
Contents
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Breaking bad news Breaking bad news
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Who should be told bad news? Who should be told bad news?
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Bereavement Bereavement
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Normal stages of grief Normal stages of grief
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Abnormal grief Abnormal grief
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Risk factors for abnormal grief Risk factors for abnormal grief
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Palliative care Palliative care
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General principles of palliative care General principles of palliative care
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At the very end At the very end
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Symptom control in the terminally ill Symptom control in the terminally ill
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Pain Pain
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Nausea and vomiting Nausea and vomiting
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Constipation Constipation
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Anorexia Anorexia
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Dyspnoea Dyspnoea
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Confusion Confusion
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Dehydration Dehydration
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‘Death rattle’ ‘Death rattle’
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Further reading Further reading
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Documentation after death Documentation after death
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Verification of death Verification of death
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Certification of death Certification of death
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Cremation forms Cremation forms
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Other issues after death Other issues after death
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Bereavement services Bereavement services
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Postmortems Postmortems
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The registrar The registrar
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The coroner The coroner
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Cite
Breaking bad news
Geriatricians frequently break bad news. No matter how old and frail the patient, the news can always come as a devastating blow. Equally, news that may seem bad may be taken well—someone who has felt unwell for ages may welcome an explanation, even if it means a terminal diagnosis. Sometimes they will have been expecting worse (‘I've had a stroke? Thank God it isn't cancer’).
▸Each case needs to be considered individually and carefully modified as reactions become apparent.
Who should be told bad news?
Information about a patient's diagnosis and prognosis belong to the patient, and that individual has a right to know. The paternalistic tendency to ‘protect’ a patient or their relatives from bad news is now largely obsolete, but some patients and relatives still believe this exists and this may need to be corrected
Very often, fears that an older person will not cope with bad news are unfounded. They may not have asked questions because they are not culturally used to quizzing doctors, but will often have an idea that something is wrong. Anxieties about remaining family members (particularly spouses) can be addressed once everyone knows a patient's diagnosis and management plan. Open dialogue may ease distress
Equally, there are some older people who simply do not wish to know details about diagnosis and prognosis, preferring to trust others to make decisions for them. It is inappropriate to force information on such patients and crucial to identify them. Approaches range from blunt questioning—‘If you turn out to have something serious, are you the sort of person who likes to know exactly what is going on?’ to a more subtle line—‘We have some test results back, and your daughter is keen to talk to me about them. Would you like to know about them too?’ The response to this is usually informative—either ‘Yes, of course I want to know’ or ‘Oh, well I'd rather let my daughter deal with all that’
Well-meaning relatives (usually children, who are more used to challenging authority) may be more proactive in seeking information than the patient, and then try to shield their relative from the truth, believing that they would not be able to cope. In such situations, try to avoid giving information to relatives first—explain that you cannot discuss it with them without the patient's permission. Be sympathetic—these wishes are usually born from genuine concern. Explore why they don't want news told, and encourage reality—the patient knows that they are unwell and must have had thoughts about what is wrong. Point out that it becomes almost impossible to continue to hide a diagnosis from a patient in a deteriorating condition and that such an approach can set up major conflicts between family and carers. Be open—tell the relative that you are going to talk to the patient, and promise discretion (ie you will not force unwanted information). A joint meeting can be valuable if the patient agrees. They may be right, and the patient does not want to be told, but establish this for yourself first and always get permission from the patient before disclosing details to anyone else
Make an appointment and ensure that there will be no interruptions
Ensure that you are up to date on all the latest information—about the disease itself and the latest patient condition. (Have you seen them that morning?)
Talk in pleasant, homely surroundings away from busy clinical areas
Ensure that you are appropriately dressed (eg not covered in blood from a failed resuscitation attempt)
Suggest that family members or friends come along to support
Invite other members of the MDT (usually a nurse) who are involved in the patient's care
Begin with introductions and context (‘I am Dr Brown, the doctor in charge of your mother's care since arriving in the hospital. This is Staff Nurse Green. I already know Mrs. Jones but perhaps I could also know who everyone else is?’). It is sometimes useful to make some ‘ice-breaking’ non-medical comments (eg ‘How was the journey?’), but do not be flippant
Establish what is already known (‘A lot has happened here today—perhaps you could begin by telling me what you already know?’ or in a non-acute setting ‘When did you last speak to a doctor?’)
