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To do or not to do?
Mr R Becker Senior Lecturer in Palliative Care
Staffordshire University and Severn Hospice Shropshire
whether a decision to sedate and/or
hydrate reflects an intention to
relieve pain and suffering,
discontinue burdensome or
ineffective treatment, or to cause
The Doctrine of Double Effect
If doing something morally good has a
morally bad side-effect it's ethically
OK to do it - providing the bad sideeffect was not intended. This is true
even if you foresaw that the bad
effect would probably happen.
Other ethical issues of significance
 Benefit
to the patient
 Possible harm caused to the patient
 Respect for patient autonomy and the
right of self determination – i.e. choice
 Respect for the moral integrity of the
health professionals – codes of practise
 Sanctity of life ethic
The challenge of palliative sedation
Confusion and inconsistency in the literature related
to conceptual definitions of the term “terminal
Disagreements over the clinical indications for its
Inconsistency in pharmacological approaches to
A paucity of qualitative research examining the
contextual factors and processes influencing the
attitude and behaviour of health professionals and
family members
Beel et al 2002
A Question of Definition?
In the beginning was “terminal sedation”
Negative association with the word terminal. Palliation
is a positive response to distressing symptomatology
The term does not give a clear indication of what
sedation is all about i.e. the intent
The term suggests that terminal sedation is about
terminating the life of the patient.
Palliative Sedation
“the intentional administration of sedative
drugs in dosages and combinations
required to reduce the consciousness of
a terminal patient as much as necessary
to adequately relieve one or more
refractory symptoms”
Broeckaert B 2002
Clinical Indicators for Palliative
Unendurable and refractory symptoms?
 Uncontrolled
physical pain
 Respiratory distress
 Delirium
 Nausea and vomiting
 Terminal agitation and restlessness
 Psychological and/or spiritual distress
Ventafridda et al 1990, Cherny & Portenoy 1994, Chater et al 1998)
The incidence of refractory symptoms
 16%
hospice patients (Fainsinger et al 1991)
 26%
hospital patients (Stone et al 1997)
 36%
in the last 48 hrs (Lichter & Hunt 1990)
 48%
hospice patients (Morita 1996)
 50%
hospital patients (Braun et al 2000)
 52.5%
unendurable symptoms (Ventafridda 1990)
Limitations of the current research into
palliative sedation
 Most
studies appear to be either surveys of
existing practise or empirical observations of
 We
lack in understanding of the context of
sedation and the human interactions that
influence the decision to sedate.
 Qualitative
methodology : grounded theory,
clinical ethnography
The drugs most commonly used for
palliative sedation
– Midazolam & Lorazepam
 Neuroleptics – Haloperidol
 Barbiturates – Phenobarbitol
 Opioids alone should never be used for
 Opioids where px should be continued
alongside the sedative drugs.
 Benzodiazepines
Mean survival of patients after starting
Porta Sales et al (1999)
Porta Sales (2001)
Fainsinger et al (2000)
3.2 days
2.4 days
2.4 days
Other studies
Fainsinger (1998) 4hrs – 12 days
Menten (2000)
1 – 18 days
Artificial hydration: The Current Issues
The literature currently demonstrates considerable differences
in clinical practice regarding the use of artificial hydration in dying
Varied opinions: a crucial part of the management strategy, or
unnecessary burden
There is only a small body of research available – much of
which is now quite old, and clinical experience appears to provide
the basis for most current practice
There appears to be no consistency in the amounts prescribed
or the rates and efficiency of delivery
A Selection of Viewpoints:
Dehydration can be seen as a normal part of the dying
process, patients who are dying of cancer usually give up
eating and then drinking, they become too weak to even take
fluids (Fox 1996)
In the same way that hunger is not a feature of
anorexia/cachexia, thirst is not a symptom associated with
decreasing fluid intake in those close to death (Dunlop et al
Most patients failing to drink in the terminal phase of their
illness, not given artificial hydration, do not suffer the normal
symptoms of dehydration (Dunphy et al 1995)
The symptoms of natural dehydration close to
death include:
Dry mouth
Cognitive Impairment
Circulatory collapse
Renal failure
Potential Burdens of Artificial Hydration close to
Can lead to fluid retention and overload leading to the
development of peripheral or pulmonary oedema
Can result in dyspnoea
Cannula in the arm can be uncomfortable
Risk of infection or phlebitis
Changes in body image
Can give confusing messages to the family – false hope of
cure and extended life
May be a physical barrier between the patient and family
Pain reduction in natural
dehydration at the end of life
A reduction in oedema around
tumours leads to decreased pain from
nerve compression (Zerwekh 1997)
The increase in ketones caused by
reduced calorific intake, causes a loss
of sensation (Printz 1989)
Research Into Artificial Hydration
Marin et al (1989) Surveyed 448 doctors and found that
53% would administer IV fluids to a comatose patient with
widespread malignant metastases. 83% would resite the
cannula as required and 26% would insert a central venous
line if no other route were available. “patient comfort” was
the reason given.
Collaud et al (1991) Surveyed 397 doctors and found that
28% would use artificial hydration in conscious, but dying
patients and 44% in unconscious ones. When asked to
assess the discomfort of dehydration 42% felt that dying
patients suffer significantly and 33% that patients scarcely
House (1992) Compared views of hospice nurses and
doctors with general hospital staff and found that hospice
staff did not advocate artificial hydration whereas 43% of
hospital nurses felt that the patient suffered if hydration
was not maintained in the dying.
Malone (1995) Surveyed doctors in an acute hospital
setting and found that 75% would use IV fluids with the
dying and 40% would consider a central line if access was
Harvath et al (2004) Studied attitudes of hospice nurses &
social workers to a patients voluntary refusal of food &
fluids. Results indicated a positive perception by staff for
this choice by patients.
UK National Council for Palliative Care Guidelines
(1997 updated 2005)
A blanket policy of artificial hydration or no artificial hydration is
ethically indefensible.
Towards death a persons desire for food and drink lessens.
Thirst or dry mouth in the terminally ill may be caused by
medication…..Good mouth care is essential
Good palliative care includes the option of artificial hydration
where there is a correctable cause….
Assessment should be made on a daily basis re - benefits and
Health professionals must not subordinate the interests of
patients to the wishes of distressed relatives…..
Key Questions and Care Strategies
Engage in early discussion with the patient and family to
determine the patients wishes
Establish whether the patient has an
advance directive
Reassure the patient and family that at all times the priority is
the comfort and support of the patient.
 Be tactfully resistant to sacrificing the interests of the patient
to the emotional distress of the relatives
Always present the facts carefully and sensitively - understand
the context and dynamics around the bedside
Key Questions and Care Strategies
Remember - thirst in the conscious patient should
always be actively addressed
Does the patient appear to “feel better” as a result of
the infusion? Is his/her well being/ alertness
What are the psychosocial effects? i.e. is the infusion
interfering with family interactions
Ensure pain and symptom relief is adequate and
assessed regularly
Key Questions and Care Strategies
Essential comfort measures : Regular mouth care, offer
ice cubes and sips of water if tolerated. Provide cream for
lips to prevent cracking, pressure area care, keep the
patient clean and dry at all times
Reassure the family that sedation is a valid means of
symptom control where no other measures are possible to
relieve distress
Reassure the family that stopping IV fluids is not
stopping care
Thank you for listening.
Email: [email protected]