Medical Care Near the End of Life: Understanding Quality Qualitatively

Ken Rosenfeld, M.D.Staff Physician, VA Greater Los AngelesAssistant Professor of Medicine, UCLA

Why Humanities?

• Medium to understand important content areas– Ethics– Communication– Emotions– Existential issues

• Therapeutic in fostering self-reflection and personal healing

The Arts and Medicine

“The science and art of medicine converge at the point where physicians meet poets [and artists]: the concern for the human condition”

Lester Friedman, Ph.D.

Program in Communication and Medicine

Northwestern University

A historical perspective on end of life care

“They endeavoured to do good, and to save the lives of others. But we were not to expect that the physicians could stop God's judgements . . . it is not lessening their character or their skill, to say they could not cure those that . . . were mortally infected before the physicians were sent for, as was frequently the case.”

Daniel Dafoe A Journal of the Plague Year (1722)

A brave new world?

“The ongoing revolution in biomedical science is of an unprecedented magnitude, is accelerating dramatically, and promises almost unlimited opportunity for the betterment of humankind…”

Opportunities for medical research in the 21st century. JAMA.

Feb 7 2001 285(5):533-4.

A brave new world?

“Oh yeah. We see stuff like this in our ER all the time... Guys come in all shot up like this, all discombobulated and by the time they leave they’re whistlin’ a tune.”

Billy, Chicago Hope “The Day of the Rope”

The dying patient’s perspective . . .

“What tormented Ivan Illych most was the deception, the lie, which for some reason they all accepted, that he was not dying but was simply ill, and that he only need keep quiet and undergo a treatment and then something very good would result.”

The Death of Ivan Illych

Leo Tolstoy, 1886

SUPPORT StudyJAMA 1995;274:1591-1598

• Main design:– Observational study at 5 teaching hospitals– 9105 severely ill patients; 6 month mortality

47%– Phase 1: 2-year observation without

intervention– Phase 2: controlled trial of adding nurse

educator

SUPPORT StudyMain Results

• 47% physicians knew patient’s DNR preference

• 46% DNR orders written 2 days before death

• 38% patients who died spent 10 days in ICU

• 50% patients who died had moderate to severe pain for their last 3 days

• Intervention had no impact on any major outcome

SUPPORT StudyMain Conclusions

• Significant problems with end of life care– Discussing/adhering to patient preferences– Many prolonged ICU deaths– Poor pain relief for those who die

End of Life Care for Children Dana Farber Study

• Interviews with parents of children who died of cancer at Dana Farber Cancer Institute, Boston

• 103 eligible parents interviewed

Wolfe J et al, Symptoms and suffering at the end of life in children with cancer. N Engl J Med 2000;342:326-333.

Dana Farber Study: Results

• 89% experienced ‘a lot’ or ‘a great deal’ of suffering from at least 1 symptom

• 51% experienced ‘a lot’ or ‘a great deal’ of suffering from 3 or more symptoms

• 21% were ‘often’ afraid

How Does End-of-life Care Impact On Providers?

• Objectives -- to learn providers’ perceptions of end-of-life care of hospitalized patients

• Methods– 5 hospital survey -- 687 physicians & 759 nurses

– Medical and surgical attendings and housestaff

– 123 items, validated, response rate over 60%

Solomon M et al, Am. J. Public Health 1993;83:14-23

Decisions Near the End of Life:

Main Results

Perceptions about end-of-life care:

• 46% had acted against their conscience

• 70% housestaff acted against their conscience

• 4x more frequently worried about overtreatment than undertreatment

• Likely that pressures to treat aggressively cause providers to betray their conscience

Caring for patients near the end of life – why is it so hard?

• Uncertainty about prognosis

• Decision to shift goals often irrevocable

• Insufficient technical training

• Medical culture regards death as failure

• Suffering is difficult

What is Suffering?

“The state of severe distress associated with events that threaten the intactness of a person.”

“An affliction of the person, not the body.”

Cassell EJ. Diagnosing Suffering: A Perspective. Ann Intern Med. 1999;131:531-534

What is Suffering?

To understand suffering we must understand the individual - to understand the impact of the physical state on the whole person.

Suffering and the Whole Person

Physical

Social

Spiritual

Psychological

Recognizing Suffering

“Are you suffering?”

“Are there things that are worse than the pain?”

“What exactly are you frightened by?”

“What is the worst thing about all of this?”

What does quality of care mean when a person is dying?

Need to identify the following:

• The meaning of “a good death”

• Attributes of providers (and the health care system) that facilitate a good death

Defining a good death

• Focus groups of chronically ill, LTC residents• 5 dimensions of a good death

– Pain/symptom management

– Avoiding prolongation of dying

– Achieving a sense of control

– Relieving burden on others

– Strengthening relationships with loved ones

Singer PA et al. Quality end-of-life care: Patients’ perspectives.

JAMA. 1999;281:163-8

Defining a good death: #2• Durham, NC study of chronically ill patients,

bereaved family members, health professionals• Focus group methodology• Study results used in national survey

Steinhauser et. al. In search of a good death: observations ofpatients, families, and providers. Ann Intern Med.2000;132:825-832.

Defining a good death: #2Results

• Pain and symptom management

• Preparation for death

• Completion

• Contributing to others

• Affirmation of the whole person

• Clear decision making

Defining a good death: summary

• Medical care dimension– Sx management– Circumstances surrounding death

• Interpersonal dimension

• “Intrapersonal” dimension– Sense of preparedness/control– Sense of meaning/a “well-lived life”

Oh, Lord, give us each his own death

Rainer Maria Rilke

Developmental tasks at the end of life

• Sense of completion of worldly affairs

• Sense of completion of relationships with community

• Sense of completion of relationships with family/friends

• Sense of meaning in one’s individual life

• Sense of meaning of life in general

Developmental tasks at the end of life

• Love of self

• Love by others

• Acceptance of the finality of life

• Surrender to the unknown, “letting go”

Quality of care: physician attributes

• Seattle study of pts w/ advanced illness, bereaved family members, nurses, EOL MDs

• 11 focus groups• Reflections on medical care pts had received

Curtis JR et al. Understanding physicians’ skills at providing end-of-life care: perspectives of patients, families, and health care workers. J Gen Intern Med 2001;16:41-9

Quality of care: physician attributes Results

12 dimensions, 55 specific components:

• Communication with patients

• Emotional support

• Accessibility/continuity

• Competence

• Respect/humility

• Team communication/coordination

Quality of care: physician attributes Results (cont.)

• Patient education

• Personalization

• Pain/symptom management

• Inclusion/recognition of family

• Attention to patient’s values

• Support of patient decision making

Summary: Quality of care at the end of life

• Adherence to patient values/preferences• Symptom management• Continuity/coordination of care• Care for the whole person, including

emotional and spiritual well-being• Family support• Circumstances around death – home vs.

hospital, ICU use, CPR/ventilation• Survival duration

Conclusion

“ A life ended with much unfinished business or uncontrolled suffering has not been met with due respect, and does not leave good memories.”

Dame Cesily Saunders

Conclusion –Advice From Avedis

It is the ethical dimension of individuals that is essential to a system’s success. Ultimately, the secret of quality is love. You have to love your patient, you have to love your profession, you have to love your God. If you have love, then you can work backward to monitor and improve the system.

Avedis Donabedian. A Founder of Quality Assessment Encounters a Troubled System Firsthand. Health Affairs. Jan / Feb 2001 20(1):137-141.