Palliative Care Rounds Quality end-of-life care and resources in southeastern Ontario to help achieve it

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1 Palliative Care Rounds Quality end-of-life care and resources in southeastern Ontario to help achieve it Ray Viola, MD Division of Palliative Medicine May 16, 2014

2 Thank You Suzanne Jenson Pain and Symptom Mgmt Consultant Donna Logan South East CCAC Adam Steacie Family/Palliative Care MD, Brockville Greg Patey Family/Palliative Care MD, Kingston Natasha Girard Hospice Kingston Stephen Singh Family/Palliative Care MD, Kingston Joan Schwarze Pain and Symptom Mgmt Consultant Olga Nikolajev South East LHIN

3 Learning Objectives At the end of this session, participants will be able to: 1. List factors that impact on perceived quality of care at the end-of-life 2. Access resources to assist in providing high quality end-of-life care

4 End-of-Life Issues Survey: Veterans Affairs patients (340) 78% male Cancer, kidney, lung & heart diseases Bereaved family members (332) Physicians (361) Other care providers (429) Steinhauser et al, 2000

5 End-of-Life Issues Important to Patients & Caregivers: Physical Kept clean Free of pain Free of shortness of breath Steinhauser et al, 2000

6 End-of-Life Issues Important to Patients & Caregivers: Psychological Know what to expect about physical condition Maintain dignity Sense of humour Free of anxiety Believe that family is prepared for one s death Feel prepared to die Treatment preferences in writing Remember personal accomplishments Steinhauser et al, 2000

7 End-of-Life Issues Important to Patients & Caregivers: Psychological Someone who will listen Comfort with nurse Trust physician Physician with whom can discuss fears Physician who knows one as a whole person Physician comfortable talking about dying Steinhauser et al, 2000

8 End-of-Life Issues Important to Patients and Caregivers: Social Name a decision maker Financial affairs in order Say goodbye Resolve unfinished business with family/friends Physical touch Time with close friends Presence of family Not die alone Steinhauser et al, 2000

9 End-of-Life Issues More Important to Patients Than Physicians Mentally aware At peace with God Not a burden to family Help others Pray Funeral planned Not a burden to society Feel one s life is complete Steinhauser et al, 2000

10 Quality End-of-Life Care Qualitative interviews with: Dialysis patients (48) People with HIV infection (40) Resident of LTC facility (38) Singer et al, 1999

11 Quality End-of-Life Care Domains Symptom management Avoid inappropriate prolongation of dying Sense of control Relieve burden on loved ones Strengthen relationships Singer et al, 1999

12 Quality End-of-Life Care Conceptual Framework 1. Pain & symptom control 2. Dying process not prolonged 3. Prepared for death 4. Support of family & friends 5. Supported decision making 6. Spiritual support and meaning 7. Holistic & individualized care 8. Death in supportive environment/location of choice Howell & Brazil, 2005

13 Preferred Place of Death 214 informal caregivers interviewed after death Home preferred by patient and caregiver (63%) Caregiver preferred institutional death more often (14% vs 5%, p<0.001) Caregivers said place of death was appropriate, even if not preferred (93%) Brazil et al, 2005

14 Preferred Place of Death Dying at home was important to only: 35% of VA patients 30% of bereaved family members It was irrelevant to over 50% of both groups! Steinhauser et al, 2000

15 End-of-Life in Emergency Room Retrospective study of Ontario cancer patients who visit emergency rooms near the end of life Visits often because of symptoms pain, dyspnea, fatigue, nausea, vomiting, constipation many are manageable at home Barbera et al, 2010

16 Palliative Care Community Resources in Southeastern Ontario

17 South East CCAC Supportive Care Program - Metastatic cancer - Amyotrophic lateral sclerosis - End stage non-cancer diseases - Adults receiving active oncology treatment End-of-Life personal support worker assistance - up to 12 hours/day

