Communicating Prognosis

8/8/2019 Communicating Prognosis

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CommunicatingCommunicatingPrognosisPrognosis

at End of Lifeat End of LifeMaximising care inMaximising care inadvanced stages of lifeadvanced stages of life--limiting diseaselimiting disease

Guy Rees University ofGuy Rees University of

Adelaide August 2007Adelaide August 2007


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Communication at end of lifeCommunication at end of lifeVital skill for health care professionalsVital skill for health care professionals

caring for patients with progressive lifecaring for patients with progressive life--limiting illnesses, and their families.limiting illnesses, and their families.MJA 186.12.2007MJA 186.12.2007


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PREPAREDPREPARED PPrepare for discussionrepare for discussion

RRelate to the personelate to the person

EElicit patient and caregiver preferenceslicit patient and caregiver preferences

PProvide informationrovide information

AAcknowledge emotions and concernscknowledge emotions and concerns

(foster)(foster) RRealistic hopeealistic hope EEncourage questionsncourage questions

DDocumentocument


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Prepare for discussionPrepare for discussion Confirm pathological diagnosisConfirm pathological diagnosis

Try to ensure privacy and timeTry to ensure privacy and time Negotiate who should be presentNegotiate who should be present


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Relate to the personRelate to the person Develop rapportDevelop rapport

Show empathy, care and compassionShow empathy, care and compassion


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Elicit patient and caregiverElicit patient and caregiver

preferencespreferences Identify reasons for this consultationIdentify reasons for this consultation

and elicit the patients expectationsand elicit the patients expectations

Clarify the patients or the caregiversClarify the patients or the caregiversunderstanding of their situation andunderstanding of their situation andestablish how much detail and whatestablish how much detail and whatthey want to knowthey want to know

Consider cultural and contextual factorsConsider cultural and contextual factorsinfluencing information preferencesinfluencing information preferences


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Provide informationProvide information Tailor information to the individual needs ofTailor information to the individual needs of

both the patient and their familyboth the patient and their family

Offer to discuss what to expect, in a sensitiveOffer to discuss what to expect, in a sensitivemanner, giving the patient the option not tomanner, giving the patient the option not todiscuss itdiscuss it

Pace information to the patients informationPace information to the patients information

preferences, understanding andpreferences, understanding andcircumstancescircumstances

Use clear, jargon free, understandableUse clear, jargon free, understandablelanguagelanguage


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Provide information (cont)Provide information (cont) Explain the uncertainty, limitations andExplain the uncertainty, limitations and

unreliability of prognostic and end of lifeunreliability of prognostic and end of lifeinformationinformation

Avoid being too exact with timeframes unlessAvoid being too exact with timeframes unlessin the last few daysin the last few days

Consider the caregivers distinct informationConsider the caregivers distinct informationneeds, which may require a separate meetingneeds, which may require a separate meeting

with the caregiverwith the caregiver Try to ensure consistency of information andTry to ensure consistency of information and

approach provided to different familyapproach provided to different familymembers and the patient prom differentmembers and the patient prom different

clinical team membersclinical team members


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Acknowledge emotions andAcknowledge emotions and

concernsconcerns Explore and acknowledge the patientsExplore and acknowledge the patients

and caregivers fears and concerns andand caregivers fears and concerns and

their emotional reaction to thetheir emotional reaction to thediscussiondiscussion

Respond to the patients or caregiversRespond to the patients or caregivers

distress regarding the discussiondistress regarding the discussion


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(foster) Realistic hope(foster) Realistic hope Be honest without being blunt or giving moreBe honest without being blunt or giving more

detailed information than is desired by thedetailed information than is desired by the

patientpatient Do not give misleading or false information toDo not give misleading or false information to

try to positively influence a patients hopetry to positively influence a patients hope

Reassure that support, treatments andReassure that support, treatments and

resources are available to control pain andresources are available to control pain andother symptoms, but avoid prematureother symptoms, but avoid prematurereassurancereassurance

