Clin[ Otolaryn`ol[ 0886\ 22, 006Ð011

Palliative care in patients with cancer of the head and neck

K[ FORBESSt Gemma|s Hospice\ Leeds\ UK

Accepted for publication 10 June 0885

FORBES K ["0886# Clin[ Otolaryn`ol[ 22, 006Ð011

Palliative care in patients with cancer of the head and neck

Palliative care is the active total care of patients whose disease is not responsive to curative treatment[Patients with end!stage head and neck cancer have particular problems because of the impact of thetumour on the airway\ the upper gastrointestinal tract and the major senses[ Patients referred for palliativecare were identi_ed from the hospice database and the nature\ incidence and management of theirproblems\ and the role of the hospice in their care\ was reviewed from in!patient and home care notes andpatient!generated problem lists[ Thirty!two male and six female patients with a median age of 53 yearswere identi_ed[ Locoregional recurrence was present in 68) of patients[ Pain\ weight loss\ feedingdi.culties\ dysphagia\ respiratory symptoms\ xerostomia\ oral thrush and communication di.culties werethe major problems[ The management of each\ and of the terminal events encountered in the group\ isdiscussed[

Keywords head and neck cancer palliative care terminal care pain symptom control

Head and neck malignancies are uncommon\ making up 1) Little has been written about the palliative care of patientswith head and neck cancer[ This study outlines the populationof cancers in the United Kingdom and 4) of all cancers in

the Western world[0 They are important\ however\ because of of patients referred to a hospice for palliative care\ the nature\incidence and management of their problems and the role ofthe di.culty of treating them and the structures a}ected[

The prognosis for early tumours of the larynx\ oral cavity the hospice in the patient|s care[and oropharynx can be extremely good[ Irradiation can pro!duce 4!year recurrence!free rates of 78) and 4!year actuarial Patients and methodssurvival rates of 86) for early stage "T0# laryngeal tumours[1

More patients die of intercurrent illness than of their laryngeal Patients with a diagnosis of head and neck malignancy admit!ted to St Gemma|s Hospice over a 2!year period from 0889\primary[ However\ for patients with head and neck cancer

presenting with more advanced disease\ the cure rate falls to were identi_ed retrospectively from the hospice database[Hospice in!patient notes were reviewed for each admissionabout 24) overall[0

Patients may be referred for in!patient palliative care or and home care notes were obtained for those patients whowere discharged and died elsewhere[ Where death occurred athome support following surgery or radiotherapy given with

curative intent[ However\ the majority of patients have home or in another hospital\ the cause of death was obtainedfrom the patient|s general practitioner or from hospital notes[advanced or end!stage disease at the time of referral for pal!

liative care[ Due to tumour involvement of the upper aer! For each hospice admission\ drug charts were examined foranalgesic use and the symptom control and psychosocial prob!odigestive tract\ patients with head and neck cancer are often

highly symptomatic and their palliative care can be chal! lems recorded in the notes were examined[ Problem lists con!structed after discussion with the patient at their admission tolenging[ Caring for this group of patients within the hospice

setting may produce anxieties within team members who may the hospice were a useful source of information[ Particularreference was made to pain\ problems with maintaining anfeel that they do not have the specialist knowledge to look

after patients with feeding di.culties or airway problems[ airway\ communication and nutrition\ and the cause andmechanism of the patient|s death[ If patients were admittedCorrespondence] Dr K[ Forbes\ Consultant Senior Lecturer inmore than once\ data from their _nal admission werePalliative Medicine\ Department of Palliative Medicine\ Bristol

Oncology Centre\ Hor_eld Road\ Bristol BS1 7ED\ UK[ analysed[

006Þ 0886 Blackwell Science Ltd

007 K[ Forbes

a malignant wound or from a tracheostomy\ or both\ in 07Results"36)# patients\ and by local swelling and stridor in nine and

DEMOGRAPHIC DATA three patients respectively[ Five patients had pharyn!gocutaneous _stulae[ No patient had documented distant met!Thirty!eight patients with head and neck cancer admitted toastases^ however\ it should be noted that six patients diedthe hospice were identi_ed over a 2!year period[ There werewithout evidence of local recurrence[21 male and six female patients[ The median age was 53 yr

"range 30Ð76 years#[ The most common diagnosis was car!cinoma of the larynx\ occurring in 05 "31)# of the patients[

COMMUNICATIONCarcinomas of the ~oor of the mouth\ oropharynx\ hypo!pharynx and tongue made up a further 27)[ Patients grouped Communication was recorded as a problem for 19 "42)#by diagnosis are shown in Figure 0[ patients\ although just four patients could communicate only

