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SHANTHALLAYA HOSPICE
Shanthallaya Hospice is a home for Palliative care that takes care of the advanced
terminally ill patients. It is neither a hospital nor a home, but is in fact both, offering the
specialized care of a hospital together with the love of a home. Hospice care is a
palliative care given to individuals who are terminally ill with unexpected survival of 6
months or less. The focus on hospice care is on meeting the physical, emotional, and
spiritual needs of the dying individuals while fostering the highest quality of life possible.
Shanthallaya hospice is a Non Profitable public/charitable trust, in association with the
congregation of sisters of cross of chavanod, and Trichy Palliative care Association. It is
registered under the Societies Registration Act of Tamilnadu.
MISSION OF THE ORGANIZATION
To provide end of life care with tender love that enables people in
shanthallaya to die with dignity in spite of life threatening illness.
VISION OF THE ORGANIZATION
To creates togetherness among the medical personnel, community workers,
philanthropists, social workers and to grow as replicable model hospice care with
enriched professionalism, preparedness and acceptance to face death.
OBJECTIVES OF THE ORGANIZATION
The main aim or objectives of the organization are
1. To care for the advanced and terminally ill people.
2. To offer palliative and hospice care to all who need it irrespective of
community, caste or creed.
3. To give preference to poor and the needy.
4. To give care totally at free of cost.

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ADMINISTRATIVE SET UP OF THE ORGANIZATION
Managing trustee
(Dr. K. Govindaraja)
Executive Trustee
(Mrs. Vijayalakshmi Sasidharan)
Trustees
(Mr. R. Prabhakar)
(Dr. V. Uma Shankar)
(Mr. A. Balasubramaniyan)
(Dr. (SR) Mariakamalam)
(Dr. D. Mageshwaran)
Doctors
Nurses
Volunteers
Social workers
Ayahs





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FACILITIES AVAILABLE IN THE AGENCY
They have both inpatient and outpatient service in the organization.
Outpatient service
The outpatient can consult the agency staff nurses at any day between Monday
to Saturday between 2.00pm 4.00pm and the medicines are provided at concessional
rate.
Inpatient service
Severely symptomatic patients are admitted for intensive management and
care all through the hours. Terminal care is provided if it becomes difficult for families to
manage at home. For the inpatients the medicines and foods are provided at free of cost.
OTHER SERVICES OF THE AGENCY
The care is given to make the patients as symptom free and comfortable as
possible. The needs of the terminally ill people are: medical, nursing, mental, social,
spiritual and financial. These needs are met with the team effort, each member of team
looking after to the needs of the patients. The team consists of doctors, nurses, volunteers
and spiritual advisors to offer total care to the patients.
Symptomatic care
The relief of distressing symptom is their main aim of the agency. Once the
patient is free from all symptoms like breathing difficulty, nausea, sleeplessness etc., they
can attend to their other needs. Symptomatic care is therefore individualized to the need
of the patient.



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Pain control
Pain is first evaluated to detect it cause, site and intensity. It is then graded as
mild, moderate and severe. For pain NSAIDS are given, for moderate pain mild opiates
like codine is given and for severe pain moderate opiates like morphine is given. These
opiates are given every four hours for a cumulative effect and constantly monitored.
Occupational therapy
Small works are given to patients like doing decorations, writing articles,
paintings etc, under the supervision of the occupational therapists.
Rehabilitation services
Whenever a patient is handicapped in anyway such as swelling in the limb,
stiffness etc rehabilitation services like odema, physiotherapy etc are given. They are also
provided with appliances like walker etc.
Relaxation facilities
Music and television facilities are provided and various games are also
conducted to entertain the patients.
Spiritual support system
Spiritual counselors for each religion are invited to interact with patients when
needed.
VOLUNTEER PROGRAMME
They also invite people to become the volunteers of the agency. To become
volunteers, the individual must submit a brief personnel resume and a filled
questionnaire. The committee studies the resumes and selects the individual who has the
potential to be a volunteer.

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FUNCTIONS OF VOLUNTEER
The main functions of the volunteers are
1. To help in the management.
2. To interact with the patients.
3. To interact with the relatives of the patients.
PROCEDURE FOR ADMISSION OF A PATIENT
There are certain conditions for admitting a patient. They are
1. Only terminally ill patients are admitted.
2. Care is provided to the patients who are not given care by the family.
3. The patients should be referred by any doctors.
4. All records and reports should be brought by the patients.
SOURCES OF FUNDS FOR THE AGENCY
The main sources of funds for the agency are foreign and public funds. The
annual audited accounts are submitted to the income tax authorities and charity
commissioner.
ROLE OF SOCIAL WORKER IN THE AGENCY
The social worker helps the person and the family deal with the personal and
social problems of illness, disability and impending death.
1. Symptom Management- Physical symptom management, such as relaxation
exercises to help with nausea or pain, is just one example of the services
that social workers provide.
2. Psychological and Spiritual Stress- Psychological/spiritual stressors such as
anxiety, guilt, or depression can be addressed and managed through counseling
education, or short-term psychological techniques.

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3. Ethical Dilemmas- Ethical dilemmas (such as withdrawing or withholding
treatment) may also arise, and social workers are adept at problem solving,
advocacy and facilitating the proper resources to find solutions that are helpful
for each family.
4. Financial Stress- Financial concerns are often an issue at the end of life, and
this is another area where social workers are extremely knowledgeable and
successful at helping people navigate resources such as health insurance
coverage, medical costs, and bills, or accessing disability income.
5. Advance Care Planning- Assistance with advance care planning to ensure
that all treatments meet the wishes of the people receiving care is also within
the purview of social work intervention. Advance care planning entails making
decisions about treatment in end of care and funeral planning, and
communicating this with loved ones and in legal documentation.
6. Grief and Bereavement- Coping with loss and the ensuing grief process is
another area in which social workers are well versed. Dealing with the intense
emotions associated with grief can be overwhelming without the proper
support and information. Social workers have information and skills that help
facilitate grief and help people avoid obstacles that can lead to more
complicated reactions like depression.
CONCLUSION
One aspect of the theme is about giving people affected by life-limiting illness of
all ages a voice to help them overcome the isolation that illness can cause, and to be seen
as people rather than patients. The hospice focus is not on treatment, but on pain and
symptom management, comfort measures, acknowledging that the individual will die,
supporting the family, and trying to provide the best quality of life for the remaining
days.


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CANCER
Cancer is the general name for a group of more than 100 diseases in which cells in
a part of the body begin to grow out of control. Although there are many kinds of cancer,
they all start because abnormal cells grow out of control. Untreated cancers can cause
serious illness and even death. Cancer starts when cells in a part of the body start to grow
out of control. There are many kinds of cancer, but they all start because of out-of-control
growth of abnormal cells. Cancer cell growth is different from normal cell growth.
Instead of dying, cancer cells continue to grow and form new, abnormal cells. Cancer
cells can also invade (grow into) other tissues, something that normal cells cannot do.
Growing out of control and invading other tissues are what makes a cell a cancer cell.
Cells become cancer cells because of damage to DNA. DNA is in every cell and
directs all its actions. In a normal cell, when DNA gets damaged the cell either repairs the
damage or the cell dies. In cancer cells, the damaged DNA is not repaired, but the cell
doesnt die like it should. Instead, this cell goes on making new cells that the body does
not need. These new cells will all have the same damaged DNA as the first cell does.
People can inherit damaged DNA, but most DNA damage is caused by mistakes that
happen while the normal cell is reproducing or by something in our environment.
Sometimes the cause of the DNA damage is something obvious, like cigarette smoking.
But often no clear cause is found.
In most cases the cancer cells form a tumor. Some cancers, like leukemia, rarely
form tumors. Instead, these cancer cells involve the blood and blood-forming organs and
circulate through other tissues where they grow. Cancer cells often travel to other parts of
the body, where they begin to grow and form new tumors that replace normal tissue. This
process is called metastasis. It happens when the cancer cells get into the bloodstream or
lymph vessels of our body.


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Tumors can be benign or malignant
Benign tumors are not cancer:
Benign tumors are rarely life-threatening.
Generally, benign tumors can be removed, and they usually do not grow back.
Cells from benign tumors do not invade the tissues around them.
Cells from benign tumors do not spread to other parts of the body.
Malignant tumors are cancer:
Malignant tumors are generally more serious than benign tumors. They may be
life-threatening.
Malignant tumors often can be removed, but sometimes they grow back.
Cells from malignant tumors can invade and damage nearby tissues and organs.
Cells from malignant tumors can spread (metastasize) to other parts of the body.
Cancer cells spread by breaking away from the original (primary) tumor and
entering the bloodstream or lymphatic system. The cells can invade other
organs, forming new tumors that damage these organs. The spread of cancer is
called metastasis.

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GENERAL CANCER SIGNS AND SYMPTOMS
Unexplained weight loss
Most people with cancer will lose weight at some point. When you lose weight
with no known reason, it's called an unexplained weight loss. An unexplained weight loss
of 10 pounds or more may be the first sign of cancer. This happens most often with
cancers of the pancreas, stomach, esophagus, or lung.
Fever
Fever is very common with cancer, but it more often happens after cancer has
spread from where it started. Almost all patients with cancer will have fever at some
time, especially if the cancer or its treatment affects the immune system. This can make it
harder for the body to fight infection. Less often, fever may be an early sign of cancer,
such as blood cancers like leukemia or lymphoma.



