Ambulance service personnel regularly come into contact with patients who are approaching the end of their lives—many more calls than ambulance services traditionally attended. This group of patients also tends to present in the out-of-hours period where support from specialist services is extremely limited. End-of-life cancer presentations often require a specialist approach, problem-solving skills and increased knowledge of the specific issues that may arise.
The Gold Standards Framework (Royal College of General Practitioners, 2011) considers that patients are approaching the end of their life when they are likely to die within the next 12 months. In order to ascertain this, it encourages relevant health professionals to ask themselves the ‘surprise question’: Would I be surprised if this patient were to die within the next 12 months? If not, they are considered ‘end-of-life’. This provides the context for the types of patients living with cancer whose care will be discussed in the current article.
This article discusses a series of common presentations in cancer care, and discusses possible evidence-based management options which may be available to paramedics. The topics discussed are the psychological effects of a terminal diagnosis; neutropenic sepsis; breathlessness; and breakthrough pain. Some aspects of care discussed are dependent upon local protocols and patient group directives (PGDs). The evidence presented is designed as an overview of management options rather than a robust literature review.
What is important to patients and families?
For people with cancer who are terminally ill, an unexpected hospital attendance can be distressing and tiresome. Such visits made close to the end of life can be considered an indicator for poor palliative care (Barbera et al, 2010). Symptoms can often be managed at home, with a referral being made to relevant community healthcare providers for ongoing symptom management.
A good death
The literature surrounding a good death was reviewed by Meier et al (2016) with the intention to identify what is important to patients and how they would like to achieve a death that is in accordance with the patient's wishes. Thirty-six qualitative studies met eligible criteria and eleven core themes were identified. Among these themes, key attributes were highlighted such as freedom from physical pain; having a good family relationship; maintaining dignity and respect as an individual, and control over treatment; and dying in one's preferred environment. Payne et al (1996) compared the perceptions of hospice staff and patients of what constitutes a good death. Their findings suggest that being pain-free was important to both parties, while staff also concentrated on the feelings of the patient's loved ones and the overall family acceptance. However, the results also indicate that hospice staff and patients have different views about what characterises a good death. It is limited to hospice and hospital staff; however, prehospital health professionals can adhere to patients' wishes by helping them to maintain dignity and assisting them to be symptom-free.
Psychological effects of diagnosis
Living with a terminal cancer diagnosis can create new, or exacerbate pre-existing, psychological feelings of distress (Adler and Page, 2008). The Kübler-Ross Grief Cycle (Kübler-Ross and Byock, 1969) describes the emotional states experienced by individuals who are terminally ill, which have emerged from a collection of qualitative case studies with dying patients. The stages of grief were observed in those who were dealing with terminal illness, including those with cancer. The model describes grief as having five different stages consisting of denial, anger, bargaining, depression and acceptance. However, it also highlights that not every patient experiences all five stages.
Denial
Multiple studies have explored and expanded upon different stages of the Kübler-Ross model. A study by Rousseau (2003) analysed the prevalence of denial of a terminal illness and found that it is frequently experienced by patients. It revealed that 26% of respondents in a hospice environment attempted to partly suppress their awareness of a terminal diagnosis and probable death. The certainty of higher percentages in an out-of-hospice setting was also mentioned, but this was not discussed further. It is rational to presume that this higher percentage is a result of patients being recently diagnosed and coming to terms with their illness. As this study was conducted in a hospice setting, the patients are assumed to be at a more advanced stage of their illness and many individuals are most likely to have chronic conditions that have developed over a greater period.
Anger
In patients with cancer, extremely low anger scores have been noted. Thomas et al (2000) observed that this could be owing to factors such as restraint of anger, repression and suppression of feelings. An applicable research piece by Bowes et al (2002) studied women living with an ovarian cancer diagnosis. They found that if any anger was experienced, this was normally related to misdiagnosis, late diagnosis, waiting for treatment and physicians/family members discounting their symptoms.
Bargaining
The same study demonstrated that bargaining was a frequent emotion experienced by the women who participated. The researchers concluded that this psychosocial concern was a result of ovarian cancer having a peak incidence in women between 50 and 60 years of age, and participants were dealing with an early or impending death without having yet ‘found a meaning in life’. In patients diagnosed at a younger age, this feeling was even more prominent.
