Quality of life (QOL) is the general well-being
of individuals and societies, outlining negative and positive features
of life. It observes life satisfaction, including everything from
physical health, family, education, employment, wealth, safety, security
to freedom, religious beliefs, and the environment. QOL has a wide range of contexts, including the fields of international development, healthcare, politics and employment. It is important not to mix up the concept of QOL with a more recent growing area of health related QOL (HRQOL). An assessment of HRQOL is effectively an evaluation of QOL and its relationship with health.
Quality of life should not be confused with the concept of standard of living, which is based primarily on income.
Overview
Standard
indicators of the quality of life include not only wealth and
employment but also the built environment, physical and mental health,
education, recreation and leisure time, and social belonging. According to the World Health Organization (WHO), quality of life is
defined as “the individual’s perception of their position in life in the
context of the culture and value systems in which they live and in
relation to their goals.” In comparison to WHO’s definitions, the
Wang-Baker Faces scale defines quality of life as “life quality (in this
case, physical pain) at a precise moment in time.”
While Quality of Life (QOL) has
long been an explicit or implicit policy goal, adequate definition and
measurement have been elusive. Diverse "objective" and "subjective"
indicators across a range of disciplines and scales, and recent work on subjective well-being (SWB) surveys and the psychology of happiness have spurred renewed interest.
One approach, called engaged theory, outlined in the journal of Applied Research in the Quality of Life, posits four domains in assessing quality of life: ecology, economics, politics and culture. In the domain of culture, for example, it includes the following subdomains of quality of life:
Belief and ideas
Creativity and recreation
Enquiry and learning
Gender and generations
Identity and engagement
Memory and projection
Wellbeing and health
Also frequently related are concepts such as freedom, human rights, and happiness.
However, since happiness is subjective and difficult to measure, other
measures are generally given priority. It has also been shown that
happiness, as much as it can be measured, does not necessarily increase
correspondingly with the comfort that results from increasing income. As
a result, standard of living should not be taken to be a measure of
happiness. Also sometimes considered related is the concept of human security, though the latter may be considered at a more basic level and for all people.
Quantitative measurement
Unlike per capita GDP or standard of living,
both of which can be measured in financial terms, it is harder to make
objective or long-term measurements of the quality of life experienced
by nations or other groups of people. Researchers have begun in recent
times to distinguish two aspects of personal well-being: Emotional well-being,
in which respondents are asked about the quality of their everyday
emotional experiences—the frequency and intensity of their experiences
of, for example, joy, stress, sadness, anger, and affection— and life evaluation, in which respondents are asked to think about their life in general and evaluate it against a scale.
Such and other systems and scales of measurement have been in use for
some time. Research has attempted to examine the relationship between
quality of life and productivity.
There are many different methods of measuring quality of life in terms
of health care, wealth and materialistic goods. However, it is much more
difficult to measure meaningful
expression of one's desires. One way to do so is to evaluate the scope
of how individuals have fulfilled their own ideals. Quality of life can
simply mean happiness,
the subjective state of mind. By using that mentality, citizens of a
developing country appreciate more since they are content with the basic
necessities of health care, education and child protection.
Human Development Index
Perhaps the most commonly used international measure of development is the Human Development Index
(HDI), which combines measures of life expectancy, education, and
standard of living, in an attempt to quantify the options available to
individuals within a given society. The HDI is used by the United Nations Development Programme in their Human Development Report.
World Happiness Report
The World Happiness Report is a landmark survey on the state of
global happiness. It ranks 156 countries by their happiness levels,
reflecting growing global interest in using happiness and substantial
well-being as an indicator of the quality of human development. Its
growing purpose has allowed governments, communities and organizations
to use appropriate data to record happiness in order to enable policies
to provide better lives. The reports review the state of happiness in
the world today and show how the science of happiness explains personal
and national variations in happiness. Also developed by the United Nations
and published recently along with the HDI, this report combines both
objective and subjective measures to rank countries by happiness, which
is deemed as the ultimate outcome of a high quality of life. It uses
surveys from Gallup,
real GDP per capita, healthy life expectancy, having someone to count
on, perceived freedom to make life choices, freedom from corruption, and
generosity to derive the final score. Happiness is already recognised
as an important concept in global public policy. The World Happiness
Report indicates that some regions have in recent years have been
experiencing progressive inequality of happiness. Without life, there is
no happiness to be realised.
Other measures
The Physical Quality of Life Index
(PQLI) is a measure developed by sociologist Morris David Morris in the
1970s, based on basic literacy, infant mortality, and life expectancy.
Although not as complex as other measures, and now essentially replaced
by the Human Development Index, the PQLI is notable for Morris's
attempt to show a "less fatalistic pessimistic picture" by focusing on
three areas where global quality of life was generally improving at the
time and ignoring gross national product and other possible indicators that were not improving.
The Happy Planet Index,
introduced in 2006, is unique among quality of life measures in that,
in addition to standard determinants of well-being, it uses each
country's ecological footprint
as an indicator. As a result, European and North American nations do
not dominate this measure. The 2012 list is instead topped by Costa Rica, Vietnam and Colombia.
Gallup researchers trying to find the world's happiest countries found Denmark to be at the top of the list. uSwitch publishes an annual quality of life index for European countries. France has topped the list for the last three years.
A 2010 study by two Princeton University professors looked at 1,000 randomly selected U.S. residents over an extended period. It concludes that their life evaluations
– that is, their considered evaluations of their life against a stated
scale of one to ten – rise steadily with income. On the other hand,
their reported quality of emotional daily experiences (their reported experiences of joy, affection, stress, sadness, or anger)
levels off after a certain income level (approximately $75,000 per
year); income above $75,000 does not lead to more experiences of
happiness nor to further relief of unhappiness or stress. Below this
income level, respondents reported decreasing happiness and increasing
sadness and stress, implying the pain of life’s misfortunes, including disease, divorce, and being alone, is exacerbated by poverty.
Gross national happiness and other subjective measures of happiness are being used by the governments of Bhutan and the United Kingdom. The World Happiness report, issued by Columbia University is a meta-analysis of happiness globally and provides an overview of countries and grassroots activists using GNH. The OECD issued a guide for the use of subjective well-being metrics in 2013. In the U.S., cities and communities are using a GNH metric at a grassroots level.
The Social Progress Index
measures the extent to which countries provide for the social and
environmental needs of their citizens. Fifty-two indicators in the areas
of basic human needs, foundations of wellbeing, and opportunity show
the relative performance of nations. The index uses outcome measures
when there is sufficient data available or the closest possible proxies.
Day-Reconstruction Method was another way of measuring happiness,
in which researchers asked their subjects to recall various things they
did on the previous day and describe their mood during each activity.
Being simple and approachable, this method required memory and the
experiments have confirmed that the answers that people give are similar
to those who repeatedly recalled each subject. The method eventually
declined as it called for more effort and thoughtful responses, which
often included interpretations and outcomes that do not occur to people
who are asked to record every action in their daily lives.
Livability
The term quality of life
is also used by politicians and economists to measure the livability of
a given city or nation. Two widely known measures of livability are
the Economist Intelligence Unit'sWhere-to-be-born Index and Mercer's Quality of Living Reports. These two measures calculate the livability of countries and cities around the world, respectively, through a combination of subjective
life-satisfaction surveys and objective determinants of quality of life
such as divorce rates, safety, and infrastructure. Such measures relate
more broadly to the population of a city, state, or country, not to
individual quality of life. Livability has a long history and tradition
in urban design, and neighborhoods design standards such as LEED-ND are often used in an attempt to influence livability.
