BOOKS ON HOSPICE CARE
Selected and reviewed by James Park.
The text in black presents the content of each book.
The text in red presents the views of this reviewer.

1. Julia Lawton
The Dying Process:
Patients' Experience of Palliative Care

(London, UK: Routledge, 2000)       229 pages
(ISBN: 0-415-22678-3; hardcover)
(ISBN: 0-415-22679-1; paperback)
(Library of Congress call number: R726.8L39 2000)
(Medical call number: WB310L425d 2000)

    The hospice movement began because of perceived problems
associated with dying in hospitals and nursing homes.
Patients were not told they were dying.
Terminal patients were put into back corners or wards of hospitals and given less care.

    The hospice movement wanted to improve all aspects of dying.
And the first step was to reverse the denial of death.
Now patients are admitted to hospice programs
only after they are informed (and agree) that they are dying.
Care shifts from attempting to cure the patient to comfort care.

    Julia Lawton did field work in several hospices in England,
where she observed about 200 deaths.
She wrote this book in the hope that the process of dying
(even in hospice) can be improved further.

    As hospices came under government funding and control,
there was renewed emphasis on cost-effectiveness
as opposed to being a family- or home-like setting for dying.
The personal and spiritual services
(which could not be quantified as easily as medical procedures)
lost out in favor of the physical care of the body.

    In the United States, most hospice care is provided at home.
And different levels of government payment
depend on different levels of physical care required.

    Julia Lawton worked as a hospice volunteer
in several residental hospices while doing her research for this book.
This permitted her to take part in the daily life of each hospice.
Because of the setting of the research,
this book does not represent a fair cross-section of dying people.
Most of the hospice clients had cancer
with symptoms too difficult to cope with at home.
And the research did not include patients and families
who were still in denial about the coming deaths.
Patients who were uncomfortable about dealing with death
decided to stay in hospitals or nursing homes.
Thus, patients who chose hospice care
were more open about talking about death than the general population.

    These hospice patients were generally kept in an open ward,
which meant that their deaths were observed by other patients and their families.
Some dying patients and their families preferred
more private settings for the process of dying.

    This reviewer agrees that dying patients
should be offered all possible options.
Let the patients and their families decide
the best settings for the coming death.
And let them choose the best time
that will be most meaningful for everyone involved.

    One common problem of hospice care
is that the patient becomes less of a subject and more of an object.
The focus of care shifts from
caring for the feelings of the patient as a person
to caring for the body as a physical object,
requiring particular forms of daily care.

    One chapter tells of a day-care setting for terminal patients
who were still living at home.
They got together with other terminal patients, staff, & volunteers
once a week for social activities.
Death and dying was not the focus,
altho all had to agree in writing that they had less than 6 months to live.
This permitted their families a needed respite once a week.
And these patients looked forward to this once-a-week occasion
away from their homes and with some new friends.

    When patients could no longer be taken care of at home,
they were moved to residental hospices,
where at least their physical needs were provided for.
But this did not seem to be a very meaningful way to wait for death.
Carers and family often reported that the patient lost personhood
when the old interactions were impossible
because of loss of memory or even loss of consciousness.
The patients became mainly bodies to be maintained
rather than persons to be cared for.
And the families often wished that the dying process could be shortened.
But the hospice philosophy was
neither to shorten nor lengthen the natural dying process.
According to the staff, a good death was without pain and distress:
The patient merely falls asleep and "slips away".

    This reviewer believes that hospice clients and their families
should be offered several options for end-of-life care.
Let everyone discuss what would be the best way
for this patient to live his or her last days.
And these options should include all of the legal choices
then available for shortenting the process of dying.
At present, the patient and proxies can choose:
(1) increased pain medication, even if this shortens the process of dying;
(2) terminal sedation, keeping that patient unconscious until death;
(3) withdrawing all means of life-support;
(4) terminal dehydration, giving up all food and water.
And in Oregon and Washington in the USA and some other countries,
(5) they can also use a lethal drug that will bring life to an immediate end.

    Social death occurs when the family has had enough of this dying process.
They stop visiting as often or staying as long.
They have finished their interpersonal business with the dying patient.
And now it is just a matter of waiting of the end.
When the dying process takes too long,
this not only does no good for the dying patient,
but a drawn-out dying can be very harmful to the family.
Some families fall apart because of the stress
of dealing with a protracted dying process.
Some families basically abandon their dying relatives
because they can no longer cope.

    This book might be understood as hospice demythologized.
The hospice experience as known to the patients and families
is quite different from the public hospice philosophy.
But once we acknowledge the real problems,
we can begin to make meaningful changes
that will improve the process of dying for everyone involved.
created January 12, 2007; revised 3-6-2009; 4-22-2009

See related bibliographies:

Best Books on Voluntary Death


Best Books on Preparing for Death


Books on Terminal Care


Books on Helping People to Die


Best Books on the Right-to-Die

Books Opposing the Right-to-Die


Go to the Book Review Index
to discover 400 other reviews
organized into more than 40 bibliographies.

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