01 OLIVER DAVID Zagreb oct 2016

(1)

Palliative care- who, where, when?

The UK experience

(2)

Palliative care

An approach that improves the quality of life of patients and their families facing problems

Associated with life-threatening illness, through the prevention and relief of suffering, early

identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual

(3)

Palliative care aims

•

Provides relief from pain and other distressing symptoms

•

Affirms life and regards dying as a normal process

•

Intends neither to hasten or postpone death

(4)

Palliative care aims

•

Offers a support system to help

patients live as actively as possible until death

•

Offers a support system to help the family cope during the patient’s

illness and in their bereavement

(5)

Palliative care aims

•

Will enhance quality of life, and may also positively influence the course of illness

•

Is applicable early in the course of illness, in conjunction with other

therapies that are to prolong life, such as chemotherapy or radiation therapy, and includes those investigations to better understand and manage

(6)

Developments in UK

•

19th century care of dying in institutions

•

Early 20th century increasing awareness of

needs of dying patients

•

1967 St Christopher’s Hospice opens in London by Cicely Saunders

Care and symptom control Research and teaching

•

1969 Home care starts

•

1975 Day hospice

(7)

Who?

•

Cancer

•

Neurological disease

 _{ALS MS Parkinson’s}  Dementia

•

Respiratory disease

•

Heart failure

•

Kidney disease

(8)

Patient and family care

•

Whole patient

 Physical

 Psychological

 Social

 Spiritual

•

Patient in the context of the family

•

Family care

(9)

Aims of care

•

Assess and review

•

Reduce unnecessary medication and interventions

•

Ensure appropriate medication available

•

Symptom management essential

•

Support family and carers

(10)

Where?

•

Where the patient

 Is

 Wants to be

 Is able to be

•

Home

•

Hospital

•

Hospice / Specialist palliative care unit

(11)

Overlap

•

Specialist palliative care

 People with complex needs

 Multidisciplinary team with extra training and experience, working in this area

•

Supportive care

 Support with symptoms / psychosocial issues

•

Generic palliative care

 Good care provided by any professional

(12)

Specialist palliative care - community care

•

Care of patients and families at home

•

Collaboration with primary care

 _{General Practitioners}

 Community nursing services

 Social carers

•

Symptom control

(13)

Specialist palliative care – in patient care

• In - patient care / hospice

• _{Symptom management} • Difficult symptoms

• Psychosocial issues

• _{Respite care}

• For patient, helping to be active again

• For family

(14)

Specialist palliative care – day care

Day care

Socialisation

Respite for carers Physiotherapy

(15)

Specialist palliative care - hospital

• _{Hospital care}

• Assessment

• _{Multidisciplinary team}

• Support of patient/family/staff

• _{Bereavement support}

(16)

Specialist palliative care in UK

•

220 units

 3,156 beds, 58,000 admissions

 18% cancer deaths

•

361 community services

 155,000 patients

 70% of cancer patients seen

•

263 day hospices

(17)

When?

•

When there are needs?

 Physical

 Psychosocial

•

In last 6-12 months of life?

•

At what level?

 Basic care needs

• For all patients

 Palliative care / supportive care

• Supporting patients

 Specialist palliative care

• Complex needs

(18)

(19)

Assessment

•

The surprise question

 Would you be surprised if this person died in next year?

•

Use of assessment

 SPICT

(20)

Supportive and Palliative Care Indicators Tool

Look for general indicators of deteriorating health.

•

Unplanned hospital admissions.

•

Performance status is poor or deteriorating,

•

Dependent on others for care due to physical and/or mental health problems.

•

More support for the person’s carer is needed.

•

Significant weight loss over the past 3-6 months, and/ or a low body mass index.

•

Persistent symptoms despite optimal treatment of underlying condition(s).

(21)

SPICT

•

Cancer

 Functional ability deteriorating due to progressive cancer.

 _{Too frail for cancer treatment or treatment is}

for symptom control

•

Respiratory disease

 _{Severe chronic lung disease with:}

breathlessness at rest or on minimal exertion between exacerbations.

 _{Needs long term oxygen therapy.}

 _{Has needed ventilation for respiratory}

(22)

SPICT

•

Dementia / frailty

 Unable to dress, walk or eat without

help.

 Eating and drinking less; swallowing

difficulties.

 Urinary and faecal incontinence.

 No longer able to communicate using

verbal language; little social interaction.

 Fractured femur; multiple falls.

 Recurrent febrile episodes or

(23)

SPICT

•

Neurological disease

 Progressive deterioration in

physical and/or cognitive function despite optimal therapy.

 Speech problems with increasing difficulty communicating and/or

progressive swallowing difficulties.

(24)

Marie Curie Triggers

•

Developed as differing access to palliative care

 Deaths in England and Wales 29% cancer

 Hospice care 88% cancer

•

Aim to

 Improve understanding of palliative care

 Increase access for people when it is appropriate

 Help professionals identify the later stages of diseases

(25)

Marie Curie Triggers

•

Complex / persistent symptoms

•

High level of hospital use – unplanned admission

•

Having more than one condition

•

Reduced eating when cognitively impaired

•

New interventions – gastrostomy / ventilation

•

At diagnosis if poor prognosis – ALS

(26)

Early integration of care

•

Palliative care should be considered early in the disease trajectory,

depending on the underlying diagnosis

Temel JS, Greer JA, Muzikansky et al N Eng J Med 2010; 19: 733-742.

(27)

Multidisciplinary team

•

Assessment and care should be provided by multidisciplinary

approach

 At least three professions

• Physician

• Nurse

• _{Social Worker}

(28)

Communication

•

Communication should be

 Open

 Set goals and therapy options

 Use structured models, SPIKES

•

Early advance care planning encouraged

 Especially if expectation of • Impaired communication • Cognitive deterioration

(29)

Carer support

•

Needs of carers assessed regularly

•

Support of carers – before and after death

•

Professionals should reduce emotional exhaustion and burnout by

 _Education  _Support

 _Supervision

Gelfman LP et alJ Pain Symptom Manage 2008; 36: 22-8.

(30)

End of life care

•

Continued and repeated discussion

 _{As continual changes}

• Physical

• Cognitive

• Preferences

•

Encouragement of open discussion about dying process

•

Encourage open discussion about the wish for hastened death

(31)

End of life care

•

Recognition of deterioration over last months and weeks important

•

Diagnosis of the start of the dying phase allows appropriate

management

 Interventions

 Medication

 Carer and family support

•

Use of care pathways helpful

(32)

(33)

Conclusions

•

Palliative care may be helpful for patients with

 Advancing disease

 Any diagnosis

•

The specialist services should be involved with the more complex issues

 Symptoms

 Psychosocial

•

Often towards the end of life but may be earlier in the disease progression