Crimes
Some crimes against property (e.g., graffiti and vandalism) and some "victimless crimes" have been referred to as "quality-of-life crimes." American sociologistJames Q. Wilson encapsulated this argument as the Broken Window Theory, which asserts that relatively minor problems left unattended (such as litter, graffiti, or public urination by homeless individuals) send a subliminal message
that disorder in general is being tolerated, and as a result, more
serious crimes will end up being committed (the analogy being that a
broken window left broken shows an image of general dilapidation).
Wilson's theories have been used to justify the implementation of zero tolerance policies by many prominent American mayors, most notably Oscar Goodman in Las Vegas, Richard Riordan in Los Angeles, Rudolph Giuliani in New York City and Gavin Newsom in San Francisco.
Such policies refuse to tolerate even minor crimes; proponents argue
that this will improve the quality of life of local residents. However,
critics of zero tolerance policies believe that such policies neglect
investigation on a case-by-case basis and may lead to unreasonably harsh
penalties for crimes.
Popsicle Index
The Popsicle Index is a quality of life measurement coined by Catherine Austin Fitts
as the percentage of people in a community who believe that a child in
their community can safely leave their home, walk to the nearest
possible location to buy a Popsicle, and walk back home.
In healthcare
Within the field of healthcare, quality of life is often regarded in
terms of how a certain ailment affects a patient on an individual level.
This may be a debilitating weakness that is not life-threatening;
life-threatening illness that is not terminal; terminal illness; the
predictable, natural decline in the health of an elder; an unforeseen
mental/physical decline of a loved one; or chronic, end-stage disease
processes. Researchers at the University of Toronto's Quality of Life
Research Unit define quality of life as "The degree to which a person
enjoys the important possibilities of his or her life" (UofT). Their
Quality of Life Model is based on the categories "being", "belonging",
and "becoming"; respectively who one is, how one is not connected to
one's environment, and whether one achieves one's personal goals, hopes,
and aspirations.
Experience sampling studies show substantial between-person
variability in within-person associations between somatic symptoms and
quality of life.
Hecht and Shiel measure quality of life as “the patient’s ability to
enjoy normal life activities” since life quality is strongly related to
wellbeing without suffering from sickness and treatment. There are multiple assessments available that measure Health-Related Quality of Life, e.g., AQoL-8D, EQ5D - Euroqol, 15D, SF-36, SF-6D, HUI.
In international development
Quality of life is an important concept in the field of international development since it allows development to be analyzed on a measure broader than standard of living. Within development theory,
however, there are varying ideas concerning what constitutes desirable
change for a particular society, and the different ways that quality of
life is defined by institutions therefore shapes how these organizations
work for its improvement as a whole.
Organisations such as the World Bank, for example, declare a goal of "working for a world free of poverty",
with poverty defined as a lack of basic human needs, such as food,
water, shelter, freedom, access to education, healthcare, or employment.
In other words, poverty is defined as a low quality of life. Using
this definition, the World Bank works towards improving quality of life
through the stated goal of lowering poverty and helping people afford a
better quality of life.
Other organizations, however, may also work towards improved
global quality of life using a slightly different definition and
substantially different methods. Many NGOs
do not focus at all on reducing poverty on a national or international
scale, but rather attempt to improve quality of life for individuals or
communities. One example would be sponsorship programs that provide
material aid for specific individuals. Although many organizations of
this type may still talk about fighting poverty, the methods are
significantly different.
Improving quality of life involves action not only by NGOs but also by governments.
Global health has the potential to achieve greater political presence
if governments were to incorporate aspects of human security into foreign policy.
Stressing individuals’ basic rights to health, food, shelter, and
freedom addresses prominent inter-sectoral problems negatively impacting
today’s society and may lead to greater action and resources.
Integration of global health concerns into foreign policy may be
hampered by approaches that are shaped by the overarching roles of
defense and diplomacy.[33]
Palliative care is a multidisciplinary approach to specialized medical and nursing care for people with life-limiting illnesses. It focuses on providing relief from the symptoms, pain, physical stress, and mental stress at any stage of illness. The goal is to improve quality of life for both the person and their family. Evidence as of 2016 supports palliative care's efficacy in the improvement of a patient's quality of life.
Palliative care is provided by a team of physicians, nurses, physiotherapists, occupational therapists and other health professionals who work together with the primary care physician and referred specialists and other hospital or hospice
staff to provide additional support. It is appropriate at any age and
at any stage in a serious illness and can be provided as the main goal
of care or along with curative treatment. Although it is an important
part of end-of-life care,
it is not limited to that stage. Palliative care can be provided across
multiple settings including in hospitals, at home, as part of community
palliative care programs, and in skilled nursing facilities.
Interdisciplinary palliative care teams work with people and their
families to clarify goals of care and provide symptom management,
psycho-social, and spiritual support.
Physicians sometimes use the term palliative care in a sense meaning palliative therapies without curative intent, when no cure can be expected (as often happens in late-stage cancers). For example, tumor debulking can continue to reduce pain from mass effect even when it is no longer curative. A clearer usage is palliative, noncurative therapy when that is what is meant, because palliative care can be used along with curative or aggressive therapies.
Medications and treatments are said to have a palliative effect
if they relieve symptoms without having a curative effect on the
underlying disease or cause. This can include treating nausea related to
chemotherapy or something as simple as morphine to treat the pain of broken leg or ibuprofen to treat pain related to an influenza infection.
Medical uses
Palliative care is given to people who have any serious illness and who have physical, psychological, social, or spiritual distress as a result of the treatment they are seeking or receiving.
Palliative care increases comfort by lessening pain, controlling
symptoms, and lessening stress for the patient and family, and should
not be delayed when it is indicated.
Evidence shows that end-of-life communication interventions decrease
utilization (such as length of stay), particularly in the intensive care
unit setting,
and that palliative care interventions (mostly in the outpatient
setting) are effective for improving patient and caregiver perceptions
of care.
Palliative care is not reserved for people in end-of-life care and can improve quality of life, decrease depressive symptoms, and increase survival time. If palliative care is indicated for a person in an emergency department, then that care should begin in the emergency department immediately and with referral to additional palliative care services.
Emergency care physicians often are the first medical professionals to
open the discussion about palliative care and hospice services with
people needing care and their families.
In some cases, medical specialtyprofessional organizations
recommend that sick people and physicians respond to an illness only
with palliative care and not with a therapy directed at the disease. The
following items are indications named by the American Society of Clinical Oncology as characteristics of a person who should receive palliative care but not any cancer-directed therapy.
people who are ineligible to participate in any appropriate clinical trial
the physician sees no strong evidence that treatment would be effective
These characteristics may be generally applicable to other disease conditions besides cancer.
Scope of the term
Palliative care is a term derived from Latinpalliare,
"to cloak." It refers to specialised medical care for people with
serious illnesses. It is focused on providing people with relief from
the symptoms, pain and stress of a serious illness — whatever the
prognosis. The goal is to improve quality of life for both the sick person and the family as they are the central system for care.
A World Health Organization statement
describes palliative care as "an approach that improves the quality of
life of patients and their families facing the problems associated with
life-threatening illness, through the prevention and relief of suffering
by means of early identification and impeccable assessment and
treatment of pain and other problems, physical, psychosocial and
spiritual." More generally, however, the term "palliative care" may
refer to any care that alleviates symptoms, whether or not there is hope
of a cure by other means; thus, palliative treatments may be used to
alleviate the side effects of curative treatments, such as relieving the nausea associated with chemotherapy.
The term "palliative care" is increasingly used with regard to diseases other than cancer such as chronic, progressive pulmonary disorders, renal disease, chronic heart failure, HIV/AIDS and progressive neurological conditions.
In addition, the rapidly growing field of pediatric palliative care has
clearly shown the need for services geared specifically for children
with serious illness.
While palliative care may seem to offer a broad range of
services, the goals of palliative treatment are concrete: relief from
suffering, treatment of pain and other distressing symptoms,
psychological and spiritual care, a support system to help the
individual live as actively as possible and a support system to sustain
and rehabilitate the individual's family.