Set the scene and give a ‘warning shot’. (‘Your mother has been unwell for some time now, and when she came in today she had become much more seriously ill’ or ‘I'm afraid I have some bad news’)
Use simple jargon-free language to describe events, giving ‘bite-sized’ chunks of information, gauging comprehension and response as you go
Avoid euphemisms—say ‘dead’ or ‘cancer’ if that is what you mean. Avoid false reassurances and platitudes
Allow time for the news to sink in—long silences may be necessary; try not to fill them because you are uncomfortable
Allow time for emotional reactions, and reassure in verbal and non-verbal ways that this is an acceptable and normal response
Encourage questions
Do not be afraid to show your own emotions, while maintaining professionalism—strive for genuine empathy
Summarize and clarify understanding if possible. If you feel that the message has been lost or misinterpreted, ask them to summarize what they have been told, allowing reinforcement and correction. Complex medical terms are usefully written down to take away and show to relatives or look up
Someone should stay for as long as is needed, and offer opportunity for further meeting to clarify questions that will come up later
Document your meeting carefully in the medical notes
Bereavement
Common experience in older people—causes huge psychological morbidity. A quarter of older widowers/widows develop clinical anxiety and/or depression in the first year.
▸The grieving process is amenable to positive and negative influences, so awareness of those at risk can help target care.
Normal stages of grief
Not linear—often go back and forth between stages.
Shock/denial: lasts from minutes to days. Longer if unexpected death. Resolves as reality is accepted
Pining/searching: feel sad, angry, guilty, vulnerable; urge to look back and search for the dead person; restless, irritable, and tearful. Loss of appetite and weight. Poor short-term memory and concentration. Resolved by feeling pain and expressing sadness. May be hampered by social or cultural pressures to behave in a certain way
Disorganization/despair: feel life has no meaning. Tend to relive events and try to put it right. Common to experience hallucinations of the deceased when falling asleep (reassure that this is normal). Resolves as adjust to the new reality without the deceased
Reorganization: begin to look forward and explore a new life without the deceased. Find things to carry forward into the future from the past. May feel guilt and need reassurance. Period of adjustment
Recurrence: grief may recur on anniversaries, birthdays, etc.
Abnormal grief
Hard to define as everyone is different (both individual and cultural variability) and the process cannot be prescribed. In general, weight is regained by 3–4 months, interest is regained after several more months, and the beginnings of recovery have usually been recognized by 2 years.
Risk factors for abnormal grief
These include:
Sudden or unexpected loss
Low self-esteem or low social support
Prior mental illness (especially depression)
Multiple prior bereavements
Ambivalent or dependent relationship with the deceased
Having cared for the deceased in their final illness for more than 6 months
Having fewer opportunities for developing new interests and relationships after the death
Although older people are generally more accepting of death than younger people, they commonly have a number of these risk factors (eg an 80-year-old man who has cared for his demented wife for 3 years prior to her death, is likely to have had an ambivalent relationship as well as being her carer. He may have limited social support and opportunity for alternative social contacts).
▸Older widowers have the highest rate of suicide among all groups of bereaved persons
Identify those at risk of abnormal grief (see ‘Risk factors for abnormal grief’, p.640)
Encourage seeing the body after death if wished
Encourage involvement in funeral arrangements
A visit by the GP after death to answer questions, or a meeting with the hospital team can be very helpful
Good social support initially is crucial and professional/voluntary groups (eg CRUSE at www.crusebereavementcare.org.uk) or counsellors can be helpful if family/friends are not present
There needs to be permission for ‘time out’ and reassurance that they are experiencing a normal reaction
As time goes on, setting small goals for progressive change can structure recovery
For the confused, older patient, repeated explanations, and supported involvement in the funeral and visiting the grave have been shown to reduce repetitive questioning about the whereabouts of the deceased.