Depression
The penultimate stage in the Kübler-Ross model is depression and can be considered the most prominent. A systematic review and meta-analysis of demoralisation and depression in patients with cancer found that the most common form of negative emotions experienced by patients with cancer was depression and anxiety (Tang et al, 2015). Tang et al (2015) noted that 15–20% of patients with advanced cancer experienced depression at some point after diagnosis; however, it was not stated at what time frame this occurred.
Depression within cancer patients is further evidenced by Williams et al (2015) who compared a cancer survivor group to a comparison group. Findings revealed that a greater portion of the cancer group had depressive symptoms as a result of their poorer health and quality of life. The evidence in this study is reliable as it was conducted over a 4-year period and compared the research group with a placebo group.
The Kübler-Ross model was created in 1969 but evidence suggests that it continues to be very relevant in patients who have a terminal diagnosis. It is important for paramedics to consider the implications of the psychological impact of a terminal diagnosis as it is common for them to visit patients in time of depression, especially when suicidal thoughts and/or loneliness are present. Paramedics should adjust their communication skills to meet the needs of the individual at the end of life, especially by talking through patients' concerns and determining whether they are currently satisfied with the level of care they are receiving. If appropriate, a good death should be mentioned and, if it has been discussed previously, arrangements in place to assist this should be identified; if none have been made, relevant referrals should take place. In these circumstances, the prehospital clinician can assist in the process of providing holistic and patient-centred care, ultimately assisting the person to achieve a good death.
Neutropenic sepsis
Chemotherapy is the most effective and widely used treatment in the clear majority of malignancies (Chabner and Roberts, 2005). Chemotherapy consists of a range of drugs that are primarily cytotoxic and are used in the treatment of cancer. It prevents cancer cells from multiplying, invading and metastasising; however, it can also damage the host's non-cancerous cells as a result of its imperfect selectivity (Skeel and Khlief, 2011). Chemotherapy has a vast number of long-term and short-term side effects, with one of the most serious being febrile neutropenia (Cameron, 2009).
Neutropenic sepsis is an acute medical emergency and a common complication of chemotherapy treatment, with an associated mortality rate of 2–21% internationally (National Institute for Health and Care Excellence (NICE) and the National Collaborating Centre for Cancer, 2012). NICE evaluated the death statistics associated with neutropenic sepsis and indicated a 50% increase in mortality rates between 2001 and 2010. These sharp increases are believed to be caused by inconsistencies with immediate management of neutropenic sepsis and delayed intravenous antibiotic administration (NICE and the National Collaborating Centre for Cancer, 2012).
Guidelines on neutropenic sepsis (NICE, 2015) recommend that health professionals take into account the severity of pyrexia in patients undergoing chemotherapy. They suggest that the most prominent sign of neutropenic sepsis is an increased or decreased temperature and a national early warning score of >5. The most common temperature criteria ranges are 37.5–39oC and below 36oC, with the average temperature of an adult with neutropenic sepsis being 38oC (Simmons, 2012).
Cameron (2009) highlights the importance of being stringent in your management approach and following pre-determined guidelines when dealing with a febrile patient who is considered at high risk of being neutropenic. This study generally applies to patients on active chemotherapy or who have received chemotherapy within the last 2 weeks. However, the UK Oncology Nursing Society (UKONS) (2016) suggests that any patient who is receiving chemotherapy or is immunocompromised (up to 2 weeks' post treatment) and has a temperature above 37.5oC or below 36oC needs urgent assessment and medical review. To further assist the prehospital clinician in his or her decision, the UKONS (2016) tool can be used to make a safe clinical decision with regards to neutropenic sepsis. Apart from temperature, it includes fatigue, confusion, bowel movements and vomiting among other factors and works on a traffic light system.
Individuals with neutropenic sepsis are likely to deteriorate rapidly and need prompt treatment with intravenous antibiotics and fluid therapy (Clarke et al, 2015). Littlewood et al (2013) mentions the importance of intravenous antibiotic administration within 1 hour of arrival at the emergency department. However, 75% of hospital patients do not currently meet this target. Prehospital time frames were not considered by the researchers, but hospital transportation should not be delayed as neutropenic sepsis is a life-threatening emergency.
