elc curriculum for medical teachers

Module #1http://www.growthhouse.org/stanford

ELC Curriculum for Medical Teachers

Death and Dying in the U.S.A.

Pain Management

Communicating with Patients and Families

Making Difficult Decisions

Non-Pain Symptom Management

Venues and Systems of Care

Psychiatric Issues and Spirituality

Instituting Change

http://sfdc.stanford.edu/


Introductions



Brief Overview of End-of-Life Care

How are we doing in end-of-life care (ELC) in this country?



Why a Course in ELC is Needed

• End-of-life care is neglected in physician training• Studies show significant deficiencies in care



Self-Rating Exercise I(Self-Rating Scale: 1 = Low to 5 = High)

Knowledge, Skills, Attitudes Confidence to Teach

1 2 3 4 5 1 2 3 4 5

Module Titles

Overview: Death and Dying in the U.S.A.

Pain ManagementCommunicating with Patients

and Families Making Difficult Decisions Non-Pain Symptom

ManagementVenues and Systems of CarePsychiatric Issues and

Spirituality



Self-Assessed Knowledge Rating Study

• Most physicians lack knowledge about the physical changes of dying

• On a scale of 1 - 5, the mean self-assessed knowledge rating of interns on physical changes of dying was 1.70—The lowest score of 6 items rating clinical expertise

Hallenbeck and Bergen, 1999



Overall Goals of the Course

• To enhance physician skills in ELC

• To foster a commitment to improving care for the

dying

• To improve the dying experience for patients,

families, and health care providers

• To improve teaching related to ELC



END-OF-LIFE CARE:Module 1

Death and Dying in the U.S.A.– Who dies where, and when– Patterns of death and prognostication– The ‘good death’– Experiences with the dying– The last 48 hours



Learning Objectives

Module 1: Death and Dying in the U.S.A.– Describe how and where people die in the U.S.A.– Identify patterns of dying and related issues of

prognosis– Identify the characteristics of what a ‘good’ death

might be for different populations and for yourself– Increase your understanding of events in the last 48

hours of life– Incorporate this content into your clinical teaching



Top Five Causes of Death

1900Influenza, pneumonia 11.8%

Tuberculosis 11.3%

Gastritis, enteritis 8.3%

Heart Disease 8.0%

Stroke 6.2%

Brim et al., 1970

2000

Heart Disease 25.7%

Cancer 20.0%

Stroke 6.0%

COPD 4.5%

Accidents 3.4%

Minino & Smith, 2001



Where We Die

6%

57%

17%

20%

ResidenceNursing HomeHospitalOther

1992 Data, IOM 1997



Dying in the U.S.A.: Epidemiology & Economics

Annual deaths (2000): 2.40 million

Percentage in Hospice: 17% – Up from 11% in 1993

Expense of dying (1987):– 0.9% of population– Last six months cost: $44.9 billion (in 1992 dollars)– This is 7.5% of total personal health care expenditures

Cohen et al., 1995



Dying is Largely Publicly Funded in U.S.A.

• 70% of people dying are covered by Medicare

• 13% of Medicare recipients also receive Medicaid

Gornick et al., 1996



30% of families are impoverished by the process of dying

Covinsky, 1994

Economic Impact on Families by a Death in the Family



• 2.4 million people die annually in U.S.• 70% of these covered by Medicare• $44.9 billion annual cost• Only 48% of that comes out of Medicare• 30% of families are impoverished by a death

The Facts of Life About Dying



Trajectory of Steady Decline

Functional Status

100%

Time

0 6 months



Other Dying Trajectories



Implications of different trajectories of dying

Brainstorm



• Our ability to predict who is dying• Reimbursement systems • Where people die• Medical needs of dying patients• The impact of the dying process on patient and

family

Different Dying Trajectories Affect…



Fantasy Death Exercise

What are your criteria for a ‘good’ death?

The only hitch, as in life, is that you have to die.

Imagine you are there right now.

Notice where you are, what your are doing, who is with you, what it is like, perhaps sounds, smells, other sensory specifics…



Discussion

Themes for a ‘good’ death



Themes for a ‘Good’ Death

• Home• Comfort• Sense of completion (tasks accomplished)• Saying goodbye• Life-review• Love



• Sudden death in sleep

• Dying at home

• Dying engaged in meaningful activity

Common Ideal Death Scenarios



Dying Involves a Lot of People



Discussion

• What do these themes and scenarios imply for our work as physicians?

• Few ‘ideal’ deaths contain medical settings or staff

• What does this mean to us, and how do we deal with it?



• How many dying patients have you cared for?

• Think of a particularly memorable case

What made it memorable to you?

Experiences with Dying



Attributes of dying well and problematic dyingPositive Themes Negative Themes

Discussion of Cases



• How do you know a person is dying?

• What are some of the signs of imminent death?

The Last 48 Hours



Signs that Suggest Active Dying

• No intake of water or food

• Dramatic skin color changes

• Respiratory mandibular movement (RMM)

• Sunken cheeks, relaxation of facial muscles

• Rattles in chest

• Cheyne-Stokes respirations

• Lack of pulse



SUPPORT Study N=9105

• < 40% had discussed CPR preferences• 49% wanting CPR withheld did not have DNR

orders• 50% of all DNR orders written within last 48

hours of life• 50% were assessed with moderate to severe

pain half of the time during last 3-days of life



• 91.5% of deaths peaceful• New pain in 29.5% of cases• Pain exacerbated in 21.5% of cases• No patient experienced persistent, severe pain• 91% of patients were on opioids

Lichter and Hunt, 1990

Most Hospice Deaths Judged Peaceful



Symptom PercentNoisy, moist breathing 56Urinary incontinence 32Urinary retention 21Pain 42Restlessness, agitation 42Dyspnea 22Nausea, vomiting 14Sweating 14Jerking, twitching 12Confusion 08

Lichter and Hunt, 1990

Symptoms & Signs in the Last 48 Hours



Events of the Last 48 Hours

Orderly loss of the senses and desires

• Hunger• Thirst (but persistent dry mouth)• Speech• Vision• Hearing and touch



Loss of Hunger

• Families tend to want to nurture• A basic way to nurture is to feed• Families may be distressed if patient doesn’t eat

- Distress arises from:• Inability to nurture loved one who is dying• Fear that patient is ‘starving’ (suffering)



Dry mouth is misinterpreted as thirst

Loss of Thirst



• Loss of two-way verbal exchange is a challenge

• At this point the family may realize that the patient is really dying

• Difficulty with communication brings up many questions

Loss of Speech



• Patient may appear to stare off in space, as if looking through people

Loss of Vision



• These senses appear to be the last to go

• Knowing this allows families to be involved far into the dying process

Loss of Hearing & Touch



Terminal Syndrome Characterized by Retained Secretions

• Lack of cough• Multi-system shut-down• Not always associated with dyspnea• Vigorous hydration may flood lungs• Deep suctioning is generally ineffective• Role of IV and antibiotics is controversial



Physician Checklist

• Treatment– Switch essential medications to non-oral route– Stop unnecessary medications, procedures, monitoring

• Evaluate for new symptoms– Pain, dyspnea, urinary retention, agitation, respiratory secretions

• Family – Contact, engage, educate, facilitate relationship with dying

patient, console

• Yourself– Bear witness



• Describe how and where people die in the U.S.A.

• Identify patterns of dying and related issues of prognosis

• Identify the characteristics of what a ‘good death’ might be for different populations and for yourself

• Increase your understanding of events in the last 48 hours of life

• Incorporate this content into your clinical teaching

Learning Objectives


elc curriculum for medical teachers

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