End of Life Care
Careful consideration should be given to the goals and level of intervention for of older adults with chronic disease, as discussed throughout the Clinical Information Sheet on specific conditions available in this Kit.
This Clinical Information Sheet has been developed to assist RACF staff, medical practitioners and relevant professionals (pharmacists, allied health clinicians) involved in the management of residential aged care patients at the end stage of life.
This CIS covers:
About End-of-Life Care; Making Care Decisions for the Final Stage of Life; Diagnosis of Dying; Developing a Management Plan; Symptom Assessment; Management of Physical Symptoms; Psychological Support; Care After Death; and Sources of Information Reference Cards:
Liverpool Care Pathway for the Dying Patient
Memorial Symptom Assessment Scale
Edmonton Symptom Assessment System
Palliative Care Visual Analog Scale
Spiritual Involvement and Beliefs Scale
This clinical information sheet is a guide only. It should be used with consideration to the:
Resident’s preferences, existing medical care plans, and advance care plan; Health professional’s role, knowledge, preferences and professional experience; Policies and resources available within the RACF; Requirements of local professional registration and regulatory bodies; and Relevant local legislation.
About End-of-Life Care
Older adults in RACF have numerous medical diagnoses that, in isolation or combination, ultimately contribute to the resident’s death [1]. As many as 20% of older Australian adults die in residential aged care, and despite international focus on promoting a dignified death, many patients die in distress and discomfort, without adequate support or relief of symptoms. Ensuring every resident has a good death is as important within RACF, as it is in hospice, home and acute care [2].
End-of-life care is considered appropriate when the resident is in the final days of his or her life [3]. The focus of care becomes promoting the resident’s quality of life and relieving end-of-life signs and symptoms rather than postponing death [1, 3]. Goals of end-of life care include [1, 3]:
Control of pain; Control of distressing physical symptoms; Psychological, social and spiritual care; Upholding the resident’s dignity and personal wishes; and Helping families cope with the resident’s impending death.
Making Care Decisions for the Final Stage of Life
In caring for older adults in the end stages of life, decisions are often required regarding the level of treatment that is appropriate. In the final stage of life aggressive management usually has little benefit and may actually cause more discomfort and suffering for the resident. The health care team, together with the resident and family, face the challenge of making often difficult decisions regarding disease management [1]. Table One outlines the four basic principles of ethical decision-making.
Table One: Principles of ethical decision making [1, 4]
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Principle
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Explanation
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Implications in RACF setting
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Autonomy
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The concept of a person having freedom of action and power over oneself in as much as this does not impinge upon the autonomy of others.
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Informed consent should be obtained from the resident before any action is implemented. Not to deceive residents, (e.g. withholding information about their, illness), unless they clearly wish to be deceived. The resident’s confidentiality should be respected. Establishing good communication with residents and providing adequate information in a form the resident can understand.
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Beneficence
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The concept that one ought to prevent and/or remove harm.
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Health care should be provided to residents in a manner that does minimal harm. Residents should be provided with information about risks and probability of interventions. The resident’s autonomy must be respected - what constitutes benefit for one may be considered harm to another.
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Non-maleficence
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The concept that one ought not to inflict harm.
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Justice
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People should be treated equally unless it has been shown that there is a significant difference between people, justifying different treatment.
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Fair distribution of health resources, including staffing. Respects for people’s rights. Respect for morally acceptable laws.
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Advance Care Planning
It is highly recommended that all RACF residents be assisted to complete an Advance Care Plan. An Advance Care Plan is a documented plan of care for the resident made in advance. The Advance Care Plan is used by the health care team if, in the future, a resident becomes unable to express his or her choices for treatment. By documenting preferences relating to level of care intervention and terminal care in advance, the resident provides direction for the health care team and family members making care decisions that uphold his or her wishes. Creating an Advance Care Plan has legal requirements. Implications are discussed in the Advance Care Planning Clinical Information Sheet.
Diagnosis of Dying
To ensure that the resident receives appropriate end-stage care and support, it is essential to diagnosis when the resident is dying. Although there is often a reluctance to diagnosis the final stages of dying as it can be viewed as ‘giving up hope’, it is important to recognise this stage and plan care that supports the resident in achieving end-of-life goals and a good death [2]. Figure One identifies the importance of identifying dying in order to meet the changing needs of the resident.
Figure One – Care Process on Diagnosis of Dying [2]
Signs and Symptoms of Dying
Although the course of death is not entirely predictable, the following signs and symptoms may be an indication that the resident is dying [2, 3, 5, 6]:
Loss of mobility and independence, e.g. becoming bed-bound; Rapid weight loss; Loss of appetite and/or thirst; Chronic, profound weakness; Difficulty swallowing; Dry mouth; Requiring frequent nursing interventions; Alterations to breathing pattern; Peripheral cyanosis and coldness; Semi-consciousness, with lapses into unconsciousness; and Daily irreversible physical deterioration.
Specifically, the following are indications that a resident with heart disease may be getting close to death [2]:
Increase in exacerbations with worsening signs and symptoms requiring acute management; No identifiable, reversible precipitator to an acute episode of heart failure; Already receiving maximum tolerable doses of medications; Decreasing renal function or renal failure; and No response within 2-3 days to diuretics or vasodilators during an acute exacerbation.
