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                By Dr. Suraj Verma MBBS. MS. FICS. (USA)
                   President Cancer Detection Society of India

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HOSPICE SERVICES

 

INTRODUCTION
Hospice is a new concept to take total active care of advanced untreatable and terminal cancer cases. It is a serene, queit and comfortable place like an ashram where the patient is admitted when he is dying beyond salvation and where the survival is defined in days and weeks.
The various services provided here aim to give comfort, quality and dignity to life.
To know more details kindly go through project proposal submitted.
The project proposal is being submitted for community partnership and financial help

We are planning such a project at -

(A) Cancer Services Center with Hospice at Dharamshala (Himachal Pradesh)

(B) Home Care Cancer Services and Palliative Care of advanced elderly at Delhi

 

(Project Proposal)

Appeal - We invite the various concerns for Community partnership and Financial Assistance.

Administrative Information

Title of the Project

HOME CARE CANCER SERVICES AND PALLIATIVE CARE

Purpose To serve the terminal cancer patients and advanced elderly .
Name of Organisation Cancer Detection Society of India
Address of Organisation H8, Hauz Khas, New Delhi - 110016
Fax No. 91-11-685-0397
Tel No. 91-11-651-1628/656-0867
E-mail drsuraaj@yahoo.com
Legal Poroject Holder Dr. Suraj Verma MBBS, MS FICS (USA)
Designation President - Cancer Detection Society of India
Address

H8, Hauz Khas, New Delhi - 110 016

Project period It shall be an ongoing constinuous project
 
SUMMARY - Cancer has become an increasingly common disease. Its a disease of the olderly and affects either sex almost equally. Due to socio-economical conditions and lack of education, rural and urban rural are unable to reach to a right place for diagnosis at an early stage. 80-90% come to know the disease when it is very advanced, and treatment is difficult.
Therefore, a multi pronged approach is planned to control and contain the disease. The project is already going on which not only educates the people and creates awareness but also controls cancer occurance by ---

1. Early detection by organizing Cancer Detection Camps.

2. Early diagnosis of detected cases.

3. Early management, guidance and counselling.

4. Early rehabilitation.

5. Early transfer of detected cases to Regional Cancer Centres(R.C.C.)

6. Early transfer of terminal cases to Palliative Care Units.

7. Providing Home Care Palliative Services.

Activities : We plan to achieve our objectives by three ways.

I.

Primary Prevention :

By educating people about factors causing cancer, e.g., Smoking, Chewing Tobacco, Paan Masalas, alcohol drinking, pollution, colouring agents and preservatives.

We shall supply educating literature, hold exhibition, motivate people to attend our Cancer Detection Camps and help our survey team.

II. Secondary Prevention :
  This is an acitve and alert activity which works as indicator and helps monitoring the survey and work done by health workers. If motivation is proper the response in Cancer Detection Camps will be good. A careful search and screening is done in these camps. The isolated cases will be sent for diagnosis. The further management is through our networking at various Regional Cancer Centres (R.C.C.).
III. Home Care Team: is being introduced to take care of untreatable terminal cases. The care will include dressing of wounds, maintain air and food passages, care of vital organ functions. To provide pain relief and psychological support (See details under statement of need).
   

BACKGROUND :

Geographical, political and soical context will be assessed during our survey. We shall find out.

- If similar work has beed done already or is going on by any other health agencies viz. Govt. or NGO.

- Available facilities by Govt. or N.G.O.

- Identification of people needing Palliative Care.

- How these identified people were helped in their quality of life.

- The status and working of Panchayat.

- Scope of Home Care Team for disadvantaged and Handicapped Elderly & Terminally ill patients of cancer and other ailments.

Our study and survey will be done under following headings:-

Age, Sex, Address, Occupation, Education, Surroundings,Diet, Habits, Religion & Complaints.The health status thus will be assessed during careful survey.

We shall establish networking with all health agencies working in this area and provide our Home Care Team services as partner in Community services.

We are covering an area of 100,000 population and expect to get 10,000 elderly above the age of 50 onwards, out of which 5000 may come for screening.The younger group may also report for screening which in case we encourage to include in our study.

At national level it has a significance since the society has done massive work in N.E. States, We are planning similar project for Shillong or Guwahati to cover all seven sister states , Darjeeling and Sikkim. A copy of work done in these states is enclosed.

Manpower and Task Force

- Cancer Surgeon - Male One
  Gynacologist - Female One
- Staff Nurse, Two
- Health Educators & Surveyors One
- Project Coordinator One
- Lab. Technicians One
- Radiographer & visiting psychologist. One

All are paid staff. Doctors are on visit basis.

