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Report on field visit to shanti avedna sadan, New Delhi
1. REPORT ON FIELD VISIT TO SHANTI AVEDNA SADAN
NEW DELHI
Introduction
Hospice care is end-of-life care. A team of health care professionals and volunteers provides it.
They give medical, psychological, and spiritual support. The goal of the care is to help people
who are dying have peace, comfort, and dignity. The caregivers try to control pain and other
symptoms so a person can remain as alert and comfortable as possible. Hospice programs also
provide services to support a patient's family.
Usually, a hospice patient is expected to live 6 months or less. Hospice care can take place
At home
At a hospice center
In a hospital
In a skilled nursing facility
What is hospice care?
Hospice focuses on caring, not curing and in most cases care is provided in the patient's home.
Hospice care also is provided in freestanding hospice centers, hospitals, and nursing homes and
other long-term care facilities. Hospice services are available to patients of any age, religion,
race, or illness. Hospice care is covered under Medicare, Medicaid, most private insurance plans,
HMOs, and other managed care organizations.
How does hospice care work?
Typically, a family member serves as the primary caregiver and, when appropriate, helps make
decisions for the terminally ill individual. Members of the hospice staff make regular visits to
assess the patient and provide additional care or other services. Hospice staff is on-call 24 hours
a day, seven days a week.
The hospice team develops a care plan that meets each patient's individual needs for pain
management and symptom control.
The team usually consists of:
The patient’s personal physician;
Hospice physician (or medical director);
Nurses;
Home health aides;
Social workers;
Clergy or other counselors
2. Trained volunteers; and
Speech, physical, and occupational therapists, if needed.
What services are provided?
Among its major responsibilities, the interdisciplinary hospice team:
Manages the patient’s pain and symptoms;
Assists the patient with the emotional and psychosocial and spiritual aspects of dying;
Provides needed drugs, medical supplies, and equipment;
Coaches the family on how to care for the patient;
Delivers special services like speech and physical therapy when needed;
Makes short-term inpatient care available when pain or symptoms become too difficult to
manage at home, or the caregiver needs respite time; and
Provides bereavement care and counseling to surviving family and friends.
Shanti Avedna Sadan
Shanti Avedna Sadan (SAS)
The Shanti Avedna Sadan is India’s first Hospice, an institution that takes care of the advanced
terminally ill Cancer 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. The Shanti Avedna Sadan is
3. entirely a non-governmental voluntary organization, run by a Charitable Trust. The Shanti
Avedna Sadan Trust is a Charitable Trust , registered under the Societies Registration Act of
1860 No.BOM 173/78 G.B.B.S.D and the Bombay Public Trusts Act 1950, No.F-4862 (Bom) of
1978
Meaning of SAS Logo
The Logo shows a strong hand holding a weak hand to signify support, comfort and consolation
in the hour of need, within the flame of love under the roof of the Sadan. Shanti means peace,
Avedna signifies absence of Pain and Sadan is a home. Shanti Avedna Sadan therefore literally
means “Peace in the absence of pain home”. The Logo also has the words St.Augustine:
“Where there is love, there is no pain”, which continues as, “If there is pain, it is a pain that
is loved!”
Aims of the Institution
The aims of the Institution are:
To care for the advanced and terminally ill Cancer patients and those cancer patients
suffering from AIDs also.
To offer this care to all who need it, irrespective of community caste or creed.
To give preference to the poor and needy
To five this care totally free of cost.
To conduct research for palliation in advanced Cancer.
Branches
The main Branch is in Mumbai, situated in Bandra, with Branches in Delhi, near Safdarjung
Hospital, and another Branch in Goa, in the village of Loutulim
Bed Strength
4. The main Branch in Mumbai, with the new extension can accommodate up to 100 inpatients, in
five patient wards of 10 beds each and fifty patients in double-bedded rooms.
The Branch in Delhi has a capacity of 40 beds, with one floor for the males and one for the
females.
The Branch in Goa is in a village setting, with small wards and rooms to accommodate up to 20
patients.
Private Room Facility
The Shanti Avedna Sadan is a service organization where absolutely no charges are levied.
