Palliative Care 101 Gina M. Basello, D.O. Associate Program Director Jamaica Hospital Medical Center Family Medicine Residency Program

Overview The Aging Population Dying in America What is Palliative Care? Why Palliative Care as a Specialty Scope of Services/Benefits Domains Prognostication

The Aging Population

Dying in America

What is Palliative Care?

Why Palliative Care as a Specialty

Scope of Services/Benefits

Domains

Prognostication

The Aging Population

The Aging Population By 2030, the number of people in the United States over the age of 85 is expected to double to 8.5 million As the Medicare population increases and the distribution shifts to older age groups, there will be increases to aggregate Medicare expenditures. Historically, approximately one-quarter of Medicare expenditures are for last-year-of-life care (Hogan et al., 2001; and Lubitz and Riley, 1993).

By 2030, the number of people in the United States over the age of 85 is expected to double to 8.5 million

As the Medicare population increases and the distribution shifts to older age groups, there will be increases to aggregate Medicare expenditures.

Historically, approximately one-quarter of Medicare expenditures are for last-year-of-life care (Hogan et al., 2001; and Lubitz and Riley, 1993).

Where Do People Die? Hospital – 50% Nursing Home – 30% Home – 20% Where do People WANT to die? Home 1st Hospital 2nd Nursing Home Never

Where Do People Die?

Hospital – 50%

Nursing Home – 30%

Home – 20%

Where do People WANT to die?

Home 1st

Hospital 2nd

Nursing Home Never

WHY? Forces exist in our health care delivery system together with the values related to health and illness, that propel the physician, patient, family towards aggressive, life prolonging care far longer than is medically appropriate; such care typically is provided in the hospital environment, up until shortly before death.

Forces exist in our health care delivery system together with the values related to health and illness, that propel the physician, patient, family towards aggressive, life prolonging care far longer than is medically appropriate; such care typically is provided in the hospital environment, up until shortly before death.

How do Patients View What is a “Good Death” Dying not be prolonged Pain and symptoms controlled Not being a burden to others Control over decision-making Strengthening relationships

Dying not be prolonged

Pain and symptoms controlled

Not being a burden to others

Control over decision-making

Strengthening relationships

Major Causes of Death in America Chronic Diseases Heart disease Cancer Respiratory Disease Stroke Acute Conditions Infections Trauma Homicide/suicide

Chronic Diseases

Heart disease

Cancer

Respiratory Disease

Stroke

Acute Conditions

Infections

Trauma

Homicide/suicide

Status of Palliative Care in the US: S UPPORT Study SUPPORT Study : Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments Approx. 10,000 patients, 5,000 deaths related to 9 serious illnesses during admission to 5 US teaching hospitals

SUPPORT Study : Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments

Approx. 10,000 patients, 5,000 deaths related to 9 serious illnesses during admission to 5 US teaching hospitals

SUPPORT: Phase I Findings 46% of DNR orders were written within 2 days of death 47% of physicians knew when their patients wanted to avoid CPR 38% of patients spent 10+ days in ICU 50% of dying patients suffered severe pain High hospital resource use

46% of DNR orders were written within 2 days of death

47% of physicians knew when their patients wanted to avoid CPR

38% of patients spent 10+ days in ICU

50% of dying patients suffered severe pain

High hospital resource use

Status of Palliative Care in the US: S UPPORT Study SUPPORT Study : Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments Approx. 10,000 patients, 5,000 deaths related to 9 serious illnesses during admission to 5 US teaching hospitals

SUPPORT Study : Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments

Approx. 10,000 patients, 5,000 deaths related to 9 serious illnesses during admission to 5 US teaching hospitals

Palliative Care: Definition “ The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems, is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with anti-cancer treatment.” World Health Organization, 1990

“ The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems, is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with anti-cancer treatment.”

World Health Organization, 1990

Medical Terms Comfort Care End of Life Care DNR Terminal Palliative Care Hospice Care

Comfort Care

End of Life Care

DNR

Terminal

Palliative Care

Hospice Care

The Palliative Care Team PATIENT family Nurses Social Worker Chaplain Dietician Other health care professionals Administration Volunteers Occupational Therapist Other therapies Physiotherapist Pharmacist Physician Community resources Ajemian, Oxford Textbook of Palliative Medicine , 1993

Benefits of Palliative Care Patients Families/Caregivers Providers Hospitals Communities

Patients

Families/Caregivers

Providers

Hospitals

Communities

Improved Clinical Outcomes Palliative care relieves pain and distressing symptoms. Palliative care helps with difficult decision-making. Palliative care helps patients complete life-prolonging or curative treatments. Palliative care boosts patient and family satisfaction.

Palliative care relieves pain and distressing symptoms.

Palliative care helps with difficult decision-making.

