Abstract
The last days of life are challenging for both patients and their loved ones. Recognition of the terminal stage of life can allow time for care planning. An early discussion can provide an opportunity for questions. It can be reassuring for patients and families to know that care needs are being carefully considered and met at this important time. The management of physiological changes, psychological distress, and spiritual needs at the end of life can improve quality of care and the quality of death; a ‘good death’ can help the bereavement and wellbeing of those left behind.
Clinical case scenario
Mary Jones is the wife of Richard, a 74-year-old patient with colorectal cancer and hepatic metastases. He has been experiencing abdominal pain. Your colleague started morphine sulphate (modified-release), titrated up to 30 mg BD after two home visits. From the previous consultation you note that Mary is Richard’s sole carer. No palliative care services have so far been involved. Mary reports that Richard is still in pain, has not opened his bowels and has required six doses of Oramorph (immediate-release oral morphine) in the last 24 hours. She is struggling to cope.
What is a ‘good death’ and how to recognise it
A ‘good death’ can be difficult to define. A doctor, patient, and caregiver may have different views. The Institute of Medicine defines a good death as ‘one that is free from avoidable distress and suffering for patients, families and caregivers in general accordance with patients' and families' wishes’ (Gustafson, 2007).
An article from some years ago, defines six domains for measuring and modifying a good death. These include physical symptoms; psychological and cognitive symptoms; economic and caregiving needs; social relationships and support; spiritual and existential beliefs; hopes and expectations (Emanuel and Emanuel, 1998).
We cannot always be certain that someone is dying; however, physicians will develop their own clinical judgement from experience. Lack of recognition can lead to greater patient suffering if inappropriate or invasive investigations and treatments are not reviewed. The need for a focus on symptom control should be acknowledged. Recognising the near end of life whether it will occur in months, weeks, or days allows for important discussions.
If a rapid change in clinical condition occurs, reversible causes should be considered. An increasing rate of deterioration in clinical condition may signify the end of life. If it is over days or hours, the time left often follows a similar timeframe and trajectory. Poor prognostic factors include progressive weight loss, dyspnea, dysphagia (unable to swallow medication), cognitive impairment, becoming bed bound, loss of interest in food, or extreme fatigue.
A holistic approach includes addressing the physical, as well as emotional, consequences of terminal illness. It is important to ask patients what they would like to know. Based on their wishes, explain what is happening, what is likely to happen, the drugs being used, the support available, and how the family can help with care.
Local services.
Lack of practical support is one of the commonest reasons for admission to hospital or hospice at the end of life. Therefore, consideration should be given to extra help, for eample, Marie Curie nurses to give carers rest and support.
Feelings of anxiety and depression are very common as individuals and their families deal with an incurable illness. An assessment of risk factors for difficult bereavement allows care to be planned for the family after the patient’s death. Professional carers may also need support, particularly if the last 48 hours were difficult, and this requires an open line of communication.
Discussing death and dying
Effective communication improves a patient’s quality of life and can make patients and families feel more involved. One of the most challenging aspects of end of life care is managing difficult conversations. Having such conversations can help lessen the stigma of talking about death, ensure a patient’s final wishes are honoured and allow family members to begin the grieving process. A mutual understanding of a patient’s terminal illness may reduce any futile medical treatments and lead to lower levels of suffering for the patient and family.
Some basic principles in the often difficult conversations include active listening, open questions and the use of silence. Baile and Buchman (2000) created a six-step framework for delivering bad news (SPIKES). The components of this framework convey the importance of planning for the delivery of bad news and paying attention to a patient’s reaction at each stage. When delivering information, it is vital to check their understanding of their situation and any preference for additional information, including on prognosis. Clinicians often underestimate or overestimate a patient or family’s knowledge of end of life issues or prognosis, particularly if they have not carefully assessed understanding.
The information given should address specific questions asked by patients and their families. This allows the healthcare professional to start a conversation tailored to a patient’s needs and concerns. Responding to patients and families with respect encourages further open dialogue. There may be difficult questions around anxiety and fear of dying, feelings of guilt, or advance care plans. Approaching all discussions empathetically and with judgement will encourage further dialogue. It is only through good communication that effective advance care decisions can be made.
