Medical Interventions at the End of Life Life Sustaining Treatment and Other Decisions George J. Giokas, MD, Director for Palliative Care, The Community.

Medical Interventions at the End of Life

Life Sustaining Treatment and

Other Decisions

George J. Giokas, MD, Director for Palliative Care, The Community Hospice

Joanne Schlunk, MSW, Director, Mercy Hospice

Topics to be covered

Establishing goals of care Artificial nutrition and hydration Antibiotics in Advanced Dementia Pain Management at End of Life Dialysis – End Stage Renal Disease Mechanical Ventilation

CHE Palliative Care Champions Series

Palliative Care Across the Continuum of Illness: An Introduction to Palliative Care

Melissa Schepp, MD, FAAHPM, Director, Palliative Care, Saint Joseph’s Hospital

Pharmacological Pain Management: Opioids & Other Strategies Donato G. Dumlao, MD, Assistant Professor of Interdisciplinary Clinical Oncology,

University of South Alabama-Mitchell Cancer Institute

Symptom Management: Nausea, Dyspnea, & other SymptomsPatricia Ford, MD, Medical Director, The Community Hospice

Psychosocial Aspects of Palliative Care: Communication with Patients & FamiliesElizabeth Keene, MA, FT, Vice President, Mission Effectiveness, Saint Mary’s Health System, Lewiston, ME

Palliative Care Across the Health System: Different Settings & Levels of CareVictoria Christian-Baggott, MBA, RNC, CNHA, RAC-CT, C-NE Vice President, Clinical Improvement, Continuing Care Management Services Network, CHE

Benefit the patient’s assessment of the value or desirability of

the treatment’s result

Effectiveness the physician’s determination of the capacity of the treatment to alter the natural history of the of the

disease

Burden the cost, discomfort, pain, and inconvenience of the

treatmentphysician and patient

Edmund Pellegrino* JAMA 2/23/2000

What Do Patients with Serious Illness 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

D Meier , CAPC 2009

“What Bothers You Most?”

Univ of Rochester MC Palliative Care Service

44% Physical Distresspain, dyspnea, anorexia, paresthesias

16% Emotional, spiritual, existential, nonspecific distress depression, hopelessness, frustration, loneliness “What’s the point of all this?

15 % Interpersonal Relationshipsburden to family; Missing family activities,

milestonesFamily would have to make difficult decisions

Shah, et al, American Journal of Hospice Palliative Medicine, April/May 2008

“What Bothers You Most?”

15% Dying process “Just want to get this over with”Fear of future physical sufferingSense of not having enough time to do important things

12% loss of function and normalcyInability to eat and other bodily functionsImpossible to continue with work

11% concern regarding locationNot being home Being unable to leave hospital

9% Distress over medical providers or treatment“All these different doctors”Med side effect “I don’t like being sleepy”

End of Life Treatment Challenges

Momentum to Do Something Medically

Diagnostic UncertaintyLikely Multi-factorial - Underlying disease (s) /

complications / medicationsHow actively is this patient dying??Burden of diagnostic interventions

Burden of Treatments – including location

Transition from patient to family as focus of care

Symptom Management Challenges End of Life

Older age (two-thirds are age 65 years or older)

Malnutrition, low serum albumin

Frequent autonomic nervous system failure

Decreased renal function

Borderline cognition

Lower seizure threshold (metastatic brain involvement, use of opioids)

Long-term opioid therapy

Multiple drug therapy

Up to Date.com Accessed 12/2011

Key Points in End of Life Discussions

Is everybody on the same page regarding the patient’s condition & prognosis?

Focus on GOALS, then make a recommendation about treatments

Emphasize what you ARE doing… you never stop care, you only stop treatments

Weissman, Quill, & Arnold Fast Fact # 226 www.mcw.edu/eperc J

Provide information AND assess the family’s culture, communication and

decision-making patterns Identify significant stakeholders in the patient’s

survival their fears, their goals? Tend to emotions; respond with empathy not just facts

Respect the patient & families need for time & support 72 Hours Rousseau JAMA 2008

Key Points in End of LifeKey Points in End of Life DiscussionsDiscussions

J

“Do Everything”

Quill, Annals of Internal Medicine, 2009

When did the choices get so hard

With so much more at stake?

