CLINICAL ETHICS IN PALLIATIVE CARE CONSULTATION:

REFLECTIONS FROM THE BEDSIDE

Robert C. Salinas, MDAssociate Professor

OU Department of Family MedicineOUMC Palliative Medicine

Disclosure

I, ROBERT C. SALINAS, do not have a financial interest/arrangement or affiliation with one or more organizations that could be perceived as a real or apparent conflict of interest in the context of the subject of this presentation.

Overview

Describe the changing landscape with regards to people living with serious life-limiting illnesses

Describe the challenges in delivering optimal care for people living with serious life-limiting illnesses

Discuss the role of clinical ethics that guide palliative care at the bedside

So what about people who live with a serious life-

limiting illness? Do not fit into the current primary

care model of delivery of care Experience untreated symptoms Have unmet personal care needs Experience high caregiver burden

Transitions Across Acute Care Settings For The Very

Sick• Patients with serious life-limiting

illnesses often move from one setting to another

• Goals of care are often not defined when patients cross acute care settings

• Caregivers on the sending team and receiving team often do not communicate effectively when handing over patient care

Leading Causes of Death in the United States

1. Diseases of the heart 28.5%

2. Malignant tumors 22.8%

3. Cerebrovascular diseases 6.7%

4. Chronic lower respiratory diseases 5.1%

5. Accidents (unintentional injuries)4.4%

6. Diabetes mellitus 3.0%

CDC/NHS, National Vital Statistics System , 2014

Overview of Medicare’sHospice Benefit

Covers palliative and support services for beneficiaries who have a life expectancy of six months or less if the terminal disease with which they have been diagnosed follows a normal course

Agree to forgo curative treatment for the terminal illness (DNR not needed)

Two physicians certify initially

Overview of Medicare’sHospice Benefit

The first hospice benefit period is 90 days If illness continues to engender the

likelihood of death within 6 months, the patient can be recertified for another 90 days

After the second 90-day period, the patient can be recertified for an unlimited number of 60-day periods, as long as he or she continues to have a life expectancy of 6 months or less

DeathDiagnosis of Serious Illness

Hosp

ice

Curative Care

Pall

iati

ve C

are

Lynn, JA. 2004

Bereavement Care

Traditional Model of Care for Patients with Advance

Illness

What do patients want?

Pain and symptom control Avoid inappropriate prolongation of the

dying process Achieve a sense of control Relieve burdens on family Strengthen relationships with loved ones

Singer et al. JAMA 1999;281 (2):163-168

Care in the HospitalSUPPORT Study-9000 patients in 5 teaching hospitals

SUPPORT study-9000 seriously ill adults 47% of physicians knew when their patients

preferred to avoid CPR 46% of do-not-resuscitate (DNR) orders were

written within 2 days of death 38% of patients who died spent at least 10

days in an intensive care unit (ICU) For 50 % of conscious patients who died

in hospital, family members reported moderate to severe pain at least half the time.

JAMA 1995; 274(240):1591-1598

The last month of life for cancer patients

What happens: Chemotherapy (40%) Emergency department visits (48%) Hospital admissions (50%) No hospice referral (35%) Late hospice referral ( median 16 days)

Consequences High 30-day hospital mortality Suffering Costs Opportunities lost Temel et al. Cancer 2008:

113:826-33

It was true, as the doctor said, that Ivan Ilych’s physical suffering were terrible, but worse than the physical sufferings were his mental sufferings, which were his chief torture….”Go away! Go away and leave me alone!” From that moment the screaming began that continued for three days, and was so

terrible that one could not hear it through two closed doors without horror.

Leo Tolstoy, The Death of Ivan Ilyich

REFRACTORY

The Nature of Suffering and the Goals of Medicine

“The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick.”

“Failure to understand the nature of suffering can result in medical intervention that, though technically adequate, not only fails to relieve suffering but becomes a source of suffering itself.”

Eric Cassell, NEJM. 1982;306:639-45

Definition of Palliative Care

Palliative care is specialized medical care for people with serious illnesses. It is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.