Project Time Table

Cancer Prevention is a continuous process which helps in maintaining regular follow-up.

To achieve our objectives we plan yearly projects. A careful survey with motivation and educating literature supply will help in creating awareness. This process is the key to successful prevention of disease. The detected cases will be transferred to RCC for early diagnosis and management, which helps in control of cancer avoiding complications. We shall have networking with other NGOs & join them in their campaign against cancer.

Our mobile Home Care cancer services team will attend the terminal cancer cases and those who have finished their treatment and are waiting for next follow up.

The Concept of Palliative Care

The palliative care is the total active care of patients at a time when their disease is no longer responsive to curative treatment. The concept is also defined as," The care of terminally ill patients suffering from untreatable diseases."

A terminal illness is further described as one in which:-

- a patient has casual illness with a progressive evolution

- a patient with one or multiple organ failure

- a patient has irreversible progressive complications

- a patients survival is defined in weeks to days.

Its extremely difficult to define terminal illness since it is a controversial issue. The time and acceptance among those involved with Palliative Care decision are crucial for preparing for the patient's imminent death. Therefore, an approach is needed for such patients based on the concept and principle of increasing the quality of life rather than prolonging life.

Moreover, it is said that Palliative Care is borne out of frustration in the minds of oncologists due to their inability to provide comprehensive treatment. Now since the concept has acquired wider application therefore, in last International Conference a terminology evolved describing palliative care as care of people who are facing irreversible"End of quality in life."

WHO (World Health Organisation) defined , "Palliative Care is the total active care of patient whose disease is not responsive to curative treatment. Control of pain, of other symptoms and of psychological and spiritual problem is paramount. The goal of Palliative Care is the achievement of the best quality of life for patients and their families."

However, inspite of various view points and controversies, there is a universal acceptance that Palliative Care should -

- provide quality of life with dignity and comfort

- alleviate pain and other distressing symptoms

- Maintain psychological, physical, social and spiritual potential of the patient

- Rehabilitate the patient and his family

- Affirm spiritual belief that death is the ultimate truth.

Although, the principal and practice of palliative care evolved from our cancer patients suffering with agonizing pain in the advanced untreatable stage, we gradually realized in our practice that pain relief was not the only problem. there are psychological and physical symptoms which need to be attended and same is needed in Elderly care as well as other diseases like AIDS, motor neurone, addicts of drugs and alcohol.

Statement of need to continue Cancer Control programme

with Home Care- Palliative Team

We know that people of all ages get cancer, but it is more common in middle aged and elderly. Almost 0.5 million cases are recorded every year in India.

Cancer will occur in three families out of four in U.S. Every year 40,000 cases are registered at All India Institute of Medical Sciences New Delhi,out of which 10,000 cases are new.

The number of new cases of cancer is decreasing in women. Lung and oral cancers are the leading cause of death in males and breast, cervix & uterine cancers in females, 40% of all cancers in women are cervix cancers. Cancer is caused in two steps by two kinds of agents initiators and promotors.

Initiators start the damage to a cell that can lead to cancer. For example, cigarette smoking.

Promotors usually do not cause cancer by themselves. They change cells already damaged by an initiator from normal to cancer cells. For example alcohol promotes cancer in mouth when combined with an initiator such as tobacco.

About 80% of all cancers may be related to the things we eat, drink and smoke as well as the environment and work place other risk factors, such as genetics are unavoidable.

Head and neck cancers are 28% of all the cancers in India out of which 10% are oral cancers. In all 150 cases of oral cancers are recorded out of 100,000 population.

An overall survey reports that Tobacco related cancers are 48%, life style cancers are 15% and occupational 8%, the rest are unknown and other various cancers in the body. 80% to 90% of such cases report at an advanced stage.

About one million people die prematurely every year due to tobacco related diseases.

In any case cancer does not spare urban or rural population. Those who are educated, sophisticated and rich also show almost equal incidence of certain cancers in comparison to those who are uneducated, villagers, and poor. This is why the life style cancers are as high as 15% of all cancers.

In view of such high incidence and patients at advanced stages,we realized the need to organize cancer detection camps regularly . The problems faced in our camps call for the necessity of introducing Palliative care by a Home care Team.

