Death and Dying

Question 1

Doka (2013), study of dying

Answer 1

despite many ppl associating historical roots of study of dying w Kübler-Ross’ epochal book On Death and Dying (1969), roots of field are earlier

While the study of grief abounds with exciting ideas and the hospice movement has expanded exponentially, the study of the dying process has been relatively neglected

Question 2

Lindemann (1944), study of grief reactions

Answer 2

introduced the concept of anticipatory grief

Question 3

Glaser and Strauss, Awareness of Dying (1965) (Doka’s account)

Answer 3

studied what dying people knew or suspected about their impending deaths

(in that period, general practice was not to discuss
death with individuals who were dying)

G+S documented that
dying individuals experienced four different awareness contexts

1. closed awareness , the dying person had no inking of his or her impending death.
   This context was unstable and unlikely to last long as dying individuals began to respond to both external and internal cues
2. suspected awareness, often trying to test their suspicions with medical staff or family.
3. mutual pretense — the most common. Patients and family were aware of the impending death, but to protect the other each person pretended
   that the patient would recover.
4. open awareness—
   patients and family were aware of and could discuss the possibility of death.

This work played significant role in questioning silence that had surrounded the dying process.

Question 4

Sudnow, Passing On: The Social Organization of Dying (1967)

Answer 4

ethnographic account of dying in two hospitals.

one of his most enduring contributions was the introduction of the concept of social death . Social death referred to his observed phenomenon that family and staff often treated many comatose patients, though technically living, as if they were dead.

Question 5

Doka (2013), Saunders

Answer 5

emphasized that dying was not simply a biomedical or physical event but also had psychosocial, familial, and spiritual implications. Care of the dying needed to be holistic and centered on the ill person and his or her family as the unit of care

St. Christopher’s tried to create a homelike atmosphere that sought a holistic, family-centered way to allow dying persons to live life as fully as possible

Question 6

Doka (2013), success of the hospice

Answer 6

The holistic philosophy of hospice has permeated much of medicine now—at least in terms of a recognition that a patient’s quality of life means meeting not only physical needs but psychological, social, and spiritual needs as well.

Moreover, the success of hospice has led others to seriously question how well the medical system generally meets the needs of those who are dying as a result of multiple serious chronic illnesses (Myers & Lynn, 2001).

Question 7

Doka (2013), first modern US hospice

Answer 7

Hospice Inc. outside of New Haven, CT, in 1974

Question 8

Doka (2013), William Lamers and US hospice care

Answer 8

a founder of a hospice in Marin County, CA

home care model of hospice

quickly spread throughout the United States sponsored by a range of groups from churches and interfaith groups to junior leagues. Hospice then took a very different cast in the United States compared to England

Question 9

Connor, 1998, US model of hospice care

Answer 9

hospices primarily offered home care and heavily stressed psychosocial care and the use
of volunteers

Question 10

Balfour Mount, Canadian physician, having visited St C’s

Answer 10

When he returned to the Royal Victoria Hospital in Montreal, Canada, he pioneered the development of a hospital-based palliative care model.

coined term ‘palliative care’

Question 11

Saunders and Kastenbaum (1999), growth of hospice = reaction to number of trends

Answer 11

1. technology-driven medicine focused on cure, seemingly abandoning those who were no longer responsive to treatment.
2. hospice resonated with two other themes of the era-consumerism and return to nature.

Question 12

Doka (2013), consequences of holistic nature of hospice care

Answer 12

led to a range of additional treatment modalities including bodywork, acupuncture, and expressive therapies to provide palliation

Question 13

Kübler-Ross, On Death and Dying (1969), (Doka’s account)

Answer 13

spoke of a “natural death”

5 stages of dying:
denial, anger, bargaining, depression, and acceptance

plea for humanistic care of dying patients

encourages ppl to talk to dying persons

Question 14

Doka (2013), issues w K-R’s work

Answer 14

While Kübler-Ross insisted that the stage theory was not to be understood literally or linearly, the book clearly offers an impression of linear stages.

As such, individual differences and the diverse ways that persons cope are often ignored

unclear whether book descriptive of the stages or prescriptive - ppl shld be moved through them

Question 15

Weisman (1972),denial

Answer 15

denial and acceptance are far more complicated than Kübler-Ross perceived.

orders of denial

patients might deny symptoms, diagnosis, or impending death

denial is not always negative. It allows patients to participate in therapy and sustain hope

middle knowledge - patients drift in and out of denial

Question 16

Fulton (1987), anticipatory grief (Doka’s account)

Answer 16

writing at a time when many clinicians attempted to “encourage” family members to experience anticipatory grief under the assumption that the acknowledgement and processing of the grief prior to the loss would mitigate grief experienced after the death

Fulton - this = “hydrostatic” perspective of grief—indicating a zero-sum notion of grief, that is, that there is just so much grief or tears that can be expended

Question 17

Rando (2000), anticipatory mourning (Doka’s account)

Answer 17

Anticipatory grief refers to a reaction while anticipatory
mourning is inclusive concept referring not only to reactions experienced
but also the intrapsychic processes that one uses to adapt to and cope with life-limiting illness.

the concept refers not only to the grief generated by
the possibility of future loss but primarily as a reaction to the losses currently experienced in the course of the illness.

The patient is not the only person to incur these losses. Family members and even professional caregivers may experience these

Rando’s reformulation frees the concept from much of the
earlier misconceptions that proved problematic.

Question 18

Worden, Grief Counseling nad Grief Therapy (1982) (Doka’s account)

Answer 18

paradigm shift in the way we understand mourning

not linear

mourning = 4 tasks

Question 19

Corr (1992), task-based approach to mourning

Answer 19

Implicit in the concept of tasks was an inherent assumption of individuality and autonomy not often seen in stage models

4 tasks:

physical - satisfy bodily needs and to minimize physical distress in ways that are consistent with other values.

psychological - maximize psychological security, autonomy, and richness

social - sustain and enhance those interpersonal attachments that are significant to the person concerned and to sustain selected interactions with social groups within society or with society itself.

spiritual - address issues of meaningfulness, connectedness, and transcendence and, in doing so, to foster hope.

Question 20

Doka (1993, 1995), life-threatening illness as phases

Answer 20

not all phases would appear in any given illness

prediagnostic phase - hlth seeking

acute phase - crisis period surrounding diagnosis of life-threatening illness

chronic phase - individ struggles w the disease and treatment

recovery phase - individuals do not simply go back to the life experienced before illness. They still have to adapt to the aftereffects, anxieties

terminal phase - adapting to the inevitability of impending death as treatment becomes palliative

At each phase, individuals have to adapt to a series of tasks. These tasks derive from four general or global tasks - physical, psychological, social, spiritual

Question 21

Doka (2013), models of mourning/ dying

Answer 21

have not been widely applied

yet, represent a possible direction as we strive to develop new approaches and models of the dying process.

Question 22

Doka (2013), 4 leading causes of death in US in recent yrs

Answer 22

cardiovascular diseases,

cancer,

cerebrovascular diseases,

respiratory diseases

Question 23

Doka (2013), end of life in recent yrs

Answer 23

not unusual that many patients will have multiple chronic conditions

increases complexity of med management

Question 24

Doka (2013), concurrent care

Answer 24

medical treatment where palliative care is offered concurrently with life-extending treatment

rising interest in this

Question 25

Kübler-Ross (1975), Death: The Final Stage of Growth

Answer 25

accepting finiteness of life allows us to more fully live life - discarding the external roles and petty concerns that are essentially meaningless.

Dying persons are our teachers

Question 26

Byock (1997), Dying Well: The Prospect for Growth at the End-of-Life

Answer 26

once a dying patient is freed from pain, that person retains the human potential to grow and the possibility to use his or her remaining time to express love, finish significant and meaningful tasks, and reconcile with others

Question 27

Doka (2013), key caution with theories of dying

Answer 27

models are possibilities—possibilities to be
embraced by the dying person.

They become a danger when others, whether family members or health professionals, see it as their goal to induce the dying person to achieve such possibilities.

