Choice and control: ensuring patient involvement

Dr Simone AliConsultant in Palliative MedicineSouth Downs Health NHS Trust /

The Martlets Hospice

Choice and Control

• What is Choice?– “option; alternative; selection; preference;

variety; abundance”

• What is Control?– “manage; organise; be in charge of; have

power over; be in command of; direct; rule”

• Is Choice/Control a good thing? Always?

Hobson’s Choice?

Referrals to MCT by Diagnosis (April 2007- March 2008) n=716

Cancer 79%

Systems failure14%

Progressiveneurological 3%

Other non-cancer4%

529

65

133

166

220

0

50

100

150

200

250

Actual Placeof Death 2007-8

(n=618)

Other 1%

Not known 5%

Care Home10%

Hospital 21%

Home 27%

Hospice 36%

Concordance with recorded Preferred Place of Care(April 2007-March 2008)

12%

19%

69%

Achieved

Unknown

NotAchieved

Concordance with recorded Preferred Place of Care for Non-

Cancer Referrals (2007-8)

83%

7%10% Achieved

Unknown

NotAchieved

Initiatives which have helped to enhance choice for dying patients in

Brighton and Hove

• Gold Standards Framework (GSF) for primary health care teams and some nursing homes

• Preferred Place of Care (PPC)• Liverpool Care Pathway (LCP) for the dying

patient used and audited by all District Nursing Teams

• Verification of Expected Death by District Nurses• Allow a Natural Death / Do Not Attempt

Resuscitation (DNAR) Policy

DNAR…do patients have a choice?

• Competent patients who don’t want CPR– Yes

• Competent patients who do want CPR– If futile, then no– No obligation to discuss with patient

• Incompetent patients who can’t tell us– Ascertain previous wishes of patient– Ascertain whether futile

Initiatives which have helped to enhance choice for dying patients in

Brighton and Hove

• Gold Standards Framework (GSF) for primary health care teams and some nursing homes

• Preferred Place of Care (PPC)• Liverpool Care Pathway (LCP) for the dying

patient used and audited by all District Nursing Teams

• Verification of Expected Death by District Nurses• Allow a Natural Death / Do Not Attempt

Resuscitation (DNAR) Policy• Statement of Patient’s Wishes (“Pink Sheet”)

STATEMENT OF PATIENT’S WISHES

Clinical Issue Details/DecisionAdvance Decision,Lasting Power of Attorney (LPA),Enduring Power of Attorney (EPA)

If any in place, when last updated and where are copies held?

Staff Signature Date

Cardiopulmonary Resuscitation (CPR)

If patient does not wish to be for CPR, has GP / Consultant signed DNAR form?

Staff Signature Date

Artificial Feeding & Hydration

Staff Signature DateAssisted Ventilation

Staff Signature DateTransfusion Of Blood Products

Staff Signature DateOther Scenarios Requiring Hospital Admission

Staff Signature DatePreferred Place of Care

Staff Signature Date

Help the Hospices and The St James’s Place Foundation Awards Programme:

“Care Beyond Cancer”

• “A patient led clinical directive proforma: development and dissemination”

• Supported by Brighton and Hove PCT and Out-Of-Hours (OOH) team

• Regular progress reports and audit

Impact of Pink Sheet

• Reduction in inappropriate hospital admissions

• Reduction in unwanted clinical interventions

• Better communication between patient, carers and professionals

• Especially helpful out of hours and when patient unable to express wishes

• PPC achieved for more patients