Hence, there are no private rooms in any of the Branches. The patients are always encouraged
to be in the wards, as they can be looked after better and never remain lonely. The single rooms
are not given on request, but are allotted by the nursing staff according to the needs of the
patients. Each bed in the ward in all the Branches, however, can be curtained off for individual
privacy and comfort when needed. Further, in Mumbai, each bed has a beautiful serene view of
the Arabian Sea. Also, all the wards and rooms are well lit and ventilated.
Cancer treatment in SAS
No specific treatment for the Cancer is given, as all this has already been exhausted before the
patient is admitted. Besides, there are no infrastructure facilities for Cancer treatment, and hence
it would be unfair to any patient who can still benefit from Cancer treatment, even for palliation,
to be admitted in the Sadan.
Goal of the treatment
The first goal is to make the patient free of pain and distressing symptoms. Once this is achieved,
we then help them to come to terms with their disease and impending death, so that they accept
the same and are then at peace with themselves, their families and their God.
Extraordinary life maintaining measures used in SAS
Our goal is to “Add life to days, and not days to life”. A terminally ill patient, who has no hope
for recovery, will not benefit from any extraordinary life maintaining measures, like a respirator,
intravenous drips or alimentation, blood transfusions, etc. These measures make the patient more
uncomfortable and miserable and uselessly prolong suffering. They are hence strictly avoided.
Intensive Care facility in SAS
5. No ICU care in SAS. It follows that if extra-ordinary life maintaining measures are not
contemplated, then the ICU is the very last place a terminally ill patient should be placed in.
Instead, they should be in their own bed, surrounded by the family and friends, and the
discomfort of unnecessary supportive measures.SAS gives symptomatic care only to their
patients
Symptomatic care
The relief of distressing symptoms is the primary goal of palliative care. Once the patient is free
from symptoms, especially severe pain and other distressing symptoms of Cancer like breathing
difficulty, nausea and vomiting, cough, sleeplessness etc., he/she becomes a different person and
can then attend to their other needs. Symptomatic care is therefore individualized to the needs of
each patient with all the necessary medication needed, to make him or her as comfortable as
possible.
Pain management in SAS
Pain is first evaluated to detect its cause, site and intensity. It is then graded as mild, moderate or
severe, and accordingly treated. Mild pain is treated with mild analgesics like NSAIDS and
others, moderate pain is treated with mild opiates like Codeine and severe pain is managed with
strong opiates like Morphine. The pain medication is preferably given orally wherever possible,
by the clock – every four hours for a cumulative effect, and constantly monitored as per needs of
the patient so that he/she remains totally pain free.
Pain management is based on W.H.O. Analgesic Ladder in SAS
W.H.O. Analgesic Ladder for Cancer Pain
Opioid Analgesics
Opiates are obtained from the poppy plant and are the best drugs to control severe pain. The
main drug used is Morphine, which is best used in the oral form, whenever possible. The dose is
6. gradually increased till the patient becomes pain free. It is also continued with other supportive
drug groups, which help to reduce the dosage and increase the response.
Adverse effects of Morphine
What Morphine is initially given, there may be some nausea, drowsiness, and disorientation.
These are transient side effects which are controlled with medication and pass away once the
patient gets used to the Morphine. The main side effect of all opiates is constipation. This has to
be anticipated by giving the necessary laxatives and mechanical bowel cleaning, when opiates
are started so that it does not become a difficult problem.
Myths regarding opiates
There are several myths regarding opiates:
1. It is addictive. Opiates are not addictive when used for pain relief.
2. It makes one a zombie. We have patients on large doses, who are alert and active as ever,
doing everything.
3. Large doses are given. The dose is given per the need. Large doses, even up to several
thousand milligrams can be tolerated because the patient develops an increasing tolerance to the
drug which a normal individual does not have.
Complimentary Therapies in SAS
Alternate systems of medicine like Ayrvedic, Homepathic, Unani, Herbal etc, are often
practiced in our country. We do not permit these systems to be used by outside doctors in the
Sadan, simply because we do not know how they would react with our own medications. We
therefore advise the patient who would like to try these methods, to do it at home or elsewhere,
and come to us when they have finished with them.