Developing a Management Plan
The Liverpool Care Pathway for the Dying Patient (LCP) included in the Reference Cards was developed in the UK as a tool to assist staff in RACFs (and other settings) to assess, plan and manage care for the resident throughout the final stage of life once it is established the resident is dying [7, 8]. This can be used by the GP, RACF staff and the health care team, together with the resident and his/her relatives, to develop a management plan.
The LCP tool includes three phases of care [7, 8]:
Initial Care Decisions
Once it has been established that the resident is entering the final stages of life, the following decisions and anticipatory planning are appropriate in most instances [5, 6, 8, 9]:
Cease unnecessary medications; Select the most appropriate route for administration of essential and/or symptom management medications – consider the subcutaneous route via a syringe driver if the resident can no longer take oral medication; Ensure that there is ready access to medications commonly used in end-of-life symptom management to avoid delay in initiating treatment should symptoms develop; Develop a care plan to meet the goals for a good death; Regularly assess and control physical symptoms; Incorporate psychological support and provision of information (for resident, carers and family) into care planning; Facilitate spiritual care according to the resident’s preferences; and Promote an environment that is pleasant for the resident.
Care planning
Care planning should address basic physical needs, symptoms that the resident is experiencing, anticipatory care for common symptoms experienced during dying, and psychological and spiritual needs [5, 6, 8, 9]. The LCP provides a framework for care planning, by identifying the care goals shown in Table Two as the focus of care planning for the final stage of life.
Table Two: Liverpool Care Pathway Care Goals [7, 8]
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Goals to meet in care planning and delivery
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Patient is pain free
Patient is not agitated
Excessive respiratory secretions are not a problem
Patient does not feel nauseous or vomits
Breathlessness is not distressing for patient
Mouth is moist and clean
In terms of continence issues, patient is comfortable
All medication is given safely & accurately
Patient is comfortable and in a safe environment
Patient is not agitated or distressed due to constipation or diarrhoea
Patient becomes aware of the situation as appropriate
Family / other are prepared for the patient’s imminent death with the aim of achieving peace of mind and acceptance
Appropriate religious/spiritual support has been given
The needs of those attending the patient are accommodated
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Symptom Assessment
The physical experience of the last stage of life is different for each person depending upon the specific diseases from which the person suffers and his or her general aging process. A study conducted in Australian RACFs found the most common physical problems were pain, personal cleanliness, dyspnoea, incontinence and fatigue [3]. Table Two outlines symptoms patients in a palliative care unit experienced in the end stage of life [1].
Table Three: Frequency of common end-of-life symptoms [1]
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Symptom
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percentage of palliative care patients experiencing symptom
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Fatigue
Pain
Dyspnoea (difficulty breathing)
Cough
Anorexia (loss of appetite)
Constipation
Nausea
Lymphoedema
Insomnia
Vomiting
Oral discomfort
Dysphagia (difficulty swallowing)
Ascites (excess abdominal fluid)
Diarrhoea
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52
50
32
24
20
18
11
11
10
7
6
6
6
3
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Objective assessment by the GP or RACF staff provides an indication of response to intervention strategies. However research in the palliative care setting has shown a poor correlation between assessment by the health care team and the resident’s self report of symptoms and their impact on quality of life [1]. Assessment tools designed for use in end-of-life care focus on the resident’s subjective assessment of their symptoms. Whilst most assessment tools have been validated with cancer patients, their wider use in assessing residents receiving end-life care is supported.
The following end-of-life symptom assessment tools for use in palliative care are included in the Reference Cards:
Liverpool Care Pathway for the Dying Patient: 3 stage care planning and resident assessment tool for use from diagnosis of dying through to after-death care. Memorial Symptom Assessment Scale: A validated assessment tool that measures the prevalence, severity, and distress of 23 end-of-life symptoms. Edmonton Symptom Assessment System: A validated assessment tool that measures the severity of 9 end-of-life symptoms and graphs resident daily progress. Palliative Care Visual Analog Scale: Visual analog scales have been validated as reliable means of assessing a variety of symptoms. This tool uses visual analog scales to assess ten common end-of-life symptoms.
In addition, assessment may be conducted using symptom-specific assessment tools. A variety of assessment tools are discussed throughout the disease-specific Clinical Information Sheets and these are generally appropriate for use in terminal care, for example:
Abbey Pain Scale: Pain assessment tool for use with residents with dementia or those who are unable to verbalise their pain. Modified Borg Dyspnoea Scale: A numeric scale that assesses severity of acute dyspnoea. Visual Analog Scale for assessing dyspnoea: A tool that is sensitive to changes in the resident’s experience of dyspnoea.
Management of Physical Symptoms
Pain
Use of narcotics frequently raises concerns for care staff regarding the hastening of death of the resident [3]. Evidence suggests use of opioids and benzodiazepines for symptom management does not hasten death in residents receiving palliative care [3, 6, 10-12]. Opioids and benzodiazepines are appropriate for managing pain and anxiety, and their use is also considered appropriate in end-stage management of diseases in which the side-effect of respiratory depression is generally avoided, for example in COPD [3, 6, 11, 13].
