Transcript Straight talk about palliative care: What everyone should

Straight talk about palliative care:
What everyone should know
Amber Chancelor, RN MSN
Jacob Graham, MD
Palliative and Supportive Care
Forrest General Hospital
Outline
1. General palliative care
2. Palliative care in advanced dementia
3. Goals of care conversations/communication
at end of life
I. GENERAL PALLIATIVE CARE
Outline
1. General PC:
– Who? What? Where? When? Why? How?
2. Our experience
Goals/objectives
1.
2.
3.
4.
5.
PC definition
PC vs hospice
“Primary” vs specialist PC
Financial argument
Quality of life argument
Pre-test Q1
• When is palliative care appropriate?
A. When a life-threatening illness is diagnosed
and before decisions have been made about
treatment
B. When curative/life-prolonging treatment for a
life-threatening illness is ongoing
C. When curative/life-prolonging treatment for a
life-threatening illness is not a helpful option
D. When the patient likely has <6 months to live
E. All of the above
Pre-test Q2
• Where is palliative care appropriate?
A. Hospital
B. LTACH
C. Clinic
D. Home
E. Nursing home
F. At least 2 of these
G. All of the above
Pre-test Q3
• For a patient to be followed by our palliative
and supportive care service, they must be:
A. DNR
B. Comfort care only
C. Able to communicate
D. Symptomatic
E. At the end of life
F. None of the above
What does “palliative care”
make you think of?
Quality
• As defined by the Institute of Medicine:
“The degree to which health services for
individuals and population increase the
likelihood of desired health outcomes and are
consistent with current professional knowledge”
• Do we know our patients’ “desired health
outcomes”?
• Is PC evidence-based?
End-of-life care as usual
https://www.youtube.com/watch?v=tdj6_ZXTS
mA&feature=player_detailpage
Palliative care
• Specialized medical care for people living with
serious illness
• Focus: relief from the symptoms and stress of
a serious illness—whatever the diagnosis
• Goal: quality of life for both the patient and
the family
Center to Advance Palliative Care. https://www.capc.org/about/palliative-care/.
Who benefits from palliative care?
• People with serious, often life-threatening
illness and their loved ones
Palliative
Care
Hospice
Non-hospice
palliative care
“Palli-what??” Palliative care…
IS
• A philosophy of care
• Focused on all domains
of suffering
• Best utilized early in lifelimiting illness
IS NOT
• A treatment modality
• Restricted to pain
management
• Only for EOL
• Interventions performed:
– Symptom control
– Goals of care discussions
“Primary” palliative care
• Core elements of PC:
– Basic management of symptoms
– Basic discussions about:
• prognosis
• goals of treatment
• code status
Quill TE, Abernathy AP. Generalist plus specialist palliative care—creating a more sustainable model. N Engl J Med.
March 28, 2013;368(13):1173-1175.
Specialist palliative care
• Refractory symptoms
• Complex depression, anxiety, grief, and
existential distress
• Conflict resolution:
– within families
– between staff and families
– among treatment teams
• Assistance in cases of near futility
How is specialist palliative care provided?
• Patients/families require expertise of several
disciplines
• Interdisciplinary team:
– Specialist providers
– Nurses
– Pharmacists
– Social workers
– Chaplains
– Therapy staff
Grant M, Dy SM. Palliative care delivery models. UNIPAC 1: The Hospice and Palliative Care Approach to Serious Illness.
4th ed. Glenview, IL: American Academy of Hospice and Palliative Medicine; 2012.
Where is PC provided?
•
•
•
•
•
•
*
Hospital
Long term acute care hospital
Rehab
Clinic
Home
*
Nursing home *
Hospice…also pre-hospice palliative care
When is it indicated?
• Anywhere along the disease trajectory
• Ideally at diagnosis of serious, life-threatening
illness
Meyers FJ, Linder J. Simultaneous care: disease treatment and palliative care throughout illness. J Clin Oncol. Apr 1
2003;21(7):1412-1415.
Illness trajectories
Lynn J, Adamson DM. Living Well at the End of Life: Adapting Health Care to Serious Chronic Illness in Old Age. Santa
Monica, CA: RAND; 2003. http://www.rand.org/ content/dam/rand/pubs/white_papers/2005/WP137.pdf. Accessed
11/7/13.
Rapid decline
• Patient quotes: “My cancer can be treated” + “I’m
doing well”
• Greatest needs: Understand prognosis, establish goals,
avoid treatment inertia, set limits early
Gradual decline + exacerbations
• Patient quotes: “I’m getting better” + “CPR and life support can
help me—of course I want to live!”
• Greatest needs: Realistic (not TV!) understanding of CPR and life
support, physician guidance to weigh benefits versus burdens of
hospitalization, establishment of desired place of death
Prolonged decline
• Family quote: “He’s not dying; he just has dementia and aspiration
pneumonia”
• Greatest needs: Understand the terminal nature of advanced
dementia, recognize the burdens of aggressive care/hospitalization,
avoid feeding tubes
The “surprise” question
• “Would I be surprised if this patient died in
the next year?”
• If not, begin goals of care discussions, and
consider a PC referral
• https://www.youtube.com/watch?v=-SzAkWB8-s&feature=player_detailpage
Why PC in serious illness?
Prognosis
communicated
and accepted
Wishes
consistent
with prognosis
Treatment
consistent
with wishes
• RCT comparing palliative care + standard oncology to
standard oncology alone
• 151 patients with newly diagnosed metastatic NSCLC
2010;363(8):733-742.
• Early palliative care →
– better quality of life
– less depression
(16% vs. 38%)
– less aggressive EOL care
(33% vs. 54%)
– higher hospice
enrollment > 1 week
(60% vs. 33.3%)
– longer median survival
(11.6 vs. 8.9 months;
P = 0.02)
Greer JA, Pirl WF, Jackson VA, et al. Effect of early palliative care on chemotherapy use and end-of-life care in
patients with metastatic non-small-cell lung cancer. J Clin Oncol. 2012 Feb 1;30(4):394-400.
Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer.
N Engl J Med. 2010;363(8):733-742.
Benefits to patients
• Systematic review of palliative care in cancer:
8 RCTs and 32 other studies
• Specialized palliative care:
– improved pain/symptom control
– reduced hospital admissions
Higginson IJ, Evans CJ. What is the evidence that palliative care teams improve outcomes for cancer patients and
their families? Cancer J. Sep-Oct 2010;16(5):423-435.
Benefits to families
• Systematic review of palliative care in all
populations: 22 RCTs
• Specialized palliative care improved family
satisfaction
Zimmermann C, Riechelmann R, Krzyzanowska M, Rodin G, Tannock I. Effectiveness of specialized palliative care: a
systematic review. JAMA. Apr 9 2008;299(14):1698-1709.
