Management of gastrointestinal symptoms in palliative care

Abstract

The management of symptoms related to the gastrointestinal tract is an ongoing challenge in the care of patients with advanced malignancy. Clinical symptoms are often detrimental to a patient’s quality of life. The goal of palliative medicine includes care of the mind, body, and spirit. Symptom management and improving quality of life for patients and their families is paramount. As the population ages, this results in more complex health needs and the need for a multidisciplinary team approach. This article will outline a general and systematic approach to managing gastrointestinal symptoms in palliative care; it will emphasise the importance of holistic medicine in improving a patient’s quality of life.

The RCGP curriculum and management of gastrointestinal symptoms in palliative care

The role of the GP in the people at the end-of-life, life stages topic guide is to:

Communicate effectively with the patient, their family and carer(s) regarding difficult information about disease progression and prognosis

Apply best practice principles for end-of-life care in community settings such as those described in the Gold Standards Framework

Counsel and explain for patients, families and their carers:

a holistic and personalised assessment of needs

symptom control

Co-develop with the patient, carers and family an effective plan to manage the full range of their physical, psychological, socioeconomic, cultural and spiritual needs

Prescribe effective drugs and suitable combinations of drugs, pre-empting likely side effects, and use of appropriate drug delivery systems, e.g. a syringe driver

Understand the evidence base for care at the end of life; acknowledge the appropriate use of alternative therapies while bearing in mind the evidence for their use

The RCGP curriculum clinical topic guide details emerging issues and a knowledge and skills guide that may be relevant to the management of gastrointestinal symptoms in palliative care. This article covers the following areas:

The prevalence and incidence of gastrointestinal symptoms in the end of life

Causes of gastrointestinal symptoms in end of life care

The assessment, appropriate investigation, and management of common gastrointestinal symptoms in the end of life

Management including medical treatment and non-medical including alternative therapies

The importance of advanced care planning and communication in holistic management of patients at the end of life

Our role in primary care

The majority of patients with advanced incurable disease are cared for by their GP and their family. As generalists, we must adopt a holistic approach comprised of effective communication, advanced care planning, and respect for patient autonomy.

Gastrointestinal symptoms can arise either as a consequence of the disease itself or as side effects from treatments – particularly opioids or chemotherapy. A hospice study performed in New Zealand examined the symptom burden among 200 consecutive patients who died. The most common symptoms in the last 48 hours of life were noisy breathing (56%), pain (51%), restlessness and agitation (42%), urinary incontinence (32%), dysphagia (29%) and dyspnoea (22%). Patients enrolled in hospice care generally had good symptom control, which may partly explain the relatively low symptom prevalence (Lichter et al., 1990).

There continues to remain inequity in palliative care services across the United Kingdom. The availability of good quality community-based palliative care services is important in reducing the rate of death in hospital and increasing the rate of death in a patient’s usual place of residence. GPs have a clear role and responsibility for coordinating care and anticipating and recognising those patients who may need further community or hospice-based input. Increased knowledge and skills are likely to give GPs more confidence in this role. Care home residents often receive poorer quality palliative care, and we can make a difference in supporting care home staff and possibly reducing inappropriate hospital admissions.

We can improve patient experience and symptom management by addressing some barriers to high quality of care. Factors impeding good quality care can include hesitation to take responsibility, lack of confidence or skills, time and resource pressures, non-cancer conditions, and lack of suitable care models.

A ‘good’ death is defined as ‘one that is free from avoidable distress and suffering, for patients, family, and caregivers; in general accord with the patients and families wishes; and reasonably consistent with clinical, cultural, and ethical standards’ (Gustafson, 2007).

Constipation

Constipation is one of the most common symptoms experienced by patients with advanced malignancy. The National Institute for Health and Care Excellence (NICE) defines it as a symptom-based disorder, in which defecation is unsatisfactory because of infrequent stools, difficulty passing stools, and/or the sensation of incomplete bowel emptying.

In practice, a patient’s perception and comparison of their current bowel habit with what they consider normal will determine whether a doctor thinks the patient is constipated. It is a subjective experience. Constipation occurs in at least 50% of patients admitted to specialist palliative care centres and 80% will require laxatives. Constipation is a particular problem in those with colon or ovarian cancer. It is more prevalent in the elderly population, due to polypharmacy, immobility, and reduced hydration (Bouras and Tangalos, 2009). Constipation can arise from a number of primary and secondary causes (Table 1).

