The IAHPC Manual of Palliative Care
2nd Edition
V. Psychosocial
CONTENTS
PSYCHOLOGICAL DISTRESS
DEPRESSION
ANXIETY
SPIRITUAL AND EXISTENTIAL DISTRESS
CARING FOR FAMILIES AND FRIENDS
PSYCHOLOGICAL DISTRESS
Some psychological distress will occur with any terminal illness
Factors predisposing to psychological distress
- disease
- rapidly progressive
- present, anticipated disabilities, disfigurement
- physical dependence
- long illness: psychological exhaustion
- patient
- not fully understanding the disease, treatment or what lies ahead
- fear of pain, dying, disfigurement
- loss (or fear of loss) of control, independence, dignity
- helplessness, hopelessness
- insight regarding (or fear of) poor prognosis
- anxious personality, pre-existing personality traits
- pain
- symptoms
- social
- loss (or fear of loss) of job, social position, family role
- feels isolated (actual or perceived)
- feels a burden on family and carers
- unfinished business : personal, interpersonal, financial
- financial hardship
- fears for family
- cultural
- cultural differences in attitude to sickness, suffering, loss, and death
- language barriers
- spiritual
- religious issues
- spiritual issues, e.g. remorse, guilt, unfulfilled expectations, meaninglessness
- treatment
- diagnostic delays, multiple failed treatments
- side effects of therapy
- team
- poor communication
- lack of continuity of care
- exclusion of family, carers
Clinical features
- psychological distress is often described in terms of anxiety or depression but patients suffer a range of other emotional problems
- these do not necessarily or commonly reflect psychopathology and some, like denial, are best regarded as the clinical manifestations of coping mechanisms
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Examples of psychological distress |
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anxiety |
denial |
sadness, misery, remorse |
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depression |
guilt |
withdrawal, apathy |
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anger, frustration, irritability |
fear |
inappropriate compensation (joyful) |
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hopelessness, despair |
grief |
lack of co-operation with carers |
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helplessness |
passivity |
unresponsive pain |
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regression |
avoidance |
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Denial
- is the most frequently seen coping mechanism
- is not necessarily abnormal or pathological
- allows patients time to come to terms with their situation
- an alternative description is 'suppression of information' which emphasizes its protective function
- should not prompt team members to force information on the patient, but alert them to a defence mechanism
The level of psychological distress depends on patients' ability to cope
Factors predictive of poor coping include
- personal
- anxious or pessimistic personality
- poor coping with previous illnesses, stresses, losses
- adverse experiences with cancer in relatives or friends
- history of recent personal losses
- low personal esteem
- multiple family problems, obligations
- marital problems
- history of psychiatric illness
- personality disorder
- history of alcohol or substance abuse
- social
- few social supports, resources; isolated
- lower socioeconomic class
- sense of not being valued or understood
- certain cultural traditions
- not religious; no alternate value system
Treatment
- treat underlying causative factors, where possible
- general measures
- caring, considerate, unhurried, non-judgemental approach
- good listening, good communication
- reassurance about continuing care
- respect for the person and individuality
- allow discussion of fears regarding future suffering, life expectancy
- control pain and physical symptoms
- social
- address social issues, encourage social supports
- provide support for family and carers
- cultural
- respect cultural differences
- spiritual
- address religious or spiritual concerns
- other measures
- general supportive counselling
- support groups
- relaxation therapy
- meditation
- distraction
- socialization
- psychological therapies
- stress management techniques
- coping skills training
- cognitive therapy
- anxiolytics, antidepressants
- supportive psychotherapy
Effective treatment of psychological distress in patients with advanced cancer may greatly improve the quality of life
A truism of palliative care is that ‘nothing is trivial’. Everything the patient says, everything they experience is worthy of our attention, trivial as it may at first
appear. Time spent listening is never wasted.