Palliative care is provided by a team of doctors, nurses, and other specialists who work together with a patient's other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.Center to Advance Palliative Care

DeathDiagnosis of Serious Illness and goals of care established

Hosp

ice

Curative Care: optimizes disease-specific treatments

Palliative Care: maximizes comfort and quality of life

Bereavement Care

Integrated Care for Patients with Advance Illness

Lynn, JA. 2004

How palliative care works

Team-based care Collaboration with primary physicians Individualized treatment Interdisciplinary Continuity Intensive communication and support

My Uncle Ben

OUMC Palliative Care Consult Service: The First 8 Months

Began as a pilot program during the middle of October 2013

For a hospital of our size, expected to see 5-10 patients a month the first year

Operates Monday through Friday, 8 am to 5 pm Led by Clinical Nurse Specialist (CNS) with MD

attending support Consults initiated by telephone, pager, and EPOM Written consult note with follow-up telephone call Collaboration with Pastoral Care and Social Work

Services

Demographic Data From The First 8 Months

Female = 103 Male = 61 Average age= 58 years (range 18-89) Race/Ethnicity

Caucasian 120 African American 26 Native American 9 Hispanic 4 Vietnamese 3 Filipino 2

Number of New Consults for Months October 2013-June 2014

OctNov Dec Ja

nFe

b MAp

rilMay

June

0

5

10

15

20

25

30

Age Distribution for Patients Who Were Seen In Consultation

18- 30 31-40 41-50 51-60 61-70 71-80 81-900

5

10

15

20

25

30

35

40

45

50

Nu

mb

er

Age Groups

Primary Diagnosis

Malignancy Neurological insult Liver failure Sepsis Heart failure Pulmonary failure End-stage-renal-disease Severe trauma

26

Inpatient Palliative Care Consults, Total of 164, Why Were We Consulted?

Symptom management Pain Nausea/malignant bowel obstruction Shortness of breath Anxiety

Communication Conflict resolution (patient-family, family-staff) Goal setting

Process of care/transitions of care Complex discharge planning Understanding Hospice Care Benefit

27

Inpatient Palliative Care Consults, Total of 164, Why Were We Consulted?

Symptom management Pain Nausea/malignant bowel obstruction Shortness of breath Anxiety

Communication Conflict resolution (patient-family, family-staff) Goal setting

Process of care/transitions of care Complex discharge planning Understanding Hospice Care Benefit

Clinical Ethics That Guide Healthcare Providers

Beneficence (always do good) Malfeasance (do no harm) Autonomy (respect individual decision

making) Relational autonomy

Justice (distributive)

Other Ethical Principles• Respect for human life and death• Principle of therapeutic

proportionality• Principle of double effect

o Pain management and sedation• Truthfulness in communication

o Therapeutic privilege

Gather relevant data (e.g. through discussions with involved parties, examinations of medical records or other relevant documents)

Clarify relevant concepts (e.g. best interest, patient autonomy, informed consent)

Clarify related normative issues (e.g. personal and societal values, policy, norms)

Help identify a range of morally acceptable options within the context.

What does clinical ethics process accomplish?

Notes from the field

Communication Challenges When Delivering News

Sharing Bad News

Unfavorable news in the medical context has been defined as “any news that drastically and negatively alters the patient’s view of her or his future.”

Buckman R, How to Break Bad News

LC is a 65 y/o male with a previous medical history of Stage IV Lung adenocarcinoma with likely malignant effusion, PE, DVT, & neutropenia who was admitted with Atrial Flutter that has been unable to wean off a diltiazem drip. Followed by Dr. T in Shawnee, family requests continue seeing him. Palliative Medicine was consulted for "difficult hospice talk".

Studies on Communicating Prognosis

Doctors emphasize treatment and down play prognosis

Disclose actual beliefs 34% of the time

Withhold prognostic information from 25% of patients

Give deliberately optimistic estimate

Christakis NA. 1999

The Act of Prognostication

Formulation (or “foreseeing”) is the physician’s cognitive or objective estimate of the future course of the patient’s illness

Uninformed and certain Informed and uncertain

Affective forecasting

Communication (or “foretelling”) is the physicians discussion of the prediction with othersGlare and Sinclair, Journal of Palliative Medicine 2008

HOPE

Hope

Hope is a belief in a positive outcome related to events and circumstances in one’s life. Hope implies a certain amount of despair, wanting, wishing, suffering, or perseverance– i.e., believing that a better or positive outcome is possible even when there is some evidence to the contrary.