Starting in 2006 in the United States, palliative medicine is now
a board certified sub-speciality of internal medicine with specialised
fellowships for physicians who are interested in the field.
Comparison with hospice
In the United States, a distinction should be made between palliative care and hospice care. Hospice services and palliative care programs share similar goals of providing symptom relief and pain management.
Palliative care services can be appropriate for anyone with a serious,
complex illness, whether they are expected to recover fully, to live
with chronic illness for an extended time, or to experience disease
progression.
Hospice care focuses on five topics: communication,
collaboration, compassionate caring, comfort, and cultural (spiritual)
care. The end of life treatment in hospice differs from that in
hospitals because the medical and support staff are specialized in
treating only the terminally ill. This specialization allows for the
staff to handle the legal and ethical matters surrounding death more
thoroughly and efficiently with survivors of the patient. Hospice
comfort care also differentiates because patients are admitted to
continue managing discomfort relief treatments while the terminally ill
receiving comfort care in a hospital are admitted because end-of-life
symptoms are poorly controlled or because current outpatient symptom
relief efforts are ineffective.
Hospice
is a type of care involving palliation without curative intent.
Usually, it is used for people with no further options for curing their
disease or in people who have decided not to pursue further options that
are arduous,
likely to cause more symptoms, and not likely to succeed. Hospice care
under the Medicare Hospice Benefit requires that two physicians certify
that a person has less than six months to live if the disease follows
its usual course. This does not mean, though, that if a person is still
living after six months in hospice he or she will be discharged from the
service.
The philosophy and multi-disciplinary team approach are similar
with hospice and palliative care, and indeed the training programs and
many organizations provide both. The biggest difference between hospice
and palliative care is the type of illness people have, where they are
in their illness especially related to prognosis, and their goals/wishes
regarding curative treatment.
Outside the United States there is generally no such division of
terminology or funding, and all such care with a primarily palliative
focus, whether or not for people with a terminal illness, is usually
referred to as palliative care.
Outside the United States the term hospice
usually refers to a building or institution which specializes in
palliative care, rather than to a particular stage of care progression.
Such institutions may predominantly specialize in providing care in an
end-of-life setting; but they may also be available for people with
other specific palliative care needs.
Comfort care in hospitals
Despite
the fact that many individuals are now dying either at home or in a
care facility, as of 2010, 29% of all deaths in the United States
occurred in a hospital setting, these statistics increased in 2016 to
about 60% of all deaths occurred in the hospital which is a substantial
increase from 2010. which is still a rather substantial percentage. Comfort care can require meticulous techniques to alleviate distress caused by severe health troubles near the end of life.
Doctors, nurses, nurses aides, social workers, chaplains, and other
hospital support staff work systematically together to carry out end of
life care and comfort in the hospital setting. Hospitals are able to
accommodate the demand for acute medical attention as well as education
and supportive therapies for the families of their loved ones. Within
hospital settings, there is an increasing shortage of board-certified
palliative care specialists. This shortage results in the responsibility
of comfort care falling on the shoulders of other individuals.
Comfort care in hospitals differs from comfort care in hospices
because patients’ end-of-life symptoms are poorly controlled prior to
checking in. The average time between death and the admission of a
terminally ill patient is 7.9 days.
Patients receiving end of life care in a hospice setting typically have
a longer time between their admission and death; 60% of hospice
patients passed within approximately 30 days of being admitted. The
average length of stay at a hospice house from admission to death is
about 48 hours.
Practice
Assessment of symptoms
A method for the assessment of symptoms in people admitted to palliative care is the Edmonton Symptoms Assessment Scale (ESAS), in which there are eight visual analog scales (VAS) of 0 to 10, indicating the levels of pain, activity, nausea, depression, anxiety, drowsiness, appetite and sensation of well-being, sometimes with the addition of shortness of breath. On the scales, 0 means that the symptom is absent and 10 that it is of worst possible severity.
It is completed either by the person in need of care alone, by the
person with a nurse's assistance, or by the nurses or relatives.
End-of-life care
Medications used in palliative care are used differently from
standard medications, based on established practices with varying
degrees of evidence.
Examples include the use of antipsychotic medications to treat nausea,
anticonvulsants to treat pain, and morphine to treat dyspnea. Routes of
administration may differ from acute or chronic care, as many people in
palliative care lose the ability to swallow. A common alternative route
of administration is subcutaneous, as it is less traumatic and less
difficult to maintain than intravenous medications. Other routes of
administration include sublingual, intramuscular and transdermal.
Medications are often managed at home by family or nursing support.
Palliative care interventions in care homes may contribute to
lower discomfort for residents with dementia, and to improve family
member's views of the quality of care.
However, higher quality research is needed to support the benefits of
these interventions for older people dying in these facilities.
Dealing with distress
For many, knowing that the end of life is approaching induces various
forms of emotional and psychological distress. The key to effective
palliative care is to provide a safe way for the individual to address
their distresses, that is to say their total suffering, a concept first thought up by Cicely Saunders, and now widely used, for instance by authors like Twycross or Woodruff. Dealing with total suffering
involves a broad range of concerns, starting with treating physical
symptoms such as pain, nausea and breathlessness with various
medications. Usually, the sick person's concerns are pain, fears about
the future, loss of independence, worries about their family and feeling
like a burden. The interdisciplinary team also often includes a
licensed mental health professional, a licensed social worker, or a counselor, as well as spiritual support such as a chaplain,
who can play roles in helping people and their families cope. There are
five principal methods for addressing patient anxiety in palliative
care settings. They are counseling, visualisation, cognitive methods,
drug therapy and relaxation therapy. Palliative pets can play a role in
this last category.
Total pain
To
take care of a patient’s pain that is at the End of Life, one has to
understand that it is of the utmost importance to take care of the Total
Body Pain. This Total Body Pain is the sum of all of the physical,
psychosocial, and spiritual pain they can be enduring at this stressful
time.
When someone is at the end of their life and they are seeking comfort
care, the majority of the time they are in excruciating pain. This pain
can be a physical manifestation to where their body is beginning to
fight back on itself causing a multitude of physical symptoms. The pain
can be in a psychosocial manifestation and can be dealt with by the
medical team having open communication about how to cope with and
prepare for death. The last aspect of pain that is included in Total
Body Pain is the spiritual pain manifestation; if patients spiritual
needs are met, then studies show that they will be more likely to get
hospice care. Addressing the needs of the Total Body Pain can lead to a
better quality of life overall for the patients.
Physical pain
The
Physical pain can be managed in a way that uses adequate pain
medications as long as they will not put the patient at further risk for
developing or increasing medical diagnoses such as heart problems or
difficulty breathing.
Patients at the end of life can exhibit many physical symptoms that can
cause extreme pain such as dyspnea (or difficulty breathing), Coughing,
Xerostomia (Dry Mouth), Nausea and Vomiting, Constipation, Fever, Delirium, Excessive Oral and Pharyngeal Secretions (“Death Rattle”) and many more painful symptoms can be seen that they are hoping to get some pain relief from.
Psychosocial pain
Once
the immediate physical pain has been dealt with, it is important to
remember to be a compassionate and empathetic caregiver that is there to
listen and be there for their patients. Being able to identify the
distressing factors in their life other than the pain can help them be
more comfortable.
When a patient has their needs met then they are more likely to be open
to the idea of hospice or treatments outside of comfort care. Having a
Psychosocial assessment allows the medical team to help facilitate a
healthy patient-family understanding of adjustment, coping and support.
This communication between the medical team and the patients and family
can also help facilitate discussions on the process of maintaining and
enhancing relationships, finding meaning in the dying process, and
achieving a sense of control while confronting and preparing for death.