Admission Process
Criteria for SAS admission
Any patient who has advanced Cancer is entitled to this care. It is important however, that all
possible useful treatment for the Cancer has already been given, and the patient will not benefit
from any such further treatment, even for palliation. Our doctors very carefully screen the patient
to confirm this, before admission. Preference for admission is given to those cases with severe
distressing symptoms and the poor and destitute. All admissions are made irrespective of any
caste or creed.
There are no charges whatsoever to be paid either for admission or for any are of service
given at the Shanti Avedna Sadan. There is also no need for any recommendations as all
suitable cases are accepted.
Sources of patients
7. Most patients are sent from the Cancer hospitals or the general hospitals, not only in Delhi, but
from all over India. Some also come from private hospitals, or are sent by general practitioners.
Many are also brought by religious and social workers.
Undertakings to be given on admission
The person who admits the patient must give clear information of the address and telephone
contacts of the patient. These are important for the staff to contact the family in case the patient
is serious or expires. An undertaking is also taken that the family understands the care given at
the Sadan and accepts the same. In case of destitute cases, an undertaking is taken from the
patient whenever possible, to do the last funeral rites also. This avoids the problem of handing
them over to the police authorities as unclaimed bodies. Whenever necessary the Sadan performs
the last rites for the patient as per his/her religion at our own cost.
Referral Process
We request that a special referral form be filled in by the referring hospital doctor. This is
important for us, as it states the diagnosis of the patient and all the treatment given to the patient.
This information is necessary for us to plan further treatment and care. The referral forms are
available at most referring institutions or can easily be obtained from the Sadan, at no cost.
The patient is usually brought by the family members. Sometimes they are brought by care
givers and well wishers, and even by the religious or social workers.
The patient can come directly also. However, they must bring all records of treatment given.
These are evaluated by our doctors, who then fill the necessary referral form, if the patient is
suitable for admission in the Sadan. We prefer, however, that referral forms are filled by the
referring hospitals or doctors.
Timings for admissions
Admissions are normally done during the daytime working hours from 9:00 am to 6:00 pm. No
night admissions are made, except in special circumstances, when prior intimation has been
given that the patient is coming from out of town. There are strictly no emergency admissions.
Best time for admission
Once a decision has been taken that no further active Cancer treatment is possible, the patient
should be brought sooner than later, especially if there are severe distressing symptoms. This
gives us a chance to relieve their symptoms in time and make them more comfortable. It is of
little use to bring gasping patients in their last moments, as there is very little that we can do to
8. help them at that stage. It is much better to keep them at home, if the end is almost imminent. It
is more beneficial to bring the patients earlier then later.
The patient is received very warmly by the staff and made immediately comfortable. They are
washed and cleaned and given a comfortable bed. They are given initial medication as necessary,
so that they are comfortable. The formalities are filled in by the relatives, and the honorary
doctor examines the patient and prescribes further necessary medication.
We encourage relatives to visit the patient as often as possible. Also when extra care is needed, or
patient is serious, we do permit a relative to stay with the patient.
Can a patient go home after admission?
Most certainly the patient can go home whenever he/she want to and the family is willing to look
after them. In fact, once the patient is pain and symptom free, we encourage our patients to go
home, and almost 20% of our inmates do so.
Can a discharged patient come back?
Yes, the patient can always come back to the Sadan, if the symptoms or discomfort increases, or
the family finds it difficult to look after them at home.
Can a discharged patient get the medicines to take home?
We do not like the patient’s medicines to be discontinued especially the opiates. Hence, a week’s
supply of medication is given to the patient to take home. Thereafter, the patient or relative must
collect the supplies weekly, after reporting on the condition of the patient, and any dose
adjustment if needed.
Services
The care given is to make the patient as symptom free and comfortable as is possible. The needs
of a terminally ill patient are many: medical, nursing, mental, social, spiritual and financial.
