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Newsletter Sept 2004 Issue No.2Hong Kong Society of Palliative Medicine

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A mother's experience of caring her child with a life limiting illness

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The Hong Kong Palliative Care Symposium:A Panoramic View of Palliative Care in Hong Kong

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HKSPM Newsletter Sept 2004 Issue 2 : p 2

HKSPM 2003 - 2004Chairman

Dr. Tse Man Wah, Doris

Vice-Chairmen

Dr. Lau Kam Shing

Dr. Anne B Thorsen

Honorary Secretary

Dr. Wong Kam Hung

Honorary Treasurer

Dr. Rebecca Yeung

Council Members

Dr. Lam Kwok Kwong

Dr. Lo See Kit, Raymond

Dr. Sham Michael

Dr. Yuen Kwok Keung

Dr. Tse Chun Yan

Dr. Leung Shing Fai

Dr. Liu Shao Haei

Dr. Kwok Oi Ling

Dr. Chan Kin Sang

Editorial Board

Dr. Lau Kam Shing

(Chief Editor)

Dr. Rebecca Yeung

Dr. Anne Thorsen

Dr. Ng Kam Hung

Dr. Tse Man Wah, Doris

Honorary Advisors

Dr. Derek Doyle

Prof. Ilora Finlay

Sister M. Gabriel O’Mahony

Dr. YF Poon

Prof. Sir David Todd

Prof. Rosie Young

Dr. Vincent Tse

Honorary Legal Advisors

Chui & Lau Solicitors

Honorary Accountant

Chu & Chu Certified Accountants

Guest Editorial

Dr. Chan Kin-sang,Guest Editor

Front & back pages: Drawings by Ray Cheung

Dear Colleagues,

This issue of newsletter is specially dedicated to the collectionof articles which were presented in the first local Palliative CareSymposium in Hong Kong : "A Panoramic view of Palliative Care inHong Kong", which was held on 26th June, 2004.

For those who had attended this historical local symposiumprobably recognized four special features of this symposium: (1) allspeakers were from local institutions, (2) the content covered boththe art and science of palliative care, (3) the first time in Hong Kongwhen all local palliative care organizations came together ascollaborators, (4) the response of enrollment was overwhelming withmore than a thousand applicants, of whom many of them were non-palliative care workers.

The symposium is a success, but more than that, it alsoportraits the successful laying of foundation of palliative care inHong Kong. The experiences shared by our local speakers signifythat palliative care in Hong Kong has entered the stage ofmaturation. For everything under the sun, there is a time.Nevertheless, one would like to recapitulate the efforts that we hadcultivated in the past days, by these we come to our being today.

Palliative Care is a collection of encountered life stories.Likewise, our newsletter is a collection of Palliative Care history.One fine day in future, while we recall, we will treasure the articlesand this issue of newsletter.

Wishing every one of us a blessed life while we continue tobless others.


With advances in science of medicine, we livebetter and we live longer, but are we dying in abetter way? If not, what is wrong with medicinethen?

Dated back to 400 BC, Hippocrates defined arealistic physician and ideal physician in the ‘Art ofMedicine’. "A realistic physician," wroteHippocrates, "is one who should recognise theuntreatable, refrain from treating the untreatable,reduce the severity of illness, and relieve patient’ssufferings. An ideal physician is one who is surelynot all-knowing, not all-powerful; but simply a goodperson and a skillful healer." These are amazingwords of wisdom, but it seems now the art ofmedicine has lost its glamour. For too long inmedical history, human as a whole person, hasbeen dichotomised to body and mind; and the bodyis left to the science of medicine. We then keep onfixing the body, with little awareness of what ishappening to the whole person. It is the wholeperson that experiences the suffering, not the body.A whole person is a spiritual being.

Therapeutic role of palliative care workersDr Tse Man-wah, DorisChief of Service, Department of Medicine & Geriatrics and ICU,Caritas Medical Centre, Hong Kong.Correspondence: [email protected]

Introduction

Unless we recognise that, we will fail torecognise the sufferings of our patients, and fail torecognise spiritual care as part of our care. Deathand dying are depersonalised. P. Hill and D. Shirleysay: "Even care for the dying is ‘system by system’,‘organ by organ’." David Thomasma describes themodern dying process as one which "differentservices are stacked up, waiting to attend the dying".

Man yearns for good death, and a good deathbrings consolation to both the living and the dying.The death of Ronald Reagan has impressed theworld as such – dying in peace at home,surrounded by his family – an uncommonoccurrence at this time when dying is highlyinstitutionalized. If you think this is a death of thecelebrities, Dr. Bernard Lown, a renownedcardiologist, would tell you this is not necessarilythe case. His 96-yr-old mother died after futile CPRat home, despite his careful planning for a naturaland peaceful death. "While she was spared thesuffering, the indignity was inflicted on the living,"Dr. Lown wrote in The lost art of healing: Practicingcompassion in medicine, "The memory of her deathevokes pain and tears, but I weep more for what ishappening to my profession…"

Telling others about what palliative care workers are doing is no easy job; telling others about us astherapeutic is an even greater challenge. Many of you, either as audience or as speaker, may echo withProfessor David Clark:

"Yet, in print, in conferences, and in their daily clinical work, specialists in palliative care seem to lackclarity and confidence when defining precisely what they do and how it differs from other health care."

In modern medicine, specialists define themselves by the diseases, the organs, the pathology, andinterventions. On the other hand, palliative care is an area or specialty where there is no definite disease, nodefinite organ involvement, no definite pathology, and where only death is definite. There are questions thatothers would like to ask palliative care workers, as much as we would like to ask ourselves:

Can palliative care workers make a difference to the dying journey?Can therapeutic activities continue when cure is not possible?Can healing occur when death is inevitable?

What’s wrong with medicine? –The blessing of good death andthe pain of undignified death


The up rise of palliative care -Person, Suffering, Spirituality

There is a call for better care of the dying. Theup rise of palliative care is a response to suchcalling. The essence of palliative care, as I see it, isembedded in three words – person, suffering,spirituality. Palliative care should see patient as awhole person. Therefore, alleviation of sufferings,which is the experience of the patient as a person,should be the goal of care; and spiritual care shouldbe an integral part of palliative care (Fig. 1). Humanexists as a person, but ‘how you look’ can be verydifferent from ‘who you are’. Our patients come to uswith a diagnosis of incurable illness and varioussymptoms or medical problems, unless we areaware of their presence as a person, ourunderstanding of our patients will be limited at thislevel.

Knowing the nature of a person helps us tounderstand why he suffers as a patient and hisspiritual needs when facing death and dying. EricCassell describes a person in a simple topology. Aperson has a physical body, a pattern of behaviour,own roles and functions. A person has his pasts,and own life experiences. A person is in relationshipwith self and others. A person has a family, reflectsown cultural background, and is a political being.A person is a spiritual being and has a dimension of

transcendence. In the presence of serious illness,the integrity of the whole person is beingthreatened. This impending destruction of a wholeperson causes sufferings.

Daniel Sulmasy regards two conditions that arenecessary, though not sufficient, to define a human;they are the fundamental orientation towardstranscendence and "being-in-relationship".Suffering, as Daniel Sulmasy says, is part of natureof being human. Man suffers as long as human ismortal and finite. Mortality and finitude is a longforgotten message, but is brought to our awarenessby life threatening illness.

For a person facing own dying, the sources ofsuffering are many: multiple symptoms, loss ofimage, loss of role and function, loss of dignity,hopelessness, broken relationships, loss of will tolive, disconnectedness and meaninglessness.Patients may tell us that they have pain here andthere, they are no longer whom they used to be,they cannot be good mothers or fathers anymore,they feel lonesome or they do not want to live anylonger. It is the role of palliative care workers torecognise and identify these sufferings as patienttells us their history. Identification is the pre-requisite to alleviation of sufferings. (Fig.2)

Spirituality – a journey of searchingAs in suffering, the spirituality of an individual

can only be understood in his own framework, andby his own search. Because of this nature, one willfind it difficult to ‘define’ spirituality in a sentence.Kellehear proposes a theoretical model of spiritualneeds in palliative care, and identified transcendencein three areas as major dimensions of spiritualneeds. The three areas include the situational, themoral and biographical, and the religioustranscendence. Within this framework, the followingneeds are identified: social presence, havingpurpose and meaning, peace and reconciliation,forgiveness, closure, reunion, mutuality, hope,connectedness etc. It will be interesting to quote

Fig. 2The nature of suffering andsuffering as a personal experience

How a patient tells you...It hurts everywhere

I don't look the same nowI'm no longer a good fatherI can't do what I used to do

I am uselessI have no future

I haven't told them I'm sorryI would rather die

Nobody can understand meWhy do I have to suffer ?

.. what he is suffering frommultiple symptomsloss of imageloss of roleloss of functionloss of dignityhopelessnessbroken relationshipsloss of will to livedisconnectednessmeaninglessness

Fig. 1 The essence of palliative care

Patient as whole person

Suffering asexperience of a person

Spirituality aspart of a person

Alleviate suffering asgoal of care

Spiritual care aspart of care


another study of the essence of spirituality interminally ill Chinese patients by Chao et al. Resultsshowed four constitutive patterns, namelycommunion with self, with others, with nature, andwith higher being. In this framework, themesidentified included wholeness, self-identity, innerpeace, hope, gratitude, faithfulness, love,reconciliation, creativity and inspiration from nature.It is not difficult for one to identify commonalities inthese two studies. Seeking of self, searching formeaning and purpose, maintaining hope, peace andforgiveness are universal, irrespective of culture.

When many physical activities of our patientsslow down or cease because of progressiveweakness, active seeking or searching in mind maycontinue. What are they searching for? Whatmatters to a person when dying?

This is not an easy question to answer, nor couldI give one. Viktor Frankl, one who survived the Naziconcentration camp, recorded his story there in hisbook ‘Man’s search for meaning’. In the camp,prisoners were virtually facing death every secondof the day in a most unpredictable, helpless andundignified manner. Yet, Viktor Frankl survived inthe midst of sufferings. The book has illustrated theconvincing power of life stories, and his story hasillustrated man’s nature to search for meaning.Viktor Frankl developed his "logotherapy" based onthis. Recently meaning centred therapy has alsobeen studied for its effectiveness in advancedcancer patients. Vik

In this journey of dying, like many other journeys,it is the journey itself that keeps one movingforward, and not the destiny. In this dying journey,death is nothing new, only the discoveries along thejourney are new. This is a personal journey wherepalliative care workers cannot prescribe answers.We can only facilitate searching. Throughtranscendence to a wider landscape, patient derivesmeaning that is of personal significance andimportance. We cannot pretend or assume that weknow death better than our patients; after all, theyare nearer to death than us. The dying journey ofone is thus a lonely and unique experience.