Spiritual pain
When
a patient is at the end of life, one of the most important things that a
lot of them want to talk to their physicians about is their
spirituality. Regardless of this desire, less than 50% of physicians
believe that it is their job to address these religious concerns, and
only a minority of patients have been recorded to have had their
spiritual needs met.
Most of the time these patients are referred to Chaplain services if
they are available or they rely on the medical staff available and any
family and friends that may be there as well. Chaplain
services are one of the best services available for meeting this
spiritual need. That being said, there are not enough Chaplains
available at any one time and the majority of them are not qualified to
be giving services to Comfort Care patients whom often have the most
serious illnesses. According to a multiple site cohort study involving
343 advanced cancer patients, it was found that those who had their
religious needs met were more likely than those who didn’t have their
religious needs met to go through with more hospice care and to not get
unnecessary treatments at the end of life, as well as the study showed
that they ended up having higher quality of life scores than those who
did not have their spiritual needs met.
Children's palliative care
Palliative
care for children and young people is an active and total approach to
care, from the point of diagnosis, throughout the child’s life, death
and beyond. It embraces physical, emotional, social and spiritual
elements and focuses on the enhancement of quality of life for the child
or young person, and support for the whole family. It includes the
management of distressing symptoms, provision of short breaks, end of life care and bereavement support.
Palliative care can be introduced at any point throughout a
child’s life; it is completely individual. Some children may require
palliative care from birth, others only as their condition deteriorates.
Families may also vary as to whether they wish to pursue treatments
aimed to cure or significantly prolong life. In practice, palliative
care should be offered from diagnosis of a life-limiting condition or
recognition that curative treatment for a life-threatening condition is
not an option; however, each situation is different and care should be
tailored to the child.
Terminology
Life-limiting/life-shortening conditions
are those for which there is no reasonable hope of cure and from which
children or young people will die. Some of these conditions cause
progressive deterioration rendering the child increasingly dependent on
parents and carers.[30]
Life-threatening conditions are those for which curative
treatment may be feasible but can fail, such as cancer. Children in
long-term remission or following successful curative treatment are not
included.
Children's palliative care (by country)
UK
There
are an estimated 49,000 children and young people in the UK living with
a life-threatening or life-limiting condition that may require
palliative care services. A 2015 survey from the Royal College of Nursing
(RCN) found that nearly a third of children's nurses said they don't
have the resources to deliver adequate care in the home setting.
History
Palliative care began in the hospice movement and is now widely used outside of traditional hospice care. Hospices
were originally places of rest for travellers in the 4th century. In
the 19th century a religious order established hospices for the dying in
Ireland and London.
The modern hospice is a relatively recent concept that originated and
gained momentum in the United Kingdom after the founding of St. Christopher's Hospice in 1967. It was founded by Dame Cicely Saunders,
widely regarded as the founder of the modern hospice movement. Dame
Cicely Saunders, went to St.Thomas’ Hospital in 1944 to become a nurse.
After working with the terminally ill she went and became a doctor in
1957 so that she could start her own hospice.
Dr. Cicely Saunders then opened her own hospice after she saw all of
the terminally ill patients that she nursed in excruciating pain because
their pain was not being managed like it should have been.
In the UK in 2005 there were just under 1,700 hospice services
consisting of 220 inpatient units for adults with 3,156 beds, 33
inpatient units for children with 255 beds, 358 home care services, 104
hospice at home services, 263 day care services and 293 hospital teams.
These services together helped over 250,000 people in 2003 and 2004.
Hospice in the United States has grown from a volunteer-led
movement to a significant part of the health care system. In 2005 around
1.2 million persons and their families received hospice care. Hospice
is the only Medicare benefit that includes pharmaceuticals, medical
equipment, twenty-four-hour/seven-day-a-week access to care and support
for loved ones following a death. Most hospice care is delivered at
home. Hospice care is also available to people in home-like hospice
residences, nursing homes, assisted living facilities, veterans'
facilities, hospitals, and prisons.
The first United States hospital-based palliative care consult service was developed by the Wayne State University School of Medicine in 1985 at Detroit Receiving Hospital. The first palliative medicine program in the United States was started in 1987 by Declan Walsh, MD at the Cleveland Clinic Cancer Center in Cleveland, Ohio. This is a comprehensive integrated program, responsible for several notable innovations in US palliative medicine; the first clinical and research fellowship (1991),
acute care palliative medicine inpatient unit (1994), and Chair in
Palliative Medicine (1994). The program evolved into The Harry R.
Horvitz Center for Palliative Medicine which was designated as a World Health Organization international demonstration project and accredited by the European Society for Medical Oncology as an Integrated Center of Oncology and Palliative Care.
Other programs followed: most notable the Palliative Care Program at
the Medical College of Wisconsin (1993); Pain and Palliative Care
Service, Memorial Sloan-Kettering Cancer Center (1996); and The Lilian
and Benjamin Hertzberg Palliative Care Institute, Mount Sinai School of
Medicine (1997). Since then there has been a dramatic increase in
hospital-based palliative care programs, now numbering more than 1,400.
Eighty percent of US hospitals with more than 300 beds have a program.
A widely cited report in 2007 of a randomized controlled trial
with 298 patients found that palliative care delivered to patients and
their caregivers at home improved satisfaction with care while
decreasing medical service use and the cost of care.
A 2009 study regarding the availability of palliative care in 120
US cancer center hospitals reported the following: only 23% of the
centers have beds that are dedicated to palliative care; 37% offer
inpatient hospice; 75% have a median time of referral to palliative care
to the time of death of 30 to 120 days; research programs, palliative
care fellowships, and mandatory rotations for oncology fellows were
uncommon.
The results of a 2010 study in The New England Journal of Medicine
showed that people with lung cancer who received early palliative care
in addition to standard oncologic care experienced less depression,
increased quality of life and survived 2.7 months longer than those
receiving standard oncologic care.
In 2011, The Joint Commission (an independent, not-for-profit
organization that accredits and certifies thousands of health care
organizations and programs in the United States) began an Advanced
Certification Program for Palliative Care that recognizes hospital
inpatient programs. In order to obtain this certification, a hospital
must show superior care and enhancement of the quality of life for
people with serious illness.
The first pan-European center devoted to improving palliative care and end-of-life care was established in Trondheim, Norway in 2009. The center is based at NTNU's Faculty of Medicine and at St. Olav's Hospital/Trondheim University Hospital and coordinates efforts between groups and individual researchers across Europe, specifically Scotland, England, Italy, Denmark, Germany and Switzerland, along with the United States, Canada and Australia.
Society
Costs and funding
Families
of persons who get a referral to palliative care during a
hospitalization incur less costs than people with similar conditions who
do not get a palliative care referral.
Funding for hospice and palliative care services varies. In Great Britain and many other countries all palliative care is offered free, either through the National Health Service
(as in the UK) or through charities working in partnership with the
local health services. Palliative care services in the US are paid by
philanthropy, fee-for service mechanisms, or from direct hospital
support while hospice care is provided as Medicare benefit; similar
hospice benefits are offered by Medicaid and most private health
insurers. Under the Medicare Hospice Benefit (MHB) a person signs off
their Medicare Part B (acute hospital payment) and enrols in the MHB
through Medicare Part B with direct care provided by a Medicare
certified hospice agency. Under terms of the MHB the Hospice agency is
responsible for the Plan of Care and may not bill the person for
services. The hospice agency, together with the person's primary
physician, is responsible for determining the Plan of Care. All costs
related to the terminal illness are paid from a per diem rate (~US
$126/day) that the hospice agency receives from Medicare – this includes
all drugs and equipment, nursing, social service, chaplain visits and
other services deemed appropriate by the hospice agency; Medicare does
not pay for custodial care. People may elect to withdraw from the MHB
and return to Medicare Part A and later re-enrol in hospice.
