EPECEPECEPECEPEC EPECEPECEPECEPEC Goals of Care Goals of Care Module 7 The Project to Educate Physicians on End-of-life Care Supported by the American Medical Association and the Robert Wood Johnson Foundation

Objectives... l Understand the different goals and how they interrelate and change l Understand how to use the 7-step protocol to negotiate goals of care l Be able to communicate prognosis and its uncertainty l Understand how to tell the truth and identify reasonable hope l Understand the different goals and how they interrelate and change l Understand how to use the 7-step protocol to negotiate goals of care l Be able to communicate prognosis and its uncertainty l Understand how to tell the truth and identify reasonable hope

... Objectives l Be able to use language effectively l Be able to set limits on unreasonable goals l Be able to adjust care and communication according to culture l Understand how to identify goals when patients lack capacity l Be able to use language effectively l Be able to set limits on unreasonable goals l Be able to adjust care and communication according to culture l Understand how to identify goals when patients lack capacity

Introduction... l Every one has a personal sense of who we are what we like to do control we like to have goals for our lives things we hope for l Every one has a personal sense of who we are what we like to do control we like to have goals for our lives things we hope for

... Introduction l Hope, goals, expectations change with illness l Physician’s role to clarify goals, treatment plan l Hope, goals, expectations change with illness l Physician’s role to clarify goals, treatment plan

Potential goals of care l Cure of disease l Avoidance of premature death l Maintenance or improvement in function l Prolongation of life l Cure of disease l Avoidance of premature death l Maintenance or improvement in function l Prolongation of life l Relief of suffering l Quality of life l Staying in control l A good death l Support for families and loved ones

Historically, a dichotomous division of goals of care l Focus on curing illness l Little attention to relief of suffering, care of dying l Hospice / palliative care arose in response to a need l Focus on curing illness l Little attention to relief of suffering, care of dying l Hospice / palliative care arose in response to a need

Relieve suffering (hospice) Curative / life-prolonging therapy Presentation Death Figure 1: A dichotomous intent

Multiple goals of care l Multiple goals often apply simultaneously l Goals are often contradictory l Certain goals may take priority over others l Multiple goals often apply simultaneously l Goals are often contradictory l Certain goals may take priority over others

Goals may change l Some take precedence over others l The shift in focus of care is gradual is an expected part of the continuum of medical care l Some take precedence over others l The shift in focus of care is gradual is an expected part of the continuum of medical care

Curative / life-prolonging therapy Presentation Death Relieve suffering (palliative care) Figure 2: The interrelationship of therapies with curative and palliative intent

Palliative care: expanding the options... l Interdisciplinary care l Symptom control l Supportive care l Interdisciplinary care l Symptom control l Supportive care

... Palliative care: expanding the options l Any life-threatening diagnosis l Anytime during illness l Whenever patient / family prepared to accept it l May be combined with curative therapies l May be focus of care l Any life-threatening diagnosis l Anytime during illness l Whenever patient / family prepared to accept it l May be combined with curative therapies l May be focus of care

7-step protocol to negotiate goals of care Create the right setting 2. Determine what the patient and family know 3. Explore what they are expecting or hoping for 1. Create the right setting 2. Determine what the patient and family know 3. Explore what they are expecting or hoping for

... 7-step protocol to negotiate goals of care 4. Suggest realistic goals 5. Respond empathically 6. Make a plan and follow-through 7. Review and revise periodically, as appropriate 4. Suggest realistic goals 5. Respond empathically 6. Make a plan and follow-through 7. Review and revise periodically, as appropriate

Communicating prognosis l Markedly over-estimate prognosis l Helps patient / family cope, plan increase access to hospice, other services l Offer a range or average for life expectancy l Markedly over-estimate prognosis l Helps patient / family cope, plan increase access to hospice, other services l Offer a range or average for life expectancy

Truth-telling and maintaining hope l False hope may deflect from other important issues l True clinical skill to help find hope for realistic goals l False hope may deflect from other important issues l True clinical skill to help find hope for realistic goals

Language with unintended consequences l Do you want us to do everything possible? l Will you agree to discontinue care? l It’s time we talk about pulling back l I think we should stop aggressive therapy l I’m going to make it so he won’t suffer l Do you want us to do everything possible? l Will you agree to discontinue care? l It’s time we talk about pulling back l I think we should stop aggressive therapy l I’m going to make it so he won’t suffer

Language to describe the goals of care... l I want to give the best care possible until the day you die l We will concentrate on improving the quality of your child’s life l We want to help you live meaningfully in the time that you have l I want to give the best care possible until the day you die l We will concentrate on improving the quality of your child’s life l We want to help you live meaningfully in the time that you have

Language to describe the goals of care... l I’ll do everything I can to help you maintain your independence l I want to ensure that your father receives the kind of treatment he wants l Your child’s comfort and dignity will be my top priority l I’ll do everything I can to help you maintain your independence l I want to ensure that your father receives the kind of treatment he wants l Your child’s comfort and dignity will be my top priority

... Language to describe the goals of care l I will focus my efforts on treating your symptoms l Let’s discuss what we can do to fulfill your wish to stay at home l Let’s discuss what we can do to have your child die at home l I will focus my efforts on treating your symptoms l Let’s discuss what we can do to fulfill your wish to stay at home l Let’s discuss what we can do to have your child die at home

Cultural differences l Who gets the information? l How to talk about information? l Who makes decisions? l Ask the patient l Consider a family meeting l Who gets the information? l How to talk about information? l Who makes decisions? l Ask the patient l Consider a family meeting

Determine specific priorities l Based on values, preferences, clinical circumstances l Influenced by information from physician, team members l Based on values, preferences, clinical circumstances l Influenced by information from physician, team members

Reviewing goals, treatment priorities l Goals guide care l Assess priorities to develop initial plan of care l Review with any change in health status advancing illness setting of care treatment preferences l Goals guide care l Assess priorities to develop initial plan of care l Review with any change in health status advancing illness setting of care treatment preferences

When the physician cannot support a patient’s choices l Typically occurs when goals are unreasonable, illegal l Set limits without implying abandonment l Make the conflict explicit l Try to find an alternate solution l Typically occurs when goals are unreasonable, illegal l Set limits without implying abandonment l Make the conflict explicit l Try to find an alternate solution

Reassess decision- making capacity... l Implies the ability to understand and make own decision l Patient must understand information use the information rationally appreciate the consequences come to a reasonable decision for him or her l Implies the ability to understand and make own decision l Patient must understand information use the information rationally appreciate the consequences come to a reasonable decision for him or her

... Reassess decision- making capacity l Any physician can determine l Capacity varies by decision l Other cognitive abilities do not need to be intact l Any physician can determine l Capacity varies by decision l Other cognitive abilities do not need to be intact

When a patient lacks capacity... l Proxy decision-maker l Sources of information written advance directives patient’s verbal statements patient’s general values and beliefs how patient lived his / her life best interest determinations l Proxy decision-maker l Sources of information written advance directives patient’s verbal statements patient’s general values and beliefs how patient lived his / her life best interest determinations

... When a patient lacks capacity l Why turn to others respects patient builds trust reduces guilt and decision-regret l Why turn to others respects patient builds trust reduces guilt and decision-regret

EPECEPECEPECEPEC EPECEPECEPECEPEC Goals of Care Summary Summary