Bridging the Gap between Palliative care and Rare Diseases
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I was asked to talk at the ICPCN 2018 conference on palliative care within rare diseases. This talk discusses palliative care in "bite size chunks" which are achievable, as well as why I think that Rare Diseases are not necessarily getting all we should be.
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- 1. Bridging the gap in palliative care in the rare disease community
- 2. What did I think about palliative care?
- 3. What SHOULD it FEEL like?
- 4. The WHO Definition Palliative care is an approach 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…
- 5. Approach: a way of dealing with a situation or problem Improves: makes better/ increases Qualities: standards And: to be taken jointly Prevention: to stop something Relief: the alleviation of pain and discomfort
- 6. Palliative care is an approach 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 = Palliative care is a way of dealing with a situation, that increases / betters the standards of life of patients jointly with their families, through stopping of (suffering) and the alleviation of pain and discomfort
- 8. Barriers to accessing appropriate care… •Bias based on culture/race/age •Fear •Lack of awareness •Myths / Ignorance •Available testing •Doctors knowledge & awareness •Lack of referral systems •Financial constraints •Logistic limitations •Doctors knowledge & awareness •Lack of referral systems •Economic climate •Funding decisions in state/ private •Lack of treatment options •Unregistered medications •Clinical Trials •Insufficient Capacity •Pioneering/new area •Economic •Fear •Transport •Compliance •Patient Education •Social
- 9. Symptom phase - Vague, mimic common issues - Can be aggressive, or can take years to manifest into something which requires attention - Symptoms are generally not life threatening = only accumulate Into overall condition which then becomes life threatening (if focusing on symptoms alone – doesn’t make strong case)
- 10. Diagnostic phase - 7,2 Years = stagnated care - Lack of diagnostic facilities – Expensive, lack of capacity/ equipment - Overseas testing? Confusion on what available in SA - No confirmed diagnosis – no ICD code – no funding - No diagnosis?
- 11. Acute phase - Cost of treatment – funding struggle - Treatment not available locally - Clinical trials – strictly regulated - Limited doctors knowledge on disease - 95% of RD have no commercial treatment?
- 12. LIVING BEYONG phase = the dream! - Increased life expectancy - Reduced mortality - No longer “acutely” ill - Emotional Toll
- 13. Emotional Impact - How long is the race? - Siblings? - High Divorce rate - Financial constraints - Depression / Anxiety