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Goals of Care:Beyond the PaperworkMichael Aref, MD, PhD, FACP, FHMAssistant Medical Director of Palliative MedicineCarle Hospital and Physician Group

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PREFACE

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Disclosures

• None

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Objectives

• Understand disease trajectories.

• Review models of care:– Disease-Specific vs Goal-Oriented

– Three Phase Model

• Compare and contrast goals of care and plan of care.

• Understand how specific, patient-centered, goals of care are translated into a plan of care.

Goals of Care (GoC) for this presentation

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THIS THING CALLED

LIFE

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It Is All Going Downhill

Disease Trajectories

bioethicsarchive.georgetown.edu/pcbe/images/living_well_graph.gif

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Birth

Actively Dying

Death

Diagnosis

Treatment

New Problem

Life

Simplified

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Years – Months – Weeks – Days

Birth

Actively Dying

Death

J Pain Symptom Manage. 2014 Jan; 47(1): 77–89.

Diagnosis

Treatment

New Problem

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DISEASE-SPECIFIC VERSUS GOAL-ORIENTED CARE

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Disease-Specific vs Goal-Oriented

Outcomes depend on perspective

N Engl J Med 2012; 366:777-779

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THREE-PHASE MODEL OF GOALS OF CARE

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Three-Phase Model of Goals of Care

Curative or restorative phase (“beating it”)

Comfort phase (“living with disease, anticipating death”)

Terminal phase (“dying very soon”)

Definition

The default position for all patients —all appropriate life-prolonging treatment will be deployed as indicated.

The disease is deemed to be incurable and progressive.

Death is believed to be imminent (i.e., within a few days) — implementation of a terminal care pathway.

Aim

GoC are directed towards cure, prolonged disease remission and/or restoration to the pre-episode health status for those with chronic diseases, especially in the aged care context.

GoC are modified in favor of comfort, quality of life and dignity; period of survival is no longer the sole determinant of treatment choice; life prolongation is a secondary objective of medical treatment.

Comfort, quality of life and dignity are the only considerations.

Definitions and Aims

Med J Aust 2014; 201 (8): 452-455

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Three-Phase Model of Goals of Care

Curative or restorative phase (“beating it”)

Comfort phase (“living with disease, anticipating death”)

Terminal phase (“dying very soon”)

Prognosis

Life expectancy is probably the same as the population mean because the present health episode is unlikely to affect longevity; a key question could be “is there a reasonable chance of the patient leaving hospital and living the same life span as might have been expected before the episode?”; a key question in aged care and chronic disease settings (where the goals might be restorative) could be “is there a reasonable chance of the patient leaving hospital and/or returning to his or her previous level of functioning?”

Life expectancy is usually months, but sometimes years; a key question could be “would I/we be surprised if this patient died in the next 12 months?”

Life expectancy is hours or days; a key question could be “would I/we be surprised if this patient died this week?”

Prognosis

BMJ 2010; 341: c4863Med J Aust 2014; 201 (8): 452-455

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Three-Phase Model of Goals of Care

Curative or restorative phase (“beating it”)

Comfort phase (“living with disease, anticipating death”)

Terminal phase (“dying very soon”)

Level of adverse effects

A high level of adverse effects and even a significant chance of treatment-related mortality might be accepted for curative treatment (e.g., brain aneurysm surgery, bone marrow transplant); while pain and symptom control should always be addressed, comfort may be a secondary consideration if it conflicts with curative treatment.

Active treatment of the underlying disease may be undertaken for specific symptoms (e.g., radiotherapy or chemotherapy for palliative end point in cancer treatment) and/or short-term life expectancy gains; treatment-related adverse effects should be proportionate to the goals and acceptable to the patient.

Active treatment of the underlying disease should stop; no treatment-related toxicity is acceptable (this applies to all medical, nursing and allied health interventions e.g., turns in bed if these are distressing).

Level of Adverse Effects

BMJ 2004; 329: 909-912Med J Aust 2014; 201 (8): 452-455

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Three-Phase Model of Goals of Care

Curative or restorative phase (“beating it”)

Palliative phase (“living with disease, anticipating death”)

Terminal phase (“dying very soon”)

Life-sustaining treatments

Given as needed. Life-sustaining treatments for other chronic medical conditions are usually continued (e.g., treatment with insulin or anticonvulsants) in cases where cessation would result in premature death or preventable unpleasant symptoms such as hyperglycemia and seizures (i.e., symptoms unrelated to the main disease that is anticipated to cause death) or where quality of life would be adversely affected.