Question 28

Dominiczak (2013), Maggie Jencks,

Answer 28

writer, gardener, and designer who died in 1995

idea to create space where ppl cld deal w issues arising from cancer in comfort

small support centre

domesticity about the space, and many interiors are centered around a kitchen

world-class architects e.g. Gehry, designer of Guggenheim Bilbao - designed Maggie’s Dundee

Maggie’s Centres create an interface with institutionalized
healthcare—a kind of buffer surroundings (334)
for people who have to deal with technicalized
healthcare because of cancer.

convey the message that illness does not need to mean separation from the cultural mainstream.

Question 29

Charles Jencks on Maggie’s Centres

Answer 29

hybrid buildings

“like a house which is not a home, a collective
hospital which is not an institution, a church which is
not religious, and an art gallery which is not a museum.”

Question 30

Clark (2007), clinical oncology 1959

Answer 30

emerging specialty

focus on cure not care

Question 31

Clark (2007), recent cancer reforms

Answer 31

1999, British government appointed national director to reform and improve cancer services.

cancer tsar was Mike Richards, a breast cancer specialist and professor of palliative medicine.

He built on the work of the Calman–Hine reportand the UK Government’s Cancer Planto implement programme of reform to cancer services, giving core place to palliative care

with other groups, is also extending to a national strategy for end-of-life care

palliative care has moved from margins to centre of oncology

Question 32

Clark (2007), oncology and palliative care

Answer 32

worldwide development of palliative care is deeply rooted in the specialty of oncology, which has shaped the conceptual model of palliative care, produced some of its major leaders and innovators

Question 33

Clark (2007), rising concerns about med neglect of patients dying from cancer

Answer 33

1950s, shift from anecdotal accounts to systematic findings

Margaret Bailey’s survey of patients with lung cancer, done at the Brompton and Royal Marsden Hospitals,research into public opinion on cancer,14and an enquiry into delayed help-seeking by patients with cancer, which noted that: “the fact of palliative treatment is not understood, and hospitals appear to be trying to cure all their patients and failing in a high proportion of cases”

Glaser and Strauss

Anne Cartwright’s 1969 surveyof 960 bereaved relatives who were asked about the experiences of the deceased person in the last year of life.

Question 34

Clark (2007), Saunders and patient narrative

Answer 34

writings relied heavily on individual patient experiences

reported on a series of 340 cases in 1960

rose to 1100 by 1967

articulation of the relation between physical and mental suffering, seen in almost dialectical terms, each capable of affecting the other - ‘total pain’
includes physical symptoms, mental distress, social problems, and emotional difficulties

Question 35

Clark (2007), Saunders and pain management

Answer 35

hard-headed approach

“constant pain needs constant control”

argued for analgesics to be used in a method of regular giving, which would ensure that pain was prevented in advance, rather than alleviated once it had become established, and that they should be used progressively, from mild to moderate to strong

lifelong opponent of euthanasia, she pressed for proper relief of suffering without the hastening of death.

Question 36

Opening of world’s first modern hospice

Answer 36

St Christopher’s, 1967

Question 37

Clark (2007), St C’s research

Answer 37

Brompton Cocktail mixture was scrutinised in detail by Robert Twycross, a research fellow at St Christopher’s Hospice, in what became a series of classic studies and the first of their kind to be undertaken in the hospice setting. He concluded that the Brompton Cocktail was no more than a traditional way of administering oral morphine to patients with cancer who were in pain, and he urged that its use should be quietly abandoned in favour of simpler approaches of administering morphine.

Question 38

Clark (2007), hospice efficacy

Answer 38

Parkes’ initial study of efficacy of hospice at relieving end of life pain was repeated 10 years later as part of a continued assessment of the work of the hospice. Although pain and symptom control improved in the hospital setting over time, psychosocial needs and continuity of care continued to be better approached in the hospice

Question 39

Clark (2007), hospice expansion

Answer 39

golden period of growth following St C, peaking in 1980s w about ten new hospice were opened per yr

Some of these hospices were located and funded within the National Health Service (NHS)—eg, Oxford, Southampton, Dundee, and Aberdeen—where their ability to have a wider effect on care services was heightened.

Question 40

Clark (2007), hospital support teams UK

Answer 40

pioneered at St Thomas’s Hosp, London, 1976

their subsequent development was given impetus by departmental guidelines published in 1987.

Between 1982 and 1996 the number of hospitals with either a multidisciplinary palliative care team or a specialist palliative care clinical nurse grew from five to 275.

Question 41

Clark (2007), Macmillan

Answer 41

founded 1911

mid-1970s underwent a period of unprecedented expansion, becoming increasingly involved with palliative care and supporting training programmes, specialist professional posts, and academic positions as well as capital and service developments.

Recently, the organisation has switched its focus to more direct support for people affected by cancer and indicated this in a change of name to Macmillan Cancer Support.

Question 42

Clark (2007), Marie Curie Memorial Foundation

Answer 42

estab 1948

went on to create nursing homes, a domiciliary nursing service for patients with cancer, and a laboratory-based scientific research programme.

In the 1980s the Marie Curie nursing homes underwent a transition to specialist palliative care centres and the charity supported a wide range of educational activities, and some research activities, in palliative care.

more recently, closely assoc w devel of national end-of-life strategy and engaged in lobbying for new legislation to support palliative care

Question 43

Clark (2007), dissemination of hospice ideals into other settings

Answer 43

from the 1970s, so that by the mid-1990s there were:

• over 1000 specialist Macmillan nurses working in palliative care in the UK
• about 400 home-care teams, and over 200 day-care and 200 hospital-based services
• 5000 Marie Curie nurses providing care in the home

2004:

-196 inpatient units in the UK, consisting of 2730 beds, just 19% of which were within the NHS, with the remainder under the governance of independent hospices.

Question 44

Clark (2007), specialty of palliative med

Answer 44

established as subspecialty of general med in 1987

1995, specialty formally approved in UK

Question 45

Clark (2007), cancer pain before 1970s

Answer 45

received little international attention

regarded as an inevitable, not fully controllable, consequence of the disease.

Question 46

Clark (2007), first international Symposium on Cancer Pain

Answer 46

Venice, 1978

Research presented at this and subsequent conferences suggested that physicians had the means to relieve even severe cancer pain and that the principal factors contributing to poor management of pain were legal barriers against opioid use and a lack of knowledge in the subject

Question 47

Clark (2007), issue of cancer pain tackled from two directions

Answer 47

• hospice movement
• work by Patrick Wall, inventor of the gate theory of pain and an early pioneer of modern pain medicine, and the International Association for the Study of Pain.

Question 48

WHO global Programme for Cancer Pain Relief

Answer 48

1982

three-step analgesic ladder with the use of adjuvant treatments, incorporating the use of strong opioids as the third step. (hospice approach)

Question 49

Clark (2007), impact of WHO international initiative to remove legal sanctions against opioid importation and use

Answer 49

relyed on national coordinating centres to organise professional education and disseminate the core principles of the so-called pain ladder

use of opioids rose substantially between 1984 and 1993 in ten industrialised countries, but showed much smaller increases throughout the rest of the world

Question 50

First International Congress on the Care of the Terminally Ill

Answer 50

1976, Montreal

organised every 2 years thereafter by Balfour Mount and colleagues.

Question 51

Clark (2007), International hospice movement

Answer 51

1980, International Hospice Institute - formed by Josefina Magno

1999, this became International Assoc for Hospice and Palliatice Care

1988, European Association for Palliative Care

1990, Hospice Information Service at St Christopher’s Hospice in London began its international newsletter

1999, Eastern and Central European Palliative Task Force

1999, Foundation for Hospices in sub-Saharan Africa was established to serve hospice developments in the region

2000, Latin American Association of Palliative Care

2001, Asia Pacific Hospice Palliative Care Network

2002, UK Forum for Hospice and Palliative Care Worldwide

2003, African Association for Palliative Care

Question 52

Clark (2007), Hospice services USA

Answer 52

3000 providers by end of 20th C

much less contact with oncology and a much greater focus on non-cancer patients than in the UK

idea of hospital teams and inpatient hospice beds much less develd

1982, achievement of funding recognition for hospices under US Medicare programme

Question 53

Clark (2007), palliative care services China

Answer 53

Protocols for the WHO three-step analgesic ladder were first introduced into China in 1991 and, as a result, by 2002 there were said to be hundreds of palliative care services in urban areas

Question 54

Clark (2007), global cancer burden

Answer 54

about a million Africans develop cancer every year

global burden of cancer will increase from ten million to 24 million during the next 50 years, 17 million of whom will be in developing countries.

