Oxford Handbook of Palliative Care (2 edn)
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Old age is associated with disease, it does not cause it.
The large majority of the population over the age of 85 years live at home; 20% live in nursing homes. Elderly patients with palliative care needs often have a constellation of complex and chronic requirements including:
Management of physical and psychological symptoms of both acute and chronic illnesses
Appropriate therapeutic interventions that can preserve function and independence and help patients maintain quality of life
Clear communication on the usual course of illness so that they and their family members can make appropriate arrangements
Recognition and management of caregiver stress
Elderly people in the UK may receive palliative care in a number of settings, including:
At home with the care of a GP and community team
In a residential or nursing home with support from a GP and nursing staff
In a community hospital
On a care-of–the-elderly unit/facility
In an acute hospital
Background
While a child born in 1900 could expect to live fewer than 50 years, life expectancy for a child born in 2010 is expected to increase to 86 years for a girl and 79 years for a boy.2 The implication for increasing input from supportive and palliative care is clear
In developed nations, the overwhelming majority of deaths occur in elderly patients suffering from multiple coexisting and progressive chronic diseases
Some studies suggest that elderly patients are excluded from life-prolonging interventions even if they might be appropriate. This may be due to de facto rationing based on age rather than an emphasis on individualizing the goals of care. Specialist care-of-the-elderly teams are skilled at devising goals of care that are appropriate for an individual’s particular needs
Data suggests that elderly patients receive less pain medication than younger persons for both chronic and acute pain. Chronic pain syndromes such as arthritis, and other musculoskeletal problems affect 25–50% of the community-dwelling elderly and are also typically under-treated
Carer burden
The tremendous growth in the number of people over 65 years of age with chronic health problems challenges both national and personal resources
In the UK, the duration of caring for an elderly relative can often exceed ten years
Caregiving in general is not valued in western societies, where sometimes those involved in full-time caring can be made to feel that life is passing them by
A large proportion of carers have financial difficulties
Risks to the carer include:
Physical risks
increased mortality—many of the carers are themselves elderly and vulnerable
development of particular conditions, such as musculoskeletal diseases through lifting and handling
Emotional risks
major depression, and associated comorbidities
Social risks
isolation and loss of contact with friends and social circle. Close to 90% of carers say they need more help in caring for their loved ones in one or more of the following areas, including:
personal care
nursing
transportation
loss of income
loss of status within society
How can we address the needs of an elderly, frail and depressed woman who is shortly to be bereaved, and who through the course of caring for her demented husband over many years has lost contact with any support network of friends or family?
Medical goal-setting in the care of the elderly with chronic illness (Table 8f.1)
Table 8f.1 A checklist for palliative care throughout the course of chronic illness in the elderly
| Early | Middle | Late |
|---|---|---|
Discuss diagnosis, prognosis and course of disease | Assess efficacy of disease-modifying therapy Access appropriate support | Discuss changing goals of care with patient and family |
Discuss disease-modifying therapies Manage comorbidities | Review course of disease | Confirm previous Advance Directives |
Discuss goals of care, hopes and expectations | Reassess goals of care and expectations | Actively managesymptoms |
Discuss advance care planning | Confirm Advance Directives and ensure a healthcare proxy is appointed | Review financial resources and needs |
Advise financialplanning/consultation with a social worker for future needs | Recommend physio/occupational therapies to preserve function and promote socialization Review behavioural andpharmacological symptom control | Review long-term care needs and discuss options |
Inform patient and family about support groups Inquire about desire for spiritual support | Treat mood disorders Suggest support groups for patient and caregiver | Consider if palliative care needs are being well met in current care setting |
Review behavioural and pharmacological symptom control | Offer social and emotionalsupport to caregivers | Consider referral/planning to ensure peaceful death |
Treat mood disorders | Review long-term care options and resource needs | Assess spiritual needsOffer respite care |
| Early | Middle | Late |
|---|---|---|
Discuss diagnosis, prognosis and course of disease | Assess efficacy of disease-modifying therapy Access appropriate support | Discuss changing goals of care with patient and family |
Discuss disease-modifying therapies Manage comorbidities | Review course of disease | Confirm previous Advance Directives |
Discuss goals of care, hopes and expectations | Reassess goals of care and expectations | Actively managesymptoms |
