The IAHPC Manual of Palliative Care
2nd Edition

II. Ethical Issues

Table of Contents

CONTENTS

PRINCIPLES OF MEDICAL ETHICS

COMMUNICATION AND DISCLOSURE

WITHHOLDING AND WITHDRAWING TREATMENTS

ARTIFICIAL NUTRITION

ARTIFICIAL HYDRATION

EUTHANASIA AND PHYSICIAN-ASSISTED SUICIDE

ETHICS IN RESEARCH

JUSTICE AND RESOURCE ALLOCATION

PRINCIPLES OF MEDICAL ETHICS

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
• they apply to all medical care but assume greater importance when caring for people at the end of life.
• unlike cultural issues which differ from country to country, the same ethical principles apply everywhere

There are four main principles of medical ethics

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

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
  • 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

COMMUNICATION AND DISCLOSURE

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
• 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
• 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
• honest

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 traditionally patients are 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

WITHHOLDING OR WITHDRAWING TREATMENTS

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 terminally patients receive antibiotics for chest infection?

• depends on many factors, including
  • the patients' nearness to death
  • the wishes of the patients and their families
  • the expected benefits from the patients' 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

ARTIFICIAL NUTRITION

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

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 associated with
    • central venous catheterisation
    • infections
    • expense
  • enteral nutrition is 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

"you have to do something!" is never a justification for artificial nutrition

ARTIFICIAL HYDRATION

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

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 randomised 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 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

"you have to do something!" is never a justification for artificial hydration

EUTHANASIA AND PHYSICIAN ASSISTED SUICIDE

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 distinguished from euthanasia

Palliative Care

• recognises human suffering and seeks to relieve it
  • but it does not accept that euthanasia is ever the answer
• recognises 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
• 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

Euthanasia may be requested or advocated for various reasons

• unrelieved pain and physical symptoms
  • which should occur infrequently given optimal interprofessional (or multiprofessional) palliative care
  • terminal sedation may be considered for patients with pain and physical symptoms that are refractory to optimal palliative care; this does not constitute euthanasia or physician-assisted suicide
• severe anxiety and depression
  • which should be controlled given optimal interprofessional (or multiprofessional) palliative care
• intolerable suffering, existential distress
• which should be controlled given optimal interprofessional (or 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

Legalisation of euthanasia is associated with risks

• voluntary euthanasia leads to non-voluntary euthanasia
  • in Holland, many patients received euthanasia without request, never mind consent
• euthanasia for the terminally ill leads to euthanasia for the non-terminally ill
  • as documented in the Dutch reports
• 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
• it is open to abuse, by patients, even by relatives, and certainly by doctors

There is no place for euthanasia in a caring society that provides palliative care services

Further articles concerning euthanasia are to be found on the Ethics Page of the IAHPC website

ETHICS IN RESEARCH

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
• No, if it is a phase 1 trial of an experimental anticancer agent and
  • 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 AND RESOURCE ALLOCATION

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 in advanced stages of the disease, 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

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