Question 55

Clark (2007), palliative care services Africa

Answer 55

no identified hospice or palliative care activity in 21 African countries

Question 56

Clark (2007), Eastern Europe

Answer 56

in a region of over 400 million people there were only 467 palliative care services in 2002, more than half of which were in one country, Poland.

Question 57

Council of Europe set of European guidelines on palliative care

Answer 57

2003

described this care as an essential and basic service for the whole population.

Question 58

Clark (2007), 2006 study on global palliative care

Answer 58

115 of the world’s 234 countries have established one or more hospice–palliative care services.

However, only 35 (15%) of the 234 countries have achieved a measure of integration with other mainstream service providers together with wider policy recognition

Question 59

Clark (2007), how common is cancer pain?

Answer 59

common

two-thirds of those with advanced disease, and a third of those undergoing active treatment, suffer with this pain.

Question 60

Clark (2007), how important are cancer and palliative care on global hlth agenda?

Answer 60

low priorities

Question 61

WHO definition of palliative care 2002

Answer 61

“palliative care is 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”

Question 62

Heathcote (2006), Maggie’s Centres ethos

Answer 62

attempt to lift the soul not only through the sympathetic professional advice and listening of the trained oncology nurses who staff them but through architecture, through the redemptive power of space, light, and sculptural form.

place for people to help themselves, tho expert help at hand

antidote to the traditional hospital in which the relationship is governed by an (inevitably) uneven distribution of knowledge and power

Question 63

first Maggie’s centre

Answer 63

opened in the grounds of the Western General Hospital in
Edinburgh, 1996

Maggie started the fundraising for this

Question 64

Heathcote (2006), Maggie’s centre design

Answer 64

no front desk, it is intended to

be accessible and informal, with no appointments necessary.

Question 65

Heathcote (2006), history of using architecture as healing

Answer 65

From the exquisite hospitals of Renaissance Italy
to the powerful formality of Paris’s Invalides or Wren’s
Royal Hospital at Greenwich

Filarete’s exquisite Ospedale Maggiore in 15th century Milan

modernist masterpieces of Alvar Aalto’s Paimio Sanatorium and Berthold Lubetkin’s Finsbury Health Centre.

But these efforts remain the exceptions

Question 66

Walter (2003), shifting impressions of the ‘good death’

Answer 66

religion to med

local community in which everyone knew their script, to palliative care which encourages individuals to write own scripts for dying

dying in few days of infectious disease, to slow death of degenerative diseases of old age

Question 67

Walter (2003), variations in ‘gd death’ at historical moment

Answer 67

good death depends on one’s society and culture.
Norms for the good death therefore vary widely
within a multicultural society

One Hindu describes their practice: “The belief is that
you should die on the floor. Here a lot of people die in
hospitals and a lot of us families are very shy to ask for
what we want. We feel out of place”

Question 68

Walter (2003), most import factors in defining cultural norms about the ‘good death’

Answer 68

1. extent of secularisation
2. extent of individualism
3. how long typical death takes

Question 69

Walter (2003), death in highly religious society - adhering to one religion

Answer 69

death of any one member undermines the family, the community, and even (for individuals of a high social status) the entire society, so it is important that death is managed according to the required religious rites, for it is these rites that glue the group
together at precisely the time that it is most threatened

Question 70

Walter (2003), impact of state of religion in modern Western societies on attitudes towards deaths

Answer 70

1. Influence of Protestantism - founded on the belief that there is nothing the living can do to help the soul’s passage after death
2. most European socities now highly secular. Only aroound 40% believe in afterlife (75% of Irish and Americans tho). Modern social institutions presume this is the only life
3. religion = personal choice.

ultimate authority is not one’s community, but ‘what works for me’

Question 71

Walter (2003), role of British healthcare chaplaincy

Answer 71

increasingly sees its task
as helping patients to discover their own spirituality
and find their own path through illness or death

Question 72

Walter (2003), hospice movement and religion

Answer 72

in English speaking countries, see task = helping patients to discover own spirituality/ path to death

in many other countries hospices have more traditional religious practices around the deathbed.

Question 73

Walter (2003), individualism and palliative care

Answer 73

clear link between strong palliative care mvmnt and individualistic countries e.g. England, US

where fam takes precedence e.g. Italy, less easily rooted

Question 74

Walter (2003), what do advocates of both palliative care and euthanasia agree on?

Answer 74

the good death is one in which I make my own choices about my last days and months

Question 75

Walter (2003), individualistic societies and the bad death

Answer 75

bad death = no autonomy

Question 76

Walter (2003), the main question about how to die well today

Answer 76

how to live for a long time knowing we are dying

Question 77

Walter (2003), BMJ, new art of dying in Britain(?)

Answer 77

ready market has developed for autobiographical books,
newspaper columns, and television programmes
about dying slowly, informing a perplexed society what it is like to die of cancer or care for someone with Alzheimer’s

‘new art of dying’ - hospices,
journalists, and dying people themselves writing the
scripts for a new heroism in the face of the old Grim Reaper

Question 78

Walter (2003), result of ‘ultra-individualised, ultra-globalised world’

Answer 78

patients are increasingly finding their own paths, in
the company of other patients, whom they meet
through the internet and self help groups

Question 79

Walter (2003), BACUP (the British Association of Cancer United Patients)

Answer 79

attempts to combine medical knowledge with that of patients and their families: “I finally met a fellow young patient with ovarian cancer. We shared our experiences . . . Through this, I realised that
other patients could give me something unique which I could not obtain from my doctors or nurses, however caring.

Question 80

Illlich (1974), Lancet, removal of autonomy

Answer 80

By transforming pain, illness, and death from a personal challenge into a technical problem, medical practice expropriates the potential of people to deal with their human condition in an autonomous way and becomes the source of a new kind of un-health.

Question 81

Illlich (1974), culture, meaning and health

Answer 81

Each culture set the myth, the rituals, the taboos, and the ethical standards needed to deal with the fragility of life—to explain the reason for pain, the dignity of the sick, and the role of dying or death.

Precisely because each culture provides a mode for suffering, culture is a particular form of health. The act of suffering is shaped by culture into a question which can be stated and shared.

Medical civilisation replaces the culturally determined competence in suffering with a growing demand by each individual for the institutional management of his pain. A myriad of different feelings, each expressing some kind of
fortitude, are homogenised into the political pressure of anaesthesia consumers. Pain becomes an item on a list of complaints. As a result, a new kind of horror emerges. Conceptually it is still pain, but the impact on our emotions of this valueless, opaque, and impersonal hurt is something quite new.

By becoming unnecessary, pain has become unbearable

Question 82

Illlich (1974), pain and suffering

Answer 82

Only the recovery of the will and ability to suffer can restore health into pain.

Question 83

Illlich (1974), the ‘natural death’

Answer 83

The idea that natural death should come only in healthy old age appeared only in the 18th century as a classspecific phenomenon of the bourgeois.

Producing ‘‘natural death’’ for all men is at the point of
becoming an ultimate justification for social control.

