GUIDING QUESTIONS FOR THE NORMATIVE FRAMEWORK OF THE ISSUES EXAMINED AT THE 
IX SESSION OF THE OPEN-ENDED WORKING GROUP ON AGEING 
Long-term and Palliative Care:

National legal framework 
1) When Pakistan was created in 1947, the newly created state continued with the Lunacy Act of 1912, which had been in place in British India. The focus of the act was more on detention than on treatment and with advances in treatment, especially the introduction of psychotropic medication, updated legislation was needed but it was not until 2001 that the Lunacy Act of 1912 was replaced by the Mental Health Ordinance of 2001. Following the 18th amendment in the constitution of Pakistan, health was made a provincial subject rather than a federal one. On 8 April 2010, the Federal Mental Health Authority was dissolved and responsibilities were devolved to the provinces, and it became their task to pass appropriate mental health legislation through their respective assemblies.Only the provinces of Sindh and Punjab have a mental health act in place and there is an urgent need for similar legislative frameworks in other provinces to protect the rights of those with mental illness.
Pakistan's mental health policy was last revised in 2003.The disaster/emergency preparedness plan for mental health was last revised in 2006.There is no policy that protects the rights of people who get convicted but are mentally ill. 
 most of the developing countries, public health care systems are beleaguered by disorganization and a lack of provider responsiveness to the needs of consumers. Meanwhile, the private sector, by a long way, has dominated the state's system of health provision in almost all developing countries.1,2 'Contracting out' of primary health care service, therefore, would encompass those activities/services for which the state or local health department has reached a formal decision to withdraw from or contract out for provision of a public health service, in whole or in part, and a non-governmental entity has taken over responsibility for provision of that service. This approach must ensure delivery of comprehensive public health services in an efficient, effective, superior and fair manner.3 Contracting of primary health care (PHC) services to non-governmental organizations (NGOs), in recent years, has been experimented as an approach to ensure delivery of comprehensive public health services in an efficient, effective, superior and fair manner and has generally been found successful.
2) Normative elements:

Palliative care is considered an integral component of cancer care and WHO has urged countries to develop policies geared towards ensuring adequate drug availability, education at a national level and implementation of palliative care services at all levels [1,2]. However, in many developing countries, oncology services are quite neglected and the facilities available are not sufficient to take care of the needs of the population.
The key to managing palliative care includes provision of accessibility to all those who require palliative care, early diagnosis and treatment, provision of holistic care for the patients as well as their families to improve quality of life, and availability of resources required to provide end of life care throughout the country 
Pakistan is located in Southern Asia bordering the Arabian Sea. It is situated between India on the east, Iran and Afghanistan on the west and China in the north. It is the 6th most populous country with an estimated population of 185 million with an annual population growth rate of 1.46% [6]. The age structure observed is that of a developing country with the 0-14 years constituting 32.65% of the population. The 15-64 years group forms the bulk of the population, i.e. 63% and the 65+ years comprising 4.35% of the population [7]. Pakistan is a low- to middle-income county ranking 146 out of 167 countries in UN’s Human Development Index Despite a large cancer burden, in the presences of competing health issues, and an overburdened and inefficient health and development systems, palliative care remains a relatively unknown and low priority health agenda item. This is further confirmed by a dearth of evidencebased or programmatic research in the area of palliative care.
For the successful implementation of palliative care into health care system, there needs to be an emphasis on education, training and research. In Pakistan, facilities established to provide specialized healthcare needs like oncology care are not accessible to the majority since they are situated in urban cities and are expensive private sector facilities. Treatment is therefore beyond the reach of the majority .
There is no independent legislation on occupational safety and health issues in Pakistan. The main law, which governs these issues, is the Chapter 3 of Factories Act, 1934. All the provinces, under this act, have devised Factories Rules. Khyber Pakhtunkhwa and Sindh have enacted the Factories legislation in 2013 and 2016 respectively. The Hazardous Occupations Rules, 1963 under the authority of Factories Act is another relevant legislation. These rules not only specify some hazardous occupations (working with Lead; Aerated Waters; Rubber; Chromium; Cellulose Solution Spraying; Sand Blasting; Sodium and Potassium-Bichromates; Petrol Gas Generating Plant) but also authorize the Chief Inspector of Factories to declare any other process as hazardous.
The other related laws are:

Dock Laborers Act, 1934
Mines Act, 1923
Workmen Compensation Act, 1923
Khyber Pakhtunkhwa Workers’ Compensation Act, 2013

Sindh Workers Compensation Act, 2016

Provincial Employees Social Security Ordinance, 1965
The Sindh Employees Social Security Act, 2016

West Pakistan Shops and Establishments Ordinance, 1969
The Khyber Pakhtunkhwa Shops and Establishments Act 2015
The Sindh Shops and Commercial Establishment Act 2015
Boilers and Pressure Vessels Ordinance, 2002
Pakistan Environmental Protection Act, 1997 (Hazardous Substance Rules, 2003)

The Agricultural Pesticides Ordinance, 1971 (The Agricultural Pesticide Rules, 1973)