Benefits to clinicians
• As many as 45% of nurses consider leaving
jobs because of moral distress
• Aligns patient/family goals with the care
delivered, reducing stress and burnout
Perrin KO, Kazanowski M. Overcoming barriers to palliative care consultation. Crit Care Nurse. 2015;35(5):44-51.
Improved patient care experience
Gade G, Venohr I, Conner D, et al. Impact of an inpatient palliative care team: a randomized control trial. J Palliat
Med. 2008 Mar;11(2):180-190.
Why not palliative care?
• “Would not referring my patient to palliative
care indicate a lack of hope?”
• > 90% of Americans react favorably to
palliative care emphasized as “an extra layer
of support” appropriate at “any stage in
serious illness”
2011 Public opinion research on palliative care: a report based on research by public opinion strategies. New York:
Center to Advance Palliative Care, 2011.
Survival benefit?
•
•
•
•
4493 Medicare patients
5 cancers + congestive heart failure
Mean survival 29 days longer with hospice
P < 0.05 for:
– congestive heart failure (402 vs. 321 days)
– lung cancer (279 vs. 240 days)
– pancreatic cancer (210 vs. 189 days)
Connor SR, Pyenson, B, Fitch K, et al. Comparing hospice and nonhospice patient survival among patients who die
within a three-year window. J Pain Symptom Manage. 2007;33:238-246.
How does palliative care prolong life?
• Avoiding hazards of aggressive medical
treatment
• Improving symptom control and function
• Improving psychosocial support
Pyenson B, Connor S, Fitch K, Kinzbrunner B. Medicare cost in matched hospice and non-hospice cohorts. J Pain
Symptom Manage. 2004;28:200-210.
Connor SR, Pyenson, B, Fitch K, et al. Comparing hospice and nonhospice patient survival among patients who die
within a three-year window. J Pain Symptom Manage. 2007;33:238-246.
Palliative care: Why now?
• 3 trends:
– Availability of life-prolonging treatments
– Fragmentation of healthcare
– Paternalism → autonomy
Dying in America
• 1996 Gallup survey
• Terminally ill / ≤6 months to live:
– 88% of Americans prefer care and death at home
– 76% die in healthcare institutions
National Hospice Organization. Hospice awareness campaign “handle with care” needs your participation. NHO
Newsline. 1996;7(15):1.
Gruneir A, Mor V, Weitzen S, et al. Where people die: a multilevel approach to understanding influences on site of death
in America. Med Care Res Rev. 2007;64(4):351-378.
Medicare expenditures: last year of life
• Claims data on 5% sample from 1978-2006
• Hospice benefit: 1983
1978
2006
Share of payments
in last year of life
28.3%
25.1%
Hospitalizations
in last 2-3 months
~63%
~63%
Multiple
hospitalizations
in last 2-3 months
20.3%
27.0%
ICU/CCU
in last 2-3 months
26.1% (in 1983)
33.1%
Riley GF, Lubitz JD. Long-term trends in Medicare payments in the last year of life. Health Serv Res. 2010
Apr;45(2):565-576.
Does hospital palliative care save money?
• 8 hospitals
• 2002-2004
Discharged
Died
Palliative care patients
2630
2278
Usual care patients
18,427
2124
Discharged
Died
Direct costs per day
$174 saved
$374 saved
Direct costs per admission
$1696 saved
$4908 saved
Morrison RS, Penrod JD, Cassel JB, et al. Cost savings associated with US hospital palliative care consultation programs.
Arch Intern Med. 2008;168(16):1783-1790.
For an average 400-bed hospital…
• Seeing 500 patients per
year (300 live discharges,
200 deaths)
• → Net savings of
$1.3M/year after adding
physician revenues and
subtracting personnel
costs
How does palliative care reduce costs?
• Palliative care consultation fundamentally
shifts the course of care:
• Updated from 2011
• Reports access to
specialist PC
• Collaboration:
– Center to Advance
Palliative Care
(CAPC)
– National Palliative
Care Research
Center (NPCRC)
https://reportcard.capc.org/. Accessed 7/4/16.
Key findings
• The nation gets a B:
– 67% of U.S. hospitals report PC teams
• Most large hospitals offer PC services:
– 90% of hospitals with 300+ beds, with variability
by region
• Varies by region:
– The south central region is most in need of
improvement
U.S. by region
East South Central region
Our consult volume by month
Actual Consults
Annual Volume (Projected)
1400
1200
1144
1000
1000
984
1016
979
998
938
954
800
600
400
Program start-up
200
37
0
51
70
88
85
73
86
82
85
60
83
Penetration rates based on
20,000 admissions per year
7.00%
6.00%
5.00%
4.00%
3.00%
2.00%
1.00%
5.72%
5.00%
4.92%
5.08%
4.90%
4.99%
4.69%
4.77%
Per CAPC:
Year 1 goal 2%
Year 2 goal 4%
Year 3 goal 6%
Overall goal 10%
0.00%
November December January February
March
April
May
June
ICU reductions central to savings
Patient location at time of consult
2.1%
Telemetry
27.2%
Telemetry
Rehab
Med/Surg
Post-partum
42.6% CCU/ICU
0.3%
LTACH
Oncology
20.7%
Med/Surg
3.4%3.7%
0.1%
CCU/ICU
ED
ICU consult example
• 59 y/o WM c COPD and R lung adenocarcinoma and
no metastatic dz
• Admitted 4/4/15
• R pneumonectomy performed
• Complications: tracheal transection, pneumonia,
inability to wean, airway leak 2/2 tracheal
perforation → debridement and patch repair,
inability to wean, another airway leak 2/2 tracheal
perforation
• → Transfer to Ochsner Medical Center 5/7/15 for
tracheal stenting
ICU consult example
• Readmitted 5/24/15, s/p tracheo-bronchial stenting
and Eloesser flap
• Chronic ventilator dependence and recurrent
pneumonias
• Weaned down to T-piece on 2 occasions but
deteriorated each time
• 9 bronchoscopies for washout
• PC consulted 9/3/15 (respiratory/hemodynamic
status stable)
• Discussed with family → extubation and death that
day
Floor consult example
• 85 y/o BM c Alzheimer dementia and CKD IV
admitted 12/8/15-12/11/15 with AMS 2/2
hypernatremia, dehydration, and renal failure
• Readmitted 1/3/16 with aspiration
pneumonia and renal failure
• PEG tube placed 2/2 poor PO intake
• Initiated on HD in hopes that mental status
would improve
Floor consult example
•
•
•
•
PC consulted 1/20/16
Talked on the phone with daughter in Virginia
She wanted time to talk with her aunt
Ready to discuss again 4 days later (1/25/16),
at which time patient aspirating tube feeds
• Decision made for comfort care only
• D/c’ed back to Hattiesburg Health and Rehab
with hospice on 1/26/16
In the nick of time
•
•
•
•
•
•
•
•
94 y/o BM c dementia
Admitted 2/22/16 with aspiration pneumonia
Speech therapy evaluation: not safe for PO
NG tube feedings initiated
PEG tube scheduled 2/25/16
PC consulted 2/25/16
Decision made to forgo PEG tube placement
D/c’ed back to The Myrtles with hospice 2/25/16
What is our “success” rate?
