2INTRODUCTION: Learning Outcomes: Understand a Palliative Approach and support the incorporation and ongoing management of ACD’s within the care plan.Be able to support clients to identify their preferences for quality of life choices.Be able to take action to assess and alleviate pain and other end of life symptoms.Identify and manage own responses in self and others.
3ASSESSMENTSThere are 3 parts to this assessment.. Students must pass each part.PART A: Open book take home quiz.PART B: Case Study. Mr W.Part 3: Role play, day 2 in class.The assessments are due in 2 weeks.
4What is palliative care. What does it mean to you?
5What is Palliative Care? A Palliative Care approach aims to improve the quality of life for a person who is dying and their family, whether as a result of disease, illness or the ageing process.The word ‘palliate’ means to relieve; palliative care therefore is care that relieves the physical and mental distress of dying.
6What is palliative care? continued Palliative care is a multi-disciplinary approach that involves medical, psychological and spiritual responses to the dying person, their family and friends.People are usually encouraged to live as actively as possible until deathPalliative care affirms life and regards death as a normal part of life.
7Definition: World Health Organization 2002 Palliative care is an approach that improves the quality of care of patients and their families facing the problems 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.
8Dying in Australia 134,000 deaths in Australia each year 64,000 are considered to be ‘expected deaths’ – when death is related to a diagnosed life limiting illness1/3 of patients whose death is expected are seen by palliative care services with the balance by primary care servicesResponsibility to all Australians
10WHERE can a palliative approach be provided? A palliative approach can be used in any setting.A palliative approach can be provided in the resident’s familiar surroundings if adequate skilled care is available, which reduces the need for transfer to an acute setting; thereby, avoiding potential distress to the resident and his/her family.The reality of the above should be discussed early in the care planning.
11WHO can provide the care?? A palliative approach is best provided by a multidisciplinary team. They may include:# Specialist Physicians and GP’s# General nurses # Specialist nurses# Volunteers # Pharmacists# OT’s # Physiotherapist# Social workers # Dieticians# Carers #Diversional Therapist#Chaplains # Pain specialist
12WHO DECIDES??The decision to implement a palliative approach should not be based on the individual’s clinical stage or diagnosis; rather, it should be offered according to the needs of the individual.The decision to consider a palliative approach should be made in collaboration with the resident, the family and the team.Lack of openness with residents and their families may lead to conflict and confusion about care goals.
13ADVANCED CARE PLANNING Advanced care planning empowers the person to state their wishes in writing, in accordance with how they define quality of life.By doing so, the burden of responsibility is removed from the surrogate and control is maintained by the resident.As with preparing of a will, the plan cannot be attended too early.When the time comes and the resident is no longer able to validate decisions it will be of great comfort to loved ones knowing the decisions they are maintaining were those chosen.
14An ACD can be an individual process, and does not have to involve family members. However, evidence suggests that many people prefer them to be involved.The process of advanced care planning may provide opportunity for discussing dying wishes, settling interpersonal differences, may prevent later conflict over substitute decisions about treatment, and improve communication amongst the family members.Advanced care planning is a continuum of treatment choices that may be reviewed as the persons condition, and possibly preferences change.
15End of life strategies: Goals of treatment may need to be re-negotiated several times.Good open communication, regular team meetings, continuity of care (nursing and medical),a culture which values challenging and constructive debate –all these contribute to improving team functioning which is an essential factor in managing the complex interface between acute and palliative care.Sensitive and careful management of the transitional phases in disease is integral to successful palliation
16For patients and their families quality of life will be maximised where the goals of palliative care are valued, and expert symptom management is practised.An understanding of the psychosocial stressors involved in experiencing chronic illness will assist in good communication, both within the health care team and the patient/family.Respect for the ability of the patient and family to participate in their own care is fundamental to the practise of palliation
17Legal Issues in palliative care Nurses working in palliative care need to practise within the legal controls of the jurisdiction in which they practise and adhere to the procedural guidelines.Pain management is a fundamental part of palliative care and one that has civil and criminal implications.The importance of accurate documentation cannot be overstated.An advanced care directive that complies with the requirements is legally binding in NSW.Failure to comply with ACD may result in the health professional incurring criminal or civil liability.
