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5 The Rise of the Hospice and Palliative Care Movement

5 The Rise of the Hospice and Palliative Care Movement

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11.5 The Rise of the Hospice and Palliative Care Movement



151



later for people with AIDS. Other contributors to this movement and influenced by

Saunders were Balfour Mount, who coined the term ‘palliative care’ and opened the

Royal Victoria Palliative Care Unit in Canada in 1975, and Florence Wald, the Yale

Dean of Nursing who founded the first American hospice programme in 1974

(Zimmermann 2012).

The hospice movement has been underpinned by a growing literature on care of

dying people. This was spearheaded by the work, On Death and Dying (KűblerRoss 1969) by Dr Elizabeth Kűbler-Ross, a Swiss American psychiatrist. This book

identified five stages through which Dr Kűbler-Ross suggested many terminally ill

patients progress (denial and disbelief, anger, bargaining, depression, and acceptance). While Kűbler-Ross was not the first to identify these stages – they were used

in 1952 by James Robertson and John Bowlby in their studies of children separated

from their mothers (Parkes 2013) – the book became an international best seller and

in it Kűbler-Ross made a plea for home care as opposed to treatment in an institutional setting and argued that patients should have a choice and the ability to participate in the decisions that affect their destiny. While some of Dr Kűbler-Ross’ later

work has come under scrutiny because of the lack of empirical evidence to support

it, this initial work has become widely cited and used in the education of health

professionals as well as in the many ‘self-help’ books on grieving.

There have been a number of other stage theories of the process of dying (Mamo

1999), and they have both a symbolic and practical purpose. They provide a framework and routine for what is a ‘non-routine’ and extraordinary event in a person’s

life, and they contribute to the idea of a dying trajectory that we all will eventually

pass through. In the past, religious frameworks provided theodicies or explanations

for the inexplicable (for example, tragedies such as the death of a child or young

person, suicide or violent deaths), and provided us with a sacred canopy that protected us from falling out of culture, “a descending spiral into isolated, anomic,

inhuman existence” (Hilbert 1984: 375). However with the movement of religion

from the centre to the periphery of social life, questions about death are no longer

uniformly answered in religious ways. As Berger (1967) argues, in our largely secular and individualistic society religious answers to explain death are often not

sought, even though the philosophy of some hospices remain based on Christian

religious precepts. Without Berger’s (1967) idea of the sacred canopy of religion

Giddens (1991): 113 suggests that now in “fateful moments” when our basic security about being in the world is undermined (such as, for example, a diagnosis of a

terminal illness) there is often a turn to a variety of expert systems, whose solutions

are perused and ultimately rejected or accepted in a leap of faith. These expert systems include orthodox medicine as well as many alternative therapies. Indeed it is

in the area of cancer treatment that a whole range of competing therapies have

always been available but these have become more visible with the increased prevalence of cancer.



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11.6



11



Aging, Dying and Death



Dealing with Dying and Death



There are many health professionals who come in contact with those who are dying,

however it is still seen as the responsibility of the medical staff to break the bad

news, if death can be anticipated, and an open awareness context entered into.

Hospice staff often see people later in the dying trajectory after this news has been

broken. While studies in Britain (Seale 1998) show that nurses appear to be marginal in the decision on whether to disclose or not, they commonly accept the task

of dealing with the aftermath of the disclosure interview. They do this by being

present at the event if possible, and often repeating the news to people often too

shocked to take in the consequences of the information, and viewing themselves as

facilitators for the grief of patients and relatives. Indeed it is largely nurses who

attend to the journeys that follow after the initial entry of dying in an open awareness context.

This is not surprising given the different roles of nurses and doctors, and is also

reflected in their different education experiences. MacLeod (2000) has shown that

the education of doctors concentrates on the disease process and emphasizes the

ability to control symptoms in terminal illness, whereas nursing education focuses

on the person with the disease and how it affects them, their life and that of their

families. MacLeod highlights that most of the relevant writing on caring for ill and

dying people comes from nursing with remarkably little from medicine.

Nursing remains a predominantly female occupation and there is a blurring

between the emotional labour that is undertaken in the paid work of nurses and the

unpaid work of women. Arlie Russell Hochschild (1983) used the term emotional

labour to describe the emotion work that women do in certain occupations (for

example, airline stewardesses) that serve the commercial ends of the organizations

they are employed by.

