Care at the Very End of Life
Katherine Clark
Clinical Associate Professor
Calvary Mater Newcastle
Hunter New England Health
Contents
• Diagnosing dying
• An approach to caring for the dying
• Practical aspects of care
Diagnosing Dying
• In order to care for a dying person, it is essential to
recognise and diagnose dying;
• This may be a complex process.
• In a hospital setting, where the culture is often focused
on “cure,” continuation of invasive procedures,
investigations, and treatments may be pursued at the
expense of the comfort of the patient.
• There is sometimes a reluctance to make the
diagnosis of dying if any hope of improvement exists
and even more so if no definitive diagnosis to account
for the illness has been made.
Diagnosing dying
Recognising the key signs and symptoms is an important
clinical skill.
The dying phase for cancer patients can sometimes be
precipitous—eg massive haemorrhage—but is usually
preceded by a gradual deterioration in functional status.
In cancer patients, the following signs often herald the
dying phase:
•
•
•
•
Completely bed bound,
Semicomatose,
Only able to take only sips of fluid,
No longer able to take oral medications.
Diagnosing Dying
• This predictability of the dying phase is not always as
clear in other chronic incurable diseases.
• Patients with heart failure highlight some of the
complexities of diagnosing dying.
• Heart failure is the most common single cause of
death in many hospital medical wards and the
palliative care needs of these patients have, until
recently, been largely ignored.
• However, these people, and those with other terminal
illnesses are the focus of national strategies in
Australia.
An approach to caring
for the dying
Mrs PN
• A 90 year old woman with moderate dementia, who
lives in a nursing home.
• Over the last week, she has become unwell with fever,
productive cough, increasing confusion.
• As her GP, you are asked to review her.
• On examination, she semi-comatose, peripherally shut
down with reduced air entry over her right lung with
bronchial breath sounds at the right lung base.
Mrs PN
• You make a clinical diagnosis of pneumonia
and as a result of her background frailty and
this superimposed burden, she is now dying.
• In the past she has clearly expressed her
wishes which are NOT to receive treatment for
an acute illness.
• This is clearly documented in her file.
Barriers to optimal care of a dying person
• The most important element in
diagnosing dying is that the members of
the multi-professional team caring for the
patient agree that the patient is likely to
die soon.
• Disagreement may result in mixed
messages and opposing goals of care
resulting in poor patient management
and confused communication.
Barriers to optimal care of a dying person
• If the patient is thought by the healthcare
team to be in the dying phase (that is,
having only hours or days to live), then
this should be communicated to the
patient and to the relatives/informal
carers.
• This ability to communicate bad news is
another skill that must be practised.
Communicating bad news
• Broadly defined, bad news is any information that
negatively alters a person's expectation about the
present and the future.
• Importantly, news is defined as bad based on the
recipient’s perspective about the information.
• Health care professionals must remember that it will
not always be obvious what people will interpret as
bad news.
• Although all would agree that the diagnosis of a new
cancer would qualify as bad news, to some patients
discovering hypertension could be deeply disturbing.
• Delivering bad news is difficult and at times stressful to
all involved.
Recipient’s experiences?
• Patients and families report some consistent
difficulties, which commonly include:
– Doctor’s use of technical language that the patient
does not understand,
– Discussing bad news in a hallway, waiting room, or
other location that lacks privacy;
– Neglecting to offer social support from clergy or
others;
– Being perceived as lacking sympathy, lacking
information, and being unable to answer questions;
– Neglecting to prepare family members for the
possibility of an autopsy in circumstances in which
one may be required by law.
How does this impact on people
(patients and carers)?
• Anxiety,
• Fear,
• Compliance,
• Bereavement.
Principles for communicating bad
news
• Give accurate and reliable information so
that the person understands any
implications,
• Always ask the person how much
information he or she wants about
prognosis,
• Prepare the person as soon as possible
for the possibility of bad news and impart
it face-to-face.
Mrs PN
• You contact the family, who agree that
she should remain in the nursing home.
