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