It is important to conduct and document pain assessment on a regular (at least daily) basis. Increasing doses of opioids and benzodiazepines are often required in terminal care as symptoms worsen and/or the resident develops tolerance to the medication [6, 10-12].
Pharmacological and non-pharmacological interventions to manage pain are discussed in detail in the Clinical Information Sheet on Pain Management.
Dyspnoea
Dyspnoea (difficulty breathing) and abnormal breathing patterns such as Cheyne-Stokes breathing are often experienced as death approaches [14, 15]. Cheyne-Stokes breathing is when the resident has periods of apnoea (no breathing) followed by periods of rapid breathing. The experience of dyspnoea can be frightening for both the resident and family, and can cause panic, which often increases the initial dyspnoea [3]. Rather than attempting to correct underlying causes of dyspnoea in end-stage care, priority is given to improving the patient’s subjective sensation and promoting comfort [3, 15]. Appropriate management of dyspnoea in end-stages includes [13, 15-18]:
Benzodiazepines: Reduce anxiety-related dyspnoea; Opioids: Decrease the resident’s sensation of dyspnoea; Parenteral diuretics: Where dyspnoea is related to fluid overload; Oxygen: When the resident is hypoxic; and Non-pharmacological strategies: Appropriate for all dyspnoea, with or without concurrent pharmacological management.
Non-pharmacological interventions to help alleviate dyspnoea include [3, 15-17]:
Posture and positioning to promote lung expansion; Relaxation techniques; Controlled breathing techniques; Acupuncture or acupressure; Having air flow across the face (e.g. fan, open window); Massage to relax shoulders and upper chest; Reducing the need for exertion by assisting with or reducing ADLs; and Emotional support.
Table 3 outlines medication options for dyspnoea in end stages of life, and the benefits they may provide for the resident.
Table Four: Pharmacological measures to manage dyspnoea [3, 15-17]
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Treatment
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Comments
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Potential positive effects
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Potential negative effects
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Oxygen
Funded for residents in high level care
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Continuously or during symptom exacerbation only if ordered by the GP
Has not been shown to improve most dyspnoea in end-stage care
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Reversal of hypoxia
Increased activity
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Must remain close to oxygen source
Persistent dry mouth
Impaired communication
Exacerbation of claustrophobia
Can be psychologically addictive
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Benzodiazepines
e.g. clonazepam, lorazepam, oxazepam
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Use least sedating medications and dosages
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Relief of anxiety related to dyspnoea
Manage panic attacks
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Decreased alertness that may interfere with end-of-life planning
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Opioids
e.g. morphine, oxycodone, buprenorphine
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Titrated according to resident response
Frequent bolus doses may be more effective than slow-release formulations or continuous infusions
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Lowering of ventilation needs
Increased activity
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Decreased alertness
Impaired communication
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Diuretics
Usually Frusemide
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If oral or intravenous administration is not possible consider subcutaneous route
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Decrease in pulmonary congestion
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Increase in toileting needs
Dehydration
Postural hypotension
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Nausea and Vomiting
Nausea and/or vomiting in the last days of life are not uncommon and reduce the resident’s quality of life. Determining the underlying cause of nausea or vomiting assists in selecting the most appropriate management, particularly choice of anti-emetic medication. Possible causes of nausea and vomiting include [3, 5]:
Medication side effects, e.g. opioids; Disease factors, e.g. malignancies of the gastrointestinal system, raised intracranial pressure; Effects of slowing of the gastrointestinal tract (GIT), e.g. poor gastric emptying, constipation; Hyperacidity / heartburn; Metabolic causes, e.g. hypercalcaemia, electrolyte imbalances; Environmental causes, e.g. unpleasant smells; and Psychological causes, e.g. anxiety.
Reversible causes of nausea and vomiting should be corrected, where this can be achieved without invasive therapy. Electrolyte imbalances and dehydration may worsen the experience of nausea; their management may bring relief [5].
Strategies to help alleviate discomfort related to nausea and vomiting include [5]:
Review the resident’s medications and cease those no longer necessary; Remove the source of smells the resident finds unpleasant (particularly food smells); Provide small, more frequent meals for residents who can tolerate food; Do not place pressure on the resident to eat or drink if he/she choses not to; Citrus-flavoured foods and drinks are more easily tolerated; Regular mouth care and general hygiene; Relaxation therapy, particularly where the cause of nausea/vomiting is stress-related; and Aromatherapy.
