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Key Features of Palliative Care for Patients with
Common Life Threatening Illnesses
The following pages contain some general comments about some of the palliative care issues that may be encountered by people suffering from the end stages of some of the more common disease processes. All people are different and even people with the same diagnosis may experience different problems on their illness journey. The comments about each illness are not exhaustive, but are brief summaries of some of the clinical situations that may be encountered by any health or social care professionals working with these patients. Management plans have been included to help guide health professionals. The summaries and management plans are a guide only and definitive management of the more complex symptoms should only be undertaken after discussion with your local disease based specialists and local specialist palliative care services. If you are not sure how these pages apply to you, your relative or someone you are caring for please discuss them with your doctor, district nurse, hospital doctor or the staff at the hospice. Useful websites for additional information: www.endoflifecareforadults.nhs.uk www.palliativedrugs.com www.cancerbacup.org.uk These pages have been written by: Dr Susan Salt Medical Director Trinity Palliative Care Services Trinity Hospice in the Fylde Low Moor Road Bispham Blackpool FY2 0BG dr.salt@trinityhospice.co.uk
INDEX
Bladder
Upper Gastro-intestinal Cancer (stomach and oesophagus) End Stage Congestive Cardiac Failure (CCF) Issued August 2002. Revised and rewritten July 2009 Issued August 2002. Revised and rewritten July 2009 Palliative Care of Bladder Cancer Patients

General Comments
Many patients will have had extensive investigations and treatment for polyps, over a
number of years before a malignant tumour occurs. Surgical intervention such as local
treatment via cystoscopy, cystectomy and urinary diversion may be appropriate. In addition
radical radiotherapy and intra-vesical chemotherapy may be indicated. The cancer
journey is often long with many difficult symptoms that can lead to exhaustion and an
increased risk of depression in both patient and carers.
Specific pain complexes
 Bladder spasm can be frequent and troublesome leading to severe and disabling
episodic pain which can be difficult to control. Anti-cholinergic drugs as well as
neuropathic pain agents may help, but often specialist advice is needed.
 Pelvic pain is common in advanced disease due to tumour progression. This is often
complex and only partially responds to opioids. Usually there is a neuropathic element
that will require adjuvant analgesics in the form of antidepressant and/or anti-
convulsant medication. Specialist advice is frequently needed to maintain symptom
control.

Other Complications
Recurrent haematuria is common and may be sufficient to cause anaemia. Clot retention
may result in acute retention that may be difficult to manage. Discussion is needed about
the appropriateness of repeated transfusion if the haematuria is persistent. Intra-vesical
prothrombotic agents may be of use in some cases.
Urinary incontinence may occur, causing fatigue of patients and carers through disturbed
sleep as well as social isolation because of the associated stigma. Many patients have
long term indwelling catheters, which increases the risk of cystitis and urinary tract
infections. These aggravate bladder spasm but may be difficult to treat.
Lymphoedema of the lower limbs and genital area, due to disease infiltration of the pelvic
lymph nodes of tumour bulk, may occur and requires specialist management to prevent
complications. This should include excellent skin care.
Fistulae between the bladder rectum or vagina may occur. Some may be amenable to
surgery. If surgery is not possible they can cause skin break down and be malodorous and
be very difficult to manage. Diverting the flow of urine via the judicious use of catheters
may help. Excellent skin care including the use of stoma bags to collect the leaking urine
and the use of barrier creams may help.
Renal failure may occur. Stenting the renal tract may be possible but is often
inappropriate. Dialysis is rarely indicated. Specialist advice may be needed about
maintaining symptom control in a patient with established renal failure because of the
increased toxicity of many commonly used drugs including opioids and NSAIDs.
Altered body image and problems with sexual function may arise. Depression is
common because of the protracted time frame of the illness, social isolation and the sense
of loss of dignity and control. Chronic fatigue is common often caused by nocturia in
patients who are not catheterised, chronic anaemia and broken sleep because of
spasmodic pain.
Issued August 2002. Revised and rewritten July 2009

Key Points in Palliative Care of Bladder Cancer Patients

General Comments
Urinary incontinence Urinary tract infection Issued August 2002. Revised and rewritten July 2009
Palliative Care of Patients with Primary and Secondary Brain Tumours

General Comments
Benign tumours and some malignant ones are curable if they can be completely removed
surgically.
Primary malignant brain tumours are treated with surgery where possible, but
radiotherapy and chemotherapy may also be needed. The disease course may be
protracted months or years. Primary brain tumours do not metastasise outside the brain
and spinal cord and hence the terminal stage may be prolonged.
Surgical resection of tumours carries significant risk of morbidity, which includes aphasia,
dysphasia, paralysis, blindness, and change of personality or memory problems. There is
also a risk of persistent coma or death.
Secondary brain tumours are more common. Surgical resection of some isolated
secondaries may be appropriate in breast, kidney and colon cancers. Otherwise palliative
radiotherapy for those who are fit enough may help depending on the sensitivity of the
tumour, the site of the metastases and the general fitness of the patient.
Specific pain complexes
 Headaches due to raised intra-cranial pressure are usually controlled with high
dose oral steroids and strong opioids in the majority of patients. The side effects
of steroids often limit the doses and length of time that they can be used. If there is
evidence of hydrocephalus, neuro-surgical referral for a shunt should be considered.
 Meningeal irritation occurs in advanced disease and this may produce photophobia
as well as neck stiffness. This may respond to NSAIDs and/or oral steroids.

Other complications
 Altered body shape, osteoporosis, skin fragility, steroid induced diabetes and
mental effects of steroids commonly occur if patients are on high dose steroids for a long time.  Epileptic fits are not universal but are relatively common. They may be difficult to
diagnose as they may be atypical. They may also be difficult to control and advice
from neurologists may be needed to ensure adequate control using anti-convulsant
medication.

 Disability as a result of impaired mobility, incontinence and personality changes
mean that patients and their families often need intensive multi-disciplinary
support and rehabilitation.
 Social and psychological issues are common. Many patients with primary brain
tumours are young and may be the main wage earner in a family leading to
complex financial issues. They may also have young children who need support
during their parents illness and also need to have provision for their care after the
patient has died. Children often need specialist support before and after the
patient’s death, particularly if the patient has undergone personality and behaviour
changes.
Issued August 2002. Revised and rewritten July 2009
Key Points in Palliative Care of Patients with Primary and Secondary
Brain Tumours

General Comments
Issued August 2002. Revised and rewritten July 2009 Palliative Care of Breast Cancer Patients

General comments
Metastatic recurrence is possible even after a number of years of disease free survival. If a
patient develops symptoms such as pain, persistent nausea or breathlessness it is
essential that investigations be carried out to make a firm diagnosis of their cause. This
should include chest X-ray and liver ultrasound. If bone pain is a significant issue, plain X
rays of the affected area and/or a bone scan may be helpful. Disease specific measures
including hormone manipulation, radiotherapy and chemotherapy may achieve good
palliation and should be considered in all patients, even those with advanced disease.
Genetic counselling should be considered for those families with a strong family history of
breast and /or ovarian cancer.
Specific pain complexes
Widespread bone metastases are common. Patients are at risk of:
 Pathological fracture that may occur without obvious trauma. These may need
orthopaedic intervention (pinning or joint replacement) and/or radiotherapy.
Prophylactic pinning of long bones such as humorus or femur should be considered
if there are large metastatic deposits at risk of fracture.
 Spinal cord compression that requires prompt diagnosis, high dose oral steroids in
a single daily dose and urgent, same day, discussion with an oncologist. The
steroids should be continued at a high dose until a definitive plan has been made.
They may then be titrated down in accordance with the patient’s condition and
symptoms.
 Neuropathic pain. Local recurrence of tumour or axillary lymph node spread may
directly affect the brachial plexus. This may produce neuropathic pain affecting the
arm and anterior chest wall. Metastatic spread to the spine may cause nerve root
compression and subsequent neuropathic pain. Such pain is partially opioid
sensitive but adjuvant analgesics in the form of anti-depressant and/or anti-
convulsant medication are usually required to supplement the effect of the opioid.
Specialist advice is frequently needed to maintain good symptom control.
 Liver metastases often occur and may cause pain. This usually responds well to
Non-steroidal anti-inflammatory drugs (NSAIDs) or steroids. Liver metastases
may also lead to hepatomegaly that may cause squashed stomach syndrome with
delayed gastric emptying, persistent nausea, occasional vomiting, loss of appetite
and a feeling of fullness. This may respond to a prokinetic agent such as
metoclopramide.