The palliative care team and the individualmember

Palliative care workers are familiar with workingas a multidisciplinary team, and this is something sooften described as an important feature of palliativecare. The composition of the team though varies inlocal settings, consisted mainly of doctors, nurses,social worker, physiotherapist, occupational

therapist, clinical psychologist, counselor, pastoralcare workers, chaplain, dietitian, pharmacist andvolunteers. Their contribution has been recognized.A team is more than a collection of disciplines orskills; otherwise, it takes no time to form a team. Agood palliative care team may takes years andgenerations to build up. Some teams die beforethey mature. In a good team, effectiveness is morethan simple addition of members; roles of teammembers are overlapping rather than welldemarcated; and each member contributes more asa person than as own discipline.

The individual, the skills and the attitudeDifferent modalities and approaches are being

employed to address the sufferings of the patients,and their spiritual needs. Many of them are not justcommon practices, but also scientifically studied.Team members may have overlapping skills, but itis not difficult to identify the ‘territory’ when aspecific skill is required. For example, physiciansand nurses will focus more on symptom control,physiotherapist and occupational therapist onmaximising of function, pastoral care workers onreligious rituals etc. Skills are just instruments,however, and their application without the correctattitude could well be a mechanical task; and worstof all, only fulfilling self needs. In order for theencounter with our patients to be potentiallytherapeutic, attitude is more important than skills.By this I mean compassion, acceptance andawareness, which are not specific to any discipline,but as part of each team member as a person.Skills are, therefore, only instruments for delivery ofour inner self. (Fig. 3 & 4)

The Skills in the Person

Symptom controlMaximise function

Preserve dignityEmpower coping

Reframe hopeCreativity

Life reviewReconciliation

Religious ritualsMeaning seraching

CompassionAcceptanceAwareness

Fig.3 The therapeutic encounter and skills

"SKILLS are instruments for Delivery of inner SELF"


Compassion, awareness, acceptance

Compassion is more than sympathy andempathy. Compassion is an active process. DanielSulmasy elaborates the 3-step process ofcompassion as follows. It requires: firstly,recognition of the contents of suffering objectively;secondly, understanding the experience of sufferingsubjectively; and thirdly, helping the one who suffersby words and deeds actively.

Acceptance is of positive regard, and is non-judgmental. Acceptance is that of our patients hereand now, and of our limitations here and now.Acceptance is not just being sympathetic, or juststaying neutral. It is also not tolerating or giving up.

Awareness is an active process and is notpassive learning. It involves reflections with renewalof thoughts and not that of reinforcing the old ones.Awareness is that of our patient’s needs here andnow, and of our limitations here and now.

Without compassion, acceptance and awareness,our encounter with patients can be one that isoverwhelmed by boredom and we wither. On thecontrary, a therapeutic encounter is one that isnurturing and fosters self growth.

In this therapeutic encounter, we facilitate thesearching process though we have no straightforward answers. In the dying journey, we continuethe therapeutic activities though we could not bringalong cure. We initiate the healing process, thoughwe know that not all wounds could be healed. Weaccompany the dying, because we knowcompanionship never fails.

Conclusion

As I prepared the talk, I felt that life would beeasier for me if I regard dying as an ‘illness’, if I seesuffering as a ‘treatable’ symptom, and I call myselfa ‘medical specialist’. However, none of thesecommon terms in contemporary medicine coulddescribe what palliative care workers should bedoing. We tell others that we are special whenpeople cast doubt on what we are doing, butperhaps we are really not special at all. We areprivileged to be present in the dying process of ourpatients, and we are only the companions of thedying. We hope to make a difference to the dyingjourney, not so much as what we can do, but moreas who we are.

At the end of the day, you may still find palliativecare vague and blur to you. You may have a myopicfocus of palliative care that I fail to correct, but doyou actually have a myopic focus of death anddying that you fail to realise? Instead of goingfurther, may I lead you back to ancient times again -Hippocrates wrote:

"Life is short, art is long."

ReferenceDaniel Sulmasy. The healer’s calling. A spirituality forphysicians and other health care professionals. PaulistPress: New Jersey 1997.Eric J Cassell. The nature of suffering and the goals ofmedicine. 2nd edition Oxford University Press 2004.David Thomasma, J L Kisell, editors. The health careprofessionals as friend and healer. GeorgetownUniversity Press: Washington 2000.Bernard Lown. The lost art of healing: practicingcompassion in medicine. Ballantine Books: New York1999.Viktor E Frankl. Man’s search for meaning. PocketBooks: New York 1985.Cherny NI, Coyle N, Foley KM. Suffering in theadvanced cancer patient: a definition and taxonomy.Journal of Palliative Care 1994;10:57-70.Allan Kellehear. Spirituality and palliative care: amodel of needs. Palliative Medicine 2000;14:149-155.Chao C et al. The essence of spirituality of terminallyill patients. Journal of Nursing Research2002;10(4):237-245.

Fig.4 The therapeutic encounter and attitude

"ATTITUDE is more inportant than SKILLS"

The Skills in the Person

CompassionAcceptanceAwareness

Applying withoutcorrect attitude

Fulfilling self needsFulfilling expectations

Mechanicaljob

Therapeuticencounter


This update will cover four areas: episodic pain,neuropathic pain, management of opioid-inducedadverse effects, and psychosocial and existentialpain.

Episodic painAlthough the Expert Working Group of the

European Association for Palliative Carerecommended using immediate release oralmorphine for episodic pain, 1 measures with fasteronset of action would be useful, especially for moresevere episodic pain or pain emergencies.Intravenous morphine at a dose equivalent to 20%of the total oral daily dose has been evaluated.Eighty percent of patients achieved 50% or morereduction in the intensity of episodic pain within amean of 16.6 minutes. Adverse effects includedmoderate to severe nausea and vomiting,drowsiness and confusion.2 Intravenous morphine,however, requires slow injection, because of the riskof hypotension. Intravenous fentanyl, which doesnot induce histamine release and does not carry therisk of hypotension, might offer additional benefit.Moreover, fentanyl is more lipophilic and has aneven faster onset of action. Repeated adminis-tration of intravenous fentanyl every five minutes, ata dose equivalent to 10% of the total previous dailydose of morphine, was reported to be effective forpain emergencies. The procedure was safe; themajor adverse effect being slight somnolence.3

Other routes of administration have also beentried. Morphine gluconate is much more soluble inwater than morphine sulphate or hydrochloride, andcould be prepared at a concentration up to 20mg/0.1 ml. This has been given in the form of nasalspray to 11 cancer patients for episodic pain.Perceptible pain relief was achieved in 10, with painintensity significantly reduced, and the mean time ofonset of 2.1 minutes only.4

In addition to the dorsal root ganglia and peri-aqueductal grey area, opioids also act on peripheralnerves. Topical morphine and diamorphine hasbeen demonstrated to be effective in alleviating painin patients with painful skin conditions or sacral sorescompared to placebo.5-7 Morphine gargle has beenshown to be more effective than water in alleviating

pain from chemotherapy or radiotherapy-inducedstomatitis. It took on average only 28 minutes toachieve 50% or more reduction in pain, with themean duration of relief of 216 minutes. As a resultof the treatment, patients could take semi-solid orsolid food and required little supplementalanalgesics.8 It has also been demonstrated thatexcruciating bladder spasms resolved within hoursafter diamorphine 10 mg in 20 ml normal saline wasinstilled intravesically. The patient could bedischarged with reduced dosage of analgesics, toperform the instillation of diamorphine three times aday at home, with intermittent self-catheterization.9

Apart from morphine, intranasal ketamine(0.1 ml 10%) has also been shown to significantlyalleviate episodic pain compared with placebo.Onset of pain relief occurred within 10 minutes,lasting up to an hour. Adverse effects includedtransient change in taste, rhinorrhoea, nasalpassage irritation, and transient elevation in bloodpressure. None reported hallucinations.10

Neuropathic pain

Pathophysiological changes that result after nerveinjury include accumulation of sodium channels inthe peripheral nerve (peripheral sensitization),reduction of gamma-aminobutyric acid (GABA)inhibition of pain transmission, alteration in calciuminflux into the neuron, and increased activity ofglutamate receptors, in particular the N-methyl-D-aspartate (NMDA) receptors (central sensitization).Neuropathic pain could be alleviated by modulationof peripheral sensitization by use-dependentsodium channel modulators, such ascarbamazepine, phenytoin, mexiletine, flecainide,sodium valproate or tricyclic antidepressants. Theinhibitory pathways of pain transmission could bemodulated by opioids, serotoninergic agents suchas amitriptyline or paroxetine, as well as GABAagonists such as sodium valproate, clonazepam,gabapentin or baclofen.

Neuropathic pain could also be managed bymodulation of calcium channels with gabapentin, ormodulation of central sensitization with ketamine.Burst ketamine (100-500 mg/day by

Cancer pain updateDr MK ShamConsultant, Palliative Medical Unit, Grantham Hospital, Hong Kong.Correspondence: [email protected]


continuous subcutaneous infusion for three to fivedays) has recently been shown to be effective in thealleviation of refractory neuropathic as well assomatic pain. After cessation of ketamine, 24 of the29 patients maintained good pain control for amaximum of eight weeks.11

It would be more convenient to administerketamine by mouth, instead of subcutaneously.Orally administered ketamine undergoes extensivefirst-pass metabolism, resulting in lowconcentrations of ketamine but high concentrationsof norketamine in the blood and tissue. However, asnorketamine is also an NMDA receptor antagonist,the first-pass metabolism does not affect thepotency of the drug significantly. A conversion ratioof subcutaneous to oral ketamine of 1:1 has beenreported.12

The starting dose of oral ketamine has beenrecommended to be 0.5 mg/Kg three times a day.13

The effective dosage could be as low as 6 mg threetimes a day,14 or as high as 3.2 mg/Kg every sixhours.15 In one report from Macau, pain wascontrolled with oral ketamine 30-60 mg four times aday.16

While neuropathic pain has all along beenconsidered opioid-less-responsive pain, modestrelief has been demonstrated with morphine,oxycodone, fentanyl, levorphanol and tramadol, withimprovement in steady pain, paroxysmal pain andallodynia.17-20 Despite its NMDA receptorantagonist effect, methadone has not been shown tobe superior to morphine as first-line strong opioid forcancer pain, even though the proportion of patientswith neuropathic pain in the methadone and themorphine groups were similar.21

Management of opioid-inducedadverse effects

Opioid-induced adverse effects could be managedby treatment of the adverse effects, opioidsubstitution, use of opioid sparing drugs or neuraxialadministration of the opioids.