Five patients "02)# had more than one primary tumour^ by writing[ An external vibrator was used by four patients\two of these patients had two separate head and neck primar! and the rest were able to manage by using a combination ofies[ The majority of the patients "42)# had been treated with slow\ clear speech and signing with the hands[a combination of surgery and radiotherapy[ Three patientshad also had chemotherapy[ Fourteen patients "26)# had

NUTRITIONreceived radiotherapy alone and one patient was too ill toreceive any active treatment[ Dysphagia and di.culties with feeding were identi_ed by 17

The median time from diagnosis to _rst hospice admission "63)# of the patients\ and weight loss was recorded as awas 19 months "range 0Ð41 months#[ Twenty!four patients problem for 29 "68)#[ The majority managed by taking a soft"52)# were admitted from home\ nine "13)# were admitted or sloppy diet\ and one patient had a gastrostomy insertedfrom hospital following radiotherapy\ and _ve "02)# were endoscopically during her _rst admission[ Eight patientsadmitted from other hospitals[ The median length of stay for received nasogastric feeding via _ne bore feeding tubes^ _veall admissions was 07 days "range 0Ð061 days#[ Of the 14 of these patients had recurring problems with tube blockage\patients who died during their _rst admission\ the median sometimes requiring replacement of the tube[ Four patientslength of stay was 03 days "range 0Ð18 days#[ The 27 patients had great di.culty with nutrition because of aspiration[were admitted a total of 44 times during the 2 years[ Sevenpatients accounted for 06 admissions\ two patients being

PAINadmitted on _ve occasions until their deaths in the hospice[

Thirty patients "68)# were recorded as having pain and 09DISEASE STATE

"15)# patients had neuropathic pain[ Strong opioids wereprescribed in 02 "23)# patients\ the remainder were prescribedLocal or locoregional recurrent disease was present in 29

"68)# of the patients[ This was associated with bleeding from a weak opioid[ Twenty!two "47)# patients took a non!ster!

Table 0[ Patients| symptoms ranked according to the presence or absence of a tracheostomy—–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––Tracheostomy n No tracheostomy n Combined*ÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐCommunication 04 Pain 04 Weight loss 29Feeding 04 Weight loss 04 Pain 29Weight loss 04 Dysphagia 02 Feeding 17Pain 04 Feeding 02 Dysphagia 17Dysphagia 02 Cough 02 Cough 14Bleeding 01 Candida 00 Communication 19Cough 01 Swelling 5 Bleeding 07Secretions 6 Bleeding 5 Candida 07Tracheostomy distortion 6 Communication 4 Swelling 8Oral candida 6 Social problems 4 Fistula 7Fistula 5 Secretions 3 Social 7Tracheostomy blockage 4 Aspiration 2 Tracheostomy distortion 6Swelling 2 Second primary 2 Second primary 4Stridor 2 Fistula 1 NG tube blockage 4Social problems 2 NG tube blockage 1 Aspiration 3NG tube blockage 2 Stridor 0Second primary 1Aspiration 0—–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

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Palliative care in head and neck cancer 008

oidal anti!in~ammatory drug and the 09 patients with neuro! should give symptom relief without producing signi_cant mor!bidity[ In patients with cancer of the head and neck\ radio!pathic pain were taking tricyclic antidepressants and:or anti!

convulsants[ therapy su.cient to produce tumour regression and so relievesymptoms will also produce painful mucositis and a drymouth3 and surgical intervention is often accompanied by

RESPIRATORY DIFF ICULTIES signi_cant dis_gurement and functional loss[4 Thus there isoften no consensus as to the best management of patients withIn 07 "36)# patients\ admission was precipitated by a chestadvanced head and neck cancer[ In one study\ 39 specialistsinfection[ Cough was troublesome for 14 patients "55)#\ eightasked to decide on the management of three theoretical pat!required repeated suction to clear secretions and four patientsients with advanced cancer of the head and neck selectedhad stridor[ Twenty of the 27 patients "42)# had a trach!their treatment modality according to the perceived aim ofeostomy[ Five of these patients had recurrent episodes oftreatment[ When the chance of in~uencing survival was small\airway blockage\ sometimes occurring as secretions blockingthey disagreed as to whether the aim of treatment should bethe tube\ at other times occurring when a tube could not beradical or palliative and subjective value judgements becamere!introduced after it was removed for cleaning[in~uential[5Other symptoms broken down according to the presence or