Discuss advance care planning | Confirm Advance Directives and ensure a healthcare proxy is appointed | Review financial resources and needs |
Advise financialplanning/consultation with a social worker for future needs | Recommend physio/occupational therapies to preserve function and promote socialization Review behavioural andpharmacological symptom control | Review long-term care needs and discuss options |
Inform patient and family about support groups Inquire about desire for spiritual support | Treat mood disorders Suggest support groups for patient and caregiver | Consider if palliative care needs are being well met in current care setting |
Review behavioural and pharmacological symptom control | Offer social and emotionalsupport to caregivers | Consider referral/planning to ensure peaceful death |
Treat mood disorders | Review long-term care options and resource needs | Assess spiritual needsOffer respite care |
Reproduced from Oxford Textbook of Palliative Medicine.3
Early in illness
Healthcare professionals should discuss goals of care with their patients. These goals may change as the disease progresses but may include:
Prolonging life
Preserving autonomy and independence
Maintaining social activities
Forming a plan for advanced stages of disease
Staying at home
Mid-disease
The middle disease period is characterized by:
Increased medical needs
Declining function
Loss of independence, and increased dependence on caregivers for assistance in basic activities of daily living. For example, patients with dementia require increased supervision, while patients with Parkinson’s disease, heart failure or rheumatological diseases may need more help with ambulation
Patient needs
Treatment for physical symptoms of chronic disease such as pain, dyspnoea, anorexia, nausea, vomiting, changes in bowel habit and insomnia which may become prominent during this phase of disease. These symptoms should be effectively treated as outlined in other chapters
Caregiver needs
Help in supervision of the patient, the lack of which results in great caregiver stress, leading to unnecessary consideration of nursing home placement
Information about local resources for adult day care, respite care, home care services and support groups
Help to maintain physical, financial and emotional strength for the tasks ahead by providing opportunities to discuss and address their particular difficulties
Where appropriate, encouragement of a regular rotating schedule of respite support from family and friends
Home needs
Home evaluation for adaptive devices such as raised toilet seats, shower seats and other equipment
Late in disease of chronic illness
In the later stages of disease, the goals may shift to providing maximum comfort and security.
Patient needs
To be treated as an individual, and as a person with particular characteristics and needs
Careful attention to symptom control as, particularly in the last few months of life, patients may lose the ability to complain of pain and other symptoms (e.g. pain is often under-treated in end-stage dementia.)
Ensuring that their wishes, fears and concerns, as far as possible, are discussed and addressed
Ensure enjoyment of life as much as possible
At this stage of disease, mortality is 50% at six months, and the goals of care shift to minimize suffering and maximize quality of life, according to the values and expressed wishes of the patient
Physicians should discuss the merits, or otherwise, of continuing routine procedures with the patient and carers
Carer needs
Patients in end-stage chronic disease may be bed or chair-bound. They can become completely dependent on caregivers for feeding, toileting, bathing and dressing and are often incontinent, which can be extremely distressing both for the patient and the carer
As patients deteriorate carers can enter a chronic state of loss as they witness their relative’s physical and mental deterioration. Recognition of the loneliness and pain of such a state can bring important comfort and help
Due to increased care demands and exhaustion, the patient’s family may benefit from respite admissions to allow the patient’s choice to stay at home long term to be achieved
Placement needs
It is important that efforts are made to find out where a patient would prefer to die, and where possible to ensure that this decision is, as far as possible, respected
Patients who reside in a nursing home and want to remain there in the comfort and security of familiar surroundings may not want to be transferred routinely to the hospital for intercurrent illness or for symptoms that can be managed in the nursing home. ‘Do not transfer’ instructions should be discussed with the patient, family and staff where possible, and, if appropriate, to prevent an emergency move to an acute setting when the patient’s condition deteriorates
No one place is the ideal setting for terminal care for every person, as physical, emotional and social resources will all need to be balanced in the selection of place of care
Ageist attitudes can inhibit the quality of palliative care available to elderly patients. Such attitudes may be displayed overtly or covertly:
In hospitals— ‘a disproportionate percentage of patients who are left waiting on trolleys for admission in the UK are elderly’
By doctors and nurses—‘He is too old to benefit from a hip replacement’