DEPRESSION
Significant symptoms of depression are reported to occur
- in about 25% of patients with advanced cancer
- the incidence is probably higher in patients with advancing disease, increasing physical disability, or troublesome pain
In palliative care
- many patients with depression are not diagnosed or treated appropriately
- some are started on antidepressants during the last few weeks of life when there is insufficient time for the medication to have any therapeutic effect
Diagnostic criteria
The American Psychiatric Association’s DSM-IV criteria for diagnosis of depression in physically healthy individuals requires
- at least one of two core symptoms—depressed mood and anhedonia (decreased interest or pleasure)
- at least four other symptoms from the list
- each symptom needs to be
- severe (most of the day, nearly every day)
- durable (more than two weeks)
- be judged to cause clinically significant distress or impairment
- not be attributable to the patient’s medical condition or therapy.
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DSM-IV criteria for major depressive episode |
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Depressed mood |
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Anhedonia |
markedly diminished interest or pleasure in activities |
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Weight change |
unintentional weight gain or loss (>5% body weight in a month) |
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Sleep disturbance |
insomnia or hypersomnia |
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Psychomotor problems |
agitation or retardation |
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Lack of energy |
fatigue or loss of energy |
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Excessive guilt |
feelings of worthlessness or inappropriate guilt |
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Poor concentration |
diminished ability to think or concentrate, indecisiveness |
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Suicidal ideation |
recurrent thoughts of death or suicide, or suicide attempt |
In palliative care
- the significance of somatic symptoms is questionable as all may be attributable to the disease or treatment
- they might be considered significant if clearly out of proportion to the physical illness
- other criteria that have been advocated as indicators of depression in the terminally ill
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Indicators of depression in terminally ill patients |
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Psychological symptoms |
Other indicators |
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Dysphoria |
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Intractable pain or other symptoms |
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Depressed mood |
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Excessive somatic preoccupation |
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Sadness |
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Disproportionate disability |
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Tearfulness |
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Poor cooperation or refusal of treatment |
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Lack of pleasure |
History related indicators |
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Hopelessness |
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History of depression |
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Helplessness |
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History of alcoholism or substance abuse |
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Worthlessness |
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Pancreatic cancer |
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Social withdrawal |
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Guilt |
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Suicidal ideation |
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Reproduced with permission from Block SD for the ACP-ASIM End-of-Life Care Consensus panel: Assessing and Managing Depression in the Terminally Ill Patient. Annals of
Internal Medicine 2000; 132: 209-218. |
Clinical spectrum
- normal depressive symptoms
- symptoms of depression and anxiety that occur as part of a normal psychological stress response at times of crisis
- last one to two weeks
- resolve spontaneously with time and appropriate supportive care
- adjustment disorder with depressed mood (reactive depression)
- differs from the normal stress response in either degree or duration
- the response
- is maladaptive
- is greater than would be expected as a normal reaction
- lasts longer than expected (more than two weeks)
- may be more severe or intense, causing more disruption and interference with daily functioning, social activities, and relationships with others
- major depressive disorder
- symptoms are usually more severe
- the mood is incongruent with the disease outlook
- does not respond to support, understanding, caring or distraction
- correlates with a desire for death in the palliative care population
- organic brain syndromes
- patients with acute confusion (delirium) or early dementia may exhibit features of depression
- mental state examination will reveal evidence of organic brain dysfunction
- delusional thoughts and hallucinations, features of psychotic depression, may occur
Assessment
- the structured clinical interview is the gold standard for the diagnosis of depression
- the use of a single question "Are you depressed?" correctly identified the eventual diagnostic outcome in 197 palliative care
patients
Treatment
- diagnose and treat organic brain syndrome, if present
- exclude adverse effects of drugs and drug interactions
- treat any causative or aggravating factors
- pain, other physical symptoms, social, cultural, spiritual
- general support
- caring and empathy
- reassurance of continued care and interest
- provision of any information about the illness requested by the patient
- explore patients' understanding and fears about illness, prognosis
- encourage, strengthen family and social supports
- brief, supportive psychotherapy
- resolution of issues regarding disease, treatment, future, coping, etc.