Life gets mighty precious,When there’s less of it to waste

Bonnie Raitt

Quill, Annals of Internal Medicine, 2009

“Do EVERYTHING”

Quill, Annals of Internal Medicine, 2009

Time Limited Trials

Quill & Holloway JAMA Oct 5, 2011

“It is easy to lose sight of the fact that not eating

may be one of the many facets of the

dying process and not the cause”

Robert McCann, JAMA Oct 13, 1999

Not “dying of starvation”

Anorexia – loss of appetite & reduced caloric intake

Cachexia – involuntary weight loss of > 10% body weight – muscle, visceral protein catabolized early

Starvation – loss of weight with loss of fat – protein spared until late stage

Reidy, AAHPM August 2010

  Starvation Cachexia

Appetite Suppressed in late phase

Suppressed in early phase

Body mass index Not predictive of mortality

Predictive of mortality

Serum albumin Low in late phase Low in early phase

Cholesterol May remain normal Low

Total lymphocyte count

Low, responds to refeeding

Low, unresponsive to refeeding

Cytokines Little data Elevated

Inflammatory disease

Usually not present Present

Response to refeeding

Reversible Resistant

Thomas, D Clinics in Geriatric Medicine, 2002

Tube Feedings

in Advanced Dementia

Do NOTprevent pneumonia or other infections

improve the healing of pressure sores

improve the functional outcome of elderly institutionalized residents

ANH – potential harm

Increased use of restraints

Increased pulmonary secretions, pleural effusion, ascites, peripheral edema,

Increased urine output

Diarrhea

Localized skin irritation

Potential to divert attention away from the patient

Potential Benefits of IV hydration

Delirium

frequently accompanies end of life

distressing to patients and family

dehydration, drug accumulation

Bruera 2002 51 terminally cancer pts

1000 mls/day vs 100 mls/day

73% v. 49% improvement in hallucinations, myoclonus, fatigue and sedation

When used, consider time limited trial Ganzini, Palliative and Supportive Care, 2006

Benefits and Burdens of PEG Placement

Quality Collaborative Monroe County Medical Society Oct 2010www.compassionandsupport.org accessed 11/23/2011

Strategies for Family Care

Relieving Family Members’ Sense of Helplessness and Guilt “I know you did everything”

Providing Appropriate Information About Hydration and Nutrition at End of Life

Providing Emotional Support for Family Members Concerns

Relieving the Patient’s Symptoms

Yamagishi, JPSM, 2010

Antibiotics at end of life in patients with advanced

dementia (NH)Common Occurrence especially closer to death:

45% in last month (pneumonia)Chen J Am Geriatrics 2006 1 large Boston NH

42 % in last 2 weeks resp, gu, gi, skin; 41% parenteral

D’Agata & Mitchell Arch Int Med 2008 21 Boston NH’s

Associated with improved survival but NOT improved comfort

Givens, et al Arch Int Med 2010 22 Boston area NH’s

D’Agata & Mitchell Arch Int Med 2008

“Survival was prolonged among residents who received antimicrobial treatment compared with those who were untreated. At the same time, our findings suggest that treatment with antimicrobial agents does not improve the comfort of residents with advanced dementia who have pneumonia, and more aggressive care may be associated with greater discomfort.”

Givens, et al Archives of Internal Medicine 2010

“These observations underscore that advance care planning, before the onset of acute illness, is a critical, modifiable factor in promoting palliation

in advanced dementia.”Chen JAGS 2006

Antibiotics at End of LifeBenefits

• life prolongation

• ?? comfort

• ? improvement in confusion – less likely beneficial as closer to death

Burdens• superinfections – yeast,

C Diff• IV site – infiltration,

bleeding, phlebitis• transfer to another

location – agitation, discontinuity

• prolongation of dying process

• promotion of antibiotic resistance

Percent of Patients with Moderate to Severe Symptoms Last 6 monthsIn Patients with Terminal Cancer

Seow, et al J Clinical Oncology 2001 as reported in Up to Date.com accessed 12/2011

Pain Management at End of Life

• Most critical starting point is assessment & reassessment

• Important to vary terms used, i.e. pain, discomfort, hurt

• Assess at different times of day & in different circumstances

• Include visual cues as well as caregiver observations

J

Assessing PainNociceptive – intact nervous system

Somatic-painVisceral

Neuropathic – damaged nervous system

Pre-existent / Chronic pain syndrome(s) +/or New pain

If I were this patient, would I be in pain?

