Palliative care addresses the physical, psychological, social, and spiritual needs of someone with advanced, progressive, and fatal disease. Good symptom control requires meticulous assessment, effective two-way communication, and the wise use of drugs, supported by other therapeutic interventions.
Common symptoms are (1) pain—one of the most feared symptoms in patients with advanced malignant disease; managed with disease modifying treatments, nondrug measures (e.g. heat pads), and/or analgesics; (2) nausea and/or vomiting—after exclusion/treatment of reversible causes, management is with antiemetics chosen to target the receptors likely to be involved in the particular case and delivered by an appropriate route (oral or nonoral); (3) breathlessness—a disabling symptom in many patients with chronic and progressive illnesses; management requires dealing with reversible causes (e.g. anaemia, chest infection), nondrug measures (e.g. relaxation techniques, fans), and/or drugs (e.g. strong opioids); (4) constipation—an under-recognized problem which must be handled proactively with rectal measures and/or oral laxatives; (5) depression—which is common but often not perceived; diagnosis and early treatment with antidepressants and psychological support are usually effective; (6) anorexia and fatigue—these are the ‘Cinderellas’ of symptom control, less amenable to drug therapy but requiring the management of the distress and frustration of the patient and family.
Medical emergencies are relatively uncommon in palliative care, but prompt diagnosis and (when appropriate) intervention are essential. However, it is vital to diagnose dying to avoid unrealistic attempts to cure or prolong life in hopeless situations. Once death is seen to be inevitable and imminent, the focus of care should change from sustaining life at all costs to supporting the natural process of dying.
Introduction and historical perspective
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychological, and spiritual.
(World Health Organization, http://www.who.int)
Palliative care is relevant to almost every aspect of clinical practice. Patients with advanced cancer as well as other progressive and ultimately fatal diseases face similar challenges. Their disease is incurable, progressive, and, put simply, physically and emotionally life-shattering. Those around them are also deeply affected. Even in developed countries, where patients may be buffered by relative affluence and privately or publicly funded comprehensive health care systems, they are not immune to suffering. Elsewhere, effective palliative care may be compromised by lack of access to simple effective drugs, inadequate training for professionals and systems which do not, or cannot, prioritize palliative care.
The modern hospice movement was established by Dame Cecily Saunders in the mid 20th century. However, the art of caring for the dying had been established in Our Lady’s Hospice, Dublin and St Joseph’s Hospice in the east end of London even before the First World War. Terms used to describe this care started as ‘terminal’ or ‘hospice’ care but more recently, the term ‘palliative’ care has been used to emphasize its relevance throughout severe illness—not just at the dying stage (see fig. 1 below).
Fig. 1 Old and contemporary models of terminal and palliative care
So who provides palliative care?
Although families, friends, and neighbours are almost always involved, this chapter focuses more on the medical management of these patients. Clearly, specialists in the underlying disease, e.g. oncologists, neurologists, physicians, or surgeons, are essential. In resource-rich countries, accredited palliative medicine physicians usually work alongside clinical nurse specialists, physiotherapists, occupational therapists, social workers, chaplains, and psychologists. In resource-poor countries, however, palliative care may be carried out by a single doctor and a single nurse or volunteer, often working in very difficult circumstances. Whatever the size of the team, palliative care must be delivered where the patient is—in hospital or at home.
This article is intended to guide the general physician in three aspects of palliative care:
- symptom management
- identification of emergencies
- end-of-life (terminal) care
Approach to symptom management
Some tips are listed in Bullet list 1
Effective symptom management requires attention to the emotional and social impact of the symptoms as well as the physical issues. The prevalence of symptoms in patients suffering from cancer, as well as those who have progressive nonmalignant disease, is set out in Table 1.
Common symptoms discussed here include pain, nausea and vomiting, and breathlessness.
Pain is one of the most feared symptoms in patients diagnosed with advanced malignant disease. Careful history-taking and focused physical examination are fundamental to effective pain management.
Pain may be either (1) nociceptive—caused by physical and/or chemical stimulation of free nerve endings in soft tissue, viscera, bone, etc., or (2) neuropathic—caused by compression, infiltration, or injury to the peripheral nerve or central nervous system, commonly referred to as ‘nerve pain’. The ways in which different pains are commonly described are set out in Table 2.
Each pain should be evaluated and documented separately, because different underlying mechanisms require different therapies. Questions to ask include:
- Pain: site, onset, severity, radiation, exacerbating and relieving factors, temporal factors, and impact on patient’s daily living, sleep, and mood
- Analgesic history: effectiveness and side effects of previous and current analgesic drugs, including precisely how much and how frequently they are being taken—often different from what is prescribed
Pain in advanced disease may be continuous or acute-on-chronic. The management of continuous pain is described in the following paragraphs. The management of acute-on-chronic pain, though based on the same principles, require a particularly careful history to determine whether the pain is:
- due to an insufficient dose of the current analgesia, i.e. pain coming on shortly before the next dose is due (end-of-dose failure)
- triggered by particular movement or activity (movement-related pain)
- a spontaneous exacerbation against a background of chronic pain, occurring without apparent trigger (incident pain)
Bullet list 1 Tips on symptom management
- Keep an open mind; symptoms may be caused by the disease, treatment, debility, or concurrent minor or major illness.
- Targeted examinations and investigations, particularly in weak and debilitated patients, are good and effective practice.
- Interventions are more likely to work if the choice of treatment is based on careful analysis of the mechanism of the symptoms.
- Consider whether there are reversible aspects of the problem.
- First, listen carefully; the best cues and clues come from the patient.
- Patients vary in the level and pace at which they desire information.
- Breaking bad news:
- Most doctors worry about doing badly and respond either by blurting out the whole truth in one shot or procrastinating and going round in circles; neither extreme works.
- The doctor who listens carefully to the patient, offers a warning shot, openly tackles questions, and remains sensitive to any hint that the patient has had enough is more likely to be successful.
- Go on a communication skills course if you feel you need to build your skills in this area.
Decision-making and management
- Listen carefully to the patient, relevant family members and other team members.
- Decision-making involves:
- Judgements based on the patient’s best interest
- Balancing potential benefit with possible harm and burden of carrying out or withholding intervention
- Negotiation and clear explanations
- Management plans include: Correcting what is realistically reversible Targeting the symptom with drug and non-drug approaches
- Drug prescribing:
- Start with safe but sensible doses.
- Oral drugs are easier to manage in all settings, but nonoral routes may be required when the patient is unable to swallow or has nausea, vomiting, or severe diarrhoea.
- Some drugs, e.g. analgesia, require upward titration to achieve maximal symptom control with minimal side effects—warn the patient that it may take several steps to achieve this, otherwise they may get discouraged.
- Professional judgement needs to go beyond protocols and guidelines; decisions need to be about what is best for this patient in this situation at this time.
- Keep an open mind. It is always easier to spot what one is looking for—do not be blinded by your own assumptions.
- Check out with the patient—the apparent success of an intervention may not be mirrored by the patient’s experience.