The document provides an introduction to palliative care and a holistic approach. It defines palliative care according to the WHO as improving quality of life for patients facing life-threatening illness through preventing and relieving suffering. Key principles of palliative care discussed include taking a holistic, patient-centered approach and using a multidisciplinary team. Factors affecting provision of palliative care and strategies for improving services are also outlined.

1. INTRODUCTION TO PALLIATIVE CARE AND HOLISTIC APPROACH. BY WILLY KAMYA Trainer/Lecturer MILDMAY UGANDA

2. Session aim and objectives Aim To enhance participants’ knowledge in palliative care to enable them support holistic care delivery to all who need it in their settings.

3. Objectives By the end of the session, participants should be able to: 1.Define palliative care. 2.State the principles of palliative care 3.Explain the relationship between ART and palliative care 4.Describe the strategies for improving the quality of palliative care services.

4. PALLIATIVE CARE. “ An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” (WHO 2002)

5. Other descriptions of PC 1. “Care beyond cure” 2. “Low technology and high touch” 3. “Adding life to days not just days to Life” 4. Palliative care means never saying “there is nothing we can do” but saying “there is always something we can do”

6. WHY PALLIATIVE CARE? “Health is a fundamental human right indispensable for the exercise of other human rights. Every human being is entitled to the enjoyment of the highest attainable standard of health conducive to living a life of dignity”WHO (2002) This link between human rights and health care is well argued and forms the basis for asserting Palliative care as a universal right.

7. Why Palliative care?…. 1. Provides relief from pain and other distressing symptoms. 2. Affirms life and regards dying as a normal process 3. Integrates the psychological and spiritual aspects of patient care. 4. Offers a support system to help patients live as actively as possible until death 5. Offers a support system to help the family cope during patient’s illness and in their own bereavement.

8. WHY PALLIATIVE CARE?... 6. Uses a team approach to address the needs of patients and their families including bereavement counseling. 7. Will enhance quality of life and may positively influence the course of illness. 8. Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life such as chemotherapy or radiotherapy, and includes those investigations needed to better understand and manage distressing clinical complications.

9. KEY PRINCIPLES UNDERLYING PALLIATIVE CARE 1. Holistic approach: Holistic means the patient is viewed as a person with Physical, psychological, social, spiritual and cultural gifts and needs which are special to that person. Each of these aspects must be taken into account. (Anne Merriman, 2006) The team takes a holistic approach, using the different talents in a team to assist in various aspects of the illness.

11. KEY PRINCIPLES CONT… 2. Patient centered: The patient’s wish is the focus of care 3. Teamwork and partnership 4. Appropriate ethical considerations: - Beneficence : Do good - Non-maleficence: Do no harm - Autonomy : Patient’s right to decide - Justice : Fairness

12. KEY PRINCIPLES CONT…. 5. CONTINUUM OF CARE: Involves a network of resources and services that provide holistic and comprehensive support for the patient and family caregivers. I.e; Home – community agency – lower level health units – hospital.

13. CLOSER LOOK AT PC PRINCIPLES    Respect for patients’ autonomy and choice and provision of adequate access to information; 2. High priority should be given to alleviation as far as possible of pain and distress in psychological and social domains as well as in the physical arena; 3. Create respectful and trusting relationships between the HIV positive person and the caregiver; 4. Support the family, child, and community caregivers in delivering palliative care services;

14. PC Principles continued 5. Integrate and respect patients/family cultural values, beliefs, and customs; and 6. Enhance quality of life throughout the continuum of disease, 7. Offer continuity of care (the patient should be able to continue to be cared for, if so desired, by his/her primary health care provider); 8. Patients should have access to any therapy which may realistically be expected to improve the patient's quality of life, including alternative or non-traditional treatments;

15. PC Principles cont… 9. Respect the physician's professional responsibility to discontinue some treatments when appropriate, with consideration for both patient and family preferences. 10. Use the strength of interdisciplinary team members and resources. 11. Health workers should receive concrete, insightful and culturally sensitive instruction in the optimal care of patients at the end of life.

16. Palliative care for Children Total active care of the child’s body, mind and spirit as well as supporting the family Begins at diagnosis and continues regardless of whether the child receives treatment directed at the disease Covers evaluation and alleviation of a child’s physical, psychological and social distress

17. Palliative care for children Requires a broad multidisciplinary approach that includes family and available community resources, even in resource-limited settings Can be provided in tertiary care facilities, community health centres and even children’s homes

18. Why ART in palliative care? 1.Reduces symptoms and suffering associated with HIV 2. Decrease s viral load and therefore damage to the body immunity 3. Preventing opportunistic infections and tumors with rising CD4 count 4. Improve the quality of life 5. Enhance productivity

19. The role of palliative care in patients on ARVs 1. Provision of ARVs is just a small aspect of Palliative Care offered to HIV positive patients with AIDS 2. Management of lingering side effects such as pain due to peripheral neuropathy 3. Management of HIV-related conditions such as post-herpetic neuralgia which may persist 4. Management of irreversible damage and disability arising out of AIDS before and after starting on ART

20. Characteristics of High-Quality HIV Palliative care Service : 1. Competent, skilled practitioners (effectiveness) 2. Confidential, non-discriminatory, and culturally sensitive care (acceptability) 3. Collaborative and coordinated care (efficiency) 4. Flexible and responsive care (access and relevant to need) 5. Fair access for all clients (Equity).

21. Group work 1. Group 1: What are the factors affecting provision of Palliative care? 2. Group 2: What are some of the strategies that can be utilized to improve palliative care services?

22. FACTORS AFFECTING PROVISION OF PALLIATIVE CARE 1. Transport network 2. Utilities E.g. lack of electricity, clean water… 3. Education: Lack of awareness and inappropriate decision making.(57% of people in Uganda do not access a health worker in heir lives!(Anne Merriman, 2006)) 4. Geography 5. Politics: Health becomes a source of political influence. Preference rather than planned priorities will be implemented to satisfy the majority.

23. FACTORS CONTINUED. 6. Economics: 7. Under developed industrial base: most equipments are just imported. 8. Security 9. Lack of healthcare workers to undertake appropriate service delivery 10. Poverty: when a health centre is available, it is only accessed by those with financial, educational or political influence. Government services for the poorest are usually the least well resourced.

24. Strategies for improving Palliative Care Services 1. Use the holistic approach to care 2. Offer services with equity and responsibility. 3. Respect for Ethical principles; respect patient autonomy, do good, do not harm and be fair. 4. Provide equal access to information, treatment, empowerment and choices for patients and their families.

25. Strategies cont… 5. Use the multidisciplinary team in addressing client and family needs; have regular Interdisciplinary meetings to generate a wider approach in meeting the needs of your clients and their families. 6. Provide care across the illness (Continuum of care). 7. Quality assurance: keep records, monitor progress using indicators, observe high standards of conduct and practice. 8. Evaluate your services regularly.

26. REFERENCES 1. WHO (2002) Definition of Palliative care , World Health Organisation, Geneva. Available: http:www.who.int/cancer/palliative/definition 2. Anne Merriman (2006) Palliative Medicine: Pain and symptom control in cancer and/or AIDS patients in Uganda and other African countries . 4 th edition. Marianum press Limited. Kisubi - Entebe – Uganda 3. James Hamratty, Irene Higginson (1994) Palliative care in terminal illness . 2 nd Edition. Radcliffe Medical Press, Oxford, NewYork.

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