Treatment of adverse effectsIt has been shown locally that opioid therapy is a

major cause of delirium in advanced cancerpatients.22 Cholinergic projections in the brain areconsidered essential to maintaining the state ofconsciousness, awareness, attention and sleep-wake cycling. Hallucinations may occur withdisruption of the basal forebrain cholinergicpathways. Opioids have been demonstrated toinhibit cholinergic activity in multiple brain

regions, and opioid-induced sedation and deliriumhas been shown to improve with donepezil orphysostigmine.23-25

Opioid substitution

Another strategy in the management of opioid-induced adverse effects is opioid substitution. Afixed dose ratio conversion of morphine tomethadone has been recommended.26 However, ithas been demonstrated that the conversion ratiocould be highly variable in different groups ofpatients. If pain is not controlled, rapid increase inmethadone dosage may result in accumulation andoverdose because of the long plasma half-life.Local experience of the effective use of an adlibitum schedule has been reported. On the day ofconversion, oral morphine is discontinued. A fixeddose of methadone is given on request, calculatedas 1/12 of the total daily dose of morphine, up to amaximum of 30 mg, but not more frequently thanevery three hours. When the total daily dose isstabilized, it is divided to be given two to three timesa day.27

Opioid sparing agents

Various agents have been reported to haveopioid sparing effect, including acetaminophen,midazolam, ketorolac, parecoxib, and even music.One way to reduce the requirement of opioids is toreverse opioid tolerance. It has been demonstratedthat μ-receptor activation might initiate removal ofthe blockade of NMDA receptor by magnesium ion,eventually resulting in decreased responsiveness ofμ-receptors and opioid tolerance. This could bereversed by the NMDA receptor antagonist,ketamine. It has been shown that the requirementof methadone could be reduced from 240 mg/day to75 mg/day, by intravenous infusion of burstketamine 100 mg daily for 2 days, repeatedmonthly.28

Neuraxial administration of opioids

Systemic adverse effects could be minimized byneuraxial administration of opioids by the epiduralor subarachnoid route. Intra-cerebroventricularadministration of opioids has also been shown to beeffective, starting with a low dose, titrating upwards.Adverse effects included dizziness, sleepiness,fatigue and nausea. The requirement of nurses toperform the injection disrupted the privacy of thepatients. Intraventricular injection by the patients’family members, however, increased the risk ofinfection.29


Psychosocial and existential pain

The concept of total pain is well established.Pain has been demonstrated to be associated withanxiety, depression, hostility, anger, fear of futureprogression of pain, worry about pain, negativemood, lower quality of life score for psychosocialwell-being, decreased social activities, lower levelsof social support, reduced social functioning andlower resiliency of the social network.30

Existential pain, however, may have differentmeanings to different people. It has been shownthat 97.3% of chaplains, 65.8% of palliative carephysicians and 48.9% of pain specialists describedexistential pain as suffering that had no clearconnection to physical pain. Only 1% of chaplainsthought that in certain cases, strong existentialsuffering could be expressed as physical pain. Onthe other hand, 32% of palliative care physiciansand 32% of pain specialist considered thatexistential suffering could be a primary cause ofpain, and could reinforce physical pain that alreadyexisted. This carried an implication to treatment,suggesting the possibility of alleviation of existentialpain by analgesic therapy in combination withexistential support.31

References

1. Expert Working Group of the European Association forPalliative Care. Morphine in caner pain: modes ofadministration. BMJ 1996; 312: 823-6.

2. Mercadante S, Villari P, Ferrera P, Bianchi M, Casuccio A.Safety and effectiveness of intravenous morphine for episodic(breakthrough) pain using a fixed ratio with the oral dailymorphine dose. J Pain Symptom Manage 2004; 27: 352-9.

3. Soares LGL, Martins M, Uchoa R. Intravenous fentanyl forcancer pain: a "fast titration" protocol for the emergency room.J Pain Symptom Manage 2003; 26: 876-81.

4. Fitzgibbon D, Morgan D, Dockter D, Barry C, Kharasch ED.Initial pharmacokinetic, safety and efficacy evaluation of nasalmorphine gluconate for breakthrough pain in cancer patients.Pain 2003; 106: 309-15.

5. Twillman RK, Long TD, Cathers TA, Mueller DW. Treatment ofpainful skin ulcers with topical opioids. J Pain SymptomManage 1999; 17: 288-92.

6. Zeppetella G, Paul J, Ribeiro MDC. Analgesic efficacy ofmorphine applied topically to painful ulcers. J Pain SymptomManage 2003; 25: 555-8.

7. Flock P. Pilot study to determine the effectiveness ofdiamorphine gel to control pressure ulcer pain. J PainSymptom Manage 2003; 25: 547-54.

8. Cerchietti LCA, Navigante AH, Korte MW, Cohen AM, QuirogaPN, Villaamil EC, Bonomi MR, Roth BM. Potential utility ofthe peripheral analgesic properties of morphine in stomatitis-related pain: a pilot study. Pain 2003; 105: 265-73.

9. McCoubrie R, Jeffrey D. Intravesical diamorphine for bladderspasm. J Pain Symptom Manage 2003; 25:1-3.

10. Carr DB, Goudas LC, Denman WT, Brookoff D, Staats PS,Brennen L, Green G, Albin R, Hamilton D, Rogers MC,Firestone L, Lavin PT, Mermelstein F. Safety and efficacy ofintranasal ketamine for the treatment of breakthrough pain inpatients with chronic pain: a randomized, double-blind,placebo-controlled, crossover study. Pain 2004; 108: 17-27.

11. Jackson K, Ashby M, Martin P, Pisasale M, Brumley D, HayesB. "Burst" ketamine for refractory cancer pain: an open-labelaudit of 39 patients. J Pain Symptom Manage 2001;22:834-42.

12. Benitez-Rosario MA, Feria M, Salinas-Martin A. A retro-spective comparison of the dose ratio between subcutaneousand oral ketamine. J Pain Symptom Manage 2003; 25:400-1.

13. Kannan TR, Saxena A, Bhatnagar S, Barry A. Oral ketamineas an adjuvant to oral morphine for neuropathic pain incancer patients. J Pain Symptom Manage 2002; 23: 60-5.

14. Vielvoye-Kerkmeer APE. Clinical experience with oral ketamine.J Pain Symptom Manage 2000; 19: 3.

15. Broadley KE, Kurowska A, Tookman A. Ketamine injectionused orally. Palliat Med 1996; 10: 247-50.

16. Yung WTT. Ketamine: the introduction and clinical use in theHospice and Palliative Care Center of Kiang Wu Hospital.Hong Kong Society of Palliative Medicine Newsletter 2004; 1:26-7.

17. Dellemijn P. Are opioids effective in relieving neuropathicpain? Pain 1999; 80: 453-62.

18. Watson CPN, Moulin D, Watt-Watson J, Gordon A, EisenhofferJ. Controlled-release oxycodone relieves neuropathic pain: arandomized controlled trial in painful diabetic neuropathy.Pain 2003; 105: 71-8.

19. Rowbotham MC, Twilling L, Davies PS, Reisner L, Taylor K,Mohr D. Oral opioid therapy for chronic peripheral andcentral neuropathic pain. N Engl J Med 2003; 348: 1223-32.

20. Boureau F, Legallicier P, Kabir-Ahmadi M. Tramadol in post-herpetic neuragia: a randomized, double-blind, placebo-controlled trial. Pain 2003; 104: 323-31.

21. Bruera E, Palmer JL, Bosnjak S, Rico MA, Moyano J,Sweeney C, Strasser F, Willey J, Bertolino M, Mathias C,Spruyt O, Fisch MJ. Methadone versus morphine as a first-line strong opioid for cancer pain: a randomized, double-blindstudy. J Clin Oncol 2004; 22: 185-92.

22. Lam PT, Tse CY, Lee CH. Delirium in a palliative care unit.Prog Palliat Care 2003; 11: 126-33.

23. Slatkin NE, Rhiner M, Bolton TM. Donepezil in the treatmentof opioid-induced sedation: report of six cases. J PainSymptom Manage 2001; 21: 425-38.

24. Bruera E, Strasser F, Shen L, Palmer JL, Willey J, Driver LC,Burton AW. The effect of donepezil on sedation and othersymptoms in patients receiving opioids for cancer pain: a pilotstudy. J Pain Symptom Manage 2003; 26: 1049-54.

25. Slatkin N, Rhiner M. Treatment of opioid-induced delirium withacetylcholinesterase inhibitors: a case report. J PainSymptom Manage 2004; 27: 268-73.

26. Bruera E, Pereira J, Watanabe S, Belzile M, Kuehn N, HansonJ. Opioid rotation in patients with cancer pain. Cancer 1996;78: 852-7.

27. Tse DMW, Sham MMK, Ng DKH, Ma HM. An ad libitumschedule for conversion of morphine to methadone inadvancedcancer patients: an open uncontrolled prospective study in aChinese population. Palliat Med 2003; 17: 206-11.

28. Mercadante S, Villari P, Ferrera P. Burst ketamine to reverseopioid tolerance in cancer pain. J Pain Symptom Manage2003; 25: 302-5.

29. Vojkov SJ, Kristjanson LJ. Case study report of two palliativecare patients receiving intracerebroventricular (ICV)analgesia.J Palliat Care 2003; 19: 280-3.

30. Zaza C, Baine N. Cancer pain and psychosocial factors: acritical review of the literature. J Pain Symptom Manage 2002;24: 526-42.

