Death is the only certainty in life.
End of Life Care in the Emergency Department is a recently coined phrase, but the
concept predates all of those in this room. And most people who contemplate the end of
their own life fear certain aspects of it - particularly the risk of pain, or indignity.
Whereas it was common up to 50 years ago for people in this country to die at home, it is
increasingly uncommon. 48% of of deaths occur in acute hospitals, 20% in long term care
facilities, 25% at home and only 4% in hospice care. When expected, arrangements may
be in place to deal with the concerns of the dying person, and their relatives.
When unexpected, or precipitate, such plans may may be thwarted, or simply not yet in
place. Interestingly, surveys have shown that most medical doctors would opt to die at
home, if at all feasible.
An audit study from 4 years ago showed that 84% of patients dying in hospital had
accessed the hospital via the Emergency Department, with 24% of the deaths being
unexpected.
End of Life Care in the Emergency Department is opportunistic, in that it depends on many
factors coming together at the one time. It relies on the determination of the staff to
ensure the best possible experience for their patients and the patient’s relatives or friends.
For it does require determination to deliver quality care in what is perceived by many
outsiders as a chaotic setting.
Every dying person has physical, psychological, social and spiritual needs. And it is
relatively uncommon for one person to be able to supply support for each and every one of
these needs. Instead, a team effort is essential. But that team must be prepared and, like
an elite squad, practiced at their task.
What are the barriers to a “high quality” death in the Emergency Department?
They include the physical setting; often overcrowded, noisy, and with high intensity lighting
24 hours a day.
It is psychologically extremely difficult to be plucked from one’s bed at home, gasping for
breath, and be brought by ambulance, careening through the streets with sirens blaring, to
a noisy environment, where the bustle of life-saving measures applied to one person may
interfere with the peace and quiet required by a dying woman contemplating her last few
hours or minutes on this earth.
There is an understandable difficulty ensuring caring time for a person known to be dying,
whose life cannot be prolonged by any means within the power of nursing and medical
staff. Whilst concerned for these people, the pressure of other patients’ needs can be very
distracting, running the risk of a lonely death within a crowded room.
And what of the tensions within a family, knowing their loved one has been injured in a
traffic collision, or in a murderous assault, and who now lies sedated, ventilated and
paralysed, unable to communicate their needs, and with no prospects for survival?
All deaths in the Emergency Department, or within 24 hours of admission, must be
reported to the Coroner, with a very high proportion having post-mortem autopsies, as they
will not otherwise fulfill the legal requirements for death certification. This places a further
tension on the relations between families and staff, which may lead to difficulties.
What can be done to optimise End of Life Care in Emergency Departments?
The first thing is to believe that it can be improved, to examine each element carefully and
to deal with every deficiency in a constructive fashion.
The environment of the Emergency Department is designed for large-volume patient care,
in a physically-confined area. To reduce the inevitable noise, bustle and constant light,
requires a separate area that can be used to support the patient and their family, during
the process of dying, and after death.
Very few Emergency Departments in this country have adequate physical facilities for
death and bereavement, although these facilities are, in fact, cheaper to provide than
acute clinical space. The necessary investment is small, relative to the overall
departmental budget, but the potential good for the lives of those who have been bereaved
is enormous. And the possibility remains that good bereavement care will lead to shorter,
less intense, grief responses and lower levels of psychological ill-health afterwards, with
an earlier return to productive life for those remaining.
This quiet place must have auditory and visual separation from the main business of the
Emergency Department, whilst close enough to the main clinical area to allow ready
access, with staff able to move to-and-fro without difficulty. It must be decorated in calm
and soothing colours and fabrics, whilst keeping in mind the infection control elements
required in a clinical environment.
Access to refreshments and to external communications for family is vital. Nowadays, this
means ensuring adequate mobile phone signal strength, which can be a difficulty in areas
with radiation protection built-in to the walls.
Staff, whether medical, nursing, clinical or clerical support personnel, must all be trained in
the ways they can support dying people and their families. This equally means they (the
staff) must face their own inevitable death, at least in broad philosophical terms.
Several departments, my own included, now run End of Life Care seminars for their staff,
as a multi-disciplinary effort to enhance the response to dying patients and bereaved
families. We also teach Breaking Bad news and End of Life Care to undergraduate
medical students in Trinity College.
There must be a willingness to engage with the physical, emotional and spiritual needs of
patients, whatever the religious beliefs of the staff. This is increasingly important in an
Ireland which, 50 years ago had mainly Roman Catholics and Protestant denominations,
with a smattering of Jewish people, but which now has many other different religious
groups, ranging from Muslim, thorough Animist, Buddhist, Coptic, Daoist, Eastern
Orthodox, Hindu, Sikh and others.