Palliative care
Death is inevitable. Physicians should acknowledge their limitations, not seeing every death as a personal or system failure. Society has a misperception that medical technology can always postpone death—this should be addressed, and death portrayed when appropriate as a natural and inevitable end.
Palliative care is concerned with the holistic management of a patient in whom death is likely to be soon and where curative treatments are no longer possible. It aims to help the patient (and relatives) come to terms with death while optimizing the quality of the time left. It involves an MDT approach, with attention to relief of physical symptoms and to social, psychological, spiritual, and family support.
Traditionally used in cases of incurable cancer (where a diagnosis has often been made and a prognosis given), the approach is valuable in many other situations. Death from, eg end-stage heart failure is as predictable as death from cancer, yet application of palliative care measures is less frequent. Discussing impending death with a patient is often difficult for doctor and patient, but it allows the goals to shift from hopeless (patient cure) to realistic and achievable (planning a good death). With the complexity of illness in older people, deciding when death is inevitable can be difficult and there is often a degree of uncertainty—not least about timescale—but the rewards to the patient and carers are many.
Most people die not in a hospice, but in other settings—sometimes an acute hospital but more typically in a community-based facility (eg a community hospital or care home) or their own home. The challenge that health professionals often face is to deliver the more desirable characteristics of hospice care in a less specialist setting. That is usually achievable—primary and secondary care teams have huge experience and skills in caring for the dying patient, reinforced when necessary by specialist palliative care teams. But patients and families often need reassurance that exemplary end-of-life care can be delivered outside the hospice setting, in all but the most challenging cases.
General principles of palliative care
All symptoms should be evaluated and a diagnosis made, based on probability and pattern recognition
Explanation of cause and planned treatment empowers the patient and keeps expectations realistic
Treatment involves correcting what can be corrected (eg treating oral candida that is contributing to anorexia), counselling to help patients accept the limitations imposed by the disease (eg a patient with COPD may never be able to walk in the garden, but supplying a wheelchair will allow them to be taken), and drugs to control symptoms
Treatment is planned for each individual with careful attention to detail. Effects are monitored closely, and treatment discontinued if ineffective
At the very end
Basic care should always be continued (warmth, comfort, shelter, freedom from pain, cleanliness, symptom control, offer of oral nutrition, and hydration)
‘Artificial’ nutrition and hydration (ie that which bypasses swallowing) is considered by many to be a treatment, and as such may be withheld
Simplify medications. Use subcutaneous routes where appropriate
Communication with the patient and family becomes even more important—continue regular visits, even if there is no apparent change
Ask nurses and family about concerns they have (eg pain on turning)
Enlist help from specialist palliative care teams if symptom control is difficult
A proactive, positive approach at this time can transform the experience of losing a relative
The Liverpool Care Pathway for the Dying Patient (LCP) is used increasingly in the UK. It lays out systematically the elements of care that may form part of best quality care of a patient in the last hours or few days of life.
Such a pathway may be appropriate when the MDT (often comprising an experienced nurse and doctor) is agreed that a patient will inevitably die in the near future (ie that reversible causes have been excluded). Where there is doubt, a second opinion is often helpful.
Sometimes treatments given to relieve symptoms can worsen the underlying disease, eg opiates given for pain also cause respiratory depression.
It is not a duty of the physician to prolong life at all costs. The British Medical Association states: ‘A single act having two possible foreseen effects, one good and one harmful, it is not always morally prohibited if the harmful effect is not intended.’ In other words, if the primary aim of the morphine is to relieve pain, and a secondary (foreseen) consequence of this is respiratory depression and death, then the primary aim justifies the secondary consequence.
Good communication with family and other members of the team ensures that everyone understands the rationale behind a treatment plan.
Symptom control in the terminally ill
▸Is delivered usually by general primary and secondary care teams, not by palliative care specialists.
