PALLIATIVE CARE FOR THE HEART AND STROKE PATIENT December 8, 2017 1
Faculty Disclosure Faculty: Jeff Myers, MD, MSEd, CCFP (PC) Associate Professor, University of Toronto Palliative Care Physician, Sinai Health System Relationships with commercial interests: Not Applicable Potential for conflict(s) of interest: Not Applicable 2
Mitigating Potential Bias All the recommendations involving clinical medicine are based on evidence that is accepted within the profession. All scientific research referred to, reported, or used is in the support or justification of patient care. Recommendations conform to the generally accepted standards. The presentation will mitigate potential bias by ensuring that data and recommendations are presented in a fair and balanced way. 3
Learning Objectives By the end of this session, participants will be equipped to: Outline an expanded and earlier role for palliative & supportive care of Heart & Stroke patients Describe the roles for Heart & Stroke clinicians in palliative & supportive care provision. Explain what it means to integrate a palliative approach to care of the Heart & Stroke patient. 4
Defining Palliative Care
Curative / Remissive Therapy CG Support & Bereavement Presentation Palliative Care EOL Care Death This is now outdated.why?
What s the impact of palliative care? Patient, family & system outcomes: reduced symptom burden less anxiety and depression less caregiver distress and trauma better quality of life less aggressive treatments fewer unwanted tests, investigations fewer acute and critical care admissions lower health care costs Smith et al., 2012; Temel et al., 2010; Bakitas et al., 2009; Zimmerman et al 2013
Palliative Care: Evidence Study population: comprised solely of pts with incurable metastatic NSCLC at diagnosis Intervention: outpatient palliative care consultation when diagnosed At baseline, population known to be highly symptomatic with a mean survival ~10 mos
Palliative Care: Evidence Pts assigned to early palliative care (i.e. at the time of diagnosis) Intervention = 11.6 mos (p=0.02) Control = 8.9 mos OUTCOMES Greater understanding of illness Less IV chemo in last 60 days Better quality of life Less anxiety & depression Lived longer Survival benefit greater than Tarceva
What s the impact of palliative care? Every study to date shows significant value Heart failure Lung disease Kidney failure Neurodegenerative
How will palliative care needs of patients & families be met?
A: Needs are complex enough specialist palliative care is required throughout illness journey Matching complexity of needs with resources A Specialized Palliative Care B: At first needs are met by primary clinicians. Specialist palliative care meets needs when they become complex C: Needs are mostly met by primary clinicians. Specialized palliative care meets the needs for episodes when needs are complex D: Needs are met by primary clinicians who access mentors (i.e. specialized palliative care) when needs increase in complexity E: Needs are met by clinicians with primary palliative care competence throughout illness journey COMPLEXITY OF NEEDS B C D E COMMUNITY COMMUNITY COMMUNITY Diagnosis Living with progression End Stage Illness Primary Palliative Care 13
Primary and specialty care teams are supported and mentored by specialized palliative care clinicians Primary care teams Primary Level Palliative Care Family health teams, groups Long term care teams Nursing home teams Community teams Solo practitioners Retirement home teams Caregivers Medicine teams Geriatric teams Pediatric teams Nephrology teams Respirology teams Cardiology teams Neurology teams Oncology teams Critical Care teams Surgical teams Emergency Dept. teams Specialty care teams
What does this mean for patients with heart and stroke conditions?
Stroke Quality end-oflife experience Effective advance care planning 17
Heart Stroke Failure Long-term symptom management Iterative & contextual advance care planning High risk of inaccurate illness understanding 18
Heart & Stroke Diverse palliative care needs Acute & unexpected end-of-life Advance care planning for stroke pts/family + healthy Longitudinal and often complex symptom management and decision-making 19
Currently many substitute decision makers experience trauma from the decisions they are asked to make on behalf of incapable patients Solution: Effective advance care planning & goals of care discussions
What did palliative care clinicians do? 21
Palliative Care Clinical Protocol The conversation Assessed physical & psychosocial symptoms Clarified illness understanding Explored goals of care Assisted with decision making about treatment 22
Person Centered Decision-Making 23
Palliative & EOL Care Indicators Advance Care Planning Indicators process through which a patient, in consultation with HCPs and family members, makes pre-determined decisions regarding their healthcare in the event they should become incapable of participating in decision making at a later time. Often in patients with stroke, the direction of these decisions is unclear for the family when the patient is unable to participate in decision making. primary goal of ACP conversations is to determine the individual s goals of care 24
Palliative & EOL Care Indicators Advance Care Planning Indicators 1. % of stroke pts who have participated in ACP or who have a documented conversation with an HCP about resuscitation, hydration or feeding preferences 2. % of stroke pts identifying substitute decisionmaker 3. % of stroke pts who complete a personal or advance care directive documented on their chart
Palliative & EOL Care Indicators Advance Care Planning Indicators discussion of the patient s preferences and medical appropriateness of therapies such as: feeding tubes hydration treatment of the current illness admission to intensive care ventilation cardio-pulmonary resuscitation For most, this approach will not be the most effective route to decision-making
Feb 2017 International experts: define components and outcomes Prepares people in varying health states for medical decision making, not just at the end of life ACP Purpose: elicit values and personal life goals, which can guide future treatment recommendations Should start with overall personal life goals and values and then these values should be translated by clinicians into more specific discussions concerning medical treatments over time
HOW a person makes healthcare decisions Values Goals Information Evidence - what s important - why it s important Decisions - about disease - about treatments Two parts of the equation BOTH are needed to be effective
Values Goals We give lots of information and evidence about disease and treatments Often neglect person side of the equation How can values and goals be translated to treatment decisions?