• Depends on how you define it:
– Determining goals of patient/family and trying to
achieve them?
– Shifting patient/family goals toward reality?
– Full code → DNR?
– Decreased ICU and hospital LOS?
– Better symptom control?
One way we document success
An average week (M-W, 7/11-13)
•
•
•
•
•
Seen by palliative care: 13 new, 7 follow-ups (15 patients)
Did plan of care change? 10 Y, 2 N, 3 P
Code status before consult: 10 Full, 5 DNR
Code status after consult: 2 Full, 13 DNR
8/10 full codes changed to DNR, 3 vent withdrawals followed by
death, 1 vent withdrawal followed by hospice, 7 total to hospice
Patient status at discharge
(786 consults)
34%
Alive
66%
Deceased
Disposition for live discharges
(507 consults)
2.2% 0.6% 0.2%
Hospice
5.1%
Home with home health
Home without services
23.7% Skilled
nursing unit/NH
Skilled nursing unit/NH
48.9% Hospice
LTACH
Rehab
4.5%
Acute hospital
14.8% Home
with home
health
Prison
A powerful case outside the hospital
Brumley R, Enguidanos S, Jamison P, et al. Increased satisfaction with care and lower costs: results of a randomized
trial of in-home palliative care. J Am Geriatr Soc. 2007 Jul;55(7):993-1000.
Reducing the boomerang effect
J Pain Symptom Manage. August 2013;46(2):254-264.
63
64
Conclusion: The case for palliative care
Post-test Q1
• When is palliative care appropriate?
A. When a life-threatening illness is diagnosed
and before decisions have been made about
treatment
B. When curative/life-prolonging treatment for a
life-threatening illness is ongoing
C. When curative/life-prolonging treatment for a
life-threatening illness is not a helpful option
D. When the patient likely has <6 months to live
E. All of the above
Post-test Q1
• When is palliative care appropriate?
A. When a life-threatening illness is diagnosed
and before decisions have been made about
treatment
B. When curative/life-prolonging treatment for a
life-threatening illness is ongoing
C. When curative/life-prolonging treatment for a
life-threatening illness is not a helpful option
D. When the patient likely has <6 months to live
E. All of the above
Post-test Q2
• Where is palliative care appropriate?
A. Hospital
B. LTACH
C. Clinic
D. Home
E. Nursing home
F. At least 2 of these
G. All of the above
Post-test Q2
• Where is palliative care appropriate?
A. Hospital
B. LTACH
C. Clinic
D. Home
E. Nursing home
F. At least 2 of these
G. All of the above
Post-test Q3
• For a patient to be followed by our palliative
and supportive care service, they must be:
A. DNR
B. Comfort care only
C. Able to communicate
D. Symptomatic
E. At the end of life
F. None of the above
Post-test Q3
• For a patient to be followed by our palliative
and supportive care service, they must be:
A. DNR
B. Comfort care only
C. Able to communicate
D. Symptomatic
E. At the end of life
F. None of the above
References
2011 Public opinion research on palliative care: a report based on research by public opinion
strategies. New York: Center to Advance Palliative Care, 2011.
America’s Care of Serious Illness: 2015 State-by-State Report Card on Access to Palliative Care in
our Nation’s Hospitals. https://reportcard.capc.org/. Accessed 7/4/16.
Brumley R, Enguidanos S, Jamison P, et al. Increased satisfaction with care and lower costs: results
of a randomized trial of in-home palliative care. J Am Geriatr Soc. 2007 Jul;55(7):993-1000.
Center to Advance Palliative Care. https://www.capc.org/about/palliative-care/. Accessed 9/1/15.
Connor SR, Pyenson, B, Fitch K, et al. Comparing hospice and nonhospice patient survival among
patients who die within a three-year window. J Pain Symptom Manage. 2007;33:238-246.
Gade G, Venohr I, Conner D, et al. Impact of an inpatient palliative care team: a randomized
control trial. J Palliat Med. 2008 Mar;11(2):180-190.
Grant M, Dy SM. Palliative care delivery models. UNIPAC 1: The Hospice and Palliative Care
Approach to Serious Illness. 4th ed. Glenview, IL: American Academy of Hospice and Palliative
Medicine; 2012.
Greer JA, Pirl WF, Jackson VA, et al. Effect of early palliative care on chemotherapy use and endof-life care in patients with metastatic non-small-cell lung cancer. J Clin Oncol. 2012 Feb
1;30(4):394-400.
Gruneir A, Mor V, Weitzen S, et al. Where people die: a multilevel approach to understanding
influences on site of death in America. Med Care Res Rev. 2007;64(4):351-378.
Higginson IJ, Evans CJ. What is the evidence that palliative care teams improve outcomes for
cancer patients and their families? Cancer J. Sep-Oct 2010;16(5):423-435.
Kamal AH, Currow DC, Ritchie CS, et al. Community-based palliative care: the natural evolution
for palliative care delivery in the U.S. J Pain Symptom Manage. 2013 Aug;46(2):254-264.
References
Lynn J, Adamson DM. Living Well at the End of Life: Adapting Health Care to Serious Chronic
Illness in Old Age. Santa Monica, CA: RAND; 2003.
http://www.rand.org/content/dam/rand/pubs/white_papers/2005/WP137.pdf. Accessed
11/7/13.
Meyers FJ, Linder J. Simultaneous care: disease treatment and palliative care throughout illness. J
Clin Oncol. Apr 1 2003;21(7):1412-1415.
Morrison RS, Penrod JD, Cassel JB, et al. Cost savings associated with US hospital palliative care
consultation programs. Arch Intern Med. 2008;168(16):1783-1790.
National Hospice Organization. Hospice awareness campaign “handle with care” needs your
participation. NHO Newsline. 1996;7(15):1.
Perrin KO, Kazanowski M. Overcoming barriers to palliative care consultation. Crit Care Nurse.
2015;35(5):44-51.
Pyenson B, Connor S, Fitch K, Kinzbrunner B. Medicare cost in matched hospice and non-hospice
cohorts. J Pain Symptom Manage. 2004;28:200-210.
Quill TE, Abernathy AP. Generalist plus specialist palliative care—creating a more sustainable
model. N Engl J Med. March 28, 2013;368(13):1173-1175.
Riley GF, Lubitz JD. Long-term trends in Medicare payments in the last year of life. Health Serv
Res. 2010 Apr;45(2):565-576.
Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic nonsmall-cell lung cancer. N Engl J Med. 2010;363(8):733-742.