Pain
Use the analgesia ladder, starting with non-opioids (paracetamol, NSAIDs)
Next, add weak opioids (codeine, dihydrocodeine, tramadol); escalate the dose then replace with strong opioids (eg morphine slow release). Give regularly and treat all side effects (nausea, constipation)
Aim to give orally if possible, but consider subcutaneous bolus/infusion, transdermal or rectal routes if necessary
Identify likely cause(s)—there may be different pains with different causes in one individual—and target treatment to cause
Neuropathic pain is often opioid responsive, but antidepressants and anticonvulsants can be added
Treat muscle spasm with physiotherapy, heat, antispasmodics and benzodiazepines
Treat nerve compression pain with steroids
Nausea and vomiting
Identify cause—is it reversible? (eg medication, hypercalcaemia, bowel obstruction)
Give small portions of palatable food, avoid strong smells
Use regular antiemetics:
Metoclopramide is indicated when there is gastritis, stasis and functional bowel obstruction
Cyclizine is used with raised intracranial pressure and functional bowel obstruction
Haloperidol treats chemical causes such as hypercalcaemia
Domperidone
Ondansetron
Constipation
Start with a stimulant laxative (eg senna) or stool softener if not on opiates depending on stool characteristics
Opiates cause decreased peristalsis; a stimulant laxative is usually appropriate
Danthron-containing stimulant laxatives are banned in all but terminal care, as they may be carcinogenic. They also cause skin burns so are usually avoided in incontinent patients
Suppositories, enemas or digital evacuation may be needed
Anorexia
Normal in advanced cancer, and other conditions as death approaches
Family concerns may be the main problem—they may feel their relative is giving up
Deal with this directly—eating more will not alter the outlook and pressurizing the patient can make them miserable
Decrease medications that cause nausea or anorexia (opiates, SSRIs)
Give good mouth care
Help with feeding if weak
Offer frequent small meals
Prokinetics (eg metoclopramide) or steroids (prednisolone, medroxyprogesterone) may help
Dyspnoea
Treat cause (transfuse for anaemia, drain effusion, etc.)
A terrifying symptom—plan approach for how to deal with an attack without panicking
Oxygen can help, as can an anxiolytic or opiates, fresh air or fans, and physiotherapy if mucus retention is an issue
Confusion
Identify cause (infection, drugs, withdrawal from alcohol, electrolyte imbalances)
Nurse in calm, well-lit environment. Relatives can often help with reorientation
Drugs (eg haloperidol, benzodiazepines) should be used only when non-drug measures have proven ineffective
Dehydration
Dying patients drink less (weakness, nausea, decreased level of consciousness) but often do not feel thirsty
Good mouth care is all that is required where the decreased intake is part of the dying process and the patient is not distressed by thirst
Reassure relatives (and staff) that it is the disease that is killing the patient, not the dehydration
‘Death rattle’
The patient is usually unaware. Reassure the family of this
If excess secretion is causing distress or discomfort to the patient or the family, use hyoscine butylbromide, hyoscine hydrobromide, or glycopyrronium (available subcutaneously or as patches)
Further reading
Is the subcutaneous route appropriate? |
• Use regular oral route where possible • Consider when: • Vomiting/nausea/malabsorption • Difficulty swallowing, eg near the end or if semi-conscious |
Is the patent already on an opiate? |
• Calculate the current total dose given per 24hr (including prn administration) • Has this been adequate? (Ask nurses, family, and patient) • Convert the oral opiate dose to an equivalent parental dose (see • If starting strong opiates de novo, start low (eg 1mg/hr morphine with allowances on the prn side for breakthrough pain) • Morphine is cheaper and more readily available, but diamorphine is more soluble so can be given in a smaller infusion volume and is less likely to precipitate with multiple other drugs. Morphine has about 2/3 potency of diamorphine |
Are there any other symptoms? |
• Other agents can be added to the pump • Eg metoclopramide for nausea (30–60mg/24hr) • Hyoscine hydrobromide for respiratory secretions (0.6–2.4mg/24hr) • Haloperidol for nausea, restlessness and agitation (5–15mg/24hr) • Midazolam for sedation (10–60mg/24hr) |
Write the prescription |
• How large are the infusion pumps on the ward? (Usually 10mL or 50 mL) • Are the components compatible with each other, and water for injection eg diamorphine 30mg + haloperidol 5mg made up to 10mL with water for injection, run in s/c syringe driver over 24hr |
Reassess every 4–6hr |