Palliative care helps patients complete life-prolonging or curative treatments.

Palliative care boosts patient and family satisfaction.

Comparing Hospice vs. Palliative Care Hospice Prognosis of 6 months or less Focus on comfort care Medicare hospice benefit Volunteers integral and required aspect of the program Palliative Care Any time during illness May be combined with curative care Independent of payer Health care professionals

Hospice

Prognosis of 6 months or less

Focus on comfort care

Medicare hospice benefit

Volunteers integral and required aspect of the program

Palliative Care

Any time during illness

May be combined with curative care

Independent of payer

Health care professionals

What is End of Life and Palliative Care? Dying as a normal life cycle event Personal Awareness Making the transition from living to dying Attitude issues Knowledge/Training Issues Necessary Skills How to move forward Understanding Terms

Dying as a normal life cycle event

Personal Awareness

Making the transition from living to dying Attitude issues Knowledge/Training Issues Necessary Skills

How to move forward

Understanding Terms

Why Teach? Why Learn? Why Practice? Palliative Care fast becoming industry standard Subspecialty Board on the horizon OUR patients life cycle Family Medicine model and philosophy of care Compassionate complete care for advanced chronic illness AND end of life

Palliative Care fast becoming industry standard

Subspecialty Board on the horizon

OUR patients life cycle

Family Medicine model and philosophy of care

Compassionate complete care for advanced chronic illness AND end of life

Family Medicine and Palliative Care Family Physicians must collaborate to ensure that Palliative Care remains within our scope We need to come together for the purposes of: Education Training Research Scholarly Activity Establishing Clinical Standards

Family Physicians must collaborate to ensure that Palliative Care remains within our scope

We need to come together for the purposes of: Education

Training

Research

Scholarly Activity

Establishing Clinical Standards

LCME Standards Clinical instruction should cover all organ systems, and must include the important aspects of preventive, acute, chronic, continuing, rehabilitative, and end-of-life care.

Clinical instruction should cover all organ systems, and must include the important aspects of preventive, acute, chronic, continuing, rehabilitative, and end-of-life care.

ACGME Residents should understand basic legal terms and concepts related to the practice of medicine, especially their legal obligations regarding patient information and the provision of end-of-life care.

Residents should understand basic legal terms and concepts related to the practice of medicine, especially their legal obligations regarding patient information and the provision of end-of-life care.

JCAHO Ethics, Rights and Responsibilities Patient/Family involvement in decision making Address wishes of patient relating to end of life care Provision of Care Interdisciplinary, collaborative manner Pain Assessment and Management!!!

Ethics, Rights and Responsibilities

Patient/Family involvement in decision making

Address wishes of patient relating to end of life care

Provision of Care

Interdisciplinary, collaborative manner

Pain Assessment and Management!!!

Providers’ Need Assessment PGY1s: Know that they don’t know PGY2s: Know more than they think PGY3s and Attendings: Don’t know as much as they think they do

PGY1s: Know that they don’t know

PGY2s: Know more than they think

PGY3s and Attendings: Don’t know as much as they think they do

Essential Components of Palliative Care Communication Decision Making Management of Complications Symptom Control Psychosocial Care Care of the Dying From Institute of Medicine 2001

Communication

Decision Making

Management of Complications

Symptom Control

Psychosocial Care

Care of the Dying

Domains of End-of-Life Care Disease Categories Special Interventions Terminal Care/Dying/ Patient- Family Experiences Communication/Ethics Non-Pain Symptoms/Syndromes Pain

PAIN Pain Assessment Pain Treatment Addiction/Tolerance/Physical Dependence Chronic Non-Malignant Pain Controlled Substance regulations

Pain Assessment

Pain Treatment

Addiction/Tolerance/Physical Dependence

Chronic Non-Malignant Pain

Controlled Substance regulations

Non-Pain Symptoms/Syndrome Nausea/Vomiting Dyspnea Constipation/Diarrhea Delirium Depression/Suicide Sleep Disturbances Anorexia/Cachexia

Nausea/Vomiting

Dyspnea

Constipation/Diarrhea

Delirium

Depression/Suicide

Sleep Disturbances

Anorexia/Cachexia

Communications/Ethics Giving Bad News Running A Family Conference DNR/Advanced Directives Decision Making Capacity Personal Awareness Treatment “Withdrawal” Cross-Cultural Issues Assisted Suicide/Euthanasia

Giving Bad News

Running A Family Conference

DNR/Advanced Directives

Decision Making Capacity

Personal Awareness

Treatment “Withdrawal”

Cross-Cultural Issues

Assisted Suicide/Euthanasia

Terminal Care/Dying Grief/Bereavement Quality of Life Suffering Hope/Spirituality Medicare/Hospice Benefits Home Care Caring for Families

