HOSPICE CARE---improving care of dying persons

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. David J. Casarett, MD

Last Acts:
Discovering Possibilities and Opportunities at the End of Life

(New York: Simon & Schuster: www.simonandschuster.com, 2010)       354 pages
(ISBN: 978-1-4165-8037-9; hardcover)
(Library of Congress call number: R726.8C397 2010)
(Medical call number: WB310C335L 2010)

    A palliative-care doctor tells the stories of several of his patients.
Each approached his or her death in a different way.
And sometimes there are historical examples of the same orientations.

    The writing is good enough to make this a book worth reading aloud.
The careful reader will find much to think about.

2. Fran Smith & Sheila Himmel

Changing the Way We Die:
Compassionate End-of-Life Care and the Hospice Movement

(Berkeley, CA: Cleis Press, 2013)       223 pages
(ISBN: 978-1-936740-51-2; paperback)
(ISBN: 978-1-936740-60-4; e-book)
(Library of Congress call number: R726.8.S65 2013)

    The historical roots of the hospice movement,
which has now grown in the USA to the point
where 44% of all deaths take place with hospice support.

    Many detailed stories of patients dying with hospice care.
Patient stories form the core of this book.

    Some chapters also devoted to the care-givers.

    Recently in the United States,
for-profit hospice systems have been on the rise.
They provide all the services required by Medicare
and still make a profit at the end of the year.
Medicare provides a per-day payment for hospice care.
And by reducing costs in every possible way,
for-profit organizations have been able to turn dying
into a multi-million dollar industry.

    A very readable and informative book.

3. 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 obscure corners
or back 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 residential 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 scientific 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 discussing death than the general population.

    These hospice patients were generally kept in an open ward,
where 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 a subject and more 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 agreed 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 residential 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 for a shorter process of dying.
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 shortening 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) ending curative treatments and withdrawing all means of life-support;
(4) terminal dehydration, giving up all food and water.
And in some states of the USA and some other countries,
(5) they can also use lethal chemicals that will bring life to a quick end.
See an on-line essay entitled "Four Medical Methods of Managing Death":
https://s3.amazonaws.com/aws-website-jamesleonardpark---freelibrary-3puxk/CY-L-END.html
See another essay even more explicitly dealing with hospice care:
"Methods of Choosing Death in a Right-to-Die Hospice":
https://s3.amazonaws.com/aws-website-jamesleonardpark---freelibrary-3puxk/METHODS.html.

    The patient dies a social death
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 for 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 process of dying.
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.

[last]. James Leonard Park

Right-to-Die Hospice

(Minneapolis, MN: Existential Books, 20xx)        ~160 pages
(ISBN:
(Library of Congress call number:

    Strongly departing from the forms of traditional terminal care,
this book offers the philosophical groundwork
for creating a new kind of hospice care.

    A right-to-die hospice embraces all legal methods of managing dying:
(1) increasing pain-medication even tho this will probably shorten dying;
(2) terminal sedation to keep the patient completely asleep until death;
(3) withdrawing all curative treatments and life-supports; &
(4) giving up food and water to allow death to come.

    And where permitted by law, gentle poison
can also be prescribed by the terminal-care doctor
if the other methods of managing dying are unsatisfactory.

    This book is available free of charge on the Internet:
https://s3.amazonaws.com/aws-website-jamesleonardpark---freelibrary-3puxk/RTDH.html.

created January 12, 2007; revised 3-6-2009; 4-22-2009; 9-15-2010;
2-10-2012; 10-19-2012; 1-9-2013; 7-31-2015; 8-13-2015; 4-14-2016; 3-5-2017; 3-2-2018;

See a proposal for creating a right-to-die hospice.

See related bibliographies:

Best Books on Voluntary Death

Best Books on Preparing for Death

Books on Terminal Care (from the Doctor's Point of View)

Terminal Medical Care from the Consumer's Point of View

Books on Helping Patients to Die

Best Books on the Right-to-Die

Books Opposing the Right-to-Die

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to discover 350 other reviews
organized into more than 60 bibliographies.

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