• Do not wait for 24hr • Check whether there has been good symptom control—if not, increase the dose • Check for side effects (eg drowsiness)—consider decreasing the opiate or benzodiazepine dose • Check whether any prn doses have been used—add these to the next total dose you prescribe |
Is the subcutaneous route appropriate? |
• Use regular oral route where possible • Consider when: • Vomiting/nausea/malabsorption • Difficulty swallowing, eg near the end or if semi-conscious |
Is the patent already on an opiate? |
• Calculate the current total dose given per 24hr (including prn administration) • Has this been adequate? (Ask nurses, family, and patient) • Convert the oral opiate dose to an equivalent parental dose (see • If starting strong opiates de novo, start low (eg 1mg/hr morphine with allowances on the prn side for breakthrough pain) • Morphine is cheaper and more readily available, but diamorphine is more soluble so can be given in a smaller infusion volume and is less likely to precipitate with multiple other drugs. Morphine has about 2/3 potency of diamorphine |
Are there any other symptoms? |
• Other agents can be added to the pump • Eg metoclopramide for nausea (30–60mg/24hr) • Hyoscine hydrobromide for respiratory secretions (0.6–2.4mg/24hr) • Haloperidol for nausea, restlessness and agitation (5–15mg/24hr) • Midazolam for sedation (10–60mg/24hr) |
Write the prescription |
• How large are the infusion pumps on the ward? (Usually 10mL or 50 mL) • Are the components compatible with each other, and water for injection eg diamorphine 30mg + haloperidol 5mg made up to 10mL with water for injection, run in s/c syringe driver over 24hr |
Reassess every 4–6hr |
• Do not wait for 24hr • Check whether there has been good symptom control—if not, increase the dose • Check for side effects (eg drowsiness)—consider decreasing the opiate or benzodiazepine dose • Check whether any prn doses have been used—add these to the next total dose you prescribe |
Documentation after death
Verification of death
This is the confirmation that death has occurred and may be performed by an appropriately trained doctor, nurse, or paramedic before a body can be moved to the mortuary. It is recommended that you look for:
Absence of response to pain/stimulation
Fixed dilated pupils
Absence of a pulse, heart sounds, respiratory movements and breath sounds (check for at least 30sec)
Some of these tests can be done simultaneously to save time. Always record your findings in full along with the time of death, persons present, and the time of verification.
Certification of death
This is the writing of a death certificate. It is an important duty and legal requirement of the doctor that has recently been looking after the patient—it allows the family to arrange a funeral and provides very important statistics for disease surveillance and public health.
Inexperienced doctors tend to record the mechanism of death rather than the underlying cause, which may lead to under-representation of the real pathology in national statistics. Patients die of dementia and stroke although their complications, eg aspiration pneumonia may be the last thing that was treated
Always record as much information as possible, eg:
Ia Aspiration pneumonia
Ib Left total anterior circulation infarction
Ic Non-insulin dependant diabetes, atrial fibrillation
II Parkinson's disease, peripheral vascular disease
is more informative than:
Ia Pneumonia
Ib Stroke
Be as precise as possible. For example:
When stating cardiac/renal/liver ‘failure’, qualify it with a more precise cause (eg heart failure due to ischaemic heart disease)
When a patient died of a septicaemic syndrome, where possible state the causative organism and source (eg ‘Escherichia coli bacteraemia due to ascending urinary tract infection’)
Old age is an acceptable cause of death in the very elderly person who has had a non-specific decline and reasonable assessments to exclude serious treatable disease
Use section II to record other diagnoses, which are often multiple in older people. Multiple causes can be stated on one line
You must have seen the patient alive during their recent illness (usually in the last 2 weeks) to write a certificate—sometimes the GP writes a certificate for a hospital patient and vice versa if the patient has recently moved between sites
The process of death certification is currently being reformed in the UK to incorporate a medical officer who will issue all certificates in a locality
Cremation forms
There are two parts to a cremation form, completed by different doctors who should not be related or work on the same team. You must have looked after the patient in their terminal illness to complete Part I. If you do not know the patient well, examine the body, the CXR, and the ECG for evidence of a pacemaker.