Zimmermann C, Riechelmann R, Krzyzanowska M, Rodin G, Tannock I. Effectiveness of specialized
palliative care: a systematic review. JAMA. Apr 9 2008;299(14):1698-1709.
II. PC IN ADVANCED DEMENTIA
Dementia
1. Introduction
2. Artificial nutrition and hydration
3. Prognostication
4. Other palliative issues
• Progressive and incurable
• Focus on preserving dignity and quality of life
• Average life expectancy following diagnosis:
– 4-7 years
generally
– 6-7 years if
diagnosed in 60s
– < 2 years if
diagnosed in 90s
Israel J, Morrison RS. Geriatric palliative care. Principles and Practice of Palliative Care and Supportive Oncology. 4th
ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2013.
Shega JW, Levine SK. Dementia. UNIPAC 9: Caring for Patients with Chronic Illness: Dementia, COPD, and CHF. 4th ed.
Glenview, IL: American Academy of Hospice and Palliative Medicine; 2012.
Stages
• Early/Mild:
– Recognize, diagnose, and educate
– Advance care planning (specific topics)
– Cholinesterase inhibitors
• Moderate:
– Longest stage
– Safe environment, psychiatric symptom treatment,
caregiver support
– Memantine, low-dose antipsychotics
– Avoid benzodiazepines (paradoxical agitation,
excessive somnolence, falls), anticholinergics,
antihistamines
Advanced/Severe dementia
• Median survival rate for end-stage is 6 months:
– With or without tube feeding
– Wide range
• Bedbound and nonverbal
• Patients often receive nonpalliative interventions at EOL:
– Tube feeding
– CPR
– Mechanical ventilation
• Pain is overlooked and undertreated:
– More discomfort with routine procedures (e.g., vital signs,
fingersticks) because of lack of understanding
– Analgesic therapy should be empiric and preventive
(dressing changes, position changes)
• “There are profound disparities in advanced
dementia care…[O]utcomes considered
markers of poor-quality end-of-life care
include increased use of tube feeding,
terminal hospitalizations, and lack of advance
directives…[A]fter patient characteristics are
controlled for, these outcomes vary
dramatically across the United States in a
strikingly consistent pattern, with a general
propensity for worse quality of care in the
southeast.”
Mitchell SL, Black BS, Ersek M, et al. Advanced dementia: state of the art and priorities for the next decade. Ann
Intern Med. 2012 January 3;156(1):45-51.
Strategies to improve care
• Advance directives (for example, do-nothospitalize orders)
• Better counseling of health care proxies
• Residence in special care dementia units
• Use of hospice
• Presence of NPs on-site in a NH
Typical case
• 95 y/o BW c Alzheimer dementia (moderate
stage), HTN, DLD, admitted with poor
appetite, hallucinations, insomnia
• Palliative care consulted for medication
management
• Started on trazodone by hospitalist
• Discharge orders placed before consult seen
What kind of things did we address
(advance care planning)?
Decision aids
The Ottawa Hospital. https://decisionaid.ohri.ca/docs/das/Feeding_Options.pdf. Accessed 6/24/16.
Education in Palliative and End-of-Life Care (EPEC) for Geriatrics.
Eating and swallowing problems
• Hallmarks of end-stage dementia
• Exceedingly difficult conversations
• Clinicians are critical:
– Be knowledgeable about options
– Elicit goals of care
– Communicate effectively
– Compassionately guide decisions
General approach to feeding problems
• Address new medical issues:
– Infection
– Depression
– Constipation
– Medication side effect
• Simple measures to increase intake:
– One food at a time
– Finger foods
– Techniques to reduce aspiration
– Favorite foods
Treatment options
1. Continue to feed orally:
– Provide food and drink to the extent that it is
enjoyable and comfortable
– Conscientious hand-feeding
– Opportunity to interact
– Accept sub-optimal nutrition in favor of comfort
– Does not mean medical care is stopped
2. Long-term tube-feeding by PEG or J-tube
• “There are profound disparities in advanced
dementia care…[O]utcomes considered
markers of poor-quality end-of-life care
include increased use of tube feeding,
terminal hospitalizations, and lack of advance
directives…[A]fter patient characteristics are
controlled for, these outcomes vary
dramatically across the United States in a
strikingly consistent pattern, with a general
propensity for worse quality of care in the
southeast.”
Mitchell SL, Black BS, Ersek M, et al. Advanced dementia: state of the art and priorities for the next decade. Ann
Intern Med. 2012 January 3;156(1):45-51.
•
•
•
•
NH residents followed for up to one year
Feeding tube inserted?
Followed one year post insertion
Results:
– 68% tube insertions in acute care hospital
(pneumonia, dehydration, dysphagia)
– 64% one year post-insertion mortality
(median survival 56 days)
– 19% required tube replacement or repositioning
– 9 hospitalized days per person, 1 hospitalization
J Am Med Dir Assoc. 2009 May;10(4):264-270.
Rate of feeding tube incidence per 1,000 NH residents
with advanced dementia by state, 2000-2001
• Multivariate model: Association between feeding tube use
and overall quality of life in the last week of life?
• NHs, hospitals, and ALFs
• 486 family members surveyed
• Less likely to report excellent EOL care (adjusted OR = 0.42)
• Restraints:
– Physical 26%
– Pharmacological 29%
• 52% felt healthcare provider strongly in favor
• 13% felt pressured by physician to insert
J Am Geriatr Soc. 2011 May;59(5):881-886.
• Do feeding tubes:
– prevent aspiration pneumonia?
– prevent malnutrition?
– decrease mortality rate?
– prevent pressure sores or hasten
their healing?
– improve patient comfort?
– improve functional status?
Tube feeding in patients with advanced
dementia: a review of the evidence
• “We searched MEDLINE, 1966 through March
1999, to identify data about whether tube
feeding in patients with advanced dementia
can prevent aspiration pneumonia, prolong
survival, reduce the risk of pressure sores or
infections, improve function, or provide
palliation.
Finucane TE, Christmas C, Travis K. JAMA. 1999 Oct 13;282(14):1365-1370.
• “We found no published randomized trials
that compare tube feeding with oral feeding.
We found no data to suggest that tube feeding
improves any of these clinically important
outcomes and some data to suggest that it
does not. Further, risks are substantial. The
widespread practice of tube feeding should be
carefully reconsidered, and we believe that for
severely demented patients the practice
should be discouraged on clinical grounds.”
• “…We found no conclusive evidence that enteral tube
nutrition is effective in terms of prolonging survival,
improving quality of life, or leading to better
nourishment or decreasing the risk of pressure sores. It
may actually increase the risk of developing pneumonia
due to inhaling small quantities of the feed and even
death…”
Cochrane Database Syst Rev. 2009 Apr 15;(2):CD007209.
• Do feeding tubes:
– prevent aspiration pneumonia?
