http://www.nci.nih.gov/cancerinfo/advancedcancer/page2
Advanced Cancer: Living Each Day

This National Cancer Institute booklet was written to help persons who
have gone through the struggles of diagnosis, treatment, and, perhaps,
recurrence of cancer, persons for whom a cure or long-term remission is
no longer likely.
NIH Publication #98-856

http://www.cancervic.org.au/cancer1/patients/advpatients/advanced.htm
(Australia website)

Each type of cancer has its own pattern of development. Some grow very
slowly, others tend to advance rapidly, and some are unpredictable in
their behaviour. Some types are known to respond well to treatment in
most people, while other types are generally more difficult to treat
successfully. Although many early cancers can be cured, there are many
people now living with cancer who at some time in the future will die of
their disease.

Knowing more about a particular cancer can help make sense of symptoms
and the treatments that may be offered.

Advanced cancer is a term commonly used to describe:
metastatic or secondary cancer that is unlikely to be cured
primary cancer that is unlikely to be cured.

Cancer is the name for abnormal cells that divide and multiply
uncontrollably. When cancer begins, these cells usually develop into a
mass (or tumour). This mass of cells is known as the primary cancer.

If the primary cancer is not treated, or cannot be treated, a few cancer
cells can break away and move through the bloodstream or lymphatic
system to other parts of the body. There, they divide and multiply
uncontrollably and form other masses of abnormal cells (metastases).
When cancer spreads from the place where it first grew to other parts of
the body, where it again begins to grow, it is known as secondary or
metastatic cancer.

Advanced cancer usually cannot be cured; however, it usually can be
treated to slow the growth and spread of the cancer, sometimes for
months or years, and reduce its symptoms.
(see Steph's Questions to Ask about treatments)

See other sections for more.

First reactions
The emotional impact
Treatment
Common symptoms
Complementary therapies
Unproven remedies
Death and dying
Services and information (this one is likely only useful to those in
Australia)

http://www.cancer.gov/cancerinfo/coping/

End-of-Life Issues
 Advance Directives
 Advanced Cancer: Living Each Day
 End-of-Life Care: Questions and Answers
 Loss, Grief, and Bereavement (PDQ®)
[ patients ] [ health professionals ]

http://www.benrose.org/FactOfMonth/fact23.asp (expired link)

February 2001
Caring For the Caregiver

As many as 12 million Americans spend all or part of their day helping 5
million family members or friends evade institutional care by nursing
and nurturing them in their homes. While attending to the daily needs of
their loved ones, half of caregivers continue to work part or full time
outside of the home and a quarter of them care for their ailing parents
while raising small children.

Respite care is a service provided by health care agencies that gives
temporary relief to dedicated caregivers by supplying in-home or on-site
care for those they nurse. This important part of the continuum of care
is intended to reduce family stress, prevent abuse and neglect, and
ultimately minimize the need for the conventional care of the sick and
aging.

Resp-ite Don't Risk-it
A caregiver's refusal to seek respite care is often times rooted in
guilt. The overly devout tend to sacrifice all of their time, ignore
personal needs, give-up pleasurable hobbies and ultimately loose
themselves in the care of those they are nursing.

When this culpability is coupled with the feelings of loss and grief
that naturally accompany the grave illness of a family member or friend,
the caregiver can become mentally drained and physically exhausted.
Their stress may surface physically in immune depletion, sleeplessness,
a shortened temper and even depression. In effect, a caregiver will
render him or herself incapable of providing the quality of supervision
and support their loved one deserves.

In much the same way that The Patient's Bill of Rights was written to
recognize and respect the needs of those that receive care, The
Caregiver's Bill of Rights acknowledges the privileges that should be
allotted to those providing it. It's oath professes, "I have the right
to protect my individuality and the right to make a life for myself that
will sustain me in the time when my loved one no longer needs my
full-time care." Given just a few "care-fee" hours (pun intended) of
rest and reprieve, a caregiver will be more alert, tolerant and
attentive.

The Best Respite
Discussing the possibility of respite care with your loved one, while it
is still just a possibility, will ensure that they feel included in
decisions being made about their care and will ease the trauma an
unfamiliar aide can cause. The best scenario would be to plan a few
introductory meetings with the aide before respite care is contracted.