In contrast, a Part II doctor should not have known the patient and is required by law to be an impartial examiner of the case before the evidence (the body) is cremated. You must be a senior doctor (2 years post-MRCP/FRCS) to complete Part II. Ensure that you have seen the medical notes, and have personally questioned the Part I doctor and one other person who knew the deceased (another doctor, nurse or relative). If there are problems with the certificate or the Part I they can be corrected or reissued. Sometimes you may need to suggest the case is discussed with the coroner.
Following the UK scandal surrounding Dr Shipman in which cremation forms did not highlight a problem, the government is reviewing the protocols surrounding death and cremation. Cremation forms in their current iteration are likely to disappear.
Other issues after death
Bereavement services
Most hospitals now have a bereavement office that coordinates the paperwork required after a death and provide the family with information about registration and funeral arrangements.
Bereavement officers provide a friendly, easily accessible interface between the hospital and relatives and can refer to voluntary bereavement support groups
Consent for hospital postmortem may be obtained or coordinated by bereavement officers
If no family comes forward or if they are incapable/unwilling to arrange a funeral, the hospital (usually via the bereavement office) will arrange and pay for a low-cost cremation
Postmortems
The coroner may initiate a postmortem for legal reasons or where no doctor is able to write a certificate—the family cannot veto this
Consented hospital postmortems (at the family's discretion) are useful for education and audit especially in unusual or difficult cases. The rate of hospital postmortems is declining, but careful discussion with relatives (often coordinated by the bereavement services team) increases the likelihood of consent. A limited examination (eg restricted to the torso or one organ) is more acceptable
After the Alder Hey scandal (retention and disposal of organs from children without parental consent; Liverpool, UK, 1990s), the new laws require a separate, explicit consent for retention of tissue for examination/teaching
The registrar
The registrar is responsible for recording all births and deaths
The relatives have to register the death within 5 working days and this usually involves making an appointment
The death must be registered before a funeral can be arranged
If there is an error on the death certificate they can refuse to register the death and will refer the case back to the certifying doctor
The coroner
Coroners are officers appointed by the Council to investigate any sudden or unexplained death. They are independent of both local and central government. The police, a doctor, or the registrar may report a death to the coroner. The registrar must await the outcome of the coroner's enquiries before registering the death, so families should delay making funeral arrangements.
Under UK law the following must be reported to the coroner:
Death occurred in police custody or in prison
No doctor has treated the deceased during the last illness
The attending doctor did not see the patient within 14 days of death
Death occurred during an operation or before recovery from anaesthesia
Death was sudden and unexplained or in suspicious circumstances
Death may be due to an industrial injury or disease, or to accident, violence, neglect or abortion, or to any kind of poisoning (this may include injurious falls and head injuries)
Some coroners also like to be informed when death occurred <24hr after admission to hospital but this is not a legal requirement
Although there is an obligation to report to the coroner deaths in the circumstances listed, the coroner might be happy to issue a ‘Part A’ certificate, which permits the doctor to write a death certificate. Only a minority of deaths that are reported will end up with a coroner's postmortem or an inquest.
Consider discussing:
Cases of pressure sores or severe malnutrition at home (neglect is possible)
Cases of falls where the incident is not fully explained
Postoperative cases
Mesothelioma and occupational disease (compensation may rely on a postmortem)
Have a low threshold for reporting deaths when relatives are unhappy with social care or pre-hospital or hospital care, or are overtly litigious
The coroner's officers can advise you about acceptable causes of death on a certificate but are not medically qualified. A ‘Part A’ certificate records that you have discussed the case with him/her but more commonly informal telephone advice is given—if you feel the case is at all contentious ensure that a ‘Part A’ is issued to protect you.
▸If in doubt, discuss your case with the coroner.
Following the Shipman murders (Dr Harold Shipman was a GP and a serial killer of his patients), the documentation after death and the role of the coroner is likely to be substantially revised by Parliament.
▸The information given here applies to the UK only—local guidance should be sought in other countries.
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