How Can We Help?
Patient perspectives
Personal priorities.
Humans vary in what they think is important, and the same person will change priorities at various times in his or her life. Ill elderly patients may put a higher value on their reduced quality lives than young healthy persons (such as doctors) trying to imagine themselves in that state.
Variables that can influence a patient’s priorities include:
Age. Conventionally the elderly are considered likely to put less value on longevity and more on quality, but when actually asked this isn’t always true.
Individuals with young families place priority on both nurturing and support functions and are ready to endure short-term discomfort for longer-term gains.
HIV status. Young persons with HIV often have a profound sense of disappointment and waste. Without hope and direction from family and caregivers they may be very demotivated and put little effort into health seeking behaviours.
Completed goals. A mother whose children are now self-sufficient, or a patient with cancer disease who has said good-bye to all his family, or even a person with COPD who has survived to a landmark birthday, may declare enough is enough.
Perception of health value. A person with a new job may be reluctant to jeopardise this employment simply for checking up on asymptomatic hypertension.
An individual with previous unfavourable experiences in the healthcare system may be reluctant to re-embark on further diagnostic or therapeutic adventures.
It can be rewarding to elicit some of these perspectives from patients. Beware, however of attempting to palm off your own priorities or biases onto the patient.
Spirituality
Illness, especially when serious or obscure, tends to have a ‘spiritual’ component. There may be a tendency to feel that the illness is punishment for some or other wrongdoing, and patients may feel a need to appease ancestral spirits who have withdrawn their usual protection. This may mean that ‘western’ medicines cannot be used because this would invalidate the appeasement process – patients with this conflict may feel obliged to abscond from potentially life-saving treatment.
Traditional treatments may sometimes be biologically harmful – e.g. sepsis or tetanus from scarification, colitis or septicaemia from enemas.
Costs of attendance.
Coming for a hospital check-up may be financially crippling or impossible, and often one needs to adapt one’s ideals regarding timing and frequency of visits. Requesting patients to do something that they cannot do generates guilt and frustration; rather have the patient seen locally if possible (use the available clinics).
Patients who ‘abscond’ from follow up often do so for financial reasons rather than disinterest in their health; be empathic to their problems, and try and devise a compromise solution which will work for them. Also, many patients have erratic incomes, and while willing to attend, may be embarrassed to admit that they don’t know if they can afford the next visit. Ask about financial difficulties and adjust visits to occur after an expected pay time.
Adult abuse and neglect
Setting:
Old, frail, or mentally disadvantaged.
Valued as an income source (grant or pension) rather than a loved relative.
Difficult to care for – irascible, deaf, blind, messy, confused.
Poor coping skills of carers – no training in care, no alternative emotional outlets.
Conflicts of carers – a need to earn money versus a need to care for a sick relative.
Single carer – little extended family support.
Substance abuse – either carer or patient or both.
Signs of abuse
Seemingly irrational attendance at hospital – ‘why bring her now?’ This may signify that the carer is simply at end of his or her tether.
Poor medication compliance history.
Poor personal hygiene.
Bruising – this can be subtle, and as in children, may be assumed to be accidental.
Rapid improvement in general condition in hospital (fed, hydrated, changed).
Reluctance to return home – generation of new complaints as discharge looms.
Management of adult abuse
Like many geriatric problems, interventions should be multifactorial.
Don’t be confrontational – you may be wrong!
Acknowledge the carer’s difficulties.
Obtain financial/social grant support if warranted.
Try to facilitate recruitment of other family members to share the load.
Involve home-based care team or NGOs.
There is a legal requirement to report elder abuse.
Perspective – risk factors for elder abuse
There is adequate evidence for all of the following being risk factors[1]:
- Living with someone (rather than alone).
- A dementing process.
- Social isolation (from friends and wider relative pool).
- Alcohol abuse or mental illness among the carers.
- Economic dependence of the abuser on the abused.
Home-based care
Home-based care exists in many forms and is varyingly successful. There is generally some form of it available, from rather informal church associated volunteers to well-organised and funded community-based projects.