Ferrer et al (2009) found that administration of broad-spectrum antibiotics within 1 hour of severe sepsis was significantly associated with lower hospital mortality than was noted in the comparison group. A systemic review and meta-analysis by Sterling et al (2015) disagrees with the time frame proposed by Littlewood et al (2013) as they found no increase in mortality rates in those administered intravenous antibiotics within 1 hour of severe sepsis recognition. Their study suggested that the current recommended time frame was not supported by strong evidence.
A systemic review by Smyth et al (2016) concluded that there is a lack of evidence around prehospital fluid resuscitation in sepsis and whether or not it improves overall patient outcome. Their study also suggested that the evidence currently available is of low quality and that prehospital interventions in sepsis have limited impact on the overall outcome for the patient. Although the evidence in the treatment of sepsis and/or neutropenic sepsis with fluid therapy in the prehospital setting is limited, evidence gathered in a hospital environment is considerably larger.
Leisman et al (2016) evaluated the association of intravenous fluid therapy within 30 minutes of severe sepsis or septic shock identification in an emergency department with in-hospital length of stay and hospital mortality. They concluded that by initiating intravenous fluid resuscitation within 30 minutes, there were 5% fewer hospital mortalities (from a cohort of 1866 patients) and the length of hospital stay reduced from 7 to 6 days, versus those who receive fluid resuscitation initiated after the 30-minute cut-off.
A prehospital clinician is likely to be the first health professional to come into contact with a patient who has neutropenic sepsis and, if able to administer fluids, the evidence by Leisman et al (2016) is highly transferable to this setting and is associated with a better outcome for the patient.
According to the evidence found, the most appropriate management of neutropenic sepsis would be to conduct a primary survey assessment and obtain baseline observations to determine the national early warning score. Caution should be used when assessing for neutropenic sepsis as the symptoms can appear to be mild and non-specific, although life-threatening in nature (Clarke et al, 2015). Adhering to the sepsis six guidelines (NHS, 2016), oxygen should be administered to maintain saturations at >94%. In addition, fluid therapy will be required.
Breathlessness
Breathlessness is a subjective experience of difficulty in breathing and is a common experience in advanced cancer with the prevalence reaching 70% (Solano et al, 2006). Therefore, it accounts for a significant proportion of emergency calls. The management of breathlessness in palliative care can be a combination of non-pharmacological measures (fan therapy, opening windows and positioning, etc), opioids and oxygen (Mularski et al, 2013). However, temporary oxygen therapy should be avoided as there is a risk of the patient becoming dependent on oxygen from a health professional (Campbell et al, 2013).
Galbraith et al (2010) analysed the benefits of fan therapy by having patients record their breathlessness on a visual analogue scale. They used a handheld fan directed at the patient's face to effectively reduce the feeling of dyspnoea. This was demonstrated by a recorded 1 cm decrease of shortness of breath on the visual analogue scale. Bausewein et al (2010) found similar results relating to the effectiveness of fan therapy in advanced disease, with 13 of 38 participants reporting positive experiences. Although they were not able to definitively conclude whether a handheld fan relieved breathless, it did appear that a group of patients benefited from using one and it should thus be considered for the management of breathlessness.
Another non-pharmacological measure is the introduction of a breathing management technique, which is believed to be a useful tool for controlling breathing patterns and anxiety. Johnson et al (2015) found that a session focusing on specific breathing techniques resulted in a reduction in breathlessness and an improved coping ability. The study's primary means of data collection was gathering patient reports of breathlessness, while performance status (trajectory of outcomes, objective measure of physical activity) were deemed less important. Breathlessness is a subjective experience so it can be argued that patient-reported breathlessness is the most important outcome measure.
Temporary oxygen therapy in palliative care should only be used if the person is hypoxic, not solely in the presence of dyspnoea (Fardy, 2016). Oxygen can be an unnecessary intervention as evidence shows there is no significant change in respiratory comfort over time in comparison with air ventilation. As noted, there is also a risk of the patient becoming dependent on oxygen from the health professional (Campbell et al, 2013).
The use of non-pharmacological interventions can be a good initial management approach as they are less invasive, contain fewer risks than a pharmacological approach and appear to be effective in reducing breathlessness.
Controversy exists around the use of opioids in episodes of breathlessness owing to the risk of respiratory depression; however, it is used frequently in the management of breathlessness in palliative care. The mechanism of opioids on shortness of breath is not clear but it has the additional benefit of decreasing anxiety and reducing the sensation of dyspnoea (Indelicato, 2006).