Table Four: Selection of medication to manage nausea and vomiting [3, 5, 18]
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Cause of symptoms
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Class of medication
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Medication
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Prescribing details
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Raised intracranial pressure
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Corticosteroid
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dexamethasone
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Commence with 16 mg orally then reduce the dose to the lowest dose that controls symptoms
Maintenance dose of 4-6 mg orally daily
Must reduce gradually if taken for over 3 weeks
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GIT stasis
Functional bowel obstruction
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Prokinetic
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metoclopramide
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10mg orally up to three times a day OR
10mg subcutaneously up to 3 times a day OR
40-60mg slow subcutaneous infusion over 24hrs
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Domperidone
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10-20mg orally every 4 to 8 hours OR
30-60mg rectally every 4 to 8 hours
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Gastro-oesophageal reflux
hyperacidity
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Nonabsorbable antacids
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magnesium and aluminium preparations e.g. mylanta
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10-20ml orally as required
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Histamine H2-receptor antagonist
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ranitidine
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300mg orally daily
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Proton pump inhibitor
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omeprazole
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20mg orally daily
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Opioid-induced
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haloperidol
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1.5mg orally at night OR
1-2-5mg subcutaneously daily
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metoclopramide
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10mg orally up to three times a day OR
10mg subcutaneously up to 3 times a day OR
40-60mg slow subcutaneous infusion over 24hrs
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Abdominal or pelvic tumours
Movement-related
Other drugs and metabolic causes
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Antihistimine
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cyclizine
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50mg orally every 8 hours OR
50mg subcutaneously up to 3 times/day
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Dopamine antagonist
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haloperidol
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1.5mg orally at night OR
1-2-5mg subcutaneously daily
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Cough
Normal coughing is a reflex that clears the airways to promote airflow, therefore coughing is usually only treated where it is distressing to the resident. There are a variety of causes of cough during the last stages of life, and in many instances there will be a number of factors contributing to the resident’s cough. Some of these may be [6, 19, 20]:
Related to dyspnoea (see Management of Dyspnoea); Excess respiratory tract secretions, e.g. saliva, mucous, blood; Dysphagia with or without accompanying aspiration, e.g. inhalation of foreign material into lungs; Airway obstruction related to chronic disease and/or malignancies; and Medication side effects, e.g. ACE inhibitors, beta-blockers.
During end-of-life care aggressive investigation and management of the causes of coughing, e.g. antibiotics, vigorous physiotherapy, chest X-ray, is generally inappropriate and management should focus on promoting the resident’s comfort [19, 20].
Strategies to reduce cough and promote the resident’s comfort [6, 19, 20]:
Review and cease unnecessary medications;
Position the resident on his or her side with upper body raised to assist secretion drainage from mouth; Steam or nebulised 0.9% saline inhalations for dry cough (shown to be as effective as menthol/eucalyptus inhalations); If the resident is able and willing to take them, fluids to increase hydration if oral secretions are thick; and Gentle suctioning to assist in clearing oral secretions
Pharmacological management of cough in the last days of life generally focuses on providing symptomatic relief through suppression of coughing. Although pholcodine linctus or codeine linctus may be effective in cough suppression it has been shown that for best effect doses required are significantly higher than the normal recommended dose [20]. An alternative effective medication is morphine, with the dose dependent upon the resident’s overall morphine regime, e.g. for pain management, dyspnoea [18-20].
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For residents not already taking opioids [19, 20]:
Morphine 2.5 mg regularly every 4 hours, and as required
For residents for whom codeine or pholcodine were ineffective [19, 20]:
Morphine 5-10 mg regularly every 4 hours, and as required
For residents already taking opioids [19, 20]:
Morphine as required at a dose equivalent to one sixth of the resident’s total daily dose of regular morphine
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Fatigue
Although fatigue can arise due to underlying reversible causes, in the final days of life it may simple be a result of disease progression. Fatigue – a feeling of tiredness, weakness and general lack of energy - is a common problem during the end stages of life, particularly when the resident has multiple diseases in advanced stages. The experience of fatigue impacts upon quality of life, as the resident no longer has the energy or ability to complete physical and/or psychological tasks [3]. No pharmacological interventions have been found to effectively reduce fatigue. Whilst cognitive behavioural therapy and acupressure have both been shown to have a positive effect, these therapies take weeks-months to achieve noticeable results [3].
Strategies that may reduce the resident’s experience of fatigue in the last days of life include:
Nutrition and Hydration
During the end stages of life it is not unusual for the resident to refuse food and/or fluids due to loss of appetite, a readiness to die, no longer finding meaning in living, or poor quality of life. The resident’s refusal of food and fluids may distress both family members and RACF staff, leading to inappropriate intervention [3, 21, 22]. Assessment for reversible causes of poor nutrition and appetite should be undertaken by the care team with the resident, and corrected with appropriate medical and/or nursing management. Treatable causes of poor nutrition include [3]:
Medication side effects; Emotional causes such as depression; Swallowing difficulties and/or oral considerations, e.g. ill-fitting dentures; Metabolic disorders, e.g. hyperthyroidism; Social causes, e.g. unappealing environment, concern over personal appearance of ability to feed self; Wandering and other behavioural or psychological symptoms experienced with advanced dementia; and Unappealing food, e.g. presentation, food selection, taste, cultural considerations.
If no reversible cause is found for poor nutrition, the general approach in end-of-life care is to avoid forcing the resident to consume unwanted food or fluids [1, 3, 6]. There is no strong evidence that supports the general use of nutritional supplements for elderly patients in the end stages of life, nor the placement of feeding tubes [3, 21-24], which is discussed further in the Gastrostomy Tube Management Clinical Information Sheet.