Try to keep an open door approach to professional carers – they are generally doing a good job and won’t bother you unless they are genuinely in need of assistance. It is disheartening (and unnecessary) for experienced and dedicated community personnel to be given the brush-off by haughty hospital staff.
A well-run and adequately supported community based home care programme can have a dramatic effect on admission rates and is worth encouraging and physically supporting when staff come to you with queries.
Counselling about death and dying
Talking to patients and relatives about issues surrounding death is important, and you should pay scrupulous attention to doing it well. When asked to speak to the relative of someone who has just died, understand that you have something of value to offer. A checklist might include:
Introduce yourself and offer your condolences.
The relatives may be at any stage of the bereavement process when you meet them – denial, anger, grief or acceptance are all possibilities. Keep calm.
Explain what happened at the end, and what the immediate cause of death was.
Remember this interaction is to help the relatives to come to terms with their loss, not a chance to justify doubts you may have about your handling of the illness.
If the relatives have doubts about the immediate pre-mortality management, address them as sympathetically as possible.
Check that there are no questions, and invite the relatives to come back if any questions occur to them at a later stage.
We also all have patients who for various reasons affect us personally; accept this and if necessary talk to a friend or a colleague – it helps. Also recognise that such patients may put you off balance for a few days – this is normal.
Medico-legal issues
Litigation in the public sector is increasing; some commentators consider this to be related to changes in the regulation and administration of the Road Traffic Accident Fund making this a less attractive practice opportunity for lawyers. Whatever the case, there can be no doubt about the increase in both the volume and size of awards, the impact this has on already strained public sector health budgets, and mindset changes (often but not always for the better) in how medicine is practiced.
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System issue |
Clinical examples |
Ways to reduce risk |
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Medical errors | ||
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Diagnostic |
Missed pulmonary embolus |
Beware of ‘framing effect’ –primed to accept an alternative diagnosis Use ‘what if it isn’t’ thinking tool to increase diagnostic list Always write down a differential diagnosis |
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Missed myocardial infarction | ||
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SAH treated as bacterial meningitis |
Concentrate on the outlier – i.e. bacterial meningitis CSF with a bloody tap actually SAH | |
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Procedural |
Radiographic contrast induced anaphylaxis |
Was the procedure really necessary? Did I take good informed consent? Am actually I aware of the numeric magnitude of the risks before taking consent? |
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Coning after lumbar puncture |
“Pre-flight checks’ before LP – conscious, nil focal, no papilledema. Is this all documented? | |
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Ischaemia after failed tourniquet removal |
‘Post-flight checks’ – have I really finished here? Increased alertness if distraction happened. | |
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Therapeutic |
Penicillin anaphylaxis |
Ask about allergies before prescribing? Was the drug necessary? Did I check notes for documented allergies? |
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Delay in antibiotic administration in meningitis |
Think of door to antibiotic time; endeavour to give first dose at initial clerking. | |
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Follow up |
Failure to notice/ act on low [K+] concentration |
Safety plan. Who must collect the result? When/ What must be done with result? |
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Narrative discordance | ||
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Sudden death |
Pulmonary embolism in responding pneumonia |
Unexpected occurrences are common when dealing with very ill patients. Remind patients and family of ongoing uncertainty. Explaining what happened and why may help generate an acceptable new narrative |
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New disability |
Embolic stroke in infective endocarditis | |
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New deterioration |
Deafness in cryptococcal meningitis on treatment | |
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Unexpected burdens | ||
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Stroke |
Young woman on oral contraception |
The attempt to find financial support by trying all options is sometimes quite rational; the clinician’s role is often to counsel families or other relatives where lawyers may have overplayed the chances of successful litigation. |
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Paraplegia |
Tuberculous vertebral disease | |
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Cognitive loss |
After pneumococcal meningitis |
So themes of careful practice include:
Plan patient pathways – have your got the correct diagnosis? Have you planned a safe investigative and therapeutic pathway?
Have you communicated effectively? With patient and family; documentation legible and intelligible?
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Lachs MS, Pillemer K. Elder abuse. Lancet. 2004;364:1263-72. ↑