18Patients Rights The right to choose or refuse: While a patients consent cannot justify that which the law forbids, for example the direct taking of life, it can justify that which the law allows, for example, the termination and refusal of medical treatment.A person is completely at liberty to undergo treatment, even if the result of doing so will be that he dies( Kennedy and Grubb, 1994: 163, )
19Before life-sustaining treatment is discontinued the patient must be: competentfree from coercion or controlling influencefully aware of the implications of the proposed course of action.Legislation allows a person to appoint someone to make decisions about medical treatment on their behalf if they become incapable of making decisions for themselves.Such an appointment is made under the ‘enduring power of attorney (medical treatment)’, also referred to as a ‘living will’
20Cultural Issues:Culture is a way of life that is shaped by values, beliefs and practises that are learnt from experience of being in the world and from experiences transmitted through generations.All residents require careful assessment to ensure assumptions are not made for cultural needs based on a resident’s language ability alone.To provide cultural appropriate palliative care requires first that a persons culture is understood and, secondly, that health care staff respect that culture.Australia is a multi cultural country. It is also possible that the family unit comes from more than one culture. This may require unique handling.
21Approximately 120 residential services provide care operated by ethnic community organisations, with additional community resources specifically allocated for Aboriginal and Torres Strait Islander people and those from a diverse range of cultural and linguistic backgrounds.A specific program known as Partners in cultural Appropriate care operates throughout Australia. Contacts:
22Multicultural Health Communication service Website: www. mhcs. health Multicultural Health Communication service Website:Transcultural Aged Care Services (NSW)(02)Ethnic Communities Council of QLD(07)Multicultural Aged Care (SA)(08)Migrant Resource (TAS) (03)Anglican Aged Care (VIC) (03)Multicultural Aged Care (WA) (08)
23Spiritual Care:Spiritual care involves assisting people to articulate those things that are important to them personally.Spiritual care involves sensitive listening, rather than providing answers. It is not necessary for the nurse to share the same spiritual beliefs as the person in order to understand the persons spiritual needs, nor is it the aim of spiritual care to impose your own views onto that person.It is important that every effort is made by staff to enable the person to have access to spiritual supports and spiritually related items.
24COMMUNICATIONRedpath (1998) suggests that communication skills of the health professional are central to successful patient decision making, and negotiation of optimum palliative care outcomes.It is also said that nurses are the most frequent observers of patients’ psychological and emotional responses to illness and treatment (Fincannon,1995).Therefore it is important to acknowledge the valuable role communication and negotiating skills can play in palliative care.
25Cultural context of communication When learning English as a new language, people go through 5 stages.Hearing what is said in english.Translating it into their own language.Constructing the response in english.Responding in English.When broken down in this way, the room for error is obvious.Clear communication is an essential component of palliative care so language barriers need strategies put in place to overcome them.
26Dealing with conflict & resolution CONFLICT results from individuals or groups wanting different things. Differences can include:Differences in values, Different interpretation of the facts, Different ideas.NEGOTIATION is a process of collaboration. It employs the skill of:Listening, questioning, Speaking and Body language.
27Body language in communication Nonverbal communication, known as “body language” sends strong positive and negative signals. This is how much it influences any message:Words 8%Tone of voice 34%Non verbal cues 58%Body language speaks for itself and can be of enormous comfort to the patient and carers …… it can also create the opposite.