31. Strang P, Strang S, Hultborn R, Arner S. Existential pain – anentity, a provocation, or a challenge? J Pain Symptom Manage2004; 27: 241-50.


IntroductionAlthough there are rapid advances in medical

technology, management of malignant wound is still agreat challenge. Patients living with malignant woundssuffer from devastating effect on their physical,psychological and social status, as well as negativeimpact on their families and carers.1 It requires not onlya holistic approach in assessment and care but also asensitive approach to ensure that the caring is realisticand acceptable to patient and carer.

Most malignant ulcers will not heal. The fewexceptions are the malignant skin ulcers at the initialstages, when managed by aggressive medicalintervention, such as surgery, radiotherapy, orchemotherapy.2 The nursing perspective of managingunhealed malignant wound will focus on ‘caring’ ratherthan ‘curing’. Ther goals of malignant woundmanagement are symptom control and to enhancepatient’s quality of life as much as possible.

Effective wound management requires thecollaboration of members of the multidisciplinary team,comprehensive skill and knowledge in wound care,appropriate selection of dressing materials, sensitivityto the patient’s condition and needs, and creativity intackling individual patient’s problem. With goodmanagement of malignant wounds, palliative carenurses can contribute to alleviation of suffering of thepatients and enhancement of their quality of life.

The impact of malignant woundAlthough malignant wounds occur more frequently in

advanced cancer, it is possible for patient to live formany more years with a malignant wound if thedisease is localized.3 Malignant wound frequently hasa combination of neovascularization, necrosis, andinflammation leading to pain, bleeding, malodour,massive exudate, and infection.4 It can cause panic ifmassive bleeding occurs. The bulky dressingmaterials, the malodour, the soiled clothes (due toleakage of blood or exudates from wound) or the siteof wound (e.g. breast or penile wound) may cause lossof dignity, altered body image, embarrassment andhelplessness. The most adverse effect of malignantwound is being a constant signal to persistently remindthe patient of the progression of the malignantdisease.5 The patient’s life will be taken over by thoseproblems and normal social activities cannot bemaintained.1,6 Therefore, apart from the adversesymptoms, patient may also suffer from depression,withdrawal, and social isolation. These severely affectpatient’s physical, psychosocial, and spiritual well-

being. It is also a source of distress to his/her familyand carers.

Management of malignant woundA holistic assessment is necessary before setting

the care plan for the malignant wound. It requires asensitive approach to recognize 1) the impact of thewound on the patient as well as his/her family orfriends, including the emotional and social aspects,the living environment, self-care abilities, and supportsystem; 2) the symptoms from the wound includingpain, malodour, bleeding, exudate, and evidence ofinfection; 3) the wound condition including site, sizeand depth, type of tissue (necrotic, slough,granulating, epithelial tissues), and progression; and4) any associated problems such as condition ofsurrounding skin, allergic reaction to dressing ortopical agents, functional impairment, and nutritionalproblem.

The management of malignant wound mustinclude both symptom control and psychologicalsupport to patient and his/her family. The generalcondition of the patient also affects the goals of care.When the patient is at end-of-life, the goal of care willfocus on comfort, pain control, and prevention ofbleeding so that the frequency of wound dressing willbe less. If death of patient is not imminent, the goal ofcare will focus on maximizing patient’s function bycontrolling wound infection, exudates and malodour,so that the frequency of wound dressing will be more.

Effective wound management requires anunderstanding of the wound problem and the concernof patient.

BleedingMalignant wounds are predisposed to bleeding

as the wound surface is always friable.4 (Fig.1)Spontaneous bleeding also occurs when the tumourerodes the blood vessels and may be compounded bydecreased platelet function.5 Bleeders in wounds arecaused by vascular disruption from necrosis, andbleeding may occur during removal of adherentdressing (e.g. dry gauze) from the wound. Woundinfection and anticoagulant therapy may alsoaggravate the bleeding problem. To reduce bleeding,preventive measures are important. Using non-adherent dressings and cleansing by irrigation insteadof swabbing will reduce the risk of traumatic bleedingfrom the wound.5 Soaking of adherent dressing beforeremoval is also necessary for prevention of tearing thefriable surface of the wound.

Management of malignant wound: nursing perspectiveMs Elaine Man Siu-ling, Nursing Officer, Haven of Hope HospitalMs Cecilia Kwan Wai-man, Nurse Specialist, Bradbury Hospice


Haemostatic dressing (e.g. Calcium alginate) orSucralfate paste (Sucralfate 1G mixed with 2-3 ml K Yjelly) are options to control bleeding by maintaining amoist wound environment and promoting clotting.7,8

Applying gentle pressure to the bleeding point canstop the bleeding usually. When bleeding is toomassive to be stopped by gentle pressure, applicationof 1:10000 Adrenaline soaked gauze with pressurecan be used as an emergency measure to controlbleeding.9,10 A dark coloured towel (e.g. green towel)can be placed over the dressing pads to reduce thescare of the bloody scene. Oral antifibrinolytics (e.g.Transamine) is also effective in reducing bleeding.1,7 Ifbleeding cannot be controlled effectively by the abovemeasures, diathermy, radiotherapy or embolisationmay be considered.

Wound InfectionAs the barrier function of skin is destroyed, wounds

are vulnerable to infection. Superficial infection can beindicated by either two of the five following symptoms:1) increased exudate with colour in gauze (e.g. greencolour), 2) malodour, 3) serous to purulent exudate, 4)erythema or edema, or 5) increased tendernessaround the lesion. Systemic infection is indicated byfever or increased white blood cell.2 Wound infection isalso interrelated with other problems such as pain,bleeding, malodour, massive exudates, rapidextension of wound, increase of slough and necrotictissue.

Wound cleansing is an important measure toprevent and control wound infection. Use of antiseptic(e.g. Hibitane, Betadine) is an option, but somepatients find Betadine irritating and painful.4 Reductionof slough and necrotic tissue may reduce thecolonization of bacteria in wound bed. When woundinfection is suspected, occlusive dressing (e.g.Tegaderm, DeoDERM CGF) must be avoided tominimize the rapid growth of bacteria in the moist andwarm environment so produced. Antiseptic / antibioticimpregnated paraffin gauze (e.g. Inadine gauze, sofra-tulle) or topical antibiotics (e.g. Flagyl gel, SilverSulfadiazine) may be sufficient to control superficialinfection.4 Systemic antibiotics are usually useful incontrolling wound infection. The use of honey (e.g.Manuka honey) is also an alternative in managingwound infection.2,11,12

MalodourMalignant wounds carry a high risk of wound

infection, especially with anaerobic or aerobicorganisms.4 Anaerobic and aerobic organisms thrive innecrotic tissue or purulent exudates and may lead tomalodour.13

Keeping the wound clean and use of topical orsystemic antibiotics to reduce anaerobic or aerobicorganisms can reduce the malodour from the wound.If slough or necrotic tissues are presented, one can

use autolytic debridement (e.g. Hydrogel – Intrasitegel / DuoDERM gel) rather than surgical debridementfor reducing the risk of bleeding.10 Activated charcoaldressing (e.g. Actisorb plus, Lyoform C, CarboFlex)can help to absorb malodour. Applying live yoghurt orhoney to the wound is also an alternative. To controlthe environment odour, one can consider usingcommercial deodorizers or bowls of vinegar, vanilla orcoffee. Fragrances and perfumes often produce mixedodour that is often poorly tolerated by patients.4

ExudateMassive exudate can result from wound infection or

wound inflammation. Sinus or fistula in the woundshould also be ruled out. The use of stoma bag cancontain the massive exudate if adhesion on flatsurface is possible (Fig 2). If sinus or fistula ispresent and communicate with secretory glands,hyoscine may be useful to reduce the amount ofexudate. Wound infection, as a cause of exudates,should be controlled. For large volume exudate, highabsorbent dressing such as calcium alginate (e.g.Sorbalgon, Kaltostat, SeaSorb), hydrofibra (e.g.Aquacel), or foam dressing (e.g. Lyoform) may beuseful. The use of topical or systemic steroids orNSAID may also reduce exudate by reducinginflammation. Application of skin barrier, barrierointment or hydrocolloid (e.g. Incare, DeoDERM CGF,Comfeel plus) protects the surrounding skin frommaceration and excoriation due to massive exudate.

PainMalignant wound pain may be due to 1)

exposure of nerve endings, 2) pressure on nerves orother structure or 3) wound infection. Pain may alsobe induced by use of some dressing products e.g.Betadine may be irritating and painful; or the cleansingprocedure itself, especially when the dry gauzeadheres to the wound. Pain is also aggravated bypatient’s anxiety.

Pain can be controlled by use of appropriateanalgesic and non-adherent dressing. For dressinginduced pain, skillful dressing technique (e.g.cleansing by irrigation rather than swabbing) andreducing the frequency of dressing change must beconsidered. To prevent pain during dressingprocedure, one can give pre-medication one hourbefore.5 Wound infection should be controlled ifpossible. The use of relaxation, distraction orvisualization to reduce anxiety or stress of patient isalso an alternative to control pain.

Cutaneous IrritationCutaneous irritation is a creeping or intensive

itching sensation attributed to the activity of thetumour, particularly in inflammatory breast diseaseand cutaneous infiltration.14 It is generally notresponsive to antihistamines.6 When irritation occurs,


allergy to dressing or topical agent must be excludedand immediate removal of allergen is necessary.Dryness of the skin may increase the itching sensationbut can be relieved by application of moisturizingcream. When anti-histamines are not effective, onemay consider NSAID or topical steroids for reducinginflammation. Transcutaneous Electrical NerveStimulation (TENS) may be useful for temporary reliefof irritation. Hormonal therapy or palliative chemo-therapy may relieve itching from the malignant woundby reducing tumour activity.6

Psychosocial AspectPsychosocial care of patient and family is also

important to reduce the distress. The disgustingappearance or malodour causes patient to withdrawfrom social activities. We should avoid the use of bulkydressing pads and keep the outer dressing clean anddry without malodour. Improving the outer appearanceof patients by wearing loose fitting coloured clotheshelps to disguise the malignant mass or dressing. Allthese measures encourage them to continue theirnormal social activities and maintain their psychologicalwell-being.