Question 84

Illlich (1974), denial of death

Answer 84

We cannot fully understand contemporary social organisation unless we see in it a multi-faceted exorcism of all forms of evil death. Our major institutions constitute a gigantic defence programme waged on behalf of ‘‘humanity’’ against
all those people who can be associated with what is currently conceived of as death-dealing social injustice

Question 85

Illlich (1974), industrialisation, medicine and ill health

Answer 85

Rising irreparable damage accompanies industrial expansion in all sectors

Medical Nemesis =
Aspect of an even more general phenomenon which I have called industrial Nemesis, the backlash of institutionally structured
industrial hubris. This hubris consists of a disregard for the boundaries within which the human phenomenon remains viable.

in medicine these damages appear as iatrogenesis. Iatrogenesis can be direct, when pain, sickness,
and death result from medical care; or it can be indirect, when health policies reinforce an industrial Organisation which generates ill-health

Question 86

Illlich (1974), what is ‘health’?

Answer 86

Health designates a process of adaptation. It is not the result of instinct, but of autonomous and live reaction to an experienced reality

To the degree to which man becomes dependent on the management of his intimacy he renounces his autonomy and his health must decline

society which can reduce professional intervention to the minimum will provide the best conditions for health.

Question 87

Clark (2002), med services and death in present

Answer 87

Palliative care has encouraged medicine to be gentler in its acceptance of death, yet medical services in general continue to regard death as something to be resisted

Question 88

Clark (2002), medicalisation

Answer 88

have grown used to speaking of medicalisation as a byword for all things negative about the influence of modern medicine on life and society

has become synonymous with the sense of a profession reaching too far

Question 89

Clark (2002), Saunders’ significance

Answer 89

‘the outstanding innovator in the field’

Question 90

Clark (2002), developments parallel to palliative care that have redoubled efforts against its ethos

Answer 90

• futile treatments that either have a low probability of having a beneficial effect
• One New York hospital found that among a group of elderly patients with advanced cancer or dementia, overall 47% received invasive non palliative treatments during their final few days
• In the United Kingdom almost a quarter of occupied hospital bed days are taken up by patients who are in the last year of life and some 60% of all deaths occur there.

Question 91

Clark (2002), newly formed specialty of palliative care has concentrated on two distinct issues

Answer 91

• impetus to move palliative care further upstream in the disease progression, seeking integration with curative and rehabilitation therapies and shifting the focus beyond terminal care
• growing interest in extending the benefits of palliative care to those with diseases other than cancer

Question 92

Clark (2002), palliative care - modernisers vs traditionalists

Answer 92

-Modernisers claim that specialisation, integration, and the development of an “evidence based” model of practice and organisation are crucial to long term viability.

-Traditionalists - mourn the loss of early ideals and regret the new emphasis on physical symptoms at the expense of psychosocial and spiritual concerns.
Some have claimed dark forces of medicalisation and “routinisation” taking hold.
Some even claim that the putative “holism” of palliative care philosophy masks a new, more subtle form of surveillance of dying and bereaved people in modern society

Question 93

Clark (2002), palliative med as postmodern specialty?

Answer 93

relates to stage of patient’s condition, rather than its pathology

lacks a specific disease, bodily organ, or life stage to call its own.

For this reason it has been drawn towards a model that overarches the course of the illness and is unified by quality of life goals.

Question 94

Clark (2002), issue w adoption of ‘quality of life’ as a goal

Answer 94

conceals many problems, several of which are structural, economic, and social and lie beyond the immediate influence of clinical medicine

Question 95

Clark (2002), shld attending to suffering be overarching goal of palliative med?

Answer 95

more compatible with the wider goals of medicine and might help to address problems about futility and overtreatment

this has raised fears of selling out to a medical model in which suffering is only a problem to be solved and specialists in palliative care become symptomatologists, in just another specialty

Question 96

Clark (2002), medicalisation of palliative care?

Answer 96

As the specialty develops, its medical attention tends to focus on pain and symptom management as a bounded set of problems within the relief of suffering. Here may lie the charge of creeping medicalisation

Yet it is in this biomedical area of palliative care that measurable and striking successes are to be found in the use of pain relieving and symptom controlling technologies. A recent study claims, for example, that in the palliative care unit of one Australian teaching hospital, of 24 problems listed, all but two (depression and delirium) were physical rather than psychosocial or spiritual in type. Not surprisingly, some consider this symptom analysis and management to lie at the heart of the specialty.

what we are seeing is the medicalisation of palliative care, a specialty that opens up a space somewhere between the hope of cure and the acceptance of death.

more appropriate to view medicalisation as the expected rather than unintended outcome of the growth of palliative care, especially in the British context, where medical pioneers are central to its history.

Question 97

Clark (2002), ‘good death’ and palliative care

Answer 97

has been a goal from the outside

But the shift from “terminal” to “palliative” care has brought about a diminished emphasis on the good death

Shift (907) ‘upstream’ to earlier stages in the disease process—and the inclusion of chronic, life limiting conditions— promotes the rhetoric of quality of life versus a good death

Question 98

Morris (1998), Illness and culture in the postmodern age

Answer 98

consequences of this continuing modernist deconstruction of mortality have brought us to the current postmodernist impasse in which dying patients are trapped between two evils:

• a runaway medical technology of ventilators, surgeries, and organ transplants that can keep bodies alive indefinitely
• understandable but reckless public clamor for physician-assisted suicide as the only alternative to such ignominious physician-assisted suffering.

Question 99

Field, Wee (2002), palliative care in med school

Answer 99

All 24 programmes reported that they directly addressed the topic of palliative care in their curriculum for all students

main changes since 1994 involve an increase in the use of role-play and a decrease in the use of simulated patients in favour of using dying patients as part of the teaching process.

Nineteen of the 23 schools
now use hospice visits as part of their education

number of teaching hours reported varied considerably - between 6 and 100

provision of teaching has moved away from the academic disciplines
of psychology and sociology towards those involved in the practicalities of caring for people who are dying since 1993

significant increase reported for formal teaching about aspects of physical therapy may be related to the definition of the specialty and the changing emphasis on symptom management and earlier involvement in the disease process.

This change reflects contemporary views on the balance between physical therapies and other aspects of death and dying within the palliative care community

Question 100

Field, Wee (2002), overview of shift in med ed towards palliative care

Answer 100

1980, active hospice movement campaigner Professor Wilkes’ report for the Standing Medical Advisory Committee recommended for the first time that undergraduate medical curricula should include palliative care.

Thus, by 2000, all of Britain’s 23 clinical medical schools included some curriculum coverage of this

Question 101

Humphreys (2001), first institutional provision in the British Isles specially for the dying poor

Answer 101

represented an attempt by small, disparate groups of people to hold on to a tradition of pastoral care which they felt was being progressively eroded by wider social, medical and religious changes.

Victorian era

1879-1905

Before this, institutional care of the dying, where it existed, had only featured as part of broader programme
of care, which included chronic and incurable patients, most of whom had indeterminate prognoses.

these new institutions created necessary conditions for emergence of modern hospice movement 1960s (Saunders’ experience working in St Luke’s and St Joseph’s)

Question 102

Humphreys (2001), first homes for the dying

Answer 102

only two in British Isles called themselves hospices

Our Lady’s Hospice for the Dying, Dublin est 1879.
Was with this that use of term ‘hospice’ came to be assoc specifically w care of dying in Br Isles

these homes not intended for the ‘undeserving’ poor - felt that workhouse infirmaries provided suitable accommodation for this group

Question 103

Humphreys (2001), Christianity’s influence

Answer 103

hospices grew out of the early Christian tradition of care for the sick and dying.

religious basis part of broader religious and philanthropic trends, particularly the churches’ concern to reach the working classes, many of whom were held to be indifferent to religion

homes for dying = first and foremost religious institutions: four were run by religious orders while the other two rested on solid religious underpinnings

Body and soul were viewed as inseparable and moral and spiritual aid were felt to be as important as physical care and material assistance.

Question 104

Humphreys (2001), Provision of medical care for the dying in late Victorian England

Answer 104

structured along the lines of class and income

wealthy - mostly nursed at home

Officially incurables and the dying were debarred from the voluntary hospitals, although in practice many patients died before they could be discharged.