Certification and training for services
In most countries hospice care and palliative care is provided by an interdisciplinary team consisting of physicians, pharmacists, registered nurses, nursing assistants, social workers, hospice chaplains, physiotherapists, occupational therapists, complementary therapists, volunteers, and, most importantly, the family.
The team's focus is to optimize the person's comfort. In some
countries, additional members of the team may include certified nursing
assistants and home healthcare aides, as well as volunteers from the
community (largely untrained but some being skilled medical personnel),
and housekeepers. In the United States, the physician subspeciality of hospice and palliative medicine was established in 2006 to provide expertise in the care of people with life-limiting, advanced disease, and catastrophic injury;
the relief of distressing symptoms; the coordination of
interdisciplinary care in diverse settings; the use of specialized care
systems including hospice; the management of the imminently dying
patient; and legal and ethical decision making in end-of-life care.
Caregivers, both family and volunteers,
are crucial to the palliative care system. Caregivers and people being
treated often form lasting friendships over the course of care. As a
consequence caregivers may find themselves under severe emotional and
physical strain. Opportunities for caregiver respite
are some of the services hospices provide to promote caregiver
well-being. Respite may last a few hours up to several days (the latter
being done by placing the primary person being cared for in a nursing home or inpatient hospice unit for several days).
In the US, board certification for physicians in palliative care was through the American Board of Hospice and Palliative Medicine; recently this was changed to be done through any of 11 different speciality boards through an American Board of Medical Specialties-approved procedure. Additionally, board certification is available to osteopathic physicians (D.O.) in the United States through four medical speciality boards through an American Osteopathic Association Bureau of Osteopathic Specialists-approved procedure. More than 50 fellowship programs provide one to two years of speciality training following a primary residency. In Britain palliative care has been a full speciality of medicine since 1989 and training is governed by the same regulations through the Royal College of Physicians as with any other medical speciality.
Nurses, in the United States and internationally, can receive
continuing education credits through Palliative Care specific trainings,
such as those offered by End-of-Life Nursing Education Consortium (ELNEC).
In India Tata Memorial Centre, Mumbai has started a physician
course in palliative medicine for the first time in the country since
2012.
Regional variation in services
In the United States, hospice and palliative care represent two
different aspects of care with similar philosophy, but with different
payment systems and location of services. Palliative care services are
most often provided in acute care hospitals organized around an
interdisciplinary consultation service, with or without an acute
inpatient palliative care unit. Palliative care may also be provided in
the dying person's home as a "bridge" program between traditional US
home care services and hospice care or provided in long-term care
facilities.
In contrast over 80% of hospice care in the US is provided at home with
the remainder provided to people in long-term care facilities or in
free standing hospice residential facilities. In the UK hospice is seen
as one part of the speciality of palliative care and no differentiation
is made between 'hospice' and 'palliative care'.
In the UK palliative care services offer inpatient care, home
care, day care and outpatient services, and work in close partnership
with mainstream services. Hospices often house a full range of services
and professionals for children and adults. In 2015 the UK's palliative
care was ranked as the best in the world "due to comprehensive national
policies, the extensive integration of palliative care into the National Health Service, a strong hospice movement, and deep community engagement on the issue."
Acceptance
The
focus on a person's quality of life has increased greatly since the
1990s. In the United States today, 55% of hospitals with more than 100
beds offer a palliative-care program, and nearly one-fifth of community hospitals have palliative-care programs.
A relatively recent development is the palliative-care team, a
dedicated health care team that is entirely geared toward palliative
treatment.
Physicians practicing palliative care do not always receive
support from the people they are treating, family members, healthcare
professionals or their social peers. More than half of physicians in one
survey reported that they have had at least one experience where a
patient's family members, another physician or another health care
professional had characterised their work as being "euthanasia,
murder or killing" during the last five years. A quarter of them had
received similar comments from their own friends or family member, or
from a patient.
Euthanasia (from Greek: εὐθανασία; "good death": εὖ, eu; "well" or "good" – θάνατος, thanatos; "death") is the practice of intentionally ending a life to relieve pain and suffering.
There are different euthanasia laws in each country. The British House of LordsSelect Committee on Medical Ethics
defines euthanasia as "a deliberate intervention undertaken with the
express intention of ending a life, to relieve intractable suffering". In the Netherlands and Belgium, euthanasia is understood as "termination of life by a doctor at the request of a patient".
The Dutch law however, does not use the term 'euthanasia' but includes
it under the broader definition of "assisted suicide and termination of
life on request".
Euthanasia is categorized in different ways, which include voluntary, non-voluntary, or involuntary. Voluntary euthanasia is legal in some countries. Non-voluntary euthanasia (patient's consent unavailable) is illegal in all countries. Involuntary euthanasia (without asking consent or against the patient's will) is also illegal in all countries and is usually considered murder. As of 2006, euthanasia is the most active area of research in contemporary bioethics.
In some countries there is a divisive public controversy over the
moral, ethical, and legal issues of euthanasia. Passive euthanasia
(known as "pulling the plug") is legal under some circumstances in many
countries. Active euthanasia however is legal or de facto legal in only a
handful of countries (e.g. Belgium, Canada, Switzerland) and is limited
to specific circumstances and the approval of councilors and doctors or
other specialists. In some countries such as Nigeria, Saudi Arabia and
Pakistan, support for active euthanasia is almost non-existent.
Definition
Like other terms borrowed from history, "euthanasia" has had
different meanings depending on usage. The first apparent usage of the
term "euthanasia" belongs to the historian Suetonius, who described how the Emperor Augustus, "dying quickly and without suffering in the arms of his wife, Livia, experienced the 'euthanasia' he had wished for." The word "euthanasia" was first used in a medical context by Francis Bacon
in the 17th century, to refer to an easy, painless, happy death, during
which it was a "physician's responsibility to alleviate the 'physical
sufferings' of the body." Bacon referred to an "outward euthanasia"—the
term "outward" he used to distinguish from a spiritual concept—the
euthanasia "which regards the preparation of the soul."
In current usage, euthanasia has been defined as the "painless inducement of a quick death". However, it is argued that this approach fails to properly define
euthanasia, as it leaves open a number of possible actions which would
meet the requirements of the definition, but would not be seen as
euthanasia. In particular, these include situations where a person kills
another, painlessly, but for no reason beyond that of personal gain; or
accidental deaths that are quick and painless, but not intentional.
Another approach incorporates the notion of suffering into the definition. The definition offered by the Oxford English Dictionary
incorporates suffering as a necessary condition, with "the painless
killing of a patient suffering from an incurable and painful disease or
in an irreversible coma",
This approach is included in Marvin Khol and Paul Kurtz's definition of
it as "a mode or act of inducing or permitting death painlessly as a
relief from suffering".
Counterexamples can be given: such definitions may encompass killing a
person suffering from an incurable disease for personal gain (such as to
claim an inheritance), and commentators such as Tom Beauchamp and Arnold Davidson have argued that doing so would constitute "murder simpliciter" rather than euthanasia.
The third element incorporated into many definitions is that of
intentionality – the death must be intended, rather than being
accidental, and the intent of the action must be a "merciful death". Michael Wreen argued that "the principal thing that distinguishes
euthanasia from intentional killing simpliciter is the agent's motive:
it must be a good motive insofar as the good of the person killed is
concerned."
Similarly, Heather Draper speaks to the importance of motive, arguing
that "the motive forms a crucial part of arguments for euthanasia,
because it must be in the best interests of the person on the receiving
end." Definitions such as that offered by the House of LordsSelect Committee on Medical Ethics
take this path, where euthanasia is defined as "a deliberate
intervention undertaken with the express intention of ending a life, to
relieve intractable suffering." Beauchamp and Davidson also highlight Baruch Brody's
"an act of euthanasia is one in which one person ... (A) kills another
person (B) for the benefit of the second person, who actually does
benefit from being killed".