– prevent malnutrition?
– decrease mortality rate?
– prevent pressure sores or hasten
their healing?
– improve patient comfort?
– improve functional status?
• Do feeding tubes:
– prevent aspiration pneumonia?
– prevent malnutrition?
– decrease mortality rate?
– prevent pressure sores or hasten
their healing?
– improve patient comfort?
– improve functional status?
Use of tube feeding to prevent
aspiration pneumonia
Finucane TE, Bynum JP. Lancet. 1996 Nov 23;348(9039):1421-1424.
Survival
• No published studies suggest TF prolongs
survival in dementia patients with dysphagia
Mitchell SL, Kiely DK, Lipsitz LA. The risk factors and impact on survival of feeding tube placement in nursing home
residents with severe cognitive impairment. Arch Intern Med. 1997 Feb 10;157(3):327-332.
Feeding tube complications
Ways to approach “starvation” concerns
• Substituted decision-making: Taking the
burden off the family member if possible
• “If he could talk with us, what would he tell us
to do?”
• Not starving:
– Symptomatically
– Ethically
Starvation? No
Dry mouth and thirst? Can address
Educate family
• Decreased intake
natural part of dying
• Empiric evidence
supports comfort
• Starvation leads to fat
metabolism and ketone
production, resulting in
euphoria
Patient management
• Small sips as tolerated
and desired
• Swabs
• Wet wash cloth
• Hard candy
• Lubricants
McCann RM, Hall WJ, Groth-Juncker A. Comfort care for terminally ill patients: the appropriate use of nutrition and
hydration. JAMA. 1994 Oct 26;272(16):1263-1266.
Clinical
situation
Revisit
the
decision
Goals
of care
Decisionmaking
Additional
sources of
decisional
support
Options
Risks and
benefits/
Values and
preferences
Prognostication
• Difficult
• Hospice criteria (utilizes FAST scale plus
infections/other medical complications):
– ~50/50 chance of getting </= 6-month prognosis
correct
• A barrier to hospice enrollment, which is helpful:
– Better symptom management
– Fewer terminal hospitalizations
– Greater family satisfaction with care
Mitchell SL, Black BS, Ersek M, et al. Advanced dementia: state of the art and priorities for the next decade. Ann
Intern Med. 2012 January 3;156(1):45-51.
12 factors predicting survival
•
•
•
•
•
•
Length of stay (in NH)
Age
Male
Dyspnea
Pressure ulcers
Bowel incontinence
• Total functional
dependence
• Bedfast
• Insufficient intake
• BMI
• Weight loss
• CHF
Mitchell SL, Miller SC, Teno JM, et al. The advanced dementia prognostic tool (ADEPT): a risk score to estimate
survival in nursing home residents with advanced dementia. J Pain Symptom Manage. 2010 Novemer;40(5):639-651.
Total risk score and probability of death
Total risk score and probability of death
Area under receiver operating
characteristic curve (AUROC)
• 0.68 for Advanced Dementia Prognostic Tool
(ADEPT) in final model (retrospective study)
• 0.67 in prospective study
• (Hospice guideline AUROC = 0.55)
• → Chance of getting “alive or dead” correct
with ADEPT = ~2/3 (compared to ~1/2 for
hospice criteria)
Mitchell SL, Miller SC, Teno JM, et al. Prediction of 6-month survival of nursing home residents with advanced
dementia using ADEPT vs hospice eligibility guidelines. JAMA. 2010 Nov 3;304(17):1929-1935.
Other palliative issues
• Pain and other symptoms
• Care planning:
– Less likely to occur in dementia
– Timing?
Harris, D. Forget me not: palliative care for people with dementia. Postgrad Med J. 2007;83:362-366.
Other palliative issues
• Pain and other symptoms
• Care planning:
– Less likely to occur in dementia
– Timing?
Harris, D. Forget me not: palliative care for people with dementia. Postgrad Med J. 2007;83:362-366.
Common painful conditions in elderly
Condition
• Osteoarthritis
• Gout and pseudogout
• Osteoporosis
• Claudication
• Postherpetic neuralgia
• Spinal stenosis
• Fibromyalgia
• Diabetic neuropathy
• Constipation
• Fractures
Increasing prevalence with age
•
•
•
•
•
•
•
•
•
•
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Probably
Yes
Yes
Shega JW, Levine SK. Dementia. UNIPAC 9: Caring for Patients with Chronic Illness: Dementia, COPD, and CHF. 4th ed.
Glenview, IL: American Academy of Hospice and Palliative Medicine; 2012.
Corbett A, Husebo B, Malcangio M, et al. Assessment and treatment of pain in people with dementia. Nat Rev
Neurol. 2012 Apr 10;8(5):264-274.
Consider scheduling 650-1000 mg tid for continuous pain.
American Geriatrics Society Panel on Pharmacological Management of Persistent Pain in Older Persons.
Pharmacological management of persistent pain in older persons. J Am Geriatr Soc. 2009 Aug;57(8):1331-1346.
Consider scheduling oxy IR 2.5-5 mg or MS IR 7.5 mg (equivalent to
oxy IR 5) q4h “offer, may refuse”—patient may refuse or med may be
held if no pain or dyspnea—if concerned patient will not ask for prn.
Hydromorphone PO is ~4x as potent as morphine PO.
Gloth FM 3rd. Pharmacological management of persistent pain in older persons: focus on opioids and nonopioids.
J Pain. 2011 Mar;12(3 Suppl 1):S14-20.
A note regarding bowel regimens
•
•
•
•
•
•
When using opioids, docusate is not enough
Need push, not mush
Stimulant laxatives (Senna, Dulcolax)
Osmotic laxatives (Miralax, lactulose)
Etc.
When these medicines are used, docusate is
superfluous and can be discontinued (reduce
excess pill burden)
Difficult
behaviors in
long-term Care
patients with
dementia
Buhr GT, White HK. J Am Med Dir Assoc. 2006 Mar;7(3):180-192.
Causes contributing to agitation
Contributing cause
Consideration
Treatment
Physical symptom
Pain
Analgesics
Sleep disturbance
Behavior modification,
sedative-hypnotic drugs
Psychological symptom
Depression
Antidepressant
Medical illness
Delirium
Evaluate predisposing causes
Seizure disorder
Treat underlying condition
Constipation
Urinary retention
Psychosis
Dehydration
Infection
Unmet need
Hunger
Attend to meet need(s)
Social isolation
Soiled diaper
Shega JW, Levine SK. Dementia. UNIPAC 9: Caring for Patients with Chronic Illness: Dementia, COPD, and CHF. 4th ed.
Glenview, IL: American Academy of Hospice and Palliative Medicine; 2012.