• When the family arrive, they are shocked
by the rapid change in her condition,
particularly now she has developed noisy
rattling respirations.
• Her family are concerned she is
“drowning to death”.
Common problems at the end of life
• The most common problems
experienced by people at the end of life
include:
– Noisy respirations,
– Delirium and agitation,
– Breathlessness,
– Pain.
Investigating problems?
• New symptoms in unwell people
normally dictates the need for
investigations.
• However, as life becomes shorter, the
burden of investigations needs to
considered against the benefits of
investigations.
Investigating problems?
• When a new symptom occurs, the following points
must be considered:
– What is the person’s life expectancy?
– Does this new problem change this person’s
outlook?
– What is the most likely cause?
– Can this be modified?
– What can be done to change the behavior of the
symptom, either/or pharmacologically or nonpharmacologically?
Delirium
• Very common at the end of life;
• Characterised by:
– Fluctuating disturbance in consciousness,
– Changes in cognition,
– Evolution of changes over a short period,
– Evidence that this is the result of an
underlying medical condition.
• There are numerous potential causes of
delirium at the end of life.
Delirium
• If prognosis is very short (hours to days), no
further investigations should be undertaken;
• However, if a longer prognosis is anticipated,
all attempts to correct the underlying cause
should be made.
• Whilst investigations are underway,
pharmacological and non-pharmacological
interventions should be initiated.
Delirium
• Pharmacological:
– Commence an antipsychotic, with the most
commonly prescribed medication in this situation
remaining haloperidol.
– Sometimes, a benzodiazepine may also be
necessary.
• Non-pharmacological:
– Quiet environment,
– Familiar voices & possessions,
– Rule out urinary retention or faecal impaction.
Breathlessness
• Dyspnoea is very common at the end of
life.
• This carries a very poor prognosis and
may be a very frightening experience for
people.
• There are numerous potential causes
and the end of life the challenge is again
to consider the reversible causes without
adding a burden of investigations.
Breathlessness
• Regardless of the cause of dyspnoea, at
the end of life, management includes:
– The use of low dose opioids or modifying
the background dose of opioid,
– Addressing anxiety,
– Providing oxygen when a person is proven
to be hypoxic,
– Moving air over the face may help (eg an
open window, a fan).
Noisy respirations
• Common in the final hours of life and as such
are considered a harbinger of death;
• Impact of the secretions on people is
unknown.
• The decision to intervene is often based on
family distress.
• The optimal management depends upon
considering the most likely cause of the
problem.
Noisy respirations
• Non-pharmacological management:
– Re-positioning,
– Gentle suction,
– Reduce parenteral fluids.
• Pharmacological management:
– Hyoscine,
– Atropine,
– (Glycopyrrolate).
Pain
• Pain control is achievable in 80% of patients by
following the World Health Organisation's guidelines
for use of analgesic drugs.
• History and examination are used to assess all likely
causes of pain, both benign and malignant.
• Treatment (usually with an opioid and adjuvant) is
individually tailored, the effect reviewed, and dose
titrated accordingly.
• If a patient is already receiving analgesia then this is
continued through the final stages of life.
• Pain may disturb an unconscious patient since the
original cause of the pain still exists.
Readily available end of life medications
Pain
Morphine 2.5mg sc 4/24
(or other parenteral opioid)
Paracetamol
Breathlessness
Morphine 2.5mg sc 4/24
(or other parenteral opioid)
Hyoscine butylbromide 20mg stat or
80mg via SC infusion noisy
Delirium
Haloperidol 0.5 mg sc daily to BD
Add clonazepam 0.5mg S/L BD if
agitated delirium
Seizures
Clonazepam 0.5 mg S/L stat then 0.5
mg S/L BD
Dry mouth
Regular mouth care
Questions?
Care of the dying
• There is no doubt that eventfully all life
will end in death;
• All doctors and many other health
professionals will at some point have to
provide care for a dying person.
• A knowledgeable approach may improve
family’s and carer’s bereavement.