Is this delirium ? ?Opioid neuro-toxicity

Non-pharmacological Interventions

• Relaxation

• Guided imagery

• Positioning

• Massage (if tolerated)

• Acupuncture

• Heat/Cold packs

J

When the Patient is Actively Dying

Education of caregivers regarding specifics is essential to ensure they understand what is “normal”

Educate re:Temperature changesBreathing changes Sensing pre-deceased loved ones/reaching upGlazed eyesMottlingApneaRestlessnessSecretionsWithdrawal

J

Teaching Caregiver Signs of Distress versus Signs of Comfort

Distress:Furrowed brow, restlessness, tightly gripping loved ones

or covers, groaning

Comfort:Brow relaxed, hands relaxed, minimal or no

restlessness, look of peace

Reassure family that sound and irregularity of breathing does not necessarily indicate discomfort

J

Stages Of Man ?

2011 US Renal Data System

38% Diabetes 24% Hypertension 15% Glomerulonephritis

Age of Prevalent ESRD Patients

American Nephrology Nurses Association

Annual rate (23%) or > 70,000 deaths

High percentage of co-morbidities

High in-hospital deaths

8% CPR survival to hospital discharge

High Mortality Rate

Coordination of Hospice and Palliative Care in ESRD. Module 4ANNA and Kidney end-of-Life Coalition accessed 8/2011

Dialysis in Frail Elders

US Nursing Home residents starting dialysis

6/98-10/2000 pre-dialysis function known

1st year 58% residents died

29% decrease in functional status

13% maintained functional status

Lower odds for maintaining status

Cerebrovascular disease, dementia, dialysis started during hospitalization, low albumin

Tamura, Kovinsky, et al NEJM October 2009

Advanced age >/= 75 years

Comorbidities modified Charleston Morbidity score >/= 8

Marked functional impairment Karnofsky performance status score < 40

Severe chronic malnutrition serum albumin level < 2.5 g/dL

Predictors of Poor Prognosis for ESRD Patients

Coordination of Hospice and Palliative Care in ESRD. Module 4ANNA and Kidney end-of-Life Coalition accessed 8/2011

Charleston Comorbidity Index

1 point1 point MI, CHF, PVD, CVA, MI, CHF, PVD, CVA,

Dementia, COPD, PUD,Dementia, COPD, PUD,

Mild liver diseaseMild liver disease

2 points2 points Mod-severe CKD, CA w/o metsMod-severe CKD, CA w/o mets

DM with end-organ damageDM with end-organ damage

3 points3 points Mod-severe liver diseaseMod-severe liver disease

6 points6 points Metastatic solid CAMetastatic solid CA

AIDSAIDS

1 point1 point Each decade in age > 40 yearsEach decade in age > 40 years

Coordination of Hospice and Palliative Care in ESRD. Module 4ANNA and Kidney end-of-Life Coalition accessed 8/2011

Low Low scorescore

Mod Mod ScoreScore

High High ScoreScore

Very High Very High ScoreScore

CCI PointsCCI Points ≤≤33 4-54-5 6-76-7 ≥≥88

Mortality (per Mortality (per pt-yr)pt-yr)

0.030.03 0.130.13 0.270.27 0.490.49

Prognosis from CCI

Median Survival < 6 months

ESRD on dialysis with age > 70 and 2 of the following:

Karnofsky < 50 or dependency in ADLs CAD, PVD, CHF, or cancer BMI < 19.5 or albumin < 2.2 mg/dl Residence in SNF ICU admission Hip fx with inability to ambulate

Salpeter, Luo, et al American Journal of Medicine, October 2011

“Conservative therapy should be discussed, not as a last

resort when there is “nothing left to do,” but as a clear option that might be most

effective in promoting patient goals”