Contributing cause
Consideration
Treatment
Sensory impairment
Vision loss
Adaptive devices
Hearing loss
Environment
Unfamiliar surroundings
Modify environment
Overstimulation
Understimulation
Medication/substance
Digoxin
Decrease dosage/discontinue
Theophylline
Methylphenidate
Caffeine
Antipsychotic
Benzodiazepine
Underlying dementia
Alzheimer disease
Evaluate severity of symptom
Vascular dementia
Consider risk-benefit ratio of
available treatments
Lewy body dementia
Mixed dementia
Other
Buhr GT, White HK. J Am Med Dir Assoc.
2006 Mar;7(3):180-192.
Other palliative issues
• Pain and other symptoms
• Care planning:
– Less likely to occur in dementia
– Timing?
Harris, D. Forget me not: palliative care for people with dementia. Postgrad Med J. 2007;83:362-366.
Other palliative issues
• Pain and other symptoms
• Care planning:
– Less likely to occur in dementia
– Timing?
Harris, D. Forget me not: palliative care for people with dementia. Postgrad Med J. 2007;83:362-366.
Survival and Comfort After Treatment
of Pneumonia in Advanced Dementia
• All routes increase survival (adjusted hazard ratios)*:
– PO 0.20
– IM 0.26
– IV (or hospitalization) 0.20
• All routes lead to lower quality of life (Symptom
Management at End-of-Life in Dementia scores):
–
–
–
–
No treatment 39.4
PO 34.0
IM 33.7
IV (or hospitalization) 30.5
* Antibiotics generally do not increase survival in end-stage dementia
Givens JL, Jones RN, Shaffer ML, et al. Arch Intern Med. 2010;170(13):1102-1107.
When to initiate advance care
planning/palliative care referral
• Identification of terminal phase is difficult:
– ADEPT better than hospice criteria
• “Surprise” question
• Early advance care planning can give the
patient a voice before it is too late
• “In the last 3 months of life, 40.7% of residents
underwent at least one burdensome intervention
(hospitalization, emergency room visit, parenteral
therapy, or tube feeding). Residents whose
proxies had an understanding of the poor
prognosis and clinical complications expected in
advanced dementia were much less likely to have
burdensome interventions in the last 3 months of
life…(adjusted OR 0.12).”
1529-1538.
J Gen Intern Med. 2004 Oct;19(10):1057–1063.
References
American Geriatrics Society Panel on Pharmacological Management of Persistent Pain in Older
Persons. Pharmacological management of persistent pain in older persons. J Am Geriatr Soc. 2009
Aug;57(8):1331-1346.
Buhr GT, White HK. Difficult behaviors in long-term care patients with dementia. J Am Med Dir
Assoc. 2006 Mar;7(3):180-192.
Consumer Health Choices: Choosing Wisely. http://consumerhealthchoices.org/wpcontent/uploads/2013/05/ChoosingWiselyFeedingTubeAGS-ER.pdf. Accessed 8/3/16.
Corbett A, Husebo B, Malcangio M, et al. Assessment and treatment of pain in people with
dementia. Nat Rev Neurol. 2012 Apr 10;8(5):264-274.
Education in Palliative and End-of-Life Care (EPEC) for Geriatrics: Feeding Decisions in Advanced
Dementia.
Finucane TE, Bynum JP. Use of tube feeding to prevent aspiration pneumonia. Lancet. 1996 Nov
23;348(9039):1421-1424.
Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of
the evidence. JAMA. 1999 Oct 13;282(14):1365-1370.
Givens JL, Jones RN, Shaffer ML, et al. Survival and comfort after treatment of pneumonia in
advanced dementia. Arch Intern Med. 2010;170(13):1102-1107.
Gloth FM 3rd. Pharmacological management of persistent pain in older persons: focus on opioids
and nonopioids. J Pain. 2011 Mar;12(3 Suppl 1):S14-20.
Harris, D. Forget me not: palliative care for people with dementia. Postgrad Med J. 2007;83:362366.
Israel J, Morrison RS. Geriatric palliative care. Principles and Practice of Palliative Care and
Supportive Oncology. 4th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2013.
Kuo S, Rhodes RL, Mitchell SL, et al. Natural history of feeding-tube use in nursing home residents
with advanced dementia. J Am Med Dir Assoc. 2009 May;10(4):264-270.
References
McCann RM, Hall WJ, Groth-Juncker A. Comfort care for terminally ill patients: the appropriate
use of nutrition and hydration. JAMA. 1994 Oct 26;272(16):1263-1266.
Mitchell SL, Black BS, Ersek M, et al. Advanced dementia: state of the art and priorities for the
next decade. Ann Intern Med. 2012 January 3;156(1):45-51.
Mitchell SL, Kiely DK, Lipsitz LA. The risk factors and impact on survival of feeding tube placement
in nursing home residents with severe cognitive impairment. Arch Intern Med. 1997 Feb
10;157(3):327-332.
Mitchell SL, Miller SC, Teno JM, et al. Prediction of 6-month survival of nursing home residents
with advanced dementia using ADEPT vs hospice eligibility guidelines. JAMA. 2010 Nov
3;304(17):1929-1935.
Mitchell SL, Miller SC, Teno JM, et al. The advanced dementia prognostic tool (ADEPT): a risk
score to estimate survival in nursing home residents with advanced dementia. J Pain Symptom
Manage. 2010 Novemer;40(5):639-651.
Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. N Engl J Med.
2009 Oct 15;361(16):1529-1538.
Sachs GA, Shega JW, Cox-Hayley D. Barriers to excellent end-of-life care for patients with
dementia. J Gen Intern Med. 2004 Oct;19(10):1057-1063.
Sampson EL, Candy B, Jones L. Enteral tube feeding for older people with advanced dementia.
Cochrane Database Syst Rev. 2009 Apr 15;(2):CD007209.
Shega JW, Levine SK. Dementia. UNIPAC 9: Caring for Patients with Chronic Illness: Dementia,
COPD, and CHF. 4th ed. Glenview, IL: American Academy of Hospice and Palliative Medicine;
2012.
Teno JM, Mitchell SL, Kuo SK, et al. Decision-making and outcomes of feeding tube insertion: a
five-state study. J Am Geriatr Soc. 2011 May;59(5):881-886.
The Ottawa Hospital. https://decisionaid.ohri.ca/docs/das/Feeding_Options.pdf. Accessed
6/24/16.
III. GOALS OF CARE CONVERSATIONS/
COMMUNICATION AT END OF LIFE
Are you comfortable when
communicating with
patients and families about
serious illness?
Are you effective when
communicating with
patients and families about
serious illness?
Does better communication really
make a difference?
• Good communication:
– improves a patient’s adjustment to illness
– lessens pain and physical symptoms
– increases adherence to treatment
– results in higher satisfaction with care
• Poor communication is associated with:
– increased use of ineffectual treatments
– higher rates of conflict
– less adherence
Back A, Arnold R, Tulsky J. Mastering Communication with Seriously Ill Patients: Balancing Honesty with Empathy and
Hope. New York, NY: Cambridge University Press; 2009.