How the need of Palliative Care Home Team was identified-----

- It was during our survey, cancer detection camps and various rehabilitation progammes incorporated in our ongoing project we observed that -
    Majority of old cases having completed their treatment at various centers keep on complaining of pain. Since they report for treatment at an advanced stage which 80-90% cancer cases do, the response to treatement is very limited. Moreover, such cases have been given either chemotherapy (CT) or Radio-therapy (RT). The therapy leaves toxic effects after 2-3 weeks of the treatment e.g. vomiting, burning pain, loss of appetite causing weight loss and sleeplessness. Under such conditions the patient avoids regular treatment which results in
  - Poor response to therapy
  - Early complication
  - Early recurrence
  - Loss of confidence in therapy
  - Fear of death and bereavement
  - Poor general health
  - Irritability and isolation
  - Irreversible progressive spread of cancer
  - Survival chances and prognosis fails
  - Emotional and psychological problems
  - Involvement of vital organs by disease resulting in untreatable terminal stage.

It is here that a remedy evolved which was given the name of Palliative Care. And to provide such a care by a trained team at the door step of needy is known as Home Care Team.

Aims of Home Care Palliative Services Team

Such a team, in addition to providing suitable help to the problems above mentioned will look into

1. Improvement in quality of life
2. A comfortable life by alleviating pain and distress
3. Maintain dignity
4. Give psychological support during emotional breakdown.
5. Maintain physical, social and spiritual potential
6. Maintain vital functions e.g. eating, drinking, respiration, heart, urination and defecation.
7. Good sleep
8. Dressing of wounds and supply of required medicines
9. Counselling and guidance
10. Meeting with religious and spiritual leaders

Although the concept is only 15 years old it is unfortunate that such services are hardly available. Out of 100,000 patients needing Palliative Care only one patient is fortunate to receive such a care..

The introduction of Home Care Team will be of immense value in our ongoing project without much of extra liability on the project cost, since most of the infrastructure is already available with us.

Home Care Palliative Team

A Team of multi discipline professional is composed to provide a holistic approach which includes-

1. A doctor in Palliative Care to alleviate pain
2. Trained Staff nurse - to dress the wounds and care
3 Psychologist to provide support to patient or other people needing such a care in social context. The psychologist also provides support to families of the diseased and rehabilitation of both.
4. Volunteers to coordinate the visit of team and distribution of medicines
5. Driver
6. Vehicle
7. Rest others as and when needed

Palliative Care through-----

 

HOME CARE SERVICE

To whom and how the services will be provided.

The designed services are planned for patients or older people who are too sick or cannot afford financially to reach to treatment centers. It shall also list older peple who are disadvantaged and handicapped.
The patients of older age needing the services will be coming from various publicity methods viz cable T.V., newspaper ads, radio or by attachments and networking with NGOs working in the same field.
The team will fix the date, day and area regularly recorded through helpline. The mobile medical van equipped with necessary gadgets needed for such services will take the Home Care Team to the patients's door to provide the necessary and timely services.
The team provides multi-professional approach. The doctor in the team diagnoses the ailment, alleviates pain by supplying morphine or giving Nerve Block to relieve the pain. He treats the complaints as presented.
The trained nurse takes care of accessories and the aids the patient is wearing. She dresses the wounds and takes care of urinary and stool bags. cleans catheters and keeps the vital functions of eating, drinking, urination and bowel movements.

The psychologist is a very important member of the team who provide emotional and social support.

He attends to the tormented state of mind, fear and anguish of the patient. The apprehensions of bereavements, guilt and isolation are peculiar problems. He makes up the mind of patient to face pain and problems bravely. He calls religious leaders who keep chanting mantras giving peace by transcendence and brings spiritual leaders to attend the patients' ultimate issues . He makes the patient accept the end, forgive and reconcile.
Thus a meaningful and supported holistic approach is provided in partnership by Home Care Team.
Follow -up - An organised and disciplined programme is worked out so that the given services are continuously montiored and evaluated. The follow-ups are essential part of services in achieving the desired results. The services should be open, sincere and honest by the teammates.A close surveillance is kept.

Information about Cancer Detection Society of India

- Registration 3 Jan. 1991 No S/21603 under Society Act XXI

- Achievements -Please click highlights page

-Aims & Objectives of the Society---

- Prevention of Cancer by -

1. Early detection and diagnosis
2. Early management of isolated cases
3. Mass Awareness in rural and urban population
4. Rehabilitation of positive cases
5. To eradicate social menaces e.g smoking, chewing tobacco, paan masalas and alcohol drinking
6. To educate people about harmful effects of the food preservatives, colouring agents and pollution

Society Decision Making:

All decisions are taken by the Governing Body duly elected after every 2 years. which constitutes-

President, Secretary, Treasurer, Chairman of Committees, e.g. managing, cancer camps, rehabilitation and mobile cancer camps committees.