State was virtually the sole provider of institutional care for incurable and dying persons.

late 1860s and 1870s, Poor Law infirmaries had been established to care for sick
paupers - undeserving poor

Level of care provided by these infirmaries = minimal. Overcrowding, neglect

Question 105

Thomas Laqueur, pauper funerals

Answer 105

ame to signify their absolute exclusion from the social body.

Question 106

advertisement produced by the Sisters at St Joseph’s

Answer 106

sordid privations and the extreme misery which
results from the dire poverty, overcrowding, lack of sympathy and honour,
lack of honesty and morals?… They die in conditions worse than the most savage of savages have ever yet had to face

Question 107

Humphreys (2001), late 19th C cultural attitudes

Answer 107

growing consensus that physical suffering should
be alleviated before attending to an individual’s spiritual needs

declining belief in the doctrine of hell and the relevancy of salvation undermined the need to minister to the soul

Question 108

Humphreys (2001), care for the dying in early dedicated institutional setting

Answer 108

St Joseph’s Hospice - 12 beds
Hostel of God - 15
St Luke’s - 15

These homes confined to London - reflected each institution’s inward-looking approach - particularly the way in which spiritual care was provided.

nursing care at St Joseph’s and the Hostel of God was supplied primarily by the Sisters, with the help of a few lay nurses, but at St Luke’s the nurses were all lay personnel.

Each home relied on the services of honorary visiting physicians

Question 109

Jalland, 1996, religion (Humphreys’ account)

Answer 109

Evangelical movement, which affected all denominations, revived the Protestant ideal of the good death and reawakened an emphasis upon spiritual concerns.

During the second half of the
century, however, Evangelicalism began to decline in influence

the religious model of the good death which had emphasised spiritual
piety gave way gradually to a growing preoccupation with physical distress - the “Edwardian fear of dying uncomfortably”

Question 110

Humphreys (2001), two major weaknesses in Jalland’s argument

Answer 110

1. Issue of
   possible denominational variations on the ‘good death’ is only briefly addressed
2. does not adequately allow for the continued importance of spiritual issues in care of the dying

Question 111

Chaplain at the Hostel of God on physical suffering

Answer 111

It is always hard in sickness and pain to think of anything but one’s own discomfort and suffering

Question 112

Humphreys (2001), homes for dying and suffering

Answer 112

patients perceived as a being made up of three separate yet interrelated entities: the body, the mind and the soul.
The soul was ultimately afforded precedence because it alone was immortal.

However, attending to patients’ bodily and mental needs was felt to be a pre-requisite for addressing their spiritual wants (part of broader shift in thinking in late Victorian churches)

Pain and suffering accepted - believed to be part of God’s will

Also felt to play a crucial role in patients’ spiritual development

Sisters at the Hostel of God perceived suffering as “a token of love, and the one means, often and often, of drawing souls to the Fountain of all Love

Question 113

Humphreys (2001), the ‘good death’ at St Joseph’s

Answer 113

dependent upon the patient’s belief in the Catholic faith and reception into the Catholic Church

Ritual mediations, such as receiving the sacraments, kissing a crucifix and reciting the rosary, were a particularly important feature of the ‘holy’ death

Question 114

Humphreys (2001), second half of 19th C, Catholic church and death

Answer 114

second half of the nineteenth century witnessed an increase in the bona mors or ‘exercises for a happy death’ and a special Bona Mors confraternity existed, which aimed at promoting devotions ‘for a happy death’.

Question 115

Humphreys (2001), the ‘good death’ at St Luke’s

Answer 115

Faith in Jesus Christ as one’s personal Lord and Saviour was felt to be essential for achieving a good death, but the denominational route through which it was acquired was largely irrelevant

Far less credence was given to outward forms of faith; what mattered was being “able to rejoice in the assurance of sins forgiven”

Many features of the ‘respectable Christian death’ were rooted in the thinking of the Victorian and Edwardian Methodist Church which placed a strong
emphasis on the need for ‘personal conversion’.

Question 116

Saunders (2000), three founding principles of St C’s and worldwide movement

Answer 116

openness

mind together with heart

freedom of the spirit

(story of David Tasma, Polish Jew who died in 1948, given as inspiration for these)

Question 117

Saunders (2000), religious basis of hospice mvmnt

Answer 117

movement founded on the Judean–Christian ethic

Question 118

Saunders (2000), ethos

Answer 118

people should be helped not only to die peacefully, but to live until they die with their needs and their potential met as fully as possible

personal emphasis remains central to our work today

Question 119

Saunders (2000), research into earlier hospices

Answer 119

I learned of the early hospices and their values.

late 4th Century, a Roman matron, opened her home to pilgrims, the sick and the destitute as a Christian commitment - word ‘hospice’ for hospitality

Question 120

Saunders (2000), link w earlier hospices

Answer 120

much is owed to St. Luke’s Home for the Dying Poor, which was opened in 1893 by Dr. Howard Barrett.

Witnessed here from 1948 was the effective regular 4-hourly giving of oral morphine, balanced to each individual patient’s need

clinical research fellowship enabled me to introduce regular giving of analgesia and monitor pain and symptom control at that other early hospice, St. Joseph’s

The 7 years work there enabled me to lay the foundations of palliative care and raise the money to build St. Christopher’s Hospice,

Question 121

Saunders (2000), pain

Answer 121

using ‘total pain’ holistic approach will enable the dose of opioid to remain between each patient’s own effective and sedative levels while regular giving enables constant control of the almost invariably constant pain

Question 122

Saunders (2000), bereavement

Answer 122

Our new comprehensive system of bereavement follow-up began in 1971, ably led by Dr. Colin Murray-Parkes

He also found that effective, compassionate care of the last stages of life can bring lasting comfort to survivors even though nothing can take away the loss itself.

Question 123

Saunders (2000), influence of St C’s on global movement

Answer 123

By 1969 a stream of professionals had begun to arrive on sabbatical leave for varying periods of experience.

Question 124

Saunders (2000), basic principles

Answer 124

• Symptom controlcomes first
• multi-professional team
• Maximising the potentialthe patient and family still have for activity, relationship and reconciliation
• The patient and family must be theunit of care
• Spiritual needsmay be paramount with some patients and are far more prevalent than is commonly recognized or addressed. Each patient attempts to sing his own song in their own space.

Question 125

Saunders (2000), St. Christopher’s watchwords, since taken up widely

Answer 125

‘you matter because you are you and you matter to the last moment of your life. We will do all we can, not only to help you die peacefully, but also to live until you die’

Question 126

Hart, Sainsbury, Short (1998), ‘good death’ ideology

Answer 126

dominant

but has now become fragmented
and contested

Many writers locate the origins of the modern concept of the good death within the writings of the French historian Phillipe Arie`s

Question 127

Ariès (1974), ‘tamed death’

Answer 127

death known but not feared, when the rituals of dying and death were practised in ceremonial manner.

dying person acted as the manager of ceremonies,
presiding over his or her last days of life, conducting farewells, giving blessings
and seeking pardons, and approaching the end of life in ways he or she had witnessed since childhood.
This good death was a public event taking place in the dying person’s home with family, friends, fellow workers and members of the community present.

Question 128

Ariès (1974), ‘wild death’

Answer 128

that of modern society

hidden within institutions and managed by the doctor and the hospital team who strive to obtain from their patients an acceptable style of living while dying.

modern death = death that does not embarrass others nor evoke strong emotions but takes place privately and
secretly; a death that can be tolerated by the survivors

inhumane and solitary dying

Arie`s (1981) exhorts a return to the death we have lost

Question 129

Hart, Sainsbury, Short (1998), criticisms of Ariès

Answer 129

Norbert Elias (1985) has drawn attention to the implicit romanticism of Arie`s’ writings, others have criticized his methodology and emotional engagement in the subject (Small, 1997).

Question 130

Hart, Sainsbury, Short (1998), shifts outlined by Ariès which we can accept

Answer 130

social processes and events (of dying) were once spoken of and conducted more openly and freely, and that those who were dying and grieving in the past were far less isolated.

