Sometimes also insecurity of losing patients refrain them to refer to palliative care 

 

Green - Samsudheen                              

Barriers

1.  In Kerala palliative care giving centres are more in both Government and  NGO level. Still access to existing palliative care services are difficult. In middle and high income group they are not availing the services due to mainly prestige issues and access to very sophisticated hospitals with well equipped life supporting system. Even though the multi system failed cases  they are admitting in Critical care ICU and giving all medical support. Lack of awareness among the medical fraternity, pressure  from the relatives to do something with the dying patient.

2. Various medical system (Modern
medicine & Ayush) can be integrated,  for a common cause, betterment of the problem, but various reasons that is not materialised. 

3.  Lack of awareness among
the general public and the medical fraternity about the availability of palliative care services. Public should be educated the need of palliative care and die with dignity and pride.

4.   Most of the  of the Palliative
care service are mainly focussing to relief from physical symptoms and ignoring
psychosocial and spiritual components.

Action Plan

   a. Awareness programmes to  the medical fraternity, for this a proper mindset should develop, for    that various sensitasion programmes to be conducted. Along with proper orientation and teaching  from school level. 

   b. Mind set of the family should be addressed. For this various programmes can be arranged with the help of community  leaders, religious leaders, and many social working group. With the help
of print and social media we can achieve the result very fast .Give proper training and orientation should be given.

  C. Also seek the support of
Local Governing Bodies (such as panchayats, municipalities, corporations), ASHA workers, Community nurses and identifying local volunteers and providing them training sessions on palliative care. In kerala the community volunteer participation is much more and working very effectively. 

d. Muti disciplinary approach with the help of various system and
departments, including psychiatry, rehabilitation, surgical, medical etc

-          Lack of coordination between health care facilities where there is no a well-planned system to share patient’s information.

-          Lack of specialist in palliative care field we steel have few stall received palliative care as specialty and those one’s are not employed in that field.

-          Lack of integration of palliative care as a specialty in medical school is big problem in the country where to produce palliative care specialist steel a challenge.

-          Lack of hospice and palliative care centers we have only two and they are located in the Kigali city people from village can’t benefit from them.

-          Lack of trained community volunteers,

-          Lack of social support from NGOs.

-          Lack of staff most of palliative care team into different health facilities do palliative care as additional responsibility and this may affect services they deliver to patients due to work overload.

-          Lack of infrastructure, no places where to create palliative care unit into different health facilities. 

Action plan:

Increasing palliative care awareness and advocacy.

Government to make effort in palliative care activities and put it in budget plan.

Involves donors and NGOs for financial support

 There is a saying `Palliative Care adds life to the days, not days to the life.’ This adding life to the dying is not that much easy. Because Pal Care is a Holistic approach. The barriers in integrating this approach are 

 

1)      Lack of knowledge – Lack of knowledge among the general people and the Health care providers. The health care providers still focus on the disease, not the patient. 

2)      Absence of a policy—As there is not a complete policy on it, the service is fragmented, incomplete. 

3)      Lack of collaboration among the primary, secondary and tertiary level health services.

4)      Absence of leadership 

5)      Absence of involvement of the community leaders like Union Parishad Chairman, ward councilor, city corporation Mayor and others. 

6)      Urbanization also a barrier here. Because in the cities, people are so busy and isolated that they find it difficult to build a compassionate relationship with their neighbours and offer help.

7)      The health service system itself is a barrier in integrating PC. The system don’t pay attention to the patients’ emotional and spiritual need. They  just focus on their physical need.

8)      Lack of manpower---- There is a shortage of trained doctors, nurses and social workers/volunteers on PC.

9)      Lack of funding--- In this  middle income country, the financial crisis hinders us to provide free of cost medicine, home care and other support.

 

Action Plan

 

1)      A strong policy needs to be prepared so that every sector understands their role. The policy must emphasize collaboration among different level health care service (primary, secondary and tertiary).

2)      Strong leadership to strengthen community’s involvement to provide emotional, financial and spiritual support

3)      Increased budget in primary health care service. So that the dying person can visit his nearby health care centre and get symptomatic treatment and home care service if needed. 

4)      More awareness raising programme in community

5)      Changes need to be brought in medical curriculum so that every physician learns to treat a patient, not a disease. PC should be incorporated in MBBS and BSc nursing.

Current barriers to integration.  Of clinical practice -      Action plan to tackle this barrier. Try to make action plan SMART – specific, measurable, achievable, realistic, time oriented. 

Barriers

Barriers identified in relation to integrating palliative care in daily clinical practice included lack of hospital policies about palliative care activities, cultural influences, denial or rejection of diagnosis by patients, inappropriate attitude of health care workers, patients failing to keep check-up appointments and financial implications of setting up a dedicated palliative care team.