By relatives—‘Granny wouldn’t want to be told about her disease’
By the elderly themselves—‘Why should anyone bother with me? I’ve had my day’
Common issues in palliative care of the elderly
Physical issues
Infection
The late stages of many terminal illnesses are commonly complicated by life-threatening infections
Immobility, malnutrition, incontinence, lung aspiration and decreased immunity increase the risk of pneumonia, cellulitis, decubitus ulcers, urinary tract infections and sepsis
Decreased ability to express oneself and atypical presentation may lead to delayed recognition of infections
Palliative care should focus on reducing the risk factors for infection by providing patients with good skin care, ambulation training and aspiration precautions
As with all other treatments, the risks and benefits of antibiotic therapy need to be weighed
Pressure ulcers
Many patients who are bedbound, incontinent and poorly nourished do not develop decubitus ulcers. This is due, in large measure, to the quality of care provided
Those who do develop ulcers often do so in spite of excellent care
The appearance of an ulcer may be a marker of deteriorating physical condition rather than a sign of poor medical or nursing care
Use of pressure-relieving mattresses and cushions prior to the development of skin problems and good nursing care are the mainstays in preventing ulcers
In the terminal phase, care should focus on relieving pain and limiting odour, not on ulcer cure
analgesia should be provided prior to all dressing changes
odour can be controlled with topical metronidazole gel, or silver sulfadiazine, or charcoal dressings
Although the development of decubitus ulcers is not an independent risk factor for death, the presence of a pressure wound is a marker of advanced stage disease and poor prognosis
Pain
Treatment of pain in the elderly generally follows the same guidelines as in younger adults. Studies on clinical pain perception indicate that pain from headache and visceral pain decrease in the elderly, but musculoskeletal, leg and foot pain are more commonly reported by the elderly.
Pain is undertreated in the elderly.
Concomitant diseases that are likely to cause chronic pain have a higher prevalence in the elderly and often exist alongside the major cause of pain, i.e. the development of bowel cancer will not prevent a patient from continuing to suffer the pain of rheumatoid arthritis.
Therefore a careful assessment of the actual cause of the patient’s pain(s) is essential.
Nausea and vomiting
Common causes of nausea and vomiting in the elderly include:
Drug reactions, including opioids
Gastroparesis due to autonomic system dysfunction (especially caused by diabetes)
Constipation
Management of nausea and vomiting in the elderly is the same as for younger patients, with particular attention being paid to possible side-effects from antiemetic medication. (‘Start low, go slow.’)
Constipation
Constipation is a nearly universal complaint of elderly patients. Over half of the elderly living in the community give a history of constipation. Risk factors include:
immobility
female gender
depression
chronic diseases
common medications, e.g. opioids, calcium, iron, calcium channel blockers, tricyclic antidepressants and diuretics
Management
A patient who presents with a history of constipation should be given a rectal examination to exclude faecal impaction. (
See Chapter 6b.)
Diarrhoea
If patients are bedbound this symptom can be particularly exhausting and demeaning to patients and caregivers. A pattern of diarrhoea following a period of constipation often signifies overflow incontinence.
The incidence of Clostridium difficile enterocolitis has been highlighted recently as a common cause of diarrhoea in the elderly, particularly after the use of antibiotics (for Management see Chapter 6b.)
Cough
Common non-malignant causes of chronic cough in the elderly include oesophageal reflux disease, COPD and heart failure, and should be treated accordingly. Cough can also be a result of medications such as ACE inhibitors.
Dizziness
Dizziness is a common complaint in elderly patients with chronic disease and may reflect a wide variety of physical problems
The key to good management is a clear assessment, diagnosis and appropriate treatment of the underlying cause
Secondary prevention is also important, reducing the risks of falls through education, and risk assessment of the patient’s home.
Oral symptoms
Elderly patients are particularly prone to developing mouth problems arising as a result of denture problems, medication, mouth dryness and fungal infections.
Infection should be treated appropriately and patients and caregivers instructed on oral hygiene
Medications are the most common cause of dry mouth in elderly patients and should be kept under constant review
When symptoms are not relieved with sips of water or ice, artificial saliva or commercial preparations containing mucin may provide relief
Falls
All patients who have had a fall should have a full history, examination and appropriate investigations looking for reversible causes whether or not they have a terminal illness. The consequences of the fall, e.g. hip fracture, subdural bleed, etc. will need managing on an individual basis according to clinical frailty and patient’s wishes.
Assessment should include the following.