The sudden on-set of illness or an accident may rob a caregiver of such
a luxury, in which case, explaining the necessity of the respite care
must be approached appropriately. Complaining that caring for your loved
one is, "too much" for you will only make them feel that they are a
burden. Instead, explain that respite care is necessary because you need
the help. This way, the patient realizes that their care is very
important to you, and that he or she is helping you by accepting the
assistance of the aide.

Respite Resources
A senior center program may be appropriate for individuals caring for
older persons who have minor problems with mobility and the activities
of daily living, whereas an adult day care programs maybe necessary for
older persons with serious mobility limitations, dementia, or medical
conditions which require daily attention.

Area Agencies on Aging can provide home health aide services,
transportation, delivered meals, home repairs and legal assistance to
the ill with a limited income. They can also direct their caregivers to
home care agencies and volunteer groups that provide similar services,
offer referrals or simply assesses the needs of an individual.

Agency or personal referrals may be the best avenue by which to locate
respite care professionals. Contracting caregivers that advertise in
newspapers, local flyers or bulletins is an unnecessarily risky. The
references of any aide caring for a loved one should be checked.

The Right To Respite
Providing the optimum in care for your ailing loved ones, at a basic
level, should include caring for yourself. Knowing and meeting your
basic needs ensures that you will be physically and mentally capable of
meeting theirs. Seeking out and utilizing respite care services can
prolong the quantity of time the sick and aging are able to be cared for
at home and will vastly improve the quality of time caregivers spend
with them.

The decision to use respite services should be made with guilt-free
resolve. Allowing yourself to become too tired to make your mother's
favorite sandwich or too cranky to listen to your grandfather's stories
will cause woefully remorse. Professional respite care offers the
reprieve caregivers need.

Thanks to Heather Young for researching and writing this article.
Information for this article was provided by the National Resource
Center for Respite and Crisis Care and the American College of
Physicians. The "Caregiver's Bill of Rights," was written by Jo Horne.

http://www.thenewhomemaker.com/node/521

Hospice
Comfort and care at the end of a journey
by Sheila Velazquez

Hospice (from the linguistic root of "hospitality") originally meant a
shelter or place of rest for weary or sick travelers on long journeys.
Hospice supports patients by helping them manage symptoms and live their
final days with dignity at home, or in a home-like setting.
Approximately 90 percent of patient time is spent in personal
residences, while some patients are cared for in nursing homes or
hospice centers.

History reveals that the tenets of present-day hospice were followed in
a variety of care programs as far back as the 12th century A.D. The
Sisters of Charity, an order of nuns, was established in France in the
1600s, and in the 18th century, Kaiserwerth, a hospital dedicated to
aiding the sick and dying, was founded by Prussian Baron von Stein.
English Quaker Elizabeth Fry visited Kaiserwerth in 1840 and was
inspired to begin prison and hospital reform. Florence Nightingale, a
contemporary of Fry, raised the level of respect for the nursing
profession through her work and training of caregivers. Sister Mary
Aikenhead, coworker of Nightingale, founded a hospital for the
terminally ill in Dublin in the late 19th century. St. Joseph's Hospice
began in London in 1906, and in 1967, Dr. Cicely Saunders established
St. Christopher's Hospice near London.
Hospice was established in the United States in 1974 when a group from
Yale University visited St. Christopher's and was inspired by what they
heard and saw. They returned to begin hospice care for patients in New
Haven, CT. The beginning of the modern hospice movement began in 1980,
with the establishment of Connecticut Hospice, Inc.

In the United States, there are presently nearly 3,000 programs in all
states, the District of Columbia and Puerto Rico. It is estimated that
hospice programs serve over 340,000 patients and their families each
year.

Referrals to hospice are made by the primary physician, but also can be
suggested by families, friends, clergy or other health professionals.
The decision to choose hospice, by law, is the patient's. The hospice
patient usually has a life expectancy of six months or less.
Care is provided by an interdisciplinary team which includes physicians,
nurses, home health/hospice aids, social workers, chaplains, therapists,
dietary counselors and trained volunteers. The team addresses the
medical, emotional, psychological and spiritual needs of the patient,
treating the person, not the disease, and emphasizes quality, rather
than length of life. The family, which is included in the process, is
also provided with bereavement counseling after the loved one is gone.