- family, group therapy
- behavioural techniques
- antidepressants
- other drugs: hypnotics, anxiolytics, neuroleptics
| Antidepressants classified by principal actions |
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SNRIs – serotonin and noradrenaline re-uptake inhibitors |
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TCAs: amitriptyline, imipramine, dothiepin |
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venlafaxine |
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SSRIs – selective serotonin re-uptake inhibitors |
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fluoxetine, paroxetine, sertraline, citalopram |
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NRIs - noradrenaline re-uptake inhibitors |
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TCAs: desipramine, nortriptyline |
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reboxetine |
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NaSSA – noradrenergic and specific serotoninergic antidepressant |
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mirtazapine |
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Serotonin 5HT2 receptor antagonists |
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nefazodone |
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mianserin |
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Mono-amine oxidase inhibitors |
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Non-selective MAOIs: isocarboxazide, phenelzine |
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RIMAs – reversible inhibitor of mono-amine oxidase-A: moclobemide |
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Psychostimulant |
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methylphenidate |
Tricyclic antidepressants (TCAs)
- antidepressant medication is considered for any patient with significant depression
- adverse effects are common and can be clinically troublesome in elderly or frail patients
- different TCAs are more suited to certain situations
- patients with agitation or insomnia are treated with a sedating drug such as amitriptyline or doxepin
- patients with psychomotor slowing require a less sedating drug such as desipramine
- patients with problems related to intestinal motility or urinary retention need a drug with less anticholinergic effect such as desipramine or nortriptyline
- TCAs are usually started at a dose of 25-50 mg at night and increased gradually over several weeks
- 2 to 4 weeks is required for clinical response
- adults without physical illness require doses of 150-300 mg/d
- elderly or debilitated patients may only be able to tolerate much lower doses
- a systematic review of RCTs of TCAs given at low dose (<100mg/d) showed
- these drugs are effective at lower doses when compared to placebo
- that increasing to standard doses did not improve the response rate but did produce more adverse effects
Selective serotonin re-uptake inhibitors (SSRIs)
- have little sedative, anticholinergic or cardiac side effects
- can cause transient anxiety, insomnia, nausea and diarrhoea for the first few weeks
- sertraline is possibly the best drug for patients with physical illness
- paroxetine is more likely to cause drug interactions
- fluoxetine has a slow onset of action
- a Cochrane review of antidepressants in patients with medical illness showed that TCAs might be more effective than SSRIs but were associated with more adverse
effects
Mono-amine oxidase inhibitors (MAOIs)
- non-selective MAOIs should not be used in palliative care because of the need for dietary restrictions and the frequency of interactions with other drugs
- less drug interactions occur with the reversible inhibitor of mono-amine oxidase-A, moclobemide, but there is little to recommend its use in palliative care.
Noradrenergic and specific serotoninergic antidepressant (NaSSA)
- mirtazapine was effective in a small trial of patients with advanced cancer
- acts more quickly than traditional TCAs
- adverse effects are sedation, dry mouth and weight gain.
Serotonin and noradrenaline re-uptake inhibitors (SNRIs)
- venlafaxine does not have the sedative, anticholinergic or cardiac effects of amitriptyline and acts more quickly
- adverse effects are dizziness, dry mouth, nausea and insomnia
Psychostimulants
- methylphenidate has been used for patients with advanced disease and a life expectancy of weeks to a few months
- it is effective in the majority of patients
- serious adverse effects are uncommon
- should be given earlier in the day (5mg PO at 0800 and 1200h) to avoid insomnia
- effect is often seen within two to three days
- it has the beneficial side effects
- counteracting opioid-related sedation
- improving appetite
- improving cognitive function
- counteracting the feelings of weakness and fatigue
- promoting a sense of general well being
St John’s wort
- is extract of Hypericum perforatum
- is a popular over-the-counter antidepressant
- some studies report activity equivalent to other antidepressants with fewer adverse effects
- there are three RCTs that report it to be no better than placebo
ANXIETY
- anxiety is a normal and universal emotion
- occurs frequently in patients with physical disease
- includes a continuous clinical spectrum ranging from normal to psychiatric
Abnormal (maladaptive) anxiety is distinguished from normal anxiety by
- anxiety out of proportion to the stress
- persistence of symptoms for more than two weeks
- severe physical symptoms or recurrent panic attacks
- disruption to normal functioning
Clinical spectrum
- normal anxiety
- in response to the stress and crises associated with disease
- more frequent in the terminal phases of the disease
- adjustment disorder with anxious mood (reactive anxiety)
- lasts longer than expected (more than 2 weeks)
- exceeds the level that is regarded as normal and adaptive
- follows a defined incident or stress
- depressive symptoms frequently coexist
- generalized anxiety disorder
- characterized by chronic unrealistic worries with autonomic hyperactivity, apprehension and hypervigilance
- the anxiety is more pervasive and persistent, occurring in many different situations
- patients have more severe and disabling symptoms, which appear inappropriate or out of proportion to the medical situation
- panic disorder
- repeated sudden, unpredictable attacks of intense fear and physical discomfort
- attacks follow a crescendo pattern, reaching a maximum in a few minutes
- may occur in many different situations.
