. Identifying these patients allows them the opportunity to proactively make decisions about their future care. Having a familiarity with the three main trajectories of illness (Fig. 1) is helpful for prognostication when patients have a predominant underlying co-morbidity. The three main trajectories of illness Focusing on death due to malignancy, as these patients are frequently surgical patients at some point in their journey, the common picture seen is a functional deterioration that typically becomes evident in the 12 weeks before death2,3. Signs indicative of deterioration include increasing fatigue, anorexia, cachexia, and increasing dependence on others for activities of daily living. There may be accumulation of symptoms or repeated unplanned hospital admissions4. Functional performance status can be measured using widely accepted frailty scales such as Karnofsky or Rockwood scores4. Not all deaths can be anticipated so early in a patient’s journey, and 10% of deaths occur more acutely and unexpectedly1. In these situations it is important that a patient’s deterioration is recognized and there is realistic consideration into whether treatment escalation is likely to be of benefit or whether treatment de-escalation is more appropriate. A common challenge faced in the surgical setting is decision-making surrounding initiating or continuing artificial nutrition and hydration in deteriorating patients. Unfortunately there is limited evidence base to support decision-making on this subject. Although clinically assisted nutrition is not indicated in cancer-associated cachexia it may be considered in patients with potentially reversible inability to absorb or ingest nutrients, for example in cases of malignant bowel obstruction where there is planned surgery or expectation the obstruction will resolve. Patients receiving artificial nutrition should have a clear plan defining the objectives of the treatment and conditions for withdrawal of treatment, and this plan should be made in conjunction with the patient and family. Intravenous fluids are commonly initiated in bowel obstruction where there are high-volume fluid losses and the patient is at risk of dehydration. Regular assessment of the benefits of this intervention is necessary and withdrawal of fluids should be considered if the patient develops adverse effects such as fluid overload. It is not routine practice to initiate intravenous fluids in the last days of life as there is no evidence to suggest they improve quality of life or prolong survival, and it is accepted that when patients are naturally dying from a malignant process their thirst sensation diminishes. Due to the lack of definitive recommendations for practice, decisions should always be individualized and regularly reviewed. Advance care planning is an internationally recognized term referring to the process of engaging a patient and nominated relatives or friends in structured discussions about their wishes for the future4. Often in the latter stage of life patients’ priorities shift from seeking life-prolonging intervention to preferring an emphasis on comfort and quality of life, ultimately equating to fewer interventions and hospital attendances. Advance care planning discussions may be initiated during an acute hospital admission when a patient deteriorates, or in a more routine setting in advance of expected deterioration. Patients may wish to discuss under what circumstances, if any, they want to be admitted to hospital, whether they would want investigations such as blood tests or radiological imaging if they were to become more unwell, and what sort of treatments they would want to receive for potentially reversible problems. Careful deliberation should be given to exploring the risks and benefits of surgical management in patients who are likely in their last year of life, considering how the proposed intervention might impact on the patient’s quality of life for their remaining time. These discussions are an opportunity for healthcare professionals to sensitively include and inform patients in treatment escalation decisions such as whether attempts at cardiopulmonary resuscitation would be appropriate. Patients may also wish to express views on organ donation, their preferred place of death, and any specific spiritual or religious needs they may have. Referral to a specialist palliative care team should be considered in a timely manner for patients coming towards the end of their lives with complex symptom burden or psychological needs. Whereas some patients remain asymptomatic until they die, it is not uncommon for patients to experience new or worsening symptoms as they approach death. Medications to manage these symptoms can be administered subcutaneously when the patient becomes too weak or not responsive enough to take medications via the oral route. It is good practice for these ‘anticipatory medications’ to be prescribed for patients in their last days of life (Table 1). Example of anticipatory medications prescribing5,6 Example of anticipatory medications prescribing5,6 Strong opioids are often warranted