18 Nurse Consultants Palliative Pain & Symptom Management Consultants Registered nurses CNA certification in Hospice Palliative Care Resource & mentoring for health care professionals Monday-Friday during work hours: Trish MacPherson west part of LHIN - Joan Schwarze central part of LHIN - Suzanne Jensen east part of LHIN

19 Nurse Practitioners Hospice Palliative Care Nurse Practitioners Goal to help reduce hospitalization and ER visits Shared care Submit CCAC Service Request Form Indicate request for NP service Monday-Friday between 08:30-16:30 Amber Robinson Quinte Clarissa Townsend Rural Hastings

20 Palliative Care Educators Palliative Care Education Program Educators: Registered nurses CNA certification in Hospice Palliative Care Michelle Hutchison Carol Northcott For regulated & non-regulated care providers 2500 participants in 175 sessions in

21 Residential Hospices Patient eligibility: PPS 30% or lower CCAC provides services Families can assist with care Hospice North Hastings, Bancroft - 2 beds Heart of Hastings Hospice, Madoc - 2 beds Hospice Prince Edward Foundation, Picton - 3 beds

22 Community Hospices Aim to be part of integrated care and support Provide community support with variety of services Hospice Lennox & Addington Hospice Prince Edward Hospice Quinte Heart of Hastings (Madoc) North Hastings Hospice

23 Community Hospices Hospice Kingston Trained volunteers In-home hospice visiting Caregiver support Weekly day program Bereavement support Advocacy and education Goal to have 7-bed residential hospice by Oct, 2017

24 Kingston Palliative Medicine Queen s Palliative Medicine consultants during work hours after hours (KGH switchboard) Available 24 hours/day, 7 days/week Inpatient consultations at KGH Daily Palliative Care Clinics at Cancer Centre Weekly Dyspnea Clinic at Hotel Dieu Hospital Community consultations and follow-up

25 Palliative Care Unit at SMOL 13 beds 10 for those with estimated survival < 3 months 3 for those with estimated survival < 12 months PPS 50% or lower Diagnosed with a terminal illness Advanced care plan that includes no CPR, no intubation or ventilation, no ICU transfer

26 Brockville Palliative Care Brockville & District Hospice Palliative Care Service Consult Nurses , x 4412 Work with primary care team Day Hospice held weekly x 4417 Volunteer Support x 4417 Bereavement Support x 4415 Brockville General Hospital Including Palliative Care Unit on Garden Street

27 South East LHIN Hospice Palliative Care Planner Olga Nikolajev Belleville Ext Hospice Palliative Care Planning Steering Committee 1) Strengthen 24/7 access to services 2) Enable earlier access to services 3) Establish integrated education plan

28 The Yellow Folder Introduced by community nurse when patient s PPS = 50% Three main components: Information brochure DNR Form Expected Home Death Planning Tool

29 Symptom Response Kit (SRK) Places medications and supplies in the home For managing future sudden changes in the patient s condition

30 Other Palliative Care Resources

31 Advance Care Planning Canadian Hospice Palliative Care Association Speak up Cancer Care Ontario Advance Care Planning in Ontario A Quality Improvement Plan Toolkit https://www.cancercare.on.ca/common/pages/userfile.a spx?fileid=289778

32 Symptom Management Guides Pain Dyspnea Nausea Delirium Bowels Oral care Anxiety Depression Appetite Fatigue Sleep Guides to Practice Pocket Guides Algorithms Smart phone apps Collaborative Care Plans

33 Virtual Hospice Information and support on palliative and end-of-life care, loss and grief For patients, families and health care professionals

34 References 1. Barbera et al. CMAJ 2010; 182: Brazil et al. Palliat Medicine 2005; 19: Bruera et al. J Palliat Care 1991; 7(2): Gibbs et al. Heart 2002; 88(Suppl II): ii36-ii Howell & Brazil. J Palliat Care 2005; 21(1): Singer et al. JAMA 1999; 281: Steinhauser et al. JAMA 2000; 284:

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