It is not uncommon for interest in fluids to also decline at the end stage of life however this may not lead to clinical dehydration, depending upon the timeframe. Studies have found that thirst and experience of dry mouth are poor indicators of overall hydration status and are unlikely to be alleviated by artificial re-hydration strategies in end-stage care [3]. The use of artificial re-hydration (see Subcutaneous Hydration Clinical Information Sheet) should be considered on a case-by-case basis by the resident, his or her family and the health care team. Some points to consider include [3]:
Re-hydration has not been found to increase comfort levels; Evidence suggests re-hydration may have a deleterious effect on cognitive function; and Re-hydration may have negative social and/or psychological effects
Strategies to promote resident comfort with respect to nutrition and hydration include [1, 3, 6, 18]:
Provide small, more frequent meals however if the resident expresses a lack of interest in eating, remove food; Provide food in a form that the resident can consume, e.g. chopped, blended; When assisting residents with feeding be seated at eye-level with the resident and create a relaxing environment; Provide verbal prompts to encourage the resident to drink; Provide snacks and fluids to the resident’s personal preferences; Regular presentation of fluids; Provide ice chips for sucking or water for sipping to decrease sensation of thirst (where present); and
Ensure that mouth care is maintained on a regular basis.
Psychological Support
Psychological state during the last stage of life varies significantly between individuals depending upon the circumstances leading to their death, the extent to which they accept the impending outcome, personality, religious and cultural factors, and level of support [1].
Anxiety and Depression
Anxiety and depression are not uncommon in the last days of life. Anxiety – the feeling of fear and danger – can induce or enhance physical symptoms of dyspnoea, palpitations and nausea/vomiting. Both anxiety and depression can disrupt the resident’s thought patterns and interfere with problem-solving, coping and ability to reach closure in life events [3].
Anxiolytics/benzodiazepines may be used to manage anxiety, distress and fear of dying. The least sedating medications are recommended to allow the resident to complete his or her end of life planning [11]. The following regime is recommended as appropriate in managing endstage anxiety:
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Alprazolam 0.125mg orally twice daily
OR
Clonazepam 0.25mg orally twice daily [11]
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Antidepressant medication, e.g. selective serotonin re-uptake inhibitors, take 6-8 weeks to achieve a positive effect and are therefore inappropriate in the management of end-stage depression [3, 18]. Non-pharmacological interventions and management of pain and other distressing symptoms is most appropriate.
Strategies to help manage anxiety and depression include [3, 25]:
Create an open, supportive environment; Provide information in a format the resident and family can understand; Provide the resident with opportunities to verbalise their feelings and reminisce; Provide a reassuring presence even when the resident does not wish to engage in talk; Hand massage and therapeutic touch; Encourage the resident’s family to be involved in care and to use the above strategies in their Interaction with the resident; and Referral to a counsellor may be appropriate.
Spiritual Support
Residents who have a spiritual belief system may require support to access religious services or simply acknowledgement from staff of this important facet of their life. Practical spiritual support should be provided to residents by the RACF staff, regardless of the staff member’s specific belief system [3]. Spiritual beliefs, including any religious end-of-life requirements are usually assessed on admission to the RACF and the resident’s wishes documented clearly in their history and/or Advance Care Plan. The Spiritual Involvement and Beliefs Scale included in the Reference Cards may be administered at any time during the resident’s stay in the facility.
Strategies to support spirituality in the end-stages of life include [3, 25]:
Sitting with the resident and providing a supportive presence; Avoid being judgemental of the resident’s beliefs; Liaise with local religious support services, e.g. chaplain, pastoral care worker, if requested by the resident and his/her family. Often representatives from the resident’s own religious community will be available to provide support for the resident, so enquire about these affiliations first; Assist in making spiritual items available for the resident, e.g. prayer book, rosary beads, music; Maintain a respect for the resident’s privacy during spiritual activities; and Use active listening skills an affirmation of the resident’s stated beliefs.
Care After Death
Every RACF has policies regarding responsibilities after a resident dies. Policies should clearly outline who is responsible for determining the resident has died (whether this can be performed by the person in charge or whether a GP should be contacted), who will complete the Certificate of Death (this is usually the resident’s regular GP), who to inform (it is helpful to state in resident records if relatives wish to be informed at any time of the day/night) and conditions under which the coroner should be contacted [6]. Most RACFs have clear policies regarding contact of the facility manager, who also has the additional duties of preparing for a new admission. The LCP tool included in the Reference Cards provides a comprehensive documentation tool for after death care.
Signs of Death
Signs that the resident has died include [3]:
Absence of pulse and breathing; Pupils become fixed and dilated and the eyes usually remain open; The body becomes pale and gradually cools; Initially the muscles and sphincters relax, meaning that the resident may be incontinent; The jaw generally falls open; Immediately after death internal moving of fluids may be heard and can be mistaken for a heart beat; and Rigor mortis (stiffening of the body) takes hours to develop.
Responsibilities following death
After the resident has died, immediate responsibilities of staff may include [3, 6]:
Notify the resident’s medical practitioner/s; Notify the resident’s next-of-kin/relatives if they are not present; Notify the resident’s chosen funeral director or advising the resident’s family to select a funeral director; Uphold the resident’s spiritual and cultural beliefs – if the resident has specific post-death requirements these should be clearly documented in the resident’s history and followed; Wash the resident’s body (unless the coroner is involved) in preparation for collection by the funeral director; Ensure the resident’s possessions are safely stored or given to the relatives; Inform other care staff and residents within the facility; and Provide the family with immediate bereavement support.