Arnold & Zeidel, NEJM Oct 15, 2009

“For patients with poor prognosis for long-term survival, such as those with advanced age, decreased functional

status, malnutrition, and co-morbidities, there is no evidence that

the initiation of dialysis prolongs survival compared to nondialytic

treatments”

Salpeter, Luo, et al American Journal of Medicine, October 2011

Consider forgoing dialysis for those with stage 5 CKD older than 75 with 2 or more poor prognostic indicators:MD would not be surprised if patient died within

the next yearHigh co-morbidity scoreLow performance score (Karnofsky < 40)Chronic malnutrition – albumin < 2.5

Or if dialysis cannot be done safely, Dementia or hypotension

Shared Decision-Making in the Appropriate Initiation of and Withdrawal From of Dialysis. Clinical Practice Guideline 2nd edition. Renal Physicians Association, October 2010

Withdrawal of Dialysis

Catalano C et al, Withdrawal of renal replacement therapy in Newcastle upon Tyne: 1964-1993. Nephrol Dial Transplant. 1996 Jan;11(1):133-9.

n = 88

Median survival = 8 days

2009 Dialysis Deaths

Utilization of Hospice in ESRD

Patients Number (%)Number (%)

Using HospiceWithdrew

from Dialysis

20,854 (26) 13,502 (65)

Continued Dialysis

59,032 (74) 3,410 (6)

TOTAL 79,886 (100) 16,912 (21)

Shared Decision-Making in the Appropriate Initiation of and Withdrawal From of Dialysis. Clinical Practice Guideline 2nd edition. Renal Physicians Association, October 2010

Withdrawal of Dialysis – Palliative Issues in Ensuring Comfort

Communication

Anticipate and treat symptoms early

Pain (generally only if a pre-existing problem)

Nausea

Restlessness, confusion

Dyspnea – fluid balance, pneumonia

Pruritus

Myoclonus, twitching

Shared Decision-Making in the Appropriate Initiation of and Withdrawal From of Dialysis. Clinical Practice Guideline 2nd edition. Renal Physicians Association, October 2010

Percent of Decedents Admitted to ICU/CCU During the Hospitalization in Which Death Occurred

2007 Medicare Patients

548,000 1999712,000 2006

2006 98% Mech Vent for medical causes, not surgical

15 university affiliated med-surg ICUs across Canada, US, Australia, Sweden age > 18 851 patients receiving mechanical ventilation and expected to stay in ICU at least 72 hours 64 % were successfully weaned 36% died in the ICU approx ½ of those who died had mechanical ventilation withdrawn in anticipation of death

Ventilator Withdrawal Protocol

Address pressors, artificial hydration and feeding, dialysis, antibiotics, etc.

Who should be present, prayer/gathering before removal?Discontinue paralytics and test for return of neuromuscular

function Pre-medication for sedation

Morphine 2-10 mg IV and start a continuous infusion1 to 2 mg of midazolam IV (or lorazepamTitrate to the desired state of sedation prior to extubationHave additional medication drawn up and ready

Silence all ventilator alarms, O2 monitors, telemetryExtubate or attach T-piece, remove NG/OGTubes

Source: GUIDELINES FOR PHYSICIAN STAFF FROEDERT HOSPITAL, MILWAUKEE, WISCONSIN

as posted on IPAL-ICU project capc.org

Determinants of health care workers of the decision to withdraw life support

1300 Canadian ICU MDs & nurses 12 scenarios

Most important factors werelikelihood of surviving the current episodelikelihood of long-term survivalpremorbid cognitive functionage of the patient

Lack of consensusIn only ONE of 12 scenarios was the same option was

chosen by > 50% Opposite extremes of care chosen by > 10% in 8 of 12

scenariosCook, DJ et al JAMA 1995

“First, not only do our patients often have different

values and belief systems from our own, but so do our health-care team colleagues. Not to accept this fact undermines our ability to communicate effectively with patients, families, loved ones,

surrogates, and colleagues. Second, when we feel strongly about the right or

wrong medical decision for a patient in the ICU, we should have insight into our own fallibility and

the probability that equally competent health professionals, because of different values and belief systems, might completely disagree with

our approach.”

