Disclosures. What is Palliative Care? The Role of the S-LP in Palliative Care An Overview and Interactive Discussion.

Transcription

1 The Role of the S-LP in Palliative Care An Overview and Interactive Discussion May 2018 Laura Conway, SLP(C), Reg. CALSPO Providence Healthcare University of Toronto Jennifer Wong, SLP(C), Reg. CALSPO Sunnybrook Health Sciences Centre University of Toronto Disclosures Laura and Jennifer were part of SAC working group and ad hoc committee on end-of-life care Co-authored a position statement and toolkit No other disclosures or conflicts of interest What is Palliative Care? An approach to care that improves the quality of life of patients and their families who are facing problems associated with life-threatening illness Prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual Addressing suffering involves taking care of issues beyond physical symptoms. Palliative care uses a team approach to support patients and their caregivers. This includes addressing practical needs and providing bereavement counselling It offers a support system to help patients live as actively as possible until death (WHO, 2014) An approach to or philosophy of care Palliative care giving up Death failure May also encounter terms such as end-of-life care and hospice care Palliative care can be provided along with curative treatment Attempts to provide curative treatment are stopped and generally life expectancy is <6 months in hospice or end-of-life care 1

2 A Model for Palliative Care Disease management Physical Loss, grief Psychological EOL care / Death management Patient & Family Social Practical Spiritual Adapted from Ferris et al., 2002 Palliative Care in Canada Over 250,000 Canadians die every year 90% of these people would benefit from palliative care 70% do not have access to even basic palliative care services Seniors account for 75% of deaths Number is on the rise giving the aging population, a tsunami is coming Currently, account for approx 15% of the population; in 50 years, will account for 24-28% of the population In 50 years, 480,000 deaths will occur annually Living longer with more complex conditions Year (July 1-June 30) 2012/ / / / /2017 Deaths 251, , , , ,501 Subcommittee to update "Of Life and Death" of the Standing Senate Committee on Social Affairs, Science and Technology (2000) Canadian Hospice Palliative Care Association (2015) Palliative Care in Canada Lack of consistency of services Demographics Geography Funding Human resources Eligibility System is currently focused on curing Death-denying society The Economist 2015 Quality of Death Index ranked Canada #11/80 (with a score of 77.8/100; the UK is first with 93.9/100) Palliative and healthcare environment and affordability of care ranked relatively low 2

3 Who needs palliative care? Most have chronic conditions including (but not limited to): Cardiovascular disease (38.5%)* Cancer (34%)* Chronic respiratory disease (10.3%)* AIDS (5.7%)* Diabetes (4.6%)* Others include organ failure (e.g: kidney, liver), MS, PD, RA, neurological disease, dementia, congenital anomalies * Worldwide figures from WHO (2017) Where palliation occurs Home Long-term care facilities Tertiary facilities hospitals and PCUs Community health facilities Outpatient clinics In Canada, over 65% of deaths occur in hospital Place of residence Deaths in hospital Percent in-hospital deaths Canada 66.2 Newfoundland and Labrador 64.7 Prince Edward Island 56.2 Nova Scotia 58.7 Statistics Canada, 2012 *QC in-hospital death numbers include residential and LTC New Brunswick 62.3 Quebec 84.9* Ontario 61.4 Manitoba 85.8 Saskatchewan 53.8 Alberta 59.5 British Columbia 51.2 Yukon 59.2 Northwest Territories 55.4 Nunavut

4 When palliation occurs Why should you care about palliative care? Clinical practice in end-of-life care requires additional knowledge, self-awareness related to beliefs about dying, and level of comfort working with those who are facing severe illness/death and their families (Pollens, 2012) Mortality rate for humans is 100% Goals in Palliative Care Alleviate suffering and pain Heal (not cure) Provide comfort to patient/family Provide a place to find spiritual peace 4