Patients are admitted to hospices and palliative care unitsabsence of a tracheostomy\ are listed in Table 0[for a variety of reasons\ which include admissions for painand symptom control\ respite care to allow carers to have abreak\ intermediate care and terminal care[ All of theseCAUSE OF DEATH

reasons may be relevant in the care of patients with head andTwo patients were alive at 4 years^ of the remainder\ the neck cancer[ The two patients who have survived for 4 yearsmedian survival from diagnosis was 11 months\ range 0Ð42 in this series were admitted for intermediate care\ i[e[ formonths[ The majority of the patients "42)# deteriorated convalescence following radical radiotherapy given with cura!gradually and their death was expected[ Nine other patients tive intent[ The majority of patients had end!stage disease at"13)# died of bronchopneumonia\ including all of those pa! the time of admission and were referred for terminal care[tients where aspiration was a problem[ Five patients with local Tumours of the head and neck are particularly importantrecurrence of their head and neck tumour also had evidence because of their impact on the airway\ the upper gas!of second primaries at the time of death^ three lung\ one trointestinal tract and therefore nutrition\ and the majoroesophageal and one prostatic[ Other causes of death\ which senses[ Communication plays an important role in good pal!were not directly related to the patients| malignancy\ included liative care[6 As their disease progresses\ patients often try tomyocardial infarction\ cardiac failure and small bowel volvu! continue communicating by speaking[ If this proves imposs!lus[ Two patients died during an episode of tracheostomy tube ible and they have to resort to arti_cially generated speech orblockage\ and one patient exsanguinated from local recur! the written word\ many of the subtleties of communicationrence at his tracheostomy[ Thirty!one patients\ 75) of those are lost\ at a time when good communication about di.cultwho died\ did so in the hospice\ three were at home\ one in a issues becomes increasingly important[ High tobacco andnursing home and one patient died in an ambulance on his alcohol consumption are associated with tumours of the headway to an acute hospital[ and neck\7 so that some patients will have led chaotic lives[

These patients might not _t easily\ therefore\ into the modelsof care o}ered to them[ They thus provide a challenge to theDiscussiondelivery of good palliative care and demand ~exibility in thoseproviding that care[The World Health Organization has de_ned palliative care as

{the active total care of patients whose disease is not responsive The patients studied were highly symptomatic\ having amedian of six symptoms included on their problem lists "rangeto curative treatment|[ Control of pain\ of other symptoms\

and of psychological\ social and spiritual problems\ is para! 1Ð01 symptoms#[ Previous studies have found pain\dysphagia\ airway obstruction\ fungating wound and mucosalmount[ The goal of palliative care is achievement of the best

quality of life for patients and their families[ Many aspects of dryness to be the major problems in patients with head andneck cancer[8\09 In this series of patients\ pain\ weight loss\palliative care are also applicable earlier in the course of the

illness in conjunction with anti!cancer treatment|[2 feeding di.culties\ dysphagia\ respiratory symptoms\ xero!stomia\ oral thrush and communication di.culties were thePatients with cancer are often treated {radically| with cura!

tive intent or {palliatively| with the aim of prolonging life or major problems[ Other problems included _stulae and bleed!ing from local recurrence[improving quality of life[ Patients with cancer of the head

and neck challenge these traditional concepts[ Many clinical It is estimated that two!thirds of patients with far advancedcancer have signi_cant pain[00 Patients with advanced canceroncologists do not believe palliative radiotherapy for head

and neck cancer is possible[ An ideal palliative treatment often have more than one pain and the underlying cause of

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019 K[ Forbes

each of these pains might be di}erent[ Nociceptive pain\ which gastric tube passed[ Only one!quarter of the patients in theseries had nutritional support via a nasogastric tube or gas!is usually described as aching\ occurs when nociceptors in

the skin and deeper tissues are activated[ This pain usually trostomy[ The ethical and legal issues around nutritional sup!port continue to be debated05 and are beyond the scope of thisresponds to opioids[ Damage to peripheral or central nerves

due to surgery or radiotherapy\ or by compression or invasion paper^ however\ decisions about nutritional support in thesepatients were decided\ in discussion with the patient\ by weigh!by tumour\ can lead to neuropathic pain[ Because of the site

of the primary tumour or of local recurrence\ patients often ing the possible bene_ts against the burdens[ For some pat!ients possible burdens included transfer back to an acute hos!have both nociceptive and neuropathic components to their

pain[ Other studies of patients with head and neck cancer pital for replacement of a dislodged nasogastric tube underdirect vision\ because anatomical distortion by tumour meanthave reported the incidence of pain to be between 49) and