End of life conversations can be emotionally charged. Healthcare practitioners should remain mindful of their own wellbeing and create a supportive environment for their team.
Many patients and their carers find that they do not get the opportunity to discuss end of life wishes. Families and loved ones may struggle to know what to do when the patient is unable to communicate. Advance care planning is voluntary. It starts from proactive conversations about a patient’s wishes as they approach the end of life. Clinicians may also find these conversations challenging and inadvertently avoid having them or have very inadequate conversations. See Fig. 1.
Advance care planning.
Patients can use an Advance Care Plan to document and review their wishes for end of life care, preferred place of death, and Advanced Decisions to Refuse Treatment. Do Not Resuscitate orders refer to advanced decisions made by medical staff not to attempt futile cardiopulmonary resuscitation (CPR). Patients can also refuse CPR if they wish. Resuscitation should be discussed as early as possible and decisions documented in the notes. Copies of the resuscitation order should be left with the patient, general practitioner, palliative care/secondary care teams involved and the out-of-hours services.
In addition, patients can complete a lasting power of attorney (LPA). A person can be legally appointed to make decisions on behalf of the patient when and if they lack capacity. There are two types of LPA, property and financial affairs and health and welfare. An LPA can be registered by completion of a document with the Office of the Public Guardian. These documents can also be used by health or social care workers to help make decisions in the best interests of patients.
Each local region or trust will usually have their own documents for advance care planning. Patients thinking about their wishes or having discussions with their families can be signposted to national resources. Compassion in Dying offers free forms to document advance decisions that are considered legally binding. The British Medical Association and Resuscitation Council UK offer guidance relating to CPR. The Royal Mail offers LPA forms through post offices. MacMillan Cancer Support offers a booklet ‘Your Life Your Choices’ to aid advance care discussions.
Symptom management
The goal of symptom management is to allow patients to live as actively and comfortably as possible until death.
Anticipatory subcutaneous injectable medications should be available in the patient’s home for administration by district nurses if the need arises. If a patient is thought to be in the last few days of life, this should be well documented in the primary care notes. This can be very helpful for out-of-hour healthcare providers should they become involved in care.
It is essential to discuss the role of investigations with patients. At the end of life, investigations should only be requested if the results are likely to change management or prognosis. Requesting investigations should be in keeping with goals of care, in order to avoid unnecessary suffering to patients.
Pain control is central to palliative care, as it is often multifactorial, experienced differently by all, and requires a multi-disciplinary approach. When assessing pain at the end of life it is important to keep a few principles in mind. These include recognition of the concept of ‘total pain’. Total pain is a concept developed by Dame Cicely Saunders during the modern hospice movement. This idea recognises that pain is physical, psychological, spiritual, and social. An understanding of the disease, as well as a thorough pain history/pain scale ratings, can help you determine the best management options. Non-pharmacological options of pain management should always be considered. Pain management should be reviewed regularly and changes made when there is a persistent or escalating pain. The World Health Organisation’s analgesic and cancer pain ladder can be used as a framework.
Consider alternative sources of pain that are not directly related to the palliative condition. Non-cancer pain, such as arthritis, may also affect patients. Pressure sore-related pain can be alleviated with dressings, position changes, local anesthetic gel, change in mattress, and appropriate nursing support. Oral discomfort may be due to dryness, ulcers, or oral thrush. Bone pain responds well to non-steroidal anti-inflammatories. Other adjuvant analgesics include tricyclic antidepressants (amitryptiline), antiepileptics (gabapentin or pregabalin) and serotonin-norepinephrine reuptake inhibitors such as Duloxetine. These can be used individually or in combination based on individual assessment.
Dyspnea is a common and distressing symptom. It can arise as an underlying pathology or be related to anxiety and fear. Managing breathlessness is often supportive after reversible causes have been ruled out. Simple techniques such as fans, repositioning patients, opening windows, breathing exercises, and reassurance should be offered. Routine oxygen is not advised unless the patient is known to have symptomatic hypoxia. Nebulised saline sometimes provides relief of thick secretions or dry cough. Suctioning is not often recommended, but may be considered when noisy breathing is seen in visibly distressed patients. If secretions are significant, hyoscine hydrobromide (0.4–0.6 mg) via subcutaneous bolus or up to 2.4 mg/24 hours via syringe driver can be used. Glycoporonium (0.6–1.2 mg) can be used and is less sedating than hyoscine hydrobromide. It is important to refer to local guidelines, as some trusts advocate hyoscine butylbromide, as there are fewer cognitive side effects.