Other complications
Hypercalcaemia may occur. In most cases treatment should be considered with IV
hydration and IV bisphosphonates.

Lymphoedema usually affects the arm involved in the original surgery. It can develop at
any time after diagnosis. It needs to be actively managed if complications are to be
avoided. Management includes good skin care, avoiding additional trauma to the affected
arm (including taking of blood tests and BP measurement) and appropriately fitting
compression garments.
Lung and pleural disease are common and may cause breathlessness and cough.
Consider draining a pleural effusion if present. This may only afford temporary relief as the
fluid may recur. Active management of the underlying disease using chemotherapy or
hormone manipulation may reduce the rate of accumulation of the fluid. Surgical
pleurodesis may be appropriate.
Issued August 2002. Revised and rewritten July 2009

Cerebral metastases are less common. Decisions about investigation and management
may be complex and need to be made on an individual basis, (see notes on secondary
brain tumours). Associated headaches usually respond well to steroids and opioids. There
is a risk of epileptic fits and prophylactic anti-convulsant medication may be
appropriate.
Superior vena cava obstruction (SVCO) can occur in patients with an indwelling venous
catheter and less commonly in those patients who have extensive pulmonary disease.
Management includes removal of the line (in consultation with the patient’s oncologist),
vascular stenting, radiotherapy and high dose steroids. Long-term anti-coagulation
may be considered.
Altered body image and problems with intimate relationships may arise as a consequence
of the disease itself, (fungating breast tumours), surgery and subsequent treatment.
Depression and anxiety are common because of the often extensive burden of disease,
protracted time frame of the illness and the burden of treatment.

Key Points in Palliative Care of Breast Cancer Patients

General Comments
Depression and anxiety  Protracted course leading to

Issued August 2002. Revised and rewritten July 2009

Palliative Care of Colorectal Cancer Patients
General Comments
Prognosis is closely linked to histological staging (Duke’s classification). Adjuvant
chemotherapy may be helpful in prolonging disease free survival. Patients may present
with bowel obstruction (see below). Genetic counselling should be considered for those
with a family history of colonic cancer or who have polyposis coli.
Specific pain complexes
 Liver metastases often occur and may cause pain. This usually responds well to
Non-steroidal anti-inflammatory drugs (NSAIDs) or steroids. Liver metastases
may also lead to hepatomegaly that may cause squashed stomach syndrome with
delayed gastric emptying, persistent nausea, occasional vomiting, a loss of appetite
and a feeling of fullness. This may respond to a prokinetic agent such as
metoclopramide.
 Perineal and pelvic pain may be caused by advancing disease or by surgical
intervention. There is nearly always a neuropathic element to the pain that will only
be partially opioid sensitive. Adjuvant analgesics such as antidepressant and/or
anticonvulsant medication may be needed as well as more specialist interventions
such as nerve blocks.
 Tenesmus is a unique type of neuropathic pain. It requires specialist assessment,
but may respond to drugs that have an effect on smooth muscle including
nifedipine, nitrates and baclofen.
 Bone metastases. These are becoming increasingly common as adjuvant
chemotherapy prolongs the disease course. Response to NSAIDs and radiotherapy is variable. Management of subsequent pain may be difficult and specialist advice should be sought.
Other complications
Bowel obstruction unless it can be palliated surgically should be managed medically
using a syringe driver containing a mixture of analgesics, anti-emetics and anti-
spasmodics. Naso-gastric tubes are rarely needed, and adequate hydration can usually
be maintained orally if the nausea and vomiting are adequately controlled.

Fistulae between the bowel and the skin, bladder or vagina may occur. These can be very
difficult to manage and require a multidisciplinary approach with specialist input. Some may
be amenable to surgery. If surgery is not possible they can cause skin break down and be
malodorous and be very difficult to manage. Excellent skin care including the use of stoma
bags to collect the leaking gut contents and the use of barrier creams may help.
Anorexia and altered taste are very common with advanced disease and difficult to
manage, particularly for the family. Small, frequent and appetising meals may help as
may supplement drinks. Low dose steroids may temporarily boost the appetite.
Rectal discharge and bleeding are unpleasant and difficult symptoms to manage. They
may respond to palliative radiotherapy. Seek specialist advice.
Hypoproteinaemia is common due to poor oral intake and poor absorption from the bowel
and may lead to lower limb oedema. This may be complicated by pelvic disease causing to
lower limb lymphoedema. Early assessment by the specialist lymphoedema service is
essential to maintain patient’s comfort and prevent complications.
Issued August 2002. Revised and rewritten July 2009
Anaemia may occur due to chronic bleeding from the tumour especially rectal lesions.
Control of bleeding from rectal tumour may be achieved through radiotherapy in some
cases. A trial of pro-thrombotic agents such as tranxemic acid should be considered.
Anaemia may warrant regular blood transfusion in some cases. Discussion is needed
about the appropriateness of repeating transfusion if the anaemia is persistent.
Cerebral metastases are less common, but more likely in patients with a rectal carcinoma.
Decisions about investigation and management may be complex and need to be made on
an individual basis, (see notes on secondary brain tumours). There is a risk of epileptic fits
and prophylactic anti-convulsant medication may be appropriate.

Key Points in Palliative Care of Colo-rectal Cancer Patients

General Comments
Issued August 2002. Revised and rewritten July 2009
Palliative Care of Gynaecological Cancer Patients

General comments
Primary treatment may have affected body image, sexual function and fertility and this
will impact on coping strategies. Ovarian and vulval cancers often present late and so it
may be appropriate for specialist palliative care input from the point of diagnosis. Genetic
counselling should be considered for close female relatives of patients with ovarian cancer
particularly if there is also a strong family history of breast cancer.
Specific pain complexes
 Perineal and pelvic pain is common in all three of the common malignancies;
cervical, ovarian and vulval carcinomas. There is nearly always a neuropathic
element to the pain that will only be partially opioid sensitive. Adjuvant analgesics
such as antidepressant and/or anticonvulsant medication may be needed as
well as more specialist interventions such as nerve blocks.

Other Complications:
Lymphoedema affecting one or both lower limbs may develop with uncontrolled pelvic
disease. It can develop at any time following diagnosis. It needs to be actively managed if
complications are to be avoided. Management includes good skin care, avoiding additional
trauma to the affected leg(s) and appropriately fitting compression garments.
Ascites is particularly common with ovarian cancer and can be difficult to manage. Oral
diuretics, particularly spironolactone in combination with a loop diuretic such as
furosemide may help a little. Repeated paracentesis is often needed. Consideration of a
peritovenous (Leveen) shunt may be appropriate in some cases where prognosis is
thought to be longer than three months.
Complete or subacute bowel obstruction can occur in advanced disease and is often
not amenable to surgical intervention and should be managed medically using a syringe
driver containing a mixture of analgesics, anti-emetics and anti-spasmodics. Naso-
gastric tubes are rarely needed, and hydration can often be maintained orally if the nausea
and vomiting are adequately controlled.
Renal impairment can develop in any patient with advanced pelvic disease. It may be a
pre-terminal event. Ureteric stenting may be appropriate depending on the patient’s
perceived prognosis, the patient’s wishes and future treatment options. Specialist advice
around maintaining symptom control may be needed because of the increased potential of
toxicity form commonly used drugs such as opioids and NSAIDs.

Vaginal or vulval bleeding may respond to antifibrinolytic agents such as tranexamic
acid, radiotherapy and/or surgery. Anaemia may warrant regular blood transfusion in
some cases. Discussion is needed about the appropriateness of repeating transfusion if
the anaemia is persistent.
Offensive vaginal or vulval discharge can cause considerable distress to patient and
carers. Topical or systemic metronidazole may help, as can barrier creams.
Deodorising machines may also help if the patient is confined to one room.
Vesico-colic and recto-vaginal fistulae need a surgical assessment. These can be very
difficult to manage and require a multidisciplinary approach with specialist input.
Issued August 2002. Revised and rewritten July 2009  Social and psychological issues are common because of altered body image, issues
around fertility and sexual function. Many patients with cervical primaries are young and
may be the main wage earner in a family leading to complex financial issues. They
may also have young children who need support during their parents illness and also
need to have provision made for their care after the patient has died.