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Fatigue
Fatigue is extreme tiredness that does not get better with rest. It may be an
important symptom as cancer grows. It may happen early, though, in cancers like
leukemia. Some colon or stomach cancers can cause blood loss. This is another way
cancer can cause fatigue.
Pain
Pain may be an early symptom with some cancers like bone cancers or testicular
cancer. A headache that does not go away or get better with treatment may be a symptom
of a brain tumor. Back pain can be a symptom of cancer of the colon, rectum, or ovary.
Most often, pain due to cancer is a symptom of cancer that has already spread from where
it started (metastasized).
Skin changes
Along with cancers of the skin, some other cancers can cause skin symptoms or signs
that can be seen. These signs and symptoms include:
Darker looking skin (hyperpigmentation)
Yellowish skin and eyes (jaundice)
Reddened skin (erythema)
Itching (pruritis)
Excessive hair growth





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SIGNS AND SYMPTOMS OF CERTAIN CANCERS
Changes in bowel or bladder functions
Long-term constipation, diarrhea, or a change in the size of the stool may be a sign
of colon cancer. Pain when passing urine, blood in the urine, or a change in bladder
function (such as needing to pass urine more or less often than usual) could be related to
bladder or prostate cancer. Report any changes in bladder or bowel function to a doctor.
Sores that do not heal
Skin cancers may bleed and look like sores that do not heal. A long-lasting sore in
the mouth could be an oral cancer. This should be dealt with right away, especially in
people who smoke, chew tobacco, or often drink alcohol. Sores on the penis or vagina
may either be signs of infection or an early cancer, and should be checked by a doctor.
White patches
White patches inside the mouth and white spots on the tongue may be leukoplakia.
Leukoplakia is a pre-cancerous area that is caused by frequent irritation. It is often caused
by smoking or other tobacco use. People who smoke pipes or use oral or spit tobacco are
at high risk for leukoplakia. If it is not treated, leukoplakia can become oral cancer. Any
long-lasting mouth changes should be checked by a doctor or dentist right away.

Unusual bleeding
Unusual bleeding can happen in early or advanced cancer. Blood in the sputum (phlegm)
may be a sign of lung cancer. Blood in the stool (or a dark or black stool) could be a sign
of colon or rectal cancer. Cancer of the cervix or the endometrium(lining of the uterus)
can cause abnormal vaginal bleeding. Blood in the urine may be a sign of bladder or
kidney cancer. A bloody discharge from the nipple may be a sign of breast cancer.


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Thickening or lump in the breast or other parts of the body
Many cancers can be felt through the skin. These cancers occur mostly in the
breast, testicle, lymph nodes (glands), and the soft tissues of the body. A lump or
thickening may be an early or late sign of cancer and should be reported to a doctor,
especially if you've just found it or notice it has grown in size.

Indigestion or trouble swallowing
Indigestion or swallowing problems may be signs of cancer of the esophagus (the
swallowing tube that goes to the stomach), stomach, or pharynx (throat). But like most
symptoms on this list, they are most often caused by something other than cancer.

RISK FACTORS
Doctors often cannot explain why one person develops cancer and another does
not. But research shows that certain risk factors increase the chance that a person will
develop cancer. These are the most common risk factors for cancer:
Growing older
Tobacco
Sunlight
Ionizing radiation
Certain chemicals and other substances
Some viruses and bacteria
Certain hormones
Family history of cancer
Alcohol
Poor diet, lack of physical activity, or being overweight

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Many of these risk factors can be avoided. Others, such as family history, cannot be
avoided. People can help protect themselves by staying away from known risk factors
whenever possible. Over time, several factors may act together to cause normal cells to
become cancerous. When thinking about the risk of getting cancer, these are some things
to keep in mind
Not everything causes cancer.
Cancer is not caused by an injury, such as a bump or bruise.
Cancer is not contagious. Although being infected with certain viruses or bacteria
may increase the risk of some types of cancer, no one can "catch" cancer from
another person.
Having one or more risk factors does not mean that you will get cancer. Most people
who have risk factors never develop cancer.
Some people are more sensitive than others to the known risk factors.
Growing Older
The most important risk factor for cancer is growing older. Most cancers occur in
people over the age of 65. But people of all ages, including children, can get cancer, too.
Tobacco
Tobacco use is the most preventable cause of death. Each year, more than 180,000
Americans die from cancer that is related to tobacco use.
Using tobacco products or regularly being around tobacco smoke (environmental
or secondhand smoke) increases the risk of cancer.
Smokers are more likely than nonsmokers to develop cancer of the lung, larynx
(voice box), mouth, esophagus, bladder, kidney, throat, stomach, pancreas, or
cervix. They also are more likely to develop acute myeloid leukemia (cancer that
starts in blood cells).

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People who use smokeless tobacco (snuff or chewing tobacco) are at increased
risk of cancer of the mouth.
Sunlight
Ultraviolet (UV) radiation comes from the sun, sunlamps, and tanning booths. It
causes early aging of the skin and skin damage that can lead to skin cancer.
Ionizing Radiation
Ionizing radiation can cause cell damage that leads to cancer. This kind of
radiation comes from rays that enter the Earth's atmosphere from outer space, radioactive
fallout, radon gas, x-rays, and other sources. Radioactive fallout can come from accidents
at nuclear power plants or from the production, testing, or use of atomic weapons. People
exposed to fallout may have an increased risk of cancer, especially leukemia and cancers
of the thyroid, breast, lung, and stomach. Radon is a radioactive gas that you cannot see,
smell, or taste. It forms in soil and rocks. People who work in mines may be exposed to
radon. In some parts of the country, radon is found in houses. People exposed to radon
are at increased risk of lung cancer.
Medical procedures are a common source of radiation:
Doctors use radiation (low-dose x-rays) to take pictures of the inside of the body.
These pictures help to diagnose broken bones and other problems.
Doctors use radiation therapy (high-dose radiation from large machines or from
radioactive substances) to treat cancer.
The risk of cancer from low-dose x-rays is extremely small. The risk from radiation
therapy is slightly higher. For both, the benefit nearly always outweighs the small risk.


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Certain Chemicals and Other Substances
People who have certain jobs (such as painters, construction workers, and those in the
chemical industry) have an increased risk of cancer. Many studies have shown that
exposure to asbestos, benzene, benzidine, cadmium, nickel, or vinyl chloride in the
workplace can cause cancer.
Family History of Cancer
Most cancers develop because of changes (mutations) in genes. A normal cell may
become a cancer cell after a series of gene changes occur. Tobacco use, certain viruses, or
other factors in a person's lifestyle or environment can cause such changes in certain
types of cells. Some gene changes that increase the risk of cancer are passed from parent
to child. These changes are present at birth in all cells of the body. It is uncommon for
cancer to run in a family. However, certain types of cancer do occur more often in some
families than in the rest of the population. For example, melanoma and cancers of the
breast, ovary, prostate, and colon sometimes run in families. Several cases of the same
cancer type in a family may be linked to inherited gene changes, which may increase the
chance of developing cancers. However, environmental factors may also be involved.
Most of the time, multiple cases of cancer in a family are just a matter of chance.
Alcohol
Having more than two drinks each day for many years may increase the chance of
developing cancers of the mouth, throat, esophagus, larynx, liver, and breast. The risk
increases with the amount of alcohol that a person drinks. For most of these cancers, the
risk is higher for a drinker who uses tobacco.



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Poor Diet, Lack of Physical Activity, or Being Overweight
People who have a poor diet, do not have enough physical activity, or are
overweight may be at increased risk of several types of cancer. For example, studies
suggest that people whose diet is high in fat have an increased risk of cancers of the
colon, uterus, and prostate. Lack of physical activity and being overweight are risk
factors for cancers of the breast, colon, esophagus, kidney, and uterus.
DIAGNOSIS
Lab Tests
Tests of the blood, urine, or other fluids can help doctors make a diagnosis. These
tests can show how well an organ (such as the kidney) is doing its job. Also, high
amounts of some substances may be a sign of cancer. These substances are often
called tumor markers. However, abnormal lab results are not a sure sign of cancer.
Doctors cannot rely on lab tests alone to diagnose cancer.
Imaging Procedures
Imaging procedure creates pictures of areas inside your body that help the doctor
see whether a tumor is present. These pictures can be made in several ways:
X-rays: X-rays are the most common way to view organs and bones inside the body.
CT scan: An x-ray machine linked to a computer takes a series of detailed pictures
of our organs.
Radionuclide scan: We receive an injection of a small amount of radioactive
material. It flows through your bloodstream and collects in certain bones or organs. A
machine called a scanner detects and measures the radioactivity. The scanner creates
pictures of bones or organs on a computer screen or on film. Your body gets rid of
the radioactive substance quickly.

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Ultrasound: An ultrasound device sends out sound waves that people cannot hear.
The waves bounce off tissues inside your body like an echo. A computer uses these
echoes to create a picture called a sonogram.
MRI: A strong magnet linked to a computer is used to make detailed pictures of
areas in your body. Your doctor can view these pictures on a monitor and can print
them on film.
PET scan: You receive an injection of a small amount of radioactive material. A
machine makes pictures that show chemical activities in the body. Cancer cells
sometimes show up as areas of high activity.
Biopsy
In most cases, doctors need to do a biopsy to make a diagnosis of cancer. For a
biopsy, the doctor removes a sample of tissue and sends it to a lab. A pathologist looks at
the tissue under a microscope. The sample may be removed in several ways:
With a needle: The doctor uses a needle to withdraw tissue or fluid.
With an endoscope: The doctor uses a thin, lighted tube (an endoscope) to look at
areas inside the body. The doctor can remove tissue or cells through the tube.
With surgery: Surgery may be excisional or incisional.
In an excisional biopsy, the surgeon removes the entire tumor. Often some of the
normal tissue around the tumor also is removed.
In an incisional biopsy, the surgeon removes just part of the tumor.
TREATMENT
Many people with cancer want to take an active part in making decisions about
their medical care. It is natural to want to learn all you can about your disease and
treatment choices. However, shock and stress after the diagnosis can make it hard to
think of everything you want to ask the doctor. It often helps to make a list of questions

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before an appointment. To help remember what the doctor says, you may take notes or
ask whether you may use a tape recorder. Some people also want to have a family
member or friend with them when they talk to the doctor - to take part in the discussion,
to take notes, or just to listen. You do not need to ask all your questions at once. You
will have other chances to ask the doctor or nurse to explain things that are not clear and
to ask for more information.
Surgery
In most cases, the surgeon removes the tumor and some tissue around it.
Removing nearby tissue may help prevent the tumor from growing back. The surgeon
may also remove some nearby lymph nodes. The side effects of surgery depend mainly
on the size and location of the tumor, and the type of operation. It takes time to heal after
surgery. The time needed to recover is different for each type of surgery. It is also
different for each person. It is common to feel tired or weak for a while. Most people are
uncomfortable for the first few days after surgery. However, medicine can help control
the pain.
Radiation Therapy
Radiation therapy (also called radiotherapy) uses high-energy rays to kill cancer cells.
Doctors use several types of radiation therapy. Some people receive a combination of
treatments:
External radiation: The radiation comes from a large machine outside the body.
Most people go to a hospital or clinic for treatment 5 days a week for several weeks.
Internal radiation (implant radiation or brachytherapy): The radiation comes from
radioactive material placed in seeds, needles, or thin plastic tubes that are put in or
near the tissue. The patient usually stays in the hospital. The implants generally
remain in place for several days.