74)\8\09 65) of pain being nociceptive and 12) that replacement on the ward was impossible[ One patientwas referred for insertion of a percutaneous endoscopic gas!neuropathic[02 The incidence of pain of 68) in this study is

in broad agreement with these studies\ as is the 15) incidence trostomy06 during her stay in the hospice[ All of the patientswith nasogastric tubes arrived at the hospice with them alre!of neuropathic pain[ All of the patients who had pain required

an opioid drug^ 32) were taking strong opioids\ and the ady in place[ Whilst discussion occurred about possible meansof nutritional support\ it was unlikely that invasive measuresremainder were taking weak opioids\ either paracetamol and

codeine or paracetamol and dextropropoxyphene combi! would be initiated once the patient was admitted to thehospice[nations[ The strong opioid was usually given as 3!hourly liquid

morphine orally or nasogastrically\ or diamorphine sub! Many nurses are distressed by caring for patients with tra!cheostomies[07 This led to a reluctance to admit patients withcutaneously if there was complete dysphagia and no alter!

native route of administration[ airway problems to the hospice as sta} felt that they didnot have the specialist knowledge to manage patients withNeuropathic pain can be di.cult to treat\ and often

responds poorly to opioids[ Adjuvant analgesics are used in compromised airways or tracheostomies[ This anxiety is notunfounded[ In this group of patients the airway can bethe management of neuropathic pain when response to

opioids is poor[ The groups of drugs which have been used in compromised by retention of secretions in a tracheostomytube or by tumour encroaching into the stomal lumen[ Wherethis context include tricyclic antidepressants\ anticonvulsants

and oral local anaesthetic agents[03 Carbamazepine has been local recurrence of tumour is progressing rapidly it can appearthat the stomal lumen has altered each time that the tra!shown to be e}ective in the management of trigeminal neur!

algia in controlled trials\ particularly for the lancinating cheostomy outer tube is removed for cleaning\ so that theimpression is that the tube is {coring out| a path through theelement of the pain\04 and therefore often is used as the drug

of _rst choice in the management of pain in head and neck tumour[ Most of the patients that hospice sta} look after willhave local recurrence in relation to their stomas\ and so thecancer[ It commonly causes sedation\ plus dizziness and

unsteadiness[ Often patients with head and neck cancer are sta} never gain experience in managing normal stomas[ Infor!mation and training could improve this situation\ although itelderly and frail and our experience is that carbamazepine

causes intolerable side!e}ects at doses su.cient to improve has been suggested that better patient care can be achieved byapplying pre!existing knowledge of fundamental principles[07pain[ The analgesic policy of the hospice was to use a tricyclic

antidepressant\ usually amitriptyline\ when the patient had Sta} visiting the patient in hospital and carrying out a super!vised tracheostomy tube change prior to the patient|s transferneuropathic pain described as constant\ burning or tingling\

and to use an anticonvulsant when the history was of lan! has proved a useful way of transferring skills and improvingpatient and sta} con_dence[cinating pain[ Sodium valproate was usually chosen over car!

bamazepine because of its lesser side!e}ects[ Fifty per cent of The patient|s transfer letter or the admission notes seldomindicated the stage of a patient|s disease\ whether the aim ofthe patients also took a non!steroidal anti!in~ammatory drug[

Other measures to improve pain control included cort! previous treatment was curative or palliative\ or if a patienthad an end tracheostomy so that aspiration was impossibleicosteroids\ given to reduce swelling and therefore pain due

to pressure e}ects\ and transcutaneous electrical nerve stimu! unless a malignant _stula had developed[ The two patientswho had procedures which meant they undoubtedly had endlation[

Tumour involvement of the upper gastrointestinal tract can tracheostomies\ were not aware that it was impossible forthem to aspirate oral contents\ as anxiety about aspirationlead to poor nutritional intake because of deterioration in

taste or smell\ inability to chew or swallow\ the presence of was mentioned in their initial problem list[ Obviously suchinformation is vital for planning patient care\ particularly infungating tumour or loss of appetite[ Patients often try to

retain normality and the pleasure of eating by taking soft food deciding whether aggressive investigation and treatment ofintercurrent illness is appropriate[and supplements orally[ Despite the fact that four patients

had severe di.culties with feeding because of aspiration\ all Five patients had repeated episodes of tube blockage and:orinability to replace the tracheostomy outer tube and 00 pat!preferred to continue oral intake rather than have a naso!