Key Points in Palliative Care of Gynaecology Cancer Patients

General Comments
Vaginal bleeding Vaginal discharge Vaginal fistulae Issued August 2002. Revised and rewritten July 2009 Palliative Care of Head and Neck Cancer Patients
General Comments
There are a wide variety of cancers affecting the head and neck including the oral cavity,
oropharynx, larynx, hypopharynx, nasopharynx, nasal cavity sinuses and salivary glands.
They have two aetiological factors in common, namely cigarette smoking and heavy alcohol
consumption. Many of the patients with these cancers have lifestyles that mean they find it
hard to use the health service effectively.
Frequently the patients present late when curative surgery and radiotherapy, which are
the mainstays of treatment, cannot be undertaken.
Specific pain complexes
 Neuropathic pain affecting the head and neck and radiating to the upper arm is not
uncommon. This can be the result of direct compression of nerves by the tumour or a result of treatment. There may be associated hypersensitivity of the skin and oral mucosa that may be so severe that the patient is unable to tolerate a light breeze or chewing food. The pain syndromes are often complex and only partially respond to opioids. An adjuvant analgesic in the form of anti-depressants and/or anti-convulsant medication is usually needed. Specialist advice is frequently needed to maintain symptom control especially as compliance with medication may be a problem.
 Dysphagia due to direct compression by a tumour mass or lymphadenopathy causes
both difficulty and pain on swallowing. Feeding gastrotomies may be needed to maintain nutrition and aid with the administration of medication as the oral route may not be unreliable or unavailable. There may be ethical dilemmas towards the end of life particularly with regard to the administration of feeds in the last days of life.
Other complications
The tumour or the surgery performed often adversely affects a patient’s body image in a
site that is hard to hide from public view. Patients often become socially isolated as they
feel disfigured may have problems speaking and so become reluctant to go out.
Depression is a common feature. Relationship problems are not uncommon.
Oral problems are common. Dry mouth as a consequence of treatment or as a side-
effect of medication may cause problems with speaking, altered taste and chewing food.
Dental caries may be accelerated by a dry mouth so patients need excellent and regular
mouth care. Poor saliva production may be helped by chewing sugar free gum or the
regular use artificial saliva. Oral thrush should be treated with antifungal mouth wash in the
first instance. Dentures should also be soaked in antifungal solution.
Anorexia and altered taste are very common with advanced disease and difficult to
manage, particularly for the family. Small, frequent and appetising meals may help as
may supplement drinks. Low dose steroids may temporarily boost the appetite.
Difficulties with articulation and speech production are common. In some cases after
larngectomy speech will not be possible and the patient has to learn to communicate in
other ways. For others the quality of the voice may change significantly and make the
patient self-conscious. Recurrent laryngeal nerve palsy results in a hoarse voice. This
may be improved to some extent by Teflon injections into the vocal cord. All these
problems may need input of specialist speech and language therapists.
Communication aids may be needed after major surgery to enable a patient to express
their needs and preferences.
Issued August 2002. Revised and rewritten July 2009 Difficulty breathing and stridor may develop in some patients. In some cases a
tracheostomy is formed to prevent choking. This needs regular specialist care. Home
suction to manage secretions may be needed.

Fungating and malodorous tumours can cause considerable distress. Radiotherapy
may help in some cases especially where there is bleeding. Topical antibiotics may help
along with regular dressings sensitively applied to maintain dignity, but cover the most
disfiguring parts of the tumour. The use of deodorisers in the patient’s room may help.

Many patients with advanced disease have problems have a poor cough reflex that makes
expectoration of oral secretions that may be very thick difficult. Treating infections with
antibiotics can reduce the viscosity of secretions and so relieve distress. Nebulised
normal saline can moisten airways, making it easier for patients to expectorate secretions.
Oral mucolytics can sometimes help.
Major haemorrhage. Patients with progressive tumours near the large blood vessels of
the neck are at risk of a sudden massive bleed. This is rare, but difficult to manage and the
early involvement of specialists should be considered.
Key Points in Palliative Care of Head and Neck Cancer Patients

General Comments
 Social Isolation  Relationship problems Issued August 2002. Revised and rewritten July 2009 Palliative Care of Patients with Chronic Leukaemia, Lymphomas and Myeloma
General Comments
The clinical course tends to be very variable, but is characterised by a protracted cycle of
relapses and remissions. This can cause considerable distress as the patients and their
carers have to live with considerable uncertainty about the future. Both patient and the
professionals involved with their care may find it hard to recognise and then accept a
patient is entering the terminal phase.
Infection is a frequent and unpredictable complication of both the disease process and its
treatment. It can be fatal and this makes the prognosis even more uncertain.
Chemotherapy may continue in advanced illness because of the possibility of a further
remission and/or useful palliation.
Specific pain complexes
 Bone pain due to infiltration of the bones and joints is very common. The pain is often
worse on movement or weight-bearing, which makes titration of analgesics very difficult.
The pain often responds to radiotherapy and/or oral steroids. Non-steroidal anti-
inflammatory drugs (NSAIDs) may help but must be used with caution because they
may interfere with platelet and renal function.
 Pathological fractures are particularly common in myeloma due to the lytic bone
lesions. These often require orthopaedic intervention and subsequent radiotherapy.
Prophylactic pinning of long bones and/or radiotherapy should be considered to prevent
fracture and reduce the likelihood of complex pain syndromes developing.
 Spinal cord compression requires prompt diagnosis, high dose oral steroids in a
single daily dose and urgent, same day, discussion with a clinical oncologist. The
steroids should be continued at a high dose until a definitive plan has been made. They
may then be titrated down in accordance with the patient’s condition and symptoms.
 Wedge and crush fractures of the spinal column can lead to severe back pain which
is often associated with nerve compression and neuropathic pain. Such pain is partially
opioid sensitive but adjuvant analgesics in the form of anti-depressants and/or anti-
convulsant medication are usually required to supplement the effect of the opioid.
Specialist advice is frequently needed to maintain symptom control.
Other complications
Bone marrow failure is usual. Recurrent infections and bleeding episodes can leave
the patients and carers exhausted. Dependence on frequent blood and platelet
transfusions may mean that difficult decisions about stopping transfusions must be faced at
some stage.

Night sweats and fever are common, imposing a heavy demand on carers, particularly as
it may mean several changes of night and bed clothes. Specialist advice may help in
relieving the symptom, as there are a number of drugs that appear to be effective although
not licensed.

Hypercalcaemia may occur, especially in myeloma. It should be considered in any patient
with persistent nausea, altered mood or confusion, even if this is intermittent, worsening
pain and/or constipation. Treatment with IV hydration and IV bisphosphonates should
be considered for a first episode. Resistant hypercalcaemia may be a pre-terminal event
when aggressive management would be inappropriate.
Issued August 2002. Revised and rewritten July 2009 Oral problems are common. Dry mouth as a consequence of treatment or as a side-
effect of medication may cause problems with speaking, altered taste and chewing food.
Dental caries may be accelerated by a dry mouth so patients need excellent and regular
mouth care. Poor saliva production may be helped by chewing sugar free gum or the
regular use artificial saliva. Oral thrush is common and should be treated aggressively with
nystatin mouth wash in the first instance. Dentures should also be soaked in nystatin.
Anorexia and altered taste are very common with advanced disease and difficult to
manage, particularly for the family. Small, frequent and appetising meals may help as
may supplement drinks. Low dose steroids may temporarily boost the appetite, although
these may already be in use as part of the disease modifying regime.
Key Points in Palliative Care of Patients with Chronic leukaemia,
Lymphoma and Myeloma

General Comments
Oral problems Dry mouth Altered taste Dental caries Spinal cord compression Wedge / crush fractures Issued August 2002. Revised and rewritten July 2009 Palliative Care of Lung Cancer Patients

General Comments
This is one of the commonest cancers. There is a direct link between squamous cell
carcinoma and smoking, (both active and passive). This causal link may be the cause of
emotional distress in the patient and their carers. Lung cancers often occur on a
background of pre-existing lung disease which may alter the patient’s perception of the
intensity of breathlessness and of the burden of a persistent cough. On the whole the
prognosis for lung cancers not amenable to surgery is poor, with 90% of patients dying
within a year of diagnosis.
Specific pain complexes
 Pleuritic pain may be associated with the tumour itself, metastases in the rib, or
local infection. This type of pain responds well to non-steroidal anti-inflammatory
drugs (NSAIDs). It may also be helped by local nerve blockade
 Pancoast tumour (tumour in the apex of an upper lobe) can produce severe
neuropathic pain affecting shoulder and arm which will only be partially opioid
responsive and will need adjuvant analgesics such as antidepressant and/or
anticonvulsant medication. Early referral for specialist help should be considered.
 Bone metastases may occur putting the patient at risk of pathological fractures
and spinal cord compression. Management of subsequent pain may be difficult
and specialist advice should be sought.