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Systemic radiation: The radiation comes from liquid or capsules containing
radioactive material that travels throughout the body. The patient swallows the liquid
or capsules or receives an injection. This type of radiation therapy can be used to
treat cancer or control pain from cancer that has spread to the bone. Only a few types
of cancer are currently treated in this way.
The side effects of radiation therapy depend mainly on the dose and type of radiation you
receive and the part of your body that is treated. For example, radiation to your abdomen
can cause nausea, vomiting, and diarrhea.
Chemotherapy
Chemotherapy is the use of drugs that kill cancer cells. Most patients receive
chemotherapy by mouth or through a vein. Either way, the drugs enter the bloodstream
and can affect cancer cells all over the body. Chemotherapy is usually given in cycles.
People receive treatment for one or more days. Then they have a recovery period of
several days or weeks before the next treatment session. Most people have their
treatment in an outpatient part of the hospital, at the doctor's office, or at home. Some
may need to stay in the hospital during chemotherapy. Side effects depend mainly on the
specific drugs and the dose. The drugs affect cancer cells and other cells that divide
rapidly:
Blood cells: When drugs damage healthy blood cells, you are more likely to get
infections, to bruise or bleed easily, and to feel very weak and tired.
Cells in hair roots: Chemotherapy can cause hair loss. Your hair will grow back, but
it may be somewhat different in color and texture.
Cells that line the digestive tract: Chemotherapy can cause poor appetite, nausea
and vomiting, diarrhea, or mouth and lip sores.
Some drugs can affect fertility. Women may be unable to become pregnant, and men may
not be able to father a child.

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Hormone Therapy
Some cancers need hormones to grow. Hormone therapy keeps cancer cells from
getting or using the hormones they need. It is systemic therapy.
Hormone therapy uses drugs or surgery:
Drugs: The doctor gives medicine that stops the production of certain hormones or
prevents the hormones from working.
Surgery: The surgeon removes organs (such as the ovaries or testicles) that make
hormones.
The side effects of hormone therapy depend on the type of therapy. They include weight
gain, hot flashes, nausea, and changes in fertility. In women, hormone therapy may make
menstrual periods stop or become irregular and may cause vaginal dryness. In men,
hormone therapy may cause impotence, loss of sexual desire, and breast growth or
tenderness.
Biological Therapy
Biological therapy is another type of systemic therapy. It helps the immune system
(the body's natural defense system) fight cancer. For example, certain patients with
bladder cancer receive BCG solution after surgery. The doctor uses a catheter to put the
solution in the bladder. The solution contains live, weakened bacteria that stimulate the
immune system to kill cancer cells. BCG can cause side effects. It can irritate the bladder.
Some people may have nausea, a low-grade fever, or chills. Most other types of
biological therapy are given through a vein. The biological therapy travels through the
bloodstream. Some people get a rash where the therapy is injected. Some have flu-like
symptoms such as fever, chills, headache, muscle aches, fatigue, weakness, and nausea.
Biological therapy also can cause more serious side effects, such as changes in blood

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pressure and breathing problems. Biological therapy is usually given at the doctor's
office, clinic, or hospital.
Stem Cell Transplantation
Transplantation of blood-forming stem cells enables patients to receive high doses
of chemotherapy, radiation, or both. The high doses destroy both cancer cells and normal
blood cells in the bone marrow. After the treatment, the patient receives healthy, blood-
forming stem cells through a flexible tube placed in a large vein. New blood cells develop
from the transplanted stem cells. Stem cells may be taken from the patient before the
high-dose treatment, or they may come from another person. Patients stay in the hospital
for this treatment. The side effects of high-dose therapy and stem cell transplantation
include infection and bleeding. In addition, graft-versus-host disease (GVHD) may occur
in people who receive stem cells from a donor. In GVHD, the donated stem cells attack
the patient's tissues. Most often, GVHD affects the liver, skin, or digestive tract. GVHD
can be severe or even fatal. It can occur any time after the transplant, even years later.
Drugs may help prevent, treat, or control GVHD.
Prevention of cancer
Cancers that are closely linked to certain behaviors are the easiest to prevent. For
example, choosing not to smoke tobacco or drink alcohol significantly lower the risk of
several types of cancer - most notably lung, throat, mouth, and liver cancer. Even if you
are a current tobacco user, quitting can still greatly reduce your chances of getting cancer.
Skin cancer can be prevented by staying in the shade, protecting yourself with a hat and
shirt when in the sun, and using sunscreen. Diet is also an important part of cancer
prevention since what we eat has been linked to the disease. Physicians recommend diets
that are low in fat and rich in fresh fruits and vegetables and whole grains. Certain
vaccinations have been associated with the prevention of some cancers. For example,
many women receive a vaccination for the human papillomavirus because of the virus's

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relationship with cervical cancer. Hepatitis B vaccines prevent the hepatitis B virus,
which can cause liver cancer. Some cancer prevention is based on systematic screening in
order to detect small irregularities or tumors as early as possible even if there are no clear
symptoms present. Breast self-examination, mammograms, testicular self-examination,
and Pap smears are common screening methods for various cancers.
MAGNITUDE OF THE PROBLEM
Population based cancer registries within the National Cancer Registry
Programme and outside the network has provided a picture of the cancer pattern in India.
There are areas, which are largely un-represented, but the general pattern seems to hold
good. Based on the cancer registry data it is estimated that there will be about 800,000
new cancers cases in India every year. At any given point there is likely to be 3 times this
load that about 240,000 cases. Cancer sites associated with tobacco form 35 to 50% of all
cancers in men and about 17% of cancers in women. These cancers are amenable to
primary prevention and can be controlled to a large extent.

CANCER EPIDEMIOLOGY
Cancer is group of diseases with similar characteristics. Cancer can occur in all
living cells in the body and different cancer types have different natural history.
Epidemiological studies have shown that 70- 90% of all cancers are environmental.
Lifestyle related factors are the most important and preventable among the environmental
exposures. Tobacco consumption either as chewing tobacco or smoking tobacco will
account for 50% of all cancers in men. Dietary practices, reproductive and sexual
practices etc will account for 20-30% of cancers. Appropriate changes in lifestyle can
reduce the mortality and morbidity from a good proportion of Cancer, Diabetes Mellitus
and Cardiovascular diseases.




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PALLIATIVE CARE
More than 75% of cancers in India present in advanced stages and Palliative care
and pain relief are essential to provide good quality life for these patients. Oral Morphine
is the mainstay of cancer pain management and this has to be made available at all
centres. The medical doctors as well as the administrators have to be sensitized and
educated about the use of Oral Morphine and the regulations have to be made simple so
that this essential drug is made available to those in pain. Half way homes and Hospices
may be considered through Non Governmental Agencies as well as other sources, but
they can work well when they are attached to a major cancer treatment centre.


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HOSPICE AND PALLIATIVE CARE
Many believe a hospice is a place where people die. Others simply associate the
word with death and feel uncomfortable. Those who have used hospice and palliative
care think of them as care giving in the finest tradition: care that is both competent and
compassionatecare provided to people facing death by people unafraid to face death. In
truth, hospice and palliative care are all of the above and much more. The word hospice
comes from the Latin word hospitium, meaning hospitality, and from the old French
word hospes, or host. Websters defines hospice as a shelter or lodging for travelers,
children, or the destitute, often maintained by a monastic order. Today, it is a word used
to describe a program of care for individuals and their families facing a life-limiting
illness. The National Hospice and Palliative Care Organization (NHPCO, 2000) describes
hospice and palliative care thus:

Hospice provides support and care for persons in the last phases of an incurable
disease so that they may live as fully and as comfortable as possible. Hospice recognizes
that the dying process is a part of the normal process of living and focuses on enhancing
the quality of remaining life. Hospice affirms life and neither hastens nor postpones
death. Hospice exists in the hope and belief that through appropriate care, and the
promotion of a caring community sensitive to their needs that individuals and their
families may be free to attain a degree of satisfaction in preparation for death. Hospice
recognizes that human growth and development can be a lifelong process. Hospice seeks
to preserve and promote the inherent potential for growth within individuals and families
during the last phase of life. Hospice offers palliative care for all individuals and their
families without regard to age, gender, nationality, race, creed, sexual orientation,
disability, diagnosis, availability of a primary caregiver, or ability to pay.

Palliative medicine is "A concept of medical care that provides for people who are
terminally ill". The W.H.O defines Palliative care as " The active, total care of patients at
a time when their disease is no, longer responsive to curative treatment and when control

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of pain, of other symptoms and of social, psychological and spiritual problems is
paramount. Palliative care affirms life and regards dying as a natural process: it neither
hastens nor postpones death. It offers a support system to help the patient live as actively
as possible until death and help the family cope during the patient's illness and in
bereavement. Palliative Care is multi-disciplinary in its approach and encompasses the
patient, the family and the community in its scope". Hospice programs provide state-of-
the-art palliative care and supportive services to individuals at the end of their lives, their
family members, and significant others, 24 hours a day, seven days a week, in both the
home and facility-based care settings. Physical, social, spiritual, and emotional care are
provided by a clinically directed interdisciplinary team consisting of patients and their
families, professionals, and volunteers during the:
1. Last stages of an illness;
2. Dying process; and
3. Bereavement period.
The National Hospice and Palliative Care Organization (NHPCO) defines
palliative care as treatment that enhances comfort and improves the quality of an
individuals life during the last phase of life. No specific therapy is excluded from
consideration. The test of palliative care lies in the agreement between the individual,
physician(s), primary caregiver, and the hospice team that the expected outcome is relief
from distressing symptoms, the easing of pain, and/or enhancing the quality of life. The
decision to intervene with active palliative care is based on an ability to meet stated goals
rather than affect the underlying disease. An individuals needs must continue to be
assessed and all treatment options explored and evaluated in the context of the
individuals values and symptoms. The individuals choices and decisions regarding care
are paramount and must be followed at all times.