- phobic anxiety
- anxiety provoked by exposure to a specific feared object or situation
- usually results in an avoidance response.
- organic anxiety syndromes
- uncontrolled pain
- hypoxia, respiratory distress
- hypoglycaemia
- any uncontrolled or severe physical symptoms
- acute confusional state or delirium
- drug adverse effects: corticosteroids, metoclopramide, bronchodilators
- drug withdrawal: opioids, barbiturates, benzodiazepines, alcohol, nicotine
Treatment
- treat the cause of organic anxiety syndrome, if present
- exclude adverse effects of drugs and drug interactions
- treat other factors that may cause or aggravate anxiety
- pain, other physical symptoms, social, cultural, spiritual
- treat depression, if present
- general support (see Depression)
- brief, supportive psychotherapy (see Depression)
- psychological behavioural therapies
- relaxation training, hypnosis, cognitive-behavioural therapy, biofeedback
- distraction therapies
- music therapy, art therapy, socialization
- drug therapy: anxiolytics, hypnotics, antidepressants, neuroleptics
SPIRITUAL AND EXISTENTIAL DISTRESS
What is Spirituality?
- every human being, religious or not, possesses spirituality
- spirituality encompasses the purpose and meaning of an individual's existence
- it involves relationships with, and perceptions of, people and all other things and events
- it is unique to each person
- it is founded in cultural, religious and family traditions, and is modified by life experiences
- it is the basis for an individual's attitudes, values, beliefs, and actions
- for people with religious faith, spirituality is usually encompassed within their religion
What is spiritual or existential distress?
- questions pertaining to spiritual and existential issues may arise as the result of any life event, but occur most frequently (probably invariably) in response to terminal
illness
- spiritual and existential problems are an important source of clinical suffering
- they may cause or aggravate pain and psychosocial problems
- they can cause an anguish all their own
- recognition and successful management of spiritual and existential problems is an important part of palliative care
Spiritual and existential problems encountered by the terminally ill can be broadly grouped
- value and meaning of a person's life
- worth of relationships
- value of previous achievements
- painful memories or shame
- guilt about failures, unfulfilled aspirations
- relating to the present
- disruption of personal integrity
- physical, psychological and social changes
- increased dependency
- meaning of a person's life
- meaning of suffering
- relating to the future
- impending separation
- hopelessness
- meaninglessness
- concerns about death
- relating to religion
- strength of their faith
- whether they have live according to, and not disgraced, their faith
- existence of after-life
How is spiritual or existential distress manifest?
- it is most often manifest as physical or psychological problems
- pain or other symptoms unresponsive to appropriate therapy should alert the clinician to the possibility of unrecognised spiritual or existential problems
- the patient may remain sad, withdrawn or ‘depressed’ when all physical and psychosocial suffering have been relieved
How do you deal with spiritual or existential distress?
- patients vary greatly in their desire to pursue issues related to either existential concerns or their spirituality
- some will not discuss it
- others just need the presence of a sympathetic person to listen (not necessarily a religious person or a pastoral care worker)
- spiritual care is person-centred and begins at the level of the patients' own insight
- most people are helped by knowing that the questions and doubts that are troubling them are shared by many others
What is Religious Faith?
- religion is the relationship between an individual and God, characterised by belief in, reverence for, and desire to please that God
- for patients who profess a religious faith, their spirituality is usually closely allied with their religion
- patients with religious faith are less likely to have unmet spiritual concerns if their religious needs are met
- in the palliative care setting, a person's faith, no matter how strong or weak, will influence, and be influenced by, everything they experience as death approaches
Can religious faith help the dying?