It also affects you
• It helps you enjoy and thrive in your work
• Better communication skills are associated
with:
– less stress
– less burnout
– fewer malpractice claims
Customer-centered communication
• A—ACKNOWLEDGE the patient by name. Make eye
contact, smile, and acknowledge everyone in the room
(patient and families).
• I—INTRODUCE yourself, your skill set, your professional
certification, and experience.
• D—What is the expected DURATION for the tests,
interventions, etc.? Update when this changes.
• E—Give an EXPLANATION step by step of what will
happen, answer questions, and leave a way to contact
you. Use language a patient can understand.
• T—Say THANK YOU to patient and family. You may
thank the patient for choosing your medical practice
and for their communication and cooperation. Thank
the family for assistance and being there to support the
patient.
AIDET® in the medical practice: more important than ever. https://www.studergroup.com/resources/news-media/
healthcare-publications-resources/insights/november-2014/aidet-in-the-medical-practice-more-important-than.
Nonverbal communication
• S—Face the patient SQUARELY to indicate
interest
• O—Adopt an OPEN body posture
• L—LEAN toward the patient
• E—Use EYE contact to show that you are
paying attention
• R—Maintain a RELAXED body posture
Back A, Arnold R, Tulsky J. Mastering Communication with Seriously Ill Patients: Balancing Honesty with Empathy and
Hope. New York, NY: Cambridge University Press; 2009.
Motivational interviewing
• A person-centered, guiding method of
communication and counseling to elicit and
strengthen motivation for change
• The prep-step before action
• Provider empathy is the best predictor of
patient (family) behavior change
Communication roles
Parent
Parent
Adult
Adult
Child
Child
O.A.R.S.
• O—Ask mostly OPEN-ENDED questions
• A—AFFIRM the patient (family) by saying things
that are positive or complimentary and by
focusing on strengths, abilities, or efforts
• R—REFLECTIVE listening:
–
–
–
–
Listen carefully, without judgment or interruption
Allow for silence
Use “encouragers” to invite dialogue
Use reflective statements to show you are listening
• S—Provide appropriate SUMMARIES
• “People are generally better persuaded by the
reasons which they have themselves
discovered, than by those which have come
into the mind of others.”
- Pascal’s Pensées (17th century)
• 4 objectives:
– Gather information from the patient
– Transmit the medical information
– Provide support to the patient
– Elicit the patient’s collaboration in developing the
treatment plan
The Oncologist. 2000;5:302-311.
Communication skills
• Responding to emotional reactions
• Involving the patient in decision-making
• Dealing with the stress created by
expectations for cure
• Involvement of multiple family members
• How to give hope when the situation is bleak
Barrier: provider discomfort
• Uncertainty about patient expectations
• Fear of destroying hope
• Feelings of inadequacy in the face of
uncontrollable disease
• Not feeling prepared for emotional reaction
• Embarrassment at having been too optimistic
previously
* Opportunity for empathic alignment
Providers should keep in mind…
• Many patients already know they are doing
poorly but are afraid to bring it up
• Understanding patients’ specific goals, such as
symptom control, and making sure they
receive the best possible treatment and
continuity of care allow providers to frame
hope in terms of what it is possible to
accomplish → very reassuring to patients
• Focus groups:
–
–
–
–
–
–
–
Physicians
Nurses
Social workers
Chaplains
Hospice volunteers
Patients
Recently bereaved family members
• What are the attributes of a good death?
Ann Intern Med. 2000;132:825-832.
Pain/
symptom
management
Affirmation
of the
whole
person
Clear
decisionmaking
Good
death
Preparation
for death
Contributing
to others
Completion
• “…providers avoided end-of-life discussion
because they did not want to remove hope.
• “However, patients and families feared bad
dying more than death.”
No
planning
ahead
No
goodbyes
Bad
death
High
family
burden
No
arrangement
of affairs
• “…[P]reparation does not preclude hope; it
merely frames it.
• “After a new diagnosis, patients usually hope
for a cure.
• “However, they also hope for lack of pain,
lucidity, good quality of life, and a [provider]
who is committed to being with them…”
Bottom line
• Bad news does not invariably cause
psychological harm
• Bad delivery does
SPIKES
•
•
•
•
•
S—SETTING UP the interview
P—Assessing the patient’s PERCEPTION
I—Obtaining the patient’s INVITATION
K—Giving KNOWLEDGE and information
E—Addressing the patient’s EMOTIONS with
EMPATHY
• S—STRATEGY and SUMMARY
Setting
•
•
•
•
•
Privacy
Involve significant others
Sit down
Make connection with the patient
Manage time constraints and interruptions
Perception
• Very important, frequently overlooked
• Correct misunderstanding
• Tailor the bad news to what the patient
understands
• Easy to spot “denial”:
– wishful thinking
– omission of details of illness
– unrealistic expectations of treatment
Invitation
• Some patients do not want all the information
• Some do not want any of it
– “Some people want lots of details, some want to focus
on the big picture, and some would rather not discuss
what may happen in the future altogether. What
would be best for you?”
• Some want you to tell their families
• Some do not want their families to hear any of it
• Shunning information is a valid psychological
coping mechanism
Invitation, continued
• “How do you like to receive medical
information?”
• “How would you like to receive the results of
these tests?”
• “Is it okay to talk in front of your family?”
• It is abusive to force patients to hear
information they prefer not to know
Knowledge
• Warn that serious news is coming
(“Unfortunately I have some serious news…”)
• Start at the level of comprehension and
vocabulary of the patient
• Use nontechnical words (“spread” instead of
“metastasized”)
• Avoid excessive bluntness
• Give information in small chunks, and check
understanding
What knowledge is desired?
• Patient: “I want to know my prognosis”
• Provider: “What kind of information do you
want about the future?”
– Statistics: average time a person with this stage of
disease lives
– Worst case scenario and best case scenario
– Specific event in the future you are wondering
whether you will live to experience
When patients do not want to know
1.
2.
3.
4.
Try to understand why
Acknowledge the patient’s concerns
Ask for permission to revisit the topic
Make a private assessment about whether
prognosis might change decision-making:
– If poor understanding of prognosis is leading to
poor decision-making, negotiate for limited
disclosure or for discussing with a surrogate
– The key question: Does the patient need the
information now?
Knowledge, continued
• Never say, “There is nothing more we can do
for you”
• Patients have other important goals such as
good pain control and symptom relief
• Provider empathy provides the support and
safety needed for the patient to face a difficult
reality → empathy is our most useful
communication practice
• Ask, tell, ask: an essential tool for medical
communication
1. Ask what information is wanted regarding
prognosis
2. Give the desired information
3. Check for understanding
N Engl J Med. 2012 Oct 25;367(17):1651-1652.