In a similar way other female dominated occupations are claimed to bridge the

gap between private roles and public roles with nurses being one example, and this

is one reason they have been able to claim special expertise in the area of dying. The

focus on caring as opposed to curing had meant that nurses have been able to appropriate the task of looking after the dying, in a way that other occupational groups,

have not. When women were not engaged in the paid workforce in large numbers

before the 1960s it was women who mainly did the caring for people dying and the

after-death caring of the body (Opie 1992). Now that dying and death occurs within

an institutional setting women, in the role of nurses and also volunteers, still do

much of this work. The growth of hospice and palliative care is one area where

nurses’ claims to special expertise in caring have been effective and a visible

reminder of their professional status.



11.7



11.7



The Funeral Industry



153



The Funeral Industry



While the above discussion has focused on open awareness contexts of dying and

death, this section focuses on the growth of the funeral industry – an industry which

deals with deaths from all causes. While in many countries it may be possible and

legal to arrange a funeral and burial without any outside help, many people rely on

the services of a funeral home. In keeping with the other societal changes this industry has also changed over time from being that of the coffin maker, undertaker and

a family business, to a competitive industry with professional training and codes of

practice. To emphasise the interpersonal role played by the industry the organization

is now often called a funeral home, the undertaker is called the funeral director and

there is a division of labour within the industry ranging from grave digging to florists providing floral tributes. It is therefore an industry that has effectively increased

its range of practice to include all aspects of care of the dead person.

In the case of sudden deaths (for example, motor vehicle accidents, suicide, sudden infant death) it is often the police, fire service and funeral directors who deal

with the initial situation. In New Zealand, for example, ambulances do not carry

dead bodies so funeral directors are called to fatal accidents, violent deaths and

suicides, to take the bodily remains to hospital mortuaries for autopsy. They also

collect the bodies of those who die at home, at hospitals, hospices, retirement and

rest homes and take them to their funeral home. When the body arrives at the funeral

home embalming may take place. The aim of embalming is to preserve the body

tissue and to try and make the body look ‘natural’ again. The embalming process

involves pumping a mixture of preservative fluids through the carotid artery into the

arterial system to replace the blood, which is forced out through the jugular vein,

preserving the body and slowing down the decaying process.

In Australia and New Zealand funeral directors also offer support for the bereaved

family and friends, call a minister of religion where necessary and organize the

funeral service with the family. They usually spend time with the family, finding out

about the life of the dead person, to help with the way the funeral service is arranged.

They may also conduct the funeral service if requested or arrange a celebrant to do

this, if a minister of religion or priest is not wanted in the process.

The funeral homes arrange death notices for newspapers, make sure all the legal

documents are completed, prepare and dress the body in the funeral clothes and

often take the mourners in to view the body once it has been prepared. If the body

is to lie at any place other than the funeral home they will take the body in the casket

to this place and then collect it for the funeral service. They also arrange the burial

site with the sexton at the cemetery who is responsible for providing the site and

keeping a register of where people are buried. The sexton will also organize the

grave digger to dig and fill in the grave. If the body is to be cremated before burial

or any other mode of disposal (for example, scattering of ashes in a specific place)

it is placed in its casket inside the cremator. After cremation the ashes (or cremains)

of the deceased are placed in a labelled casket and usually returned to the family.



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11.8



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Aging, Dying and Death



Case Study – Funeral Director Work



Everett Hughes in 1958 used the term dirty work to refer to work that is a necessary

part of any occupation that is not respected or admired. He wrote in his work on

doctors that “to bring back health (which is cleanliness) is the great miracle… the

physician’s work touches the world of the morally and ritually, but more especially

that of the physically, unclean. Where his work leaves off, that of the undertaker

begins” (cited in Watson and Tolich 1998: 332). Watson and Tolich (1998) suggest

that nearly 30 years later these feelings of stigma and uncleanliness are still associated with working with the dead. They identify a number of strategies that people

working in the funeral industry use when dealing with the unpleasant aspects of this

job. They use the term emotion management to describe how funeral home workers

deal on a daily basis in working with death and grief. Funeral workers talk about the

deceased using phrases like “treating the body with dignity and respect” (Watson

and Tolich 1998: 330), something also done by nurses when ‘laying out’ the person’s body after death. Recognition that the body is no longer a person is made by

terms that make reference to the body only being “a shell” and that the person is no

longer there or present (Watson and Tolich 1998: 331). Indeed, different religions

teach that the soul leaves the body after a certain time period, and it is disrespectful

to prepare the body before this time has elapsed.

The discussion by Watson and Tolich referred to above commences with a

description by Bronwyn Watson of her participant observation in a funeral home in

a New Zealand city. This excerpt is reproduced here because it is still representative

of the practice of dealing with death in many institutions (hospitals, rest homes,

hospices).