Table 1.

Contributing factors to constipation in advanced disease.

Organic factors	Functional factors
Medications (opioids, anticholinergics, anti-emetics with anticholinergic properties, chemotherapy agents, anthistamines, tricyclic antidepressants, antipsychotics, anti-parkinsonian drugs)	Diet
Metabolic (hypercalcaemia, dehydration, hypokalaemia, uraemia, hypothyroidism, diabetes mellitus)	Inactivity
Neurological disorders (autonomic dysfunction, spinal/cerebral tumours, spinal cord involvement)	Depression
Structural issues (abdominal/pelvic mass, radiation fibrosis)	Sedation
Pain (cancer pain, bone pain, anorectal pain	Environment – need for assistance

Constipation is one of the most common side effects of opioid use. Opioids cause constipation by acting on the peripheral opioid receptors in the central nervous system causing a delay in gut motility and increase in fluid absorption. Opioid effects also lead to decreased intestinal fluid secretion and reduced rectal sensitivity to distension. Clinicians may consider switching opioid agent or concurrent use of laxatives.

Constipation can cause abdominal discomfort, bloating, nausea/vomiting, urinary retention, haemorrhoids, bowel obstruction, anorexia, agitation, confusion, and even a negative impact on the patient’s well-being.

It is important for clinicians to diagnose constipation as early as possible. It is often multifactorial, which can make management difficult. Common barriers to diagnosis include lack of clinician awareness, lack of doctor–patient communication, and the absence of a universal diagnostic tool.

The Bristol Stool Chart can be used to help patients describe stool consistency. This tool can be used to help during the assessment of constipation and then at subsequent review. Patient Reported Outcome Measures are the preferred method of clinical assessment in constipation along with constipation assessment tools. No large-scale studies of such tools are available, and further studies are needed to determine which are most useful.

A full medical history should elicit possible causes of constipation (Table 1). Physical assessment should include abdominal examination, perineal inspection, and digital rectal examination, which may have benefit in advanced disease. Investigations are not routinely necessary. If suspected clinically, corrected calcium levels and thyroid function should be checked. Sudden changes in symptoms or rectal bleeding may warrant investigation, depending on stage of disease or in older patients. Plain abdominal X-rays may have a role in faecal loading and/if bowel obstruction is suspected.

Prevention and management of constipation should be step-wise. Prevention of constipation or early recognition may reduce distress to patients and care costs by reducing risk of hospitalisation. Self-care measures can be advised, such as ensuring privacy and comfort, hydration, increased mobility, positioning if bed-bound (to assist gravity). All patients on opioids should be prescribed a concomitant laxative.

The mainstay of pharmacological management of opioid-induced constipation includes the systemic use of laxatives (see Table 2 for types of laxatives), treatment with agonist or antagonistic substances (Table 3), or both. Rectal enemas or suppositories may be needed, but there is little research in this area. Enemas are generally used if oral therapy has failed. Generally, a combination of stool softener and stimulant laxative is recommended, although there is limited evidence to use one laxative over another.

Table 2.

Types of laxatives.

Type	Example
Osmotic laxatives: These retain fluid in the bowel and increase ‘bulk’ Can take 2 to 3 days to work	Lactulose, macrogols
Stimulants: These induce a bowel movement in 8 to 12 hours by increasing peristalsis Should be taken at night Avoid if any risk of bowel obstruction	Bisacodyl, senna, sodium picosulfate
Faecal softeners: These soften stool, easing passage through the bowel	Arachis oil, sodium docusate
Bulk-forming laxatives: By increasing the ‘bulk’ or weight of stools this stimulates defecation. Can take 2 to 3 days to work	Fybogel, methylcellulose

Table 3.

Agonists and antagonists used to treat constipation.

Type	Example
5-HT agonists: These stimulate the 5-HT receptors of the intestine, causing an increase in peristalsis Prokinetic Usually prescribed by specialists	Prucalopride
Opioid receptor antagonists: These work selectively by antagonising peripheral opioid receptors to relieve constipation.	Naloxone Naltrexone

Overall, assessment should be individualised, ongoing, and addressed in a timely manner.