Experience and Role of the Older people

We have just completed our first project with Help Age India, please see projects page.

We plan to use the services of healthy and unemployed older people. Those who are ready to be volunteers for camps will work free and others will be paid for their part time services like registration, motivation and distribution of cancer educating literature. We have included a few in our management committees also. Moreover, the list of older people already in our team is given with their age and duties assigned. They will be joining our to this project as well. We have a proper and regular networking with Indian Society of Palliative Care, our Seminar like Grow Grey Gracefully was inaugurated by Shri Tejinder Khanna,Lt. Govenor of Delhi,NCT.on 17 Nov. 1997 and various lectures in the Rotary Clubs of Delhi have been quite fruitful. We plan long term projects with Help Age India also. The enclosure will acquaint you with massive work done in this field by the society.See High lights page.

Monitoring and Evaluation

 

We have our management team which checks the survey registers and various survey reports. The cancer detection camps attendance itself will show how well the people are motivated during survey.

Each surveyor is given a target and in each camp 100 to 130 people are screened every week. Such 40 to 50 camps yearly will complete our target of 5000 Elderly. The cancer incidence is 1:1000 and we expect 5 cases in 5000. If this target is not achieved, we shall check the survey records and re-examine the predisposed cases e.g smokers, tobacco, chewers, ladies with vaginal discharge and breast masses. We shall be satisfied if a group of people is found free of these menaces. These subjects will be requested to work as our motivators and facilitators. The work report is made every three months and evaluation is done whether desired target is achieved in survey during these three months.

 

Funding and Cost

We have recently done a project with Help Age India,nearly 60,000 population was surveyed to collect 10,000 persons above 50 years of age out of which 5080 reported for screening in the cancer camps.

The whole of the recurring and nonrecurring expenditure was taken care by Cancer Detection Society of India.This project is being submitted for the favour of entire financial support which includes Cancer Control Programme and Home Care Team for Palliative Care. Since we have almost entire infrastructure no additional liability will be there.

Sustainability

No NGO can survive without funds.There are many institutions at National and International level that look for good projects for long term association as a partner in the community services.Let us work together with a committed patnership.

We appeal to all concerned and varios funding agencies to join hands for such a low profile project.

We are active in N.E. States. The work done in the region by us is also entered in Highlights page. It shall be a pleasure for us as well to join and organize similar cancer control services as a partner in your human endeavours.


Project Cost

Components - I

Recurring (for one year)

Salaries

General Duty Doctor (part time)

8000 x 12 months 96,000/-
Gynaecologist,each camp. 1000 x 52 weeks 52,000/-
Cancer Surgeon 1000 x 52 weeks 52,000/-
Staff Nurse One 4000 x 12 months 48,000/-
Auxilliary Health Worker (Two) 3000 x 12 months 72,000/-
Health Surveyor (Two) 3000 x 12 months 72,000/-
Project Coordinator 5000 x 12 months 60,000/-
Driver 3500 x 12 months 42,000/-
Venue Rent 5000 x 12 months 60,000/-
Visits of Support group like Psychologists Physiotherapist, Spiritual Scientist etc.   25,000/-
  Total 5,79,000/-
Component - II (Recurring)    
- Publicity material & Stationary   50,000/-
- Biopsy, FNAC, Endoscopy material   50,000/-
- Chemicals & Preservatives   35,000/-
- Disposables & Dressing materials   20,000/-
- Medicines to be supplied in camps & Home Care Service   40,000/-
- Photography   15,000/-
- Petrol   35,000/-
Miscellaneous & Incidental   20,000/-
  Total 2,65,000/-
     

Component - III (Non Recurring)

   
Mobile Van - will be provided by Cancer Detection Society of India    
  Grand Total 8,44,000/-

Projects:-
1.

 Projects Done      Click Highlights

2. Projects being Done  (on going projects)

On Going projects      (Join Us)

1.

 Hospice Services        Click Hospice page for details

Home care services for terminally ill cancer patients

2. Tibetan cause - Cancer Control Programme for Tibetans
3. Cancer Services Centre & Hospice Services (Dharamshala)
4 Cancer Survey programme with European Commission
5. Orphanage School - Free medical care of 350 orphans
6. N.E.States - follow up cancer survey - Jan 03 on wards

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