To improve patient’s self image is anotherimportant aspect of psychological care in nursing. Oneneeds to assess patients’ perception of body imagecarefully and encourage patients to verbalize theirfeeling and concern. Active listening with non-judgmental attitude and being acceptance andsupportive encourage patient to express. We shouldencourage patients to resume normal activity if possibleand give practical advices e.g. dress, control malodour,and use of cosmetic devices. Continuous support andpositive reinforcement will help patients to sustain theireffort in improving the body image. Enhancing patient’sacceptance of self and reinforcing own personal valuehelp patient to face the distress inflicted by the physicaldisfigurement. Family members should be educated inorder to promote their understanding and participationin care, which is valuable to patient.Conclusion

Managing malignant wound is complex andchallenging. Effective symptom control andpsychological care contribute to alleviation of sufferingof patients and enhancement of their quality of life. Aholistic and sensitive approach in assessment and careis necessary and the care plan must be realistic andacceptable to patient and carer. The general conditionof the patient in different stages of illness alsoinfluences the goal of care in managing the malignantwound.

Reference1. Pudner, R. (1998).The management of patients with a fungating

or malignant wound. J of Community Nursing. Available from URL:http:/www.jcn.co.uk/journal.asp?MonthNum=09&yearNum=1998&Type=backissue&Article (Accessed in 19 Mar 2004)

2. Rutledge, B.J. (2003). Malignant Wound Treatment: Aggressivetherapy required. Dermatology Times.. Available from URL:http:/www.dermatologytimes.com/dermatologytimes/content/printContentPopup.jsp?id=79730 (Accessed in 12 Apr 2004)

3. Grocott, P. (2000a). Palliative management of fungatingmalignant wounds. J of Community Nursing, 14(3), pp.31-40.

4. Ferris, F. & von Gunten, C. (2001). Fast Fact and Concept#46:Malignant wounds. End-of-life Physician Education ResourceCentre. Available from URL:http:/www.mywhatever.com/cifwriter/library/eperc/fastfact/ff46.html (Accessed in 18 Apr 2004)

5. Naylor, W. (2002). Symptom control in management offungating wounds. World Wide Wounds. Available from URL:http:/www.worldwidewounds.com/2002/march…lor/ Symptom-Control-Fungating-Wounds.html (Accessed in 12 Apr 2004)

6. Grocott, P. (2000b). The palliative management of fungatingmalignant wounds. J of Wound Care, 9(1), pp.4-9.

7. Cooper, D. & Cooper, J. (1993). Managing malignant ulcerseffectively. Nursing Standard. 8(2), pp.2528.

8. Emflorgo, C. A. (1998). Controlling bleeding in fungatingwounds. J of Wound Care, 7(5), pp.235.

9. Hoy, A. (1993). Other symptom challenges in The managementof terminal malignant disease. Saunders, C. & Sykes, N. (Eds).Edward Arnold, London. pp.160-167.

10. Grocott, P. (1999). The management of fungating wounds. J ofWound care, 8(5), pp.232-234.

11. Lawrence, J.C. (1999). Honey and wound bacteria. J of WoundCare, 8(4), pp.155.

12. Flanagan, M. (2000). Honey and the management of infectedwounds. J of Wound Care, 8(6), pp.4-9.

13. Adderley, U. & Smith, R. (2004). Topical agents and dressingfor fungating wounds. [Protocol] Cochrane Wounds Group,Cochrane Database of Systematic reviews, 2, 2004.

14. Regnard, C. & Tempest, S. (1998). A guide to symptom reliefin advanced disease. Hale, Hochland & Hochland, London.

Fig. 2: The use of stoma bag to contain exudatefrom a malignant wound due to colonic cancer

Fig. 1: Bleeding from a friable malignant wound


The Children’s Cancer Foundation (CCF)has established a pediatric palliative home careservice since November of 1999. The target groupof patients under this service are children withcancer who are under the care of five major HAhospitals in Hong Kong. There are three nurses inthe team who work in collaboration with otherprofessional workers in CCF and other disciplinesfrom the five referring hospitals. The aim ofpalliative home care service is to provide specializedpalliative nursing care for children with incurablecancer and their families, and enable these childrento stay at home as far as possible, using in-hospitaldays only when absolutely necessary. The goal ofpalliative nursing care is to provide physical andemotional comfort for the child and family.Bereavement care will be provided to family afterthe child ‘s death. Palliative home care service hasserved 70% of the children who have died ofchildhood cancer every year.

Raywas a 14-year-old boywho had been sufferingfrom brain tumourfor two years.

Ray received surgery, chemotherapy andradiotherapy. Unfortunately, his disease relapsedand palliative care was recommended. Ray and hisparents accepted the referral. They wished to havegood quality of life at the terminal stage. Ray wasliving with his parents and his elder brother. Theirrelationship was good and they were well supportedby other family members and friends. Ray’s motherwas the main carer and she was capable of caringRay at home. Ray wished to stay at home untildeath. Finally, he died peacefully with thecompanion of his brother and parents at home.

Ray was referred to CCF Palliative home careservice by his attending doctor one month beforehis death. Home care nurse visited Ray, either athome or in the hospital, whenever he and his familydeemed necessary. Home care nurse assisted thefamily in giving physical care, primarily byinstructing and supervising his mother inprocedures and techniques needed to providecomfort to Ray. Frequent telephone consultationskept the home care nurse informed of the updatedcondition of Ray. Home care nurse helped thefamily members to deal with any problems thatmight arise, and helped the family to obtain theneeded supplies and equipment to provide qualitycare for Ray.

Home care nurses are a source of informationfrom which the family draws to enable themselvesto care for the dying child in a way that iscompatible with their chosen lifestyle. Symptommanagement is one of the most important elementsto improve the quality of life of the child.

Support the family with a child suffering from advanced cancerby palliative care home care nurse: a case study

Lin Kwok-yin MolinNurse-in-charge, Palliative and home care service, Children’s Cancer Foundation

" There is no place like home..."


Ray complained of headache, backache, fatigue,vomiting, constipation and dysuria at terminal stage.Home care nurse assessed Ray’s physicalcondition continuously. Administration of morphineand fluid supplement by electronic machine throughHickman’s catheter was provided at home. Homecare nurse observed the effects and side effects ofthe medicine and reported to Ray’s attendingdoctors. Symptom control was feasible andsatisfactory at home.

Ray wished to stay at home until death. Ray’sparents discussed with their elder son about homedeath and they supported it finally. The palliativehome care team tried its best to fulfill their wishes.Both Ray and his family gained excellent supportsfrom others at home. For most parents, the mainburden of terminal care at home is psychological.Caregivers need a great deal of information andsupport to help them gain the confidence needed inmaking the remainder of their child’s life ascomfortable and peaceful as possible. Virtually allparents fear that they may not be able to cope withthe symptomatic expressions of the cancer sufferedby their children. They need to know in specificdetail what these are likely to be. Therefore, bothphysicians and nurses are expected to be sensitiveto the family’s needs for information, and to answerany questions regarding the disease progression.The presence of more than one caregiver, andempowerment of family members as effectivecaregivers, is also essential.

In terminal phase, there are always physicalsigns that indicate that the dying process hasbegun. Palliative home care nurses are in aposition to instruct the families regarding what torecognize and interpret as these terminalsymptoms. However, parents will be reassured thatthe home care nurse is on call 24 hours a day, andthe physicians of the child’s attending hospital canbe called at any time. The option of the childreturning to the hospital is always open.Pronouncement of death, care of the body andremoval from the home also require direct actionfrom caregivers. Thus, parents and the staff inpatient’s attending hospital should be well knownthe arrangement of death certification. This type ofinterim support will enhance parental care giving,and allow the ill child to remain at home in comfortduring the final phases of their life.

Majority of children wish to stay at home until theend. Children who die at home may have a greaterchance to control their environment, moreautonomy and privacy, and a greater sense ofnormalcy. Ray had said that home was a placewhere he felt most safe and experienced a sense ofbelonging. Spending their last days, weeks, ormonths at home not only benefits the dying child,but it is also believed to be crucial to the well beingof parents, siblings, and other family members whomost surely suffer greatly as well.

Regarding the psychological aspect, an open,honest discussion with children who are older thanage 4 is possible. Ray was well informed of hiscondition and prognosis. He prepared his impendingdeath and discussed his funeral with his parentsopenly. One of the roles of palliative nurses is tofacilitate an open discussion about the impendingdeath with children and their parents. These heart-to-heart conversations have a deep effect on thefamily. It enables the vast majority of children, andtheir families, to spend their last days togethercreating final memories, giving final gifts, findingspiritual peace, and saying goodbye. It is helpful forfamily’s bereavement.

Supporting a child staying at home until deathhas been challenging and distressing for home carenurses. Witnessing a child’s physical pain ormental distress is one of the major stressors fornurses. Nurses must be mindful not to becomeenveloped and trapped in the families’ stress anddespair, and develop a sense of powerlessness.Therefore, the support within the team, and someadditional time off, are necessary and importanttomaintain the mental well being of palliative homecare nurses. However, the experience of workingtogether with children who are terminally ill and theirfamilies is precious and worthy. Every story of apatient and their family at the end of life is uniqueand contributive to the experience of palliativehome care service.

References:A. Goldman (1998). Care of the dying child. Oxford: New York.S.T. Tang. Taiwan perspectives in palliative nursing care. InB.R.Ferrell & N.Coyle (2001) Textbook of Palliative Nursing. Oxford:New York.

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handle


Bereavement Care


narratelisten

response acknowledg-ment

burn-out

befriending careequal footing

Derek Doyle (2002). Volunteer in hospice and palliativecare: A handbook for volunteer service managers.Oxford University Press. UK.


Free paper abstract

The role of nurses in palliative care outreach teamYan SZETO,Nurse Specialist (Palliative). Grantham Hospital

AbstractThe philosophy of palliative care is getting more acceptances in different sectors of health care provision

now. The need for more support from the palliative care team in general / acute settings is rising. Thepalliative care outreach team of Grantham Hospital, originated from Nam Long Hospital, is established in2001. It is a multi-professional, interdisciplinary team. The objectives of the outreach team are to providepalliative care to cancer and non-cancer patients in Hong Kong Island hospitals, to facilitate patients toaccept the transition from curative to palliative treatments, to provide continuing palliative care to patients incluster hospitals and to liaise with other specialists in Hong Kong Cluster, to provide bereavement care tosignificant others of patients. In addition to providing home care, the outreach palliative care nurse playsimportant roles in consultation, liaison and provision of direct care. The nurse provides in-patient consultationto general / acute hospitals, gives advice to health professionals, promotes the care in symptommanagement, provides counseling and education to patient and family, participates in discharge planning,liaises with community services and NGOs, and support family through to bereavement. In order to catch upwith the service needs in palliative care, the outreach palliative care nurse is challenged to keep wellprepared for the expanding role and responsibilities.