Blood pressure
Postural hypotension should be assessed by measuring the blood pressure both lying and standing. If there is a significant blood pressure drop on standing, reversible possibilities should be sought such as medication (e.g. diuretics, antihypertensives, antimuscarinics, beta-blockers, phenothiazines, withdrawal of steroids), anaemia, dehydration, insufficient adreno-cortical function, etc. Patients should be advised to rise slowly from a lying/sitting position, to sleep propped up with pillows and to consider support hosiery. If no obviously reversible cause is found, treatment with fludrocortisone 0.05–0.1mg o.d. may be appropriate.
Medication review
Consider reducing or stopping:
Hypotensive drugs: antimuscarinics, beta-blockers, phenothiazines, etc.
Sedative drugs: benzodiazepines, opioid analgesics etc.
Anticonvulsants (ataxia)
Corticosteroids (proximal myopathy)
Neurological assessment:
Spinal cord compression
Cerebellar dysfunction
Parkinson’s disease or extrapyramidal symptoms
Long tract signs suggestive of hemiparesis, etc.
History suggestive of a seizure, TIA, etc.
Physiotherapy assessment:
Balance
Transfers
Gait
Emotional issues
It can be particularly challenging in the elderly to differentiate between dementia, depression and delirium. The distinction is crucial, as adequate management of both delirium and depression may significantly improve the patient’s quality of life.
‘A syndrome consisting of progressive impairment in two or more areas of cognition sufficient to interfere with work, social function or relationships in the absence of delirium or major non-organic psychiatric disorders.’
Some 5–8% of all people over the age of 65 suffer from moderate to severe dementia, with the prevalence doubling every 5 years reaching over 20% in 80 year olds.
Up to 70% of patients with dementia may suffer from insomniaor ‘sun-downing’, a syndrome of increasing confusion during the evening
daytime exercises, a consistent bedtime routine and minimizing daytime napping can help improve sleep patterns
encouraging patients to participate in their own grooming and bathing may decrease agitation
sponge baths and adjusting water temperature may make bathing less threatening
familiar music and frequent social activities may also exert a calming influence
Low doses of neuroleptics can ameliorate confusion, hallucinations and delusions
Where medication is required then haloperidol 0.5mg p.o. can be given two-hourly up to a maximum dosage of 5mg in 24 hours. (British Geriatric Guidelines, Jan 2006) While second-generation antipsychotic drugs (risperidone and olanzapine) cause less extrapyramidal toxicity than first-generation antipsychotics, concern about cardiac side-effects limit their use in this situation. All patients still need to be monitored for parkinsonism, and doses should always be started as low as possible to minimize side-effects
Successful management of agitation can prevent hospital admissions and nursing home placement
Being elderly and ill can often provoke considerable anxiety. Such anxiety may relate to:
Concern about the process of dying: they may have had bad experiences of illness and death which lead them to anticipatethat their end of life will inevitably be painful, undignified and difficult
Concerns about leaving dependent relatives
Concerns about unresolved conflicts or issues within the family
Concerns about financial or housing matters
Anxiety may be helped by open discussion and isolation of the particular points of concern. General, non-specific, ‘don’t worry’ advice tends to increase rather than decrease anxiety levels, as patients need a plan as to what they can do to address their concerns.
Prescribing in the elderly
This is a huge issue, and each year many patients (particularly the elderly) are admitted to hospital due to the effects of injudicious prescribing.
Particular concerns include the following:
Decreased renal function and liver metabolism places elderly patients at higher risk of drugs accumulating to toxic levels
Multiple complex physical and psychological conditions can lead to a wide range of medication being prescribed for different complaints, with increasing likelihood of drug interactions causing dangerous side-effects
Complex prescribing schedules and lack of support networks can lead to irregular medicine ingestion, with higher risks in a population where memory, eyesight and dexterity may not be as good
It is easier to increase medication than it is to reduce or stop drugs which have been started by another specialist team
Elderly patients may be particularly sensitive to the confusional side-effects of medication; therefore, it is important to exclude iatrogenic cause(s) in situations where patients suddenly exhibit confusion
Medication which a patient has taken faithfully for many years to help with a symptom due to, for example, high blood pressure may no longer be strictly necessary, but the patient or family may have a belief in that particular tablet, which makes stopping it even in the last days of life very difficult
Routes of administration can become an important issue in prescribing if an elderly patient loses the ability to swallow
General rules
Give as few medications as possible
Start medication at low doses and slowly increase
Regularly review medication and reduce any unnecessary tablets
Use pre-filled drug administration boxes or other devices that may help with concordance
Remember that age should not exclude patients from either effective, expensive or innovative drug therapy where it is appropriate, and prescribe with care and consultation
Ethical issues
Artificial nutrition and hydration
( See Chapter 1.)