Life-sustaining treatments for other chronic medical conditions are usually stopped (e.g., treatment with steroids, insulin or anticonvulsants), unless doing so would cause suffering.

Life-Sustaining Treatments

Med J Aust 2014; 201 (8): 452-455

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Three-Phase Model of Goals of Care

Curative or restorative phase (“beating it”)

Palliative phase (“living with disease, anticipating death”)

Terminal phase (“dying very soon”)

Artificial nutrition and hydration

Given as needed. Given if indicated and desired (e.g., percutaneous endoscopic gastrostomy feeding for head and neck cancer patients with obstructed swallowing).

Usually ceased and replaced with careful hand feeding and rigorous mouth care.

Cardiopulmonary resuscitation

Given as needed. Usually not recommended but should be discussed with the patient, if competent, or their representative.

Contraindicated.

Artificial Nutrition and Hydration and Cardiopulmonary Resuscitation

Intern Med J 2013; 43: 77-83Med J Aust 2014; 201 (8): 452-455

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WHEN WE SAY

GOALS OF CARE

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POLST is a (Small) Part of Goals of Care

Birth

Actively Dying (B)

Death (A)

(C)

www.polstil.org

Diagnosis

Treatment

New Problem

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Speaking and Translating Caring

Goals of Care

• Identify what is important to and priorities for the patient.

• Identify what they hope to achieve by receiving care.

• Identify what they fear will happen because of the disease.

• Life review and legacy building are separate, equal, but not independent parts of care.

Plan of Care• Representation of the goals of care in the form

of– Documentation

• Advanced Directive• Living Will• HCPOA

– Orders• POLST• Code Status

– Medications• Starting and stopping

– Services• Social Work• Chaplaincy• Hospice• Home Health

National Committee for Quality Assurance: Goals to Care

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S.M.A.R.T. Goal

• Specific– What does the patient mean to accomplish with this goal?

• Measurable– What observable shows we are meeting the stated goal?

• Agreed Upon– Are the patient, family, and provider all on the same page?

• Realistic– Is this possible – physiologically, clinically, financially, humanly, etc.?

• Time-Bound– When will this be observable?

General goals cannot be translated into a plan of care

Management Review. AMA FORUM. 70 (11): 35–36National Committee for Quality Assurance: Goals to Care

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Unclear Goals = Unplannable Caring

Goals of Care

• “I’m going to beat this [disease]!”

• “My family won’t let me go to a nursing home.”

• “We’re going to fight this!”

• “I’m going to get my miracle.”

Plan of Care

• These are general, usually not agreed upon, often unrealistic, and do not meet a timeline consistent with life expectancy.

• The plan of care in these case is to explore:– “Tell me what this means to you.”

– “Help me understand more about this by telling me how you feel about…”

And get a family meeting with all the key partners in the patient’s care both family and providers.

vitaltalk.org

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Family Meeting Talking MapStep What you can say

Gather for a pre-meeting “Let’s decide who will talk about what.”“Could I propose a way to structure the meeting?”“When the meeting ends, what would be a constructive outcome?”

Introduce everyone and the agenda “Let’s start with introductions. My name is [x], and my role is [y].”“The purpose of this meeting is to talk about [z].”“Is there anything that you would like to cover in addition?”

Explain what’s happening “Tell me what you took away from our last conversation.”“Could I hear from everybody?”“Here is the most important piece of news.”

Empathize with each person “I can see you are concerned about [a].”“I am impressed that you have been here to support [patient’s name].”

Highlight the patient’s voice “If [patient’s name] could speak, what do you think she would say?”“How would she talk about what is important to her?”

Plan the next steps together “Based on what we’ve talked about, could I make a recommendation?”“I’d like to hear everyone’s thoughts about the plan.”

Reflect post-meeting “What did we learn?”

vitaltalk.org

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Clear Goals Lead to a Care Plan

Goals of Care

• “I want to be able to enjoy the holidays with my family, particularly my grandchildren.”

Plan of Care

• This is specific, measurable, can be agreed upon, may be realistic, and has a set time frame.

• Perhaps a chemotherapy “holiday” or stopping hemodialysis after the holidays. Certainly documenting code status and likely involving some sort of home nursing care, be it private duty, home health, or hospice.

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THANK YOU

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