Symptom Prevalence and Distress in the Last Days of Life ofTerminal Cancer Patients as Rated by

Patients, Caregivers and Health Care ProfessionalsDr. Kwok Oi Ling, Hospice Unit, Caritas Medical Centre

AbstractThe objectives of this study were to assess the symptom prevalence in the last days of life, the distress of each

symptom and to compare the distress of these symptoms as perceived by patients, caregiver and doctors.It was a prospective study and included patients admitted to Hospice Ward of Caritas Medical Centre with estimated

life expectancy of 2 weeks. A symptom prevalence questionnaire was completed by the doctor daily till patient died.Another symptoms distress questionnaire was used to assess the distress of each symptom as perceived by patients,caregivers and doctors. Sixteen symptoms were included in the questionnaire, including pain, dyspnoea, nausea,vomiting, dry mouth, haemoptysis, GI bleeding, cough, fatigue, cachexia, loss of appetite, dysphagia, diarrhoea,constipation, twitching and insomnia; and the distress was rated by a verbal rating scale. Patients, caregivers anddoctors completed the questionnaire on the same day. Only questionnaire completed within last 7 days of patient’s lifewere analysed in the study.

A total of 89 patients were included in the assessment of symptom prevalence. Fatigue, cachexia and loss ofappetite were the 3 commonest symptoms in the last days of life. Thirty patients out of these 89 patients were able tocomplete the second questionnaire on symptoms distress score in the last 7 days of life. Fatigue, cachexia and loss ofappetite were reported to be the three most distressful symptoms. In general doctors reported lower distress scores ascompared with the patients especially on symptoms of fatigue, cachexia, loss of appetite and dry mouth, which showeda statistical significant difference of p value <0.05.

Fatigue, cachexia and loss of appetite were the commonest and the most distressful symptoms during the lastdays of life. Further researches on the management of these symptoms and the meaning of these symptoms topatients are required.


Free paper abstract

The role of nurses in palliative care outreach teamYan SZETO,Nurse Specialist (Palliative). Grantham Hospital

AbstractThe philosophy of palliative care is getting more acceptances in different sectors of health care provision

now. The need for more support from the palliative care team in general / acute settings is rising. Thepalliative care outreach team of Grantham Hospital, originated from Nam Long Hospital, is established in2001. It is a multi-professional, interdisciplinary team. The objectives of the outreach team are to providepalliative care to cancer and non-cancer patients in Hong Kong Island hospitals, to facilitate patients toaccept the transition from curative to palliative treatments, to provide continuing palliative care to patients incluster hospitals and to liaise with other specialists in Hong Kong Cluster, to provide bereavement care tosignificant others of patients. In addition to providing home care, the outreach palliative care nurse playsimportant roles in consultation, liaison and provision of direct care. The nurse provides in-patient consultationto general / acute hospitals, gives advice to health professionals, promotes the care in symptommanagement, provides counseling and education to patient and family, participates in discharge planning,liaises with community services and NGOs, and support family through to bereavement. In order to catch upwith the service needs in palliative care, the outreach palliative care nurse is challenged to keep wellprepared for the expanding role and responsibilities.

Symptom Prevalence and Distress in the Last Days of Life ofTerminal Cancer Patients as Rated by

Patients, Caregivers and Health Care ProfessionalsDr. Kwok Oi Ling, Hospice Unit, Caritas Medical Centre

AbstractThe objectives of this study were to assess the symptom prevalence in the last days of life, the distress of each

symptom and to compare the distress of these symptoms as perceived by patients, caregiver and doctors.It was a prospective study and included patients admitted to Hospice Ward of Caritas Medical Centre with estimated

life expectancy of 2 weeks. A symptom prevalence questionnaire was completed by the doctor daily till patient died.Another symptoms distress questionnaire was used to assess the distress of each symptom as perceived by patients,caregivers and doctors. Sixteen symptoms were included in the questionnaire, including pain, dyspnoea, nausea,vomiting, dry mouth, haemoptysis, GI bleeding, cough, fatigue, cachexia, loss of appetite, dysphagia, diarrhoea,constipation, twitching and insomnia; and the distress was rated by a verbal rating scale. Patients, caregivers anddoctors completed the questionnaire on the same day. Only questionnaire completed within last 7 days of patient’s lifewere analysed in the study.

A total of 89 patients were included in the assessment of symptom prevalence. Fatigue, cachexia and loss ofappetite were the 3 commonest symptoms in the last days of life. Thirty patients out of these 89 patients were able tocomplete the second questionnaire on symptoms distress score in the last 7 days of life. Fatigue, cachexia and loss ofappetite were reported to be the three most distressful symptoms. In general doctors reported lower distress scores ascompared with the patients especially on symptoms of fatigue, cachexia, loss of appetite and dry mouth, which showeda statistical significant difference of p value <0.05.

Fatigue, cachexia and loss of appetite were the commonest and the most distressful symptoms during the lastdays of life. Further researches on the management of these symptoms and the meaning of these symptoms topatients are required.


The Decision Making Process on Facing Clinical Dilemmas in Palliative CareDr MK Sham,

Palliative Medical Unit, Grantham Hospital

AbstractA study was performed to review the local Chinese patients’ decision making process when facing clinical dilemmas

in palliative care, and whether advance care planning had or would have helped. Medical records of the 40 patientswho died during the period from 13 December 2003 to 31 January 2004 were reviewed. Patient/relatives’ expectationsof the palliative care service were elucidated in all but two patients. A total of 47 clinical dilemmas were noted in 33 ofthe 40 patients.

Healthcare decisions were either made by the patient or family members. No conflict among family members inmaking healthcare decisions has been recorded. The surrogate decision maker was identified by only one patient. The‘do-not-resuscitate’ order was recorded by the referring unit in only three patients; none being renewed by the palliativecare team. Cardio-pulmonary resuscitation was performed in none, the decision being accepted by families andsignificant others of all the patients. Most (83%) of the discussions on clinical dilemmas were raised by the palliativecare team. While family members agreed with the treatment plan proposed by the care team in 28/39 instances, theydisagreed on three occasions (7.7%). It is thus important for the palliative care team members to actively approach thepatients and their families to initiate discussion on the management of the patients. In eight of the 47 instances (17%),family members were uncertain of the patient’s preference to specific treatment, and it seemed that better advancecare planning might have helped.

Infections in a Palliative Care Unit: Retrospective AnalysisPT Lam, CY Tse, MW Leung,

Palliative Care Unit, United Christian HospitalKS Chan,

Pulmonary and Palliative Care Unit, Haven of Hope Hospital

AbstractBackground and Objective: Infection is common in palliative care. However, there is no local data. Thisstudy was taken to review the frequency and characteristics of infections among hospice patients, theprevalence of use of antibiotics and to compare the differences between those who had different outcomesafter infection

Study design: Medical records of all patients with terminal malignancy who were enrolled into palliative careservice during the period January 2002 to July 2002 were retrospectively reviewed.

Results: Among the eligible 87 patients, 70 had at least one infective episode and accounted for a total of120 episodes. Sixty eight episodes resulted in survival for > 14 days while fifty two episodes were associatedwith mortality. The most frequent sites of infection were chest (n=63, 52.5%), followed by urinary tract (n=35,29.2%) and skin /wound (n=6, 5%). 97.5% (n=117) episodes were prescribed antibiotics. The use of restrictedantibiotics was 16.2% (n=19). By multivariate logistic regression analysis, dyspnoea, final choice of antibioticsand route of administration were identified as independent determinants affecting survival after infection.Conclusion: Dyspnoea and final choice of antibiotics were possibly associated with prognosis in infections inpalliative care. Further studies are encouraged to verify this. The bioethical principles on the use of antibioticsas a life-sustaining treatment and palliative treatment should be followed.

Free paper abstract


Advance Care Planning Program for the Hong Kong Chinese Patients withAdvanced Chronic Obstructive Pulmonary Disease

Mr Chan Hon-keung Chris & Ms Pang Mei-che Samantha,Hong Kong Polytechnic University

Dr Chan Kin-sang & Dr Chan Kam-keung,Pulmonary and Palliative Care Unit, Haven of Hope Hospital

AbstractBackground: Patients with advanced COPD may need mechanical ventilation and cardiopulmonaryresuscitation in sustaining life. However, the burdens of those treatments may outweigh the benefits in end-of-life care. A palliative care approach is proposed to be a better alternative. One of the main concerns is thepatients and their families’ preferences for end-of-life care.

Aim: To design and test the feasibility of implementing an Advance Care Planning Program (ACPP) forimproving the decision making in end-of-life care of the patients with advanced COPD and their families.

Methods: The concept of Advance Care Planning had been analysed by using the evolutionary conceptanalysis method. Field observations and conversations with 15 patients with advanced COPD, their familiesand healthcare providers were conducted to understand the factors influencing their treatment preferences.Feedbacks of the program were obtained through the role plays with healthcare professional and elderlypersons.

Results: The ACPP is characterized by the interplay of ongoing communicative and social processes thatproactively elicit and preserve a person’s treatment and care preferences that conform to his/her values,beliefs and wishes in end-of-life care. Four main components of the program had been identified. They are"contextual understanding", "information giving", "family involvement", and "mutual understanding andconsensus building in treatment and care preferences".Conclusion: The ACPP is found feasible to apply in the local context. We found that the patients and theirfamilies are willing to engage in discussing the death-related issues and end-of-life care concerns providedthat the discussions are conducted in an informative, individualized and sensitive way.

