PLANNING FOR END OF LIFE CARE: LEGAL AND FINANCIAL ISSUES

1. PLANNING FOR END OF LIFE CARE: LEGAL AND FINANCIAL ISSUES By David Obot(Uganda Reach the Aged Association) UN OEWG, • July 31, 2014 • New York

2. Outline of the presentation • Definitions • Uganda Reach the Aged Association • Situation of Older Persons situation in Uganda • Contextual issues • Legal issues • Financial issues • Conclusion • Recommendations

3. Introduction • Understanding Planning for End of Life Care (Awareness) • Death is eminent, hence the need to plan for it • Currently few take seriously the need to plan for end of life care (developed vs developing countries; rural vs urban; literates vs illiterates) • Various factors explain planning for end of life care practices (head of family, dependants, health conditions, poverty, policy & policy implementation, etc) • Plans for end of life have legal and financial consequences • Concerted efforts are required to promote the planning for end of life care by all at all levels

4. Definitions • “End of Life” defined as "The presence of a chronic disease(s) or symptoms or functional impairments that persist but may also fluctuate…", and symptoms or impairments can lead to death, as a result of the underlying irreversible disease • “Care” are services provided - either formal paid, professional or informal unpaid or volunteer care(National Institutes of Health. National Institutes of Health State-of-the-Science Conference: Statement on Improving End-of-Life Care. 6-8 December 2004. 4 November 2006. See: http://consensus.nih.gov/2004/2004EndOfLifeCareSOS024html.htm)

5. Uganda Reach the Aged Association (URAA) • Formed in 1991 • It is a registered national NGO • Office location: Kireka/Namugongo Road • Affiliate of Help Age International • The structure includes: a) Members General Assembly; b) Board of Directors c) Secretariat • Organisations and Individuals apply for membership annually; • Current membership - 63. • Current Strategic Plan 2012 - 2016;

6. Situation of OPs in Uganda • Population of Older OPs in Uganda is ,304,464 (600,653 m & 703,811 f) (UNHS) 2009/2010 Report); • There is remarkable increase in the number of Older Persons with over 20% growth in consecutive population census figures. • OPs constitute 6% of the population & projected to reach 20% of the total population by 2025. • Majority of OPs live in rural areas where about 85% of the active ones are engaged in crop farming.; • OPs problems include poverty, ill health, food insecurity, malnutrition, poor shelter, gender inequalities and abuse

7. Contextual issues • Chronic disease(s), functional impairments, or irreversible illness and health conditions, demand appropriate care plans and response; the effects have no age discrimination. • Professionals (Counsellors, Nurses) or institutions (hospitals or hospice) provide care for a fee or free. • Terminal periods are associated with discomfort and fluctuating emotions (anger, frustration)

8. Contextual issues (Contd) • Literacy is an important factor in planning for end of life care (UNESCO - Sub-Saharan Africa and in South and West Asia, in 2013, adult literacy rates were below 50% in Benin, Burkina Faso, Chad, Ethiopia, Guinea, Haiti, Liberia, Mali, Niger, Senegal and Sierra Leone) • Living and health conditions (Mental condition, personal attitude, family members views, culture and traditional practices, the community and its environment, government policies and programmes) are important factors in planning for end of life care • Clarity in the plan for end of life care helps overcome legal and financial challenges

9. Legal Issues Access to justice • National laws and regulations, institutional procedures and mechanisms to protect the citizens from infringement on their rights and exploitation   • The legal infrastructure functions Durable power of attorney • Power of attorney for healthcare allows a third party to make healthcare decisions • A durable urable power of attorney for finances allows an authorized person to manage another ones' financial transactions including, paying bills, debt or selling off assets.

10. Legal Issues (Contd) Will • A will details what to be done in case of death, or chronic and long illness. • In the absence of a will the Succession Act is superior. Basic services • Services may be provided at home of the person in need, hospital, hospice, assisted living facility, nursing home, or community or foster care home. Care programmes • Hospice and home care • Standards and guidelines specified, regulated, monitored and compliance enforced.

11. Legal Issues (Contd) Health care advance directives • The wishes of a person for health care can be documented in a "Health Care Advance Directive" (A Living Will, health care surrogate designation, or anatomical gifts). Health insurance • Insurance helps in meeting the costs of specialised care services, medical treatment and legal services.   • Older persons working in groups save against risks. Do not resuscitate orders (DNRO) • The forms are usually obtained from the health care providers upon request, signed by patient, his/her attorney and the doctor.

12. Financial Issues Rationale for financial planning • Enable short, medium and long-term financial situation to be understood, and arrangements for managing them put in place in time. • Helps the survivors who must assume new roles in managing finances, which, hitherto, had been the preserve of the deceased or the permanently impaired person only. Relevant information necessary for financial planning • Specialised knowledge: Services from legal, insurance and financial management specialists. • Documentation: Availability and accuracy of the records of transactions. • Inventory and Stocktaking: • Power of attorney of financial matters: • Will:

13. Financial Issues (Contd) Estates • Estate planning protects the interests of minors or children with special needs, spouse, where properties owned are in different locations and jurisdiction, special artworks, business shares and own business. Health insurance • Health insurance helps meet end of life care costs according to each policy. Taxes • Income tax and tax returns, & filing tax return after death Pension and gratuity • Pension and gratuity form part of the financial resources of the contributors

14. Financial Issues (Contd) Actions after death of a principal • Delay major financial decisions following the death of a loved one. Social protection • Social protection is being encouraged in all countries (Uganda's Social Assistance Grants for Empowerment (SAGE). Financial planning for various services • Assisted living in small private homes with few residents to large institutional assisted living facilities. • Active Adult Communities with various. • Independent Living in an exclusive community & participate in communal meals and other activities. • Hospices people living with a life-threatening or terminal illness.

15. Conclusion • MIPAA encourages governments to ensure that: national policies are effective to protect the human rights of older persons, issues of older persons are mainstreamed, policies are in place, sufficient budgets allocated for older persons issues and activities implemented, monitored and evaluated. • Various factors need to be considered in planning for end of life care practices • Plans for end of life have legal and financial consequences • End of life care plans therefore need to respond to various situations including chronic impairments, irreversible disease/health condition that require care, and death. • Arrangements to promote the planning for end of life care is required by all at all levels

16. Recommendations • Enact or review policies to help mainstream end life issues into national programmes and activities • Increase support to medical services by ensuring budget allocations that follow the WHO guidelines (e.g. Doctor/Patient ratios, Nurses/patient ratios, etc) • Develop tools to support lawyers and paralegals to promote making of wills by their clients.

17. Recommendations (Contd) • Improve and support primary healthcare and increase training of community health workers in encouraging communities to plan for end of life care • Support electronic communications between health service seekers and providers to ensure clients in hard to reach rural areas access information about end of life care and other relevant medical information • Increase awareness of planning for end of life care through information dissemination using a mix of media to all citizens at all levels, and in traditional languages.

18. Recommendations (Contd) • Encourage insurance companies to provide more innovative products to support plans for end of life care • Increase training of health professionals to provide effective services for chronic diseases (diabetes, hypertension, cancer, etc) • Undertake research and studies to explore approaches to advance the issues surrounding the end of life from a wide variety of perspectives

19. Recommendations (Contd) • Provide resources and training to enhance health staff skills in talking to patients about planning for end of life care. • Set up mechanisms to monitor progress at all levels in implementing plans for end of life care.

20. THANK YOU