Diarrhoea

Diarrhoea is the frequent passage of stools with urgency. This can be defined as passage of three or more unformed stools over a 24-hour period. This can be a distressing symptom affecting patient’s mood and quality of life. This symptom can be directly caused by certain cancer types, notably gastrointestinal tract tumours and neuroendocrine tumours. If not properly managed, diarrhoea and its complications can be debilitating and life-threatening. Risks of persistent or severe diarrhoea include acute dehydration, renal insufficiency, dramatic weight loss, weakness, electrolyte imbalances, and infection. Diarrhoea is a common side-effect of certain chemotherapeutic regimens; symptom prevalence ranges from 50–80%, depending on the medication.

A full clinical history should include a focused symptom history, as well as recent antibiotics, laxatives, foreign travel or about any known gastrointestinal disorders. The causes of diarrhea are listed in Box 1. Examination may include abdominal palpation, the exclusion of faecal impaction or intestinal obstruction. Persistent watery diarrhoea may indicate an infection and require further tests.

Box 1.

Causes of diarrhea.

• Drugs including laxatives, antacids, antibiotics, chemotherapy agents, non-steroidal anti-inflammatory drugs.

• Infective (Clostridium difficile)

• Radiotherapy (particularly involving the abdomen or pelvis)

• Faecal impaction with overflow diarrhoea

• Malabsorption

• Pancreatic carcinoma, pancreatic islet cell tumours, carcinoid tumours

• Concurrent disease (gastroenteritis, inflammatory bowel disease, pancreatic insufficiency, diabetes mellitus, hyperthyroidism

• Diet (bran, spicy foods, fruit, alcohol)

Management is aimed at addressing and identifying causes of diarrhoea and ensuring adequate hydration. A specialist oncological opinion is suggested if chemotherapy agents are being used or the patient has had recent radiotherapy. Oral hydration is preferred when possible. Clear fluids and simple carbohydrates are best. Glucose is pro-absorptive in the bowel; giving a glucose or electrolyte drink, such as Dioralyte® or Lucozade Sport®, may help diarrhoea, as well as replacing important losses. Lactose products such as milk should be avoided until the diarrhoea begins to resolve. The gut can be increasingly sensitive to such products when diarrhoea is caused by a virus.

Loperamide can be used at 2 mg after each loose stool (maximum 16 mg/day). Codeine phosphate can be used second-line if loperamide is ineffective, or in some cases both can be used together. If a patient is using opioid analgesia, consider overflow diarrhoea. Review of morphine preparation or use of a syringe driver may be indicated. Offering skin care and hygiene advice will help patients and their families.

Nausea and vomiting

Patients receiving end of life care often have nausea of multifactorial aetiology. Often patients are older with a reduced ability to metabolise drugs. Untreated, nausea and/or vomiting occur in 21–68% of all advanced cancer patients and in 70–80% of cancer patients receiving chemotherapy (Abemethy et al., 2010).

Nausea and vomiting can lead to potentially serious metabolic disturbances, malnutrition, and electrolyte disturbances. Common causes of nausea and vomiting in terminally ill patients include drugs (opioids, non-steroidal anti-inflammatory drugs, chemotherapy), metabolic causes (hypercalcaemia and kidney failure), gastric stasis, constipation, gastric ulceration, infection, bowel obstruction, ascites, brain involvement such as metastases, and anxiety. Opiate-induced nausea and vomiting occurs in approximately 30% of patients receiving opiates. This usually occurs on commencement of opiates or increases in dose.

An initial assessment will involve taking a history, physical examination, urine and blood tests. Patients may not want invasive tests and this decision should be taken into account.

It can be helpful to ask patients what is making their nausea or vomiting worse/better, review their medications, ask about their bowel habit, and their oral intake. Consider their psychological state and whether this is causing symptoms.

Management should include practical tips, non-medical and medical treatments.

Practical tips can include eating smaller meals more often, drinking cool fizzy drinks, avoiding strong smells such as perfumes, ensuring a calm environment and comfortable position. Complimentary therapies, such as acupuncture or aromatherapy, may help. Pressure bands from the pharmacy may help too. Patients may be able to access some of these services through a local hospice or their GP surgery. Allow patients to discuss their concerns and worries. Breathing exercises can help with anxiety, as can input from counsellors and/or clinical psychologists.