The word palliative to describe care for the dying was originally used by Dr.
Balfour Mount at the Royal Victoria Hospital in Montreal, Quebec. The word hospice in
French is understood to mean home for the destitute and was seen as an unacceptable

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term in francophone Quebec. The word palliate originates from the Greek and translates
as to cloak, meaning that when we care for the dying, our interventions are meant to
cloak or to prevent seeing or experiencing pain or other distressing symptoms.

THE HOSPICE MOVEMENT
Throughout the 20th century, modern medicine has transformed the experience of
dying from a part of daily life to a highly technological event. Before the widespread use
of antibiotics following the Second World War, people died at a younger age and with
less forewarning. Physicians could do little but visit and attend to the dying by relieving
their suffering. People were less apt to be rushed to the hospital, and they convalesced at
home with the help of their families. After the Second World War, great advances were
made in the science of medicine. Many pharmaceutical agents were developed to treat
illness, and techniques and equipment were invented to ward off the dying process. A
seemingly unconscious goal was the elimination of death. Dying patients were not
acknowledged. People died in institutions, not at home.

Many health care professionals were frustrated in this climate. Many family
members of the dying were angry at the way that care was depersonalized. Physicians
and nurses were not trained to care for the dying. Most were uncomfortable with the
notion. They tended to visit dying patients less often; unrealistic optimism led to a
conspiracy of silence, where the family and medical staff knew the truth, but withheld
it from the patient. There was a widespread belief that to tell a patient she or he was
dying would cause harm and lead to premature demise. Patients were expected to follow
physicians recommendations without question. If death occurred, it was an unintended
event. In this atmosphere of denial, many caregivers were dissatisfied. There had to be a
better way to treat the dying. The United States in the 1970s was a society undergoing
rapid change. Most institutions were being challenged, and people were experimenting
with new ways to solve old problems. Cancer patients were demanding more
participation in treatment decisions, and support groups were being formed to give

27

information and counseling. Those involved in treating dying patients began hearing
about a new approach to care being used in the United Kingdom called hospice.

BRIEF HISTORY
It is generally held that the first hospices were established in the 11th century by
the Crusaders. Until that time, incurable patients were not admitted to places of healing.
Their presence was viewed as a detriment to the healing process of others. The first
hospices were places where travelers to and from the Holy Land were cared for and
refreshed. Travelers as well as the sick and the dying were cared for. The Knights
Hospitallers of St. John of Jerusalem founded a way station in Jerusalem for sick and
weary pilgrims, but were forced by the Crusades to move on to Tyre, and then to Acre,
and eventually to the island of Cyprus.

The Hospitallers were recognized by the pope as a military order in 1113 and
gained support carrying pilgrims to and from the Holy Land. In 1309, they stormed
Rhodes and held it for two centuries. It was here that they founded a hospice hospital that
cared for the sick, for travelers, and for incurables. The knights developed a special
tradition of caring for our lords the sick and dying. They were treated royally with great
dignity and the finest foods, linens, and treatments the order could offer. The knights
themselves, having taken a vow of poverty, dined on plainer fare and were under strict
orders forbidding any mistreatment. Their spiritual foundations were nourished by their
work tending to the sick and dying. The hospice tradition of the Middle Ages passed into
history. It was reborn in the 17th century through the efforts of St. Vincent de Paul, who
founded the Sisters of Charity in Paris. The sisters opened a number of houses to care for
orphans, the poor, the sick, and the dying. The Irish Sisters of Charity founded Our
Ladys Hospice for care of the dying in Dublin. In 1900, the Irish Sisters founded a
convent in Londons East End. Their ministry included visiting the sick in their homes. In
1902, they founded St. Josephs Hospice for the dying poor in London. More than 50
years later, Cicely Saunders came to work there and developed her approaches to

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managing pain and the total needs of dying patients. Her philosophy of using a team to
treat the whole person has become the foundation for hospice care throughout the world.
Dame Saunders, who trained first as a nurse, then as a social worker, and finally as a
physician, envisioned a center for excellence in care of the dying patient. This center
included teaching and research facilities. In 1967, she opened St. Christophers Hospice
outside London in Sydenham.

As matriarch of the worldwide hospice movement, she inspired caregivers to carry
on her mission of caring for the dying. St. Christophers continues today to carry out its
mission of caring for the neighboring communities and as a beacon for hospice
development worldwide. The research and education center has continued to promote
improvement in palliative care and to share knowledge of palliative care gained from 40
years of experience. Since Cicely Saunderss death, St. Christophers has been guided by
new CEO Barbara Monroe, who as leader of psychosocial services there for many years
continues the tradition of sharing the best of palliative care with pioneers worldwide.
Hospice first came to North America in 1971. Hospice Inc., in New Haven, Connecticut,
was founded by Florence Wald, dean of nursing at Yale, and a few others following
invited lectures given by Cicely Saunders. A home care service began there in 1973. By
1980, Hospice Inc. had opened a 44-bed inpatient facility in Branford, Connecticut,
exclusively for the care of dying patients. In the mid-1970s, a small but committed
hospice movement had begun to take shape throughout the United States and Canada.
From Marin, Monterey, and Fresno in California to Tucson, Arizona; to

Boonton, New Jersey; to Montreal, Quebec, Canada; and to St. Lukes Hospital in
New York, various models of hospice care were being tested. The National Hospice
Organization was founded in 1978 and began holding annual educational conferences.
The first national directory of hospices was published in 1978, and by 1980 there were
138 provider members listed. The U.S. hospice movement had a slant distinctly toward
home care. Most Americans surveyed showed a preference for dying in their homes.

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There was a greater emphasis on use of volunteers and more focus on psychological
preparation for death than in English hospices. In the early years of the American hospice
movement, reimbursement for hospice care was limited to payment for components of
care such as acute hospitalization and home health agency services. In 1982, hospice care
was added as a Medicare benefit. This benefit eventually encouraged tremendous growth
in the number of patients served by hospices and brought some standardization to the
types of services a hospice could deliver. The most recent in-depth census data on
hospices from the NHPCO revealed that in 2008 there were about 4,700 unique locations
delivering hospice care. There were about 3,700 companies or organizations providing
hospice care with around 1,000 satellite locations. Satellite locations are multiple
locations operated by the same company. Given that there were a total of about 3,100
hospice locations in 1998 that is over 50% growth in 10 years. Approximately 93% of
hospices are Medicare certified. Hospices that are not certified for Medicare payment and
primarily use volunteers continue to operate and represent about 7% of programs
(NHPCO, 2008).

CHARACTERISTICS
These 10 characteristics have been a necessary part of every hospice, and now also
palliative care programs.
1. Patients and family are the unit of care. Hospices do not admit a patient in
isolation. They see each patient as part of a family system. Often the familys needs are
equal to or greater than the dying persons. Family means those bonded to the patient by
blood or emotional ties, that is, the patients most immediate attachment network.
2. Care is provided in the home and in inpatient facilities. The philosophy of
palliative care is to allow people to die where they want. Most people prefer to be cared
for in their homes; others need or chose to be in a facility. Hospice and palliative care
should be available to patients in all settings.
3. Symptom management is the focus of treatment. Hospice patients understand at
some level that there is no definitive cure for their illnesses. They seek relief from pain

30

and other symptoms of terminal illness. Palliative care is directed at treating the
symptoms, not curing the disease.
4. Palliative care treats the whole person. People are not just physical. Palliative
care is designed to address physical, social, psychological, spiritual, and practical needs
of patients with life-limiting illness.
5. Services are available 24 hours a day, 7 days a week. People die and have
problems at all hours of the day and night. Services must be available 24 hours a day, 7
days a week, including weekends and at 2:00 a.m. if needed.
6. Palliative care is interdisciplinary. The hospice team draws on the skills of
people in a variety of disciplines who work collaboratively in meeting the patients
various needs. The hospice and palliative care team includes physicians, nurses, social
workers and other mental health professionals, chaplains, therapists, pharmacists, and
volunteers.
7. Palliative care is physician directed. The patients attending physician must
determine that the patient has an incurable condition with a limited life expectancy and
must order all palliative care delivered. The hospice medical director oversees the care of
all hospice patients and supplements the services of the attending physician. Palliative
care specialists can provide consultative services valuable to the attending physician.
8. Volunteers are an integral part of hospice and palliative care. Those at the end
of life respond uniquely to volunteers. Volunteers work with people facing death out of
human concern. Often, they have experienced death in their lives and can appreciate how
hard it is for families to handle difficult situations.
9. Palliative care is community based care and is provided without regard to ability
to pay. Hospice and palliative care services meet the needs of people with life-limiting
illness within their communities and do not deny services on the basis of inability to pay.
When reimbursement is exhausted, care to the patient is not diminished.
10. Bereavement services are provided to families on the basis of need. Hospice
provides a program of bereavement support to all families for at least a year following a
patients death. Palliative care programs also need to provide bereavement services. Grief

31

counseling is begun before a patients death. Bereavement support may also be extended
to those grieving in the community at large, and all bereavement support should be based
on need and expressed desire for help.
THE GOALS OF PALLIATIVE CARE
For patients with active, progressive, far-advanced disease, the goals of palliative care are
To provide relief from pain and other physical symptoms
To maximize the quality of life
To provide psychosocial and spiritual care
To provide support to help the family during the patients illness and bereavement
Palliative care programs strive to provide care to a broad population of patients
with life-limiting conditions and symptom problems. Admission to a hospice program is
generally limited to those diagnosed with a life threatening illness with a limited life
span. For Medicare to pay for hospice care, a prognosis of 6 months or less is required, if
the disease runs its normal course. To become a hospice patient means that at some level
patients acknowledge that they cannot be cured of their illnesses. This is not to say that
one must accept death or abandon all hope to be served by hospice. Hospices view their
role as one that accompanies another on lifes last journey. No one knows how long any
patient has to live; one can only help them to live until death comes.

