Prostate Cancer: The Role of Palliative and End of Life Care

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Prostate Cancer: The Role of Palliative and End of Life Care Jill Youd CNS Palliative Care Community Specialist Palliative Care Team St Ann s Hospice

What is Palliative Care? An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness through the prevention and relief of suffering by means of early detection and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual WHO, 2015

Community Specialist Palliative Care Team (CSPCT) Specialist advisory service for patients with complex needs & their carers Access at diagnosis of life-limiting illness; at any point of patient illness Assess/manage symptoms, E&P support, ACP and support to achieve wishes for EOLC, practical advice, referral to therapeutic services Bereavement support Support/education /advice to community services

Common Misconceptions

Hospice Services

Case Study : Mark

62 YO Retired Head Teacher Married to Anne No children Background PMSH Stage 1 seminoma 1974, aged 24 treated with right radical orchiectomy and 30 # EBRT @ Clatterbridge Nocturnal epilepsy Paroxysmal AF High levels of anxiety related to cancer diagnosis

Diagnosis and Treatment G4+3 Adenocarcinoma prostate diagnosed 2008 in Leicester PSA 38 Bone mets Treatment LHRHA converted to IHT 2010 with PSA 0.2

Recent History Transferred to SRFT November 2011 PSA 4.2 Skeletal pain and mobility problems Consultant urologist? Mets? Osteoporosis Dexa 2009 no significant abnormalities Having bisphosphonates in Leicester Up to date imaging arranged PSA risen to 15

Imaging results Bone Scan Hot spot left sacro - iliac joint Abnormalities throughout axial skeleton, ribs, sternum MRI Extensive destruction left sacro - iliac joint consistent with mets T3a N0 disease MDT Hormones Uro-oncology review 3/12 Potential for palliative radiotherapy

March 2012 URO-ONCOLOGY Rising PSA 19 Pain left SI joint and right hip, taking simple analgesia Consideration clinical trials at Christie Started Bicalutamide Palliative radiotherapy right hip Referred to Palliative Care team PALLIATIVE CARE Symptom control pain, constipation, poor mobility Psychological support (S/B Palliative Care Consultant in medical OPA at Hospice 1-2 monthly throughout trajectory of illness)

April December 2012 ONCOLOGY Pain improving PSA 8 on Bicalutamide Holidays in France PALLIATIVE CARE OT Home Assessment Materials on relaxation techniques Breathing strategies/ anxiety management Fatigue management Provision of equipment Continued 2 monthly review in Medical OPD

ONCOLOGY PSA 11.3 2013 Bicalutamide stopped, started Abiraterone Becoming generally weaker Severe back pain MRI scan (Palliative Care Consultant ) to rule out MSCC no disease progression Urology CNS monthly bisphosphonates PALLIATIVE CARE Symptom control pain, constipation, urinary difficulties Attending SAH for complementary therapies & physio Managing to visit France

January 2014 ONCOLOGY Abiraterone stopped Discussed Docetaxel, Diethylstilboestrol, radium 223 Tried Diethylstilboestrol; could not tolerate CT arranged to guide treatment Less well, increasing pain, Urinary freq and urgency Marked lower limb oedema, numbness in feet PALLIATIVE CARE Referred to Lymphoedema service at Hospice

Marked disease progression Sacrum replaced by tumour Sacral nerve roots affected Multiple new mets New liver mets CT results ONCOLOGY Treatment options: Docetaxel or low dose Dexamethasone Enzalutamide not yet licensed & contraindicated by history of seizures Radium contraindicated by liver mets

10 cycles Docetaxel PSA 20 down to 2 February 2014 General improvement in pain, though 1 hospitalisation with neutropenic sepsis PALLIATIVE CARE Managing symptoms of fatigue, constipation, lower limb oedema, numbness to feet 999 call SOB related to stress Managing holidays to France

January 2015 Sudden onset of mid spine pain XR osteoporotic collapse of T12 as consequence of LT hormones PSA doubled to 12 Oncologist considering Cabazitaxel or Mitoxantrone if well enough to tolerate Started Dexamethasone 0.5mg, with PPI PALLIATVE CARE CSPCT now involved as unable to attend clinic to advise around symptoms I visited throughout January DNs visiting for personal cares & support

Rapid deterioration over 4 days Fall at home Hospitalised February 2015 Myoclonus Drowsiness Confusion Back Pain Nausea and Vomiting Paraesthesia to Feet Agitation Lymphoedema? Hypercalcaemia? MSCC Dex 8mg bd - MR no compression, spinal disease, dex stopped s/c opiates, antiemetics, midazolam Bloods - calcium normal, U&E s normal, FBC ok.

