Medical Interventions at the End of Life Life Sustaining Treatment and Other Decisions

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Medical Interventions at the End of LifeLife
Sustaining Treatment and Other Decisions
George J. Giokas, MD, Director for Palliative
Care, The Community Hospice Joanne Schlunk, MSW,
Director, Mercy Hospice
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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
  
  

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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 Josephs 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
  Symptoms
• Patricia Ford, MD, Medical Director, The
  Community Hospice
• Psychosocial Aspects of Palliative
  Care Communication with Patients Families
• Elizabeth Keene, MA, FT, Vice President, Mission
  Effectiveness, Saint Marys Health System,
  Lewiston, ME
• Palliative Care Across the Health System
  Different Settings Levels of Care
• Victoria Christian-Baggott, MBA, RNC, CNHA,
  RAC-CT, C-NE Vice President, Clinical
  Improvement, Continuing Care Management Services
  Network, CHE

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• Benefit
• the patients assessment of the value or
  desirability of the treatments result
• Effectiveness
• the physicians 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 treatment
• physician and patient
• 
  Edmund Pellegrino JAMA 2/23/2000
• 
  

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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 1999281(2)163-168 D Meier ,
CAPC 2009
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What Bothers You Most?

• Univ of Rochester MC Palliative Care Service
• 44 Physical Distress
• pain, dyspnea, anorexia, paresthesias
• 16 Emotional, spiritual, existential,
  nonspecific distress
• depression, hopelessness, frustration,
  loneliness
• Whats the point of all this?
• 15 Interpersonal Relationships
• burden to family Missing family activities,
  milestones
• Family would have to make difficult decisions

Shah, et al, American Journal of Hospice
Palliative Medicine, April/May 2008
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What Bothers You Most?

• 15 Dying process Just want to get this over
  with
• Fear of future physical suffering
• Sense of not having enough time to do important
  things
• 12 loss of function and normalcy
• Inability to eat and other bodily functions
• Impossible to continue with work
• 11 concern regarding location
• Not being home Being unable to leave hospital
• 9 Distress over medical providers or treatment
• All these different doctors
• Med side effect I dont like being sleepy

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End of Life Treatment Challenges

• Momentum to Do Something Medically
• Diagnostic Uncertainty
• Likely Multi-factorial - Underlying disease (s) /
  complications / medications
• How actively is this patient dying??
• Burden of diagnostic interventions
• Burden of Treatments including location
• Transition from patient to family as focus of
  care

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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
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Key Points in End of Life Discussions

• Is everybody on the same page regarding the
  patients 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
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Key Points in End of Life Discussions

• Provide information AND
• assess the familys culture, communication and
  decision-making patterns
• Identify significant stakeholders in the
  patients 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

J
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Do Everything
Quill, Annals of Internal Medicine, 2009
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• When did the choices
• get so hard
• With so much more at stake?
• Life gets mighty precious,
• When theres less of it to waste
  
• 
  Bonnie Raitt

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Do EVERYTHING
Quill, Annals of Internal Medicine, 2009
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Quill, Annals of Internal Medicine, 2009
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Time Limited Trials
Quill Holloway JAMA Oct 5, 2011
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• 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
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Not dying of starvation

• Anorexia loss of appetite reduced caloric
  intake
• Cachexia involuntary weight loss of gt 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
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  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
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• Tube Feedings
• in Advanced Dementia
• Do NOT
• prevent pneumonia or other infections
• improve the healing of pressure sores
• improve the functional outcome of elderly
  institutionalized residents

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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

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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
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Benefits and Burdens of PEG Placement
Quality Collaborative Monroe County Medical
Society Oct 2010 www.compassionandsupport.org
accessed 11/23/2011
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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 Patients Symptoms

Yamagishi, JPSM, 2010
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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
• DAgata Mitchell Arch Int Med 2008
  21 Boston NHs
• Associated with improved survival but NOT
  improved comfort
• Givens, et al Arch Int Med 2010
  22 Boston area NHs

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DAgata Mitchell Arch Int Med 2008
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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
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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
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Antibiotics at End of Life

• Burdens
• superinfections yeast, C Diff
• IV site infiltration, bleeding, phlebitis
• transfer to another location agitation,
  discontinuity
• prolongation of dying process
• promotion of antibiotic resistance

• Benefits
• life prolongation
• ?? comfort
• ? improvement in confusion less likely
  beneficial as closer to death

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Percent of Patients with Moderate to Severe
Symptoms Last 6 months In Patients with Terminal
Cancer
Seow, et al J Clinical Oncology 2001 as reported
in Up to Date.com accessed 12/2011
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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
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Assessing Pain

• Nociceptive intact nervous system
• Somatic-pain
• Visceral
• 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

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Non-pharmacological Interventions

• Relaxation
• Guided imagery
• Positioning
• Massage (if tolerated)
• Acupuncture
• Heat/Cold packs

J
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When the Patient is Actively Dying