Key issues in the early integration of palliative care include relationship-building across multiple health systems and specialties; development of a standardized definition of palliative care, making clear that it should be fully integrated with cancer and other terminally ill diseases.

Action plan

Specific

The goal of palliative care is, therefore, to improve the quality of life of both patients and This is why it is best administered by an interdisciplinary, multi-dimensional team, comprising doctors with various specialties or systems, nurses, counsellors, social workers, and volunteers. 

Obstacles in the growth of palliative care in India are too many and not only include factors like population density, poverty, geographical diversity, restrictive policies regarding opioid prescription, workforce development at base level, but also limited national palliative care policy and lack of institutional interest in palliative care

WHO and other international organizations lay emphasis on providing physical, psychosocial, and spiritual needs and to help patients achieve quality of life with supportive families. It was to address such needs and so provide holistic care that the concept of friendly neighbours who have been trained in palliative care took shape and so the Neighbourhood Network of Palliative Care (NNPC) was formed in 200.

This is a joint venture with four NGOs and eight palliative care centers which attempts to develop a sustainable “community led” service capable of offering comprehensive Long Term Care (LTC) and Palliative Care (PC) to those in need. NNPC proved the theory that community ownership can work wonders even in financially poor communities. 

Indian palliative care development at its most successful has innovated and produced services like NNPC which provides an exemplar model of community-based palliative care for low-resource countries worldwide. The NNPC is designated a WHO Demonstration Project for providing cost-effective community-based home care for late stage cancer patients.

Measurable.

In India, the earliest facilities to deliver palliative care within cancer centers were established in some places like Ahmedabad, Bangalore, Mumbai, Calicut, Trivandrum, and Delhi in the late 1980s and the early 1990s. Palliative Care was initiated in Gujarat in 1980s with the opening of a pain clinic and palliative care service under the department of Anaesthesiology at Gujarat Cancer and Research Institute  a Regional Cancer Centre in Western India. One of the important steps in the history of palliative care development in India was also began from here; forming of Indian Association of Palliative Care (IAPC). In 1986, Professor D’Souza opened the first hospice, Shanti Avedna Ashram, in Mumbai, Maharashtra, Central India. At a similar time, pain clinics were established at the Regional Cancer Centre, Trivandrum, Kerala, with the assistance of a WHO subsidy. Demonstrated through both an expansion in the number of services as well as other key events and initiatives The IAPC was registered as Public Trust and Society in March 1994 in Ahmedabad. 

Morphine availability was a considerable problem to the provision of hospital and palliative care. The Narcotic Substances and Psychotropic Substances (NDPS) act of India brought out in 1985 made procurement of morphine so difficult and had a negative impact such that use of morphine in the country dropped steeply in succeeding years. 

The Government of India in 1998 gave instructions to all state governments to amend their narcotic regulations, simplifying them. But response from the state government was so poor such that workshops were done in many states in order to improve the situation.

Palliative care is an important and essential part of cancer care therapy and twelfth 5-year plan makes a special provision for it. At least 10% of the budget needs to be earmarked for these services at level of cancer care services. For palliative care there will be dedicated 4 beds at the district hospital. Doctors, nurses, and health workers will be trained in basic palliative care. One of the doctors in the District hospital needs to have a 2 weeks training in palliative care. 

Achievable.

Approaches to improve the application of palliative care include education, training, and research endeavours. Educational efforts in palliative and end-of-life care have targeted nurses, physicians, and other disciplines associated with clinical care. 

WHO recommended three foundation measures for developing Palliative care—Governmental policy, Education, and Drug availability. They are important for establishing a sustainable Palliative care, and achieving meaningful coverage. 

The introduction of Palliative care into the curricula of the under graduate education of all doctors and nurses is recommended as an efficient way to broaden the base of Palliative care coverage at the national level. 

A milestone has been achieved in Palliative care as MCI has recognized MD in Palliative Medicine from this year and this will help it to develop as a specialty in our country

Realistic

Home-based palliative care services are becoming increasingly popular with care being taken to the doorstep of the patient. Ideally, this is where people are most comfortable at the end of their lives, surrounded by their loved ones. It is also well suited to conditions in India where a family member is usually available and willing to nurse the sick person. The aim of home-based care is ultimately to “promote, restore, and maintain a person's maximum level of comfort, function, and health, including care toward a dignified death.” 

Home-based care models are also generally person-centered and comprehensive, with the aim to take into account factors such as culture, religion, and value systems, and respect people's rights to privacy and dignity, which fits in well with its “community-driven” philosophy.  

