Consensus Statement: Essential Elements For Safe And High-quality End .

guiding principles1. D ying is a normal part of life and a human experience, not just a biological ormedical event.2. Patients must be empowered to direct their own care, whenever possible. Apatient’s needs, goals and wishes at the end of life may change over time.3. Providing for the cultural, spiritual and psychosocial needs of patients, and theirfamilies and carers is as important as meeting their physical needs.4. Recognising when a patient is approaching the end of their life is essential todelivering appropriate, compassionate and timely end-of-life care.5. The prognosis and the way that people respond to medical treatment will varybetween individuals. This means that there is potential for ambiguity and uncertaintyat the end of life. This must be honestly and openly acknowledged, and discussedwith patients, substitute decision-makers, families and carers.6. Safe and high-quality end-of-life care is patient and family-centred.Whenever possible, it should be aligned with the values, needs and wishes ofthe individual, and their family or carers. Such care should consider the patient’sexpressed wishes regarding the circumstances, environment and place in whichthey wish to die.7. S afe and high-quality end-of-life care requires the availability of appropriatelyqualified, skilled and experienced interdisciplinary teams.8. Safe and high-quality end-of-life care requires effective communication, collaborationand teamwork to ensure continuity and coordination between teams, within andbetween settings, and across multiple episodes of care.9. Care of the dying is urgent care. Timely recognition of a patient’s transition to theterminal phase of life must be documented and communicated to patients, families,carers and other health professionals by the interdisciplinary team. The care planmust be specifically revised to meet the unique needs of the patient, family andcarers during this phase.10. End-of-life decision-making should be shared between the interdisciplinary team andthe patient. Substitute decision-makers, families and carers should be involved, inaccordance with the patient’s expressed wishes and/or jurisdictional legislation.4National Consensus Statement: essential elements for safe and high-quality end-of-life care

11.The interdisciplinary team has a responsibility to: provide timely and accurate information regarding the patient’s clinical conditionand its severity or stage, the expected disease trajectory, the available treatments,and the likelihood of response to such treatments clearly communicate information to support patients (or substitutedecision‑makers, families and carers) to make decisions about care, and tocheck that they understand the implications, consequences and risks associatedwith such decisions invite patients to participate in the process of advance care planning, andcreate opportunities for patients to make decisions and to communicate theirvalues, goals and wishes regarding their end-of-life care offer support, expert opinion and advice so that patients (or substitute decisionmakers, families and carers) can participate in fully informed, shared (or supported)decision-making identify existing advance care plans and provide care in accordance withthe patient’s expressed wishes document, communicate and hand over the agreed plan of care and any limitationsof medical treatment to other clinicians involved in the patient’s care.12. For ethical reasons, it is important not to harm patients approaching the end of lifeby providing burdensome investigations and treatments that can be of no benefit.13. Patients have the right to refuse medical treatments. Decisions regarding treatmentmay be made in advance and remain valid unless the patient (or substitutedecision‑maker, family and carers) state otherwise.14. Unless required by law, doctors are not obliged to initiate or continuetreatments that will not offer a reasonable hope of benefit or improve thepatient’s quality of life.15. Care of the deceased person, and care for families and carers extends tothe period after the patient has died.National Consensus Statement: essential elements for safe and high-quality end-of-life care5

