2Illness transitionFor most patients with cancer, the initial aim and hope is for cureFor those who develop recurrent malignant disease, there is the likelihood that the disease is incurableThe transition from curative intent to palliation is difficult for many, often resulting in despair, denial, depression, anxiety or resigned indifferencePatients and their carers require sensitive guidance through this transition
3Goals of Care Curative (“beating it”) Cure or durable remissionPrognosis: yearsPalliative (“living with disease, anticipating death”)Disease incurable and progressivePrognosis: weeks, months (but can be years)Terminal (“dying very soon”)Death imminentPrognosis: hours or daysAshby M, Stoffell B.Therapeutic ratio and defined phases: proposal of ethical framework for palliative care.BMJ 1991; 302:
4Key questions if ceasing active treatment is considered Are the clinical facts of the case well established? Is the diagnosis correct?Has sufficient time elapsed to be reasonably confident that there is no reasonable prospect of substantial improvement or recovery?Is there consensus among the clinicians about the diagnosis, prognosis and most appropriate course of medical action? Is a case conference necessary?
5Key questions if ceasing active treatment is considered Identify the key decision maker(s) in the family or friendsHave the family, carer(s) or legally appointed agent been advised of the above? Have they had a chance to express their opinions, and been involved in the decision making process?Has the patient’s GP been involved?
6Key questions if ceasing active treatment is considered Has the decision to stop active treatment been documented? The plan for implementing it may involve a “time trial” of continued life-sustaining treatment. How will subsequent objections to the decision be dealt with?Has a consultative palliative care team referral been considered?Ashby MA, Kellehear A, Stoffell BF.Resolving conflict in end of life care.Editorial MJA Vol 183 No 5: 5 Sept
7Progressive, life limiting illness management approach: Patients, primary carers and familiesare provided with information to allow them to make informed decisionsare encouraged to participate in the development of their care plan initially and on an ongoing basisReferral to palliative care specialist services when needs are, or will become complexComplex pain or symptoms not responsive to established protocolsComplex psychological and/or social needsIncreased risk of complicated bereavement for the primary carer and familyA Guide to Palliative CareService Development:A Population based approachPalliative Care Australia Feb 2005
8Negotiating Ceasing Active Treatment The patient and caregivers deserve a frank assessment of the likelihood of response to treatment and its durationDeal with the control issue - a feeling of loss of control may be a major component of patient’s distressBoth the patient and the doctor need to recognise that doctors do not stop treating patients when they stop active therapy. Rather, a different treatment program has been chosenTo continue toxic treatment solely to maintain hope of some response is inadequate medicine. To continue to allow patients and caregivers to put their hope in things that are highly likely to fail (eg, further chemotherapy) is at best ill advised and at worst avoiding the real issue.
9Negotiating Ceasing Active Treatment There comes a time when a patient with incurable disease is best served by placing his or her hope in things that will not fail, be it a doctor’s ongoing care, the love of the family, religious beliefs, and so on.Show the patient, and their family that you careDon’t cut the patient loose at this timeMultidisciplinary team is needed to provideSpiritual and psychosocial supportSymptom controlEnd of life careBereavement supportHarnett PR, Moynihan TJ. But Doctor, What Have I Got to Lose…?JCO: Vol 19(13) July 1, 2001
10Negotiating Ceasing Active Treatment Good communication with GP essential. GP may be asked for another opinion by patient and/or carersAppropriate involvement of nursing resources, hospital and community. At this stage, good nursing care may become the most significant need for patients and carers
11Preserving dignityPatients are exposed to many events and situations during their illness which may enhance or impede their dignityHealthcare processesIllness related complicationsFamily systemsWelfare systems
12Maintaining dignityContinuity of self - a sense that the essence of who one is, continues to remain intact, despite advancing illnessRole preservation - the ability to continue to function in usual rolesLegacy - the comfort in knowing that something lasting of oneself will transcend deathMaintaining pride - the ability to maintain a positive sense of self regard or respectMaintaining hope - an ability to see life as enduring, or having sustained meaning or purposeAutonomy/controlAcceptance - the internal process of resigning one’s self to changing life circumstancesChochinov H M, Dignity and the Eye of the BeholderJCO: Vol 22(7) April 2004
13Challenging communication tasks - 1 Doc, how much time do I have left?Acknowledge uncertaintyForetell a general, realistic time frame - days, days to weeks, weeks to monthsProvide realistic hopeRecommend “doing the things that should be done”Provide realistic assurance that you’ll be available to help the patient through the dying processRefer for emotional and spiritual support in “dying well”Ask patients what they want to accomplishEncourage additional questionsLoprinzi C et al Doc, How Much Time Do I Have?JCO Volume 18(3), February 2000
14Challenging communication tasks - 2 Goal setting frameworkCreate the right settingAsk what the patient/family knowExplore what they are expecting or hoping forSuggest realistic goalsRespond empathically to the emotions that will ariseMake a plan and follow throughReview and revise goals periodicallyVon Roenn JH, von Gunten CF Setting Goals to Maintain HopeJCO Volume 12(3), 1 February 2003
15Addressing Spiritual Care: Calling for Help A physician or health care professional who shows interest in spiritual care expresses concern for the “whole person” who has cancer.The simple screening question, “What role does faith play in your life?”could be all that is needed to assess the dimension of faith in a patient, and to point the way for future support.Steer CJ & Lee C. Addressing Spiritual Care: Calling for HelpJCO Volume 22(23), December 1, 2004