• Education of caregivers regarding specifics is
  essential to ensure they understand what is
  normal
• Educate re
• Temperature changes
• Breathing changes
• Sensing pre-deceased loved ones/reaching up
• Glazed eyes
• Mottling
• Apnea
• Restlessness
• Secretions
• Withdrawal

J
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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
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Stages Of Man ?
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2011 US Renal Data System
38 Diabetes 24 Hypertension 15
Glomerulonephritis
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Age of Prevalent ESRD Patients
American Nephrology Nurses Association
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High Mortality Rate

• Annual rate (23) or gt 70,000 deaths
• High percentage of co-morbidities
• High in-hospital deaths
• 8 CPR survival to hospital discharge

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

• Advanced age gt/ 75 years
• Comorbidities
• modified Charleston Morbidity score gt/ 8
• Marked functional impairment
• Karnofsky performance status score lt 40
• Severe chronic malnutrition
• serum albumin level lt 2.5 g/dL

Coordination of Hospice and Palliative Care in
ESRD. Module 4 ANNA and Kidney end-of-Life
Coalition accessed 8/2011
43
Charleston Comorbidity Index
1 point MI, CHF, PVD, CVA,
1 point Dementia, COPD, PUD,
1 point Mild liver disease
2 points Mod-severe CKD, CA w/o mets
2 points DM with end-organ damage
3 points Mod-severe liver disease
6 points Metastatic solid CA
6 points AIDS
1 point Each decade in age gt 40 years
Prognosis from CCI
Low score Mod Score High Score Very High Score
CCI Points 3 4-5 6-7 8
Mortality (per pt-yr) 0.03 0.13 0.27 0.49
Coordination of Hospice and Palliative Care in
ESRD. Module 4 ANNA and Kidney end-of-Life
Coalition accessed 8/2011
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Median Survival lt 6 months

• ESRD on dialysis with age gt 70 and 2 of the
  following
• Karnofsky lt 50 or dependency in ADLs
• CAD, PVD, CHF, or cancer
• BMI lt 19.5 or albumin lt 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
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• 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
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• 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
47

• 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 year
• High co-morbidity score
• Low performance score (Karnofsky lt 40)
• Chronic malnutrition albumin lt 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
48
Withdrawal of Dialysis
n 88 Median survival 8 days
Catalano C et al, Withdrawal of renal replacement
therapy in Newcastle upon Tyne 1964-1993.
Nephrol Dial Transplant. 1996 Jan11(1)133-9.
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Utilization of Hospice in ESRD

• 2009 Dialysis Deaths

Patients Number () Number () Using Hospice
Withdrew 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
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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
51
Percent of Decedents Admitted to ICU/CCU During
the Hospitalization in Which Death Occurred
2007 Medicare Patients
52
548,000 1999 712,000 2006
2006 98 Mech Vent for medical causes, not
surgical
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15 university affiliated med-surg ICUs across
Canada, US, Australia, Sweden age gt 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
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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
  infusion
• 1 to 2 mg of midazolam IV (or lorazepam
• Titrate to the desired state of sedation prior
  to extubation
• Have additional medication drawn up and ready
• Silence all ventilator alarms, O2 monitors,
  telemetry
• Extubate or attach T-piece, remove NG/OGTubes

Source GUIDELINES FOR PHYSICIAN STAFF FROEDERT
HOSPITAL, MILWAUKEE, WISCONSIN as posted on
IPAL-ICU project capc.org
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Determinants of health care workers of the
decision to withdraw life support

• 1300 Canadian ICU MDs nurses 12 scenarios
• Most important factors were
• likelihood of surviving the current episode
• likelihood of long-term survival
• premorbid cognitive function
• age of the patient
• Lack of consensus
• In only ONE of 12 scenarios was the same option
  was chosen by gt 50
• Opposite extremes of care chosen by gt 10 in 8 of
  12 scenarios

Cook, DJ et al JAMA 1995
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• 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
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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
Wisconsin http//www.eperc.mcw.edu/EPERC/FastFacts
Index 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, 2009345-349. Quill
Holloway, Time Limited Trials JAMA. 2011
3061483-1484 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 1999281(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,
1997327-332.  Quality Collaborative Monroe
County Medical Society. Benefits and Burdens of
PEG Placement. www.compassionandsupport.org
accessed 11/23/2011
60

• 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 58580584,
  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 34212, 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/ASNs Shared Decision-Making in the
  Appropriate Initiation of and Withdrawal from
  Dialysis, 2nd Edition ww.renalmd.org

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Tamura, Kovinsky, et. al. Functional
Status of Elderly Patients before and after
Initiation of Dialysis . NEJM 2009 3611539-1547
Salpeter, Luo, et al. Systematic Review of
Noncancer Presentations with a Medial Survival of
6 Months or Less. American Journal of Medicine.
2011. 3222-31 Chen, et al. Occurrence
and Treatment of Suspected Pneumonia in Long-Term
Care Residents with Advanced Dementia. JAGS. 54
2006 290-295. DAgata et al. Patterns of
Antimicrobial Use Among Nursing Residents with
Advanced Dementia. Arch Intern Med. 2008168
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.