- most faiths are reassuring that biological death is not the end of life
- believers are comforted
- that there is something after death
- that their wrong doings can be forgiven and their good deeds be credited
- families sharing the same faith
- may help them cope better looking after a terminally ill relative
- may be a source of comfort to the dying patient, confident that faith will help those left behind
- people with a deep religious faith often find it grows as death approaches
- for those with a less well-developed/less tested faith, impending death can be a major challenge to their faith
Can religious faith cause problems for the dying?
- religion does not make living or dying easier, though it may make both meaningful
- religion does not provide all the answers people seek
- people with unrealistic expectations of their religion are usually disappointed
- some people expect miracles
- some expect answers to unanswerable questions
- some expect immediate and sympathetic answers to their prayers
- when these are not forthcoming they may
- blame their religion or even their God
- direct their anger or disappointment against their professional carers
How should religious issues be handled in palliative care?
- there should be unreserved respect for an individual's religious beliefs and practices
- the patient or family should be asked about religious matters including prayer, diet, and routines of personal hygiene
- sacred practices including prayer, sacraments, anointing with oils, the burning of incense, periods of fasting or self-denial, special diets, baptism and many others
are both respected and facilitated
- the manner in which individuals practise their religion must be respected
- a patient's religious needs are assessed on an individual basis
- no two people of the same faith are likely to have exactly the same religious needs
- facilitate arrangements for their priests and teachers to visit them
- support them when their faith feels inadequate for what they are experiencing
- reassure them that the rites of their religion and culture will be fully respected after their death
CARING FOR FAMILIES AND FRIENDS
Care of the relatives and close friends is a central feature of good palliative care
Good care of the patient helps the relatives cope, but they also have their own needs and anxieties that must be addressed, including:
- to do with the patient's illness and care - relatives may be anxious to know about
- what exactly is wrong with the patient
- why the patient is receiving certain treatment
- whether his illness is infectious or contagious
- whether they will be able to care for the patient at home
- how long they will be able to care for the patient at home
- whether their health will be adequate for them to do this caring
- whether they will know how to speak to the patient if he asks about dying and death, particularly if the relatives have tried to keep the truth from him
- whether they will cope with any emergencies that might arise
- when to call the doctor and what help or advice to ask for
- how to give medications
- whether they are giving he patient the right food and drinks
- visiting in hospital
- talking to children and friends about the patient's illness
- to do with their own personal feelings and needs - relatives are often anxious about
- their own health but feel they cannot mention it
- family tensions and how to deal with them
- unresolved interpersonal problems from the past
- unresolved grief from a recent bereavement
- how they will manage when the patient dies - where will they live, who will care for them, where will the money come from
- to do with the society where they live - relatives may be anxious about
- whether it is right to keep the patient at home
- what other people think about their caring
- whether they are demonstrating their religious faith
- whether they should be accepting the unsolicited advice being offered by friends or neighbours
- who to invite to the funeral
- how to behave after the death
- whether they are " doing the right thing "
How should these anxieties be addressed?
- short meetings with the doctor and/or nurse
- to explain everything they want to know about the patient's illness and care
- to ask questions about the illness, treatment and details of what lies ahead
- to ask for information about whatever agencies there are to assist their caring
- to express their fears about the present and both the immediate and distant future
- to talk about their own health and other needs
- to express any anger, resentment, and sadness about the family and other carers
- the relatives must feel these meetings are solely for them and their problems
- most relatives and close friends will appreciate and benefit from these short meetings
- family conferences
- when family tensions are high, or there is feuding within the family
- should be chaired by the doctor with the nurse and social worker in attendance
- the whole family are given details about the patient's illness, investigations, treatment and prognosis
- each family member is then invited to express their feelings, including their anger
- the doctor can then explain how their anger or feuding is not only not helping each of them at this painful time but also affecting the final days of their loved one
- finally they are asked to put interpersonal differences behind them, to try to love or at least tolerate each other, and to appoint one person to be the communications
link between them and the doctors and nurses
At every stage, the palliative care team must ensure that the relatives are being given the care, the attention and the time they need
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