Opioids and benzodiazepines are the most effective pharmacological treatments for managing breathlessness. They can be commenced at low doses individually or in combination based on an individual assessment. If a patient is on regular morphine, a higher breakthrough dose may be required to manage acute breathlessness.
Cognitive impairment may worsen in the last days of life. It may manifest as confusion or agitation. Often overlooked is the patient’s environment, which may be causing distress. A change in lighting, reduction in noise, or privacy may help. Agitation may also be due to physical or emotional pain, cerebral metastases, infection, anxiety, hypoxia, or metabolic causes (uraemia, hypercalcaemia, changes in sodium or glucose). Opioids can cause delirium. Agitation may be helped by diazepam or midazolam. However, it is important to recognise that with escalating doses of benzodiazepines alone there is a risk of potential paradoxical increase in agitation. Opioids increase the risk of delirium, especially in the elderly. It can be managed by regular review of opioid doses or the addition of medications such as haloperidol or levomepromazine if underlying causes are not found.
When nausea and vomiting occur, assess for likely causes. It is important to ensure adequate anti-emetic medication is available. Choice of medication should be tailored to the underlying cause. Consider medications such as opioids, recent chemo or radiotherapy, raised intracranial pressure, bowel obstruction, or biochemical causes such as hypercalcaemia.
Medication options include haloperidol, metoclopramide, cyclizine, or levomepromazine. Antiemetics started for bowel obstruction should be continued. Often if multiple factors are involved, more than one antiemetic may be needed. If no clinical improvement occurs after 24 hours, another antiemetic should be considered.
Constipation commonly occurs at the end of life. Causes include medication side ffects, dehydration, reduced mobility, hypercalcaemia, neurological causes, or obstruction. Prevention is the best management of constipation. If oral intake is possible, encourage intake of water and fruit juice. All patients who are prescribed opioids should concurrently be prescribed a stimulant laxative. For example, in the clinical case scenario above, it may be appropriate to initiate senna or sodium docusate. Glycerol suppositories may be appropriate in certain situations to relieve impaction.
Physical examination
Clinical assessment by a GP is essential. Any unnecessary examination should be avoided. First, gather as much information as possible from nursing staff, carers, and/or family. They spend far more time with a patient and are often able to pick up on non-verbal cues. Doctors also need to be able to recognise non-verbal cues of pain or agitation, observe breathing pattern (which may help guide whether a patient may be in the last few hours of life) and look for signs such as cold peripheries and mottling. Examine sites of pain or any lines for signs of infection. Examination of the mouth may be relevant and treatment for oral thrush may be appropriate on an individual basis. Bowel and bladder function should be reviewed. Assess for pressure sores, which is another reversible cause of distress. Non-verbal cues such as agitation, restlessness, insomnia, hallucinations should always be considered when prescribing or making changes to management.
Anticipatory prescribing and syringe drivers
If a patient is unable to swallow oral medications or it is becoming a burden due to deterioration of the illness, a parenteral route should be considered early. In patients already taking long-acting opioids or needing more than two or three as required injectable medication in 24 hours, a syringe driver should be considered.
If a new medication is added to a syringe driver, it should be started at the lowest effective dose. Titration should be guided by regular clinical assessment of symptoms every 24 hours.
Analgesics, antiemetics, sedatives, and anticonvulsants often remain essential, and can be administered through a subcutaneous route. These medications should be regularly reviewed by discussion with carers, nursing staff, or family. Decisions should be made based on an individual patient’s symptoms and side-effect burden.
If a patient is not on opioids you may start with MST (modified-release morphine) 10–15 mg every 12 hours or Oramorph (immediate-release morphine) 5 mg every 4 hours (except in the frail, elderly, or those with renal impairment). If a patient is already receiving a regular weak opioid this should be taken into account when prescribing stronger opioids. For information regarding opioid conversion, refer to local guidelines, the British National Formulary, or palliative care formularies.