A Prospective Longitudinal Study of Quality of Lifein Cancer Pain Patients After Referral To Pain Management Centre

Dr. Tay Teik Guan & Dr. Anne KwanDepartment of Anaesthesiology & Pain Management Centre,

United Christian Hospital

Abstract

To evaluate the effectiveness of pain management centre in improving pain control, mood change andquality of life (QOL), 33 consecutive in-patients with cancer pain referred to pain management centre over 3months period were enrolled into a prospective comparative study. Pain control, mood change and quality oflife (QOL) were measured using Hospital Anxiety and Depression Scale (HADS) and Short Form 36 (SF-36).All the patients were evaluated before the treatment and twelve patients were evaluated one week after thetreatment. Our results showed that there was no significant difference in the mood change and quality of lifebut a significant reduction in pain after the treatment. The role of pain management centre should extendbeyond pain control to the improvement of mood and quality of life in cancer pain patient in continuum withthe palliative care management.

Free paper abstract


The Use of Continuous Subcutaneous Methadone Infusionin Palliative Care: a Retrospective Study

W M Lam, AB Thorsen, K S Chan,Pulmonary and Palliative Care Unit, Haven of Hope Hospital

AbstractObjective: To study the usage, efficacy and side effects of continuous subcutaneous infusion (CSCI) ofmethadone in advanced cancer patients.

Methods: Retrospective review of patients using CSCI of methadone in a palliative care ward from February2002 to February 2004.

Major findings:Thirty-four patients were recruited with 21 male and 13 female. Median age was 61 years (range 34-91). Thekey cancer types were lung cancer (9) and gastrointestinal cancer (8). The chief indications were:neuropathic pain (62%), renal failure (21%), drug abuser on methadone maintenance (12%), and morphineintolerance (6%). The majority of patients (85%) were shifted from oral to CSCI methadone. The keyindication of CSCI was terminal condition (68%). The median daily dose used was 12.5 mg (range 2.5 mg to60 mg) with a median duration of 4.5 days (range 0.1 – 22 days). Only a minority of patients (11%) ultimatelyrequired a change to another subcutaneous opioid due to unsatisfactory symptom control. No major systemicside effects such as myoclonus, nausea, vomiting, and respiratory depression were attributed to the studydrug. Local complications including redness, swelling, pain and abscess occurred in 11 patients (32%). Onlyone patient resulted in stopping of CSCI methadone; others improved after change of insertion site. Localcomplications occurred more frequently when the drug was used for over 8 days (p=0.003).

Conclusion: The use of CSCI of methadone is an effective mean for symptom control in advanced cancerpatients. The profile of local side effects appears much less than previously reported (Bruera 1991).

Transdermal Fentanyl for Management of Chronic Cancer Pain—Experience in Hospice Unit of Caritas Medical Centre

Dr. Kwok Oi Ling,Caritas Medical Centre

AbstractTransdermal fentanyl is one of the available strong opioids used for chronic cancer pain in Hong Kong.

Transdermal patch at the strength of 25 g and 50 g were available in our hospital. A retrospective review ofterminal cancer patients admitted to Hospice Unit of Caritas Medical Centre from June 1995 to April 2004 whowere given transdermal fentanyl was performed. A total of 60 patients were reviewed. The reasons forswitching from one opioid or analgesic to transdermal fentanyl included difficulty in swallowing, intolerance toside effect of other opioids, inadequate pain control and patient refusal of oral medications. The mean dosageof fentanyl patch used in these patients was assessed. More than 70% of patients continue to use thefentanyl patch till death with minimal side effects. The efficacy, safety and adverse effect of fentanyl patch inthese groups of patients will be reviewed. A number of patients required adjunvant analgesic in addition to thefentanyl patch for improving pain control especially if the pain was neuropathic in nature. From our experiencein this group of advance cancer patients, transdermal fentanyl is an effective and well tolerated alternativeopioid for chronic cancer pain.

Free paper abstract


The Decision Making Process on Facing Clinical Dilemmas in Palliative CareDr MK Sham,

Palliative Medical Unit, Grantham Hospital

AbstractA study was performed to review the local Chinese patients’ decision making process when facing clinical dilemmas

in palliative care, and whether advance care planning had or would have helped. Medical records of the 40 patientswho died during the period from 13 December 2003 to 31 January 2004 were reviewed. Patient/relatives’ expectationsof the palliative care service were elucidated in all but two patients. A total of 47 clinical dilemmas were noted in 33 ofthe 40 patients.

Healthcare decisions were either made by the patient or family members. No conflict among family members inmaking healthcare decisions has been recorded. The surrogate decision maker was identified by only one patient. The‘do-not-resuscitate’ order was recorded by the referring unit in only three patients; none being renewed by the palliativecare team. Cardio-pulmonary resuscitation was performed in none, the decision being accepted by families andsignificant others of all the patients. Most (83%) of the discussions on clinical dilemmas were raised by the palliativecare team. While family members agreed with the treatment plan proposed by the care team in 28/39 instances, theydisagreed on three occasions (7.7%). It is thus important for the palliative care team members to actively approach thepatients and their families to initiate discussion on the management of the patients. In eight of the 47 instances (17%),family members were uncertain of the patient’s preference to specific treatment, and it seemed that better advancecare planning might have helped.

Infections in a Palliative Care Unit: Retrospective AnalysisPT Lam, CY Tse, MW Leung,

Palliative Care Unit, United Christian HospitalKS Chan,

Pulmonary and Palliative Care Unit, Haven of Hope Hospital

AbstractBackground and Objective: Infection is common in palliative care. However, there is no local data. Thisstudy was taken to review the frequency and characteristics of infections among hospice patients, theprevalence of use of antibiotics and to compare the differences between those who had different outcomesafter infection

Study design: Medical records of all patients with terminal malignancy who were enrolled into palliative careservice during the period January 2002 to July 2002 were retrospectively reviewed.

Results: Among the eligible 87 patients, 70 had at least one infective episode and accounted for a total of120 episodes. Sixty eight episodes resulted in survival for > 14 days while fifty two episodes were associatedwith mortality. The most frequent sites of infection were chest (n=63, 52.5%), followed by urinary tract (n=35,29.2%) and skin /wound (n=6, 5%). 97.5% (n=117) episodes were prescribed antibiotics. The use of restrictedantibiotics was 16.2% (n=19). By multivariate logistic regression analysis, dyspnoea, final choice of antibioticsand route of administration were identified as independent determinants affecting survival after infection.Conclusion: Dyspnoea and final choice of antibiotics were possibly associated with prognosis in infections inpalliative care. Further studies are encouraged to verify this. The bioethical principles on the use of antibioticsas a life-sustaining treatment and palliative treatment should be followed.

Free paper abstract


Advance Care Planning Program for the Hong Kong Chinese Patients withAdvanced Chronic Obstructive Pulmonary Disease

Mr Chan Hon-keung Chris & Ms Pang Mei-che Samantha,Hong Kong Polytechnic University

Dr Chan Kin-sang & Dr Chan Kam-keung,Pulmonary and Palliative Care Unit, Haven of Hope Hospital

AbstractBackground: Patients with advanced COPD may need mechanical ventilation and cardiopulmonaryresuscitation in sustaining life. However, the burdens of those treatments may outweigh the benefits in end-of-life care. A palliative care approach is proposed to be a better alternative. One of the main concerns is thepatients and their families’ preferences for end-of-life care.

Aim: To design and test the feasibility of implementing an Advance Care Planning Program (ACPP) forimproving the decision making in end-of-life care of the patients with advanced COPD and their families.

Methods: The concept of Advance Care Planning had been analysed by using the evolutionary conceptanalysis method. Field observations and conversations with 15 patients with advanced COPD, their familiesand healthcare providers were conducted to understand the factors influencing their treatment preferences.Feedbacks of the program were obtained through the role plays with healthcare professional and elderlypersons.

Results: The ACPP is characterized by the interplay of ongoing communicative and social processes thatproactively elicit and preserve a person’s treatment and care preferences that conform to his/her values,beliefs and wishes in end-of-life care. Four main components of the program had been identified. They are"contextual understanding", "information giving", "family involvement", and "mutual understanding andconsensus building in treatment and care preferences".Conclusion: The ACPP is found feasible to apply in the local context. We found that the patients and theirfamilies are willing to engage in discussing the death-related issues and end-of-life care concerns providedthat the discussions are conducted in an informative, individualized and sensitive way.

A Prospective Longitudinal Study of Quality of Lifein Cancer Pain Patients After Referral To Pain Management Centre

Dr. Tay Teik Guan & Dr. Anne KwanDepartment of Anaesthesiology & Pain Management Centre,

United Christian Hospital

Abstract

To evaluate the effectiveness of pain management centre in improving pain control, mood change andquality of life (QOL), 33 consecutive in-patients with cancer pain referred to pain management centre over 3months period were enrolled into a prospective comparative study. Pain control, mood change and quality oflife (QOL) were measured using Hospital Anxiety and Depression Scale (HADS) and Short Form 36 (SF-36).All the patients were evaluated before the treatment and twelve patients were evaluated one week after thetreatment. Our results showed that there was no significant difference in the mood change and quality of lifebut a significant reduction in pain after the treatment. The role of pain management centre should extendbeyond pain control to the improvement of mood and quality of life in cancer pain patient in continuum withthe palliative care management.

Free paper abstract


The Use of Continuous Subcutaneous Methadone Infusionin Palliative Care: a Retrospective Study

W M Lam, AB Thorsen, K S Chan,Pulmonary and Palliative Care Unit, Haven of Hope Hospital

AbstractObjective: To study the usage, efficacy and side effects of continuous subcutaneous infusion (CSCI) ofmethadone in advanced cancer patients.

Methods: Retrospective review of patients using CSCI of methadone in a palliative care ward from February2002 to February 2004.

Major findings:Thirty-four patients were recruited with 21 male and 13 female. Median age was 61 years (range 34-91). Thekey cancer types were lung cancer (9) and gastrointestinal cancer (8). The chief indications were:neuropathic pain (62%), renal failure (21%), drug abuser on methadone maintenance (12%), and morphineintolerance (6%). The majority of patients (85%) were shifted from oral to CSCI methadone. The keyindication of CSCI was terminal condition (68%). The median daily dose used was 12.5 mg (range 2.5 mg to60 mg) with a median duration of 4.5 days (range 0.1 – 22 days). Only a minority of patients (11%) ultimatelyrequired a change to another subcutaneous opioid due to unsatisfactory symptom control. No major systemicside effects such as myoclonus, nausea, vomiting, and respiratory depression were attributed to the studydrug. Local complications including redness, swelling, pain and abscess occurred in 11 patients (32%). Onlyone patient resulted in stopping of CSCI methadone; others improved after change of insertion site. Localcomplications occurred more frequently when the drug was used for over 8 days (p=0.003).