Explore and facilitate realistic goals andExplore and facilitate realistic goals and

wishes, and ways of coping on a day to daywishes, and ways of coping on a day to daybasisbasis


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Encourage questionsEncourage questions Encourage questions and informationEncourage questions and information

clarification : repeat explanationsclarification : repeat explanations

Check understanding and if theCheck understanding and if theinformation provided meets theinformation provided meets thepatients and caregivers needspatients and caregivers needs

Leave the door open for topics to beLeave the door open for topics to bediscussed again in the futurediscussed again in the future


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DocumentDocument Write a summary of what has beenWrite a summary of what has been

discussed in the medical recorddiscussed in the medical record

Speak or write to other key healthcareSpeak or write to other key healthcareproviders involved in the patient's care.providers involved in the patient's care.This should include the patients generalThis should include the patients general

practitionerpractitioner


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Physical and social settingPhysical and social settingSome people like to bring someoneSome people like to bring someone

who is close to them to thewho is close to them to the

appointmentappointmentIs there anyone else you would like toIs there anyone else you would like to

be here with while we talk?be here with while we talk?

If there are things you might prefer toIf there are things you might prefer todiscuss with me alone, Id be happy todiscuss with me alone, Id be happy toorganise thatorganise that


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Physical and social settingPhysical and social setting

(cont)(cont)Are you comfortable having anotherAre you comfortable having another

member of my team present when wemember of my team present when we

discuss your resultsdiscuss your results

I would be very happy to discusswithI would be very happy to discusswithyou. We wont have enough time todayyou. We wont have enough time today

to address that properly. Is it alright if Ito address that properly. Is it alright if Icome back (state when)come back (state when)


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How to discuss prognosis andHow to discuss prognosis and

end of life issuesend of life issuesIf Ive heard you right, you seem to beIf Ive heard you right, you seem to be

sayingsaying

This has been a tough time for you and yourThis has been a tough time for you and yourfamily, and you have faced the challenges offamily, and you have faced the challenges ofthis illness with great couragethis illness with great courage

Do you have any questions or otherDo you have any questions or other

concerns?concerns?Some people are worried about things thatSome people are worried about things that

might or might not happen in the future. Itmight or might not happen in the future. Itcan help to talk about thiscan help to talk about this


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end of life issues (cont)end of life issues (cont)I am very happy to talk to you about anyI am very happy to talk to you about any

concerns or questions about this now or later.concerns or questions about this now or later.

Is there anything that you would like to askIs there anything that you would like to askme today about this?me today about this?

Often people with conditions like yours haveOften people with conditions like yours havegot a lot of questions that are sometimesgot a lot of questions that are sometimesscary, or sometimes they are not sure if theyscary, or sometimes they are not sure if theywant to know the answer. Often the thingwant to know the answer. Often the thingthat they fear or believe is worse than how itthat they fear or believe is worse than how itreally is. If there is anything you want toreally is. If there is anything you want toknow, feel free to ask meknow, feel free to ask me


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end of life issues (cont)end of life issues (cont)What is you understanding of your healthWhat is you understanding of your health

situation and what is likely to happen?situation and what is likely to happen?

Do you have thoughts about where you areDo you have thoughts about where you aregoing with your illness?going with your illness?

Can you summarise to me what the doctorsCan you summarise to me what the doctorshave explained to you about your illness/ Dohave explained to you about your illness/ Do

you think your illness may affect your healthyou think your illness may affect your healthin the future?in the future?

What are you expecting to happen?What are you expecting to happen?

What is your biggest concern at theWhat is your biggest concern at the

moment?moment?


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end of life issues (cont)end of life issues (cont)It is also important for (caregiver) to haveIt is also important for (caregiver) to have

the opportunity to find out what they need tothe opportunity to find out what they need to

know to be able to take care of you. Are youknow to be able to take care of you. Are youhappy for me to speak to them about this?happy for me to speak to them about this?

To caregiver: How do you think (patient) isTo caregiver: How do you think (patient) isgoing?going?