THE TEAM CONCEPT
Hospice care and palliative care are delivered by interdisciplinary teams. Unlike
most health care settings where there is a hierarchical structure, palliative care considers
all team members input to have equal value. For a given patient and family, one team
member may develop the closest relationship; it may be the home health aide, the
chaplain, the physician, the social worker, the psychologist, the nurse, or the volunteer in
whom the patient confides the most. Each patient and family served is a unique collection

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of life histories that combine to face death in different ways; to understand how best to
treat each patientfamily unit requires many different perspectives.

Nurses
Nurses could be thought of as the backbone of palliative care. This is meant in the
true anatomical sense. They keep all parts of palliative care moving. Nurses often
function as case managers in palliative care. In this, they are responsible for making sure
all disciplines and activities are moving in the right direction. Without nurses, there
would be no effective symptom management, there would be no coordination of care,
there would be little education and preparation for patients and familiesthere really
would be no patient care! Nursing is the principal means of delivering patient care in
palliative care. The principal activities of palliative care nursing can be described as
educating, treating, and managing.

The largest single activity that palliative care nurses perform is education. In
palliative care, caregivers are encouraged and empowered to do as much as possible for
the patient and often more than they thought possible. Palliative care nurses show
families and caregivers how to provide hands-on patient care. They provide a road map
for them on what to expect as the disease progresses and what to do. This removes fear
and uncertainty and allows those caring to stay involved up until death. After death, those
who were able to provide care have a lower mortality rate and lower health care
utilization post death (Christakis & Iwashyna, 2003; Connor, 1996a). Hands-on contact
with the dying person alleviates feelings of guilt and makes the experience of the
patients death more visceral and real.

Palliative care nurses treat patients. Treatments for patients with life limiting
conditions vary widely but are generally focused on relieving distressing symptoms. All
treatments are based on accurate assessment. Good hospice care nurses have learned to
do in-depth assessments of patients needs. Examples of palliative care nursing

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procedures, in addition to the above, include changing dressings, administering
medication, collecting specimens, and performing enemas, colostomy irrigation, tube
insertions, impaction removal, equipment management, and postmortem care. Hospice
nurses are case managers. They are responsible for making sure that all disciplines are
involved in and meeting the patients needs. They are responsible for developing the
largest part of the care plan. They are the link to the patients primary care physician,
seeing that all orders for care are obtained. The palliative care nurse works with the social
worker to make sure all psychological and social concerns are addressed. She or he works
with the chaplain to see that all spiritual concerns are being responded to. The nurse
supervises the home health aide providing personal care and hears from the volunteer
about support needs. Hospice nurses see that the durable medical equipment the patient
needs is ordered and delivered. They bring out or order all medical supplies needed,
including eggcrate mattresses, adult diapers, dressings, catheters, and so forth. When
medications are needed, they arrange for them to be provided. If the patient needs
hospitalization for respite or symptom management, the nurses arrange for transportation
and admission, prepare a transfer summary, and give a report to the facility. They visit
the patient when he or she is hospitalized and continue the palliative plan of care during
the inpatient stay.

Social Workers
Facing death has a profound psychological impact on the family. The person dying
gradually confronts the loss of everything. Good palliative care is distinguished by
recognition of the psychological and social needs of patients and their families. Hospice
and palliative care workers have responded to these needs mainly through provision of
social work services. The social worker is the primary provider of emotional support for
the patient and family. He or she functions as both counselor and practical guide to the
dying process. On the practical side, social workers help arrange for community
resources that may help everyone cope better. Social workers help patients and families
to face the difficult decisions about discontinuation of treatment and life support, funeral

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planning and estate planning. On the counseling side, the social worker can go as far as
the patient and family wish. Some families are severely disrupted and require in-the home
family therapy. Most everyone needs to ventilate feelings that often are unacceptable to
express. The social worker is an outsider who can share the burden. A non threatening
way for the patient to help begin to deal with his or her impending loss is to do life
review. The social worker can help the patient to do an oral history of his or her life,
which includes important milestones in the family, values or beliefs to impart,
instructions for survivors, and genealogical information.

Providing counseling or emotional support can be done by any of the palliative
care disciplines, and in some programs counselors, psychologists, marriage and family
counselors, psychiatric nurses, or others may provide these services. The advantage of
using social workers is that they can provide the needed case and resource management
services along with psychological services. In effect, you get two services for the price of
one. Social work has become a vital and core part of the palliative care team.

Physicians
The physician member of the palliative care team is most often the patients
attending physician. As a team member, he or she helps formulate and approve the
patients plan of care. The physician approves all orders and helps to achieve symptom
management. Along with the palliative care medical director, the physician is responsible
for determining the patients prognosis. The relationship of the patients physician to the
palliative care team varies greatly. Some physicians work in a very collaborative fashion,
and others resist input and insist on controlling all aspects of care. The degree of
cooperation depends on the physicians practice patterns and on his or her experience
using palliative care services. If the doctor adopts a uni disciplinary approach to practice,
there is little room for collaboration.
If the physicians experience with palliative care has been positive, he or she is
more likely to refer and to trust palliative care staff input. If palliative care workers

35

demonstrate professionalism and their recommendations result in better patient care, most
physicians can be won over. Because physicians are responsible for any order they
approve, they must have a high level of trust to sign off. As this trust level builds, they
appreciate that palliative care can shoulder much of the burdens of caring for a dying
patient. After approving a patients entry into hospice or palliative care, the attending
physician may not see the patient as often. The palliative care staff becomes the
physicians eyes and ears. They report any change in condition and give periodic updates.
The palliative care plan of care is reviewed and approved periodically. If there is an
unresolved problem or symptom, the patient is sent in for an office appointment or
sometimes directly admitted to the hospital for more extensive assessment and treatment.
All efforts and diagnostics are aimed at symptom relief.

The medical director works in concert with the attending physician. In most cases,
the medical director does not take over the patients care. Exceptions to this are when the
attending physician asks for palliative care to provide all physician services, when there
is no other physician to direct the patients care, or when the patient requests the
palliative care program to provide attending physician services. Hospice and palliative
care programs prefer to work with other community physicians in caring for their
patients. If the program took over all the physician care, this could threaten the medical
community, and there would be little opportunity to educate community physicians about
palliative care. The medical director usually serves as a consultant to the medical
community. If there is a problem with the way care is being managed, the medical
director can intercede for the palliative care staff to help correct the situation. Most
attending physicians will not make home visits, and palliative care patients often cannot
travel comfortably. The medical director can see the patient at home and give treatment
recommendations to the attending physician.

The primary role of the medical director is to oversee the medical care of all
palliative care patients and the palliative care staffs provision of clinical care. This

36

includes providing education for palliative care staff and being a resource at all
interdisciplinary team meetings. The medical directors role extends into review of all
clinical policies, procedures, and protocols. There is even a role as part of the marketing
efforts. Community physicians should know that the medical director is involved in the
supervision of palliative care staff and will ensure that the highest quality of care is
delivered. If the specialist hospice and palliative medicine physician is respected by the
local medical community, they will encourage physicians to use palliative care to care for
their dying patients. Hospice and palliative medicine has now been accepted as a
recognized sub specialization by the American Board of Medical Specialties. Many
specialties including internal medicine and family medicine have included hospice and
palliative care as a sub specialization. Having the training required to qualify as a hospice
and palliative medicine subspecialist is a good indication to both the medical community
and the public that the physician is competent to provide quality palliative care.

Counselors
The role of counseling in palliative care needs to be highlighted even though it is
not the exclusive responsibility of any one discipline. In fact, all disciplines have a role in
counseling the patient and family. By counseling, we mean the provision of education
and emotional support. It is the giving of guidance or advice through an exchange of
opinions and ideas. There are many misconceptions about terminal illness and death.
Facing death is a frightening prospect for most patients and families. Usually, the more
information they have, the better they are able to cope. Palliative care workers accept as a
major charge the provision of education. Families who are prepared for the symptoms
surrounding death feel more in control and confident in their care giving. Often, however,
more is needed than education and support. Palliative care workers may need to plan
interventions that help patients and families to overcome problems or maladaptive
coping. These interventions can be as simple as a relaxation exercise or as complex as
having the whole team applies different psychological support strategies for each
individual family member. Current mental health treatment offers many different tools

37

that can help palliative care workers in doing short-term counseling and intervention. For
example, solutions therapy can help families focus on how they have overcome other
obstacles and draw on their adaptive resources.

Psychologists and psychiatrists have usually played an ancillary role in hospice
care and are more often utilized in palliative care programs. Since the social worker can
meet most counseling needs and because hospice is obligated to pay for all counseling
services related to the terminal condition, not many psychologists are part of core hospice
teams. However, they can be most useful in case consultations, especially for families
with complex dynamics or preexisting mental health conditions. Psychiatrists can bill for
care as consulting physicians under hospice, and psychologists can sometimes bill
separately from hospice for preexisting or unrelated mental health treatment.

Various forms of family therapy are often used in palliative care programs to help
families cope. Palliative care psychosocial assessments often include a genogram, which
usually shows a three-generational description of a family including births, deaths,
divorces, or other family allegiances and rivalries. How people handle death in a family is
often colored by multigenerational factors. Discussion of patient care, symptom
management, and the dying process is likely to arouse strong feelings that also need
expression. Palliative care workers provide emotional support during the process of
preparing the patient and family for death. They have to be sensitive to how much the
family can absorb without becoming overwhelmed. The last thing anyone wants is for the
patient or family to be forced to deal with painful facts they are unprepared for and then
to receive no help with their emotional responses. Lack of preparation and follow-up is
not an uncommon scenario in the health care system. What distinguishes palliative care is
sensitivity to these issues. Good palliative care practice always involves meeting the
patient and family where they are in their readiness to hear information.


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Palliative care workers never want to beat people over the head with information.
They would not want to be accused of being full of doom and gloom. Rather, palliative
care workers want families to eagerly anticipate their visits. Some families make it clear
that they never want to discuss dying. Others are eager for any and all information about
the process. The ability to understand where the patient and family are in their desire for
education and support is crucial to good palliative care. Palliative care workers must be
very adept at this assessment and empathetic to the emotional state of the patient and
family. The role of counseling is most often associated with the teams social worker.
Social workers are responsible for assessing the family system, including levels of
emotional distress and coping styles. They have much information to impart and are often
the ones to address painful issues such as treatment wishes, advance directives, and
funeral planning. Nurses also play a prominent role in counseling. It is the nurse who
does the teaching of physical care and signs and symptoms of approaching death. Nurses
view counseling as a major intervention, and many nursing diagnoses include correcting
knowledge deficits. As an extension of the nurse, the home health aide is often called on
to provide emotional support as the patient or family processes the information and
emotions surrounding death.