Draper argued that any definition of euthanasia must incorporate
four elements: an agent and a subject; an intention; a causal proximity,
such that the actions of the agent lead to the outcome; and an outcome.
Based on this, she offered a definition incorporating those elements,
stating that euthanasia "must be defined as death that results from the
intention of one person to kill another person, using the most gentle
and painless means possible, that is motivated solely by the best
interests of the person who dies."
Prior to Draper, Beauchamp and Davidson had also offered a definition
that includes these elements. Their definition specifically discounts fetuses to distinguish between abortions and euthanasia:
"In summary, we have argued ...
that the death of a human being, A, is an instance of euthanasia if and
only if (1) A's death is intended by at least one other human being, B,
where B is either the cause of death or a causally relevant feature of
the event resulting in death (whether by action or by omission); (2)
there is either sufficient current evidence for B to believe that A is
acutely suffering or irreversibly comatose, or there is sufficient
current evidence related to A's present condition such that one or more
known causal laws supports B's belief that A will be in a condition of
acute suffering or irreversible comatoseness; (3) (a) B's primary reason
for intending A's death is cessation of A's (actual or predicted
future) suffering or irreversible comatoseness, where B does not intend
A's death for a different primary reason, though there may be other
relevant reasons, and (b) there is sufficient current evidence for
either A or B that causal means to A's death will not produce any more
suffering than would be produced for A if B were not to intervene; (4)
the causal means to the event of A's death are chosen by A or B to be as
painless as possible, unless either A or B has an overriding reason for
a more painful causal means, where the reason for choosing the latter
causal means does not conflict with the evidence in 3b; (5) A is a
nonfetal organism."
Wreen, in part responding to Beauchamp and Davidson, offered a six-part definition:
"Person A committed an act of
euthanasia if and only if (1) A killed B or let her die; (2) A intended
to kill B; (3) the intention specified in (2) was at least partial cause
of the action specified in (1); (4) the causal journey from the
intention specified in (2) to the action specified in (1) is more or
less in accordance with A's plan of action; (5) A's killing of B is a
voluntary action; (6) the motive for the action specified in (1), the
motive standing behind the intention specified in (2), is the good of
the person killed."
Wreen also considered a seventh requirement: "(7) The good specified
in (6) is, or at least includes, the avoidance of evil", although as
Wreen noted in the paper, he was not convinced that the restriction was
required.
In discussing his definition, Wreen noted the difficulty of justifying euthanasia when faced with the notion of the subject's "right to life". In response, Wreen argued that euthanasia has to be voluntary, and that "involuntary euthanasia is, as such, a great wrong".
Other commentators incorporate consent more directly into their
definitions. For example, in a discussion of euthanasia presented in
2003 by the European Association of Palliative Care (EPAC) Ethics Task
Force, the authors offered: "Medicalized killing of a person without the
person's consent, whether nonvoluntary (where the person in unable to
consent) or involuntary (against the person's will) is not euthanasia:
it is murder. Hence, euthanasia can be voluntary only." Although the EPAC Ethics Task Force argued that both non-voluntary and involuntary euthanasia
could not be included in the definition of euthanasia, there is
discussion in the literature about excluding one but not the other.
Classification of euthanasia
Euthanasia may be classified into three types, according to whether a person gives informed consent: voluntary, non-voluntary and involuntary.
There is a debate within the medical and bioethics literature
about whether or not the non-voluntary (and by extension, involuntary)
killing of patients can be regarded as euthanasia, irrespective of
intent or the patient's circumstances. In the definitions offered by
Beauchamp and Davidson and, later, by Wreen, consent on the part of the
patient was not considered as one of their criteria, although it may
have been required to justify euthanasia. However, others see consent as essential.
Voluntary euthanasia
Voluntary euthanasia
is conducted with the consent of the patient. Active voluntary
euthanasia is legal in Belgium, Luxembourg and the Netherlands. Passive
voluntary euthanasia is legal throughout the US per Cruzan v. Director, Missouri Department of Health. When the patient brings about his or her own death with the assistance of a physician, the term assisted suicide
is often used instead. Assisted suicide is legal in Switzerland and the
U.S. states of California, Oregon, Washington, Montana and Vermont.
Non-voluntary euthanasia
Non-voluntary euthanasia is conducted when the consent of the patient is unavailable. Examples include child euthanasia, which is illegal worldwide but decriminalised under certain specific circumstances in the Netherlands under the Groningen Protocol.
Voluntary, non-voluntary and involuntary types can be further divided into passive or active variants. Passive euthanasia entails the withholding treatment necessary for the continuance of life. Active euthanasia entails the use of lethal substances or forces (such as administering a lethal injection),
and is the more controversial. While some authors consider these terms
to be misleading and unhelpful, they are nonetheless commonly used. In
some cases, such as the administration of increasingly necessary, but
toxic doses of painkillers, there is a debate whether or not to regard the practice as active or passive.
Euthanasia was practiced in Ancient Greece and Rome: for example, hemlock was employed as a means of hastening death on the island of Kea, a technique also employed in Marseilles. Euthanasia, in the sense of the deliberate hastening of a person's death, was supported by Socrates, Plato and Seneca the Elder in the ancient world, although Hippocrates appears to have spoken against the practice,
writing "I will not prescribe a deadly drug to please someone, nor give
advice that may cause his death" (noting there is some debate in the
literature about whether or not this was intended to encompass
euthanasia).
Early modern period
The term euthanasia in the earlier sense of supporting someone as they died, was used for the first time by Francis Bacon. In his work, Euthanasia medica, he chose this ancient Greek word and, in doing so, distinguished between euthanasia interior, the preparation of the soul for death, and euthanasia exterior,
which was intended to make the end of life easier and painless, in
exceptional circumstances by shortening life. That the ancient meaning
of an easy death came to the fore again in the early modern period can be seen from its definition in the 18th century Zedlers Universallexikon:
Euthanasia: a very gentle and quiet death, which happens without painful convulsions. The word comes from ευ, bene, well, and θανατος, mors, death.
The concept of euthanasia in the sense of alleviating the process of death goes back to the medical historian, Karl Friedrich Heinrich Marx,
who drew on Bacon's philosophical ideas. According to Marx, a doctor
had a moral duty to ease the suffering of death through encouragement,
support and mitigation using medication. Such an "alleviation of death"
reflected the contemporary zeitgeist,
but was brought into the medical canon of responsibility for the first
time by Marx. Marx also stressed the distinction between the theological
care of the soul of sick people from the physical care and medical
treatment by doctors.
Euthanasia in its modern sense has always been strongly opposed in the Judeo-Christian tradition. Thomas Aquinas opposed both and argued that the practice of euthanasia contradicted our natural human instincts of survival,
as did Francois Ranchin (1565–1641), a French physician and professor
of medicine, and Michael Boudewijns (1601–1681), a physician and
teacher. Other voices argued for euthanasia, such as John Donne in 1624, and euthanasia continued to be practised. In 1678, the publication of Caspar Questel's De pulvinari morientibus non-subtrahend, ("On the pillow of which the dying should not be deprived"),
initiated debate on the topic. Questel described various customs which
were employed at the time to hasten the death of the dying, (including
the sudden removal of a pillow, which was believed to accelerate death),
and argued against their use, as doing so was "against the laws of God
and Nature". This view was shared by others who followed, including Philipp Jakob Spener, Veit Riedlin and Johann Georg Krünitz.
Despite opposition, euthanasia continued to be practised, involving
techniques such as bleeding, suffocation, and removing people from their
beds to be placed on the cold ground.
Suicide and euthanasia became more accepted during the Age of Enlightenment. Thomas More wrote of euthanasia in Utopia, although it is not clear if More was intending to endorse the practice.
Other cultures have taken different approaches: for example, in Japan
suicide has not traditionally been viewed as a sin, as it is used in
cases of honor, and accordingly, the perceptions of euthanasia are
different from those in other parts of the world.