The following video clips are of ACP conversations with two healthy people We begin with a focus on Bernie Clips will be followed by details of a future scenario in which a decision about consent for an offered treatment needs to be made by Bernie s SDM YOU are in the role of Bernie s SDM and will need to make a decision about consent for an offered treatment plan
The Halligans Frances Bernie Rachael, daughter, is a family physician
The Halligans ACP conversations occurred for both Bernie & Frances at the same time Perspectives are shaped through personal experience and those of family and friends
Remember you are Bernie s SDM
What s your understanding of what will be discussed today?
Bernie is asked about his values. The two most important values to him are family and dignity. Expanding on dignity, the role of family in providing care is very important to Bernie.
What do you value about family?
What are the mental or physical states you consider intolerable? What do you consider acceptable?
Bernie expands further.
Bernie stated he does not want to be kept alive on machines. What if machines were used temporarily and there was a chance you would recover?
If you were near the end of your life, what might make it meaningful or peaceful?
Two years later Bernie is unconscious in the ED with a ruptured cerebral aneurysm YOU are his substitute decision maker His only chance of survival is with neurosurgery Based on his current status, the neurosurgeon outlines best case scenario with surgery:
Two years later Small chance he ll be able to recognize family members Almost no chance he ll be able to tell stories Very small chance he ll be able to speak a few words Do you consent to proceed with surgery? OR Do you consent to focus on comfort and not proceed with surgery?
I rely on the medical profession, they know their job if doctors feel it s a hopeless case Hopeless is subjective, open to interpretation and can only be defined by a person I want life to end naturally i.e. not hooked up to machines Hooking me up to machines to keep me going for a couple of days, I don t want that A 1% chance? Yes, I suppose. You want to live as long as you can Focus on treatments often leads to confusing and conflicting statements
What s your understanding of what will be discussed today?
What do you value? What gives life meaning?
Frances clarifies what is meant by 1% from discussion with Bernie. Rachel spots a moment when the RIGHT information can be explored.
Frances: Summary 1st Discussion Values: interacting with family, faith, independence From these values we could begin to clarify what is acceptable and what is intolerable: Acceptable: Physical incapacitation Being at least 40% of herself Unacceptable: Being a burden Hooked up to machines Needs further clarifying: How SDMs can practically use 40%
2nd discussion Scenario: unexpected event and decisions need to be made urgently about care Outcome = some likelihood of recognizing & interacting
Arriving at the RIGHT information for Frances
Shifting focus back on Bernie
Rachael paints a clear picture of the scenario outcome for Bernie, which helps clarify
Summary FOR BOTH Physical incapacity is acceptable Not recognizing / interacting with family are not tolerable FRANCES - values interacting with family & independence Only if it s probable she will recognize and interact with family would she want treatments pursued BERNIE - values interacting with family and independence Only if Bernie can be Bernie would he want treatments pursued We needed to take a different road to get there Required focus on values THIS is the information that can guide decision-making
Broad Statements tend to NOT be helpful to SDMs Commonly used Think about it for a moment No heroics and no machines No tubes Do everything Ever? Or when there is no chance of recovery? What about a 90% chance? What if the circumstances were short term and reversible would a tube be acceptable? What does this mean? What state of being is to be achieved? How will SDMs know everything has been done?
Helpful to SDMs No heroics and no machines No tubes Do everything What experiences bring you to this? What is it about heroics and machines? What is it about a tube? What does it mean to not do everything? What worries or fears come to mind? How should we approach reconciling this?
Take Homes For some, the outcome of losing some degree of physical independence is unacceptable or intolerable For others, the outcome of losing some degree of mental independence (i.e. cognitive ability) is unacceptable or intolerable
Take Homes Broad statements are often made in ACP. Most of the time these do NOT help guide decision-making When a broad statement is made, it should trigger an exploration of WHY A person values the potential outcome of a treatment not the treatment itself This ensures the person is part of the process
Palliative & EOL Care Indicators Advance Care Planning Indicators process through which a patient, in consultation with HCPs and family members, makes pre-determined decisions regarding their healthcare in the event they should become incapable of participating in decision making at a later time. Often in patients with stroke, the direction of these decisions is unclear for the family when the patient is unable to participate in decision making. primary goal of ACP conversations is to determine the individual s goals of care
Update on Guidelines to Manage Heart Failure
Learning Objectives By the end of this session, participants will be equipped to: Outline an expanded and earlier role for palliative & supportive care of Heart & Stroke patients Describe the roles for Heart & Stroke clinicians in palliative & supportive care provision. Explain what it means to integrate a palliative approach to care of the Heart & Stroke patient. 74
Questions? 75
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