essential elementsThe essential elements of this ConsensusStatement are the features that are required insystems to ensure safe and high-quality carefor patients who are approaching the end of life.These elements do not prescribe how care shouldbe delivered. Application of the elements will varyaccording to the local circumstances of the healthservice, the available resources, and the individualneeds and preferences of the patient receiving care.Health services need to have systems in place toaddress all the elements.This Consensus Statement contains 10 essentialelements. Elements 1–5 relate to the way inwhich end-of-life care should be approached anddelivered. Elements 6–10 relate to structural andorganisational prerequisites for the effective deliveryof safe and high-quality end-of-life care.The following sections provide information abouteach element. Each section begins with a briefintroductory statement, which is followed by a listof actions that describe the necessary processesand systems to effectively address the element.Figure 1 provides an overview of the essentialelements and how they fit together within theConsensus Statement. Figure 2 illustrates thetype of end-of-life care interventions that mightbe needed as a patient approaches the end of life.These interventions are built into the actions inthe Consensus Statement.essential elementsa. processes of care1. Patient-centred communication and shared decision-making2. Teamwork and coordination of care3. Components of care4. Use of triggers to recognise patients approaching the end of life5. Response to concernsb. organisational prerequisites6. Leadership and governance7. Education and training8. Supervision and support for interdisciplinary team members9. Evaluation, audit and feedback10. Systems to support high-quality care6National Consensus Statement: essential elements for safe and high-quality end-of-life care

Figure 1: Overview of the 10 essential elements in the Consensus StatementNational Consensus Statement: essential elements for safe and high-quality end-of-life care7

Figure 2: End-of-life care interventionsEncounters withhealthcareproviders incommunityand acute caresettingsHospitalisationbut returnto adequatefunction atdischargeHospitalisation,likely terminalDeathDiagnosis/progressionof life-limiting illnessLikely to die soon (medium termbut timing may be uncertain)Dying (short term but timingmay be uncertain) Acknowledgment ofuncertainty of prognosis Goal setting and advancecare planning Review by senior clinician Begin advance careplanning process in thecommunity, outpatientsetting or hospital Palliative approach for symptommanagement, and psychosocialand family support (treatingteam specialist team) Care coordination andliaison with communityservices (e.g. generalpractice, home-basedand residential agedcare services) Clear management planning(including limitations of medicaltreatment) on admission and/or after episodes of acutedeterioration Ongoing active treatment palliative approach forsymptom managementand psychosocial (may be recurrent)and risk ofin-hospital death Care coordination and liaisonwith community services(e.g. home-based andresidential aged care services) Medication review Goal setting and advancecare planning Clear managementplanning (includinglimitations of medicaltreatment) on admissionand/or after episodes ofacute deterioration Interventions for symptomcontrol, meeting spiritualand cultural needs,family support, etc. Medication review Provision of terminal care Bereavement care for familyNational Consensus Statement: essential elements for safe and high-quality end-of-life care

part aprocesses of careNational Consensus Statement: essential elements for safe and high-quality end-of-life care9

1. patient-centred communicationand shared decision-makingIt’s when [clinicians] see that they’re very much in partnership with the patient and they’re prepared to riskthemselves to get alongside the patient. Giving the patient lots of time; being empathetic; being preparedto recognise that the patient has got a whole lot of other things going on as well as their disease. Consumerkey points The patient and the interdisciplinary team areboth essential participants in discussions anddecision-making at the end of life. Substitutedecision-makers, families and carers shouldbe included, according to the patient’sexpressed wishes, and state or territorylegislative frameworks. All communication processes shouldrecognise and be responsive to the individualpreferences and needs of patients, families,carers and substitute decision-makers. Having conversations about death, dyingand the end of life requires compassion,knowledge, experience, sensitivity and skillon the part of the clinician(s) involved. A series of conversations may be neededto elicit the goals, values and wishes of apatient, and reach shared decisions aboutthe appropriate plan for their care.This essential element primarily relates to theprocess of clinicians communicating with patients,substitute decision-makers, families and carersto make decisions about care at the end of life.Depending on the needs and wishes of the patient,other members of the interdisciplinary team mayalso need to be involved in these discussions.10A number of significant events might indicatethat conversations about end-of-life care shouldoccur. In an acute health service, these includeevents when: a patient (or substitute decision-maker, careror family member, if the patient lacks capacity)expresses interest in discussing end-of-life care a life-limiting condition is diagnosed a patient who is likely to die in the short ormedium term is admitted, or deterioratesduring their admission a patient living with a life-limiting illness hashad recurrent, unplanned, recent admissions a previously well person who has suffered anacute life-threatening event or illness is admitted unexpected, significant physical deteriorationoccurs a patient is dying.The purpose of conversations about end-of-lifecare will depend on the circumstances of thepatient. In some cases, the primary purpose ofcommunicating with patients, and their familiesand carers will be to impart information. In othercases, decisions about specific aspects of care,including care of the dying, may need to be made.Regardless of the purpose of the conversation,there is opportunity to begin or continue theprocess of shared decision-making.National Consensus Statement: essential elements for safe and high-quality end-of-life care

