Community Palliative Care TeamWhat do we do?

Dr Faith CranfieldMedical Lead, Community Palliative Care Team,

St Francis Hospice

BackgroundHome care service established by daughters of charity in

1989 – in a portacabin in Capuchin Friary in Raheny

1995 – Inpatient unit (19 beds) opened SFH Raheny

Two community teams – East and West

2011 – West team moved to new SFH Blanchardstown

Catchment Area

Who do we see?Cancer patients. All have incurable, progressive disease. Some

continue palliative chemotherapy.

Patients with MND

Patients with other progressive fatal diseases –terminal care patients receive full service. Others receive Palliative Medicine review to advise GP on symptom management, end of life decision-making.

Children with life-limiting illnesses

Location of care Home

Nursing homes

Homeless hostels

Long term psychiatric hospitals

Sheltered accommodation

Team membersNurses 14 WTE CNS, including 1 WTE Management (0.5 East

CNM, 0.5 West CNM)

Medical director ¾ WTE

2 Registrars

2 Full-time Chaplains

2 WTE Social workers

Activity 2012New referrals: 974. New patients taken on: 702.

Referral source: GP-204Beaumont-261Mater-228 James Connolly-39Other 260

Nursing visits 8557, Medical visits 693

Deaths 701. Home-323, St Francis Hospice -626, other -390

What The CPC Team Can Offer

Specialist palliative care to patients

Specialist palliative advice on patient management to professionals (GPs, nursing home staff)

Support for patient’s family and professional carers

24 hour availability of telephone advice

Working hoursMon- Fri normal working hours – regular phone

calls and visits

4:30-9pm Single nurse on call for North Dublin, can do home visit if necessary

9pm til 8:30 am Telephone advice via night nurses in Inpatient Unit in Raheny

Accessing the serviceReferral received

Next working day: urgency for visit categorised based on need – diagnosis and disease extent, prognosis, functional status, palliative care needs

Waiting time: variable –urgent referrals warrant telephone contact to explain what the need is, identify if a visit is possible.

First visit. Once seen, patients given contact details and can access 24 hour advice.

Where do we fit in?GP remains primary carer

Hospital care continues as appropriate

Ongoing nursing telephone support and visits (NB all changes warrant review of effectiveness)

PHN continues to review for pressure care needs, dressing needs, assessment and access to community physiotherapy/OT and to home carer support

Input by CPC Team Visits by CNS– frequency will depend on needs, patient

preference, patients hospital appointments etc. Often weekly.

Social work assessments/support At home/at hospice/Family meetings

Chaplaincy visits at home

Referral to Day care or Inpatient care as appropriate

Volunteer Service

Introduction of HospiceOften emotional – for patient and family

Breaking bad news

Dying

Anxiety re: changing care/health

Sense of abandonment

Getting to know new team of health care professionals

ChallengesEstablishing a good rapport – trust

Dealing with collusion

Balancing patient and family needs

Not meeting expectations e.g. hands on care

Ensuring consistency amongst healthcare professionals information

Assessment Symptom assessment – physical. Clarifying

medication.

Addressing emotional / psychological / spiritual concerns

Address family concerns

Offer counselling / support

Offer volunteers

Daycare

In-patient Care

Liaise with other health care professionals

Physical Symptoms

Psychological Issues

Psychological Issues for Family

Grief and distress

Exhaustion – emotional and physical

Coping with competing demands

Their loved ones distressed

Unfamilarity with death and dying

Fear of what is to come

Fear of being incompentent

Fear of doing harm

Disagreement/discord within family

Spiritual distressTrying to make sense of things –the Why? Of

what is happening.

Trying to find meaning

Concerns about afterlife

Prayer for support

Decision making at home -in the event of physical change

What do we think is the cause? InformationAccess to tests. Mostly clinical assessment, +/- CIT

Is it reversible? Will treating the cause change the outcome? Does this warrant admission?

What are the symptoms and how can we alleviate them?

What does the patient want?

In light of the change, is the situation sustainable?

Medication Huge source of distress

Poor swallow

Weakness

Drowsiness

Under dosage

Over dosage

Nutrition Food important part of life

- Shows love and concern

- Sharing / nurturing

Food becomes a burden

Issue of starvation

Natural process

Burden and benefit

Physical Environment

House

Stairs

Downstairs Toilet

Unsuitable accomodation

Lack of equipment

Lack of carers

Example –JD, 48JD, 48 y/o lady with metastatic non-small cell

cancer. On chemotherapy. Separated working mother, self-employed. Two children.

Seen at home. Angry, wary. Concerns raised re: teenage daughter – acting up, not aware of extent of disease. Planning for future care of daughters.

Chemotherapy poorly tolerated –vomiting, sepsis. Stopped.

Recovers partially. Family meeting re: illness.

Develops vomiting. Due to see solicitor at home that evening re: will etc

SC infusion antiemetic. GP review. Bloods by CIT – hypercalcaemia and uraemia

Glad of admission via day ward for fluids and bisphosphonate

D/C home on SC infusion. Stopped after a few days.

Develops back pain – known bony vertebral disease. Settles with opioids –problematic constipation. Referred to radiation oncology. Receives thoracic XRT.

Progressive weakens over weeks. Spending much of the day in bed. Worried re: children. Expressing wish to die in hospice, but stay at home as long as manageable.

Back pain escalates over a week –medications titrated with GP. Falls secondary to leg weakness and difficulty passing urine.

Catheterised. Listed for admission to St Francis. No bed. Night-nurse organised.

Bed becomes available. JD admitted to St Francis for terminal care. Dies after a two week admission.

Difficulties For CPC Team Working In Other

Institutions Nursing home staff fill dual role – professional carer / locum

family member

Homecare assumptions re: nurse/carer familiarity with palliative drugs

Difficulty meeting family members – unlike home

Changes in medication often slower to achieve than in the home

Liaising and communicating

With whom?

The patient

The family

The GP

The PHN

Irish Cancer Society Night nursing service

CIT

The Hospital team

A and E

Anticipatory planning

Misconceptions We visit at anytime

We stay all the time

We come when someone dies

We come in an emergency

We replace all other community services – we come in and take over

We have immediate access to beds

We arrange everything

We insist people know we are from the hospice

Why do it? Achievement – Enabling family to cope

Enabling patient to die at home

Improving someone’s subjective quality of life –when time is short, the quality of each day can become very important

Challenging

Privilege

Thank you for listening

Any questions?