Sources of Information
Where to go for more information
Palliative Care Victoria
Palliative Care Victoria provide support, advice and opportunities to collaborate with other professional and non-professional carers of people with terminal illness. The website provides a range of educational material for professionals and patients.
Website:http://www.latrobe.edu.au/pallcarevic/index.html
Contact: Mon-Fri 9am-5pm for all enquiries: 1800 654 301 (within Australia)
Suite 3C, 182 Victoria St,
East Melbourne VIC 3002
Australia
The Liverpool Care Pathway website
Promoting best practice for care of the dying – The Liverpool Care Pathway website provides information for professionals on the developing care pathways for residents following diagnosis of dying. The website, and full use of the LCP tool, focuses on ongoing quality assessment of policies and procedures within the RACF relating to management of dying.
Website:http://www.lcp-mariecurie.org.uk
References
Lo, R.,Woo, J.Palliative Care in the Elderly. Journal of the Hong Kong Geriatrics Society, 2000. 10: p. 16-24. Ellershaw, J.,Ward, C., Care of the dying patient: the last hours or days of life. BMJ, 2003. 326(4): p. 30-35. Australian Palliative Residential Aged Care project team (APRAC), Guidelines for a Palliative Approach in Residential Aged Care. 2006, Australian Government and National Health and Medical Research Council: Canberra. p. 275. Kennedy, C., Module Four: Medical Administration Demystified: Ethical Issues, in Support Scheme for Rural Specialists, The Royal Australasian College of Medical Administrators, (RACMA), Editor. 2004, The Royal Australasian College of Medical Administrators: Canberra. PRODIGY Knowledge, (PK), in Palliative care - nausea/vomiting/malignant bowel obstruction
n (accessed September 2006), (SCHIN)., Sowerby Centre for Health Informatics at Newcastle Ltd. 2006 eTG, Therapeutic Guidelines: Terminal Care, in http://www.tg.com.au (accessed August 2006), eTG. 2006 National Council for Palliative Care, (NCPS), Introductory guide to end of life care in care homes. 2006, National Health Service Department of Health (NHS): London. p. 17. Marie Curie Cancer Care, (MCCC). Liverpool Care Pathway: Guidelines for use of the LCP - professional. 2006 Thomas, K., C7 minimum protocol adapted from LCP - Gold Standards Framework. 2005, Department of Health England: London. p. 1. Chan, J., Treece, P., Engelberg, P., Rubenfeld, K. , Crowley, L., Rubenfeld, G., Steinberg, K., Curtis, J., Narcotic and Benzodiazepine Use After Withdrawal of Life Support: Association With Time to Death? Chest, 2004. 126: p. 286-293. eTG, Therapeutic Guidelines: COPD, in http://www.tg.com.au (accessed April 2006), eTG. 2006 eTG, Therapeutic Guidelines: Cardiac Failure, in http://www.tg.com.au (accessed August 2006), eTG. 2006 Australian Lung Foundation, (ALF),Thoracic Society of Australia and New Zealand, (TSANZ), The COPD-X Plan: Australian and New Zealand Guidelines for the management of Chronic Obstructive Pulmonary Disease 2006. 2006, Australian Lung Foundation, (ALF). p. 66. Hunt, S., Antman, E., Smith, S., Abraham, W., Chin, M., Feldman, W., Francis, G., Ganiats, T., Jessup, M., Konstam, M., ACC/AHA 2005 Guideline Update for the Diagnosis and Management of Chronic Heart Failure in the Adult. 2005, American College of Cardiology, (ACC); American Heart Association, (AHA); American College of Chest Physicians, (ACCP); International Society for Heart and Lung Transplantation, (ASHLT). Cardiac Society of Australia and New Zealand, (CSANZ),Heart Foundation of Australia , (HFA), Guidelines on the Contemporary Management of the Patient with Chronic Heart Failure in Australia. 2002, The Cardiac Society of Australia and New Zealand, (CSANZ) and Heart Foundation of Australia , (HFA). Lorenz, K., Lynn, J., Morton, S., Dy, S., Mularski, R., Shugarman, L., Sun, V., Wilkinson, A., Maglione, M, ., Shekelle, P., Evidence Report/Technology Assessment No. 110 End-of-Life Care and Outcomes. 2004, Agency for Healthcare Research and Quality, (AHRQ): Southern California. p. 6. PRODIGY Knowledge, (PK), Palliative care - dsypnoea, in http://www.prodigy.nhs.uk/palliative_care_dyspnoea (accessed September 2006), (SCHIN)., Sowerby Centre for Health Informatics at Newcastle Ltd. 2006 Pinderhughes, S.,Morrison, R., Chapter 18 - Palliative Care, in Geriatrics Review Syllabus: A Core Curriculum in Geriatric Medicine, Sixth Edition (GRS6), Pompei, P and al, et, Editors. 2006, American Geriatric Society, (AGS). Davis, C., ABC of palliative care: Breathlessness, cough, and other respiratory problems. BMJ, 1997. 315: p. 931-934. PRODIGY Knowledge, (PK), Palliative care - cough, in http://www.prodigy.nhs.uk/palliative_care_cough (accessed September 2006), (SCHIN)., Sowerby Centre for Health Informatics at Newcastle Ltd. 2006 Li, I, Feeding tubes in patients with severe dementia. American Family Physician, 2002. April. Finucane, T, Christmas, C, Travis, K, Tube feeding in patients with advanced dementia: a review of the evidence. JAMA, 1999. 282(14): p. 1365-1370. Dollard, K,Young, G, PEG Care and Support Service. 1999, Adelaide: Flinders Medical Centre. Hong Kong Geriatrics Society, Clinical Guidelines on Enteral Tube Feeding. Amended ed. 2003, Hong Kong: Hong Kong Geriatrics Society. Gaskamp, C., Sutter, R., Meraviglia, M., Promoting spirituality in the older adult. 2004, University of Iowa Gerontological Nursing Interventions Research Center, Research Dissemination Core: Iowa City (IA). p. 50. National Health And Medical Research Council, (NHMRC), Guidelines for the development and implementation of clinical practice guidelines. 1995, Canberra: AGPS.