Other complications:
Breathlessness is common and can be very distressing for carers. Treat reversible
causes such as anaemia and pleural effusion where appropriate. Give clear explanations
of what is happening. Ensure that practical measures such as sitting the patient up,
opening windows and using fans have been discussed with the family. Regular doses of
short acting oral morphine (2.5 – 5 mg) every 2 - 4 hours may decrease the sensation of
breathlessness. Other more specialist interventions such as palliative radiotherapy,
endobronchial laser therapy and stenting may help some patients. Panic and anxiety
are frequently associated with breathlessness and may be helped by simple relaxation
techniques. A low dose of an anxiolytic such as diazepam may be helpful. Oxygen
should be used with caution and rarely has any benefit beyond the other measures
outlined, unless the patient is measurably hypoxic.
Haemoptysis is a frightening symptom. Palliative radiotherapy may be effective if the
patient is fit enough. Oral antifibrinolytics such as tranexamic acid may help.
Occasionally frequent small episodes herald a catastrophic haemoptysis. This is a rare,
but distressing situation to manage and early involvement of specialists should be
considered.
Cough can exacerbate breathlessness and pain; can affect sleep and a patient’s ability to
eat. Its management will depend on the cause but it is often appropriate to try and
suppress the cough pharmacologically using codeine or morphine linctus. If not
responding to simple measures refer for specialist assessment.

Dysphagia may occur because of tumour compression, from para-tracheal
lymphadenopathy or from pressure of a large pleural effusion. Small meals given often and
a soft diet may help. In addition antacids and proton pump inhibitors may ease
symptoms from reflux.
Hypercalcaemia may occur, even in the absence of bone metastases. It should be
considered in any patient with persistent nausea, altered mood or confusion, even if this is
intermittent, worsening pain and or constipation. It may be a pre-terminal event when
treatment with IV hydration and IV bisphosphonates would be inappropriate.
Issued August 2002. Revised and rewritten July 2009 Cerebral and cerebellar metastases are common. Decisions about investigation and
management may be complex and need to be made on an individual basis. Altered
behaviour and personality as well as problems of comprehension and communication can
be very distressing for relatives. Persistent headache, worse in the mornings and
unexplained vomiting may be early signs of this diagnosis. There is a risk of epileptic fits
and prophylactic anti-convulsant medication may be appropriate.

Hyponatraemia and other biochemical imbalances are particularly common in small cell
lung cancer. Management can be complex and needs specialist input.

Altered taste and anorexia are common. Good oral hygiene, effective treatment of oral
candidiasis may help. Carers may find it helpful to talk through different ways of
encouraging the patient to eat, such as freezing supplement drinks to make lollipops,
making small meals frequently etc.
Superior vena caval obstruction (SVCO) can occur in patients who have extensive
pulmonary disease, particularly small cell lung cancer. Management includes consideration
of vascular stenting, radiotherapy and high dose oral steroids in a single daily dose.
Key Points in Palliative Care of Lung Cancer Patients

General Comments
 Rapid deterioration  Hyponatraemia Issued August 2002. Revised and rewritten July 2009 Palliative Care of Patients with Mesothelioma

General Comments
This usually affects the lung but can affect other parts of the body particularly the
peritoneum. It is associated with exposure to asbestos and there are clusters of cases
around certain industrial sites. It is a relentlessly progressive tumour.
It is important that the patient is aware that they or members of their family (spouse) may
be entitled to compensation and should consult a specialist lawyer about this.
All patients must have a coroner’s post mortem regardless of any compensation claims
or litigation. The family should be made aware of this at an appropriate time to try and
minimise distress at the time of death. It is useful to find out before a death what the local
coroner’s office will do in terms of who, if any one will visit and how quickly the post mortem
may be carried out.
Specific pain complexes
 Mesotheliomas can produce severe neuropathic pain which will only be partially
opioid responsive and will need adjuvant analgesics such as antidepressant and/or
anticonvulsant medication. Early referral for specialist help should be considered.
Local nerve blockades can help in some cases.

Other complications
Pleural effusions are common, frequently blood stained and become increasingly difficult
to aspirate as the disease progresses. Surgical intervention to prevent re-accumulation
of fluid may be helpful if carried out early enough.
The tumour may grow along the track of a biopsy or drainage needle to produce a
cutaneous lesion. These areas can become painful, ulcerated and can be difficult to
manage. Palliative radiotherapy has a limited role to play in preventing the complication
at the time of biopsy and also in managing established cutaneous spread.
Breathlessness can be severe due to pleural disease limiting the capacity of the lung as
well as the occurrence of pleural effusions. Give clear explanations of what is happening.
Ensure that practical measures such as sitting the patient up, opening windows and using
fans have been discussed with the family. Regular doses of short acting oral morphine
(2.5 – 5 mg) every 2 – 4 hours may decrease the sensation of breathlessness. Panic and
anxiety are frequently associated with breathlessness and may be helped by simple
relaxation techniques. A low dose of an anxiolytic such as diazepam may be helpful.
Other treatment options are limited.
Cough can exacerbate breathlessness and pain; can affect sleep and a patient’s ability to
eat. Its management will depend on the cause but it is often appropriate to try and
suppress the cough pharmacologically using codeine or morphine linctus. If not
responding to simple measures refer for specialist assessment.
Altered taste and anorexia are common. Good oral hygiene, effective treatment of oral
candidiasis may help. Carers may find it helpful to talk through different ways of
encouraging the patient to eat, such as freezing supplement drinks to make lollipops,
making small meals frequently etc.
Ascites occurs with peritoneal mesothelioma. The ascitic fluid is frequently blood stained
and becomes increasingly difficult to aspirate as the disease progresses.
Issued August 2002. Revised and rewritten July 2009 Key Points in Palliative Care for Patients with Mesothelioma
General Comments
Issued August 2002. Revised and rewritten July 2009
Palliative Care of Prostate Cancer Patients

General Comments
This is a common cancer that most often affects elderly men. The time course can be very
variable ranging from years with relatively few symptoms, to an illness that lasts months
with many symptoms. The mainstay of treatment is hormonal manipulation with
palliative radiotherapy. A few patients present early enough for potentially curative
treatment to be attempted using surgery and/or radiotherapy.

Specific pain complexes
Widespread bone metastases are common and are often present at diagnosis. Patients
are at risk of
 Pathological fracture that may occur without obvious trauma. These may need
orthopaedic intervention (pinning or joint replacement) and/or radiotherapy.
 Spinal cord compression that requires prompt diagnosis, oral high dose steroids in
a single daily dose and urgent, same day, discussion with a clinical oncologist.
The steroids should be continued at a high dose until a definitive plan has been
made. They may then be titrated down in accordance with the patient’s condition
and symptoms.
 Neuropathic pain. Local recurrence of tumour, pelvic spread or a collapsed
vertebra may cause neuropathic pain. Such pain is partially opioid sensitive but
adjuvant analgesics in the form of anti-depressant and/or anti-convulsant
medication are usually required to supplement the effect of the opioid. Specialist
advice is frequently needed to maintain symptom control.
 Bone pain. If the tumour is hormone sensitive then bone pain often responds to a
change in hormone therapy. Skilled pain management is often needed and
specialist advice should be sought about the appropriate use of radiotherapy and
radioactive strontium as well as nerve blockade. A trial of a bisphosphonate
paraenterally should also be considered. Patients need to be made ware of the risk
of osteonecrosis of the jaw and should have a dental examination before the infusion
is commenced.