28The power of listeningSometimes in palliative care it is more important to listen than to speak.Sometimes patients and carers alike want to discuss their fears but don’t want to burden their loved ones and they will turn to you.The philosopher Epictetus stressed the power of listening in this quote:“Nature gave us one tongue and two ears so we could hear twice as much as we speak”
29Consenting to or refusing food is an expression of a persons autonomy. NUTRITION AND HYDRATION:Consenting to or refusing food is an expression of a persons autonomy.One of the most difficult ethical issues that families and health care workers confront is uncertainty about how to manage residents who refuse food and / or fluids.‘There is little evidence that tube feeding substantially prolongs life, and it carries additional risks that usually will only add an additional burden of discomfort for dying patients’ ( Finucane,Christmas & Travis, 1999 )
30Factors affecting poor nutrition Advanced dementiaApathy / loss of interestFatigue / increased generalised weaknessDepressionAdverse medication side effectsShortness of breathNauseaAnorexia assoc with deteriorating condition
31Potential reversible causes Metabolic disorders such as thyroidismChronic infectionsAlcoholism (nutritional malabsorption)Oral health factorsDepressionVitamin deficienciesNausea and vomitingCultural food issuesAdverse medication side-effects
32DehydrationDehydration in the end-of-life stage has not been found to produce distressing symptoms or shorten lifespan and may in fact be beneficial.Benefits include:The production of a natural analgesia-endorphins and dynorphinsKetoacidosis takes away the feeling of hunger and results in further analgesiaDecrease in urinary output and diminished respiratory secretions
33Nutrition at End-of-life The desire to feed stems from the belief that dehydration in a person close to death is distressingArtificial feeding will not necessarily increase comfort or quality of life during end stageDehydration should not be confused with thirstThirst is best treated by small amounts of fluid and ice chips offered frequently and good mouth careThe wishes of the resident and their family are paramountResident’s best interest and preferences should guide decision making
34Artificial HydrationArtificial hydration should be considered in the palliative approach when dehydration results from potentially correctable causes;Over treatment of diuretics and sedationRecurrent vomitingDiarrhoeahypocalcaemia
35Adverse effects of fluid accumulation caused by artificial hydration at end-of-life: Increased urinary outputIncreased fluid in GI tract – vomitingPulmonary oedema, pneumoniaIncrease in respiratory tract secretionsAscitesAll of the above potentially causing more discomfort for the palliative patient.
36Nausea and vomitingNausea is sometimes prolonged and can be less easily controlled than vomiting.Nausea can occur without vomiting ( the reverse is also true )It is important to try to identify the cause of nausea or vomiting in order to manage the symptoms.
37Causes of nausea and vomiting Latrogenic - medications, chemotherapy, radiotherapyMetabolic – hypercalcaemia, UTI, altered tasteOrganic – constipation, bowel obstructionPsychological – anxiety, anticipatoryOther – odour from food or woundsCause is often unknown at end-of-life
38Non – pharmacological therapy Correct reversible causesEnvironmental factors – fresh air, absence of offensive smellsOffer non-odourous foods, eat slowly & small amounts frequentlyAvoid lying flat before and after mealsDiversional therapies – relaxationMaintain good mouth care
39Pharmacological management General guidelines include:Determine the most likely causeIdentify contributing factorsSelect an appropriate anti-emeticSelect appropriate route for drug administrationConsider possible toxicityPossible benefit versus potential burdenEnsure patient complianceEvaluate regularlyGive prophylactically
40Bowel care in palliation Bowel symptoms such as constipation or faecal incontinence can have a negative effect on a resident’s quality of life.Bowel care is a key component of a palliative approach as residents may be taking opioids, which are a major cause of constipation.Constipation may occur with:Limitation to fluid intake in faecal wasteLimitation to movement of faeces through colonLimitation to muscle contraction
41Bowel management Initial assessment to identify normal bowel habits Daily documentation of bowel habitsProphylaxis – essential part of managementEarly identification of abnormal bowel habitsIdentify cause – diet or drug inducedPrompt and individually tailored treatmentsMinimization of interventions that can cause loss of dignityComfort for the resident
42Types of Constipation PRIMARY: Inadequate dietary fibre / dehydration Reduced mobility / reduced muscle toneWithholding faecal evacuationSECONDARY:Partial bowel obstructionSpinal cord compressionconditions such as hypercalcaemiaLATROGENIC:Introduced by administration of drug therapies
43Symptoms of constipation Nausea and vomitingStraining during defecationInfrequent bowel movementsFeelings of incomplete emptying after bowel movementsFrequent small amounts of diarrhoeaRectal pain on defecationStomach pain, distension or discomfortFaecal incontinence
45Defining Pain:ACUTE PAIN: Is usually due to a definable acute injury or illness. It has a definite onset and it’s duration is limited and predictable. It is accompanied by anxiety and clinical signs of sympathetic overactivity: tachycardia, tachypnoea, hypertension, sweating, pupillary dilatation and pallor. Acute pain may also occur in a patient with chronic pain.INCIDENT PAIN: Occurs only in certain circumstances eg: movement / procedures
46CHRONIC PAIN: Results from a chronic pathological process CHRONIC PAIN: Results from a chronic pathological process. It has a gradual or ill-defined onset, continues unabated and may become progressively more severe. The patient appears depressed and withdrawn and, as there are no signs of sympathetic overactivity, they are frequently labelled as “not looking like someone in pain’. Patients with chronic pain may exhibit depression, lethargy, apathy, anorexia and insomnia.Chronic pain requires REGULAR use of analgesics to control pain with breakthrough analgesia for additional acute episodes.