in the palliative setting to provide adequate analgesia for complex pain. Different practices are adopted worldwide; however, oxycodone and morphine appear to be among those most commonly used first line7. The metabolites produced when morphine is metabolized by the liver are renally excreted and can accumulate in renal failure, causing toxicity. Oxycodone is preferred for patients with poor renal function, although it should also be avoided if estimated glomerular filtration rate < 10 ml/min/1.73 m2 Alfentanil is often considered the drug of choice for patients with severe renal impairment. Exact dosing practices vary between localities and internationally, but when initiating opioids in patients naïve to opioid medication a starting dose of morphine 2–5 mg subcutaneously up to one hourly as required is generally accepted6. This dose should be titrated according to requirement and response. If a patient already takes a regular long-acting opioid but the oral route is no longer viable, this should be converted to the equivalent subcutaneous dose to be administered via continuous subcutaneous infusion over 24 h. The breakthrough dose is calculated as 1/6 of the total daily dose of long-acting opioid. For example, a patient who takes modified-release morphine 30 mg BD is no longer able to tolerate their oral medication due to reduced responsiveness. Note that opioid conversions can vary depending on the resource used, but an appropriate prescription for this patient would be morphine 30 mg/24 h via continuous subcutaneous infusion with a breakthrough dose of morphine 5 mg up to every hour as required. If doses are rapidly escalated or patients develop renal failure, accumulation of opioid can lead to toxicity, signs of which include drowsiness, vivid dreams, visual hallucinations, confusion, myoclonic jerks, and in severe situations respiratory depression. This complication can usually be managed by reducing the opioid dose or switching to a different one without the need for a reversal agent. Giving an opioid antagonist would risk complete reversal of analgesia, resulting in a pain crisis, and should be reserved only for severe life-threatening opioid toxicity. Medication for nausea and vomiting should be carefully selected following history taking and assessment to establish the underlying cause for the symptoms. Consider a prokinetic agent such as metoclopramide in cases of gastric stasis (for example secondary to peritoneal disease, ascites, or hepatomegaly). Prokinetic medications should be avoided in complete bowel obstruction as they worsen colic and increase the risk of bowel perforation. For nausea and vomiting of metabolic aetiology (hypercalcaemia, renal failure, tumour toxins), haloperidol can be used alongside treatment of the aggravating factor if appropriate. For intracranial disease and vestibular causes of nausea and vomiting, cyclizine is considered an appropriate antiemetic. For multifactorial or refractory vomiting, levomepromazine may be considered (Table 2). Selection of antiemetic agent is dependent upon aetiology Selection of antiemetic agent is dependent upon aetiology Delirium and agitation can present in the last weeks of life with a prevalence of up to 88% in the days and hours leading to death8. Reversible causes such as urinary retention and constipation should be considered and eliminated. Symptomatic management is commonly with subcutaneous midazolam starting at 2.5 mg up to hourly as required5,6. For patients requiring multiple doses consider administering via continuous subcutaneous infusion. Alternative medicines to consider include levomepromazine, haloperidol, and in extreme circumstances phenobarbital, but this would generally be on the advice of a specialist palliative care team. Accumulation of secretions in the respiratory tract causing noisy breathing is a common sign that develops in patients imminently approaching death. Noisy secretions affect up to 92% of people at the end of their life9 and following onset of secretions most patients die within 48 h10. Although the mainstay of treatment is with anticholinergic medications, a Cochrane review has concluded that there is no evidence that these medications are superior to placebo in the treatment of noisy breathing11. Time should be spent educating relatives about the potential for secretions to develop, addressing their concerns, and providing reassurance about this common symptom. All doctors will experience looking after dying patients and it is imperative that as much as possible is done to ensure deaths are peaceful and dignified. This includes early recognition of deteriorating and dying patients; making plans and decisions with patients about their future medical management; and assessing and managing symptoms to maximize comfort at the end of their life. Not applicable. Madeleine Carr (Writing—original draft, Writing—review and editing), and Miriam Rigby (Writing—original draft) The authors declare no conflicts of interest regarding this manuscript. Data sharing is not applicable to this article as no new data were created or analysed in this study.