October 28, 2009

Annex 2: Palliative Care Taskforce Recommendation [177]

Strategy for palliative care:

National Cancer Control Program

11th five year plan – 2007- 2012

Palliative care and Rehabilitation committee

Co-ordinator: Dr M.R.Rajagopal, Chairman, Pallium India.

Members:

Dr Dinesh Goswami, Guwahati
Ms Kumari Thankam, RCC, Tvm
Dr. Firuza Patel, PGIMER, Chandigarh
Dr Gayatri Palat, AIMS, Kochi
Ms Harmala Gupta, Cansupport, Delhi
Dr. Maryanne Muckadan, TMH, Mumbai
Ms Poonam Bagai,Cankids, Delhi;

Dr Prabha Chandra, NIMHANS, Bangalore
Dr Reena Mary George, CMC, Vellore
Dr Sushama Bhatnagar, AIIMS, New Delhi
Dr. Sureshkumar, Calicut, Kerala
Dr. Vijaya, RCC, Trivandrum

Address for correspondence: [Omitted]

EXECUTIVE SUMMARY

1. Current Status and Need:

In the year 2004, over 20 lakhs Indians had cancer.
More than 80% (16 lakhs) of them were incurable at the time of diagnosis, and needed palliative care.
By year 2015, it is projected that the total prevalence of cancer in the country would be 25 lakhs.
By 2015, even if the mortality rate were to come down to the international standard of 50%, 12.5 lakh Indians would still need palliative care.
All patients need supportive care during treatment.
Palliative care is mentioned as pain relief and terminal care in NCCP; but not practiced as an integral part of cancer care in most RCCs and oncology wings.
Oral morphine, the most important medication for relief of cancer pain, is not available to more than 99% of patients.
There are very few doctors and nurses in the country with any palliative care education.

What is palliative care, and what is supportive care?

Palliative care attempts to improve quality of life of patients and families through assessment and management of factors reducing quality of life, like pain and other symptoms, as well as psycho-socio-spiritual problems. Most of those undergoing curative treatment need supportive care – application of principles of palliative care – reducing suffering and improving compliance to treatment.

Common barriers to access to palliative care that have been identified are:

3.1 Lack of palliative care services in most of the country.

3.2 Lack of awareness among professionals, administrators and the public.

3.3 Lack of facilities for palliative care education in the country.

3.4 Unrealistic narcotic regulations preventing access to opioids for those in pain.

3.5 Lack of clear guidelines for those wishing to provide palliative care services.

4. WHO recommendation for palliative care development: The World Health Organization (WHO) recommends that, to be effective, any palliative care policy has to address all three sides of the following triangle with the State Policy at the base, their broad objective being to improve access to palliative care to all those who need it.

5. Broad objectives: To develop

A.   Strategy for formulation of Palliative Care Policy, including involvement of non-governmental organizations

B.   Strategy for development of Palliative Care Delivery services including manpower

C.   Strategy for improved, safe, availability of opioids for pain relief

D.   Strategy for Palliative Care Education and Training of professionals and others including volunteers.

E.   Strategy for Advocacy, Awareness Building and Community Participation

6. POLICY:

6.1. Objective:

6.1.1. Declaration by NCCP that palliative and supportive care should be essential parts of cancer care.

6.1.2. Declaration by all states & UTs that palliative and supportive care should be essential parts of cancer care.

6.2. Strategy

6.2.1. Include ‘provision of palliative and supportive care with community participation’ as a separate objective of the revised NCCP