What do you understand is likely to happenWhat do you understand is likely to happento (patient)?to (patient)?

What information will best help you to copeWhat information will best help you to copewith your care giving role?with your care giving role?


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end of life issues (cont)end of life issues (cont)Can you please help me to understand whatCan you please help me to understand what

I need to know about your beliefs andI need to know about your beliefs and

practices to take best care of you?practices to take best care of you?Every person is different. I can only tell youEvery person is different. I can only tell you

what usually happens to people in yourwhat usually happens to people in yoursituation, not exactly what will happen to yousituation, not exactly what will happen to you

A lot of people find it hard not knowing whatA lot of people find it hard not knowing whatwill happen next or when. Is this somethingwill happen next or when. Is this somethingyou find difficult?you find difficult?


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end of life issues (cont)end of life issues (cont)I want to talk about three things today: theI want to talk about three things today: the

test results, what this will mean for you andtest results, what this will mean for you and

the treatment that is possible. You mightthe treatment that is possible. You mighthave some things to discuss too.have some things to discuss too.

Doctors sometimes forget and use wordsDoctors sometimes forget and use wordsthat may not be understood. Please stop methat may not be understood. Please stop meif I am doing thisif I am doing this

It sounds like this information is differentIt sounds like this information is differentfrom what you expected, and I think it wouldfrom what you expected, and I think it wouldbe upsetting for anyonebe upsetting for anyone


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end of life issues (cont)end of life issues (cont)How are you feeling about what we have justHow are you feeling about what we have just

discussed?discussed?

it is clearly really important to you. Wouldit is clearly really important to you. Wouldit be helpful to discuss these issues further?it be helpful to discuss these issues further?Who might be the right person to talk to?Who might be the right person to talk to?

Have I given you the information that youHave I given you the information that you

need?need?Is there anything I have said that you wouldIs there anything I have said that you would

like me to go over?like me to go over?


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General strategies to facilitateGeneral strategies to facilitate

hope and copinghope and copingOur team will do our best to support youOur team will do our best to support you

throughout your illnessthroughout your illness

You will not be abandonedYou will not be abandonedI will be available to discuss your care withI will be available to discuss your care with

you (GP / pall care team) even if you are notyou (GP / pall care team) even if you are notable to come and see me in the clinicable to come and see me in the clinic

The aim of treatment is moving moreThe aim of treatment is moving moretowards maximising your function andtowards maximising your function andcomfortcomfort

We have al lot of ways to relieve (pain,We have al lot of ways to relieve (pain,

nausea, dyspnoea) and other symptomsnausea, dyspnoea) and other symptoms


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hope and coping (cont)hope and coping (cont)We will do everything we can to ensure youWe will do everything we can to ensure you

are as comfortable as possibleare as comfortable as possible

What is your most important(hope /What is your most important(hope /expectation) about the future?expectation) about the future?

What are the things you most want to investWhat are the things you most want to investyour time and energy in?your time and energy in?

Some patients say that it helps to take oneSome patients say that it helps to take oneday at a time, and live for the moment asday at a time, and live for the moment asmuch as possiblemuch as possible

Many people find that they best cope byMany people find that they best cope by

keeping to a routinekeeping to a routine


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hope and coping (cont)hope and coping (cont)We can prepare for the worst whilst hopingWe can prepare for the worst whilst hoping

for the bestfor the best

I have no problems with you exploringI have no problems with you exploringalternative treatments. These treatments mayalternative treatments. These treatments mayhave little effect and they may be expensivehave little effect and they may be expensive

Every treatment has benefits and burdens.Every treatment has benefits and burdens.What are you hoping to achieve?What are you hoping to achieve?