And the central government will have to develop a policy which would provide guidelines for general application and provide an umbrella of support, especially in matters relating to opioid availability and education. Coordination and partnerships with hospital  programs is a major feature as palliative care.  As an interdisciplinary endeavour, the field of palliative care includes medicine, nursing, social work, psychology, nutrition, and rehabilitation although depth of support available from each discipline varies from institution to institution. Palliative care does require passion and commitment

Time oriented

Educating people in palliative care through programs offered overseas can be useful in some instances, but it is not always an ideal solution. The way forward is to draw on the existing, successful models that have been described, to develop usable and dynamic educational initiatives within India itself, from model palliative-care teaching centers attached to inpatient or community units, thereby making close and relevant partnerships between theory and practice.  

The centers for palliative care teaching should be culturally sensitive and relevant to the Indian situation. Collaborations between the government of India, Indian Association of Palliative care and WHO, provide further optimism regarding future development. India has the potential to lead the way and enlighten others rather than being subservient to those countries that enjoy resource wealth. IPM Calicut is doing good work in this regard. 

Unfortunately, there are various obstacles to fulfilling patients’ and their families’ hopes because of the heterogeneity of various geographical, social and medical backgrounds among the various geographical areas. One model cannot fit all. Given the diversity each region will need to develop its own policy that suits its needs and its social and cultural background with holistic approach.

 

 

 

2.           Barriers to the growth of palliative care in my area of clinical practice are 

·       There is disbelief amongst the medical fraternity at large in palliative care and hence it is not integrated with the very first multi-disciplinary tumour board held every day in the hospital to discuss the treatment plan of a newly diagnosed cancer patient. 

·       Also, most of our clientele are from very poor backgrounds and are unaware of palliative care and its value.

·       Limited & insufficient prescription of narcotics is another reason for inadequate and sub-optimal pain relief in cancer patients. 

· Non-availability of trained manpower in palliative care at all levels of clinical practice.

 
3.           To overcome these barriers, a specialist in palliative care should be made part of the multidisciplinary tumour board, who would be participating in all the discussions and treatment plans of newly detected cancer patients. 

Creation of a palliative care team consisting of consultants, nurses & patient care attendants, to attend to the needs of patients. 

Training of medical & paramedical staff in palliative care, along with training sessions for patients & caregivers can be organized.  Dedicated IPD services to affordable clientele can be considered. Training the doctors on opioid uses, doses, abuses, side effects, and regulations will also help in prescribing an appropriate dosage of narcotic drugs for adequate pain relief. 

Systematic and continuous education for medical staff and training of new staff to cater to the community at large can be brought about. This along with community training during outreach programs for cancer detection can be a holistic approach to overcoming the existing barriers to palliative care. 

1. Lack of knowledge and training.

1. Lack of knowledge and training.

1. Lack of interest and poor investment.

1. Lack of funding for training.

2. Lack of funds being developing country.

3. Lack of infrastructure for training.

4. Medical business tendency especially in providing home-based palliative care.

5. Misconception of palliative care as a Nonprofitable business. 

6. Lack of interest and poor investment.

7. Empathy for investment in end-stage patients, being a poor outcome.

8. Inequal distribution of health services among different strata of society.

9. Long and complex process for getting benefits of palliative services specially from NGOs.

1. Lack of knowledge and awareness.

2. Unemloybility causing Financial hardship.

3. Lack of knowledge about the staging of cancer.

1. Lack of knowledge and awareness.

2. Some families have poor affordability of palliative care services

3. India is moving towards a Nuclear family model from a joint family so less availability of helping hands. 

1. More focused on career and economic issues nowadays, Less time to contribute.

1. Inequal distribution of health services among poor, middle class, and rich.

2. Lack of funding for palliative care services.

3.No adequate publicity about the palliative care domain through print, and electronic media.

4. Very few government and non-government investors.

5. No training and skill development programs are presently available in the country.

6. Palliative care services have not reached till primary care level.

7. Geographical diversity, and culture, across the country, poverty is still an issue.

8. Strict morphine distribution regulation.

8. Transportation challenges in hard-to-reach areas, tribal areas, jungles, etc.

1. Knowledge deficit regarding palliative care.

1. Knowledge deficit regarding palliative care

1. Knowledge deficit regarding palliative care

2. Lack of manpower trained in palliative care services.

1. Lack of manpower trained in palliative care services.

2. Lack of funds and financial support by the government.

3.No written plan of specialized services in accordance with the proportionate share of the overall demand

4. Absence of government strategies, consistent national policies

5. Inadequate training and lack of awareness and expertise of palliative care staff.

6. Lack of educational guidelines and protocols on healthcare, lack of transparency of duties, poor teamwork, and inefficacy of Insurance.