Levels of Evidence
Background information on end-of-life care provided in this Clinical Information Sheet (CIS) is based on evidence produced by expert opinions in the field, particularly the Australian Palliative Residential Aged Care project team who have produced recent national guidelines on palliative care in RACFs.
The following table outlines the level of evidence of each reference:
|
|
Reference |
Year |
Level of Evidence |
|
1. |
Lo, R.,Woo, J.Palliative Care in the Elderly. Journal of the Hong Kong Geriatrics Society, 2000. 10: p. 16-24. |
2000 |
Level IV C evidence |
|
2. |
Ellershaw, J.,Ward, C., Care of the dying patient: the last hours or days of life. BMJ, 2003. 326(4): p. 30-35. |
2003 |
Level IV C evidence |
|
3. |
Australian Palliative Residential Aged Care project team (APRAC), Guidelines for a Palliative Approach in Residential Aged Care. 2006, Australian Government and National Health and Medical Research Council: Canberra. p. 275. |
2006 |
Level 1 evidence |
|
4. |
Kennedy, C., Module Four: Medical Administration Demystified: Ethical Issues, in Support Scheme for Rural Specialists, The Royal Australasian College of Medical Administrators, (RACMA), Editor. 2004, The Royal Australasian College of Medical Administrators: Canberra. |
2004 |
Level IV C evidence |
|
5. |
PRODIGY Knowledge, (PK), in Palliative care - nausea/vomiting/malignant bowel obstruction
n (accessed September 2006), (SCHIN)., Sowerby Centre for Health Informatics at Newcastle Ltd. 2006 |
2006 |
Level IV C evidence |
|
6. |
eTG, Therapeutic Guidelines: Terminal Care, in http://www.tg.com.au (accessed August 2006), eTG. 2006 |
2006 |
Level IV C evidence |
|
7. |
National Council for Palliative Care, (NCPS), Introductory guide to end of life care in care homes. 2006, National Health Service Department of Health (NHS): London. p. 17. |
2006 |
Level IV C evidence |
|
8. |
Marie Curie Cancer Care, (MCCC). Liverpool Care Pathway: Guidelines for use of the LCP - professional. 2006 |
2006 |
Level IV C evidence |
|
9. |
Thomas, K., C7 minimum protocol adapted from LCP - Gold Standards Framework. 2005, Department of Health England: London. p. 1. |
2005 |
Level IV C evidence |
|
10. |
Chan, J., Treece, P., Engelberg, P., Rubenfeld, K. , Crowley, L., Rubenfeld, G., Steinberg, K., Curtis, J., Narcotic and Benzodiazepine Use After Withdrawal of Life Support: Association With Time to Death? Chest, 2004. 126: p. 286-293. |
2004 |
Level IV A evidence |
|
11. |
eTG, Therapeutic Guidelines: COPD, in http://www.tg.com.au (accessed April 2006), eTG. 2006 |
2006 |
Level IV C evidence |
|
12. |
eTG, Therapeutic Guidelines: Cardiac Failure, in http://www.tg.com.au (accessed August 2006), eTG. 2006 |
2006 |
Level IV C evidence |
|
13. |
Australian Lung Foundation, (ALF),Thoracic Society of Australia and New Zealand, (TSANZ), The COPD-X Plan: Australian and New Zealand Guidelines for the management of Chronic Obstructive Pulmonary Disease 2006. 2006, Australian Lung Foundation, (ALF). p. 66. |
2006 |
Level I evidence |
|
14. |
Hunt, S., Antman, E., Smith, S., Abraham, W., Chin, M., Feldman, W., Francis, G., Ganiats, T., Jessup, M., Konstam, M., ACC/AHA 2005 Guideline Update for the Diagnosis and Management of Chronic Heart Failure in the Adult. 2005, American College of Cardiology, (ACC); American Heart Association, (AHA); American College of Chest Physicians, (ACCP); International Society for Heart and Lung Transplantation, (ASHLT). |
2005 |
Level I evidence |
|
15. |
Cardiac Society of Australia and New Zealand, (CSANZ),Heart Foundation of Australia , (HFA), Guidelines on the Contemporary Management of the Patient with Chronic Heart Failure in Australia. 2002, The Cardiac Society of Australia and New Zealand, (CSANZ) and Heart Foundation of Australia , (HFA). |
2002 |
Level I evidence |
|
16. |
Lorenz, K., Lynn, J., Morton, S., Dy, S., Mularski, R., Shugarman, L., Sun, V., Wilkinson, A., Maglione, M, ., Shekelle, P., Evidence Report/Technology Assessment No. 110 End-of-Life Care and Outcomes. 2004, Agency for Healthcare Research and Quality, (AHRQ): Southern California. p. 6. |
2004 |
Level I evidence |
|
17. |
PRODIGY Knowledge, (PK), Palliative care - dsypnoea, in http://www.prodigy.nhs.uk/palliative_care_dyspnoea (accessed September 2006), (SCHIN)., Sowerby Centre for Health Informatics at Newcastle Ltd. 2006 |
2006 |
Level IV C evidence |
|
18. |