5 Who is on the Team? SLP Physician (primary, consulting) RD and diet technicians PT OT SW Pharmacy Chaplain Audiology Communication health assistants Nursing Recreation therapy Creative arts therapy Ethics IPAC Managers Housekeeping Volunteers Palliative Care and Dysphagia Incidence of dysphagia at end of life is high (up to 79% in recent study by Bogaardt et al, 2014) Try to maximize swallow function and support adequate nutrition as much as possible Identifying Goals of Care It is of utmost importance to respect the wishes of the patient and family when considering end-of-life issues. Social and cultural influences must be recognized and respected, as well. The role of the SLP extends only as far as the patient or family wishes and the SLP needs to understand that what they think may be best for the patient clinically may not always be accepted as best for the patient's quality of life (ASHA) 5

6 Identifying Goals of Care What is important to the patient? Eating to live vs living to eat Taste Act of chewing Mouth comfort What is important to the family/caregivers? Are the family/caregivers pushing oral intake (does the patient even want to eat?) Social bonding (food centric society) An act of caring or healing Treatment and Management Restorative vs compensatory therapy Depends on severity of dysphagia Depends on stage of illness Conservative management vs comfort care The expected outcome of intervention at this point is not necessarily that the patient's abilities will improve, but that they will be able to use the abilities they still possess to interact with family and friends and/or enjoy favorite foods, if that is their wish (ASHA) Symptom Management Pain Feeding and Dysphagia Communication Assessment & Interview Pain scales, assessment of nonverbal signs of pain Swallowing assessment, interview and inventory of symptoms Impairments, activities/ communicative environments, communication partners Individualized interventions Pharmacological & non-pharmacological strategies Diet texture, postures/ positions, strategies when feeding, oral care, etc. Environmental modification, communication partner strategies, tools and aids, etc. 6

7 Symptom Assessment Dysphagia Feeding Impact on meal-time rituals/routines The WHO model of disability (WHO, 2002) Symptom Assessment OPQRSTUV Symptom Assessment Acronym Onset Provoking and Palliating Quality Region Severity Treatment Understanding/Impact Values See handout (Fraser Health Authority, 2016) Counselling: From Symptoms to Goals Conversations to define goals: Are aimed at consensus-building, not forced decision-making May need to happen more than once May need to happen in stages May need to happen in a variety of ways with a variety of forms of information See also examples from: Palecek et al. (2010), Karlawish, Quill, & Meier (1999) 7

8 Counselling: From Symptoms to Goals Think less about Decline in function Your role as an expert/authority Confrontation Think more about Care tasks and goals Your role as a coach/guide Collaboration Ask questions to find out the needs behind the question/concern Provide resources where available Some strategies/philosophies to consider: Motivational interviewing Solution-focused therapy Find what works for you! Counselling: From Symptoms to Goals Advance Care Planning Conversation Guide See handout (Incardona and Myers, 2016) The Dying Process Lunney, Lynn & Hogan (2002) 8

9 Artificial Feeding and Hydration Appropriate in some chronic illnesses (e.g.: XRT or obstruction of the proximal GI tract due to cancer, ALS, some patients with AIDS, etc) In patients with advanced dementia, no evidence to support that it prolongs life, improves functional, nutritional status, or QOL Artificial Feeding and Hydration Side effects of tube feeding GI symptoms: diarrhea, nausea, vomiting Aspiration pneumonia Agitation Infection Blocked tube requiring hospitalization/procedures Side effects of hydration Poor kidney function can lead to fluid pooling in tissue and lungs Pain, shortness of breath Agitation Pain from repeated IV insertions Does it hurt to starve? Many assume it is painful Studies have shown: Patients often do not have hunger or thirst Stopping nutrition/hydration at EOL leads to greater comfort Dry mouth, thirst and secretions were unrelated to hydration Burge (1993), McCann et al (1994) Treat dry mouth 9

10 Why are discussions at the end of life difficult? Societal reasons Cultural/religious views of dying High expectations of medicine and technology Avoidance and fear of talking about death and dying Health Care Providers Lack of training/experience in giving bad news and talking about death Fear of being blamed Fear of uncertainty and not knowing the answers Fear of one s own emotional reaction Fear of one s own mortality Conclusions Issues around death and dying are complex and require education and open communication Important to evaluate goals of patient and family and tailor your treatment/management accordingly Involve interprofessional team 10