Ethics are the principles that should guide doctors and other health care professionals in their work and decision-making
they are not laws but guiding principles; some things may be legal but are not ethical.
they apply to all medical care but assume greater importance when caring for people at the end of life.
unlike cultural issues that differ from country to country, the same ethical principles apply everywhere.
Beneficence — is to produce benefit, to do good, to always act in the best interests of the patient
whatever is done or said must be for the patient’s good
includes being honest with patients, which in nearly all circumstances will be of benefit to the patients
patients should not be subjected to unnecessary investigations
patients should not be subjected to unnecessary or futile therapies
applies not only to physical good but also to psychological, social and existential well-being
must be distinguished from paternalism (‘doctor knows best’)
Non-maleficence — is to minimise or do no harm
whatever is done or said must not harm the patient, physically or psychologically
includes being honest with patients; lying to patients or telling only part of the truth will very probably cause harm
for every intervention, the potential benefits must be weighed against possible adverse effects
treatments should not be prescribed unless there is a strong chance they will help the patient and only a small chance of unpleasant adverse effects. In palliative care, there is no place for the prescription of placebo.
prescribing should aim to produce the minimum of adverse effects.
Autonomy — acknowledges patients’ rights to self-determination, without prejudice
treatments can only be given with patients’ informed consent
it is the patients’ right to decide what treatments they do or do not wish to have
patients have a right to be fully informed in order to make decisions.
heath care professionals have an obligation to provide honest and complete information when it is requested. Opportunities must be given for them to ask questions and show that they understand what is being suggested to them
applies not only to medical treatments but also to matters such as where they receive care, and who shall provide their care
Justice — refers to the equitable allocation of health care resources according to need
not according to wealth, class, creed or colour
unfortunately, observation of health care around the world shows much lack of justice
many treatments are only available to the rich, or those with influence and power, or those articulate enough to ask for something better
in some countries morphine is available only if the patient can afford it
in some countries even palliative care has to be paid for and lack of money may mean dying in pain, possibly alone, without any dignity
In Clinical Practice
situations arise where there is apparent conflict between different principles
in assessing which principle is the more important
give priority to what is in the best interests of the individual patient
weigh the possible benefits against the potential adverse effects for each proposed therapy
Patients have a right to an honest and full explanation of their situation
patients should be told as much or as little as they want to know
patients have a right to decline information if they so wish. (There often comes a time in palliative care when a patient will say that they trust their professional carers and do not want more information or having to make difficult decisions).
without information about the disease and prognosis, patients
cannot participate in their own treatment planning
cannot give informed consent to treatment
cannot make suitable plans for themselves and their families
Communication should be with the patient, unless
the patient is not competent
they have delegated the responsibility to a family member, something that should be confirmed or documented as a Power of Attorney.
religious or cultural custom requires that the male head of the family is told
Communication about sensitive matters should be
carried out in an understanding, sensitive and unhurried manner
given in a way that can be understood
performed honestly
see Communication with Patients
Telling patients nothing or lying to them is very likely to cause harm
there is evidence from many different countries and cultures that terminally ill patients fear the unknown more than they fear the known and will suffer less, both physically and psychologically, when given the information they want
even in countries where patients are traditionally not told the diagnosis and are thought not to know it, many patients have a good idea of the diagnosis and its prognosis even if they have not been explicitly informed about it
will lead to loss of trust when the patient is informed of, or deduces the true situation
The goal of palliative care is to maintain the quality of life while neither hastening nor postponing death
death is the natural end of life
there is no ethic, in any culture or religion, which say that a terminally ill patient must be kept alive by any means
what matters is the quality of life left to the patient, not the time which is left to them
palliative care must never become an exercise in prolonging life
Whether it is appropriate to offer or to withhold or withdraw a particular therapy depends on the balance between the possible benefits and the potential risks of the treatment, i.e. what is in the patient’s best interests
it will depend on individual clinical circumstances
it is often difficult and complex
futile therapy, with no chance of benefit (“You have to do something!”), can never be justified
Example 1 Should a terminally patient receive antibiotics for chest infection?