Addressing emotions with empathy
• Silence, disbelief, crying, denial, anger, etc.
• Empathic response:
1. Closely observe reactions and emotions
2. Identify and name the emotion
• “I can see that you are shocked by this news”
3. Identify the reason for the emotion
• (For the silent patient) “Please tell me what you are
thinking” (not “feeling”)
4. Let the patient know you see the connection and
validate the emotion
NURSE the emotion
• Patient’s emotion statement: “These headaches are
killing me!”
• N—NAME the emotion
– “It sounds like this has been frustrating”
• U—UNDERSTAND the emotion
– “It must be so hard to be in pain like that”
• R—RESPECT (praise) the patient
– “I’m so impressed that you’ve been able to keep up with
treatments while having these headaches”
• S—SUPPORT the patient
– “I will be here, and my team, to help with the headaches”
• E—EXPLORE the emotion
– “Tell me more about how these headaches are affecting you”
Fischer G, Tulsky J, Arnold R. Communicating a poor prognosis. In: R. Portenoy and E. Bruera, eds. Topics in Palliative
Care. New York, NY: Oxford University Press; 2000.
Note #1 on word choice
• Deliver “serious” news instead of “bad” news:
– “When I tell the patient, ‘I have some serious
news for you…,’ I’m saying that this is something
we can work on together…That is far different
from saying, ‘I have bad news,’ and implying that
you’re just going to have to suck it up.”
– Dr. Anthony Back
Chesanow N. Delivering “bad” vs “serious” news to patients. http://www.medscape.com/viewarticle/856955.
Note #2 on word choice
• “I wish…(things were different)” is more
effective than “I’m sorry…(that this has
happened to you)”
• Reasons why “I’m sorry” is problematic:
1.
2.
3.
4.
Confusion with sympathy or even pity
Shortcutting a deeper understanding
Confusion with apologies
Changing the subject from the patient and family
to the provider
Quill TE, Arnold RA, Platt F. “I wish things were different”: expressing wishes in response to loss, futility, and unrealistic
hopes. Ann Intern Med. 2 Oct 2001;135(7):551-555.
Note #3 on word choice
• Drop the “but”
• Examples:
– “I know you’re hurting, but I can’t prescribe you more
pain medicine”
– “I know you want to get better, but I don’t think that
will happen”
• “But” tends to negate whatever came before it
Strategy and summary
•
•
•
•
Having a clear plan leads to less anxiety
Check for readiness before proceeding
Guide and give recommendations
Share responsibility for decision-making with
the patient
• Check for understanding
Can a poor prognosis destroy hope?
• Blunt providers can destroy hope with
information dumping
• It is the presentation, not the prognosis itself
• When patients and families feel that the
provider is responsive to their information
needs, that conversation can make them
hopeful in a particular way → the provider will
be present to help face an uncertain future
Back A, Arnold R, Tulsky J. Mastering Communication with Seriously Ill Patients: Balancing Honesty with Empathy and
Hope. New York, NY: Cambridge University Press; 2009.
Physician as healer
• “In acute illness, chronic illness, or terminal
illness, the active presence of the physician is
a part of the treatment. I believe that it is
accurate to put it even more strongly: The
physician is the treatment.”
– Eric Cassell
Cassell EJ. The Nature of Suffering and the Goals of Medicine. New York, NY: Oxford University Press; 2004.
In the nick of time
• 63 y/o WM c severe alcoholism and cirrhosis
• Admitted 5/23/16 with alcoholic hepatitis and
renal failure
• PC consulted 5/26/16 (Thursday)
• Consult d/c’ed prior to performance
• Surprising recovery; discharged 5/31/16
• Seen by PC 5/31/16 for advance care planning
• DNR established
In the nick of time, continued
• Readmitted 6/5/16 with concern for SBP,
alcoholic hepatitis, and renal failure
• N/V and AMS felt to be 2/2 uremia → dialysis
• PC consulted 6/7/16
• Arrived at room a few minutes after patient
transporter (going for HD catheter)
In the nick of time, continued
• Talked on phone with mother (Waynesboro
NH)
• MELD score predicted ~1/4 chance of being
alive at 3 months with or without HD
• Catheter placement d/c’ed; transitioned to GIP
hospice 6/8/16; died 6/15/16
Commonly difficult conversations
• Discontinuing dialysis
• Withholding/withdrawing artificial nutrition
and hydration (discussed already)
• Resolving conflict between family members
• Assisting with goals of care in light of
conflicting belief systems
• Prognosticating life expectancy
Discontinuing dialysis
• Generally comfortable
• Sometimes an “easy” way out of a tough
situation (e.g., new advanced cancer
diagnosis)
Resolving conflict
between family members
• Focus on interests, not positions
• Who is the final authority?
• Mississippi law:
1. Patient with decision-making capacity (if desiring to
make decisions)
2. Healthcare power of attorney (HC POA)
3. Spouse
4. Adult children (majority rules)
5. Parents
6. Siblings
Assisting with goals of care in light of
conflicting belief systems
• Courtesy, respect, curiosity
• FICA:
– Faith
– Importance
– Community
– Address
• Utilize chaplains
Prognosticating life expectancy
• Survival curves
• Surprise question
• Functional scales:
– Palliative Performance Scale (PPS)
PPS
Ambulation
Activity & evidence of
disease
100%
Full
Normal activity
No EOD
90%
Normal activity
Some EOD
80%
Normal activity with effort
Some EOD
70%
Reduced
60%
Self-care
Intake
Level of
consciousness
Full
Normal
Full
Estimated
survival
(days)
Normal or
reduced
Unable job/work
Significant disease
108-145
Unable hobby/house work
Significant disease
Occasional
assistance
Unable to do any work
Extensive disease
Considerable
assistance
50%
Mainly sit/lie
40%
Mainly in bed
Mainly
assistance
30%
Totally bed bound
Total care
Full or confusion
29-108
11-41
Full or drowsy +/confusion
8-41
Reduced
5-41
20%
Minimal
sips
2-6
10%
Mouth
care only
Drowsy or coma
--
--
0%
Dead
--
--
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Ariadne Labs. https://www.ariadnelabs.org/programs/serious-illness-care/resources/. Accessed
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Back A, Arnold R, Tulsky J. Mastering Communication with Seriously Ill Patients: Balancing
Honesty with Empathy and Hope. New York, NY: Cambridge University Press; 2009.
Baile WF, Buckman R, Lenzi R, et al. SPIKES—a six-step protocol for delivering bad news:
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Chesanow N. Delivering “bad” vs “serious” news to patients.
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Smith TJ, Longo DL. Talking with patients about dying. N Engl J Med. 2012 Oct 25;367(17):16511652.
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Questions?
Thank you!
Contact information
• Jacob Graham:
– (601) 288-4306
– [email protected]
• Amber Chancelor:
– (601) 288-4307
– [email protected]