47As noted by Lord Devlin in R v Adams (Bodkin) (1957) even though direct killing is unlawful: ….. There is still much for a doctor to do that he is entitled to do all that is proper and necessary to relieve pain and suffering, even if the measures he takes may incidentally shorten life.Criminal law requires intent. The intent to relieve pain is different from the intent to kill, which does and should lead to criminal charges.
48Pain management requires a systemic and holistic approach to treatment that is tailored to the individual’s physical, psychological and spiritual needs.As Dickinson stated,“ Pain is a subjective sensation and therefore pain is what the individual says it is and NOT what others think it should be”.Recognition of an emotional and psychological component to pain points to the need for a multidimensional assessment for effective pain management.
49Principle of pain management Regular around the clockOral medication if possibleAdjuvants for side effects
51Barriers to effective pain management: Some include:Lack of knowledge of pain assessment among some nurses and doctors.Overcoming cultural beliefs. Eg: a recent study found some indigenous Australian communities feared morphine was given at the end of life to ‘get rid of me” (them).A belief that pain relief should only be given if pain was currently present.Poor communication.
52Pain assessment tools: Pain assessment tools have been developed to attempt to overcome the incongruence between nurses perception of pain and the patient’s.Some assessment tools used are:The ABBEY pain Scale.The FUNCTIONAL Pain scale. (FPS)The NUMERICAL Rating Scale. (NRS)The McGILL Pain Questionnaire (MPQ)The BRIEF Pain Inventory (BPI).
53Complementary therapies In 1995 RNSH (Sydney) analysed 319 patient questionnaires where the question was asked “Why do you use alternative treatments” Reasons given include:New source of hope.Preference of natural therapies.Impression of non-toxic therapy.Supportive alternative practitioner.Greater personal involvement.It is important therefore to endorse the patient’s desire and choice of empowerment.
54Some complementary therapies include: CounsellingMassage /relaxation techniquesAromatherapyNaturopathyTherapeutic touch /Reiki /ReflexologyHerbal / traditional Chinese medicinesCreative visualisationMusic therapyMeditation /hypnotherapyAcupressure / acupuncture
55It is necessary to recognise the importance of offering patients the choice of a range of therapies BUTIf nurses are to incorporate complementary therapies into nursing practise, certain issues need to be addressed including:TrainingStaffing levelsTimeInformed consentDocumentationGiven the above it is important that management supports the use of complementary therapies.
56Physiological changes In the final stage when life-sustaining systems begin to shut down, physical, mental, emotional and spiritual changes may occur over weeks, days or hours. These can include:Increased weakness, fatigue. Loss of interest in everyday things. Decreased appetite and fluid intake. Difficulty swallowing. Neurological dysfunction, confusion. Pain. Incontinence. Restlessness. Increased sleepiness. Changes in body temperature and colour. Loss of ability to close eyes. Breathing difficulties.
