Palliative care in the United Kingdom: Good progress...

Palliative care in the United Kingdom: Good progress, could do better

K A R E N F O R B E S

P R O F E S S O R I A L T E A C H I N G F E L L O W I N P A L L I A T I V E M E D I C I N E

U N I V E R S I T Y O F B R I S T O L

A N D

U N I V E R S I T Y H O S P I T A L S B R I S T O L N H S T R U S T

U N I T E D K I N G D O M

2015 Quality of Death Index

Ranking palliative care across the world

The Economist Intelligence Unit

Supported by the Lien Foundation

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2015 Quality of Death Index

80 countries ranked

United Kingdom ranked 1st

Canada ranked 11th

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2015 Quality of Death Index: What contributed to these rankings?

Palliative and healthcare environment

Human resources

Affordability of care

Quality of care

Community engagement

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Demand versus supply

Demand analysis based on three indicators

Burden of diseases

Old-age dependency ratio

Speed of ageing of population 2015-2030

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Healthcare spending

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Healthcare spending

Presence and effectiveness of government-led national palliative care strategy

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Healthcare spending


Availability of research-based policy evaluation

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Percentage deaths in hospital


Healthcare spending



Capacity to deliver palliative care services

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Human resources

Availability of specialised palliative care workers

General medical knowledge of palliative care

Certification for palliative care workers

Number of doctors per 1000 palliative-care-related deaths

Number of nurses per 1000 palliative-care-related deaths

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Affordability of care

Availability of public funding for palliative care

Financial burden to patients for available palliative care services

National pension scheme coverage of palliative care services

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Quality of care

Presence of accreditation and monitoring standards for organisations

Availability of opioid painkillers

Presence of Do Not Resuscitate (DNR) policy

Shared decision-making

Use of patient satisfaction surveys

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Quality of care

Accreditation and monitoring standards

Care Quality Commission, General Medical Council, Royal College of Nursing etc inspections

Looking for

Early recognition

End of life care standards

Evidence of education and training

Availability of psychosocial support for patients and families

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Quality of care

Availability of opioid painkillers

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Quality of care

Presence of Do Not Resuscitate (DNR) policy

Shared decision-making

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Public awareness of palliative care

Availability of volunteer workers for palliative care Hospice volunteers

Reception

Inpatient unit

Flowers

Gardening

Shops/coffee shops

Drivers

Bereavement counsellors

Complementary therapists

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Could do better – why and how? 26

Healthcare spending

Out of hours spend

Social care


implementation not uniform


0.7% of cancer research funding

Capacity to deliver palliative care services

Predominantly 0900-1700 delivery

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Commissioning guidance for SPC - per population of 250,000

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2 FTE consultants

2 FTE supporting doctors (trainee or staff grade)

5 FTE community specialist palliative care nurses

20-25 specialist palliative care beds

1.2 nurses per bed

Per 250 bed hospital

1 FTE consultant

1 FTE specialist palliative care nurse

NCPC

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Percentage deaths at home

Countries with a high quality of death

A strong and effectively implemented national palliative care policy framework

High levels of public spending on healthcare services

Extensive palliative care training resources for general and specialised medical workers

Generous subsidies to reduce the financial burden of palliative care on patients

Wide availability of opioid analgesics

Strong public awareness of palliative care

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Charles

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60 years

pT3 N2 V1 R0 M0 carcinoma of the upper rectum

March 2012: Pre-operative FOLFOX chemotherapy with high anterior resection and completion of adjuvant chemotherapy

September 2015: Recurrence base of penis treated with penectomy

January 2016 completed post-op pelvic radiotherapy

May 2016 10 fractions radiotherapy R hip

Charles

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Difficult pain

Reluctant to take medication

Frightened of side effects

Unrealistic expectations

Blocked discussions about the future

Charles

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Married

Wife has breast cancer

Lives in a first floor flat

Family all live at some distance

Neither he or his wife drive

Charles

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Eventually persuaded to take adequate analgesics

Constipation managed

Conversation about the future

But

Offered further palliative radiotherapy to L hip

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Good progress:

Referred to palliative care

Discussed prognosis

Treatment escalation personalised plan

Some advance care planning

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Charles

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Good progress:

Poor prognosis letter to primary care physician

Referral for Continuing Health Care funding

Offer of community support

Offer of buddying

Discussion around doing things he wants to do

• Make a will

• Make a funeral plan

• Start planning for your

future care and support

• Sign up as an organ

donor

• Make sure your loved

ones know your plan

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Charles

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Could do better:

Could have been referred sooner

Second palliative radiotherapy a late trigger

Concerned about out of hours support

If wife’s health deteriorates may not be able to care for him and likely to become confined to flat

Offer of further palliative chemotherapy not offered in context of parallel planning


Public awareness of palliative care

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Palliative care in the United Kingdom: Good progress...

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