Dr N Dinat, Z Sithole, J Marston, Dr A Barnard, L Penn-Kekana

Presentation to the Parliamentary Portfolio Committee by Hospice and Palliative care Association of South Africa,Wits Palliative Care and the

Palliative Care Society of South Africa

12th September 2006

Who we are

PCSSA Palliative care Society of

South Africa

University of the Witwatersrand

Translating policy into action

• Palliative care is part of South African Health policy The Patients' Rights

CharterAccess to healthcarev. palliative care that is affordable

and effective in cases of incurable or terminal illness;

GOVERNMENT’S COMPREHENSIVE HIV AND AIDS CARE, TREATMENT AND MANAGEMENT PLAN

Strategic Plan 2006/7-2008/9 – Health Department

Why are we here

• Government has recognized that pain and symptom relief is a human/patient’s right

• Traditionally palliative care has been provided by NGOs and FBO

• Access to pain and symptom relief remains a problem to many South Africans

• Need to work to strengthen palliative care in the public sector and partnerships

• An oversight hearing will raise profile, identify gaps, explore challenges of implementing government policy and support development of new services

Many illnesses are accompanied by huge pain and suffering

• Gauteng suffered 95 186 deaths in 2002 (Stats SA)

– 38% from AIDS and cancers– Significant number from other chronic illnesses

• Almost all would have attempted access to a hospital several times – Inpatient mortality about 20%

• Nurses and doctors are traumatized since they do not know what to do

But much of pain and suffering with AIDS and cancers could be alleviated using simple approach

WHO expert cmmtee on cancer pain and active supportive care 1996

• In most parts of the world, the majority of cancer patients present with advanced disease. For them the only realistic treatment option is pain relief and palliative care”

• Freedom from pain should be seen as a right on every cancer patient and access to pain therapy a measure of respect for this right

Sr Zodwa Sithole

A primary health care nurse and a palliative care nurse-clinician from

Kwa-Zulu Natal

palliative drugs

• All on the essential medicines list

• In SA 8 drugs (all on the EDL) can do this

(cancers and AIDS)– In the UK 4 drugs shown to ameliorate most

pains and symptoms

• Nurse-clinician prescribing

What is Palliative Care?• When the doctors say

there is nothing more that can be done

• ‘caring for those we cannot cure’

• Adds life to days, not days to life

• Provides pain relief and symptom alleviation from diagnosis until death

• Provides bereavement support

PHYSICAL EMOTIONAL

SOCIAL SPIRITUAL

What palliative care is not

• Synonymous with home-based care

• Care without drugs or health care workers

• Terminal care provided only by hospices

• A luxury for the rich, that is unaffordable

• A vertical programme• A “nice to have”• Step-down care

Why we cannot afford not to have palliative care

• Children and the elderly are left unsupported to care for dying family in pain

• Health care workers and home based carers are traumatised by watching on helplessly

• Lack of palliative care increases the feminisation of poverty

Why We Can Afford To Provide Palliative Care In The Public Sector

• Direct costs– Less than a hospital

• R1600 vs R300

– BUT rational visits with strict referral criteria

– Nurse-clinicians utilized effectively diagnosis, treatment, and referral

• Savings– Save multiple

unnecessary admissions into tertiary centres

– Will make HBC programmes more effective

– Integration will reduce duplication in management

Palliative care effectively mitigates suffering

• Studies have shown a gap in access to effective pain and symptom relief

• Barriers include lack of knowledge and misconceptions, cumbersome regulations of some drugs, not ‘mainstream’ medicine

Challenges in providing palliative care in South Africa

• The Public and the providers’ knowledge about palliative care– Myths about morphine and pain relief in

cancer and other life-threatening illnesses– Misconception that palliative care is about

euthanasia

Enhances Home Based Care Programmes

• Policy states palliative care should be available

• This model does not replace HBC but supports them– HBC needs palliative services to do their work

more effectively. – Our Palliative services are enhanced by

working with HBC groups in the Soweto Care Givers Network, and region 6 & 10 meetings

Palliative care supports patients and their families

• Relief from pain and alleviation of suffering is a basic human right

• Palliative care is affordable, do-able

• Allows people to live until they die and to die in dignity

WHO ModelEducation

Of the public

Of health care professionals (doctors, nurses, pharmacists)

Of others (health care policy-makers, administrators, drug regulators

National or state policy emphasising the need to alleviatechronic cancer pain

Government Policy

Drug availability

Changes in health care regulations/ legislation to improve drug availability (especially of opioids)

Improvements in prescribing, distributing, dispensing and administration of drugs

An interview with a family member who received palliative

care

Palliative care services at the Chris Hani Baragwanath Hospital

SowetoDr Natalya Dinat

Equity – by public sector provision

Mr Martin passed on 5 days after this visit

• Our patient for 5 months. We helped with breathlessness; choking feeling; pains which needed morphine; fits; incontinence; family issues and feeding; ensuring that the family were able to cope at home, so preventing more admissions to CHB, and probable death at CHB

Collaboration with the DoSD

• Palliative team work with DoSD to distribute food parcels to patients who require it

• Do the ‘means test”• Provide distribution

points• Keep records

Palliative care and children

Joan Marston from St Nicholas Childrens’ Hospice, Bloemfontein

A vision for palliative care

• Quality palliative care will be accessible to everybody

• Less suffering using local innovations, EDL, community partnerships

• All HCW will confidently use a palliative approach

• Multidisciplinary palliative team in each DHS • Patient’s rights realised• Patients’ and their families’ suffering mitigated

Contact us

Loveday Penn KekanaEmail: loveday.penn-kekana@nhls.ac.zaDr Natalya DinatTel: 011 933 4031Fax: 011 933 3482Email: dinatn@chse.wits.ac.zaZodwa SitholeEmail: advocacy@palliativecare.co.za