1. Community Palliative Care Team What do we do?
Dr Faith Cranfield
Medical Lead, Community Palliative Care Team,
St Francis Hospice

2. Background
Home care service established by daughters of charity in – 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

3. Catchment Area

4. 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

5. Location of care Home Nursing homes Homeless hostels
Long term psychiatric hospitals
Sheltered accommodation

6. Team members
Nurses 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

7. Activity 2012 New referrals: 974. New patients taken on: 702.
Referral source: GP-204
Beaumont-261
Mater-228
James Connolly-39
Other 260
Nursing visits 8557, Medical visits 693
Deaths 701.
Home-323,
St Francis Hospice -626,
other -390

8. 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

9. Working hours
Mon- 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

10. Accessing the service Referral 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.

11. 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

12. 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

13. Introduction of Hospice
Often 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

14. Challenges Establishing 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

15. 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

16. Physical Symptoms Fatigue/Lack of energy/Weakness Diarrhoea Dyspnoea
Anorexia
Cough
Pain
Delirium
Dry mouth/sore mouth
Poor sleep
Nausea
Restlessness
Early satiety
Falls
Vomiting
Constipation

17. Psychological Issues Loss of role Worry about family
Loss of dignity / privacy
Fear of dying in pain
Financial difficulties
The meaning of life
Loss of future
Helplessness / being a burden
Anxiety
Depression
Fear of death
Loss of control

18. 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

19. Spiritual distress
Trying to make sense of things –the Why? Of what is happening.
Trying to find meaning
Concerns about afterlife
Prayer for support

20. Decision making at home -in the event of physical change
What do we think is the cause?
Information
Access 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?

21. Medication Huge source of distress Poor swallow Weakness Drowsiness
Under dosage
Over dosage

22. Nutrition Food important part of life - Shows love and concern
- Sharing / nurturing
Food becomes a burden
Issue of starvation
Natural process
Burden and benefit

23. Physical Environment House Stairs Downstairs Toilet
Unsuitable accomodation
Lack of equipment
Lack of carers

24. Example –JD, 48
JD, 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.

25. 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.

26. Develops back pain – known bony vertebral disease
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.

27. Back pain escalates over a week –medications titrated with GP
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.

28. 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

29. 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

30. Anticipatory planning

31. 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

32. 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

33. Thank you for listening
Any questions?