6.2.2. Inclusion of a palliative care provision in the Health Policy of State Governments

6.3. Coverage: Health policy of centre and 50% of states/UTs

6.4. Timeline:

6.4.1. Inclusion in NCCP before 11th FYP

6.4.2. Inclusion in State Policy – over first 2 years of FYP

6.5. Budgetary requirement: Nil

7. DEVELOPMENT OF PALLIATIVE CARE SERVICES:

7.1. Objective:

7.1.1. Integrate Palliative Care into cancer care in all RCCs and 100 other cancer treatment facilities in the country

7.1.2. Strategy:

7.1.2.1. RCC Scheme: Starting palliative care service in all Regional cancer centers

7.1.2.2. Out-of-RCC Scheme: Starting palliative care services in 100 other institutions (DCCP/Oncology Wings of Medical Colleges/NGOs)

7.1.2.3. Coverage: 25 RCCs and 100 other institutions in the country.

7.1.2.4. Timeline:

7.1.2.4.1. Year 1: 5 RCCs and 10 other Cancer treatment centres

7.1.2.4.2. Year 2: 5 RCCs and 25 other Cancer treatment centres

7.1.2.4.3. Year 3: 5 RCCs and 25 other Cancer treatment centres

7.1.2.4.4. Year 4: 5 RCcs and 25 other Cancer treatment centres

7.1.2.4.5. Year 5: 5 RCCs and 15 other Cancer treatment centres

7.1.2.5. Budget:

7.1.2.5.1. RCCScheme: Rs 8.625 crores and

7.1.2.5.2. Out of RCC Scheme: Rs 32.828 crores

8. OPIOID AVAILABILITY

8.1. Objective:

8.1.1. Ensuring simplified narcotic regulations in all states and union territories of India with realistic standard operating procedures.

8.1.2. Ensuring uninterrupted availability of oral morphine in all regional cancer centers and in all hospitals where palliative care facilities have been started.

8.2. Strategy:

8.2.1. Opioid Availability Workshops: Up to 3 workshops in 5 years by each RCC involving palliative care professionals, NGOs and officials from concerned Departments in the State, and of the adjoining State/UT where there is no RCC.

8.2.2. NGOs in the field are already involved in this work to a limited extent. This task force can find a team of facilitators, who can be available to extend expert help at these workshops.

8.3. Coverage: All States and Union Territories

8.4. Timeline: 3 workshops each year for every year of FYP in every RCC.

8.5. Budget: Rs 1.125 crores

9. PALLIATIVE CARE EDUCATION AND TRAINING:

9.1. Objectives:

9.1.1. Develop training modules for

9.1.1.1. Doctors

9.1.1.2. Nurses

9.1.1.3. Social workers/counselors

9.1.1.4. Volunteers

9.1.2. Provide palliative care education to professionals and volunteers.

9.1.3. Ensure effective training in palliative care at least in all oncology post graduate programs including practical exposure and inclusion in the examination process.

9.1.4. Develop tools and methods for Qualitative Assessment of Palliative care Services

9.1.5. Development of at least one nodal palliative care training center in five geographical regional zones – North, Northeast, West, East and South of India.

9.2. Strategy:

9.2.1. Training For palliative care doctors and nurses of 25 RCCs and 100 Out-of-RCC Centres (budget provided in RCC and Out of RCC Scheme in item 7)

9.2.2. Sensitisation in Palliative Care for rest of the staff of 25 RCCs and 100 Out-of-RCC Centres (budget provided in RCC and Out of RCC Scheme in item 7)

9.2.3. 12 Working Group Meetings, each with 6 faculty members for development of training modules for Palliative Care for Professionals and Undergraduates, and for training for Social Workers/Counsellors (to be done over 3 years)

9.2.4. 6 Working Group Meetings for developing tools and methods for Qualitative Assessment of Palliative Care Services rendered to be done over 3 years

9.2.5. One month rotation in palliative care for oncology postgraduate residents in RCCs/Palliative Care Centres/Regional Training Centres.