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Palliative care in head and neck cancer 010

ients had repeated episodes of bleeding from their stoma orfrom local recurrence[ A plan to manage the situations whichwere not easily resolved was discussed with the patients\ theirrelatives and all sta}[ All patients agreed to have a sub!cutaneous dose of the benzodiazepine\ midazolam\08 and forfurther suction to be carried out and the tube replaced oncethey were sedated and their respirations were less laboured[Midazolam was chosen as it has a rapid onset\ a short durationof action\ and produces retrograde amnesia\ so that patientsmight be spared memories of distressing events[ If it provedimpossible to clear the airway or if dressing changes andlocal pressure did not slow brisk bleeding\ sedation would becontinued to avoid patient distress[

Even patients presenting with advanced head and neck can!cer have an overall cure rate of 24)[0 Ninety!_ve per cent ofthe patients referred to the hospice died within 4 yrs\ so thatthis study represents a selected group of patients withadvanced head and neck cancer[ There was a perceptionamongst hospice sta} that this group of patients usually haddi.cult deaths[ All of the sta} could remember patients who Figure 0[ Patients grouped by primary diagnosis of head and neck

cancer[ n � 39 as two patients had two head and neck primaries[had died with acute airway obstruction\ or who had exsangui!� larynx "28)#\ � ~oor of mouth "02)#\�� oropharynxnated from a stomal or local neck recurrence[ In this series

"09)#\ � hypopharynx "7)#\ �� tongue "7)#\ �� tonsil65) of deaths were expected\ in that patients deteriorated"4)#\ Ž� other "06)#[

gradually or developed bronchopneumonia\ and the symptommanagement of these patients during their terminal phase wasnot di.cult[ Three patients died of myocardial infarction or Both patients and sta} anticipate acute and di.cult situ!acute left ventricular failure\ and _ve patients had second ations leading to the patient|s death[ This study suggests thatprimary tumours[ Cardiovascular deaths and second pri! these situations are unusual and that usually they are precededmaries are not unexpected in an older population su}ering by {herald| events\ so that a management plan can be discussedfrom a group of tumours usually related to heavy smoking[ before the emergency occurs[ Most patients| deaths can be

Three patients had deaths directly related to tumour recur! predicted\ so that many of the skills required are those necess!rence[ Two patients died with acute airway obstruction and ary in caring for any dying patient[one patient exsanguinated from local recurrence at his tra! The majority of patients with head and neck cancer havecheostomy[ Each patient was sedated using a short acting advanced disease at the time of referral for palliative care\ andbenzodiazepine and when the situation proved irreversible\ many will die during their _rst admission to a palliative caresedation was continued for the short period until the patient|s unit[ Most of the remainder die eventually in the unit\ re~ect!death\ either by using repeated injections as necessary or set! ing the di.culty of caring for these highly symptomatic pat!ting up a syringe driver delivering a constant dose of mid! ients at home\ and the relevance of a palliative care unit in theazolam subcutaneously[ These patients all had episodes of continuing and terminal palliative care of these patients[tube blockage or bleeding prior to their terminal event and soa management plan had already been discussed with the pati!

Referencesent and his family\ where relevant[

0 TOBIAS J[S[ "0883# Cancer of the head and neck[ BMJ 297\ 850Ð855

1 KAPLAN J[M[\ JOHNS M[E[\ CLARK D[A[ + CANTRELL R[W[ "0873#Conclusion Glottic carcinoma] the roles of surgery and irradiation[ Cancer 42\

1530Ð1537The provision of good pain and symptom control and psy! 2 World Health Organization "0889# Cancer Pain Relief and Pal!chosocial care is often di.cult because of the problems of liative Care[ Technical Report Series 793[ World Health Organ!

isation\ Genevacommunication in patients with head and neck cancer and the3 BEUMER J[\ CURTIS T[ + HARRISON R[E[ "0868# Radiation therapyperception of sta} that they do not have the necessary expert!

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disease state and the aims of treatment given at the time of 4 KRAUSE J[H[\ KRAUSE H[J[ + FABIAN R[L[ "0878# Adaptation toreferral would improve decisions about the best management surgery for head and neck cancer[ Laryn`oscope 88\ 678Ð683

5 MATHER E[J[ + JEFFERIS A[F[ "0889# Decision making in advancedof individual patients[

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011 K[ Forbes

cancer of the head and neck] variation in the views of medical 02 VECHT C[J[\ HOFF A[M[\ KANSEN P[J[\ DE BOER M[F[ + BOSCH

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03 PORTENOY R[K[ "0882# Adjuvant analgesics in pain management[cators identi_ed by families[ J[ Pall[ Care 4\ 10Ð177 Cancer Research Campaign "0882#[ Oral and pharyngeal cancer In Oxford Textbook of Palliative Medicine "Doyle D[\ Hanks

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