Chapter 11: Palliative care

Palliative care is comprehensive, continuing, multidisciplinary patient care that involves the patients and their carers, consultants, domiciliary nurses, social workers, clergy and other health professionals who are able to contribute to optimal team care.

The fundamental principles of palliative care are:²

• good communication

• management planning

• symptom control

• emotional, social and spiritual support

• medical counselling and education

• patient involvement in decision making

• support for carers

Palliative care applies not only to incurable malignant disease but also to several other diseases, such as end-stage organ failure (heart failure, kidney failure, respiratory failure and hepatic failure) and degenerative neuromuscular diseases. Thirty per cent of the population will die from cancer.

The GP is the ideal person to manage palliative care for a variety of reasons—availability, knowledge of the patient and family, and the relevant psychosocial influences. A key feature is the ability to provide the patient with independence and dignity by managing palliative care at home. Someone has to take the responsibility for leadership of the team and the most appropriate professional is a trusted family doctor.

Most patients and their families require answers to the following six questions.³

• What is wrong?

• What can medical science offer?

• Will I suffer?

• Will you look after me?

• How long will I live?

• Can I be looked after at home?

Caring honesty is the best policy when discussing the answers to these questions with the patient and family. Never lie to a patient and always avoid thoughtless candour.

Studies have indicated that the most common complaints of patients are boredom and fear of the unknown. This highlights the importance for the attending doctor of the following points.

• Give emotional support.

• Listen and be receptive to unexpressed ‘messages’.

• Treat the sufferer normally, openly, enthusiastically and confidently.

• Show empathy and compassion.

• Employ good communication skills.

• Give honest answers without labouring the point or giving false hope.

• Provide opportunities for questions and clarification.

• Show an understanding of the patient's needs and culture.

• Adopt a whole-person approach: attend to physical, psychosocial and spiritual needs.

• Anticipate and be prepared for likely problems.

These next special points are worth emphasising.

• The patient needs a feeling of security.

• Provide reassurance that the patient will not suffer unnecessarily.

• Be prepared to take the initiative and call in others who could help (e.g. clergy, cancer support group, massage therapists).

• Patients must not be made to feel isolated or be victims of the so-called ‘conspiracy of silence’ in which families collude with doctors to withhold information from the patient.

• The worst feeling a dying patient can sense is one of rejection and discomfort on the part of the doctor.

• Always be prepared to refer to an oncologist or appropriate therapist for another opinion about further management. The family and patient appreciate the feeling that every possible avenue is being explored.

Note: Always establish what the patient knows and wants to know.

This framework, which provides an optimal model for palliative care by the primary care team, focuses on seven key tasks:

1. optimal quality of care

2. advanced planning (including out of hours)

3. teamwork

4. symptom control

5. patient support

6. carer support

7. staff support

The strategy has been shown to increase the number of patients dying in their preferred place with improved quality of care.⁴

Common symptoms

• boredom (the commonest symptom)

• loneliness/isolation

• fear/anxiety

• pain

  • – physical

  • – emotional

  • – spiritual

  • – social

• anorexia

• nausea and vomiting

• constipation

The grief reaction

This follows five stages, as identified by Kübler-Ross:⁵

1. denial and isolation

2. anger

3. bargaining

4. depression

5. acceptance

This model provides a useful guideline in understanding the stages a patient and family will be experiencing.

The principles of symptom management are summarised in TABLE 11.1. The goals of treatment according to the different stages of cancer are presented in FIGURE 11.1.

Pain control in cancer

Pain is the commonest, most feared, but generally the most treatable symptom in advanced cancer. Achieving pain relief is one of the most important functions of palliative care and patients need reassurance that they can expect such relief. The principles of relief of cancer pain are:¹

1. Treat the cancer.

2. Raise the pain threshold:

   • provide appropriate explanation

   • allow the patient to ventilate feelings and concepts

   • give good psychosocial support

   • use antidepressants or hypnotics.

3. Add analgesics according to level of pain, for example, opioids (if necessary).

4. Use specific drugs for specific pain—not all pain responds to analgesics (refer TABLE 11.2).

5. Set realistic goals.

6. Organise supervision of pain control.

Note: The right drug, in the right dose, given at the right time relieves 80–90% of the pain.¹ Reports of the undertreatment of cancer pain persist.

Use of analgesics⁷

The World Health Organization (WHO) analgesic ladder is an appropriate guide for the management of cancer pain (see FIG. 11.2).

These should be given by the clock and administered according to the three-step method.

Step 1: Mild pain

Start with basic non-opioid analgesics:

Step 2: Moderate pain

Use low dose or weak opioids (according to age and condition) or in combination with non-opioid analgesics (consider NSAIDs):

Step 3: Severe pain

Maintain non-opioid analgesics. Larger doses of opioids should be used and morphine is the drug of choice:

• Give dosage according to individual needs (morphine CR/SR comes in 5, 10, 15, 20, 30, 50, 60, 90, 100, 120, 200 mg tablets or capsules).