Other complications
Bone marrow failure may occur in patients with advanced disease. Typically the patient
has symptomatic anaemia and thrombocytopenia. Support with palliative blood
transfusions may be appropriate initially, but their appropriateness should be discussed
with the patient and their family when there is no longer symptomatic benefit gained from
them.

Urinary incontinence may occur, causing fatigue of patients and carers through disturbed
sleep as well as social isolation because of the associated stigma. Many patients have
long term indwelling catheters, which increases the risk of cystitis and urinary tract
infections. These may cause bladder spasm which may be difficult to treat.

Retention of urine caused by problems with micturition and haematuria may lead to
retention of urine. This may be acute and painful, or chronic and painless. If the patient is
unfit for transurethral resection of the prostate (TURP) then consider a permanent
indwelling urinary catheter. Chronic urinary retention with outflow obstruction causes
back pressure on the kidney and can lead to renal failure.
Issued August 2002. Revised and rewritten July 2009

Lymphoedema of the lower limbs and occasionally the genital area is usually due to
advanced pelvic disease. It can develop at any time in a patient’s cancer journey. It needs
to be actively managed if complications are to be avoided. Management includes good
skin care and using appropriately fitting compression garments.

Altered body image and sexual dysfunction can result from any of the treatment
modalities, hormone manipulation, radiotherapy, or surgery. This may be exacerbated by
apathy and clinical depression that are particularly common in patients with prostate
cancer. Specialist mental and psychological health strategies may be required.

Key Points in Palliative Care of Prostate Cancer Patients

General Comments
Urinary incontinence Urinary tract infection Issued August 2002. Revised and rewritten July 2009 Palliative Care of Upper Gastrointestinal Cancer Patients
– Stomach and oesophageal

General Comments
Mild and non-specific symptoms often precede the onset of dysphagia for many months in
oesophageal carcinoma. Stomach cancer often presents late and is frequently advanced
at presentation.
Specific pain complexes
 Liver metastases often occur and may cause pain. This usually responds well to Non-
steroidal anti-inflammatory drugs (NSAIDs) or steroids. Liver metastases may also
lead to hepatomegaly that may cause squashed stomach syndrome with delayed
gastric emptying, persistent nausea, occasional vomiting, a loss of appetite and a
feeling of fullness. This may respond to a prokinetic agent such as metoclopramide.
 Oesophageal spasm may occur and can be difficult to manage. Specialist advice
should be sought. It may be caused by oesophageal candidiasis that needs systemic
treatment with oral imidazole antifungals such as fluconazole, or itraconazole.
 Involvement of the coeliac plexus causes a difficult pain syndrome with non-specific
abdominal pain and mid back pain. Blockade of the plexus using anaesthetic
techniques can be very effective.

Other complications
Dysphagia. Can occur in both oesophageal and stomach cancer. It may be helped by
stenting, although the stent itself may cause discomfort. Oncological treatment of the
tumour may provide temporary relief. Advice about appropriate diet and consistency of the
food taken may also help. Feeding gastrostomies can improve nutrition and quality of life
but can cause ethical dilemmas towards the end of life with regard to continuing nutrition
including the volume of feed, its calorie content and the rate of infusion.

Regurgitation of food may occur due to motility problems. Is rarely associated with
nausea and can be differentiated from vomiting by the fact it happens passively without
retching. Sitting the patient up and using thickened fluids may help. Prokinetics such as
metoclopamide may help with some patients.
Anorexia is frequent and often profound. There may be a fear of eating because of pain.
Rapid satiation is also a problem because of tumour bulk or previous surgery reducing the
capacity of the upper GI tract to cope with food. This may bring the patient and their carer
into conflict about food and the ‘need to eat’. Open and honest explanation can help to
relieve anxiety and provide practical approaches to dealing with the situation. This includes
discussing using a soft diet, freezing supplement drinks to make lollipop and eating and
drinking often.

Altered taste is also common. Good oral hygiene, effective treatment of oral candidiasis
may help.
Weight loss and altered body image. Can be extreme with these cancers and can cause
real problems for the patient and their family.
Nausea and vomiting can be persistent and difficult to control. Specialist advice is often
needed and drugs may need to given subcutaneously. Small frequent meals may
improve the pattern of vomiting.


Issued August 2002. Revised and rewritten July 2009 Haematemsis may be one of the presenting symptoms but can also occur as the tumour
progresses. Where appropriate, identifying and controlling the bleeding points, either
endoscopically or surgically may help. Localised Brachytherapy or laser therapy to the
tumour, where available, can reduce the incidence. There is risk of a major bleed. This is a
difficult situation to manage and early involvement of specialists should be considered.Key
Points in Palliative Care of Upper Gastro-intestinal Cancer Patients
General Comments
Haematemesis Dysphagia Oesophageal spasm Regurgitation Issued August 2002. Revised and rewritten July 2009 Palliative Care of Patients with Carcinomatosis of unknown primary

General comments
In 5% of patients presenting with metastatic cancer the site of origin is never established.
Prognosis is generally poor. It is often difficult to anticipate, and advise on, the rate of
disease progression and therefore to advise patients and their carers about symptoms and
mode of deterioration that might occur.
It can be difficult to know how aggressively to pursue the primary cancer site. Cancers that
respond to oncological intervention such as breast, thyroid, lymphoma, ovary and testicular
should be considered.
Anxiety is common in this group of patients. Not knowing the site of the primary tumour
causes considerable distress. Extensive investigations may raise false expectations and
may exhaust the patient. Equally, patients and carers may feel cheated of the chance to
have effective treatment if the primary is not looked for.
Carers may find coming to terms with the patient’s death difficult and are at greater risk of
an adverse bereavement reaction.
All the symptoms of the common cancers should be expected. The site where the cancer
was first identified (usually liver, bone or lung) may produce symptoms in line with other
cancers.
Key Points

 Anxiety
Issued August 2002. Revised and rewritten July 2009
Key Points in Palliative Care of Patients with Carcinomatosis of
unknown primary
General Comments
Breathlessness Cough Respiratory tract secretions Liver capsular pain Nausea and vomiting Squashed stomach syndrome Ascites

Issued August 2002. Revised and rewritten July 2009
Palliative Care of Patients with End Stage Cardiac Failure

General Comments
The clinical course tends to be very variable, but the end stage is usually characterised by
an increasing frequency of exacerbations of cardiac failure over time with worsening
breathlessness and persistent peripheral oedema. This uncertainty and the profound
fatigue experienced in end stage cardiac failure cause considerable distress to patients and
their carers. There may be emotional distress in patients and carers because of the link
between heart disease and smoking. Patients and health professionals may find it hard to
recognise and accept that the terminal phase is approaching, as the patient may have
already survived a number of life threatening episodes. Sudden death is not uncommon.
Specific pain complexes
 Liver capsular pain due to liver congestion from fluid overload. This is only partially
opioid responsive. The pain responds well to non-steroidal anti-inflammatory drugs
(NSAIDs) or oral steroids, but these may worsen cardiac function and so be poorly
tolerated.
 Generalised aches, particularly of limbs due to impaired circulation. These may vary
in location and intensity, are often worse at night, on exertion and when a limb is
elevated. They may respond to simple analgesics such as paracetamol, but may need
opioid medication. Follow the analgesic ladder.
 Ischaemic pain, both cardiac and peripheral due to impaired circulation. This may
respond to regular opioids. For lower limb pain, lumbar sympathectomy may help in some cases.
Other Complications
Breathlessness is common and can be very distressing for patients and carers. Give
clear explanations of what is happening. Ensure that practical measures such as sitting the
patient up, opening windows and using fans have been considered. Treat reversible
causes where possible and appropriate. Consider maximising diuretic and cardiac therapy
and treating arrhythmias and underlying chest infections where present. Regular doses of
short acting oral morphine (2.5 - 5 mg) every 2 - 4 hours may decrease the sensation of
breathlessness and can temporarily improve cardiac function. Panic and anxiety are
frequently associated with breathlessness and may be helped by simple relaxation
techniques. A low dose of an anxiolytic such as diazepam may be helpful.
Anorexia and altered taste are common. Good oral hygiene and effective treatment of
oral candidiasis may help. Carers may find it helpful to talk through different ways of
encouraging the patient to eat, such as freezing supplement drinks to make lollipops,
making small meals frequently etc. Hepatomegaly may cause squashed stomach
syndrome with delayed gastric emptying and a feeling of fullness. This may respond to a
prokinetic agent such as metoclopramide.
Oedema of the lower limbs and ascites frequently develop. It needs to be actively
managed if complications are to be avoided. Management includes good skin care,
avoiding additional trauma to the affected leg(s), elevation of the affected limbs, aggressive
treatment of superficial infections, and maximising cardiac function.
Renal impairment due to poor perfusion may lead to anorexia, profound fatigue and
significant alteration in the handling of renally excreted drugs, particularly opioids.
Issued August 2002. Revised and rewritten July 2009 Cough can exacerbate breathlessness and pain; can affect sleep and a patient’s ability to
eat. Its management will depend on the cause but it is often appropriate to try and
suppress the cough pharmacologically using codeine linctus or morphine. If not
responding to simple measures, refer for specialist assessment.