Volunteers make up nearly 80 percent of the hospice workers in the
United States. Each year more than five million hours are spent by
hospice volunteers practicing selflessness--giving back rubs and foot
massages, cooking special meals, playing games, performing household
chores or just listening.
Many of these volunteers give of themselves after a personal or family
experience with hospice. Others want to share the kindness they received
when dealing with the death of someone close, who may or may not have
been under hospice care. Without these volunteers, many of the personal
services provided through hospice would not be possible. Volunteers are
trained rigorously to care for patients and to assist and comfort those
close to the patient. In addition to helping patients live their last
days to the fullest, volunteers may assist with financial and other
personal matters that arise during and after the final stages of
illness.

Making a Bad Time a Little Easier
Sherry's father recently died of pancreatic cancer. She told me, "We
didn't bring hospice in until the last month, but I wish we had done it
sooner. They came twice a week and checked on him, even noticed a
medical condition that required minor surgery. No, it didn't make him
live longer, but it made him more comfortable. That's what they do, make
the patient more comfortable. And the family too. They helped us to
understand the dying process, and they were there on that last day, and
even at his funeral. They were wonderful and made the worst time of my
life a little easier."

Because family, friends and volunteers provide much of the home care to
the patient, hospice is usually less expensive than conventional care.
The Medicare Hospice Certification Program was passed in 1983
recognizing hospice care as a reimbursable service. In most states it is
also a covered Medicaid benefit. Medicare covers physician services,
nursing care, appliances and supplies, drugs for symptom management and
pain relief, short- term inpatient care including respite care, home
health aide and homemaker services, physical therapy, occupational
therapy, speech/language pathology services, medical social services and
counseling, including dietary and spiritual counseling. Hospice care is
also covered under most medical insurance programs. Since hospice is
also supported by communities, volunteers and grants, services can be
provided upon need rather than on ability to pay.

Most hospitals and healthcare organizations offer hospice. For
information as to programs available throughout the country, contact The
National Hospice Organization (NHO). Their office is located at 1901 N.
Moore Street, Suite 901, Arlington, VA 22209, and the NHO Hospice
Helpline number is 1-800-658- 8898.

http://www.globalideasbank.org/ndw/NDW-8.HTML

'People I have cared for have written "Dear Cancer" letters'
In the section of the book on spirituality, he advocates Marianne
Williamson's technique (described in her book A Return to Love) of
writing your disease a letter, so as to be able to admit to and confront
one's buried feelings. "They also help", says Kessler "to get in touch
with our deeper, spiritual selves. People I have cared for have written
'Dear Cancer' letters, 'Dear Leukemia' letters and 'Dear AIDS' letters.
In these letters, they talk about their anger at their diseases, they
share their feelings about what has happened. Some ask for their
diseases to leave, others ask that they live together in harmony."

Kessler quotes emergency room physician Mark Katz on how even with
emergency cases of cardiac arrest, a degree of dignity and calm can be
preserved, if a special effort is made. "I try to keep the energy soft
yet thorough", says Mark Katz. "I try to talk calmly yet firmly so
things do not get crazy when we have a cardiac arrest here. If we have
done everything possible without any success, a person should pass out
of life with as much dignity as possible."

The book ends with a moving spiritual message for the dying, which
concludes:

"You were carried off in the miracle of birth, and so you will be
carried off in the miracle of death. All that we are, all that we have
felt for you, all the love that was given to you, will be your cushion
on this journey. Now you will begin. I wish you love, peace and a safe
passage ..."

http://www.globalideasbank.org/ndw/NDW-8.HTML
Thus he describes the helpful 'ABCDE' approach to pain assessment:

A. Ask about pain regularly

B. Believe the patient and family in their reports of pain and what
relieves it.

C. Choose pain control options appropriate for the patient, family and
setting.

D. Deliver interventions in a timely, logical and co-ordinated fashion.

E. Empower patients and their families.
He suggests that medications for persistent cancer-related pain should
be administered on a round-the-clock basis, with additional doses as
needed, so as to help maintain a constant level of the drug in the body
and so prevent a recurrence of pain.

http://www.globalideasbank.org/ndw/NDW-8.HTML

The rights of the dying
The Rights of the Dying by David Kessler, published by Vermillion (a UK
imprint of Ebury Press and Random House; 1997; ISBN 0 09 186413 5; 204
pages, £8.99). Reviewed by Nicholas Albery.