9.2.6. Upgradation of one each palliative care centre in five geographical zones in India to Regional Training Centres

9.3. Coverage:

9.3.1. All States and UTs, 25 RCCs and 100 Cancer Treatment Centres

9.4. Timeline: As given in spreadsheet attached.

9.5. Budget:

9.5.1. Training and Sensitization provided in RCC and Out of RCC Schemes

9.5.2. Development of teaching modules: Rs. 0.12 crores

9.5.3. Development of Quality Assessment Tools: Rs 0.06crores

9.5.4. Development of Regional Training Centres: Rs 2.8 crores

10. PATIENT ADVOCACY & AWARENESS BY NGOS/INSTITUTIONS

10.1.Objective:

10.1.1. Development of Peer Support Groups for cancer Patients and Families

10.1.2. Promotion of public awareness and promotion of community and NGO participation in palliative care

10.2.Strategy:

10.2.1. Hold 4 Peer Support Meetings per year in all 125 Palliative Care Centres

10.2.2. 600 Palliative Care Awareness Programs by NGOs/Institutions

10.3.Coverage: All States and UTs,

10.4.Timeline: Over 5 years

10.5.Budget:

10.5.1. For Peer Support Meetings: provided in RCC and Out of RCC Scheme in item 7.

10.5.2. Budget for 600 Awareness Programs Rs 0.48 crores

Note:

More specific timelines and outcome measures are attached in spreadsheet
More detailed strategy for each of the above schemes follows.

SCHEME 1: RCC SCHEME

Starting fully functional palliative care service in all Regional cancer centers (or strengthening them where they exist), which should have the following:

Full-time personnel: One doctor, one nurse and one social worker
Essential drugs including morphine available free for poor patients (appendix 1)
Inpatient facilities available for palliative care
Palliative care training available in the form of two days sensitization course as a CME – every six months to majority of doctors, nurses, social workers and volunteers (appendix 2,3,4 &5)
All oncology residents rotated through the palliative care program for one month and nursing students for at least one week each
Involvement of at least one NGO for palliative care delivery
One functional home visit program

Coverage: All 25 RCCs in FYP

Timeline: 5 RCCs each year over 5 years of FYP

Budget:

Scheme 1	RCC Scheme	per month	per annum	FYP in Rs	FYP in Cr
1.a	Staff
I full time doctor+nurse + social worker	50000	600000
1.b	Drugs(as per Essentail Drug List) for poor patients	200000
1c	Training
For Staff in Palliative care	100000
For sensitisation for rest of the staff	50000
Total Training	150000
1d	Homecare(RCCs Contribution to Homecare Service, bal from NGO)	200000
Total Per RCC	1150000
Scheme 1	Total For 25 RCCs over FYP	86250000	8.625

OUTCOME MEASURES

Number of patients seen in palliative care unit
Number of personnel being trained including percentage of RCC staff
Amount of morphine consumed
Number of NGOs involved
Quality Assurance measures incorporated (as developed by Working Group by end Year 3 of FYP)

Appendix

1. Essential drug list

2. Volunteer’s –training module

3. Module for sensitization course

SCHEME 2: OUT OF RCC SCHEME

Starting palliative care programs in oncology departments in Medical Colleges/other hospitals or by non government agencies, with community participation: (institutions willing to take this up are to be asked to apply for support under this scheme; 100 centers are to be selected; 1-5 per state and one per union territory). Each of these should have the following:

Full time or part-time personnel: One doctor, one nurse and one social worker

Essential drugs including morphine available free for poor patients (appendix 1)

Inpatient facilities available for palliative care

Palliative care training available in the form of two days sensitization course as a CME – every six months - to majority of doctors, nurses, social workers and volunteers (appendix 2,3,4 &5)

All residents, nurses and trainees rotated through the palliative care program, where applicable

Involvement of at least one NGO for palliative care delivery

One functional home visit program

Quality assurance measures incorporated

Coverage: 100 Cancer Treatment Centres in the Country

Timeline: 10 Centres in Year 1, 25 each in Years 2, 3 and 4, and 15 in Year 5 = Total 100

Budget:

Scheme 2	100 Other Palliative Care Centres -PCCs (DCCP/Oncology Wings of Medical Colleges/NGOs)	per month	per annum	FYP in Rs	FYP in Cr
2a	Staff
I part time doctor +nurse+social worker	50000	600000
2.b	Drugs(as per Essentail Drug List)	200000
2c	Training Courses for Drs and Nurses in Centre	100000
2d	Peer Support Meetings 4 per year@8000	32000
2e	Homecare(PCCs Contribution to Homecare Service, bal from NGO)	200000
Total Per Palliative Care Centre	1132000
Scheme 2	Total For 100 Centres in Country	328280000	32.828

OUTCOME MEASURES

Number of patients seen in palliative care unit
Number of personnel being trained including percentage of RCC staff
Amount of morphine consumed
Number of home visits
Number of NGOs involved
Number of volunteers involved in palliative care
Quality assurance measures incorporated Services (as developed by Working Group by end Year 3 of FYP)

Scheme 3: OPIOID AVAILABILITY WORKSHOPS

All palliative care centers must have morphine. An updated document on procurement of oral morphine will be developed with assistance from NGOs and provided to all palliative care centers. This is to help hospitals and centers to procure oral morphine in a more effective way. Guidelines will be made for states with and without the amended rules.

To ensure availability of morphine in all palliative care centres, only those units which have a licence for oral morphine, will be provided for funds to set up a palliative care service (as described above).

RCCs should facilitate the procurement of licences for morphine by other palliative care centers. This can be done by organising morphine availability workshop in all states and Union territories conducted by each RCC.

Opioid Availability Workshops : Up to 3 workshops over the 5 year period organised by each RCC involving palliative care professionals and NGOs, with all concerned Departments at State and District levels in the State, and of the adjoining State/Union Territory where there is no RCC. This task force will recruit a team of facilitators who can act as resource persons at these workshops and help with follow up.

Coverage: All States and Union Territories

Timeline: 3 workshops each year for every year of FYP in every RCC

Budget: Rs 0.75 crores

Scheme3

Opioid Availability Workshops

per Workshop

per annum

FYP in Rs

FYP in Cr

Maximum of 3 workshops in 5 years @ Rs 1 lakh per workshop for 25 RCCs

Expenses including travel for facilitators to attend these workshops and to continue follow up

100000

50000

7500000

3750000

0.75

0.375

Scheme 3

Total

7500000

1.125

Outcome Measures:

Number of States and UTs with Simplified Narcotics Rules and simple standard operating procedures for their implementation

Annual consumption of morphine

A system of proper documentation of morphine stocks and dispensing

SCHEMES 4 AND 5: EDUCATION, CURRICULUM DEVELOPMENT AND REGIONAL TRAINING CENTRES

Development of Regional Palliative care Training Centres:

Capacity development of five palliative care centers in five geographical regions in the country to empower them to develop as nodal training centers which can take on education and training of personnel in the region

The role of Regional Training Centres:

To train personnel in palliative care by conducting “hands-on” training courses of four to six weeks, which will be conducted for doctors, nurses and social workers by these regional centers.

Selection of Regional Training Centres:

To set up the Regional centers, applications will be invited from institutions interested in taking up this program and selection will be done in collaboration with RCCs in the region. A teaching module for the training programs will be developed in collaboration with NGOs in the field like Indian Association of Palliative Care (IAPC).

The task force will request NGOs in the field like Indian Association of Palliative Care (IAPC) to set standards for training in all regional centres - by a committee that will oversee and discuss with the Regional training centres, ensure uniformity, help with resource persons, evaluation and monitoring and development of a module.

Coverage: All States and UTs, 25 RCCs and 100 Cancer Treatment Centres

Timeline: Given individually in attached spreadsheet.