Nausea and vomiting due to uraemia, hepatic congestion and/or oedema of the bowel
may be profound. Specialist advice is often needed and drugs may need to given
subcutaneously. Small frequent meals may improve the frequency of vomiting.
Key Points in Palliative Care of End Stage Cardiac Patients

Breathlessness Cough Respiratory tract secretions Liver capsular pain Nausea and vomiting Squashed stomach syndrome Ascites Issued August 2002. Revised and rewritten July 2009 Palliative Care of Patients with End Stage Respiratory Disease

General Comments
The clinical course tends to be very variable depending on the underlying cause of the
chest disease, but the end stage is usually characterised by an increasing frequency of
exacerbations in breathlessness, with or without infection. As the chest disease worsens
there is often concurrent heart failure. Uncertainty of prognosis, the profound physical
limitation and fatigue experienced by the patient can cause considerable distress to both
patient and their carers, which may lead to depression. There may also be emotional
distress because of the link with smoking and exposure to some industrial processes.
Patients and the professionals involved in their care may find it hard to recognise and
accept that the terminal phase is approaching, as the patient may have survived a number
of severe exacerbations in the past.
Specific pain complexes
 Generalised aches particularly of the chest wall and limbs due to impaired
oxygenation and the physical effort of breathing. These may be exacerbated by
concurrent medical problems and steroid induced osteoporosis. They may respond
to simple analgesics such as paracetamol, but may need stronger analgesics, so
follow the analgesic ladder.
 Rib pain due to rib fracture subsequent to frequent violent coughing episodes. The
pain responds well to non-steroidal anti-inflammatory drugs (NSAIDs) or oral
steroids, but these may worsen respiratory function and so be poorly tolerated.
 Pleuritic pain may be associated with local infection. This type of pain responds
well to non-steroidal anti-inflammatory drugs (NSAIDs). It may also be helped by
local nerve blockade

Other complications:
Breathlessness is common and can be very distressing for patients and carers. Give
clear explanations of what is happening. Ensure that practical measures such as sitting the
patient up, opening windows and using fans have been considered. Treat reversible causes
such as infection, anaemia and pleural effusion where appropriate. Oxygen therapy should
be used with care and under the guidance of a respiratory physician or other specialist.
Regular doses of short acting oral morphine (2.5 – 5 mg) every 2 - 4 hours may
decrease the sensation of breathlessness. Panic and anxiety are frequently associated
with breathlessness and may be helped by simple relaxation techniques. A low dose of
an anxiolytic such as diazepam may be helpful.

Cough can exacerbate breathlessness and pain; can affect sleep and a patient’s ability to
eat. Its management will depend on the cause but it is often appropriate to try and
suppress the cough pharmacologically using codeine linctus or morphine. If not
responding to simple measures refer for specialist assessment.
Altered taste and anorexia are common. Severe breathlessness may affect a patient’s
ability to eat. Good oral hygiene, effective treatment of oral candidiasis and management
of dry mouth may help. Carers may find it helpful to talk through different ways of
encouraging the patient to eat, such as freezing supplement drinks to make lollipops,
making small meals frequently etc.


Issued August 2002. Revised and rewritten July 2009 Respiratory tract secretions can be troublesome, particularly as the patient deteriorates.
Treating infections with antibiotics can reduce the viscosity of secretions and so relieve
distress. Nebulised normal saline can moisten airways, making it easier for patients to
expectorate sputum/secretions. Oral mucolytics can sometimes help.
Key points in Palliative Care of End Stage Respiratory Patients

Issued August 2002. Revised and rewritten July 2009 Palliative Care of Patients with end stage renal disease

General Comments
The general course can be very variable depending on the underlying pathology of the
renal disease. Issues around renal transplantation and effectiveness of continued dialysis
may complicate the approach to palliation of end stage renal disease. The frequency of
hospital visits and dependency on the healthcare system, as well as the profound fatigue
and anorexia most patients experience, may lead to significant clinical depression. As
many drugs are excreted by the kidney, problems with drug toxicity are complex, and the
risk/benefit ratio may be hard to determine in some cases. The patient and their carers are
often well known to the healthcare team, which can add to the distress and difficulties for
the team in recognising the terminal phase. It is easy for patients and carers to feel
abandoned if active management of their renal failure is suddenly stopped. Sudden death
is not uncommon due to electrolyte imbalances inducing cardiac arrhythmias.
Specific pain syndromes
 Joint and bone pain is common and can be difficult to manage. The pain may
respond to NSAIDs but these may adversely affect renal function, thus exacerbating other symptoms. The pain may also respond to step 2 and/or step 3 analgesics, but these drugs are often renally excreted, making the risk of adverse side effects and toxicity higher.
Other Complications:
Profound fatigue as renal function deteriorates can markedly affect quality of life. Advice
about adaptations in the house, and other approaches to saving energy, such as having a
bed downstairs and the use of commodes can be helpful.

Oedema of limbs and ascites may develop. This needs to be actively managed if
complications are to be avoided. Management includes good skin care, avoiding additional
trauma to the affected leg(s), elevation of the affected limbs, aggressive treatment of
superficial infections, and maximising cardiac function.

Weight loss and altered body image. Can be profound and can cause real problems for
the patient and their family, particularly as anorexia may make meal times a real battle
between patient and carers. The strict renal diet most patients follow when having dialysis
can also cause conflict in the terminal phase. There is a fine balance between maintaining
electrolyte balance and being able to enjoy food and have a reasonable quality of life.

Altered taste and anorexia are common. Good oral hygiene and management of dry
mouth may help. Carers may find it helpful to talk through different ways of encouraging
the patient to eat, such as freezing supplement drinks to make lollipops, making small
meals frequently etc

Nausea and vomiting can be persistent and difficult to control. Specialist advice is often
needed and drugs may need to given subcutaneously. Small frequent meals may
improve the pattern of vomiting.

Respiratory tract secretions can be troublesome, particularly as the patient deteriorates.
Treating infections with antibiotics can reduce the viscosity of secretions and so relieve
distress. Nebulised normal saline can moisten airways, making it easier for patients to
expectorate sputum/secretions. Oral mucolytics can sometimes help.
Issued August 2002. Revised and rewritten July 2009 Key points in Palliative Care of End Stage Renal Disease

Issued August 2002. Revised and rewritten July 2009 Palliative Care of Patients with End Stage Cerebro-vascular Disease
General Comments
The clinical course tends to be very variable, but the end stage is usually characterised by
increasing drowsiness, deteriorating physical and mental function and further strokes. The
time frame can be highly variable. This uncertainty and the profound fatigue experienced
by both patients and their carers’ causes considerable distress. Patients, their families and
the professionals involved in their care may find it hard to recognise and accept that a
patient is entering the terminal phase, as the patient may have survived a number of life
threatening cerebral episodes previously. Sudden death is common.

Specific pain complexes
 Generalised aches, particularly of limbs due to impaired circulation and
immobility. These may vary in location and intensity, are often worse at night, on
exertion and when a limb is moved. They may respond to simple analgesics such
as paracetamol, but may need opioids in some cases. Follow the analgesic ladder.
 Headaches are often multifactoral and can be difficult to control. Follow the
analgesic ladder. If there is evidence of hydrocephalus, neuro-surgical referral for a shunt may be appropriate.  Ischaemic pain, both cardiac and peripheral due to impaired circulation. This
may respond to regular opioids. For lower limb pain, lumbar sympathectomy may help in some cases.  Meningeal irritation can occur after multiple strokes and this may produce
photophobia as well as neck stiffness. This may respond to NSAIDs and/or oral
steroids.