The care given therefore is with a team effort, each member of the team looking after the needs
of the patient in his or her specialty. The team consists of doctors, nurse’s counselors,
volunteers and spiritual advisors, to offer “total: care to the patient.
Nursing Care
The nursing care, which is the most important, is given by trained and qualified members of the
nursing order of the Holy Cross Sisters, with much love and devotion. They form the “Heart” of
the Sadan. They are helped by paramedical nursing aides, in all three Branches.
9. Medical Care
The day-to-day Medical Care is given by specially trained doctors in palliative care, in all our
Branches.
In addition, specialist care is given by our onco-surgeon whenever needed.
Other specialty doctors like dentists, skin specialists, anesthetists etc. are invited on voluntary
basis to help patients whenever a specific need arises.
Supportive Care
Supportive Care is given by a whole team, consisting of volunteers, social workers, occupational
therapists, counselors, and religious advisors. Most of all, the family members are trained and
encouraged to support the patient as best as possible.
Nutritional Service
Both vegetarian and non-vegetarian food is given to the patients. Sometimes, when possible,
their special food requests are also attended to. For tube feeding, special food formulas are used.
We do not permit outside food to be brought, because it often upsets the patient and interferes
with the mediation. In special circumstances, if outside food is permitted, it must be with the
knowledge of the nursing staff and handed over to the staff to be given to the patient.
Laundry Services
The patients are permitted to bring and wear their own clothing. When this is not possible, the
Sadan provides a clean and fresh supply of comfortable clothing as needed.
Other Services
The patients are given various relaxation and recreational facilities, such as games, T.V.,
visits to the garden, outings etc.
We also have an occupational therapist, who teaches and supports occupational therapy to
keep the patients occupied.
The patients are often visited by groups that entertain them. All major festivals like
Diwali, Christmas, etc are celebrated to bring joy into their lives.
We, however, strictly do not permit spiritual indoctrination of any kind by visiting
groups.
After life care services
When the patient passes away, the relatives are informed, if they are not already there.
The deceased is washed and dressed and laid in the prayer room for any last rites to be
done according to each religion.
10. The deceased is then given over to the family, with a death certificate for burial or
cremation as desired.
The funeral rites are as per each person’s religion. When there is no family, the Sadan
undertakes to perform the last rites as needed.
Mortuary Service
The Sadan has a small mortuary for the use of its inmates only. This rule is strictly followed for
the medico-legal reasons. The deceased is kept in the mortuary, in case the family members need
some time to come, or if there is some delay in the funeral rites.
Supportive services
In addition to the main care of our inmates, we also have the following support systems:
A) Out Patient Dept (OPD)
This is mainly for patients who have been discharged from the Sadan and need follow-up
treatment on their medication. Our house doctor is available for the same every afternoon as
required.
B) Day Care Services
This is for patients who would like to stay at home, but like to come in for day care attention
when needed. All necessary care is given on a day care basis.
C) Home Services
We do not have a home care service, but closely liase with other NGOs like ‘Caring Hearts’,
Cancer Patients Aides Association, V-Care etc., who support these services and coordinate with
the Sadan.
Organization pattern
The Sadan is managed by a Governing Body consisting of five Trustees and othe Board members
as follows:
Cardinal Ivan Dias: Patron Trustee
Dr.L.J.de Souza: Managing Trustee
Sr.Ancy Kottuppalli : Administrator/Trustee
Mrs. Carmen de Souza : Trustee
Dr.Satyavati Sirsat: Trustee
Members:
11. 1. Dr.Sateesh R. Gupte
2. Mr. Anil K. Nehru
3. Mr.Walter Saldanha
4. Mr.Jamshed Kanga
5. Mr.Homi Ayrton
6. Mr.Rapheal Donald
7. Air Marshal Denzil Keelor
8. Mr.Julio Ribeiro
FUNDS & DONATIONS
All the funds come through voluntary donations from individuals and organizations only. No
grants or maintenance costs are received from any government agency.
All funds received are duly receipted and audited. Annual audited accounts are submitted to the
income Tax authorities and the Charity Commissioner.