Beginnings of the contemporary euthanasia debate
In the mid-1800s, the use of morphine to treat "the pains of death" emerged, with John Warren recommending its use in 1848. A similar use of chloroform
was revealed by Joseph Bullar in 1866. However, in neither case was it
recommended that the use should be to hasten death. In 1870 Samuel
Williams, a schoolteacher, initiated the contemporary euthanasia debate
through a speech given at the Birmingham Speculative Club in England,
which was subsequently published in a one-off publication entitled Essays of the Birmingham Speculative Club, the collected works of a number of members of an amateur philosophical society. Williams' proposal was to use chloroform to deliberately hasten the death of terminally ill patients:
That in all cases of hopeless and
painful illness, it should be the recognized duty of the medical
attendant, whenever so desired by the patient, to administer chloroform
or such other anaesthetic as may by-and-bye supersede chloroform – so as
to destroy consciousness at once, and put the sufferer to a quick and
painless death; all needful precautions being adopted to prevent any
possible abuse of such duty; and means being taken to establish, beyond
the possibility of doubt or question, that the remedy was applied at the
express wish of the patient.
— Samuel Williams (1872), Euthanasia Williams and Northgate: London.
The essay was favourably reviewed in The Saturday Review, but an editorial against the essay appeared in The Spectator.
From there it proved to be influential, and other writers came out in
support of such views: Lionel Tollemache wrote in favour of euthanasia,
as did Annie Besant, the essayist and reformer who later became involved with the National Secular Society, considering it a duty to society to "die voluntarily and painlessly" when one reaches the point of becoming a 'burden'. Popular Science analyzed the issue in May 1873, assessing both sides of the argument.
Kemp notes that at the time, medical doctors did not participate in the
discussion; it was "essentially a philosophical enterprise ... tied
inextricably to a number of objections to the Christian doctrine of the
sanctity of human life".
Early euthanasia movement in the United States
Felix Adler, circa 1913, the first prominent American to argue for permitting suicide in cases of chronic illness
The rise of the euthanasia movement in the United States coincided with the so-called Gilded Age,
a time of social and technological change that encompassed an
"individualistic conservatism that praised laissez-faire economics, scientific method, and rationalism", along with major depressions, industrialisation and conflict between corporations and labour unions.
It was also the period in which the modern hospital system was
developed, which has been seen as a factor in the emergence of the
euthanasia debate.
Robert Ingersoll
argued for euthanasia, stating in 1894 that where someone is suffering
from a terminal illness, such as terminal cancer, they should have a
right to end their pain through suicide. Felix Adler offered a similar
approach, although, unlike Ingersoll, Adler did not reject religion. In
fact, he argued from an Ethical Culture
framework. In 1891, Alder argued that those suffering from overwhelming
pain should have the right to commit suicide, and, furthermore, that it
should be permissible for a doctor to assist – thus making Adler the
first "prominent American" to argue for suicide in cases where people
were suffering from chronic illness. Both Ingersoll and Adler argued for voluntary euthanasia of adults suffering from terminal ailments.
Dowbiggin argues that by breaking down prior moral objections to
euthanasia and suicide, Ingersoll and Adler enabled others to stretch
the definition of euthanasia.
The first attempt to legalise euthanasia took place in the United States, when Henry Hunt introduced legislation into the General Assembly of Ohio in 1906. Hunt did so at the behest of Anna S. Hall,
a wealthy heiress who was a major figure in the euthanasia movement
during the early 20th century in the United States. Hall had watched her
mother die after an extended battle with liver cancer,
and had dedicated herself to ensuring that others would not have to
endure the same suffering. Towards this end she engaged in an extensive
letter writing campaign, recruited Lurana Sheldon and Maud Ballington Booth, and organised a debate on euthanasia at the annual meeting of the American Humane Association in 1905 – described by Jacob Appel as the first significant public debate on the topic in the 20th century.
Hunt's bill called for the administration of an anesthetic
to bring about a patient's death, so long as the person is of lawful
age and sound mind, and was suffering from a fatal injury, an
irrevocable illness, or great physical pain. It also required that the
case be heard by a physician, required informed consent in front of
three witnesses, and required the attendance of three physicians who had
to agree that the patient's recovery was impossible. A motion to reject
the bill outright was voted down, but the bill failed to pass, 79 to
23.
Along with the Ohio euthanasia proposal, in 1906 Assemblyman Ross Gregory introduced a proposal to permit euthanasia to the Iowa legislature.
However, the Iowa legislation was broader in scope than that offered in
Ohio. It allowed for the death of any person of at least ten years of
age who suffered from an ailment that would prove fatal and cause
extreme pain, should they be of sound mind and express a desire to
artificially hasten their death. In addition, it allowed for infants to
be euthanised if they were sufficiently deformed, and permitted
guardians to request euthanasia on behalf of their wards. The proposed
legislation also imposed penalties on physicians who refused to perform
euthanasia when requested: a 6–12 month prison term and a fine of
between $200 and $1,000. The proposal proved to be controversial.
It engendered considerable debate and failed to pass, having been
withdrawn from consideration after being passed to the Committee on
Public Health.
After 1906 the euthanasia debate reduced in intensity,
resurfacing periodically, but not returning to the same level of debate
until the 1930s in the United Kingdom.
Euthanasia opponent Ian Dowbiggin argues that the early membership of the Euthanasia Society of America
(ESA) reflected how many perceived euthanasia at the time, often seeing
it as a eugenics matter rather than an issue concerning individual
rights.
Dowbiggin argues that not every eugenist joined the ESA "solely for
eugenic reasons", but he postulates that there were clear ideological
connections between the eugenics and euthanasia movements.
In January 1936, King George V was given a fatal dose of morphine and cocaine
to hasten his death. At the time he was suffering from
cardio-respiratory failure, and the decision to end his life was made by
his physician, Lord Dawson. Although this event was kept a secret for over 50 years, the death of George V coincided with proposed legislation in the House of Lords to legalise euthanasia.
A 24 July 1939 killing of a severely disabled infant in Nazi Germany was described in a BBC "Genocide Under the Nazis Timeline" as the first "state-sponsored euthanasia".
Parties that consented to the killing included Hitler's office, the
parents, and the Reich Committee for the Scientific Registration of
Serious and Congenitally Based Illnesses. The Telegraph noted that the killing of the disabled infant—whose name was Gerhard Kretschmar,
born blind, with missing limbs, subject to convulsions, and reportedly
"an idiot"— provided "the rationale for a secret Nazi decree that led to
'mercy killings' of almost 300,000 mentally and physically handicapped
people".
While Kretchmar's killing received parental consent, most of the 5,000
to 8,000 children killed afterwards were forcibly taken from their
parents.
The "euthanasia campaign" of mass murder gathered momentum on 14
January 1940 when the "handicapped" were killed with gas vans and
killing centres, eventually leading to the deaths of 70,000 adult
Germans. Professor Robert Jay Lifton, author of The Nazi Doctors
and a leading authority on the T4 program, contrasts this program with
what he considers to be a genuine euthanasia. He explains that the Nazi
version of "euthanasia" was based on the work of Adolf Jost, who published The Right to Death (Das Recht auf den Tod) in 1895. Lifton writes:
Jost argued that control over the death of the individual
must ultimately belong to the social organism, the state. This concept
is in direct opposition to the Anglo-American concept of euthanasia,
which emphasizes the individual's 'right to die' or 'right to
death' or 'right to his or her own death,' as the ultimate human claim.
In contrast, Jost was pointing to the state's right to kill. ...
Ultimately the argument was biological: 'The rights to death [are] the
key to the fitness of life.' The state must own death—must kill—in order
to keep the social organism alive and healthy.