Question 131

Hart, Sainsbury, Short (1998), Glaser & Strauss, dying trajectory

Answer 131

image of the ‘good’
or ‘appropriate’ death in which all concerned had both the time for and quality
of interactions during the dying process to reach a state of open awareness.

Question 132

Hart, Sainsbury, Short (1998), Sudnow (1967), Passing on

Answer 132

ethnographic study of the social organization of ‘death work’ in the modern hospital context revealed the routinization of dying and death, with death hidden and obscured by staff pretences, and with the value of organizational efficiency held far higher than that of human dignity

The dying person’s autonomy and opportunities were overridden by the hospital staff and the organization of work

Question 133

Hart, Sainsbury, Short (1998), McNamara et al. (1994; 1995) investigated whether the good death ideal was compatible with the institutionalization of hospice care…

Answer 133

conflicts between the hospice ideal of the good death and the maintenance of the organization’s vested interests of cost effectiveness, administrative imperatives, and the routinization of care.

Study concluded that nurses and other health professionals were working hard to uphold the principles of the good death while at the same time acknowledging that such an ideal was difficult to attain. The good death concept was embraced by health caregivers as they
struggled to fashion the experiences and lives of their patients towards this ideal, yet at the same time the ideal was held with some ambivalence and with
interpersonal differences in definition and meaning.

Death was defined by
health caregivers as ‘good’ if there was awareness, acceptance and a preparation for death, and a peaceful, dignified dying. The good death was epitomised by the nurses’ comfort with events and interactions. Bad deaths were characterized
as a lack of acceptance of death by patients or patients’ families, or a failure to actively pursue fulfilment of living until the final stages of dying.

hospice ideology of the good death was contrasted by caregivers with the medical model’s perceived bad deaths; a good death was a victory to the hospice staff and for hospice ideology.

lives of dying people were shaped by caregivers to fit the good death hospice philosophy and expectations

Question 134

Hart, Sainsbury, Short (1998), Kellehear (1990), ‘good death’

Answer 134

5 features:

• awareness of dying
• adjustments to death
• preparations for death
• relinquishing of roles, responsibilities and duties
• farewells with others.

Using his interviews with 100 terminally ill people, Kellehear observed that this form of the good death exists in modern industrial cultures today.

set of culturally sanctioned and prescribed behaviours set in motion by the dying, through which their death is made more meaningful for all concerned and involved

good death, he concludes, is ‘good’ in two senses: it is good at the individual level in a psychological sense as it gives the dying person opportunities for order and control, and it is ‘good’ at the social level as it provides a series of rites for appropriate disengagement and the exercise of professional power and expertise, and thereby the creation of private profit. Thereby the social impact of death is controlled and channelled

Question 135

Hart, Sainsbury, Short (1998), Illich, social control

Answer 135

good death = socially approved death under compulsory care, with
rituals and rules that fight against dying in an unacceptable fashion. The
medicalization of dying and death has led to new levels of social contro

Question 136

Hart, Sainsbury, Short (1998), construction of stereotypes

Answer 136

gd death facils construction of stereotypes of ‘good’ and ‘bad’ patients - under hospital and hospice care

Question 137

Hart, Sainsbury, Short (1998), Kelly & May, 1982, bad patients

Answer 137

those who fail to conform, who deviate from normative behaviours and choices, and who fail to legitimate the
roles of their caregivers

Question 138

Hart, Sainsbury, Short (1998), Lawler’s (1991) Australian study of the way nurses manage the bodies of others

Answer 138

nurses feel frustration when a patient deviates from the dying trajectory, which is based almost entirely upon
the particular disease of the patient

saw themselves as helping to facilitate a good death

Question 139

Hart, Sainsbury, Short (1998), blurring of boundaries between hospice and hospital care

Answer 139

Hospital care givers and policy makers have learnt greatly from the principles and practices of caring for the dying in hospices.

Hospice care has also
been institutionalized and encroached upon by mainstream medicine, and
hospice staff have compromised founding ideals under pressures of bureaucratization and professionalization

Question 140

Hart, Sainsbury, Short (1998), Young & Cullen

1996

Answer 140

In the absence of wider social support, the family and family substitutes have become highly significant as buffers against dying without dignity, in isolation under routinized care

Question 141

Hart, Sainsbury, Short (1998), Bradbury (1996)

Answer 141

argues that the dominant medical model of good

death is used by professionals, and imposed upon the bereaved

Question 142

Hart, Sainsbury, Short (1998), Walter (1996), the postmodern death

Answer 142

choice and control now lie not so much with the individual; rather there is a process of negotiation and legitimation taking place between dying people and
those involved in their care.

Question 143

Hart, Sainsbury, Short (1998), Hunt 1994, constraints

Answer 143

choices of dying people are constrained within hospice/palliative care,
particularly by its opposition to requests to die not only where one chooses, but also how and when

Question 144

Clark (1998), crucial shift in orientation of Saunders’ vision evd in her correspondence after 1959

Answer 144

St Christopher’s came to be seen as a full-blown medical project, acting in the world, rather than as a sequestered religious community solely concerned with caring for the dying.

Increasingly, sense of a personal, individual calling is expanded to encompass the enterprise of the St Christopher’s project itself, and those involved in it

‘I long to bring patients to know the Lord and to do something about helping many to hear of Him before they die, but I also long to raise the standards of terminal care throughout the country from a medical
point of view at least, even where I can do nothing about the spiritual part of the work.

Question 145

Clark (1998), 1964 - an article written at the request of the American Journal of Nursing

Answer 145

On receiving the manuscript, Dorothy Nayer, the Associate Editor of the journal had written: ‘What a beautiful and moving article! It will be an honor for us to publish it’.

Readers took a similar view: ‘… you have been a guiding
light in helping me to discover what I have been searching for as a student nurse’

Question 146

Clark (1998), routinisation envisaged from early stage

Answer 146

even in April 1960 Cicely Saunders could anticipate a future management structure, with a council of management, sub-committees, and trustees all
‘advising and/or controlling “the autocrat” myself, the person who actually did
all the donkey-work and was the link … [and] provision will obviously have to
be made for my successor or successors’

following passage, from a letter to Jack Wallace,
suggests, again, that elements of ‘routinization’ were already present in the
discussion: The whole question of administration and staffing needs to be, if not fully aired, passed on to a sub-committee

Question 147

Victorian homes for the dying poor

Answer 147

LʼAssociation des Dames de Calvaire in Lyon, France (1842).

The Irish Sisters of Charity hospice in Dublin (1879).

St. Luke’s Home for theDying Poor (1893)
St. Joseph’s Hospice (1905) in London.

Question 148

1977

Answer 148

97% doctors disclosed diagnosis

Question 149

Julia Lawton, The Dying Process, (2001)

Answer 149

Criticises romanticised conception of dying patients in hospice movement lit

Most of the literature available [about hospice care is] … written by hospice professionals … We are told that the dying process that has been hidden away in hospitals is surrounded by problems; problems for which hospice care can provide the solution. The images accessible within this literature are in fact very similar to those contained within Hollywood deathbed scenes. Hospice professionals offer the reassurance that, with the compassionate care and effective methods of pain control they can now provide, it is possible to preserve the dignity of dying patients right up until the point of death; to enable patients to “live until they die”. A somewhat romanticised conception of dying patients resting comfortably in bed, mentally alert, calm and reassured is all too prevalent within this literature’.

Question 150

Julie-Marie Strange, crit of Ariès-style analysis

Answer 150

death at home not necessarily ideal - w-c home was not necess a place of great comfort

Question 151

Geoffrey Gorer

Answer 151

death became pornographic - dirty secret

Question 152

William Munk, Euthanasia: or Medical Treatment in Aid of an Easy Death (1887)

Answer 152

“There is little to be found in medical writings on the
management of the dying . . . The subject is not specially taught in any of our medical schools [and] needs a systemic treatment that has not hitherto been accorded to it.”

Opium, “our one trustworthy remedy,” he writes, “must be
administered in such doses as will appease suffering and
disorder, and in this respect we are to be governed solely by the effect and relief afforded . . . [Its effects] continue for about
eight hours, and if its action is to be maintained it should be repeated at intervals of that duration or somewhat less

Question 153

How were attitudes to a ‘good death’ changing in the 1950s?