General issues
Patients suffering from end-stage dementia as well as other chronic neurological illnesses may develop dysphagia, which predisposes them to aspiration pneumonia
In the late stages of dementia, patients frequently refuse food, clamp their mouths shut, or hold food without swallowing
Feeding may become a frustrating battle between the patient and caregiver, who may feel that the patient is deliberately being difficult.
Carers will need support and information to understand that this may be involuntary and due to the dementia
Possible management options
Changing the texture of the diet to a purée, or liquids thickened with cornstarch or potato starch, may support safe swallowing
Improving the taste of food may provide increased enjoyment of the process of eating
Training caregivers to feed the patient in an upright position, with the head forward, using small spoonfuls
Artificial nutrition and hydration is an emotionally charged issue for many caregivers. They may believe that their loved one would suffer hunger without artificial nutrition and hydration.
Family members should understand that loss of appetite is an integral part of the dying process.
Full assessment is necessary to exclude a reversible cause.
Decisions regarding the appropriateness of commencing artificial feeding need to be taken with great care and sensitivity and involve the full multidisciplinary team as well as the patient’s formal and informal carers.
The process of decision formation at this critical time needs to be conducted thoroughly so that where possible a consensus can be reached.
Very little is known about the degree to which patients with severe dementia experience hunger or thirst, but great comfort can be given to caring families if they can continue to provide their loved one with small amounts of comfort food
For a fuller discussion of these issues see Chapter 1.
Common sources of suffering and discomfort in the elderly
Patients may suffer even when they are free of pain or other symptoms
Healthcare professionals need to ask about suffering as well as pain
Questions should be open-ended in order to help make the patient feel comfortable with discussing fear, anxiety and other non-physical symptoms: ‘How are you feeling inside yourself?’
A sample question to family members is, ‘Are you concerned that your family member may be suffering or uncomfortable?’
As in younger patients, relief of pain goes hand in hand with treatment of the emotional and spiritual components that contribute to it.
Care of the carer
Carers of elderly patients in the end-stage of chronic disease often need as much or more attention from the medical team as the patient. While family carers may take enormous satisfaction from their ability to provide safe and loving care for their loved one, most also feel varying degrees of exhaustion, guilt and frustration.
By listening to and trying to help address the concerns of carers, the medical team conveys the fact that the carer is not alone and that their concerns are legitimate and important
Carer stress does not end after placing the patient in a nursing home
Carers continue to worry about the patient as well as suffering guilt over the necessity of nursing home placement
Carers universally have to face difficult medical (and goals of care) decisions when the questions arise of tube feeding, hospitalization for predictable infection and use of antibiotics
Concern exists within the palliative services of being overwhelmed by elderly patients with chronic long-term care needs:
Although hospice care may be appropriate for certain patients with end-stage dementia and other chronic illnesses, a hospice is accessed less frequently for these patients than for those with cancer. This may be because it is more difficult to accurately identify a limited prognosis among such patients
The needs of elderly patents suffering from long-term illnesses in the last year of life may far exceed the needs of patients with malignancy, yet the services available to meet those needs are often much fewer
Quality palliative care does not require admission to a hospice, but does require access to a healthcare team committed to providing holistic, individualized, planned and communicated care in whatever setting is appropriate for the particular patient
Conclusions
Growing old is a natural process which often changes our bodies, minds and what we regard as being important. A life which has been well lived can provide an elderly person with great comfort and satisfaction as they contemplate their pending death.
Having the opportunity to ‘sort things out’ and to ‘tidy up loose ends’ can provide ease of mind to someone who is coming to the end of their life, and is a process that should be facilitated and not regarded as ‘morbid’.
The essence of palliative care is providing holistic care tailored to the particular needs of the individual patient. The same can be said of care of the elderly.
Remaining open to all the possibilities of old age and the dying journey will prevent our care of the elderly in this very important part of their lives becoming stereotyped or sentimental and will help carers face the realities of their own mortality.