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Commencing or changingCommencing or changing

disease specific treatmentsdisease specific treatmentsThe aim of this treatment is to help makeThe aim of this treatment is to help make

you feel better. We will monitor the benefitsyou feel better. We will monitor the benefits

and side effects of the treatment and talkand side effects of the treatment and talkabout the options if the treatment is notabout the options if the treatment is nothelping youhelping you

There is about an (X)% chance that theThere is about an (X)% chance that thetreatment will shrink the tumour. This shouldtreatment will shrink the tumour. This shouldmake you feel better, but may only extendmake you feel better, but may only extendyour life by (time)your life by (time)

So, based on your goal of(aim), I proposeSo, based on your goal of(aim), I proposethat we do the followingWhat are yourthat we do the followingWhat are yourthoughts?thoughts?


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Cessation of disease specificCessation of disease specific

treatmentstreatmentsYour disease is no longer responding to theYour disease is no longer responding to the

(treatment). More of the treatment would(treatment). More of the treatment would

cause you more harm than good. It is likelycause you more harm than good. It is likelythat you will have better quality of lifethat you will have better quality of lifewithout further (treatment)without further (treatment)

The aim of the treatment is now changingThe aim of the treatment is now changingfrom trying to control the cancer to trying tofrom trying to control the cancer to trying tominimise the symptoms you might getminimise the symptoms you might get

My aim is to optimise your comfort andMy aim is to optimise your comfort andability to function as normally as possibleability to function as normally as possible


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Introducing specialist palliativeIntroducing specialist palliative

care servicescare servicesI work closely with the palliative care team inI work closely with the palliative care team in

looking after patients such as yourself wholooking after patients such as yourself who

have advanced cancer diseasehave advanced cancer diseaseThe palliative care team can provide extraThe palliative care team can provide extra

support to you and your family and helpsupport to you and your family and helpoptimise your comfort and functionoptimise your comfort and function

Many people have not heard of palliativeMany people have not heard of palliativecare, or associate it with dying in the verycare, or associate it with dying in the verynear futurenear future

Have you any experience of others receivingHave you any experience of others receivingpalliative care?palliative care?


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Introducing specialist palliativeIntroducing specialist palliative

care services (cont)care services (cont)The palliative care team have a lot to offer asThe palliative care team have a lot to offer as

support. This includes pain control and thesupport. This includes pain control and the

control of other symptoms resulting fromcontrol of other symptoms resulting fromcancercancer

The palliative care team works closely withThe palliative care team works closely withme to help you live life to the fullme to help you live life to the full

I will still be your main doctor, but theI will still be your main doctor, but thepalliative care team will be able to providepalliative care team will be able to provideextra supportextra support


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Discussing life expectancyDiscussing life expectancyBefore I answer that question, I need yourBefore I answer that question, I need your

help to understand what changes you mayhelp to understand what changes you may

have noticed in your body recently. This willhave noticed in your body recently. This willgive an indication of how things may go. Howgive an indication of how things may go. Howhave your energy levels been going (time)?have your energy levels been going (time)?

Several things might affect how long aSeveral things might affect how long aperson with your condition might live. Forperson with your condition might live. Forexample, how well your cancer responds toexample, how well your cancer responds to(treatment)(treatment)

It is very difficult to say how long someoneIt is very difficult to say how long someonehas to live. I can only guess in terms of days,has to live. I can only guess in terms of days,weeks, months. My guesstimate would beweeks, months. My guesstimate would be


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Discussing life expectancyDiscussing life expectancy

(cont)(cont)Are you the type of person who likes to knowAre you the type of person who likes to know

the numbers, or would you more interested inthe numbers, or would you more interested inthe big picture?the big picture?

The typical person with your type and stageThe typical person with your type and stageof cancer lives (time). This means that half ofof cancer lives (time). This means that half ofthe people lives more than (time) and halfthe people lives more than (time) and halflive less than (time)live less than (time)

We can only talk in averagesWe can only talk in averages some peoplesome peopledo a lot better and some do a lot worsedo a lot better and some do a lot worse

Statistics do not tell us exactly what willStatistics do not tell us exactly what willhappen to an individual with that illnesshappen to an individual with that illness


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Discussing future symptomsDiscussing future symptoms

and their managementand their managementIs there anything that is worrying you aboutIs there anything that is worrying you about

the future in terms of managing yourthe future in terms of managing your

symptoms?symptoms?What usually happens is that you will getWhat usually happens is that you will get

more tired and have to spend more time inmore tired and have to spend more time inbedbed

