Community Palliative Care Team What do we do?

1. Community Palliative Care TeamWhat 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 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

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. IntroductionofHospice 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 • Anorexia • Pain • Dry mouth/sore mouth • Nausea • Early satiety • Vomiting • Constipation • Diarrhoea • Dyspnoea • Cough • Delirium • Poor sleep • Restlessness • Falls

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

18. PsychologicalIssuesforFamily • 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. 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. 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?