Grief/Bereavement

Quality of Life

Suffering

Hope/Spirituality

Medicare/Hospice Benefits

Home Care

Caring for Families

Special Interventions Hydration/Nutrition Blood Products Antibiotics Rehabilitation Radiation/Chemotherapy/Surgery Interventional Procedures Dialysis

Hydration/Nutrition

Blood Products

Antibiotics

Rehabilitation

Radiation/Chemotherapy/Surgery

Interventional Procedures

Dialysis

Disease Categories Neoplastic Diseases Cardiopulmonary Diseases Endocrine Diseases Hepato-Renal Diseases Infectious Disease/HIV/AIDS Neurological

Neoplastic Diseases

Cardiopulmonary Diseases

Endocrine Diseases

Hepato-Renal Diseases

Infectious Disease/HIV/AIDS

Neurological

Living with Life-Limiting Disease Practical Issues Spiritual Issues Psychological Issues Physical Symptoms Emotional Issues Social Issues Medical Information

Curative vs. Palliative Model of Care

Restoring the Balance Life Prolonging Care Palliative Care

Continuum of Care Model Disease Progression D E A T H B E R E A V E M E N T Curative Intent Palliative Care Curative Care

Prognostication How do you know when your patient is dying? What do you say to your patient and/or their families about prognosis? Where did you learn how to prognosticate? Are you comfortable with prognosticating?

How do you know when your patient is dying?

What do you say to your patient and/or their families about prognosis?

Where did you learn how to prognosticate?

Are you comfortable with prognosticating?

Traditional Domains of Medicine Diagnosis Treatment Prognosis – This important area receives relatively little attention in modern medical training and research

Diagnosis

Treatment

Prognosis – This important area receives relatively little attention in modern medical training and research

Prognosis Important because enables better decision making about care options General physician bias – overly optimistic by 2 to 5 fold Easier for some illnesses Poor prediction skills may reflect educational deficiencies for clinicians We MUST accept certain degree of prognostic uncertainty

Important because enables better decision making about care options

General physician bias – overly optimistic by 2 to 5 fold

Easier for some illnesses

Poor prediction skills may reflect educational deficiencies for clinicians

We MUST accept certain degree of prognostic uncertainty

Prognostication Doctors are poor Prognosticators Overly Optimistic More experienced Physicians make the least Errors Decreased Prognostic Accuracy with Longer Physician-Patient Relationship Most DNR’s are in Last 2 days of Life

Doctors are poor Prognosticators

Overly Optimistic

More experienced Physicians make the least Errors

Decreased Prognostic Accuracy with Longer Physician-Patient Relationship

Most DNR’s are in Last 2 days of Life

The Dying Trajectory Concept first introduced by Glaser and Strauss in 1965 Refers to change in health status over time as a patient approaches death Implications for prognosis, care needs and decision making Varies by individual patient and disease

Concept first introduced by Glaser and Strauss in 1965

Refers to change in health status over time as a patient approaches death

Implications for prognosis, care needs and decision making

Varies by individual patient and disease

Determining Prognosis Functional Status Measurement Scales ADL’s Nutritional Status/Weight Loss

Functional Status

Measurement Scales

ADL’s

Nutritional Status/Weight Loss

Prognostic Tools Most valuable is to note magnitude of change observed since last prediction and incorporate into new prediction Rule of thumb = A patient with advanced cancer who has “taken to bed” without a correctable cause will usually die in a matter of weeks to a few months

Most valuable is to note magnitude of change observed since last prediction and incorporate into new prediction

Rule of thumb = A patient with advanced cancer who has “taken to bed” without a correctable cause will usually die in a matter of weeks to a few months

Determining Prognosis Functional Ability Single most important Predictive Factor How much the patient can do Activity/Energy Level Measurement Scales Karnofsky Index- 100= Normal 0=Dead Less than 50 = less than 6 month prognosis

Functional Ability Single most important Predictive Factor

How much the patient can do Activity/Energy Level

Measurement Scales Karnofsky Index- 100= Normal 0=Dead Less than 50 = less than 6 month prognosis

Activities of Daily Living (ADL’s) Bathing Dressing Ambulating Feeding Toileting Transfer

Bathing

Dressing

Ambulating

Feeding

Toileting

Transfer

Nutritional Status Weight Loss Greater Than 10% Albumin less than 2.5 Decrease Appetite/Ability to eat Three to Six Month Prognosis

Weight Loss Greater Than 10%

Albumin less than 2.5

Decrease Appetite/Ability to eat

Cancer Most predictable Different types and locations often follow similar trajectories Most remain well until 5 to 6 months prior to death Decline slow until 2 – 3 months before and then rapid decline ensues Hospice care initially developed with this trajectory in mind