The phone rings. Kate, the funeral home secretary, pokes her head around the door to tell

Eric, the funeral director, that an elderly woman has died in a hospice in the neighbouring

city, twenty minutes drive from here. Her body is ready for removal. Eric tells Kate to tell

them he is on his way and asks if I would like to go for the ride. I would, so we climb into

the small grey station wagon used for transporting bodies on non-ceremonial occasions.

Eric says it is less obtrusive. At the hospice Eric backs the car up to the back entrance. This

is not easy as the driveway is narrow and there are other vehicles, galvanised iron rubbish

bins and green plastic portabins in the way. We climb out, Eric opens the back of the car and

we unload the trolley. I wait by the car with the trolley while Eric knocks at the back door

and asks the smiling nurse if it is okay for me to come in. She looks at me, smiles again and

says, “Yes.” When we have manoeuvred the trolley in through the sliding door she asks us

to wait by the reception desk while she checks to see that the corridor is empty and the doors

all shut. Eric says that they are always fussy about doing that here. A few minutes later the

nurse is back to say it is all clear. Following behind her we manoeuvre the trolley round the

sharp, narrow corner and scuttle almost furtively along the empty corridor to the bedroom.

When she is certain we are ready and that there is no one else around, she opens the door

and we push the trolley back and forth until we can get it into the room. The nurse immediately shuts the door behind us. On the narrow bed in the small room, the old woman looks

peaceful, but definitely dead. She has been arranged with her hands folded on her chest with

a pink camellia between them. Her eyes are shut and her mouth is closed. Eric takes the

heavy grey vinyl cover off the trolley and pulls a sheet out from underneath. We fold the

bedclothes back and while the nurse and I roll the old woman away Eric tucks the sheet



11.8



Case Study – Funeral Director Work



155



under her. We roll her back and Eric pulls the sheet right through. The nurse and I fold the

sheet over the old woman while Eric unbuckles two straps on the trolley. He then sends the

nurse to the head and me to the feet of the old woman. He stands at the middle and we all

grab hold of the sheet and heave the body across to the trolley. Eric ties the straps and pulls

the grey cover over the top, saying nothing can disguise what is there so they don’t use the

red box-shaped cover that others do. The nurse spots the camellia now lying on the bedside

table, picks it up, and pokes it under the grey cover. She then asks us to wait while she

checks that the corridor is clear and slips out the door, carefully shutting it behind her.

Minutes later the nurse slips back through the door, smiling and a bit breathless, saying that

it is sometimes difficult to clear the corridor and shut all the doors. We manoeuvre the trolley out the door, tipping it up to get out, turning it around so that the body will be pushed

out feet first. Eric pushes from the back and I guide from the front, raising the front as we

negotiate the sharp turn at the reception desk. Then we are out the back door and down the

ramp to the car. Smiling, the nurse waves and calls, “See you next time!” as she slides the

door shut behind us. As we drive back into town Eric readily admits that, other than my

presence, this is normal procedure. Even in an innovative hospice, a place supposedly

accommodating both the grief of dying and the dead, the actual dead body, the car transporting the body and the death worker himself are hidden from sight. Why? If workers at a

hospice find it necessary to hide the dead, what is the place of death in our society? (Watson

and Tolich 1998: 322–324).



While this hiding of the dead body from sight may be a feature within institutions, the death itself cannot be hidden. The presence of grieving relatives, the closing of doors, the clearing of corridors, and finally the empty bedroom is all evidence

that a death has occurred. Those working in the institutions would claim that it is to

protect the other people in the institution from distress of seeing the dead body,

rather than the fact that a person has died. In some rest homes it has been the practice to leave the room of the deceased person empty for at least 48 hours or longer

so that other residents have time to adjust to the death, and also for the room to be

refurbished. In acute hospitals where the turnover of patients is rapid this practice is

seen as unnecessary and impractical; and in many commercial rest homes it would

be seen as financially unviable.

While the dead body may be kept hidden in institutions there are some public

contexts in which dead bodies are more visible. We may see them on the television

in war coverage, but that is often far from home and thus ‘unreal’; we may now

sometimes see in the news media a body covered with a tarpaulin at the scene of a

road accident or murder. When this practice first occurred there were letters of protest to the news media but over time this practice seems to have become more routine and we as viewers may have become desensitized to this sight. Fictional media

have also played a role here with shows such as CSI: Crime Scene Investigation

(CBS, launched in 2000 and currently in its 15th season) graphically portraying the

dead body (see also Chap. 16).

Following death it is also now more common for the person’s body to be returned

to the home of their family prior to the funeral, and present for all visitors to view

and touch. If the body is not at home then people, including children, are frequently

encouraged to view the body in the funeral home as a way of coming to terms with

the death and being able to grieve. Just as there are accounts of the stages of dying

there are also accounts that detail the process of grieving. This is a consequence of



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