Four shifts

Answer 153

1) shift from ‘idiosyncratic anecdote to systematic observation’
2) new concern with ‘dignity and meaning’ of terminal diagnoses
3) passive (‘there is nothing more we can do’) < active (we can’t save patient, but can we help them?)
4) recognition of the interdependency of physical-mental suffering (Cicely Saunders, total pain)

Question 154

Statistics on hospital involvement in end-of-life care in the UK

Answer 154

• 25% of beds taken up by patients in last year of life
• 60% of deaths occur there
• 37% in ICU die within 6 months

Question 155

Contextualising Illich’s critique of medicalisation

Answer 155

• ‘At the time Illich was writing, the mid 1970s, a much more unitary and optimistic view of medicine was in evidience than exists today, and this was a basis for his critique
• n.b. it is true than medicine has become more divided into micro-specialisms

Question 156

Clark’s judgements on the Medicalisation of death

Answer 156

palliative medicine has contributed to the medicalisation of death, but for patients this has alleviated pain and suffering

‘inappropriate to see this as an example of either medical imperialism or the world we have lost’

Question 157

Cicely Saunders, the early vision for a hospice and its purpose

Saunders, Cicely, ‘The Evolution of Palliative Care’

Answer 157

somewhere more suited to the need for symptom control and, above all, where there was a chance to come to terms with the situation more easily than in a busy surgical ward.

Question 158

What does Cicely Saunders list as some of the key qualities of hospice care

Saunders, Cicely, ‘The Evolution of Palliative Care’

Answer 158

• symptom control
• a multi-professional team
• home care
• peripatetic hospital teams
• Maximising the potential for the patient’s quality of life
• bereavement care
• spiritual needs
• research and education

Question 159

Attitudes to palliative care in the UK?

Saunders, Cicely, ‘The Evolution of Palliative Care’

Answer 159

• The patients’ carers were asked ‘Looking back now and taking the deceased’s illness into account, do you think she or he died at the best time — or would it have been better if she or he had died earlier?
• A total of 28% of the respondents, with a bias towards the younger carers, and 24% of the deceased expressed the view that earlier death would be, or would have been, preferable.
• However, only 3.6% were said to have asked for euthanasia at some point during their last year c.f. to 70–80% for public opinion polls

Question 160

Judge Devlin on shortening life with treatment

Taken from trial of Dr. John Bodkin Adams, accused of murdering patient with morphine OD to inherit property

Saunders, Cicely, ‘The Evolution of Palliative Care’

Answer 160

If the first purpose of medicine, the restoration of health, can no longer be achieved, there is still much for a doctor to do, and he is entitled to do all that is proper and necessary to relieve pain and suffering, even if the measure he takes may incidentally shorten life.

The cause of death is the illness or the injury, and the proper medical treatment that is administered and that has an incidental effect on determining the exact moment of death is not the cause of death in any sensible use of the term.

Question 161

Evidence that palliative care should branch beyond cancer patients

%

Saunders, Cicely, ‘The Evolution of Palliative Care’

Answer 161

Regional Survey of the last year of 3960 patients who died in the UK showed that 16% of people with other diagnoses suffered many of the same symptoms, often for longer periods

Question 162

Early Research at Saint Christophers

Clark, D., ‘From Margins to Centre: A Review of the History of Palliative Care in Cancer’,

Answer 162

Research at St Christopher’s Hospice began even before the first patient was admitted. Parkes built up a cohort of patients over time, consisting of 276 patients who had died from cancer in two London boroughs, 49 of whom were still under active treatment at the time of death. He discovered that many of the patients had died with unrelieved pain, whether the patient died in hospital or at home.

Question 163

Teaching medical students about death and dying

Answer 163

Wilkes report 1980 recommends it’s added to the curriculum

In 1993, the
Association for Palliative Medicine in Great Britain
and Ireland3 produced its curriculum for medical
students and practising doctors

‘What is the
greatest extent to which the topic of dying, death and
bereavement is represented in your curriculum?’

–> In the 11 programmes
(46%), such material was integrated across the curriculum in various ways(but not tackled directly)

The mean number of taught
hours was 20. This compares with overall means of 6 hours in 1983 and 13 hours in 1994.

Contact with terminally ill patients in class or one to one

—–> we believe, the provision of teaching has moved away from the academic disciplines
of psychology and sociology towards those
involved in the practicalities of caring for people who
are dying,

—> The finding from this study that all medical schools with clinical teaching are now providing teaching about palliative care to all their medical students is heartening.

Question 164

Carel, ‘The Cry of the Flesh’, on the nature of illness and living in the present with an awareness of one’s own mortality

Answer 164

(In 2006, Carel was diagnosed with lymphangioleiomyomatosis (LAM), a rare and progressive lung disease with a prognosis of about ten years from the onset of symptoms. She describes the overwhelming impact of this world‐shattering diagnosis on her life.)

‘life‐transforming process’

Memories of past abilities can often be very painful for the ill person, and the future may represent various anxiety‐inducing possibilities. For this reason, the present has become intensely precious to her, and she describes how this new appreciation of the present moment has enriched her life. Happiness is not dependent on objective standards of good health. According to Carel, the good life is compatible with illness if we change our attitudes to time, mortality and well‐being.

Question 165

Carel, ‘The Cry of the Flesh’, philosophy as treatment

Answer 165

advocating thinking and philosophy as means to help ppl come to terms w dying - e.g. Epicurian manner of looking at death - death is nothing at all, so therefore absolutely nothing to be afraid of and no point worrying about

Question 166

Mrs Johnson, Huffington Post, 2017 - Medicine’s failure to accept death

Answer 166

prepared the legal documents that were intended to give him control over the end of his life.

A fat lot of good it did us

many health care practitioners have a view that extending life ― at any cost ― is preferable to death.

Some experts in palliative care go so far as to say the U.S. has a “death-defying” culture

prolonging death is not the same as extending life.

Question 167

Mrs Johnson, Huffington Post, 2017 - the money in terminal medicine

Answer 167

Spending on Medicare beneficiaries in their last year of life accounts for about 25 percent of all Medicare spending. In 2011, Medicare spending was almost $554 billion ― 28 percent of which was spent during patients’ last six months of life, according to Kaiser Health News.

study published in the Archives of Internal Medicine asked if a better quality of death occurs when end-of-life medical spending rises. The short answer: Quite the opposite happens

Question 168

Mrs Johnson, Huffington Post, 2017 - invasive procedures performed on Vic Johnson in last 24 hours of his life

Answer 168

IV was stuck in his jugular vein when another vein couldn’t be found. He was rushed by ambulance to the emergency room, where he spent seven hours before being admitted to the ICU. He was treated for bedsores on his back, his behind and his legs ― all developed in a nursing home with a staff that failed to turn him over to prevent them

Once admitted to the ICU, he was rushed into a five-hour emergency surgery that left him with a colostomy bag and on a ventilator.

Question 169

Mrs Johnson, Huffington Post, 2017 - patient’s conception of ‘good death’ being put ahead of carers’ wishes/ situation

Answer 169

“We know that your insurance won’t pay for your nursing home anymore,” the compassionate care team nurse told him, “but we don’t want that to be a factor in any decisions you make.”