depends on many factors, including
the patient’s nearness to death
the wishes of the patient and their family
the expected benefits from the patient’s point of view
if the antibiotics
will merely prolong the dying process, they are probably best withheld
will control distressing symptoms unresponsive to other measures, such as pyrexia or delirium, they may be of benefit
Example 2 How should renal failure caused by ureteric obstruction due to advanced cancer be managed?
if the patient was terminally ill because of cancer before renal failure supervened, active therapy is probably inappropriate
if the patient was previously relatively well and has a reasonable life expectancy except for the effects of renal failure, consideration for stenting or nephrostomy insertion is appropriate
The question is whether or not a particular treatment or intervention will restore or enhance the quality of life for a particular patient
if the answer is yes, and it can be justified on the best clinical grounds, then it is ethically right to do it
if not, it should not be done
in developing countries, cost may be a major additional consideration
‘You have to do something!’ is never a justification for artificial nutrition
Weight loss and wasting in advanced cancer
is nearly always due to the cachexia syndrome
is caused by changes to metabolism secondary to the cancer
is never responsive to enteral or parenteral nutrition
i.e. they are futile
parenteral nutrition is also associated with
central venous catheterization
infections
expense
enteral nutrition is also associated with
abdominal cramps
diarrhoea
feeding tubes
is occasionally due to malnutrition and starvation
patients with upper gastrointestinal obstruction, not terminally ill from their cancer warrant feeding by a nasogastric tube or gastrostomy
patients receiving therapy that will prevent them eating for 2 weeks or more warrant consideration for parenteral feeding
for patients with persistent or recurrent bowel obstruction, whether parenteral nutrition is warranted depends on individual clinical circumstances
The question is whether or not a particular treatment or intervention will restore or enhance the quality of life for a particular patient
if the answer is yes, and it can be justified on the best clinical grounds, then it is ethically right to do it
if not, it should not be done
‘You have to do something!’ is never a justification for artificial hydration
Effects of dehydration in terminally ill patients
dry mouth
but this can be well palliated topically
thirst
although dying patients do not complain of thirst
diminished conscious state
several reports and a single randomized controlled trial showed no correlation between hydration and cognition in these patients
Possible benefits of dehydration in terminally ill patients
less urine output means less movement and less incontinence
less pulmonary secretions reduce dyspnoea and terminal congestion
less gastrointestinal secretions will lessen nausea and diarrhoea
less problems with oedema and effusions
Possible disadvantages of artificial hydration in terminally ill patients
may have the opposite effects to the benefits listed above and worsen the patient’s situation
may give an ambiguous signal or false hope to the patient or family
drips act as a physical barrier between patient and family
Dehydration in patients not terminally ill
causes thirst, dry mouth and postural hypotension
patients unable to take or retain adequate fluids warrant parenteral hydration
Euthanasia is a deliberate intervention undertaken with the express intention of ending a life so as to relieve intractable suffering
if performed at the person’s request or with their consent, it is voluntary
otherwise it is non-voluntary
Physician-assisted suicide: the physician provides the knowledge and means necessary, but the act is completed by the patient
from the physician’s standpoint, it is a deliberate act with the express intention of ending life and should not be ethically distinguished from euthanasia
Palliative Care
recognizes human suffering and seeks to relieve it
but it does not accept that euthanasia is ever the answer
recognizes that a request for euthanasia is a plea for better care
Withholding or withdrawal of medical treatment
terminally ill patients should not be subjected to futile therapies
there is no requirement or justification to sustain life at all costs
a doctor has no right to prescribe a prolonged or lingering death
withholding or withdrawal of futile treatment from the terminally ill does not shorten life or hasten death
it does not artificially prolong life
withholding or withdrawal of futile therapy from the terminally ill is not euthanasia
the intention is to allow death to occur naturally, not to deliberately terminate life
‘Double effects’
medications given for the relief of distressing pain or symptoms may, on occasions, hasten the moment of death, the so-called ‘double effect’
there is no evidence that good palliative medicine shortens life
effective symptom control is just as likely to extend as shorten life
studies indicate that the appropriate use of sedatives and opioids at the end of life is not associated with life-shortening
providing that appropriate drugs are given for appropriate medical reasons and in appropriate doses, this is not euthanasia
the hastening of death may or may not be foreseen, but it is never intended
Palliative sedation
Palliative sedation is the use of sedating medications at the end of life to relieve refractory and intolerable symptoms (e.g. pain, dyspnoea, agitated delirium) after all other measures have failed.
provided it is performed with the informed consent of the patient or surrogate decision-maker, employing appropriate drugs in appropriate doses and carefully titrated, it is ethically sound and is not euthanasia.
the possibility of a ‘double effect’ exists, although studies of patients treated with palliative sedation in this manner do not demonstrate lifeshortening.
the practice of ‘terminal sedation’ (with the intention of keeping a patient unconscious until they die) and palliative sedation for ‘existential distress’, as reported from the Netherlands, probably constitute euthanasia.