All donations received are credit to the Corpus Fund, which is invested in secure Securities,
mainly in the Reserve Bank Of India, and scheduled recognized banks. The interest obtained
from the Corpus Fund is used for the running and maintenance of all three Branches.
No investments are made in shares or mutual funds, as these are not permitted by the Charity
Commissioner.
Donation Process
Anyone can make a donation in cash or kind. Donations are accepted in cash or cheques in the
name of Shanti Avedna Sadan. All donations should be handed only to the
Administrator/Secretary and an official receipt obtained for the same. Cheques should be sent by
registered mail and will be duly acknowledged after realization of the same. When no receipts
are required, the cash donation can be dropped in the donation box of the Sadan. For donations in
kind, the donors are requested to inquire with the Administrator, what materials are required and
would be useful in the Sadan, before bringing the same. All donors are requested to sign a form
stating details of the donation and earmarking the donation for the Corpus Fund. This is
necessary for tax purposes.
All foreign donations, either in Indian currency or foreign currency are deposited only in our
Foreign Currency Account under the FCRA with the Indian Bank, Cumballa Hill, and Mumbai.
An audited statement of all foreign donations is sent annually to Delhi as required by F.C.R.A
regulations.
Endowments Facilities
Endowments are welcomed under the following categories, as available:
12. Endowment for one floor: Rs.50 Lakhs
Endowment for one ward: Rs.10 Lakhs
Endowment for one single room: Rs.4 Lakhs
Co-sponsor for one single room: Rs.2 Lakhs
Endowment for one bed: Rs.2 Lakhs
Co-sponsor for one bed: Rs.1 Lakh
Equipping one ward: Rs.2.5 Lakhs
Cost of one bed: Rs.25,000/-
Cost of one table: Rs.15,000/-
Cost of one locker: Rs.10,000/-
Other equipment: As per cost.
Staffing pattern
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13. RAJ KUMARI AMRIT KAUR COLLEGE OF NURSING
LAJPAT NAGAR-NEWDELHI
2018-19 batch Msc Nursing first year students of Raj Kumari Amrit Kaur College of Nursing
have visited Shanti Avedna Sadan New Delhi on 24/08/2018 as part of advance nursing practice.
We have started the trip from RAK College of nursing campus at 8.30 am in our college bus. We
have 24 students in our batch. We have reached Shanti Avedna Sadan at 9 am.
Mrs. Sarita Shokandha, Sr.Tutor has joined group and guided us. She was taken us to Shanti
Avedna Sadan auditorium, where we have warmly received by Shanti Avedna Sadan medical
officer. She has explained various services of Shanti Avedna Sadan in detail. We have seen a
small documentary on activities of Shanti Avedna Sadan. After the session she has taken us to the
physical orientation of the Shanti Avedna Sadan. We have visited various areas, including male
and female wards, prayer hall. Doctor’s room, Nurse’s room, Utility room, Medicine room
etc.She has explained the various departmental activities. The respected Administrator of Shanti
Avedna Sadan was out of station. We have given a small contribution as a charity fund to Shanti
Avedna Sadan
We have completed the visit by 11.30 am and went for medical surgical theory class at
Safdarjung Hospital
Objectives
After completion of the visit the students are able to
Explain about vision and mission of Shanti Avedna Sadan.
Discuss the history and philosophy of Shanti Avedna Sadan.
Describe the location and physical setup of the Shanti Avedna Sadan.
List the Aims and objectives of Shanti Avedna Sadan.
Determine the policy of registration of new patients in Shanti Avedna Sadan.
Describe the administrative and staffing pattern of the organization.
Enlist the services of Shanti Avedna Sadan.
Discuss the funds and financial resources of Shanti Avedna Sadan.
Explain about care of terminally ill patients, symptomatic care and palliative care.
Conclusion
14. The visit to Shanti Avedna Sadan was a very good educational experience to everyone.
Shanti Avedna Sadan is a historically important institution too as it is the first hospice in
India. For me it was new information. Like that I have learned many things through this
educational visit. I express my sincere gratitude to Shanti Avedna Sadan and Madam
Sarita Shokandha for organizing such a wonderful informational visit to us.