Pinderhughes, S.,Morrison, R., Chapter 18 - Palliative Care, in Geriatrics Review Syllabus: A Core Curriculum in Geriatric Medicine, Sixth Edition (GRS6), Pompei, P and al, et, Editors. 2006, American Geriatric Society, (AGS). |
2006 |
Level IV C evidence |
|
19. |
Davis, C., ABC of palliative care: Breathlessness, cough, and other respiratory problems. BMJ, 1997. 315: p. 931-934. |
1997 |
Level IV C evidence |
|
20. |
PRODIGY Knowledge, (PK), Palliative care - cough, in http://www.prodigy.nhs.uk/palliative_care_cough (accessed September 2006), (SCHIN)., Sowerby Centre for Health Informatics at Newcastle Ltd. 2006 |
2006 |
Level IV C evidence |
|
21. |
Li, I, Feeding tubes in patients with severe dementia. American Family Physician, 2002. April. |
2002 |
Level IV C evidence |
|
22. |
Finucane, T, Christmas, C, Travis, K, Tube feeding in patients with advanced dementia: a review of the evidence. JAMA, 1999. 282(14): p. 1365-1370. |
1999 |
Level I evidence |
|
23. |
Dollard, K,Young, G, PEG Care and Support Service. 1999, Adelaide: Flinders Medical Centre. |
1999 |
Level IV C evidence |
|
24. |
Hong Kong Geriatrics Society, Clinical Guidelines on Enteral Tube Feeding. Amended ed. 2003, Hong Kong: Hong Kong Geriatrics Society. |
2003 |
Level IV C evidence |
|
25. |
Gaskamp, C., Sutter, R., Meraviglia, M., Promoting spirituality in the older adult. 2004, University of Iowa Gerontological Nursing Interventions Research Center, Research Dissemination Core: Iowa City (IA). p. 50. |
2004 |
Level I evidence |
Literature was identified through a standardised search for systematic reviews and clinical guidelines published by relevant health organisations; and ‘clinical guidelines’ and ‘practice guidelines’ in CINAHL & MEDLINE databases and HONcode search engine. Literature was evaluated according to relevance to residential aged care patients, and strength of evidence using the NHMRC (1995) [26] scale for randomised control data and lower levels of evidence when RCT is not available. The scale was adapted by adding a level of evidence (Level V) for non-referenced material, e.g. developed in local RACFs. Prescribing information is consistent with the Australian Therapeutic Guidelines, at the time of writing.
Applicability of information
This Clinical Information Sheet has been developed with consideration to legislation and any requirements of or recommendations from professional registration groups or regulating bodies (e.g. NBV, RCNA, ANF) overseeing the residential aged care industry in Victoria, Australia. Readers outside Victoria, Australia are advised to review the material in the context of their local legislation and health system regulations.
This Clinical Information Sheet was developed using the process outlined in Section 5, and is provided under the terms of the disclaimer in Section 1 of the GP and Residential Aged Care Kit.
GP and Residential Aged Care Kit: http://nwmdgp.org.au/pages/after_hours/
For more detailed or up to date information than is provided in this CIS, please refer to cited sources and current literature.
Reference Cards for End of Life Care
The following reference cards are designed to be used in conjunction with the End of Life Care Clinical Information Sheet. Because the evidence base and availability of national guidelines for clinical care and multidisciplinary service delivery is rapidly changing, we strongly recommend that the these Reference Cards be regularly reviewed and revised as with Clinical Information Sheets.
Viewing Reference Cards
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Printing Reference Cards
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Downloading Reference Cards
To download the reference cards, click on the link and select save to disk. You will be asked to select a folder in which to save the reference card. To download all the reference cards together, use the link under Downloads and Printing.
Reference Cards:
Liverpool Care Pathway for the Dying Patient
Memorial Symptom Assessment Scale
Edmonton Symptom Assessment System
Palliative Care Visual Analog Scale
Spiritual Involvement and Beliefs Scale
Downloads and Printing
See note on viewing and printing documents.
To download the Clinical Information Sheet and/or the entire Reference Card package for this CIS, use the buttons below. To download, click on the link and select save to disk. You will be asked to select a folder in which to save the document. To download individual Reference Cards use the links above. Downloads are in printable formats.
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