Euthanasia may be requested or advocated for various reasons
unrelieved pain and physical symptoms (or fear of)
which should occur infrequently given optimal multiprofessional palliative care
terminal sedation may be considered for patients with pain or other symptoms that are refractory to optimal palliative care; this does not constitute euthanasia
severe anxiety and depression
which should be controlled given optimal multiprofessional palliative care
intolerable suffering, existential distress
which should be controlled given optimal multiprofessional palliative care
carer fatigue
is preventable
autonomy and self determination
in modern society, the existence of a right to request and receive euthanasia is controversial—every ‘right’ is balanced by a responsibility
iatrogenic - the ‘nothing more can be done’ syndrome
would not occur if patients were referred to a palliative care service
requires professional education
Uncontrolled suffering in the terminally ill should be considered a medical emergency and not an indication for euthanasia
Legalization of euthanasia is associated with risks
voluntary euthanasia leads to non-voluntary euthanasia
reports from the Netherlands indicate that as many as a thousand patients a year are subjected to euthanasia without request, never mind consent
euthanasia for the terminally ill leads to euthanasia for those not terminally ill
e.g. the Dutch reports of euthanasia for men with early AIDS and life expectancy measured in years
euthanasia for the terminally ill leads to euthanasia for persons with potentially treatable conditions like depression
as documented in the Dutch and Australian reports
the vulnerable will experience pressure to request euthanasia
the aged, the sick, the disabled and those who feel a burden
as reported from Holland
There is no place for euthanasia in a caring society that provides palliative care services
Should terminally ill patients be recruited into clinical trials?
Yes, if the trial objective is to improve the quality of life and
there is possible benefit
the potential for harm is low
the patient is fully informed of all that is involved
No, if it is a phase 1 trial of an experimental anticancer agent or other intervention for which
the chance of benefit is very small
the potential for harm is significant
Informed consent for a clinical trial must include understanding of
the purpose of the research
any foreseeable risks
any possible benefits
any appropriate alternative procedures or treatments
confidentiality of records
participation being voluntary
ability to withdraw at any time
that continuing care is not dependent on participation in the trial
Palliative care patients are particularly vulnerable and susceptible to proposals to enrol in clinical trials
they may be desperate for treatment options
they may be physically ill and exhausted
they may be depressed
they may be cognitively impaired
they may feel obliged to participate, to show their appreciation to the doctors caring for them
There is an ethical responsibility to protect palliative care patients from studies that are not in their best interests whilst preserving the informed patients’ freedom of choice
experience suggests that many terminally ill patients enjoy collaborating in ventures which might help others, feeling that they are still useful members of society
Justice
refers to the equitable allocation of health care resources according to need
not according to wealth, class, creed or colour
all patients with active, progressive, far-advanced disease and a short life expectancy, for whom the focus of care is the relief and prevention of suffering and the quality of life, should have access to palliative care
Resource Allocation
some would argue that cure medicine should have priority because it aims to maintain life which may be economically and socially useful and productive
others would argue that palliative care is more important because a society which is not concerned about its incurably ill is not a good society
in many developing countries, the majority of patients are diagnosed with advanced stage disease and/or curative treatments are not available
in some developing countries, expensive chemotherapy drugs and analgesic medications are available, but simple (and affordable) morphine mixture and injections are not
Palliative Care must be prepared
to demonstrate the effectiveness of interventions on quality of life and symptom control and not just on patient satisfaction
to show cost-effectiveness or at least cost parity with alternative forms of care
to demonstrate not only the efficacy but also the efficiency of what it does
Source
The IAHPC Manual of Palliative Care 3rd Edition Published by IAHPC Press ISBN 978-0-9834597-6-7 2013