The rights of the dying as listed in this book are as follows:

The right to be treated as a living human being.

'The right to maintain a sense of hopefulness, however changing its
focus may be.'

The right to maintain a sense of hopefulness, however changing its focus
may be.

The right to be cared for by those who can maintain a sense of
hopefulness, however changing this may be.

The right to express feelings and emotions about death in one's own way.

The right to participate in all decisions concerning one's care.

The right to be cared for by compassionate, sensitive, knowledgeable
people who will attempt to understand one's needs.

The right to expect continuing medical care, even though the goals may
change from 'cure' to 'comfort' goals.

The right to have all questions answered honestly and fully.

The right to seek spirituality.

The right to be free of physical pain.

The right to express feelings and emotions about pain in one's own way.

The right of children to participate in death.

The right to understand the process of death.

The right to die.

The right to die in peace and dignity.

The right not to die alone.

The right to expect that the sanctity of the body will be respected
after death.
These are all very well as far as they go, but they do seem rather to
miss out on the point of making such declarations, which should surely
be to give current practices a profound shove in the desired direction.
Some of the above rights are unpolitical and unspecific and they beg too
many questions. Does the "right to die" for instance, imply a right to
euthanasia? The author seems unclear on this point. As for the "right
not to die alone", what about those who would prefer to be left alone,
just as some animals prefer to be alone in their dying?

And some of the rights would seem to require a degree of divine
intervention beyond the power of doctors. There can hardly be a "right
to die in peace and dignity" since this depends on a medley of
circumstances, such as the character of the person who is dying and the
nature of the disease. As David Kessler himself writes in the body of
the text: "Few people have a peaceful death ... Many dying people appear
to be struggling toward the end ... It is not unusual for a dying person
to let out a loud yell that seems to come from deep within at the moment
of death."

Compare the above with the following list of rights prepared in 1993 by
the Natural Death Centre:

A Declaration of the Rights of the Person Dying at Home
I have the right to sufficient support from the National Health Service
and the community to enable me to die at home, if I so wish, whether or
not I have relatives to care for me.

I have the right not to die alone; although with the right to be left
alone, if desired.

'I have the right to expect the local priest to ask the neighbourhood to
support me and those caring for me'

I have the right to expect the local priest or other community leader to
ask the neighbourhood to support me and those caring for me.

I have the right to have 'midwives for the dying' or their equivalent to
attend to my physical, emotional and spiritual needs.

I have the right to the same expertise of pain relief as I would obtain
if occupying a hospital or hospice bed.

I have the right not to be taken without my consent to hospital as my
condition deteriorates, or, if a hospital operation is required to
relieve pain, I have the right to be brought home again afterwards.

I have the right to have any Living Will I have signed respected and, if
not fully conscious myself, to have the wishes of my appointed proxy
respected.

I have the right to reject heart stimulants, blood transfusions or other
medical interventions to prolong my life.

I have the right, to the extent that I so wish, to be told the truth
about my condition and about the purposes of, alternatives to, and
consequences of, any proposed treatments.

I have the right to fast as death approaches, if I so desire, without
being subjected to forced feeding in any form.

I have the right to discuss my death and dying, my funeral or any other
related matters openly with those caring for me.

I have the right to as conscious and dignified a death as possible in
the circumstances.

I have the right, if I so express the wish and if the circumstances
allow, for my body to remain undisturbed at home after death for a
period, and for my funeral to be handled by my relatives and friends, if
they so desire, without intervention by funeral directors.
The differences here are that many of these rights would extend into new
territory and would represent advances on current practice and are
tightly enough worded so that it would be clear if they were being
broken.

Nevertheless, the rights in Kessler's book are merely chapter headings,
loose pegs on which to hang a useful account of his experience from
working in a hospice environment in the States and his advice regarding
death and dying.