Palliative care chaplains, of course, mainly provide counseling around the spiritual
aspects of facing death. Sometimes other team members are also called on to provide
spiritual support. The aide or nurse may be asked to pray with the patient, or the
volunteer may discuss spiritual pain. Bereavement follow-up is provided for at least a
year after the death of the patient. A bereavement counselor is available to coordinate all
bereavement efforts. Some of this counseling may be provided by volunteers. The staff
usually do initial bereavement visits right after the patients death, including attendance
at funerals, wakes, and so forth. This allows them to say goodbye to the family. For
difficult bereavement reactions, the bereavement counselor is available, and the program
must have access to mental health professionals who can respond in situations where

39

complicated or prolonged grief is present. Whatever the need, palliative care workers
must be prepared to face many of lifes most difficult questions.

Volunteers
In the United States, hospice and palliative care were founded by volunteers. All
those who labored to create the first hospice and palliative care programs did so on a
voluntary basis. Initially there were no reimbursements or funding sources. All who
labored to start palliative care did so because they believed that care of the dying had to
be improved and that palliative care was the way to do it. Many social movements started
by volunteers changed when funding became available. Services were provided by
professionals, and the volunteers were brushed aside. This has happened to some degree
in hospice care in that volunteers have stopped functioning in most professional roles.
The use of volunteers in palliative care adds a major dimension to the way care is
perceived by patients and families. Paid caregivers are greatly valued, but they are in the
role of employees. Volunteers are there to help because they choose to give service
selflessly.

Patients and families who accept the help of volunteers experience this as a higher
level of human activity. Volunteers are often people who have learned from their loss
experiences and choose to give back something to others. Volunteers help transform
palliative care into a community service rather than just a health care provider.
Volunteers are used in many roles in hospice care. The primary role is in serving patients
and families. Patient care volunteers usually provide support in the form of practical
assistance. They help by sitting with the patient while the family goes out and being a
substitute primary caregiver. They can do just about anything to help, including errands,
homemaker assistance, babysitting, massage, transport, and so forth. They always are a
source of emotional support to all. Some hospice care programs use volunteers in
professional roles, and some are still run entirely by volunteers. Volunteers usually spend
a block of time at least once a week at the patients home. They can spend a great deal of

40

time helping and often have the time to really get to know the family. Some programs use
volunteers to sit with the patient in the hospital or home as death approaches if the family
is not available. Inpatient volunteers assist the staff with many patient care tasks and may
provide hands-on care or emotional support. Many times people will share things with
their volunteer that they might not share with others because the volunteer is seen as
nonthreatening.

Lay volunteers are usually taught how to handle basic patient care needs such as
how to safely transfer or toilet the patient, how to give assistance when other staffs are
rendering care, and how to identify problems that need to be reported to the medical staff.
They receive training in communication and principles of palliative care. A volunteer
coordinator is usually on the staff to coordinate the efforts of volunteers. The coordinator
attends team meetings, receives volunteer requests, makes assignments, and supervises
and trains the volunteers. Volunteers are used in many other ways in hospice care.
Ongoing bereavement support for most families can be provided by volunteers who call,
visit with, and send written materials to bereaved families during the year after the death.
They also help provide office assistance in hospice care and help with fundraising and
other community projects. Volunteers continue to be an essential part of the palliative
care team and are one of the components of care that distinguishes palliative care from
other forms of care.

Therapists
Although not usually part of the palliative care core team, there are a number of
other disciplines that round out the group. The most prominent of the therapies are those
provided by physical, occupational, speech, respiratory, music, art (expressive), and
massage therapists. The first four specialists are usually available on contract to the
hospice program, and in hospital-based palliative care they are usually available as part of
the inpatient team. Because these services are often focused on rehabilitation and because
palliative care patients are declining, they may not be used frequently. However, the role

41

of rehabilitation in palliative care can be important and can help with restoration or
maintenance of important abilities to function even as the end of life approaches.

Physical Therapist
The physical therapist is the most commonly used therapist in palliative care.
Physical therapists help patients who have difficulty ambulating or transferring. They
help teach patients and families how best to move the patient and try to help maintain
muscle strength through range-of-motion exercises. Patients with basic needs can be
taught by the nurse. Patients with complex problems or fractures can benefit from
physical therapist help in using special equipment if they are likely to live for some time.

Occupational, Speech, Respiratory, and Enterostomal Therapists
Occupational therapy can help debilitated patients continue to function longer.
When used in palliative care, occupational therapists teach the patient and family to use
special devices so the patient can continue to eat and provide personal care longer. The
speech therapist is used in palliative care to assist patients who have trouble
communicating. A patient who has a brain tumor or lesion and who has lost speech or has
other aphasic symptoms can use a speech therapist to regain some ability to communicate
with family. The respiratory therapist administers breathing treatments to patients who
have difficulty breathing. In addition, an enterostomal therapist can be very helpful in
solving problems with stomas and is an expert in skin care management.

Expressive Therapists
The art, music, play, movement, and/or expressive therapists most often work with
children. They help them to express feelings that they may be unable to verbalize. This
may also help create an environment for the dying person that is conducive to growth.



42

Massage Therapists, Pet Therapists, and Aroma therapists
Massage therapy services have grown popular in many palliative care programs. In
some programs, there is a group of massage therapy volunteers who are available to work
on the patients or family members aches and pains. Massage therapy has been shown to
reduce pain in hospice patient populations. It offers an adjunct that many patients enjoy
and that adds to their quality of life. In some programs, there are volunteers who use pets
for therapy. Animals are brought around to visit the patients, as they can have a beneficial
effect. Aromatherapy is more common in the United Kingdom. The use of herbs and the
use of smell can have a very beneficial effect on quality of life.

HISTORY AND DEVELOPMENT OF PALLIATIVE CARE IN INDIA
The concept of palliative care is relatively new to India, having been introduced
only since the mid 1980s. Hospice and palliative care services in India have been
developed through the enormous effort of committed individuals who include Indian
health professionals and volunteers, in collaboration with international organisations and
individuals from other countries.

NARRATIVE HISTORY OF PALLIATIVE CARE
In the beginning: 1975 to 1990
In 1975, the Government of India initiated a National Cancer Control Programme
105. By 1984, this plan was modified to make pain relief one of the basic services to be
delivered at primary health care level. Unfortunately this policy was not translated into
extensive service provision. The hospice and palliative care movement in India started
tentatively in the early 1980s and slowly increased in the latter part of the decade. In
1986, Professor DSouza opened the first hospice, Shanti Avedna Ashram, in Mumbai,
Maharashtra, central India 106. At a similar time, pain clinics were established at the
Regional Cancer Centre, Trivandrum, Kerala with the assistance of a WHO subsidy 2,
and at Kidwai Memorial Institute of Oncology, Bangalore, Karnataka. Oral morphine was

43

made available, free of charge for the first time. Jeevodaya Hospice opened in the city of
Chennai, in the southern state of Tamil Nadu in 1990.

Further development: 1990- 2005
From the 1990s onwards there was a significant increase in the momentum of
development of hospice and palliative care provision. This was demonstrated through
both an expansion in the number of services as well as other key events and initiatives.
An important event in the development of palliative care was the proposal to establish the
Indian Association of Palliative Care (IAPC) in January 1993, during a workshop
arranged with the guidance of WHO and the Government of India. IAPC held its first
international conference at Varanasi in January 1994 (with WHO and Government of
India assistance) and adopted a constitution 72. The following year, the IAPC set up a
Palliative Care Drugs Committee and Educational Task Force 74 and held its Second
International Conference in Ahmedabad, where 180 delegates attended. The mid to late
1990s saw a range of developmental activities. The embryonic Pain and Palliative Care
Clinic was established at Medical College Hospital, Calicut, Kerala, south India. Over the
next few years this organisation went on to form the Pain and Palliative Care Society and
the Neighbourhood Network in Palliative Care, a community-based palliative care
service which became a WHO demonstration project. CanSupport was founded by
Harmala Gupta in Delhi which provided the first free palliative care home care support
service in north India. In Pune, Maharasthra, central India, the Cipla Cancer Palliative
Care Centre was established. In consultation with Cancer Relief India, it developed a new
concept of a living palliative care centre which has 50 beds arranged in a quadrangle
with a childrens playground in the middle.In 1998, the first collaborative workshops
organised by The Pain and Palliative Care Society and the WHO Collaborating Center for
Policy and Communications in Cancer Care were held in Kerala. This was one of a series
of workshops held across India which were a co-ordinated attempt to persuade state
officials of the benefits of adopting the simplified narcotics regulations and thus improve
accessibility of morphine.

44

Current status of palliative care in India
In India, we have identified over 138 organisations providing hospice and
palliative care services in 16 states or union territories. These services are usually
concentrated in large cities and regional cancer centres, with the exception of Kerala,
where services are more widespread. There are 19 states or union territories where we
found no evidence of palliative care provision. Hospice and palliative care services in
India are found in settings that include: regional cancer centres; free-standing hospices;
government and private hospitals; and outreach clinics, day and home care services run
from other designated buildings (e.g. health centres, schools). The majority of these
services can be characterized as: inpatient provision (in hospices or hospitals); outpatient
clinics (in hospitals and a variety of settings); and homecare services (run by hospitals,
hospices or volunteer networks).