• The proper dosage is that which is sufficient to alleviate pain.

• The usual starting dose is 20–30 mg bd.

• Give usual morphine 10 mg with first dose of morphine CR/SR and then as necessary for ‘rescue dosing’.

• Gauge the probable dose of the long-acting morphine from the standard dosage.

• To convert to morphine CR/SR, calculate the daily oral dose of regular morphine and divide by 2 to get the 12 hourly dose.

• Do not crush or chew the tablets or capsules.

• Review doses after 1–2 days.

Guidelines

• Ensure that pain is likely to be opioid-sensitive.

• Use as few drugs as possible.

• Give morphine orally (e.g. Ordine) (if possible) either by mixture (preferred) or tablets (e.g. Sevredol, Anamorph).

• Starting doses are usually in the range of 5–20 mg (average 10 mg).

• If analgesia is inadequate, the next dose should be increased by 50% until pain control is achieved.

• Give it regularly, usually 4 hourly, before the return of the pain (see FIG. 11.3).

  FIGURE 11.3

  Appropriate schedule of analgesia to achieve optimal pain control⁸

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• Many patients find a mixture easier to swallow than tablets (e.g. 10 mg/10 mL solution).

• Constipation is a problem, so treat prophylactically with regular laxatives and carefully monitor bowel function.

• Consider oxycodone/naloxone (Targin) CR tablets for pain.

• Order a ‘rescue dose’ (usually 5–10 mg) for breakthrough pain or anticipated pain (e.g. going to toilet).

• Order antiemetics (e.g. haloperidol prn at first; usually can discontinue in 1–2 weeks as tolerance develops).

• Reassure the patient and family about the safety and efficacy of morphine (see TABLE 11.3). (Beware of opiophobia.)

• Using morphine as a mixture with other substances (e.g. Brompton's cocktail) has no particular advantage.

• Pethidine is not recommended (short half-life, toxic metabolites) and codeine and IM morphine (initially) should be avoided.

• Other opioids such as oxycodone, tapentadol and fentanyl are sometimes used instead of morphine and are an alternative to SC opioids but use with discretion (see CHAPTER 12).

• Fentanyl is a potent synthetic opioid which is available as a transdermal system. Effective and good for compliance. It is the least constipating opioid and can be used in kidney failure.

• Tapentadol is a new moderately strong opioid analgesic given orally, usually as a sustained release preparation. It is best avoided in severe kidney and liver impairment.

• Hydromorphone is a potent analgesic available as oral liquid, tablets and injection, and is now widely used in palliative care. It facilitates oral dosing when a high opioid dose is required and because of its short half-life (2–3 h) may reduce the incidence of side effects in the frail and elderly but like oxycodone may need to be given 4 hourly if used alone.

• Haloperidol is a first class adjuvant for morphine.

Opioid rotation

This practice involves changing from one strong opioid to another in patients with dose-limiting side effects. Different opioids have differences in opioid receptor binding.

Morphine can be alternated with oxycodone, hydromorphone, methadone, fentanyl, tapentadol and others. Transdermal patches of fentanyl are an alternative to parenteral morphine.

Parenteral morphine

This is generally given subcutaneously (not IV or IM). Indications are:⁶

1. unable to swallow (e.g. severe oral mucositis; dysphagia; oesophageal obstruction)

2. bowel obstruction

3. severe nausea and vomiting

4. at high oral dose (i.e. above 100–200 mg dose) there appears to be no additional benefit from further dose increments

Adjuvant treatment

Refer to TABLE 11.2. In all three steps of pain control consider the use of adjuvant ‘analgesics’; while not strictly speaking analgesics, they contribute to pain relief. Examples are corticosteroids, antidepressants, psychotropic agents and anticonvulsants.

Pain control

Bone pain:

• aspirin, paracetamol, NSAIDs are helpful co-analgesics, consider denusomab

Neuropathic pain (direct involvement of nerves):

• antidepressants (e.g. amitriptyline)

• anticonvulsants (e.g. carbamazepine, gabapentin)

• ketamine, an anaesthetic agent, is valuable for difficult pain but requires expertise in administration

Neurological pressure:

• corticosteroids for spinal cord compression, oedema and raised intracranial pressure e.g. dexamethasone 4–16 mg (o, sc or im) daily in morning

  or

  prednisolone 25–100 mg (o) daily

Continuous subcutaneous infusion of morphine

When the oral and/or rectal routes are not possible or are ineffective, a subcutaneous infusion with a syringe driver (pump) can be used.

It is also useful for symptom control when there is a need for a combination of drugs (e.g. for pain, nausea and agitation). It may avoid bolus peak effects (sedation, nausea or vomiting) or trough effects (breakthrough pain) with intermittent parenteral morphine injections.