part aprocessesof careShared decision-making is a critical part ofmaking sure that patients approaching the end oftheir lives are partners in their own care. Shareddecision‑making is more than just providinginformation to patients and their families, or askingthem questions to inform a clinically driven decision.It is a process that allows patients, substitutedecision-makers, families and interdisciplinaryteams to work together to make decisions inthe patient’s best interests, based on the bestscientific evidence available, the realities of thepatient’s clinical condition and treatment options,and the patient’s choices, values and preferences.Doctors, nurses and other involved cliniciansshould use their clinical skills and experience,and their knowledge of the patient’s values andpreferences to make recommendations that informthe decision‑making process.Maximising the input and voice of patients is anobligation for all clinicians. However, some patients– such as those with cognitive or intellectualimpairment, or severe mental illness – may notbe able to participate fully in decision-making,and the capacity of patients to participate indecision‑making may fluctuate. Supporteddecision-making may be necessary for suchpatients. Supported decision-making means thatclinicians assess the patient’s decision‑makingcapacity and maximise opportunities forparticipation by patients with impaired capacity.This might mean deferring decisions until thepatient is more able to participate – for example,until treatable causes of impaired decision-making,such as depression or delirium, are ameliorated.Where this is not possible, clinicians should workwith carers and families to support patients to be asinvolved in decision‑making as their capacity at thetime will allow.actions1.1 linicians and patients should identifyCopportunities for proactive and pre-emptiveend-of-life care discussions, to increasethe likelihood of delivering high-qualityend-of-life care aligned with the patient’svalues and preferences, and to reduce theneed for urgent, after-hours discussionsin emergency situations.1.2 T he clinical team should work with the patient,family and carers to identify the substitutedecision-maker, family spokesperson or otherkey contacts that the patient wishes to beinvolved in discussions about their care.1.3 I n some cultures, mainstream assumptionsabout death and dying, and about patientsand families as decision-makers maynot be correct. Culturally appropriatedecision‑maker(s) should be identified as earlyas possible so that strategies can be put inplace for obtaining their input into discussionsabout end-of-life care.1.4 C linicians should seek to understand, andbe respectful, sensitive and responsive to,the individual preferences and needs of allpatients, substitute decision-makers, familiesand carers, regardless of aspects of identitysuch as culture, religious belief, genderor sexual preference.When opportunities for shared or supporteddecision-making are limited or impossible –for example, because the patient is dying suddenlyand unexpectedly – clinicians should check thatthe patient, substitute decision-maker, family andcarers have a shared understanding of what hasbeen discussed and the subsequent plan of care.National Consensus Statement: essential elements for safe and high-quality end-of-life care11