Unless the inevitability of death is recognised, there may be a reluctance to use adequate
doses of powerful painkillers, despite clear evidence of need. However, access to
adequate pain relief is a “must” for those who have pain. Once the decision is made, the
the provision of relief can be complex, depending on the specific needs of the patient.
Methods to enhance this include the use of technology, such as patient-controlled
analgesic pumps, or trans-cutaneous pain relief, and the use of personnel, such as paincontrol, or palliative-care, specialists. The latter are rarely available on a 24-hour basis, but
can provide tuition for those who are, such as medical and nursing staff in Emergency
Departments, who can then use the technology as required.
Furthermore, spiritual support can reduce significantly the expressed need for pain relief.
This can be supplied by pastoral professionals or, to a certain extent, by appropriately
prepared Emergency Department staff.
All these issues might be dealt with better if there was a more open and structured
approach to End-of-Life Care planning at personal and family level.
If a person is discharged from hospital to home, with a known terminal illness, there seems
to be a reluctance to engage with them and their family to understand the next step in the
process. The process of dying is now unfamiliar to most Irish people, as death now occurs
predominantly in healthcare facilities.
Delirium in the final stages Is much more distressing for the observers than for the
delirious, dying individual. This often leads to a panic situation when the patient eventually
deteriorates and the family, or friends, lose control and dial the emergency number for the
ambulance service.
Once that behemoth is unleashed, the result is predictable - the patient will be brought to
the nearest Emergency Department, usually in extremis. They will then die in the
Emergency Department, or during the journey.
In cases where the patient has already suffered a cardiac arrest, there is a natural
reluctance on the part of pre-hospital emergency care providers (ambulance personnel) to
pronounce death in the home, which leads to ongoing resuscitative efforts and
pronouncement of death in the Emergency Department. Some of this is explained by a
wish to spare the family the aftermath of dealing with the mortal remains in their home, a
process now foreign to most people.
That then leaves the Emergency Department team to deal with the process of informing
relatives and dealing with their grief, and with the logistic difficulties of identification, and
referral to the Coroner. Although the Pre-Hospital Emergency Care Council has developed
a Clinical Practice Guideline to reduce this problem, it is likely to remain an issue of
concern into the medium-term future.
An increasing concern for Emergency Medicine practitioners is the apparent reluctance to
allow frail elderly men or women die peacefully in nursing homes.
Hypostatic pneumonia, which leads to delirium and death over a period of a few days used
be termed “the old man’s friend”. Once secretions were dealt with, the patient turned
regularly to reduce discomfort and pain prevented by the use of “the Brompton Cocktail”,
the patient would slip away quietly, with their relatives and friends by the bedside. This no
longer occurs.
A similar issue also affects demented elderly patients who fall in nursing homes, or who
develop urinary tract infections and sepsis. Our perception of underlying cause is the risk
of an adverse comment from the coroner, or worse still, from a HIQA investigation into
increasing numbers of deaths in nursing homes. The fallout from Lees Cross has had both
positive and negative effects in this regard, in my view.
What can the Oireachtas Committee do?
Probably simply encourage Health Policy that supports good End of Life Care, including
early bereavement care, within Emergency Departments. Ensuring that it is firmly on the
agenda for healthcare planning is critical to developing a response from planners,
managers and clinicians that will lead to a greater, more positive, societal impact.
It behoves us all to consider how and where we would wish to die and to plan for “a good
death”, on a personal basis. Once such a plan is devised, it should be shared with others,
such as the next of kin and the family doctor, with clarity achieved on the wishes of the
person involved.
Using the “Think Ahead” template developed by the Forum on the End of Life and
supported by the Irish Hospice Foundation is a readily accessible way to deal with this
issue.
It is important to ensure access to this personal plan on a 24/7 basis, ideally in a central
on-line register, to ensure that appropriate levels of care and comfort can be provided,
consistent with the wishes of the patient and their current clinical status. Ideally, every
competent person entering a nursing home for long-term, end-of -life care, should be
provided with encouragement and support to fill in this template.
The Assisted Decision-Making (Capacity) Bill 2013 may have a role to play in ensuring that
the loss of ability to communicate, or to make further decisions, does not lead to a situation
where an incapacitated person’s wishes are nullified by external pressures, or by
uncertainty as to their desires.
A peaceful, timely death at home, or in a nursing home, should be seen as the norm,
rather than an aberration and a failure of the health care system.
Death in hospital, particularly the Emergency Department will remain an everyday reality,
but careful planning, sensible use of existing resources and the provision of low-cost, lowtech environmental improvements should make it a much more acceptable process for
those dying and for their families. Death in th eEmergency Department can be made
peaceful. It only needs willing hearts.