Practical aspects

• Access to the subcutaneous space is via a 21 gauge butterfly needle, which is replaced regularly (1, 2, 3 or 4 days).

• Most regions are suitable. The more convenient are the abdomen, the anterior thigh, and the anterior upper arm (usually the anterior abdominal wall is used).

• The infusion can be managed at home.

• About one-half to two-thirds of the 24 hour oral morphine requirement is placed in the syringe.

• The syringe is placed into the pump driver, which is set for 24 hour delivery.

• Areas of oedema are not suitable.

Spinal morphine

Epidural or intrathecal morphine is sometimes indicated for pain below the head and neck, where oral or parenteral opioids have been ineffective. It is necessary to insert an epidural or intrathecal catheter (anaesthetist or neurosurgeon).⁷

Common symptoms can be controlled as follows:¹

Anorexia

Constipation^6,7,9

If opioids need to be maintained, the laxatives need to be peristaltic stimulants, not bulk-forming agents. Treat as for any patient in the GP setting. Aim for firm faeces with bowels open about every third day.

Rectal suppositories, microenemas or enemas may be required (e.g. Microlax).

Shaw's (or PCU) cocktail is useful for severe constipation. With a small quantity of water melt one tablespoon of Senokot granules in a microwave oven. Add 20 mL Agarol and constitute to 100 ml with cold or warm milk or ice-cream.

Tip: Tilt the pelvis for defecation by sitting upright with books under feet for elevation.

Noisy breathing and secretions^7,11

Conservative: repositioning to one side, reduced parenteral fluids and nasogastric suction.

For conscious patient:

• hyoscine butylbromide (Buscopan) 20 mg SC, 4 hourly or 60–80 mg daily by SC infusion

  or

• glycopyrrolate 0.2 mg SC as a single dose followed by 0.6–1.2 mg/24 hrs by continuous SC infusion

  For unconscious patient, as above, also consider:

• hyoscine hydrobromide 0.4 mg SC, 4 hourly or 0.8–2.4 mg/24 hrs by continuous SC infusion

  or

• atropine 0.4–0.6 mg SC 4–6 hourly (be cautious of delirium)

These agents dry secretions and stop the ‘death rattle’.

Dyspnoea

Identify the cause, such as a pleural effusion, and treat as appropriate. Pleural taps can be performed readily in the home (consider the PleurX^® catheter). Adjust the patient's posture. Corticosteroids can be given for lung metastases. Oxygen may be necessary to help respiratory distress in the terminal stages and bedside oxygen can be readily obtained. Morphine can be used for intractable dyspnoea e.g. 2.5–5 mg (o) 4 hourly, together with haloperidol or a phenothiazine for nausea. Use a short-acting benzodiazepine (e.g. lorazepam 0.25–5 mg) sublingually if anxiety is a component.

Terminal distress/restlessness^7,11,12

(Exclude reversal causes, e.g. drugs, fear, faecal impaction, urinary retention.)

1st choice:

If very severe:

Nausea and vomiting

If due to morphine:

Alternatives: promethazine, cyclizine

If due to poor gastric emptying, use a prokinetic agent: metoclopramide, cisapride or domperidone.

Consider ondansetron or tropisetron for nausea and vomiting induced by cytotoxic chemotherapy and radiotherapy (see CHAPTER 60).

Wound dressings

To reduce pain, apply a mixture of 10 mg/mL topical morphine with 8 g/mL Intrasite hydrogel.

Cerebral metastases

Common symptoms are headache and nausea. Consider corticosteroid therapy (e.g. dexamethasone 4–16 mg daily). Analgesics and antiemetics such as haloperidol are effective.

Paraplegia

Paraplegia is especially prone to occur with carcinoma of the prostate, even when treated with LHRH analogues. The warning signs are the development of new back pain, paraesthesia in limbs or the recent development of urinary retention.¹ The objective is to prevent paraplegia developing. High-dose corticosteroids are given while arranging urgent hospital admission.

Hiccoughs^7,9

Try a starting dose of:

Swallowing granulated sugar with or without vinegar does not appear to be effective. Other drugs reported to be beneficial include baclofen, midazolam, chlorpromazine, nifedipine and metoclopramide.

Depression¹¹

• mirtazapine 30 mg (o) daily, helpful for night-time sedation and appetite

• consider methylphenidate (psychostimulant) 5 mg (o) bd since evidence indicates an improvement in symptoms¹³

Weakness and weight loss

This problem may be assisted by a high-calorie and high-protein diet. Otherwise consider total parenteral nutrition. A list of high-energy drink supplements is provided in Palliative Care: The Nitty Gritty Handbook.¹

Delirium

Determine the cause, including adverse opioid effect. Investigations include FBE, MCU, CXR, pulse oximetry. Consider treatment with olanzapine and haloperidol (refer to CHAPTER 45).