1.5 W henever possible, clinicians should preparefor having conversations about end-of-lifecare. Necessary preparation may include: reaching consensus among all of the clinicalteams involved in the patient’s care aboutthe patient’s prognosis and what treatmentoptions are appropriate to recommend ensuring familiarity with the patient’shistory and current condition (this mayinclude discussion with key communitycare providers), their family structure,and cultural needs and preferences arranging adequate time for uninterrupteddiscussion ensuring that patients have accessto their regular communication aids arranging for the appropriate people to bein attendance – ideally, this will include thepatient; their substitute decision-maker,carers and family members; the most seniordoctor available; the nurse responsible forthe patient’s care; and other members of theinterdisciplinary team, such as interpreters,Aboriginal support workers, chaplains orsocial workers ensuring that discussions can be held in anappropriately quiet and private environment.1.6 T he patient, substitute decision-maker,family and carers should be provided withwritten information about which clinician isresponsible for leading and coordinating theircare. Whenever possible, this clinician shouldbe directly involved in discussions about thepatient’s end-of-life care.1.7 W henever possible, clinicians should work withpatients, families and carers to ensure that keyfamily members, substitute decision-makersand carers are present during end-of-lifediscussions. This will ensure that consistentmessages are given about treatmentoptions, their likelihood of success, risks andprognosis. This is particularly important whenpatients are in the process of transition to theterminal phase, as conflict and uncertaintyamong family and carers can result inavoidable suffering.121.8 C linicians should provide an honest andstraightforward summary of their clinicalassessment of the situation, what theyconsider to be appropriate and feasibleoptions for treatment, any risks and potentialside effects, and the likelihood of the patient’scondition improving in response to suchtreatment. Clinicians should be compassionateand sensitive, use plain language, and avoidthe use of medical jargon.1.9 C linicians should express empathy for thepatient’s situation. They should allow adequatetime for those involved to absorb, process andreact to the information they are being given.Multiple discussions may be required.1.10 E nd-of-life discussions should routinelyinclude the provision of information aboutorgan and tissue donation for transplantation,in circumstances where donation is possible.These discussions should be conductedwith advice from the state or territoryDonateLife agency and should preferably beled by clinicians who have attended the coreFamily Donation Conversation workshop.1.11 C linicians should check that patients, familiesand carers have been provided with sufficientsupport to make decisions. This includessupport for patients, substitute decisionmakers, families and carers who havecommunication difficulties associated withcultural and linguistic diversity, or decisionmaking difficulties associated with disability,mental illness or cognitive impairment.1.12 C linicians should clearly document the contentof the discussion and any agreed plan of carein the patient clinical record. Any unresolvedissues that require further follow-up shouldalso be documented, along with a planfor follow-up.1.13 T he content of the discussion and plan of care,including any limitations of medical treatment,should be communicated to all teams involvedin the patient’s care, including relevantcommunity care providers.National Consensus Statement: essential elements for safe and high-quality end-of-life care

part aprocessesof care2. teamwork andcoordination of careTo be able to plan appropriate death as you would plan appropriate discharge at a multidisciplinary level,that would be good. Nurse – public hospital focus groupkey points For a patient’s end-of-life preferencesand needs to be fulfilled, members of thehealthcare team(s) who are involved in theircare need to work together effectively. The healthcare team includes theinterdisciplinary team in the health service;the patient and their substitute decisionmaker, family and carers; and communitycare providers, such as those working incommunity and residential aged care facilities,and general practices. Processes should be in place to supportcare coordination and continuity, particularlyat the interface between different servicesand teams (e.g. between the hospital andcommunity-based services, or between thetreating team and after-hours care providers).Patients often receive care from a range oforganisations with different systems, rolesand approaches to managing end-of-life care.Interdisciplinary teams include individuals withvaried experience, values and perspectives onplanning and providing end-of-life care. Unlessan identified person takes overall responsibilityfor coordinating a patient’s care, and ensuringeffective communication and collaboration,patients can receive discordant informationand poorly coordinated care.The interdisciplinary team should respect anduse each other’s expertise, and that of the patient,substitute decision-maker, family and carers. Foreffective teamwork, roles and responsibilities needto be clear, and processes need to be in place forthe organisation and exchange of information.The patient’s goals of care and the treatmentplan need to be clear to all members of theinterdisciplinary team, so that care can beeffectively coordinated. This includes ensuringeffective communication and liaison with careproviders in the community, such as generalpractitioners, nurse practitioners, communitynursing services, Aboriginal health services,home care workers, and manage

where end-of-life care is indicated for adults who are clearly approaching the end of their lives. It may be particularly appropriate to apply the elements of the Consensus Statement at two particular times near the end of life: when a patient is likely to die in the medium term (i.e. within the next 12 months), but episodes of