57Nursing careAs the dying persons physical changes occur so will their nursing care needs.These needs include:HygieneIncontinence carePressure area careOral and eye careBowel carePain / comfort managementCare of respiratory difficultyPsychological and spiritual care
58Unexpected Alertness and Energy Often a day or two or even a few hours before death, the person may have a surge of energy, wake up, become alert, can sometimes eat or drink or talk and spend some quality time with loved ones.This can be a very precious time that doesn’t often last long.Nurses will often refer to it as “ the calm before the storm”Reliving this time is common following the passing of the person by those left behind and can be very comforting.
59Signs of Impending Death Increased anxiety, restlessness, confusionLoss of interest in daily activitiesLoss of interest in eating and drinkingLethargyGradual cooling of skin, becomes pale, grey or bluish in colourThe person becomes less responsive and eventually unresponsiveAbnormal breathing pattern, known as Cheyne-stokesFast weak pulseShutdown of circulation to the extremities, with the development of cyanosis
60Signs of Clinical Death These include:Absent heartbeat and respirationsPupils fixedColour turns to waxen pallor as blood settlesBody temperature dropsMuscles (sphincter) relax, often causing incontinenceEyes may remain openJaw falls openThe focus of care then shifts to those grieving.
61Care after Death A Medical Officer or RN will confirm death Respect the person in death as in lifeThe person’s after death wishes are followedPersonal hygiene is completed with the same care and attention as if the person was still alive, using standard precautions and safe manual handlingIf a Coroner’s case is suspected then the body is not to be washed, dressings, cannulae and catheters are not to removed.Give support to the family and friends
62Loss and GriefDuring the palliative phase and following the death of a person those involved will experience various degrees of loss and grief.The people involved will include the dying person , their loved ones and the staff. The staff effected can be varied.To understand how we may assist them and ourselves we must first understand the effects that loss and grief have on the human body.
63LOSS: Loss can be actual, or perceived or permanent, and it occurs when someone or something can no longer be seen, heard, known, felt or experienced.GRIEF: Grief is the natural response to loss. It includes a range of responses: physical, mental, emotional and spiritual. These are usually associated with unhappiness, anger, guilt, pain and longing for the lost person or thing.Each person will grieve and recover in their own way.
64NORMAL GRIEF REACTIONS: EMOTIONAL MENTALAnxiety DisbeliefFear ConfusionSadness PreoccupationAnger Sense of presenceGuilt HallucinationsInadequacyReliefLoneliness
65PHYSICAL REACTIONS TO GRIEF: Hollowness in the stomach.Tightness in the chest and throat.Over sensitive to noise.A sense of depersonalisation.Breathlessness.Muscle weakness.Lack of energy.Dry mouth.
66STAGES OF GRIEVING:Denial and isolation.Anger and resentment.Bargaining Depression.Acceptance.Factors that can influence the reaction to grief are:Stage of growth and development.Cultural and spiritual beliefs.Socioeconomical status.Relationships with significant others.
67Strategies for assisting a person to deal with loss and grief. Reflective listening.Provide appropriate environment.Accommodate the individuals needs eg: Pets, music, Exercise, Reminiscence.Use of experts; clergy, grief counsellors.Accommodate cultural and religious customs.Support and encourage loved ones participation in patient care if requested.
68Characteristics a nurse requires Caring and understandingTo be able to accept others beliefs and customs (even when not your own)Empathic approachTo take a risk and get involves (not afraid of intense feelings)To be able to acknowledge lossTo support as a person moves through the stages of grievingTo work with and support colleagues
69How to cope ?Working within a team that ensures the well being of it’s members is a vital component to providing holistic palliative care.Past personal and professional experiences of staff will greatly influence how they cope in different situations.Staff need to be encouraged to use resources available to them when needed.Communicate and ‘look out’ for your colleagues and together you can make a difference.
70When a patient dies, you are entitled to grieve. How you reconcile your personal feelings of loss with your sense of professionalism is important as unresolved grief will wear you down.It is only human to hurt, to grieve when a person who has influenced you in some way has died.Supporting a patient and their loved ones in the final moments of life is a privilege and comes with personal rewards.‘No one ever complained that someone cried; but they have that no one cared’ – workcover NSW.
71References www.who.com/palliativecare TAFE NSW.2006, Aged Care in Australia a guide for aged care workers. Southwood Press