The HDC Code and Palliative Care Ron Paterson Health and Disability Commissioner Capital and Coast DHB Education Day, Wellington Friday 24 August 2007

Vision for Palliative Care in New Zealand All people who are dying and their family/whānau who could benefit from palliative care services have timely access to quality palliative care services that are culturally appropriate and are provided in a co-ordinated way.

Issues for Palliative Care in New Zealand  Lack of a palliative care approach  Access to palliative care services  Lack of integration and inflexibility of services  Quality of services and monitoring issues  Workforce and education  Funding of palliative care

Code of Health and Disability Services Consumers’ Rights (1 July 1996)  Particular relevance to advancing illness and end-of-life care  Recognises key consumer rights such as the right to dignity and independence; right to services provided in a manner that optimises the consumer’s quality of life; and the right to open and honest discussion about the consumer’s conditions and options for future care.

Important rights under the Code  Right 4(4) — Every consumer has the right to have services provided in a manner that minimises the potential harm to, and optimises the quality of life of, that consumer.  ‘Optimise the quality of life’ means to take a holistic view of the needs of the consumer in order to achieve the best possible outcome in the circumstances.

Important rights under the Code  Right 3 — Right to Dignity and Independence  Right 5(2)— Right to Effective Communication … an environment that enables both consumer and provider to communicate openly, honestly, and effectively.

Important rights under the Code  Right 6(1) — Right to be Fully Informed … information that a reasonable consumer, in that consumer’s circumstances, would expect to receive, including – (a) an explanation of his or her condition; and (b) an explanation of the options available, including … expected risks, side effects, benefits and costs …  Right 7 — Right to refuse services or withdraw consent...

Care of dying patients and complaints A common source of complaint — 54% of complaints about hospitals in England involve care surrounding a death. Healthcare Commission, UK, February 2007

Case study — hospice care Complaint to HDC  Inadequate pain relief  Poor nursing care  Poor liaison with other providers HDC ‘no breach’ finding; improved linkages between Hospice and DHB Community Health Services resulted from audit following this case. 00HDC11970, 8/12/02

The Lost Art of Healing “Medicine has indulged in a Faustian bargain. A 3000-year tradition, which bonded doctor and patient in a special affinity of trust, is being traded for a new type of relationship. Healing is replaced with treating, caring is supplanted by managing, and the art of listening is taken over by technological procedures. The distressed human being is frequently absent from the transaction.” Bernard Lown, 1998

Empathy “May I never forget that the patient is a fellow creature in pain. May I never consider him merely a vessel of disease.” Maimonides, 12th C philosopher-physician