Hypercalcaemia

Consider hypercalcaemia in the presence of drowsiness, confusion, twitching and abdominal pain. It may be a paraneoplastic effect of myeloma and cancers (particularly lung and breast). It carries a poor prognosis—monitor serum calcium >3 mmol/L. Treat with rehydration, reduction of tissue mass and bisphosphonates.

The same principles of management apply to the person suffering from the many manifestations of terminal AIDS, including pain. Many of these patients wish to die at home and there are excellent caring support groups to help. It is important to become acquainted with the service network. However, in Australia this service is thankfully becoming uncommon. Guidelines are included in CHAPTER 27. A very helpful guide to symptom control is presented in Therapeutic Guidelines, Palliative Care: acquired immunodeficiency syndrome.⁷

Principles of management

• Children should not be regarded as mini-adults.

• There is a different spectrum of illness apart from childhood cancer including congenital disorders such as cystic fibrosis, neurodegenerative disorders and cerebral palsy.

• The commonest malignancy is acute lymphatic leukaemia. Other important malignancies include: lymphomas, cerebral tumours, bone tumours and solid tumours.

• The focus of care is on the physical, mental and spiritual welfare of the child and the grieving family.

• Any pain must be accurately assessed.

• Morphine is the most commonly used opioid for pain although fentanyl and hydromorphone are now widely used.

• Nausea, vomiting and constipation require special attention.

• Avoid unpalatable medications and intramuscular injections.

• Adverse reactions to tranquillisers, corticosteroids, anti-emetics and aspirin are a special problem.

• Be prepared for home management, which is usually preferred by families.

• Pay attention to the impact on the vulnerable child, the parents and siblings. Consider support groups.

The stages of the grieving process as described by Kübler-Ross⁵ may be experienced by both the patient and the family, albeit not exactly according to the five stages. The grieving process following the death of a loved one can vary enormously but many people are devastated.

The principles of care and counselling include:¹

• Be available and be patient.

• Allow them to talk while you listen.

• Reassure them that their feelings are normal.

• Accept any show of anger passively.

• Avoid inappropriate reassurance.

• Encourage as much companionship as possible, if desired.

(See guidelines for crisis counselling given in CHAPTER 5.)

Communicating with the dying patient

Good communication is essential between the doctor and patient in order to inform, explain, encourage and show empathy. However, it can be very difficult, especially with the cancer patient.

Good communication is dependent on honesty and integrity in the relationship. Telling the truth can be painful and requires sensitivity, but it builds trust that enables optimal sharing of other difficult concerns and decisions, such as abandoning curative treatment, explaining the dying process and perhaps addressing thoughts on euthanasia.

Improved communication will lead not only to better ‘spiritual’ care but also to better symptom control.¹ Give patients every opportunity to talk about their illness and future expectations, and be available and patient in offering help and support.

Spiritual issues¹

Spirituality is an important issue for all people, especially when faced with inevitable death. Many people are innately spiritual or religious and those with deep faith and a belief in ‘paradise’ appear to cope better with the dying process. Others begin to reflect seriously about spirituality and search for a meaning for life in this situation. Carers, including the attending doctor, should be sensitive to their needs and turmoil and reach out a helping hand, which may simply involve contacting a minister of religion.

Spiritual care builds on patients’ existing resources to enable them to rise above the physical, emotional and social effects of their terminal illness.¹

Advanced care planning (ACP)

ACP is a planning process where a patient, their family and carers, in consultation with a health care provider, makes decisions about his or her future health care, should he or she become incapable of making medical treatment decisions. Attention to ACP is not only important but rewarding to all parties.

The principles are:

• recognising the need to prepare for approaching death is an important medical skill

• the family needs to know that the patient is dying

• ACP is best when the patient is cognisant and involved in the decision making

• the health care is primarily patient-centred

• ensure the appointment of Medical Enduring Powers of Attorney and/or substitute decision maker for your patient

• ACP is best prior to or on admission to the caring facility or 6 months before anticipated death—then continuing review

• case conference, ideally with the GP, within this 6 months

• facilitate end-of-life pathway policy prior to death—certainly within the final week

• need for agreement for clear goals of end-of-life care, including resuscitation issues

• ACP only comes into effect when a patient is unable to make or communicate their own decisions

The question of euthanasia

This is a complex issue but will arise from time to time. It should be uncommonly encountered in the context of attentive whole-person continuing care. The non-use of life support systems, the use of ‘round the clock’ morphine, cessation of cytotoxic drugs, the use of ancillary drugs such as anti-depressants and anti-emetics, various nerve blocks and loving attention almost always help the patient cope without undue pain and suffering.³

National Institute for Health and Care Excellence (NICE). <www.nice.org.uk>, accessed January 2018.