Medical treatment includes addressing reversible causes of symptoms (hypercalcaemia, renal function, hyponatraemia, constipation, symptomatic ascites, raised intracranial pressure, medication). A single anti-emetic or a combination of anti-emetics may be indicated. Adjuvant corticosteroid and/or benzodiazepine may be combined with anti-emetic drugs. It is best to avoid prescribing prokinetics (e.g. metoclopramide) and anticholinergics (e.g. cyclizine). The route of medication needs to be considered at all times and may change. The oral route may not be adequate for absorption. The parentral route may allow a reduction in oral medication, which may help to limit nausea. Buccal or sublingual medication may trigger symptoms of nausea or vomiting in some, but may help others. In persistent cases of vomiting, clinicians must consider hydration and nutritional status.

There is not a strong evidence base for the use of anti-emetics in advanced cancer patients. There are more developed guidelines for chemotherapy-induced nausea and vomiting. Metoclopramide is the best studied anti-emetic.

The main classes of anti-emetics are:

Dopamine antagonists (e.g.metoclopramide, haloperidol, domperidone, levomepromazine, other antipsychotics)

Antihistamines (e.g. cyclizine, promethazine)

Serotonin (5HT3) antagonists (e.g. ondansetron, tropisetron, granisetron)

Other agents (e.g. anticholinergics, steroids, neurokinin-1 antagonists, benzodiazepines for anticipatory nausea)

The mainstay of treatment for nausea and vomiting is pharmacological. Clinicians should have an understanding of the clinical pharmacology of anti-emetics in order to provide best care. Antihistamines and anticholinergic agents are most effective in patients with nausea resulting from vestibular and central nervous system causes. Serotonin antagonists block serotonin in the intestines and chemoreceptor trigger zone and are most effective for treating gastrointestinal irritation and postoperative nausea and vomiting. Dopamine antagonists have similar indications to those for serotonin antagonists.

Pain

Pain is experienced by 55% of patients undergoing anti-cancer treatments. Two-thirds of patients who have advanced or terminal disease experience pain. Pain control is poorer for people being cared for at home, with only 19% of respondents in the National Survey of Bereaved People in England reporting that pain was relieved ‘completely, all of the time’ at home, compared with 39% in hospital, 46% in care homes and 63% in hospices.

The World Health Organisation (WHO) developed guidelines for the pharmacological and radiotherapeutic management of cancer pain. It provides an evidence-based guide to managing pain (WHO, 2019).

The goal of cancer pain management is to alleviate pain and maintain an acceptable quality of life. Opioids are the mainstay of cancer pain relief, but adjuvant drugs also play a role. A systematic approach should involve understanding an individual patient’s pain experience.

Pain scores or scales can be used in the community or in hospice facilities to aid in assessment. Any medication started should be regularly reviewed to ensure benefit, discuss side effects, and review goals of care. Timing of medication and route should always be reviewed based on appropriateness. Pain may be incidental, and therefore, changing the structure or timing of care may be beneficial. Involvement of hospice or community nursing teams can allow for better continuity of care in patients with increasing needs. Neuropsychiatric and gastrointestinal symptoms are commonly reported with prescription of opioids and should be regularly reviewed. A patient’s renal function must also be considered especially in elderly patients or those on chemotherapeutic regimes.

It is equally as important to discuss a care plan with patients, community or hospice staff, and caregivers. Education of caregivers will also improve patient care.

Anorexia and malnutrition

The effective management of nutritional problems in palliative care can improve quality of life for patients. The goal of care should not be weight gain or reversal of anorexia, but rather improvement in a patient’s sense of well-being and any nutrition-related symptoms. The inability to eat or drink causes emotional distress to patients, as well as families and caregivers. The treatment of reversible symptoms may improve appetite. Symptoms such as constipation, pain, oral problems, nausea/vomiting, dysphagia, delirium, or depression can cause anorexia and persistent weight loss. Excessive weight loss can also lead to lethargy, reduced adherence to treatment, impaired wound healing and increased likelihood of infection.

Goals of care should be defined through good communication and the natural process of death explained. Families may often worry that their loved ones are not drinking. Studies show that thirst and dry mouth at the end of life can be effectively relieved by mouth care and sips of fluid. Hydration at the end of life still remains a controversial topic in palliative care. As disease progresses and patients become fatigued or drowsy, their appetite reduces. Physicians must consider where patients are in their journey (early or late stages) before making decisions about nutritional screening. There is a lack of evidence to support that artificial nutrition and hydration can improve outcomes in the last days of life. Artificial nutrition is not recommended, due to its invasive nature. Artificial hydration may be considered on a case-by-case basis with, for example, subcutaneous fluids.