Other complications
 Dysphagia due to damage in the neural mechanisms that control swallowing often
means that feeding gastrostomies are needed to maintain nutrition and aid with the administration of medication as the oral route may not be available. There may be ethical dilemmas towards the end of life particularly with regard to the administration of feeds in the last days of life.  Difficulties with articulation and speech production are common. The quality of
the voice may change significantly and make the patient self-conscious. Difficulty
swallowing saliva may make drooling a problem. All these problems need the
regular input of specialist speech and language therapists. Communication aids
may be needed to enable a patient to express their needs and preferences.
 Disability with impaired mobility, incontinence and personality changes mean that
patients often need intensive multi-disciplinary support and rehabilitation for a
period of time
 Constipation is not uncommon due to immobility and poor diet. This can lead to
overflow diarrhoea in some individuals. Regular oral laxatives and in some cases regular rectal laxatives may be needed.  Altered body shape, due to paralysis and subsequent immobility can lead to
 Epileptic fits are common, but not universal. They may be difficult to manage and
advice from neurologists may be needed to ensure adequate control using anti-
convulsant medication.
 Social and psychological issues are common. Many patients undergo personality
and behaviour changes after their strokes which can cause considerable stress to carers, especially if the patient becomes aggressive or dis-inhibited. Issued August 2002. Revised and rewritten July 2009  Depression is a common feature. Relationship problems are not uncommon.
Patients often become socially isolated as they feel different and become reluctant
to go out.
 Swelling of paralysed limbs. Management includes good skin care, avoiding
additional trauma to the affected limb(s), elevation of the affected limbs, aggressive treatment of superficial infections, and maximising function where possible.
Key points in Palliative Care of End Stage Cerebro-vascular Disease

Issued August 2002. Revised and rewritten July 2009 Palliative Care of Patients with End Stage Dementia
General Comments
The clinical course can be very variable as dementia is a clinical syndrome rather than a
specific disease. It can be difficult to recognise the end stage of the process, but it is
usually characterised by an increasing reluctance to eat or drink, growing fatigue, increased
susceptibility to infection, worsening cognitive function and deterioration in physical
capabilities. The severe cognitive impairment suffered by patients makes assessment
difficult, which may result in the under- treatment of symptoms such as pain. Careful
assessment, using specific tools designed to be used with cognitively impaired patients, is
key to effective symptomatic control such as the Abbey pain scale. Issues around hydration
and nutrition may complicate the approach to palliation in end stage dementia. Families
and carers are frequently exhausted by the long course of deterioration and may find it hard
to recognise when to stop seeking active treatment for their loved one. Discussions around
avoiding inappropriate and distressing hospital admissions need to be handled with
sensitivity.
Mental Capacity Act (2005) is underpinned by 5 key principles: a presumption of capacity,
support for individuals to make decisions for themselves when they can, the right to make
decisions that may seem eccentric or unwise to others, patients rights and freedoms must
be restricted as little as possible and that all acts done or decisions made on behalf of a
person must be in their best interests. Some people with dementia may retain some
capacity and it is not acceptable that a person lacks capacity based on their diagnosis, age
or behaviour alone. Many patients with dementia will lack capacity because they cannot
understand, retain, use and weigh information sufficiently to make a decision about their
care. It is essential to ensure that a person has been enabled to communicate their wishes
by any appropriate means available.
When a person is deemed as lacking capacity then carers must act in the person’s best
interests, taking into account past wishes, relevant written statements, the person’s beliefs
and values. All decisions about care should taken in a multi professional setting, with the
family and carers fully engaged at every point. Ultimately the care team must act in the
best interests of the patient, balancing the risk/benefit of any decision made. If a there is
conflict with the family about what is in the patient’s best interests legal advice may be
needed. (For further information see guidance on Mental Capacity Act)
Specific pain issues
 Limb contractures or muscle spasm may occur, particularly if there is loss of muscle
tone which requires that the patient be nursed in bed. Such pain is evident on
movement, and can be treated with a mixture of analgesics (following the analgesic
ladder) and anti-spasmodics. If oral medication cannot be tolerated or maintained,
medication can be given rectally, transdermally or subcutaneously.
 Generalised aches due to lack of movement and general debility. These may vary in
intensity and are often worse on waking. They may respond to simple analgesics such
as paracetamol, but may need weak opioids in some cases. Follow the analgesic
ladder.

Other Complications
Anorexia and dehydration occur as the patient increasingly declines oral input. Good
oral hygiene can help and patients will often tolerate crushed ice, especially if it is
flavoured with a preferred taste. Relatives and carers can be encouraged to offer small
amounts of easily ingested foods such as chocolate mousse. Many dementia patients have
a preference for sweet foods.
Issued August 2002. Revised and rewritten July 2009 Increased agitation may be symptomatic of pain or discomfort. Careful assessment of
physical status should be undertaken to exclude a treatable cause. Agitation can be treated
with an anti-psychotic such as haloperidol. Should the problem persist seek specialist
advice.
Pressure sores can occur due to incontinence, lack of voluntary movement, and increased
frailty, poor diet and incontinence. Muscle spasm and a patient’s inability to comply with
change of position can further compound the problem. Referral to the specialist tissue
viability services is advised.
Constipation due to poor nutrition and hydration, and lack of movement is common. If
constipation is a recurrent problem laxatives containing both a stool softener and bowel
stimulant should be available for regular usage.
Key Points in Palliative Care of End Stage Dementia Patients