Thomas Raffin, MD JAMA 1995

Selected Bibliography

Pellegrino, E. Decisions to Withdraw Life-Sustaining Treatment. JAMA; 283, 2000: 1065-1067

Rosielle, D. Fast Facts. End of Life / Palliative Resource Education Center. Medical College of Wisconsinhttp://www.eperc.mcw.edu/EPERC/FastFactsIndex

Rousseau, P Seventy Hours.  JAMA. 300, 2008: 882-883

Quill, TE et al. Discussing Treatment Preferences With Patients Who Want “Everything” Annals of Internal Medicine: 151, 2009:345-349.

Quill & Holloway, Time Limited Trials JAMA. 2011; 306:1483-1484

Shah, et al “What Bothers You the Most?” Initial Responses From Patients Receiving Palliative Care Consultation. AM J HOSP PALLIAT CARE 2008; 25: 88-92

Singer, et al. Quality End of Life Care: Patients’ Perspectives. JAMA 1999;281(2):163-168

Ganzini, L. Artificial nutrition and Hydration at the End of Life; Ethics and Evidence. Palliative and Supportive Care: 4, 2006; 135-143

Mitchell, S, et. al. The Risk Factors and Impact on Survival of Feeding Tube Placement in Nursing Home Residents with Severe Cognitive Impairment. Archives of Internal Medicine: 157, 1997;327-332. 

Quality Collaborative Monroe County Medical Society. Benefits and Burdens of PEG Placement. www.compassionandsupport.org accessed 11/23/2011

Palecek, Teno, et al. Comfort Feeding Only: A Proposal to Bring Clarity to Decision-Making Regarding

Difficulty with Eating for Persons with Advanced Dementia. J Am Geriatr Soc 58:580–584, 2010

Sanders, A. The Clinical Reality of Artificial Nutrition and Hydration for Patients at the End of Life. The National Catholic Bioethics Quarterly. Summer 2009

Yamagishi, A et. al. The Care Strategy for Families of Terminal Ill Cancer Patients Who Become Unable to Take Nourishment Orally: Recommendations from a Nationwide Survey of Bereaved Family Members Experiences. Journal of Pain and Symptom Management: 40, 2010: 671-683.

ICU-IPAL Project www.capc.org

Cook, D et al. Withdrawal of Mechanical Ventilation in Anticipation of Death in the Intensive Care Unit. NEJM: 342:12, 2003; 1123-1132

Cook, D.J., Guyatt, G.H., and Jaeschke, R. "Determinants in Canadian Health Care Workers of the Decision to Withdraw Life Support." JAMA 273 (1995): 738-739

RPA/ASN’s “Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis, 2nd

Edition” ww.renalmd.org

Arnold and Zeidel. Dialysis in Frail Elders - A Role for Palliative Care. NEJM, 2009; 361:1597-1598

Cohen LM, Ruthazer R, Moss AH, Germain MJ. Predicting six month mortality for patients who are on maintenance hemodialysis. Clinics of Journal of the American Society of Nephrolology. 2010: 5:72-79

Dash and Mailloux Withdrawing and Withholding of Dialysis. Up to Date. Accessed October 2011

Johnson and Gustin. Acute Renal Failure Requiring Renal Replacement Therapy in the Intensive Care Unit. Journal of Palliative Medicine. 2011; 14: 883-889

Tamura, Kovinsky, et. al. Functional Status of Elderly Patients before and after Initiation of Dialysis . NEJM 2009; 361:1539-1547

Salpeter, Luo, et al. Systematic Review of Noncancer Presentations with a Medial Survival of 6 Months or Less. American Journal of Medicine. 2011. 32:22-31

Chen, et al. Occurrence and Treatment of Suspected Pneumonia in Long-Term Care Residents with Advanced Dementia. JAGS. 54: 2006; 290-295.

D’Agata et al. Patterns of Antimicrobial Use Among Nursing Residents with Advanced Dementia. Arch Intern Med. 2008:168; 357- 362.

Givens, et al. Survival and Comfort After Treatment of Pneumonia in Advanced Dementia. Arch Intern Med. 201: 170; 1102-1107. White, Jocelyn ed. JPM Patient Education: Infections and Use of Antibiotics in Dying Patients. Journal of Palliative Medicine. 2006. Volume 9 Number 1.