Developing normative elements: Palliative Care

1. Developing normative elements:Palliative Care Rose Gahire, NSINDAGIZA, GAROP webinar, January 2019

2. Need for Palliative Care services globally • Need for Palliative care globally • 1. Currently 40 million people worldwide could benefit from PC • 2. Less than 14% receive it • 3. 78% of those in need of PC at the end of life are in MLICs • 4. Of these 54.6M death in 2011 of 66% of those were due to NCDs • 5. PC could improve the quality of life of life annually worldwide • Source: World Health Assembly 2014

3. Why need of Palliative care in older people • The changing epidemiology • 1.As populations age, the pattern of diseases that people suffer and die from also changes. • 2. Increasingly, more people die as a result of serious chronic diseases such as heart disease, cerebrovascular disease (including stroke), respiratory disease and cancer. • 3. It can be difficult to diagnose with certainty any one disease as the main cause of death, as many older people suffer from sever- al conditions together that might all contribute to death. • 4. Older people are more commonly affected by multiple medical problems of varying severity. • 5. The cumulative effect of these may be much greater than any individual disease, and typically lead to greater impairment and needs for care. • 6. Older people are at greater risk of adverse drug reactions and of iatrogenic illness. • 7. Minor problems may have a greater cumulative psychological impact in older people. • 8. Problems of acute illness may be super- imposed on physical or mental impairment, economic hardship and social isolation.

4. What has been done in the area for Palliative Care in Rwanda What has been done in the area of PC in Rwanda 1. 2011, a stand- alone PC was which approved which has five priority areas • Integrating PC into the health system • Public awareness • Improving accessibility, affordability and availability of PC medications • Development of Human resource • Reinforcing operation research 2. LAW 2012 GOVERNING NARCOTIC DRUGS, PSYCHOTROPIC SUBSTANCES AND PRECURSORS IN RWANDA article 17 authorises • Medical practitioner authorized to exercise; • Dentist authorized to exercise dental art; • Veterinary doctor with authorization; • Qualified midwife or nurse authorized to exercise the profession and within the limits established by the Minister in charge of health.

5. Gaps in the implementation of PC policy Gaps in the implementation of PC policy 1. There is no Ministerial law how to implementation this policy 2. There is no government budget for the implementation 3. Long term care service is not incorporate 4. The policy is generic ( Adult and Children) and does not specifically say anything on Older people 5. Nurses and Pharmacist not yet allowed to prescribe PC medication

6. Older people’s right to palliative care information • Affirmation • 1. Older persons should have the right to adequate knowledge and awareness on Palliative Care. •  Scope of the right • 1.1 Older persons have right to understand of what Palliative care is and how it enhances life. Palliative care is only seen as only valuable at the end of life and yet the benefits are vital from the point of diagnosis. • 1.2 Older persons have the right to know how they can access palliative care services. • 1.3 Older persons have the right to designate their care givers to get information on the availability of Palliative care services at all levels of health system. • 1.4 Older persons have the right to participate in the design, development and implementation of Palliative Policy. • 1.5 Older person should have right to discuss about the future, as this is vital if the patients are to be permitted the dignity of deciding how to spend their remaining time. • 1.6 Older people have right to disclosure, diagnosis, prognosis, transition to PC and the holistic care plan.

7. Older people’s right to palliative care information • State obligations • 1. State Parties shall take appropriate and effective measures: • 1.1 To ensure there is appropriate legal frame-work or mechanism in place for effective and timely dissemination of palliative care Policy. • 1.2 To ensure effective access to information so that older persons can access Palliative as early , from time of diagnosis of a life- threatening illness or serious chronic illness to prevent unnecessary delay. • 1.3 To ensure appropriate strategies for involvement of older person in the design, development and implementation of Palliative care policy

8. Older people have right to available, accessible and affordable Palliative care services • Affirmation • 2. Older people should have the right to quality palliative care services which are accessible, available and affordable. • Scope of the right • 2.1 older people should have right to palliative care which is free from discrimination and in a dignified manner • 2.2 Older people have right to health service, health schemes which are not discriminatory based on their age. • 2.3 Older people have a right to access palliative care medicine which is crucial to high quality and effective pain and symptom control

9. Older people have right to available, accessible and affordable Palliative care services • State obligations • 2. State Parties shall take appropriate and effective measures: • 2.1. Ensure that PC is integrated at all levels of primary health care • 2.2. Strengthen capacity of health care professionals in gerontology, geriatrics and palliative care • 2.3. States are obliged to respect the right to health by refraining from denying or limiting equal access for older people to Palliative care health services • 2.4. State has binding legal human rights obligations, of which it must absolutely ensure that everyone is free from unnecessary suffering. Ensure access to pain medication • 2.5 State must ensure that adequate preventive, curative, and palliative health care is of sufficient quality to everyone who needs it • 2.6 State should be including Palliative health care budget in their planning