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Challenges for Care at

Home

Dr Lim Zee Nee MBChB(UK) MRCP(UK)

Palliative Care Physician, HospisMalaysia

10th Malaysian Hospice Congress

2ndJune 2012 Johor

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Aims

Introduction

Palliative home care and its challenges

Case Study

Approaches to improve palliative care at home

Conclusion

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Home

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In the 19th century

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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%

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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 withlife-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.

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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)

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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

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Challenges in providing

Palliative Care at Home - 2 Out of hours coverage

Logistics

Lack of social support, caregiver support, equipment

Access to drugs

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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

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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

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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

h ll

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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

h ll

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Approaches to Better Palliative

Home Care The Gold

Standards Framework 7 Gold Standards of Community Palliative Care

1. Communication

2. Coordination3. Control of symptoms

4. Continuity of care

5. Continued learning

6. Carer support7. Care of the dying

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

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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