A study examining the use of fentanyl citrate on the patient's perception of breathing, oxygen saturations and respiratory rate in an oncology unit concluded that there was a significant improvement in 81% of patients (Coyne et al, 2002). They recorded observations before administration of fentanyl citrate, 5 minutes after and then at 60 minutes, and witnessed a rapid relief of dyspnoea after just 5 minutes. Supporting this evidence is a study by Benitez-Rosario et al (2005) that reported rapidly improved dyspnoea with the use of intranasal fentanyl citrate and no intolerable adverse reactions, including respiratory depression. In all the patients, a variable dose of intranasal opioid was given and no correlation was found between doses. Fentanyl is not commonly used in UK prehospital settings so NICE (2016) advocates that administering a dose of oral morphine 2.5–5mg should help to manage an episode of breathlessness in patients under palliative care. This ability of a paramedic to provide this treatment is subject to local PGD provision.
With the use of non-pharmacological measures, together with opioids and the management of other symptoms such as anxiety, it is possible to prevent an inappropriate hospital admission which could further distress the patient and their family. The effective management of this common symptom can assist the patient in experiencing a good death.
Pain
A systematic review of symptom prevalence in patients with cancer reported that some of the most commonly experienced symptoms were pain (45%), dyspnoea (39%) and nausea (17%) (Teunissen et al, 2007). Anticipatory medications can be prescribed to treat these common and somewhat predictable symptoms at the end of life; they are kept by the patient and administered by a health professional, usually subcutaneously by injection or syringe driver as required (Wilson et al, 2014).
Many inappropriate emergency department admissions are made relating to patients at the end of life. Yates and Barrett (2009) examined emergency admissions of patients with cancer and found that almost 50% of cases were classed as inappropriate admissions, with the patients neither needing nor wanting an admission to an acute hospital setting. This is supported by evidence that suggests most visits to accident and emergency (A&E) by terminally-ill cancer patients could have been avoided (Barbera et al, 2010). The most common reason for admission to A&E in end-of-life care is pain, particularly abdominal pain (Barbera et al, 2010). Of those patients studied by Masman et al (2015), morphine was used considerably more in the final days before death. It could be summised that this is owing to an increased frequency and intensity of pain in the days before death. It is pertinent to consider the approach to managing pain in the final weeks and days of life.
In palliation, the aim of pain management is to administer analgesia that is effective but has a half-life of several hours, so pain can be controlled quickly and safely (Barnett, 2001). A short half-life would mean more frequent and unnecessary doses, while a longer half-life is more difficult to titrate safely. Morphine is considered a gold standard in pain relief for end-of-life care because of its 4-hour half-life and the fact it can be administered by various routes, including oral and subcutaneous. Minimal pain and effort are associated with these routes of administration, which contributes to its suitability to manage end-of-life pain. Breakthrough pain can also be controlled with extra doses of the chosen opioid, the most common being morphine or diamorphine in a prehospital setting (Barnett, 2001).
Breakthrough pain
Portenoy et al (2004) defined breakthrough pain as:
‘a transitory exacerbation of pain experienced by the patient who has a relatively stable and adequately controlled baseline (background) pain’.
Breakthrough pain is a common problem in people with cancer and is associated with significant distress for the patient. Breakthrough pain typically has a rapid onset (a median time of 3 minutes for peak pain), a duration of 30–60 minutes and a high severity. Assessing the patient's pain is key to determining the appropriate management of breakthrough pain in patients with cancer (Caraceni et al, 2013). This assessment should include questions about pain to determine if the patient is experiencing breakthrough pain.
Limitations
The current article has some limitations worth mentioning. Some of the evidence is taken from non-UK settings so care must be taken when considering the extent to which practice can be altered based on this evidence. This is not designed as an in-depth review on which to base practice; rather it provides an overview of evidence for the practitioner to consider in their management of this group of patients.
Conclusion
Common symptoms in end-of-life care can usually be managed effectively in the home. Breathlessness can be managed with a mix of non-pharmacological methods and, if appropriate, low-dose opioids to reduce the feeling of breathlessness. Breakthrough pain can be managed with anticipatory medications and/or opioids. End-of-life emergencies, such as neutropenic sepsis, should be identified early in assessment and treated as emergencies. The aim of good care at the end of life is to enable a patient to die symptom-free, with dignity and in accordance with their wishes. An evidence-based approach to common symptoms can help the practitioner to achieve this.