With time, you are likely to have less energyWith time, you are likely to have less energyto do things and need more time resting.to do things and need more time resting.Therefore, it is important to do the things youTherefore, it is important to do the things youwant or need to do now while you are stillwant or need to do now while you are stillwell enoughwell enough


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Advanced care planningAdvanced care planningHave you thought about the type of medicalHave you thought about the type of medical

care that you would like to have if you evercare that you would like to have if you ever

became too sick to speak to yourself?became too sick to speak to yourself?Do you know who would make decisionsDo you know who would make decisions

about your medical treatment if you wereabout your medical treatment if you wereunable to make them for yourself?unable to make them for yourself?

It is often easier to talk through toughIt is often easier to talk through toughdecisions when there isnt a crisisdecisions when there isnt a crisis


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Discussing the process ofDiscussing the process of

death and dyingdeath and dyingIt is very difficult for any of us toIt is very difficult for any of us to

contemplate our own death. Are therecontemplate our own death. Are there

particular fears or issues concerning youparticular fears or issues concerning youabout dying?about dying?

Have you any thoughts about where youHave you any thoughts about where youwould like to be when you get sicker with thiswould like to be when you get sicker with thisillnessillness where would you like to be cared forwhere would you like to be cared forwhen you die?when you die?

Often people become more drowsy and lessOften people become more drowsy and lessaware of what is going on around them. Asaware of what is going on around them. Asfar as we can tell, it is not frightening orfar as we can tell, it is not frightening or

distressingdistressing

b f il bb f il b


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Request by family members toRequest by family members towithhold prognostic information fromwithhold prognostic information from

the patientthe patientWhy do you not want me to tell?Why do you not want me to tell?

What are you afraid I might say?What are you afraid I might say?

What are you frightened may happen?What are you frightened may happen?Has (patient) specifically asked you to haveHas (patient) specifically asked you to have

me withhold information?me withhold information?

In my experience, people are often moreIn my experience, people are often more

stressed and frightened by the unknown thanstressed and frightened by the unknown thanby the truth told gentlyby the truth told gently

By no acknowledging what is happening, weBy no acknowledging what is happening, weare blocking (patient) from having someare blocking (patient) from having some

really important conversationsreally important conversations


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Dealing with conflictsDealing with conflictsIf(patient) was able to talk to us, what doIf(patient) was able to talk to us, what do

you think (patient) would say?you think (patient) would say?

Explore emotional and cultural belief issuesExplore emotional and cultural belief issueswhich are preventing free discourse ofwhich are preventing free discourse ofinformationinformation

Enter into negotiation to achieve a mutuallyEnter into negotiation to achieve a mutually

acceptable solutionacceptable solutionArrange a second opinion or skilledArrange a second opinion or skilled

communicator to aid the discussioncommunicator to aid the discussion


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Dealing with denial orDealing with denial or

unrealistic expectationsunrealistic expectationsWhat is your understanding of what is likelyWhat is your understanding of what is likely

to happen with your illness and futureto happen with your illness and future

treatment options?treatment options?I wish too that this disease would get better.I wish too that this disease would get better.

If we cannot achieve that, what other shorterIf we cannot achieve that, what other shorterterm aims do you have?term aims do you have?

I know you are hoping that the treatmentI know you are hoping that the treatmentwill work well, but I feel it is important to talkwill work well, but I feel it is important to talkabout what ifabout what if


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SummarySummary Dealing with cancer starts at diagnosis,Dealing with cancer starts at diagnosis,

and the spectre of death and terminaland the spectre of death and terminal

care is present from that timecare is present from that time

We must be able and willing to engageWe must be able and willing to engagewith patients in a helpful and informedwith patients in a helpful and informed

way to facilitate their understand ofway to facilitate their understand ofdisease and the care we are givingdisease and the care we are giving

Documents

Communicating Prognosis