CHALLENGES TO PALLIATIVE CARE DEVELOPMENT
Social and economic challenges
Poverty
Geographical distances (reaching rural communities)
Population density
Low indices of nutrition and health
Low levels of literacy in many states
Low status of women
Cultural perceptions of cancer, HIV/AIDS
Lack of funding for services
No state-sponsored social security system or effective medical insurance scheme
Lack of awareness of palliative care and cancer symptoms within the population




45

Medical challenges
Opioid availability
Opiophobia - Fear of the use, practice and administration of opioids from within the
medical profession
Late presentation of illness
Psychosocial needs neglected in busy, over-loaded clinics
Open communication between patient, family and health professional is limited.
Disclosure of diagnosis to patient
Lack of palliative care awareness within the health professions
Embedded culture in oncology of curing
Absence of palliative care in medical curricula
Multiple & competing health systems e.g. Biomedicine, Ayurveda, Homeopathy
Reimbursement for medical and health staff
Growing need for measures of quality assurance in palliative care hotspots
Lack of palliative care facilities for AIDS patients
Limited research because of lack of resources (time, finances, knowledge, motivation)

STEPS TO IMPROVE PALLIATIVE CARE SERVICE
It is time to start a national campaign to help a million people suffering people.
1. A national palliative care policy is the need of the hour and it requires a system for its
effective implementation.
2. Educating professionals and the public about the need for palliative care.
3. Palliative care must be included in the medical and nursing curriculum.
4. Improved drug availability.
5. Awareness building to promote palliative care.




46

CONCLUSION
Palliative care is more than just tender loving care. It seeks to improve the quality
of life of people with advanced life threatening or debilitating illness. Support is given by
treating symptoms like pain and attempting to minimize suffering. It involves physical
and psychosocial support to the patient and the affected family to cope with the illness
and even bereavement.















47

DAY ACTIVITIES OF THE TRAINEE
The trainee was placed in Shanthallaya Hospice for summer internship for a period of one
month between 10.5.2010 10.6.2010. The field work timing of the trainee was 9.30 am
to 2.30 pm. The trainee during the period of stay in the agency carried out many works
and learned many things. The various activities carried out by the trainee were:
1. Every day the trainee used to help the staff nurse in the agency in the
preparation of dressing material for the patients.
2. After the preparation of the dressing materials the trainee accompanies the staff
nurse to the ward for helping them in dressing the patients.
3. The trainee also organized various games for the patients and the relatives of
the patients.
4. The trainee used to read books and news paper and magazines to entertain the
patients and to use their time pass constructively.
5. The trainee carried out the work of the agency like cleaning and dispatching of
old files, dispatching of the expired medicines, going to medical shop and
getting the required medicines, helping the agency in organizing programmes,
preparation and filing of death certificates etc.
6. The trainee interacted with the relatives of the patients, the staff nurse to know
about the problems they face with the terminally ill people.
7. The trainee was given the work of feeding the details of all patients in the
system as a record.
8. The trainee helped the agency in taking and placing orders for stocks of
medicines, urine bags, adult diapers, face masks, gloves, injections etc.
9. The trainee entertained the patients by singing songs, telling stories etc, so that
it would be helpful for them to relax and forget their worries.
10. The trainee in order to fulfill the main component of summer internship
conducted three case studies.

48

CASE STUDY I
Mrs. X of age 80, Indian being the nationality is an illiterate framer, and is
admitted in Shanthallaya Hospice for the problem of Ca Oral cavity and the chief
complaints are
1. Pain
2. Anxiety, and
3. Depression
The client is the first born in the family and has five siblings. The early childhood of the
client is filled with poverty and being the first child the client was forced to take care of
the family at a very young age and it molded the personality of the client. The client is
married to a lazy farmer and the spouse is not the right person for the client. The client
has 7 children. The client is a perfectionists and the husband is very lazy. They always
fight and the client expects the same perfection and cleanliness from the children. When
I fail to do what my mother says she will hit me badly.
This same attitude is reflected in the work life also and the client needs the things
to be finished on time. The client never uses to delegate work as the client does not
believe others. The biggest problem of the client is that the client will never absent
herself from the work even if she is ill. My mother used to scold workers in the field and
always finds faults with them. Though it is for our betterment many a times we get
irritated.
When diagnosing the history of the problem it is found that one of the clients
brother died due to Ca Thyroid. There was not of much awareness and they did not give
due importance as they thought it to be some infection. In the case of the client, the client
had swelling in the cheek and the client thought that it was an insect bite. When the
swelling increased the client thought that it might be due to swelling of the gums. The
client consulted the doctor in GVN hospital only when there was excess pain and

49

bleeding and it was diagnosed as Ca Oral Cavity. The client received 30 radiation
therapies at the cost of Rs. 300 each. Having no recovery and reaching the final stage the
client is now in shanthallaya receiving palliative care.
CT scan shows Ca Oral cavity at IV stage. Sugar level at the time of diagnosis
was 140mg/dl and the albumin level was 2.5mg.
When we look into the pre morbid personality of the client, the client is an introvert
personality and the client describes herself in the terms of cleanliness and perfectionism,
and the hobbies of the client is cleaning the house. During the interview the client was
dressed neatly and maintained a very good eye contact. Sensorium of the client is good
except for the gustatory function. The client is not aware of any taste and it is not due to
poor gustatory functions but the client is very depressed and is not interested in anything.
The client has got good social relationship with others but here again the client
advices every one about being clean and perfect and sometimes the other people get
bored and irritated. The client is not able to move freely from one place to another due to
motor retardation and requires the help if other person to even stand. Cognition of the
client is poor as the client has poor orientation to time, place and people. The client
undergoes visual hallucinations as the client witnesses the presence of some insect in the
body. My mother always says that whenever she dint take bath insects climb in her body
and she even says that she has killed many insects.
On analyzing the attitude of the client, the client is very uncooperative and seems
to be withdrawn. The client is very highly perplexed about the onset of the disease as
according to client, diseases occur only when we are not clean. As the client is clean for
most of the time, the client is very confused. The client worries a lot as the last son is still
unmarried and the client fears that she may die without seeing his marriage.
The affective state of the client is poor and the client cries very often when
discussing about the onset of cancer and there is no nodulation in the voice. The client
has greater mood fluctuations. The client uses kinesthetic way of communication. I feel

50

people are not really clean and thats why they get a variety of diseases like cancer. I
could sense ugliness here.
The client has mild aphasia and there is unusual modulation or no modulation at
times. The pre morbid personality of the client shows problems of obsession and this is
intensified after the onset of cancer, and the client daily washes her hands for nearly 25 to
20 times. The client also experienced thought blocking and the client often experienced
incoherent speech often called as the word salad.
If we analyze the personality structure and the psychosexual stages of the client,
the client is dominated by the super ego, unrealistically striving towards perfection. The
client is fixated in the anal stage which resulted in obsession. Unknowingly the client
follows various defense mechanisms like denial, rationalization and repression.
Psychosocial stages of the client show that the client is in despair and it is expressed in
the form of depression. The client suffers from disdain.
Etiological diagnosis shows the impact of cancer in all areas of functioning of the
client. Physically the client suffers from
1. Pain
2. Fatigue
3. Foul smell
4. Difficulty in swallowing food.
The mental illnesses that follow the onset of cancer are
1. Obsession
2. Depression
3. Anxiety
4. Fear of death.
Socially the client feels that no one respects her. The client feels that other isolate the
client due to foul smell arising from the client. The client has lost all hope in God and

51

thinks that God has unduly punished her. The cancer gene runs into the family and this
could be one of the reasons for cancer. During the interview, deep resentment was found
in the client which could have contributed to the onset of cancer. After working hours the
client used to eat tiffin in local shops and the oil and food stuffs they use could also have
caused the disease, for the stuffs prepared by the local shops may contain harmful
substances.
When asked how life has changed after cancer the client said, I had everything I
deserved in my life. My life was beautiful without any corrections. Suddenly everything
changed. I am punishedUnfairly punished for no reasons. No one respects me. I am not
happy. Why me?













52

CASE STUDY II
Mr. X of age 73, Indian being the nationality, has studied till III std and works in a
shop, is admitted in Shanthallaya Hospice for the problem of Ca Thyroid and the chief
complaints are
1. Lack of bowel movements.
2. Insomnia
3. Fatigue.
The client is the second born in the family and has five siblings. There are no traces of
poverty in the family and the client is the only son in the family, and the most pet and
pampered child. There was no responsibility on the part of the client and the client was
happy go child which resulted in tantrums and the client gets what he wishes through
displaying aggression. The client carried the same attitude in the married life also where
the client turned out to be a male chauvinist. The client has 5 children and the client gives
irrational affection to the male child and does not bother about others. He dint even
come for our daughters marriage. Even when I forced him to come he just hit me and
refused to come.
The client had problem in the work life also, where the client took care of the
fathers business. The client used to ill treat the female customers who used to come to
the shop and the client often complaints of body ache and used this as an excuse to quit
going to shop. He often acts as if he is not feeling well and complaints that he is tired
and sleeps for most of the time in the house instead of going to shop.
There were no traces of incidence of cancer in the family and among the siblings
of the client and so cancer is new in the family and the family members are not aware of
such a disease. Due to the behavior of the client everyone in the family left the client and
only the younger son was taking care of the client. The client out of fear of insecure
feelings started ill treating the son too and so the client was left in an old age home. At

53

this stage the client started developing swelling in the throat and the care givers of the old
age home took the client to Government hospital and it was diagnosed as Ca Thyroid.
Reaching the final stage and no one to take care of the client the client was admitted in
Shanthallaya hospice.
CT scan of neck shows a well defined irregular shaped swelling of size 10X70 cm
over the left side of the neck. CT scan shows mass lesion and diagnosed as Ca Thyroid.
When we look into the pre morbid personality of the client the client is an extrovert
personality and the client is very aggressive and the client describes himself in terms of
masculinity and the client had behavioral problems during the child hood period. During
the interview the client was poorly dressed and most of the time the client did not
maintain proper eye contact. Sensorium of the client is good except for the visual
function. The client has not undergone any operations due to fear of surgery, and the
client is not able to see things which are at a greater distance. The client also had auditory
impairment.
The client has got good social relationship with others but only moves with males.
Whenever the client talks to his counter parts the client usually grumbles about women.
The client exhibits automatism, often rubbing his cheeks and hands. The client has no
control over the bowel movements and urinates in the bed. Cognition of the client is
better and the client had good orientation and the client remote memory is also good. The
client suffers from delusion and always thinks that the clients wife is always planning to
plot against him. My wife has no other better job than talking about me. She always
plans to kill me and if I die, my wife will be the reason for my death.
On analyzing the attitude of the client, the client is very cooperative and seems to
be withdrawn from other female inmates. The client is very evasive, avoiding direct
answers to questions and the client seems to be very impulsive, and most of the time the
client was very arrogant. Though the client is impulsive, he is never worried about his
acts.