In modern terms, the use of "euthanasia" in the context of Action T4 is seen to be a euphemism to disguise a program of genocide, in which people were killed on the grounds of "disabilities, religious beliefs, and discordant individual values".
Compared to the discussions of euthanasia that emerged post-war, the
Nazi program may have been worded in terms that appear similar to the
modern use of "euthanasia", but there was no "mercy" and the patients
were not necessarily terminally ill. Despite these differences, historian and euthanasia opponent Ian Dowbiggin
writes that "the origins of Nazi euthanasia, like those of the American
euthanasia movement, predate the Third Reich and were intertwined with
the history of eugenics and Social Darwinism, and with efforts to
discredit traditional morality and ethics."
The 1949 New York State Petition for Euthanasia and Catholic opposition
On 6 January 1949, the Euthanasia Society of America presented to the New York State Legislature
a petition to legalize euthanasia, signed by 379 leading Protestant and
Jewish ministers, the largest group of religious leaders ever to have
taken this stance. A similar petition had been sent to the New York
Legislature in 1947, signed by approximately 1,000 New York physicians. Roman Catholic
religious leaders criticized the petition, saying that such a bill
would "legalize a suicide-murder pact" and a "rationalization of the
fifth commandment of God, 'Thou Shalt Not Kill.'" The Right Reverend Robert E. McCormick stated that
"The ultimate object of the
Euthanasia Society is based on the Totalitarian principle that the state
is supreme and that the individual does not have the right to live if
his continuance in life is a burden or hindrance to the state. The Nazis
followed this principle and compulsory Euthanasia was practiced as a
part of their program during the recent war. We American citizens of New
York State must ask ourselves this question: 'Are we going to finish
Hitler's job?'"
The petition brought tensions between the American Euthanasia Society
and the Catholic Church to a head that contributed to a climate of
anti-Catholic sentiment generally, regarding issues such as birth
control, eugenics, and population control. However, the petition did not
result in any legal changes.
Euthanasia debate
Historically, the euthanasia debate has tended to focus on a number of key concerns. According to euthanasia opponent Ezekiel Emanuel, proponents of euthanasia have presented four main arguments: a) that people have a right to self-determination,
and thus should be allowed to choose their own fate; b) assisting a
subject to die might be a better choice than requiring that they
continue to suffer; c) the distinction between passive euthanasia, which
is often permitted, and active euthanasia, which is not substantive (or
that the underlying principle–the doctrine of double effect–is
unreasonable or unsound); and d) permitting euthanasia will not
necessarily lead to unacceptable consequences. Pro-euthanasia activists
often point to countries like the Netherlands and Belgium, and states like Oregon, where euthanasia has been legalized, to argue that it is mostly unproblematic.
Similarly, Emanuel argues that there are four major arguments
presented by opponents of euthanasia: a) not all deaths are painful; b)
alternatives, such as cessation of active treatment, combined with the
use of effective pain relief, are available; c) the distinction between
active and passive euthanasia is morally significant; and d) legalising
euthanasia will place society on a slippery slope, which will lead to unacceptable consequences. In fact, in Oregon,
in 2013, pain wasn't one of the top five reasons people sought
euthanasia. Top reasons were a loss of dignity, and a fear of burdening
others.
In the United States in 2013, 47% nationwide supported
doctor-assisted suicide. This included 32% of Latinos, 29% of
African-Americans, and almost nobody with disabilities.
A 2015 Populus
poll in the United Kingdom found broad public support for assisted
dying. 82% of people supported the introduction of assisted dying laws,
including 86% of people with disabilities.
Legal status
West's Encyclopedia of American Law states that "a 'mercy killing' or euthanasia is generally considered to be a criminal homicide" and is normally used as a synonym of homicide committed at a request made by the patient.
The judicial sense of the term "homicide" includes any intervention undertaken with the express intention of ending a life, even to relieve intractable suffering. Not all homicide is unlawful. Two designations of homicide that carry no criminal punishment are justifiable and excusable homicide.
In most countries this is not the status of euthanasia. The term
"euthanasia" is usually confined to the active variety; the University
of Washington website states that "euthanasia generally means that the
physician would act directly, for instance by giving a lethal injection,
to end the patient's life". Physician-assisted suicide is thus not classified as euthanasia by the US State of Oregon, where it is legal under the Oregon Death with Dignity Act, and despite its name, it is not legally classified as suicide either.
Unlike physician-assisted suicide, withholding or withdrawing
life-sustaining treatments with patient consent (voluntary) is almost
unanimously considered, at least in the United States, to be legal. The use of pain medication to relieve suffering, even if it hastens death, has been held as legal in several court decisions.
Some governments around the world have legalized voluntary
euthanasia but most commonly it is still considered to be criminal
homicide. In the Netherlands and Belgium, where euthanasia has been
legalized, it still remains homicide although it is not prosecuted and
not punishable if the perpetrator (the doctor) meets certain legal
conditions.
In a historic judgment, the Supreme court of India legalized
passive euthanasia. The apex court remarked in the judgment that the
Constitution of India values liberty, dignity, autonomy, and privacy. A
bench headed by Chief Justice Dipak Misra delivered a unanimous
judgment.
Physician sentiment
A 2010 survey in the United States of more than 10,000 physicians
found that 16.3% of physicians would consider halting life-sustaining
therapy because the family demanded it, even if they believed that it
was premature. Approximately 54.5% would not, and the remaining 29.2%
responded "it depends".
The study also found that 45.8% of physicians agreed that
physician-assisted suicide should be allowed in some cases; 40.7% did
not, and the remaining 13.5% felt it depended.
In the United Kingdom, the assisted dying campaign group Dignity in Dying cites research in which 54% of General Practitioners support or are neutral towards a law change on assisted dying. Similarly, a 2017 Doctors.net.uk poll reported in the British Medical Journal stated that 55% of doctors believe assisted dying, in defined circumstances, should be legalised in the UK.
Religious views
Christianity
Broadly against
The Roman Catholic Church strongly opposes and condemns euthanasia
and assisted suicide as morally wrong. It states that, "intentional
euthanasia, whatever its forms or motives, is murder. It is gravely
contrary to the dignity of the human person and to the respect due to
the living God, his Creator". Because of this, the practice is
unacceptable within the Church. The Orthodox Church in America,
along with other Eastern Orthodox Churches, also opposes euthanasia
stating that it must be condemned as murder stating that, "Euthanasia is
the deliberate cessation to end human life."
Many non-Catholic churches in the United States take a stance
against euthanasia. Among Protestant denominations, the Episcopal Church
passed a resolution in 1991 opposing euthanasia and assisted suicide
stating that it is "morally wrong and unacceptable to take a human life
to relieve the suffering caused by incurable illnesses." Other Protestant churches which oppose euthanasia include:
The Church of England
accepts passive euthanasia under some circumstances, but is strongly
against active euthanasia, and has led opposition against recent attempt
to legalise it. The United Church of Canada
accepts passive euthanasia under some circumstances, but is in general
against active euthanasia, with growing acceptance now that active
euthanasia has been partly legalised in Canada.
Islam
Euthanasia is a complex issue in Islamic theology; however, in general it is considered contrary to Islamic law and holy texts. Among interpretations of the Koran and Hadith,
the early termination of life is a crime, be it by suicide or helping
one commit suicide. The various positions on the cessation of medical
treatment are mixed and considered a different class of action than
direct termination of life, especially if the patient is suffering.
Suicide and euthanasia are both crimes in almost all Muslim majority countries.
Judaism
There is much debate on the topic of euthanasia in Judaic theology,
ethics, and general opinion (especially in Israel and the United
States). Passive euthanasia was declared legal by Israel's highest court
under certain conditions and has reached some level of acceptance.
Active euthanasia remains illegal, however the topic is actively under
debate with no clear consensus through legal, ethical, theological and
spiritual perspectives.