General Comments
Issued August 2002. Revised and rewritten July 2009
Palliative Care of Patients with End Stage Motor Neurone Disease.
General Comments
Motor neurone disease is a relatively uncommon neurological condition which can affect
adults from their early 20s to the 70s. In the majority of cases it is relentlessly progressive
with a prognosis of two years or less from the point of diagnosis. Diagnosis can be difficult
as the initial presentation can be subtle. Patient and carers may feel that there has been a
delay in diagnosis which may add to their emotional distress. There is no effective
treatment available although Riluzole may slow its progression. There are two main forms
of presentation. One type presents with mainly bulbar motor problems such as dysphagia,
aspiration and/or poor speech articulation. The second type presents with motor problems
in the distal limbs either arms or legs. The initial problem may be a foot drop, loss of grip
strength, change in handwriting or difficulty the leg giving way. In both cases the
presenting problems progress with other muscle groups becoming involved. Visible muscle
fasciculation usually develops late. The end stages are characterised by increasing
fatigue, profound muscle weakness including the respiratory muscles, profound cachexia,
loss of appetite and increasing drowsiness.
From the point of diagnosis it is essential to ensure access to appropriate equipment to
help the patient can remain as independent as possible for a long as possible. Timing the
introduction of equipment can be difficult as patients may not wish to be reminded that they
will inevitably deteriorate at some point, but using equipment early is important because
time is short and it may help to maintain function for longer.
There are a number of ethical dilemmas that arise at the end of life. These include the
use of feeding tubes as the ability to swallow fails, (or swallow safely), and the role of non
invasive ventilation when respiratory muscles start to fail.
Specific pain complexes
 Muscle spasm may occur. Such pain may be worse on movement and may be
difficult to treat. It can be treated with a mixture of analgesics (following the
analgesic ladder) and anti-spasmodics. If oral medication cannot be tolerated or
maintained, medication can be given rectally, transdermally or subcutaneously.
 Generalised aches due to lack of movement and general debility. These may vary
in intensity and are often worse on waking. They may respond to simple analgesics
such as paracetamol, but may need weak opioids in some cases. Follow the
analgesic ladder.
Other Complications
 Breathlessness is common due to respiratory muscle weakness and can be very
distressing for patients and carers. Give clear explanations of what is happening.
There is often a fear that the person may choke to death or literally be unable to take
their next breath. Ensure that practical measures such as sitting the patient up,
opening windows and using fans have been considered. Treat reversible causes
such as infection where appropriate. Oxygen therapy should be used with care and
under the guidance of a respiratory physician or other specialist. Regular doses of
short acting oral morphine (2.5 – 5 mg) every 2 - 4 hours may decrease the
sensation of breathlessness. Panic and anxiety are frequently associated with
breathlessness and may be helped by simple relaxation techniques. A low dose
of an anxiolytic such as diazepam may be helpful. In some cases, especially if
respiratory muscles fail early in the disease course non-invasive ventilation
(NIPPI) may be appropriate.
Issued August 2002. Revised and rewritten July 2009  General debility due to progressive muscle weakness is severe. Patients often
have major problems with sitting posture. A particular problem occurs with the neck, with patients loosing the ability to hold up their heads. Often they are unable to wear a neck support making feeding and communication even more difficult.  Dysphagia due to muscle weakness and inco-ordination of the swallow reflex
means that patients may struggle to maintain an adequate nutritional intake. In
addition there is a high risk of aspiration in some patients. Feeding gastrostomies
may be needed to maintain nutrition especially as these patients have a high
metabolic rate and so loose weight quickly exacerbating the muscle wasting. They
may also aid with the administration of medication. There may be ethical dilemmas
towards the end of life particularly with regard to the administration of feeds in the
last days of life.
 Difficulties with articulation and speech production are common. The quality of
the voice may change significantly and make the patient self-conscious. Difficulty
swallowing saliva may make drooling a problem. Specialist advice may be needed.
For some local botox injections into the salivary glands may be helpful. All these
problems need the regular input of specialist speech and language therapists.
Communication aids may be needed to enable a patient to express their needs
and preferences.
 Depression is a common feature as inevitable progression of muscle weakness
robs the patient of their ability to function whilst their mental capabilities remain
unaffected. Relationship problems are not uncommon. Patients often become
socially isolated.
Key Points in Palliative Care of End Stage Motor Neurone Disease
 Ethical dilemmas  General debility Issued August 2002. Revised and rewritten July 2009 Palliative Care of Patients with end stage Multiple Sclerosis
General Comments
Multiple sclerosis is a relatively common neurological condition which has a highly variable
relapsing and remitting course over many years. The diagnosis can be hard to make as
the presentation is variable and often subtle. Common presenting symptoms include
persistent numbness and tingling in the distribution of a nerve, temporary loss of vision,
intermittent weakness of a limb often in the early thirties. For many patients the course is
fairly slow with function being well maintained over many years. For others the course is
more aggressive with rapid loss of function in a matter of a few years. It often affects
younger adults who may have young families creating complex social problems.
Recognising the end stages of MS is very difficult. Patients can survive for many years
even when bed bound and quadriplegic, but it is usually characterised by increased
susceptibility to infection, worsening cognitive function and deterioration in any remaining
physical capabilities. The severe cognitive impairment suffered by most patients makes
assessment difficult, which may result in the under- treatment of symptoms such as pain.
Careful assessment, using specific tools designed to be used with cognitively impaired
patients, is key to effective symptomatic control. Final illness may some form of infection
such as a chest infection or urinary tract infection.
Issues around appropriate treatment of infections, hydration and nutrition may complicate
the approach to palliation in end stage. Families and carers are frequently exhausted by the
long course of deterioration and may find it hard to recognise when to stop seeking active
treatment for their loved one. Discussions around avoiding inappropriate and distressing
hospital admissions need to be handled with sensitivity.
Specific pain complexes
 Muscle spasm may occur. Such pain may be worse on movement and may be
difficult to treat. It can be treated with a mixture of analgesics (following the
analgesic ladder) and anti-spasmodics. If oral medication cannot be tolerated or
maintained, medication can be given rectally, transdermally or subcutaneously.
 Generalised aches due to lack of movement and general debility. These may vary
in intensity and are often worse on waking. They may respond to simple analgesics
such as paracetamol, but may need weak opioids in some cases. Follow the
analgesic ladder.
 Neuopathic pain may occur especially in the limbs. They may require regular
neuropathic pain agents.

Other Complications
 Dysphagia due to damage in the neural mechanisms that control swallowing often
means that feeding gastrostomies are needed to maintain nutrition and aid with the administration of medication as the oral route may not be available. There may be ethical dilemmas towards the end of life particularly with regard to the administration of feeds in the last days of life.  Difficulties with articulation and speech are common. Communication aids
may be needed to enable a patient to express their needs and preferences.  Urinary incontinence is common as are problems with long-term indwelling
 Constipation is not uncommon due to immobility and poor diet. This can lead to
overflow diarrhoea in some individuals. Regular oral laxatives and in some cases regular rectal laxatives may be needed. Issued August 2002. Revised and rewritten July 2009  Severe disability and urinary incontinence make patients at high risk of pressure
sores. Muscle spasm and a patient’s inability to comply with change of position can
further compound the problem. Referral to the specialist tissue viability services is
advised.
 Personality changes and cognitive impairment mean that patients may be unable
to take part in decision making. It is important therefore that the patient’s known
wishes via an advanced directive be taken into account if available. All decisions
about care should taken in a multi professional setting, with the family and carers
fully engaged at every point. Ultimately the care team must act in the best interests
of the patient, balancing the risk/benefit of any decision made. If a there is conflict
with the family about what is in the patient’s best interests legal advice may be
needed.

Key Points in Palliative Care of End Stage Multiple Sclerosis

 Relapses and remissions  Severe disability  Communication issues  Feeding issues Issued August 2002. Revised and rewritten July 2009 Palliative Care of Patients with End Stage Parkinson’s Disease
General Comments
Parkinson’s disease is a slowly progressive, degenerative disease of the basal ganglia,
producing an akinetic-rigid syndrome, usually with a resting tremor and accompanied by
many other motor disturbances including a flexed posture, a shuffling gait and defective
balance. It tends to be a disease of old age. It is relatively easy to diagnose in most
patients, usually presenting with tremor, mask like face, rigidity, small spidery handwriting
and shuffling gait. Treatment with levodopa relieves symptoms and prolongs life. Over
time resistance to levodopa increases leading to the need for escalating doses.
Recognising the end stage of the disease can be difficult, but is usually associated with a
lack of response to drugs, increasing fatigue, increasing problems with balance and
prolonged episodes of freezing. Final illness may some form of infection such as a chest
infection or urinary tract infection.
Specific pain complexes
 Muscle spasm may occur. Such pain may be worse on movement and may be
difficult to treat. It can be treated with a mixture of analgesics (following the
analgesic ladder) and anti-spasmodics. If oral medication cannot be tolerated or
maintained, medication can be given rectally, transdermally or subcutaneously.
 Generalised aches due to lack of movement and general debility. These may vary
in intensity and are often worse on waking. They may respond to simple analgesics
such as paracetamol, but may need weak opioids in some cases. Follow the
analgesic ladder.

Other complications
 Dysphagia due to muscle weakness and inco-ordination of the swallow reflex
means that patients may struggle to maintain an adequate nutritional intake. In
addition there is a high risk of aspiration in some patients. Feeding gastrostomies
may be needed to maintain nutrition especially as these patients have a high
metabolic rate and so loose weight quickly exacerbating the muscle wasting. They
may also aid with the administration of medication. There may be ethical dilemmas
towards the end of life particularly with regard to the administration of feeds in the
last days of life.
 Difficulties with articulation and speech production are common. The quality of
the voice may change significantly and make the patient self-conscious. Difficulty
swallowing saliva may make drooling a problem. Specialist advice may be needed.
For some local botox injections into the salivary glands may be helpful. All these
problems need the regular input of specialist speech and language therapists.
Communication aids may be needed to enable a patient to express their needs
and preferences.
 Depression is a common feature as inevitable progression of muscle weakness
robs the patient of their ability to function whilst their mental capabilities remain unaffected.  Postural hypotension and poor righting mechanism can lead to recurrent falls,
leading to an increase risk of fractures and further debility.  Respiratory tract secretions can be troublesome particularly as the patient
deteriorates. Treating infections with antibiotics can reduce the viscosity of
secretions and so relieve distress. Nebulised normal saline can moisten airways,
making it easier for patients to expectorate sputum/secretions. Oral mucolytics can
sometimes help.
Issued August 2002. Revised and rewritten July 2009  Profound fatigue and freezing episodes can make caring for patients very difficult
and distressing. Specialist advice may be needed to help with moving and handling. Key Points in Palliative Care of End Stage of Parkinson’s Disease
General Comments
Issued August 2002. Revised and rewritten July 2009

Source: http://www.trinityhospice.co.uk/wp-content/uploads/2011/08/g_Trinity_Hospice_Key_Features_of_Palliative_Care_2010.pdf