Most predictable

Different types and locations often follow similar trajectories

Most remain well until 5 to 6 months prior to death

Decline slow until 2 – 3 months before and then rapid decline ensues

Hospice care initially developed with this trajectory in mind

CHF/COPD/CVA, etc More difficult to predict time of death Overall health status low 6 to 24 months prior to death Intermittent acute exacerbations Oscillating from chronic ill health to acute crisis

More difficult to predict time of death

Overall health status low 6 to 24 months prior to death

Intermittent acute exacerbations

Oscillating from chronic ill health to acute crisis

CHF/COPD/CVA, etc…. No guarantee that current dip will be the last one Patients, families AND physicians have trouble breaking the cycle they despise May not be able to definitively say when but should focus on how and where

No guarantee that current dip will be the last one

Patients, families AND physicians have trouble breaking the cycle they despise

May not be able to definitively say when but should focus on how and where

Palliative Care Patients CHF, COPD, Cancer, etc Expected prognosis < 12 months Homebound Deteriorating medical condition at risk for needing symptom management Family conflicts Emphasis of care in the home setting 2 or more ED or Inpatient admissions in the last year Functional or Performance Scale Score Low

CHF, COPD, Cancer, etc

Expected prognosis < 12 months

Homebound

Deteriorating medical condition at risk for needing symptom management

Family conflicts

Emphasis of care in the home setting

2 or more ED or Inpatient admissions in the last year

Functional or Performance Scale Score Low

Patterns of Death The Cancer Pattern ; * Rapid Decline * 70-80% Loss of Function in Last Three Months The Chronic Disease Pattern; * Slow Decline over Years * Harder to Prognosticate * Death often Sudden and Unpredictable

The Cancer Pattern ; * Rapid Decline * 70-80% Loss of Function in Last Three Months

The Chronic Disease Pattern; * Slow Decline over Years

* Harder to Prognosticate

* Death often Sudden and Unpredictable

Prognosis Perspectives Clinicians often will not identify patients with serious life threatening illnesses as terminal When asked, “Is this patient dying?” Most say, “No” YET… When asked, “Would you be surprised if this patient died within the next year?” Most say, “No”

Clinicians often will not identify patients with serious life threatening illnesses as terminal

When asked, “Is this patient dying?”

Most say, “No”

YET…

When asked, “Would you be surprised if this patient died within the next year?”

Most say, “No”

How Do You Know Someone is Dying? “that look” not eating poor function skin changes

“that look”

not eating

poor function

skin changes

Communicating prognosis… Some patients want to plan Others are seeking reassurance Tough questions: “Am I dying?” “How long do I have to live?”

Some patients want to plan

Others are seeking reassurance

Tough questions:

“Am I dying?”

“How long do I have to live?”

… Communicating prognosis Inquire about reasons for asking “Yes… but I don’t know when it will be” “What are you expecting to happen?” “What are your fears?” “Are there things you need to finish before you die?” “What experiences have you had with: others with same illness? others who have died?”

Inquire about reasons for asking

“Yes… but I don’t know when it will be”

“What are you expecting to happen?”

“What are your fears?”

“Are there things you need to finish before you die?”

“What experiences have you had with:

others with same illness?

others who have died?”

… Communicating prognosis Patients vary “planners” want more details those seeking reassurance want less Avoid precise answers hours to days … months to years Remember, we are not good at this

Patients vary

“planners” want more details

those seeking reassurance want less

Avoid precise answers

hours to days … months to years

Remember, we are not good at this

Case Example Mr. Sullivan is 72 years old. He has had lung cancer for 9 months and is now at the end stage. He is admitted to the hospital for worsening shortness of breath and you think this will be his final admission. He is very likely to suffer pulmonary or cardiac arrest. His chances of surviving resuscitation is about 10%. There is a 90% chance he will die anyway. His chances of leaving the hospital alive is <2%.

Mr. Sullivan is 72 years old. He has had lung cancer for 9 months and is now at the end stage. He is admitted to the hospital for worsening shortness of breath and you think this will be his final admission. He is very likely to suffer pulmonary or cardiac arrest.

His chances of surviving resuscitation is about 10%. There is a 90% chance he will die anyway.

His chances of leaving the hospital alive is <2%.

Discussion What are the Palliative Care issues that need to be addressed? Your senior resident, on rounds, is upset about the discussion and asks, “If aggressive treatment will give him a few more months alive with his family, shouldn’t we do that????” What do you say?

What are the Palliative Care issues that need to be addressed?

Your senior resident, on rounds, is upset about the discussion and asks, “If aggressive treatment will give him a few more months alive with his family, shouldn’t we do that????”

What do you say?

Where Do We Go From Here? Education/Training Clinical Care across Continuum Performance Improvement Patient Education/Community Outreach Research

Education/Training

Clinical Care across Continuum

Performance Improvement

Patient Education/Community Outreach

Research

Questions???