Palliative care input Palliative Care Consultant, Palliative Care CNS Symptoms - vomiting, mouth dry and coated with blood, distressed, restless, confused, not sleeping, urinary difficulties and distended bladder, IVI, sips orally, not eating, IVABx Recognition of dying Anne informed prognosis of short days Extreme distress Discussions with wife around active treatment wanted to continue in case of reversible cause of deterioration agreed to stop IVI if tissues Spiritual needs addressed PPD = home DNA CPR discussed with Anne DNAR agreed Discussed at Palliative Care MDT

Palliative Care Plan Initiate EOL Care Plan Catheterise Mouth care CSCI over 24 hours Oxycodone 20mg, Levomepromazine 5mg, Midazolam 10mg Liaised with Oncologist no further treatment options available Anne informed by HSPCT Completion of CMC More settled in days following review

Rapid discharge For EOL care Discharge assessment team involved Drugs rationalised EOLC drugs and CSCI in place Marie Curie and privately funded night sits DN s to provide cares, visiting 3x daily (CHC) CSPCT -support, advice and symptom control Hospice at Home - emotional support, respite Priest GP involved to issue SOI, DNAR and sign EOL care plan

Stabilised Sat out, eating and drinking Nausea resolved March 2015 CSCI converted to oral medications Meditating, classical music Reduced DN support to daily so quality time with Anne CSPCT visiting weekly discussions around Marks understanding of prognosis difficult, Mark and Anne using blocking techniques Planning to move into bungalow in Liverpool RIP in sleep 16.4.15 Bereavement support for Anne

Notable points from case study Evidence of clear lines of communication between Oncology and PCT and GP with clear boundaries, leading to seamless and integrated care and perceived support for patient and wife PCT Holistic approach Focus on QOL and symptom management Oncology Holistic approach Focus on disease process and management Evidence of clear communication between hospital and community PC teams to ensure seamless transition of patient from hospital to community with appropriate support

Q s Communication: Sadly, It was the HSPCT who informed family that no further treatment options were available Should Mark have been involved in dialogue around this earlier? Who should have initiated these discussions? He was never prepared to receive this news Should preferences and issues around EOLC have been discussed and documented earlier to prevent the distress caused to Anne?

Prostate Cancer: The Role of Palliative and End of Life Care

Key points Palliative Care can be accessed at any point in the trajectory of a patients illness if that patient experiences complex or distressing symptoms Palliative Care Teams can potentially be involved with a patient affected by prostate cancer dipping in and out of their care for many years due to the many treatments available and the often excellent treatment response despite many patients presenting with advanced or metastatic disease Thus a close working relationship between oncology and palliative care is of utmost importance WITH excellent systems of communication This can lead to challenges when teams are separated geographically

Professionals involved GP Social services Practice Nurse Counsellors Urologist Occupational Therapists Oncologist Physiotherapists Acute Oncology Pharmacists Urology CNS Discharge assessment team Research Nurses Ambulance Service Ward staff Hospice Service Palliative care Team Radiologists District Nurses Marie Curie Chaplaincy

Any appropriately trained HCP can initiate discussions around advanced care planning and patient preferences for end of life care, at any point throughout the journey. No single set of HCP s can manage the many needs of prostate cancer patients experienced throughout their journey. Holistic, patient centred care requires a multi disciplinary approach.

Cancer Drugs Fund Key points Expanded access to cancer medicines One major downfall of there being so many treatments offered to our prostate cancer patients is that it can be very difficult for individuals and their families to accept when they have reached the end of the line and are to receive best supportive care only making it very difficult to have conversations with our patients about this and making it difficult news for the patient to hear... Whose responsibility is it to initiate such discussions? At what point do we open up these discussions?

Cancer Drugs Fund How do we as nurses/ HP s address the issues arising from multiple treatments being available with potentially toxic side effects? How do we marry this with the option for best supportive care/palliation of symptoms and potential patient comfort? Is it always in the patients best interests to continue treatment? Do we always consider & address this when we offer info and support around cancer treatments in Oncology clinics? How prepared are we to have these difficult conversations with our patients?

Future Challenges 5 year Forward View NHS England October 2014 New shared vision for the future of the NHS based on a changing society. This outlines a clear direction for the NHS with plans to integrates services between primary and secondary care. The future will see services moving into the primary care setting. What does this mean for the management of our patients affected by prostate cancer?

Challenges and Opportunities Opportunities Development of Community services Community chemotherapy Community bisphosphonates IV fluid replacement in home/ closer to home for patients affected by hypercalcaemia Challenges Integration of services Timely and effective and consistent communication between teams Development of effective communication systems Information sharing