Conclusion: The use of CSCI of methadone is an effective mean for symptom control in advanced cancerpatients. The profile of local side effects appears much less than previously reported (Bruera 1991).

Transdermal Fentanyl for Management of Chronic Cancer Pain—Experience in Hospice Unit of Caritas Medical Centre

Dr. Kwok Oi Ling,Caritas Medical Centre

AbstractTransdermal fentanyl is one of the available strong opioids used for chronic cancer pain in Hong Kong.

Transdermal patch at the strength of 25 g and 50 g were available in our hospital. A retrospective review ofterminal cancer patients admitted to Hospice Unit of Caritas Medical Centre from June 1995 to April 2004 whowere given transdermal fentanyl was performed. A total of 60 patients were reviewed. The reasons forswitching from one opioid or analgesic to transdermal fentanyl included difficulty in swallowing, intolerance toside effect of other opioids, inadequate pain control and patient refusal of oral medications. The mean dosageof fentanyl patch used in these patients was assessed. More than 70% of patients continue to use thefentanyl patch till death with minimal side effects. The efficacy, safety and adverse effect of fentanyl patch inthese groups of patients will be reviewed. A number of patients required adjunvant analgesic in addition to thefentanyl patch for improving pain control especially if the pain was neuropathic in nature. From our experiencein this group of advance cancer patients, transdermal fentanyl is an effective and well tolerated alternativeopioid for chronic cancer pain.

Free paper abstract


Society for the Promotion of Hospice Careis committed to promote hospice care, providebereavement counseling services and developrelated professional training courses. SPHCadvocates community education to encouragepeople to value life, come to terms with death, andto foster a positive attitude towards a full life.

The work of SPHC could be grossly divided intothree categories. They are Hospice Palliative Care(HPC), Life & Death Education (LDE), and Grief &Loss (G&L). The focus of this presentation would beon SPHC’s new approach in professional trainingprogram, the community education program, andthe future strategies.

Professional TrainingMajority of deaths occur in acute care hospital

settings. We hope that every individual can receiveadequate care and support in the end of life.Therefore, End-of-Life (EOL) care training to equipthe health care professionals in non-hospicesettings to provide basic adequate EOL care isimportant.

Since 2001, the Society has offered a structuredtraining program to further enhance the skills ofhealth care workers in the care of people facing alife limiting illness. The previous 3-year program of8-day basic level, 5-day advanced level and 1-daymanagers’ workshops had reached more than 1,000health care professionals. In the new three-yearEOL education program, the targets have beenexpanded to include the frontline personal careworkers, and modifications are made to meetvarious levels of the care workers. The 3-Year End-of-Life Care (EOLC) Education Program includes 1540-hour classes for personal care workers, 11 40-hour classes basic level and 23 1-day, 2-day & 3-day advanced level workshops addressingpsychosocial issues for health care professionals.

Despite hospice palliative care services areavailable in the public health care system,sometimes such services may be declined. Thepatient and/or family members often are the barriersto address the needs of the dying.

Some common barriers to hospice palliative careservices are highlighted as follows: (1) unable toshift from cure to care oriented service (2)unfamiliar with the service, lack of knowledge & lackof confidence (3) misunderstanding of the service(4) myths & fears about death (5) avoidance & lackof role model. As a result, it is felt that there areburning needs to outreach the public to exploreabout dying, death and bereavement.

Community EducationCommunity is a huge target for SPHC, which is a

small charitable organization. Through strategicplanning, priorities are set according to accessibilityand feasibility. Elderly Outreach Program, Outreachto Patient Groups, and Latter Life Forum are someprograms targeting the public to facilitate an opendiscussion on aspects of life and death education,which will be discussed in more details later.

In 2003-2004, the Society has collaborated with37 different organizations to provide lectures,workshops and seminars, reaching more than 3,200community members. Our major LDE programs forthe community are highlighted as follows.

District ProgramIn Hong Kong (Government 2001 Census), over

700,000 people are aged 65 and above,representing 11.2% of the total population.Furthermore, life expectancy at birth has beenadvanced to 78.4 for men and 84.6 for women.Social data has highlighted the issue of an agingpopulation. With advancements in modernmedicine, people are living longer. Older adults whohave experienced multiple losses in life areinsightful in handling life’s inevitable. They haveunique interpretations to life. People tend toassume that elderly people avoid the subject ofdeath. From our outreach effort to the elderly, wefound the very opposite. The ones that avoid deathare, in fact, the middle aged and the young adults.With a secure environment and trustworthy groupmembers, older adults could share openly abouttheir attitudes towards death, dying, and theirpreferred end of life care options. Through such

Community Based End-of-Life EducationChan Man-yu, FayeProgram Development Director,Society for the Promotion of Hospice Care


discussions, elderly could raise self-awareness,understand one’s end of life care needs, and startadvance care planning.

SPHC targeting the 18 districts all over HongKong, we outreach to a district every other month.We have been to Wanchai, Kwun Tong, Central &West, Wong Tai Sin and Shatin. Other scheduleddistricts include Tsueng Kwan O, Tai Po, KowloonCity, Shamshuipoo and Yau Tsim Mong.

In collaboration with the local District ElderlyCommunity Center (DECC), we have three modulesto provide in each district. Module one is the"Celebrate Life" Infotainment Show, which is a lifeeducation program with LDE messages built into theperformances and entertainment elements of theshow. We have volunteers’ involvement includingsome celebrities to provide a quality interactiveshow. Elderly people that attended this programhave commented positively about it. Module two isthe LDE Workshop for the co-workers whoseservice target are the elderly. The workshop focuseson raising participants’ self-awareness on death anddying. Together in groups, they plan creatively someLDE programs for their service target. Someguidelines and insights on conducting LDEprograms are shared. Module three is abereavement component. Depending on the needsof the district, we would conduct bereavement groupfor the elderly with co-workers from the district.Sometimes, training to co-workers would beconducted instead of running groups.

Patient Group WorkshopOutreach to Patient Groups is a collaborative

program with various patient group organizations.People with long-term illnesses and their familiesare invited. The program includes information frominvited specialists in palliative care, emphasizing aholistic approach and enhancement of patients’quality of life.

The format is an experiential one withparticipatory activities to elaborate the messagesfrom the experts and help participants more easilytransfer knowledge to daily life practice. It has afocus on coping with losses. People with long termillnesses would have experienced multiple lossesboth tangible and non-tangible forms. The workshopemploys various techniques to enhancecommunications among family members, and to usea "life review" approach to affirm the togethernessand resilience of the patients and their family.

Latter Life Forum

SPHC also hosts regularly "Latter Life Forum" tocreate a platform to facilitate an open discussionamong guest speakers and the public on aspects ofEOL care. Each forum explores a designated topicwith various experts taking different perspectives, soas to empower the public with a full range ofinformation on EOL issues.

The Forum also facilitates a positive attitudetowards the discussion of death so as to set anexample of addressing the issues of death anddying honestly and openly. The previous one washeld on 15th May 2004 (Sat) at the Central library.Perspectives shared from a palliative physician, aspiritual leader, and a hospice advocate.

DiscussionsDeath is a taboo in many communities.

Regardless health care professionals or lay people,we tend to avoid the discussion of end of life issues.It is simply not easy to talk about death. However, inorder to have a more satisfied end of life care, it isessential that we address it frankly. We need toexamine our own attitude towards death and dying.Being so difficult to talk about death with loved ones,one would ask how could we tackle it. The key is, asFred Rodgers proposed, "Making difficult mattersmentionable is one of the best ways to help makethem manageable." (in Corr, Nabe & Corr, 2003)

Most people are unfamiliar and uncomfortablewith EOL issues. Fears, lack of knowledge, lack ofconfidence and role modeling are some contributingfactors that make the experience with a dyingrelative less satisfactory. Therefore, the mainstrategy to make EOL issues palatable fordiscussion is to address these factors.

Through experiential and person-centeredapproach, a person’s self-awareness on death,dying and bereavement could be raised, and deathissues could be discussed frankly and openly.Experiential learning in LDE activities are moreeffective in stimulating personal feelings and selfawareness of own attitudes about death. In a groupsetting, it fosters sharing and acceptance ofemotions, and therefore, is more effective to induceattitude change. (Durlak & Reisenberg, 1991)

SPHC has developed many teaching tools toassist various target groups in disseminating LDEmessages. Some video clips were shown todemonstrate the tactics used to challenge viewers’attitudes and beliefs.


Besides, death is part of living; life and death areclosely related. Death is happening everydayaround us. We could use the "teachable moments"in daily life to learn about LDE.

ConclusionWe have discussed about End of Life Care, and

Life & Death Education. It is important that morepeople would identify with our mission, and joinforce with us towards a better prospect. Thepossible ways are shared as follows.

For Hospice and Palliative Care / End of Life Care,we hope to:1. Support broadening hospice palliative care

service to all those approaching end of life.2. Continue with End-of-Life care education

programs; widen the targets to include others;such as the personal care workers, police, firefighters and morgue attendants.

3. Inform community about hospice palliative careservice, and how to access the resources.

4. Strengthen community care for the dying thatwishes to stay/die at home.

For Life and Death Education, we aspire to:1. Promote life & death education to the public to

foster a positive attitude towards death, dyingand bereavement

2. Expand the targets to include primary andsecondary teachers, principals and guidancecounselors

3. Support related local research

SPHC asks your support in working towards acommunity that put priorities in caring for itsvulnerable members in the end stage of life, and indoing so, community is facilitated to appreciate thewhole spectrum of life.

References:Corr, C., Nabe, C. & Corr, D. (2003). Learning about death,dying, and bereavement. Death and Dying, Life and Living.4th Ed. (pp.1-16). USA: Thomson-Wadsworth.Durlak, J.A., & Reisenberg, L.A. (1991) The impact of deatheducation. Death Studies, 15, 39-58

Photos:

Left: Patient group workshop

Below: Life & death education workshop

Documents

Hong Kong Society of Palliative Medicine€¦ · Hong Kong Society of Palliative Medicine Special Edition Guest editorial ... with a life limiting illness Support the family with