1. Poor knowledge about palliative care.

2. Low income(financial problem)

1. Poor knowledge about palliative care. 

2. low income (financial problem)

1. Poor knowledge/attitude about palliative care. 

2. Poor Budget.

3. Preexisting rituals and misconceptions about palliative care

1. No Government policy related to palliative care.

2. Expensive opioids hence poor affordability for common people.

3. Lack of opioid stocks due to poor government policy.

4. Afraid of opioid addiction if it is easily available in the country.

1. Lack of awareness, misconceptions regarding palliative care.

1. Lack of awareness, and misconceptions regarding palliative care.

1. Lack of awareness, and misconceptions regarding palliative care.

2. Poverty.

3. Long and complex process for getting benefits for palliative services especially from NGOs.

1. Lack of awareness, and misconceptions regarding palliative care.

2. Poverty.

3. Unavailability of suitable Painkillers.

4. Long and complex process for getting benefits for palliative services especially from NGOs.

5. Unavailability of opioids and threat of misuse of opioids and benzodiazepines.

B. As a group, select ONE of these and develop an action plan “SMART” (specific, measurable, achievable, realistic, time-oriented)

Answer: What we found common issues among all countries are:

       We want to enhance awareness, and knowledge of palliative care among the general public, healthcare staff, and even policymakers.


S -Specific
1. We want to enhance awareness, and knowledge of the general public and health care staff as well as of policy makers/administrators.
2. By this we want the on-the-ground application of palliative care services so that an individual, family, and the community can easily, access, and afford the services.
3. Each and every person should have died in a painless, without suffering and dignified death.
4. This we want to achieve within the next 5 years.
5. We need to include syllabi of palliative care in all domains of medical studies so that a set of trained primary care physicians, technicians, and support staff can be developed. 6. Awareness and knowledge about palliative care are very less at present, causing costly, inaccessible, and unaffordable palliative care services in countries. Few palliative care services are available which are mainly clustered in metro and bigger cities, and also few investors are interested in these services.
7. General public is still deprived of knowledge about various health & financial schemes, and facility provisions in respect of palliative care services which can be better shared by awareness and knowledge enhancement.   
     
 M-Measurable Indicators can be used:
1. Increase in OPD loads due to end-stage patients seeking palliative care services.
2. Increase in No. of end-stage disease patients admitted in hospitals (as compared to base year).
3. No. of specific beds (medical oncology and surgical oncology)created at nursing homes, hospitals, and tertiary care centers.
4. Increase in the number of palliative care trained health personnel (Doctors/Nurses/Technicians)
5. Budget and Fund allocation dedicated to palliative care services.Policies/guidelines/protocols developed by the government.
6. Persons enrolled in various Governmental schemes as beneficiaries.
 
A-Achievable
1. Awareness and knowledge through lectures, print media, electronic media, campaigns, and other means will definitely enhance.
2. This can also be achieved by community participation and the inclusion of members of Panchayati Raj Institutions for sharing knowledge.
3. Developing countries are still way behind developed countries like USA, UK, and western countries where it is an old concept and already has evolved. When we see their method of development it is clear this is achievable in the next 5 years.
4. NGOs, Social Groups, and charity organizations can be motivated to invest and participate in campaigns.

R-Relevant
1. Elderly population is neglected in many poor resource countries, especially when they are in their terminal stage of disease, each person has the right to leave in a dignified manner.
2. This will also help in the social, cultural, and moral development of the youth of the country.
3. As per the 95% Rule patients in Palliative care spend 95% of their time outside institutions of care means care is delivered by family, friends, and neighbors. An informal way of palliative care is prevalent in poor and developing countries so awareness and knowledge enhancement among families, communities, and healthcare staff seem relevant.
4. Palliative care not only includes care for suffering but also social. Psychological, and spiritual issues, can only be fulfilled by families, and communities and NOT as much by any hospital/institution.

T-Timely
1. It will take a minimum of 5 years to achieve a decent level of awareness and knowledge among families, community, healthcare staff, and stakeholders.
2. We will assess the level of awareness and knowledge after 1 year, 3 years, and 5 years of submission of the action plan. 

Lack of knowledgeable skilled and motivated health workforce    to deliver palliative care services because provision of palliative care services is multidisciplinary.

1 Deployment of adequate and dedicated trained workforce for the provision of holistic palliative care services at different levels of healthcare. 

2. Build the capacity through of the existing workforce to provide holistic palliative care services through continued in service training 

3. Develop and implement strategies and support systems to prevent burnout among palliative care providers

 4. Develop structures to promote career growth and progression, remuneration and recognition including retention and development of appropriate schemes of service for palliative care providers 

5. Promote task shifting and task sharing for human resources in provision of palliative care services including opioid prescription as per relevant scopes of practice through engagement with relevant regulatory bodies. 

6. Integrate palliative care training into all curricula for health-related courses at diploma, undergraduate and graduate level so that all health workers are trained on palliative care.

 7. Liaise with Ministry of Education to develop curricula and roll out relevant palliative care training programs at diploma and postgraduate level