Challenges for Care at Home

Dr Lim Zee Nee MBChB(UK) MRCP(UK) Palliative Care Physician, Hospis Malaysia 10th Malaysian Hospice Congress 2nd June 2012 Johor

Aims
Introduction Palliative home care and its challenges Case Study Approaches to improve palliative care at home Conclusion

Home

In the 19th century

Introduction
Most of the last year of life is spent at home 50-75% of people express wish to be cared for at home when they become terminally ill Percentage of home deaths vary i. Singapore : 30.3% ii. Genoa, Italy : 33% ( to 60.8% if referred to palliative home care) iii. United Kingdom : 26.5%

What is Palliative Home Care ?

Applying the principles and philosophy of palliative care in a patients home WHO Definition: Palliative care is an approach that improves the quality of life of patients and their families facing the problem 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 provides Palliative Care at Home ?

United Kingdom: General practitioners + district nurses (main providers) Community palliative care teams support Malaysia: Non-Governmental Organizations (NGOs) hospice organizations (main providers)

In providing Palliative Care at Home

Clinical competence it is not just tender, loving, care ! Good organization Human dimension of care

Challenges in providing Palliative Care at Home -1

Lack of professional experience and expertise Lack of education and training in palliative medicine Lack of multidisciplinary teams Communication and transfer of information Disease trajectory

Challenges in providing Palliative Care at Home - 2

Out of hours coverage Logistics Lack of social support, caregiver support, equipment Access to drugs

Challenges in providing Palliative Care at Home - 3

Putting cancer pain management regimens into practice at home (Schumacher KL et al 2002): 1. Difficulty in obtaining prescribed medications 2. Difficulty in managing side effects 3. Difficulty in managing multiple symptoms simultaneously 4. Difficulty in coping with and understanding complex information 5. Difficulty accessing information

Challenges in providing Palliative Care at Home - 4

Ethical issues encountered: 1. Confidentiality 2. Conspiracy of silence 3. Withholding or withdrawal of treatment 4. Treating the family rather than the patient 5. Justice 6. Professional issues

Case study
Mr W, battled with pancreatic cancer for 6 months prior to referral to community palliative care Advanced cancer with multiple lymphadenopathies, subcutaneous tissue deposits and bone metastases with recent pathological fracture of the left upper tibia

Approaches to Better Palliative Home Care The Gold Standards Framework

It is a system to improve and optimize the organization and quality of palliative care for patients in the last 6-12 months of life 3 central processes: Identify, Assess, Plan

Approaches to Better Palliative Home Care The Gold Standards Framework

7 Gold Standards of Community Palliative Care 1. Communication 2. Coordination 3. Control of symptoms 4. Continuity of care 5. Continued learning 6. Carer support 7. Care of the dying

http://www.goldstandardsframework.org.uk/

Conclusion
Provision of palliative care at home is an essential component of palliative medicine We need to identify the barriers and work towards overcoming the challenges affecting our community in order to achieve good end of life care at home Non-governmental organizations should work together with the primary health care to improve our current system of palliative home care in Malaysia