DR. ESTHER NAFULA WEKESA PATIENT’S ATTITUDES TOWARDS ADVANCE CARE PLANNING: COMPARISON OF HIGH INCOME ECONOMIES VERSUS LOW INCOME ECONOMIES DR. ESTHER NAFULA WEKESA MBChB (UNIVERSITY OF NAIROBI), Dip HE PALLIATIVE CARE (OXFORD BROOKES UNIVERSITY) 1

Define advance care planning OBJECTIVES Define advance care planning Compare two studies on advance care planning Discuss future of advance care planning in palliative care

DEFINITION Advance care planning is a process by which patients in conjunction with their health care providers and those close to them establish preferences for medical care at the end of life (Dow et al 2010). An advance directive is a legal document allowing people to choose what they would want in the event that they lack capacity to make their own medical decisions.

DEFINITION CONTD… Includes a living will, durable power of attorney, wills, testaments and do not resuscitate forms. Living will: Written document setting out how one should be cared for in case of an emergency or when incapacitated. Has topics such as resuscitation, desired quality of life and end of life treatments.

DEFINITION CONTD… Durable Power of Attorney: Given to the person one wants to make medical decisions for them in emergency situations. These are decisions not covered in the living will. Do Not Resuscitate Orders (DNR): Specifies which resuscitation measures one is open to.

HIGH INCOME ECONOMY SOCITIES Voltz et al (1998) conducted a survey of 159 patients in palliative care institutions and 93 health care providers experienced in palliative care in 3 countries; USA, Germany and Japan. The aim of the study was to explore the differences in the scope of end of life decisions and attitudes towards advance directives

Care was given either in hospitals, hospices or at home. FINDINGS Patient’s views: Care was given either in hospitals, hospices or at home. Patients had to decide whether to continue or discontinue treatment. Patients had to choose whether to appoint a proxy or sign an advance directive. Issues of coping with death had to be addressed.

Written advance directives were highest among patients from USA (79%). FINDINGS CONTD… Patients in western countries expected their physicians to initiate the discussions on end of life planning. Many advance directives had general information rather than disease specific information. Written advance directives were highest among patients from USA (79%). A few patients in Germany and Japan had given an oral advance directive.

FINDINGS CONTD… 35 % of those not having an advance directive in all 3 countries thought they had inadequate information. More American patients had appointed a proxy and had a durable power of attorney. In Japan, there was no legal provision but informal entrusting of wealth to the family was prevalent.

Health Care Professionals: FINDINGS CONTD… Health Care Professionals: 100% in USA and Germany agreed that advance directives were useful in palliative care. Only 71% agreed to this in Japan. Only 62% of health care professionals felt comfortable helping patients set up an advance directive. Only about 50% agreed that it was useful to appoint a proxy.

CONCLUSIONS FROM THIS STUDY Patients rely heavily on their health care providers for advise even on decisions not related to treatment or illness. This was most pronounced in Germany where 32 % of patients turned to their physicians for non health related advise. It was important that the physician initiates discussions about advance care planning and it was preferred early in the course of disease.

LOW INCOME ECONOMY SOCIETIES Stanford et al (2013) carried out a qualitative study in South Africa. Five focus groups with a total of 51 participants were recruited to determine the perceived relevance of advance care planning. Advance care planning is defined as a dynamic, prospective process that clarifies an individual’s treatment options in the context of his/her beliefs, values and goals for care outcomes especially in he face of serious/terminal illness.

Access to health care is limited by resource constraints. FINDINGS Access to health care is limited by resource constraints. Many patients not able to access basic health care as well as specialized care such as palliative care. Advance care planning is a new concept. Is not being used in practice.

Many participants thought it worthwhile to have conversations on ACP. FINDINGS CONTD… Advance care planning understood to include wills, testaments and living wills. Many participants thought it worthwhile to have conversations on ACP. Advance care planning thought to be useful at it would reduce family conflicts when the patients wishes were very clear.

FINDINGS CONTD… Many thought advance care planning should happen before illness advances. Perceived to be saying the patient is going to die if such discussions are had late in the disease. Health care providers declared the need to develop a relationship with the patient and family first before having such discussions. Main barrier to advance care planning was taboos associated with openly talking about death.

FINDINGS CONTD… In some cultures men still make decisions on behalf of women. Some female patients worried that their wishes would not be honored anyway. There is still need for advocacy to improve awareness and uptake of advance care planning and advance directives. Many patients thought it was good thing to be able to make choices about their care

CONCLUSIONS Patients and health care providers welcome opportunities to discuss their future and plan. Challenges faced by health care providers include culture as well as legislation barriers. Advance care planning should be started as early as possible in the patient’s illness.

FUTURE OF ADVANCE CARE PLANNING Two key aspects need to be looked into: Laws/legislation relating to advance care planning: documentation, terms of validity, rights and responsibilities of durable power of attorney. Culture: What is considered to be a good death? Understand cultural differences and appreciate them. Many cultures share the idea of reducing unnecessary treatment.

REFERENCES Dow, L., Matsuyama, R., Ramakrishnan, V., Kuhn, L., Lamont, E., Lyckholm, L. and Smith, T. (2009) ‘Paradoxes in advance care planning: The complex relationship of oncology patients, their physicians, and advance medical directives’, Journal of clinical oncology : official journal of the American Society of Clinical Oncology., 28(2), pp. 299–304. Stanford, J., Sandberg, D., Gwyther, L. and Harding, R. (2013) ‘Conversations worth having: The perceived relevance of advance care planning among teachers, hospice staff, and pastors in Knysna, South Africa’, Journal of palliative medicine., 16(7), pp. 762–7. Voltz, R., Akabayashi, A., Reese, C., Ohi, G. and Sass, H. (1998) ‘End-of-life decisions and advance directives in palliative care: A cross-cultural survey of patients and health-care professionals’, Journal of pain and symptom management., 16(3), pp. 153–62.

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