1. When Enough is Enough Appropriate care at the end of the lifespan and the importance of engaging the patient and family Anthony Hill Health and Disability Commissioner The 2011 Conference for General Practice 3 September 2011

2. Overview • Vision • Themes

3. Cartwright Vision “[I] advocate a system which will encourage better communication between patient and doctor, allow for structured negotiation and mediation, and raise awareness of patients’ medical, cultural and family needs. The focus of attention must shift from the doctor to the patient.” Judge Cartwright, 1988, page 176

4. A vision for healthcare20 years on “We envisage a culture that is open, transparent, supportive and committed to learning; where doctors, nurses and all healthcare workers treat each other and their patients competently and with respect, where the patient’s interest is always paramount; and where patients and families are fully engaged in their care.” Leape et al 2009

5. Purpose of HDC “To promote and protect the rights of … consumers … ”

6. HDC 2011A Patient Centred System

7. Recurring themes • Learning System • Getting the basics right • Read the notes • Ask the questions • Talk to the patient • Ensure continuity of care • Take responsibility

8. End of Life Care Target areas: • Increase patient knowledge (engagement); • Improve provider education; • Put in place strong hospice and palliative care programs Callahan (2011) 4. Improved co-ordination and co-operation between providers (seamless service)

9. Recent Case Study • 72 year old woman (Mrs A) admitted to a Rest Home with dementia and incontinence • Mrs A was “clearly” in need of hospital level care, had very high needs, and was at high risk of developing a pressure sore • Family concerned Mrs A increasingly poorly nourished, and sacral sore not being adequately managed by Rest Home and GP

10. Recent Case Study • Daughter did not recall being informed by GP that her mother was transitioning into a terminal state • Mrs A cold, clammy, and shaking • GP instructed nursing staff to monitor Mrs A • Family insisted Mrs A be admitted to hospital • At hospital, Mrs A was diagnosed with pneumonia and dehydration • Palliative care provided

11. Recent Case Study HDC Advisor A: “The root cause of this situation seems to have been difficulties in establishing sound communication and agreement between the health providers and the family … This meant that no agreed plan was able to be formulated for the management, whether acute hospitalisation or palliative care, should [Mrs A’s] medical condition deteriorate further. Had a plan been able to be agreed to by all the parties this might have avoided the complaint subsequently made.”

12. Recent Case Study HDC Advisor A: “Had the relationship between [Mrs A’s] daughters and both [the GP] and [the Rest Home] nursing staff been able to be managed better, I think there may have been an acceptance of her deterioration & a palliative care approach could have been adopted when her condition deteriorated.”

13. Recent Case Study HDC Advisor B: “ … it is apparent the family members were not as well informed as they might have been over the significance of [Mrs A’s] deteriorating condition and were not given sufficient opportunity to discuss the desired approach to terminal cares for their mother before her more acute deterioration …”

14. Engaging the patient/family The Code of Health and Disability Services Consumers’ Rights • Right 5: Right to Effective Communication • Right 6: Right to be fully Informed • Right 7: Right to Make an Informed Choice and Give Informed Consent

15. Engaging the patient/family “Pneumonia, febrile episodes and eating problems are frequent complications in patients with advanced dementia, and these complications are associated with high 6-month mortality rates. Distressing symptoms and burdensome interventions are also common among such patients. Patients with health care proxies who have an understanding of the prognosis and the clinical course are likely to receive less aggressive care near the end of life.” Mitchell, S., et al (2009)

16. Engaging the patient/family “There is also by now good evidence that, with solid and candid information about their medical prognosis, a knowledge of their options, and continuing doctor-patient discussion encompassing patients and families, patients are less likely to choose aggressive treatment.” Callahan (2011)

17. NZ Context • The Liverpool Care Pathway for the Dying Patient • Advance Care Planning: A guide for the New Zealand health care workforce (2011)

18. Conclusion “We envisage a culture that is open, transparent, supportive and committed to learning; where doctors, nurses and all healthcare workers treat each other and their patients competently and with respect, where the patient’s interest is always paramount; and where patients and families are fully engaged in their care.” Leape et al 2009

19. www.hdc.org.nz