Although there is not a universal anorexia screening tool for palliative care patients, the Malnutrition Universal Screening Tool can be used to identify adults who are at risk of malnourishment. A dietary assessment may be beneficial if a patient has lost >5% of their body weight over a 3-month period. Intervention or further assessment may be appropriate if patients are anxious about the weight loss or when improvement of nutritional status may improve treatment adherence or reduce complications. A dietetic referral may therefore be appropriate in some cases. Oral nutritional supplements (ONS) such as Complan® may be beneficial for some. If patients are in the community or not under the care of a dietician, then the appropriateness of ONS should be regularly reviewed.

Dysphagia

Difficulty in swallowing is a frightening symptom. Swallowing problems can be due to a primary malignancy, metastases, or part of the natural process of dying. Dysphagia is a poor prognostic sign and can cause complications such as aspiration, anxiety (for the patient or caregiver) and anorexia. Swallowing disorders often occur in patients with malignancy of the upper gastrointestinal tract or brain and progressive neurologic disorders including dementia. The management of dysphagia is challenging, and there is a risk of aspiration. Changing food consistency may help. Assessment by a speech and language therapist can play a critical role in assessment of swallowing potential and the determination of safe feeding methods. In cases of obstruction causing dysphagia, surgical options such as stents may be appropriate. This is specialist led and considered on an individual basis. Goals of care in dysphagia should include maintenance of adequate nutrition, optimising swallowing function, and minimising the risk of aspiration.

Caring for the ‘whole’ patient

A holistic palliative care approach includes all aspects of a patient’s physical, emotional, and spiritual dimensions of an illness and care of the family. The recognition of a patient as a whole will help health professionals understand the patient’s views on medical decisions such as withholding treatments or what they consider a priority in their care.

The Gold Standards Framework (GSF) is a model developed in 2000 by Dr. Keri Thomas (a GP with a special interest in palliative care) with support from other organisations such as MacMillan Cancer Relief. It is a model of good practice striving to provide a higher and more consistent standard of care to patients in the final months of life. The framework strives for continuity in care with improved communication between organisation and staff. The GSF is endorsed by NICE. The three key processes of the GSF are identifying, assessing, and planning (Box 2).

Box 2.

The three key processes of the GSF.

• Identifies patients in need of palliative/supportive care towards the end of life

• Assesses their needs, symptoms, preferences

• Plans care, particularly looking at problems that may arise

Through these three processes the goal is to ensure adequate symptom control, empower patients to live or die well in their preferred place of care, improving staff confidence and skills, and advanced planning with patients and families. Supporting carers and families is also essential in providing high-quality palliative care. Advanced care planning and early communication between professionals and patients/families allows for anticipation of potential problems and personal wishes.

Conclusion

Palliative care can last a few days, a few months or more than a year. Therefore patients’ needs can vary greatly. Gastrointestinal symptoms are highly prevalent at the end of life. If gastrointestinal symptoms are poorly controlled, they can add a to a patient’s suffering. Possible reversible and medication-related aetiologies should always be considered. Palliative care should focus on assessment and reassessment of patients, their symptoms and treatment. Gastrointestinal symptoms can be distressing and difficult to manage for carers.

There are an estimated 92 000 people a year in England, 6100 people a year in Wales, 3000 people a year in Northern Ireland and 10 600 people a year in Scotland who would benefit from palliative care but are not currently receiving it. People cared for in hospital report a reduced likelihood of high-quality palliative care. Local policies now encourage community-based palliative care teams supporting patients with complex needs. GPs are expected to have a central role in management with often nurses in the community taking more active roles. Palliative care physicians also play a role in more specialist end of life and palliative care.

As GPs we play an optimal role in supporting patients who often wish to die at home. Primary care clinicians should aim to be involved in coordinating care, supporting families and providing continuity.

KEY POINTS

Gastrointestinal symptoms in terminally ill patients are highly prevalent and cause a great deal of suffering

Constipation, bowel obstruction, anorexia, and nausea and vomiting are the four common symptoms at the end of life

Physicians can help by providing an organised treatment approach with regular, individualised assessment

Communication, compassion, and respect for autonomy are vital in creating strategic care plans with patients at the end of life

The GSF is a model of good practice striving to provide a higher and more consistent standard of care for patients in the final months of life

GPs have a key role in supporting patients who choose to die at home by coordinating care, supporting families and providing continuity of care

Footnotes

ORCID iD

Dr Monica Kumar

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