Question 170

Timmermans (1998), importance of resuscitation as a ritual

Answer 170

people in Western cultures provide meaning to the unexpected cessation of life through resuscitative efforts. A resuscitative effort needs to be understood as a biomedical ritual to facilitate a status passage. Through the CPR motions, the transition from life to death or from able bodied to chronically ill (if the reviving attempt succeeds in restoring life) is made

In the ED, these cultural meanings are enacted and embodied. In the hospital, the relatives and friends of a deceased person have the opportunity to talk to a social worker or chaplain who is trained in dealing with death and grieving. In contemporary urban and suburban living, this set-up might provide more personalised professional help than grievers might expect if their loved one had died suddenly at home. The professionals also help address the logistical questions related to funerals and wills. To remove all remaining guilt feelings, they offer organ-donation as the ‘gift of life’

Without resuscitation techniques in our secularised culture, sudden death would be a senseless traumatic event

he resuscitative effort sustains a period of liminality which allows the relatives and friends to prepare for the transition to death

Question 171

Timmermans (1998), possibility of making a sudden death a ‘good death’

Answer 171

To the extent that sudden death can become dignified, this was a dignified death. As part of the resuscitative effort, the staff tried to meet the relatives’ spiritual and emotional needs. The parents had the opportunity to say farewell to their baby. The mother and father prayed and asked questions about any reactions in the ambulance. They had time to hold the baby and sing a song. The chaplain, nurses, and sociologist grieved with them. In addition, the relatives had an advocate on their behalf to talk to the police officer who inquired whether this was indeed a SIDS or a death caused by child abuse

The meaning of sudden death changes thus profoundly when we view resuscitative efforts not only as technological interventions to save lives at all costs, but also as opportunities to prepare for pending death

Family involvement/ participation - talking to patient etc

While this new policy is not yet a dominant model, it has strong advocates.

Question 172

Geoffrey Gorer, ‘The Pornography of Death’ (1955)

Answer 172

In the 20th century, however, there seems
to have been an unremarked shift in prudery; whereas copulation has become more and more “mentionable,” particularly in the AngloSaxon
societies, death has become more and more “unmentionable” as a natural process.

I cannot recollect a novel or play of the last twenty years or so which has a “death-bed
scene” in it, describing in any detail the death “from natural causes” of a major character;

I cannot find one over the age of sixty who did not witness the agony of at least one near relative; I do not think I know a single person under the age of thirty who has had a similar experience

the natural processes of corruption and decay have become disgusting

In both types of fantasy (sex and death), the emotions which are typically concomitant of the acts-love or grief-are paid little or no
attention, while the sensations are enhanced
as much as a customary poverty of language permits.

Question 173

Geoffrey Gorer, ‘The Pornography of Death’ (1955), why has death become disgusting?

Answer 173

connection between
the shift of taboos and the shift in religious beliefs. In the 19th century most of
the inhabitants of Protestant countries seem to have subscribed to the Pauline beliefs in the sinfulness of the body and the certainty of the after-life.

in England, at any rate, belief in the future life as taught in Christian doctrine is very uncommon today even in the minority who make church-going or prayer a consistent part of their- lives

rise in violent deaths

Question 174

Geoffrey Gorer (1955), incompleteness of hiding of death

Answer 174

people have to come to terms with the basic facts of birth, copulation, and
death, and somehow accept their implications; if social prudery prevents this being
done in an open and dignified fashion, then
it will be done surreptitiously

If we make death unmentionable in polite society-“not before the children”- we almost ensure the continuation of the “horror comic.” No censorship has ever been
really effective.

result of death-denying culture = psychologically-disturbed mass audience for unnatural, violent deaths as an entertainment genre (viewed as pornographic)

Question 175

Foltyn (2008), updating Gorer’s thesis

Answer 175

in societies oversaturated with images of sex, death is the ‘new sex’

Saw, Sweeney Todd, Corpse Bride

researchers studying television violence have found that depictions of dead bodies on prime time more than doubled between 2004 and 2005

this is the corpse’s cultural moment

Clearly, we are of two minds about the dead body, using and discarding it, displaying and secreting it

Uncertainty about the corpse’s status draws us to sensational images of the dead famous, but makes us feel dirty or guilty for
looking

fascination with Saddam Hussein’s execution, December 30 2006 - 29 Youtube videos of Hussein’s execution by Jan 2008. Triumph of Youtube shows there is public appetite for the real thing - had supposed to be private execution.

Question 176

Foltyn (2008), new pornography of death

Answer 176

wld shock Gorer

is as grief-gutted as the old but dazzles the audience
with its shocking corpses, flashy forensic science, and exotic causes of death that
are far removed from most people’s experiences

eroticization of dead bodies

In the fiction worlds of CSI and its clones, the sexualized corpse is a stock character as is the murdering sexual sadist.

CSI (2006): a man is forced to watch his wife be tortured, raped, and killed, and then is murdered.

Entertainment today is moving the boundaries between socially and sexually acceptable contact between the living and the dead.

Cross-culturally, dead bodies are transformed into the cultural body, aesthetically displaying a group’s common values, customs, social roles and social relations (Brain, 1979)

the de facto argument that we live in a death denying culture is more mantra than fact; rather, death has been more hidden than denied

In postmodern western secular societies, we may have Halloween but we don’t have a Day of the Dead. The Ars moriendi, the ‘‘art of dying’’ instructions, common in the European Middle Ages, has been largely lost, except in the hospice movement. Perhaps shared grief about the passing of celebrities and fascination with their corpses are ways for everyday people to better familiarize themselves with death and the dead human body

Question 177

Foltyn (2008), explanation for rise of new pornography of death

Answer 177

• novelty and the drive for ratings tied to advertising revenues

-The popularity of
the forensic pathology novels of Patricia Cornwall, which have occupied
bestseller lists since the early 1990s, influenced the development of reality and
fictional television series about medical examiners and forensic teams.
Discovery’s The New Detectives appeared in 1996, and CSI on CBS in 2000

• Millions of Baby Boomers are now facing their first intimations of old age and hence mortality, and one reason ‘‘death has gone pop’’ is because a market has emerged to examine the hidden experience of death and to return death to the
  community
• Nelkin and Lindee (1995) argue that one reason DNA has emerged as a pop cultural icon is because it in some sense has replaced the soul and become a sacred entity, a way to explore immortality. Thus, the corpses of scientific and forensic inquiry may also be operating as signs of faith, hope, and certainty, in an uncertain world, as we search for immortality

Question 178

Ernest Becker, 1973, The Denial of Death

Answer 178

The book’s basic premise is that human civilization is a defense mechanism against the knowledge that we will die. Becker argues that humans live in both a physical world of objects and a symbolic world of meaning. The symbolic part of human life engages in what Becker calls an “immortality project.” People try to create or become part of something which they believe will last forever—art, music, literature, religion, political movements, institutions, nations

Becker argued that mental illness, especially depression, results from lacking a project that gives people lives meaning. Without one we are reminded of mortality and meaninglessness

He also argued that schizophrenia results from a lack of defense mechanisms against mortality, causing sufferers to create their own reality.

conflicts between contradictory immortality projects, especially religious ones, is the main cause of wars, bigotry, genocide, racism, nationalism.

Becker suggests that we need new comforting “illusions” to enable us to feel eternally important.

Question 179

Foltyn (2008), Diana and cult-like following of the dead celebrity

Answer 179

Princess Diana is arguably as famous in death as she was in life. Indeed, some
celebrities become more famous after they die (e.g., Elvis Presley and Marilyn
Monroe) and have cult-like followings that keep them visually intact and lucrative.
The ‘‘lives’’ and images of dead celebrities at their youthful best are often more
popular and profitable than those of living luminaries

Question 180

Freedland, Guardian, Aug 2007, Diana

Answer 180

Moment of madness

it has become an embarrassing memory, like a mawkish, self-pitying teenage entry in a diary. We cringe to think of it. It is our collective moment of madness, a week when somehow we lost our grip

said a million bouquets laid

There was next to none of the wild shrieking and shouting one would expect from the “mass hysteria” that was claimed. On the contrary, people queued patiently for hours at a stretch

I visited Kensington Gardens the night before the funeral and it remains one of my most cherished London memories. There were clusters of people sitting on the grass, chatting in a low murmur. Pictures hung from trees, flowers were everywhere, and the whole place was lit with 1,000 candles. A London park had become an outdoor cathedral, its congregation led by no one but themselves.

Question 181

Christopher Hitchens after Diana’s death

Answer 181

Britain has become a one-party state

Question 182

Keats, Ode to a Nightingale (1819)

Answer 182

Now more than ever seems it rich to die,

To cease upon the midnight with no pain,