54

The affective state of the client is good there is good modulation in the voice and
sometimes talks in a very loud voice to make others believe him. The client has greater
mood fluctuations. The client uses visual sensory way of communication. I have seen
many boys getting cancer because their wife are not goodI see my wife as a barrier to
my life.
The client talks at an unusual rate of speed and volume and there are no symptoms
of aphasia and mutism. The client also experienced hypochondrias often complaining
about pain in various parts of the body. I have pain in hands and legs. But if I say this to
my wife and doctor no one believes me.
If we analyze the personality structure and the psychosexual stage of the client, the
client is dominated by the Id. The client tends to satisfy his wishes immediately without
thinking the possibility of its happening. The client is fixated in the oral stage which led
to the development of aggression. Unknowingly the client follows various defense
mechanisms like displacement, rationalization, and projection. Psychosocial stages of the
client show that the client has no traces of generalized sensuality. The client is not able to
accept the pleasure of non sexual relationship and does not good relationship with grand
children.
Etiological diagnosis shows the impact of cancer in all areas of functioning of the
client. Physically the client suffers from
1. Swelling in the throat.
2. Difficulty in swallowing food.
3. Fatigue.
4. Sleeplessness.
5. Lack of urinary control.
6. Foul smell.


55

The mental illnesses that follow the onset of cancer are
1. Delusion
2. Aggression
3. Hypochondriacs
Socially the client is suffering from financial dependency and the client also
suffers from degradation. Due to foul smell arising from the client every one hesitates to
come near the client. The client also feels that the respect he received before has been
declined. Before the onset of the disease I used to be the king in the housebut no one
respects me now and no one care for me as before. The client has lost all hope in life and
does not feel any purpose or mission in life. The client does not believe in God and
always curses the God. The main factor that contributed to the disease is that the client
did not take proper nutrition, and the excessive aggression and rage has created deep
resentment in the client which could have contributed to the disease.
When asked how life has changed after cancer the client said, I was the king in
the house. I was very happy enjoying my life. But after this disease I have lost
everything. My wealth, my happiness everything is lost. My wife is the cause for this.
God has given me this disease to punish my wife.








56

CASE STUDY III
Mrs. X of age 58, Indian being the nationality, has studied till VIII std and works
as a maid, is admitted in Shanthallaya Hospice for the problem of Ca Breast and the chief
complaints are
1. Swelling in left hand.
2. Nausea.
3. Vomiting
The client is the only child in the family. The early childhood of the client is filled with
poverty and as the clients mother was sick the client was forced to discontinue her
education to take care of the mother, as there was no other person in the family. All the
responsibility lies with the client. The client is married to an auto driver and has three
children. The clients husband drinks regularly as he has to drive long distances. This
caused confusion in the family the clients husband often complaints that the client
suspects him a lot. She only made me drinkshe suspects me a lot, everyday and every
minute.
The client work life is filled with ups and downs as the client faced humiliation in
the work place because of her husband being a drunkard. The work life of the client was
normal. When diagnosing the history of the problem it is found that the clients mother
suffered from Ca Breast. But the client and the father were not much aware about the
disease and they thought it to be a result of someones curse. In the case of the client, the
client had swelling in the breast but did not take it seriously. Without knowing the
seriousness of the disease the client applied all kind of detergent soaps and it led to
further infections and bleeding from the breast. Later the client was taken to GVN
hospital where it was diagnosed as Ca Breast. Having no one to take care of the family
the client is now in Shanthallaya receiving palliative care.

57

Pathology report states that few small chunks of tissues and two of them show an
infiltrating tumor possessing eosinophilic cell with pleomorpic hyper chromatic nuclei on
occasional tubles. Others show necrotic area. CT scan shows there is a large ulcero
proliferating lesion arising from the left breast with the involvement of the skin and
subcutaneous tissues.
When we look into the pre morbid personality of the client, the client is an
introvert personality and the client describes herself in the terms of independency and
from childhood the client has the habit of doubting others, and the hobbies of the client is
taking care of others. During the interview the client was poorly dressed and did not
maintain proper eye contact and gave vague facial expressions. There is no one to take
care of meand I find it difficult to take care of myself on my own. Sensorium of the
client is good. The client has got good social relationship with others. Whenever the
client sees the other inmates to be depressed or sad, then the client immediately goes to
them and sings songs for their recovery. But the client fights with other inmates only
when they talk about the clients husband. The client is not able to move freely from one
place to another due to swelling in the left hand and requires someones help. Cognition
of the client is good and the client has good orientation to time place and people. There
are no perceptual problems with the client.
On analyzing the attitude of the client, the client is very cooperative and seems to
be very sarcastic especially when talking about the husband. The client is extremely
apprehensive and worried about attaining a dignified death. The client avoids direct
answers to questions.
The affective state of the client is good and the client talks in a very low voice
when describing the onset of cancer. The client has mild mood fluctuations. The client
uses auditory sensory way of communication. I have heard that my relatives talk bad of
meI have heard about a lot of people dying of cancer.

58

The client talks at an unusual rate of speed and volume and there are no symptoms
of aphasia and mutism. The modulation and the intonation of the client are good and the
client gives correct and appropriate pause between the sentences. The pre morbid
personality of the client shows problems of suspision and this is intensified after the onset
of cancer, and the client doubts her husband. The client also experienced
circumstantiability, explaining the events in greater details. The client is able to
remember even the date and time of the event.
If we analyze the personality structure and the psychosexual stages of the client,
the client is dominated by the super ego. Both the ego ideal and the conscience are
greatly developed. The client is fixated in the oral stage which resulted in the sarcastic
attitude. Unknowingly the client follows various defense mechanisms like reaction
formation, regression and compensation. Psychosocial stages of the client show that the
client is in adulthood stage and is characterized by the syntonic quality of stagnation. The
client feels that, the client has nothing to give to her grand children except for the cancer.
Etiological diagnosis shows the impact of cancer in all areas of functioning of the
client. Physically the client suffers from
1. Fatigue
2. Nausea
3. Vomiting
4. Constipation
5. Pain
6. Swelling in left hand.
The mental illnesses that follow the onset of cancer are
1. Suspicion
2. Depression
3. Isolation


59

Socially the client suffers from the problem of stigma and many people talk ill of
the client. The client also suffers from change of role status and even the clients own
children refuse to come and see the client as they fear that cancer is a contagious disease.
The client has not lost hope in God and still feels that God will save the client. The
cancer gene runs into the family and this could be one of the reasons for cancer. During
the interview, the client was found to be over mothering and wants to have everyone in
her control and this could also have led to the development of the disease.
When asked how life has changed after cancer the client said, I had a very lovely
family expect my husband. I had beautiful children and I was blessed by the God. But
now I am all alone.no one to talk to me or to take care of me. I was very independent
before but now I am dependent on othersthis hurts me more.













60

SELF LEARNING
The trainee during the summer internship learnt many things and gained knowledge in
various areas.
1. The trainee learnt about the organizational structure of the agency and their
limiting problem.
2. The trainee was introduced to the concept of Hospice and palliative care.
3. The trainee was able to understand the onset and the reasons for caner and its
effect on human life.
4. The various medicines that are used for treating cancer were taught to the
trainee and the trainee was also clearly explained about the side effects of each
medicine.
5. The trainee learnt to check pulse rate and blood pressure rate.
6. The trainee also learnt to apply urine tubes.
7. Of all, the trainee learnt to dress the patients and the immediate first aid to be
followed in any case of emergencies.
8. The trainee learnt how to conduct a case study.
9. The trainee learnt the art of patience and the trainee was able to understand
how tolerant a social worker should be to work with the terminally ill people.
10. The trainee could understand and feel the pain of the patients and the family
members and at the same time the client was also able to understand the
societys role in the fighting against such diseases and accepting the terminally
ill people.





61

EXPERIENCE OF THE TRAINEE
The trainee initially felt very hard to digest the plight of the people and to accept
them. The strong odor that came from the ward, the scene of the patients with so many
bandages around the various parts of the body was initially difficult for the trainee to be
in the ward. But later the trainee realized, the pain the suffering of the patient and the
trainee understood how difficult it should be to live with such a terminally destructive
disease. From then the trainee got used to the environment and the trainee even stopped
wearing face masks, as the trainee thought that wearing such mask may be degrading the
patients.
Really, the plight of the people moved the trainee very much and the stay in the
agency along with the patient was really challenging to the client as the client was able to
test the level of tolerance. The trainee practically applied the various qualities of good
social worker like acceptance, empathy etc and was able to move freely with the patients.
Death which was once a very mysterious phenomenon for the trainee is now become a
very normal activity of life such as birth and other developmental process. The trainee
was able to accept death as any other thing and it has really molded the thinking pattern
and the personality of the client. Trainee was able to experience death and clearly
visualized the emotions of the patients and the family members who are in the death bed.
Trainee realized what is life all about and it was really an eye opener for the
trainee, to contribute something worth to the society to alleviate the physical and the
psychological pain of the people. This stay in the agency has very strongly motivated the
client to spread awareness among each and every people the trainee meets, about the
impact and the serenity of the disease both physical and mentally. By being placed in a
palliative and hospice setting the trainee was able to understand the concept of such
services and it was also useful for the trainee to create awareness among the people about
the existence of such services and the proper use of these resources.


62

BIBILIOGRAPHY
BOOKS
1. Jacqueline L., The Gale Encyclopedia of cancer: A Guide to Cancer and its
treatment, Second Edition. Library of Congress Cataloging.
2. National Cancer Control Programmes; Policies and Managerial Guidelines;
2nd Edition; World Health Organization, Geneva, 2002.
3. Stephen R. connor (2009) Hospice and palliative care: The essential guide,
Library of Congress Cataloging-in-Publication Data.
4. Harvey M. Chochinov et al., (2000) Handbook of psychiatry in palliative
medicine, Oxford University press.
5. Albert J et al., Encyclopedia of Case study Research, Sage Publications.
WEBSITES
1. www.palliativecare.in
2. www.hospicecare.com
3. www.cancer.gov
4. www.cancer.org

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