West Pakistan Labour Camps Rules, 1960
3)3. How should long-term care and palliative care be legally defined?
Long-term care insurance can cover home care, assisted living, adult daycare, respite care, hospice care, nursing home, Alzheimer's facilities, and home modification to accommodate disabilities. ... Premiums paid on a long-term care insurance product may be eligible for an income tax deduction
Following the 18th amendment in the constitution of Pakistan, health was made a provincial subject rather than a federal one. On 8 April 2010, the Federal Mental Health Authority was dissolved and responsibilities were devolved to the provinces, and it became their task to pass appropriate mental health legislation through their respective assemblies.Only the provinces of Sindh and Punjab have a mental health act in place and there is an urgent need for similar legislative frameworks in other provinces to protect the rights of those with mental illness,
4) Implementation ;
Pakistan is a developing country of South East Asia, with all the incumbent difficulties currently being faced by the region. Insufficient public healthcare facilities, poorly regulated private health sector, low budgetary allocation for health, improper priority setting while allocating limited resources, have resulted essentially in an absence of palliative care from the healthcare scene. Almost 90% of healthcare expenditure is out of the patient's pocket with more than 45% of population living below the poverty line. All these factors have a collective potential to translate into an end-of-life care disaster as a large percentage of population is suffering from chronic debilitating/terminal diseases. So far, such a disaster has not materialised, the reason being a family based culture emphasising the care of the sick and old at home, supported by religious teachings. This culture is not limited to Pakistan but subsists in the entire sub-continent, where looking after the sick/elderly at home is considered to be the duty of the younger generation. With effects of globalisation, more and more older people are living alone and an increasing need for palliative care is being realised. However, there does not seem to be any plan on the part of the public or private sectors to initiate palliative care services. This paper seeks to trace the social and cultural perspectives in Pakistan with regards to accessing palliative care in the context of healthcare facilities available.
5 )The United Nations Declaration on the Rights of Indigenous Peoples adopted by the General Assembly on 13 September 2007. The Declaration affirms the basic rights of indigenous peoples in a number of areas of special concern for these peoples, under the framework of the general principle or right to self-determination, including the right to equality and non-discrimination; the right to cultural integrity; the rights over lands, territories, and natural resources; the right to self-government and autonomy; the right to free, prior, and informed consent, and others.
Equality and non-discrimination 
6) End of Life Care includes Palliative Care. If you have an illness that can't be cured, palliative care makes you as comfortable as possible, by managing your pain and other distressing symptoms. It also involves psychological, social and spiritual support for you and your family or carersPalliative care is explicitly recognised under the human right to health. It should be provided through person-centred and integrated health services that pay special attention to the specific needs and preferences of individuals.

Palliative care is required for a wide range of diseases. The majority of adults in need of palliative care have chronic diseases such as cardiovascular diseases (38.5%), cancer (34%), chronic respiratory diseases (10.3%), AIDS (5.7%) and diabetes (4.6%). Many other conditions may require palliative care, including kidney failure, chronic liver disease, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, neurological disease, dementia, congenital anomalies and drug-resistant tuberculosis.Each year an estimated 40 million people are in need of palliative care, 78% of whom live in low- and middle-income countries. For children, 98% of those needing palliative care live in low- and middle-income countries with almost half of them living in Africa.
Worldwide, a number of significant barriers must be overcome to address the unmet need for palliative care:
national health policies and systems do not often include palliative care at all
training on palliative care for health professionals is often limited or non-existent
population access to opioid pain relief is inadequate and fails to meet international conventions on access to essential medicines.
7)Participation  
Pakistan is a developing country of South East Asia, with all the incumbent difficulties currently being faced by the region. Insufficient public healthcare facilities, poorly regulated private health sector, low budgetary allocation for health, improper priority setting while allocating limited resources, have resulted essentially in an absence of palliative care from the healthcare scene. Almost 90% of healthcare expenditure is out of the patient's pocket with more than 45% of population living below the poverty line. All these factors have a collective potential to translate into an end-of-life care disaster as a large percentage of population is suffering from chronic debilitating/terminal diseases. So far, such a disaster has not materialised, the reason being a family based culture emphasising the care of the sick and old at home, supported by religious teachings. This culture is not limited to Pakistan but subsists in the entire sub-continent, where looking after the sick/elderly at home is considered to be the duty of the younger generation. With effects of globalisation, more and more older people are living alone and an increasing need for palliative care is being realised. However, there does not seem to be any plan on the part of the public or private sectors to initiate palliative care services. This paper seeks to trace the social and cultural perspectives in Pakistan with regards to accessing palliative care in the context of healthcare facilities available.
8)Accountability;
In Pakistan, the concept of palliative care is like a new-born baby who needs a lot of attention. Lynch, Connor & Clark , identified that the ratio of palliative services in Pakistan in relation to population is 1:90 million. Furthermore, the burden of chronic illness in Pakistan is very high. According to the Global burden of diseases (2010), it is estimated that by 2025 there will be 3.9 million deaths in people aged between 30 to 69 years in Pakistan due to NCDs including cardiovascular diseases, respiratory diseases, cancer, diabetes mellitus and mental health illnesses. Furthermore, lack of resources, lack of qualified personnel, and lack of awareness are other challenges that delay the growth of palliative care in Pakistan.