There are certain important principles to keep in mind. The breakthrough dose is one-sixth of the total daily dose. Titration of opioids should be in increments. A general rule of thumb can be to increase by a third of the current dose. This can vary based on use of breakthrough analgesia in the last 24 hours. Diamorphine is preferred, due to its solubility and its ability to be delivered via a syringe driver. There have been availability issues with diamorphine in some regions, in which case morphine would be used. When morphine cannot be used, alternative strong opioids in palliative care include oxycodone (oral or subcutaneous), buprenorphine, or fentanyl (both transdermal). Fentanyl should not be started if death is imminent as it is difficult to titrate.
Antihypertensives, antidepressants, oral hypoglycaemics and corticosteroids are often not needed in the last days of life. It is important not to suddenly stop dexamethasone. It can be converted to once or twice daily subcutaneous injections.
Anticipation of emergencies in palliative care
Common emergencies in the last 48hours include seizure, haemorrhage, or stridor, with most emergencies being irreversible in this setting. Early discussion with families and patients can help to prepare for a possible crisis. Drugs should be made available for immediate administration by trained clinical staff or family member who has been shown how to administer.
Useful drugs are injections of midazolam (starting at 5–10 mg dependent on previous exposure) and diamorphine (start at 5–10 mg, or a sixth of the total daily dose over the last 24 hours). Brain tumours make patients more susceptible to seizures, especially if they are no longer on corticosteroids. Midazolam in a syringe driver can be started. Administration of rectal diazepam or buccal midazolam may be required.
Haemorrhage is uncommon, but is distressing for patients and families. Haemoptysis, haematemesis and erosion of a major artery such as the carotid may occur. Dark-coloured towels may lead to less visual distress. An injection of midazolam (5–10 mg) should be prescribed prophylactically to relieve anxiety and volume of bleeding.
Artificial nutrition and hydration
Carers and patients often have questions about hydration at the end of life. Will their loved one feel thirsty? Will it hasten the dying process? It is important to explain and reassure that often in the last days or hours of life the dying person will not experience thirst or hunger in the same way. Artificial hydration does not prolong life and can often increase suffering. Consider whether the patient has documented any wishes in an advance directive in relation to food and fluids. Communication is vital with families to understand their fears around nourishment and thirst. It is important to discuss the likely burdens of artificial hydration at the end of life and acknowledge potential concerns from patients and carers. Explain that as the body slows down it is does not require as much food or fluid. It can also help to ask if they knew what their loved one would have wanted. This can help them feel ‘at peace’ with certain decisions.
Mouth care is a safer alternative. This includes dampening of the lips and tongue. Alternatively offering softer foods when still possible such as apple sauce, ice cream, and pudding can offer comfort. Moisturizing mouth sprays and washes are available.
Artificial nutrition and hydration decisions should be made by weighing the possible advantages versus risks. The potential problems that may arise include aspiration, diarrhoea (nasogastric tube feeding), pressure sores or skin breakdown (central or subcutaneous fluid administration) and complications of fluid overload. If artificial hydration or nutrition is implemented, then the need for continuation or discontinuation should be reviewed regularly.
Conclusion
End of life care in the United Kingdom has been ranked amongst the best in the world. However, we must recognise that patients still die with uncontrolled symptoms in an undignified manner. Diagnosing dying is an important clinic skill. Healthcare workers must feel empowered to provide palliative care, particularly GPs seeing a large elderly population with an emphasis on community care. Talking about death can be difficult for physicians and patients alike. However, many patients and relatives are grateful if the topic is broached by a healthcare professional. Early recognition of the dying process allows time for advance care planning and in the last days of life it helps families, carers, and healthcare professionals to honour patients’ last wishes.
KEY POINTS
Recognition of the terminal stage of life can allow sufficient time for care planning The goal of symptom management is to allow patients to live as actively and comfortably as possible until death When a patient is less able to swallow, a parenteral route should be considered early Common emergencies in the last 48 hours include seizure, haemorrhage, or stridor Artificial hydration does not prolong life and can often increase suffering Aims at the end of life include maintaining dignity, managing symptoms affecting quality of life and minimising harm from unnecessary interventions
ORCID iD
Monica Kumar https://orcid.org/0000-0002-1905-5955