The Doctor, Sir Luke Fildes, 1891

“Hope is not found in a way out but a way through.”

-Robert Frost

CM is a 53 y/o female with a diagnosis of metastatic bladder cancer s/p cystectomy/ileal conduit. Patient was admitted for severe abdominal pain, nausea, and vomiting. She was found to have a UTI and subsequently treated. Pt has had progressive failure to thrive since admission and has had chronically low prealbumin. Patient is a poor candidate for chemotherapy secondary to poor functional status and patient desires aggressive continued care despite poor prognosis.

When there is no guidance

Mr. BA is a 62 year-old male who was admitted for care of low blood pressure and a gastrointestinal bleed. Complicating his care plan is a diagnosis of metastatic melanoma, with evidence that it has continued to progress, despite treatment efforts with multiple chemotherapy agents. Palliative Medicine was asked to visit with Barry to help with goals of care and the development of a care plan to best achieve these goals.

Consensus-Based Approach

Patient narratives Intense listening

What is said What is not said

Consensus building Converging narratives Diverging narratives

Prognosis Foreseeing the future Foretelling the future

Decision making Patient’s wishes Balance of burden and benefits

Karlawis JHT et al AIM.1999;130:835-840

Decision Making at The End of Life: The Ethical Grid

• Medical Indication• What are the facts of the medical history/condition?

• Patient Preference• Is the patient competent? Does he or she comprehend

the situation?

• Quality of Life• How might this be interpreted in the context of having a terminal

illness?• Contextual Features

• Whose other interest are affected?

Kuhl DR, JPM 1999(2); 75-86

The Core Principles with Which To Plan Palliative Care for Patients

Who Lack Decision –Making Capacity

Structure the decision-making as a consensus-building process grounded in dialogue among proxy, other close family members, physician, and immediate caregivers

The goal is to achieve consensus about the diagnosis and prognosis, the benefits and burdens of different treatment options; and the meaning of emotionally charged terms, such as “starvation,” “suffering,” “quality of life,” “feeding,” and “dying.”

Steps to Providing Palliative Care to Patients Who Lack Decision-Making Capacity

Identify the main participants in the decision making

Allow the participants to narrate how the patient has come to this stage of illness

Teach the decision makers about the expected clinical course of the patient’s disease

Advocate for the patient’s quality of life and dignity

Provide guidance on the basis of existing data and the clinical experience

Overview

Describe the changing landscape with regards to people living with serious life-limiting illnesses

Describe the challenges in delivering optimal care for people living with serious life-limiting illnesses

Discuss the role of clinical ethics that guide palliative care at the bedside

References Back, A., et al. (2009). Mastering communication with seriously ill patients : balancing

honesty with empathy and hope. Cambridge England New York, Cambridge University Press. Block, S. D. (2007). "Clinical and Ethical Issues in Palliative Care." Focus Vol V, No 4: 393-

397. Epstein, R. M. and R. L. Street, Jr. (2011). "Shared mind: communication, decision making,

and autonomy in serious illness." Ann Fam Med 9(5): 454-461. Faber-Langendoen, K. and P. N. Lanken (2000). "Dying patients in the intensive care unit:

forgoing treatment, maintaining care." Ann Intern Med 133(11): 886-893. Hallenbeck, J. (2003). Palliative care perspectives. Oxford ; New York, Oxford University

Press. Hallenbeck, J. L. (2000). "Terminal sedation: ethical implications in different situations." J

Palliat Med 3(3): 313-320. Karlawish, J. H., et al. (1999). "A consensus-based approach to providing palliative care to

patients who lack decision-making capacity. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine." Ann Intern Med 130(10): 835-840.

Kuhl, D. R. and P. Wilensky (1999). "Decision making at the end of life: a model using an ethical grid and principles of group process." J Palliat Med 2(1): 75-86.

Lo, B., et al. (1999). "Discussing palliative care with patients. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine." Ann Intern Med 130(9): 744-749.