Budget: Training and Sensitization provided in RCC and Out of RCC Schemes (Item 7)

Scheme 4	Education & Curriculum Devpt	Per meeting	Total in lakhs	Total in crores
12 Working Group Meetings, each with 6 faculty for development of teaching modules/Curricula for Palliative Care Professionals and Undergraduates to be done over 3 years	1,50,000	1800000	0.18
6 Standard Setting Group Meetings for developing tools and methods for Qualitative Assessment of Palliative Care Services rendered to be finished in 3 years	1,50,000	900000	0.09
Scheme 4	Total		2700000	0.27

Scheme 5	5 Regional Training Centres	per month	per annum	FYP in RS As per time-line	FYP in Crores
Staff
1 full time doctor+nurse+Secretary	50000	600000
Office	100000
Course Material	200000
AV Aids	200000
Library	100000
Visiting Faculty Expense 4 courses*2 faculty	200000
Total per Centre p.a.	1100000
Scheme 5	Total for 5 Centres over 5 years per timeline	29400000	2.94

Appendix- 4: List of currently available training centres, courses and contents

OUTCOME MEASURES

Teaching modules/Curriculum for Courses in Palliative

Tools and methods for Qualitative Assessment of Palliative Care Services

List and Number of courses run

Number of Doctors, Nurses, social workers and volunteers trained

Number of Training centres accredited every year

Scheme 6: PATIENT ADVOCACY & AWARENESS BY NGOS/INSTITUTIONS

Awareness programs: Aimed at improved awareness among public about the possibilities of pain relief and palliative care to decrease suffering in the community and to improve participation of the community in palliative care.

Peer Support Meetings 4 each year provided

For all 25 RCCs in the Reintegration and Rehabilitation Program

For all 100 Palliative Care Centres in the Out of RCC Scheme

Palliative Care Awareness Programs

Scheme 6

Patient Advocacy & Awareness by NGOs/Institutions

Per Awareness Program

per annum

FYP in Rs

FYP in Cr

600 Palliative Care Awareness Programs ~120 p.a.

(Publicity Rs 1000+ Handouts/posters 6000+Venue/AV 600+Honorarium for faculty Rs 400)

8000

960000

4800000

0.48

Scheme 6

Total

4800000

0.48

Outcome Measures:

Number of Programs conducted

Number of Participants

Annex 3: Palliative Care Policy Kerala

The Palliative Care Policy for the State of Kerala

The Government of Kerala has recently declared a palliative care policy highlighting the concept of community-based care and giving guidelines for the development of services with community participation for the incurably ill and bedridden patients. (HEALTH & FAMILY WELFARE (J)DEPARTMENT GO(P) No 109/2008/H&FWD Dated Thiruvanathapuram 15.4.2008). The new policy aims at providing palliative care to as many needy as possible in the state. The policy which put forth short-term as well as long-term objectives envisage the guiding principle of home-based care, palliative care as part of general health care and adequate orientation of available manpower and existing institutions in the heath care field. The Government has made it clear that the governmental machinery shall work in harmony with Community Based Organization (CBOs), Non-Governmental Organization (NGOs) which have acquired training in delivery of palliative care. In practical terms, the document aims at mobilising volunteers locally, providing them with training in palliative care, empowering these trained groups to work with the health care system. The Government also expects the local self governments to offer good support to the community volunteers in this activity.

The action plan with the policy has the following immediate goals in the next two years

To train at least 300 volunteers in palliative care in each district
To conduct sensitisation programmes for 25% of all doctors, nurses and other health/social welfare workers in the state
At least 150 doctors and 150 nurses in the state to successfully complete the Foundation Course in Palliative Care
At least 50 more doctors and 50 more nurses in the state to successfully complete six weeks training in palliative care (Basic Certificate Course in Palliative Care).
To develop more than 100 new community-based palliative care programmes with home care services in the state with active participation of CBOs, LSGIs and local government and other health care institutions
To develop common bodies/platforms in at least 25% of the LSGIs to coordinate the activities
To develop at least four more training centres in the state for advanced training in palliative care
To introduce palliative care into the training programmes for elected members to LSGIs and concerned officials