16Addressing Spiritual Care: Calling for Help Spirituality relates to an individual’s capacity to seek meaning and purpose in life.Cancer commonly affects the spiritual dimension of patients with cancerReligious beliefs and practices play a significant part in the way that some patients cope with their disease and how they make sense of what is happening to them.For many patients, religious faith plays a major role in their livesFaith provides patients with emotional support, social support and a root to meaning, all of which help them cope with the diagnosis and treatment of cancerSteer CJ & Lee C. Addressing Spiritual Care: Calling for HelpJCO Volume 22(23), December 1, 2004
17Palliative Care WHO Nov 2003 Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.WHO Nov 2003
18Palliative CareProvides relief from pain and other distressing symptoms;Affirms life and regards dying as a normal process;Intends neither to hasten or postpone death;Integrates the psychological and spiritual aspects of patient care;Offers a support system to help patients live as actively as possible until death;Offers a support system to help the family cope during the patients illness and in their own bereavement;
19Palliative CareUses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;Will enhance quality of life, and may also positively influence the course of illness;Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
20PALLIATIVE CARE - WHEN?In incurable progressive disease, there is a gradual transfer of focus from active treatment to a focus on quality of life and symptom control, the dying process and subsequent bereavementACTIVE TREATMENTBEREAVE- MENTDEATHDIAGNOSISPALLIATIVECARE
21Palliative Care Pain Management Common Symptom Management CommunicationFamily SupportEthics and medical decision-making at end of lifeGrief and BereavementMultidisciplinary Team WorkEmotional Care of Self
22Palliative Care Relief of suffering Quality of Life Comfort Holistic careDying with dignity
23Multidiciplinary team NursingMedicalPharmacyPhysiotherapyOccupational therapyDiversional therapySocial workPsycho-oncologyPsychiatristsClinical psychologyBereavement counselorsPastoral careVolunteers
24PALLIATIVE CARE - COMMUNITY GP “case manager”Generalist Community Nurse - GCNClinical Nurse Specialist - CNSClinical Nurse Consultant - CNCPalliative Care Medical OfficerCommunity Palliative Care Specialist
25Advanced care directives - aims Identifying what is important as a patient approaches death, especially the place of life sustaining treatmentAchieve a sense of controlEngage others in decision making, family friendsProvide flexibility in decision makingAdvance care directions are optionalUsing Advance Care DirectivesNSW Dept of Health 2004
26Advanced care directives - barriers Time constraintsDiscomfort in talking about death: patient, family, health professionalsPatient perceptions about who should or does control medical decision makingFears about being able to change one’s mindLack of knowledge about availability of advance care directives, orHealth professionals may not appreciate the legal standing of advance directivesUsing Advance Care DirectivesNSW Dept of Health 2004
27End of Life Care - Dying Recognise it Acknowledge it Respect it Treat symptomsSupport carers
28TERMINAL CARE PHASEThe typical features of a person in this phase include the following:Profoundly weak.Essentially bed bound.Drowsy for extended periods.Disoriented for time and has a severely limited attention span.Increasingly disinterested in food and drink.Finding it difficult to swallow medication.
292 ROADS TO DEATH THE DIFFICULT ROAD Confused Tremulous Restless HallucinationsNormalMumbling DeliriumSleepyMyoclonic JerksLethargicSeizuresObtundedTHE USUAL ROADSemicomatoseComatoseDead
30HANDY HINTSDetermine early where the patient would like to be cared for: home, hospital, hospiceIdentify barriers that may prevent this from occurringEncourage flexibility. Circumstances may change during the final stageUse only medications essential for symptom control. Stop other medications and continue to offer opioids.Remember accumulating serum concentrations of active drug and metabolites may lead to toxicity and terminal delirium.Recognise the signs of the dying process.
31Grief and BereavementBereavement support is integral to palliative careGrief after loss is a normal process, but may be complicated and compromise the health of an individualRoutine bereavement care helps to identify people at riskBurden of grief can last for yearsNeed to pay attention to cultural differencesExcellent resources are available for grief managementMaddocks, I.Grief and Bereavement.Medical Journal of Australia15 Sept 2004, Vol 179, No 6 Supplement
32Bereavement tasks Accept the reality of the loss Experience the pain of griefAdjust to an environment from which the deceased is missingReinvest energy in other possibilitiesWorden, J. Grief Counselling and Grief Therapy.London: Tavistock, 1991
33Bereavement Resources Palliative care bereavement servicesGP’sCommunity nursing and mental health teamsPsycho-oncology servicesSocial workPrivate bereavement servicesPastoral care
34Facing the consequences of a progressive, life limiting illness can exhaust the physical and emotional resources of patients, primary carers and their families, and indeed can also deplete those of the health care professionals who care for themA Guide to Palliative CareService Development:A Population based approachPalliative Care Australia Feb 2005
35Impacts on carers Stress Disruptions and emotional strains Health problemsMental health issuesReduced life opportunitiesFinancial strainsCaring for a Dying Person in AustraliaPalliative Care Australia May 2004
36Positive aspects of caring Carersexpressed strong positive emotions about their care giving experiencesfound significant meaning in their rolesfelt self satisfaction knowing that they are doing a good jobGrbich, C. Parker, D. & Maddocks, I. (2001)The Emotions and Coping Strategies of Caregivers ofFamily members with a Terminal Cancer.Journal of Palliative Care, 17(1), 30-36