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6/5/2013
Palliative and Hospice Care for the Dementia Patient.
27th Annual Alzheimer's’
Research Symposium June 20th, 2013
Greg Phelps MD Alzheimer’s is a Fatal Disease
• 6th most common hospice diagnosis
• 6th leading cause of death • Life expectancy between 2‐20 years with median survival 4.2 years men, 5.7 years women
• Last three months of life 40.7 % underwent at least one burdensome intervention (Hospitalization, PEG tube, ER visit)
• Patient’s most commonly die of infection from aspiration, UTI or infection from decubitus.
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There is Never, Ever
“Nothing Else We Can Do…Ever!”
Cure Sometimes, Treat often, Comfort Always
Hippocrates
What is the purpose of Medicine?
• Optimize health?
• Cure Disease
• Minimize disease burden • Maximize lifespan?
• Control symptoms
• Relieve pain
• Improve/ optimize function?
Two Things We Don’t Talk About!!‐ Death and Money!
Actually We are About Living Life Fully!
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“It is the Closure Fairy!”
To Be Comfortable in Discussing our Patient’s Mortality We Must be Cognizant of our Own • Love is Stronger Than Death: Peter Kreeft
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Death as an Enemy
Death as a Stranger
Death as a Friend
Death as Mother
Death as a Lover
• Mortality: Christopher Hitchens 2012
• Final Gifts Understanding the Special Awareness, Needs and Communication of the Dying. Maggie Callahan Patricia Kelly 1992
What Most Doctor’s Think of Hospice/Palliative Care
• I knew that, in order for a patient of mine to be eligible, I had to write a note certifying that he or she had a life expectancy of less than six months. And I knew few patients who had chosen it, except maybe in their very last few days, because they had to sign a form indicating that they understood their disease was incurable and that they were giving up on medical care to stop it. The picture I had of hospice was of a morphine drip
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Atul Gawande: Letting Go, What Should Medicine Do when It Can’t Save Your Life, The New Yorker. Aug 2, 2010
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Palliative Care Defined
• Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis.
• The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient's other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.
Everyone is entitled to SOME Palliative Care
Eight Domains in Palliative Care
–Physical
–Psychological
or psychiatric
–Social
–Spiritual
–Cultural
–Ethical
–Care of the
imminently
dying
–Process of
care
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What is the Difference Between Hospice and Palliative Care
Hospice is an insurance benefit‐
Palliative Care is a treatment philosophy
Palliative Care: Can be engaged
in life threatening illness much earlier in acute care when curative treatment still on‐going. Palliative Care
Hospice
Hospice‐A 1982 Medicare benefit . For last six months
of life. Usually home or residential based. Used when curative care no
longer pursued
The Economist‐May 25th, 2013
• As people live longer…for all the hot air about “Death Panels”, the cost effectiveness of a health‐care system matters. • More than perhaps any government in the world, America’s pays doctors to do stuff rather than keep people well. • That has to change.” Follow the Money!!
Democrats Propose (Best Case Scenario)
• US Healthcare is over 18% of GDP (more the twice the next first world country) 2.8 Trillion Dollars this year!! Projected to grow to 21% by 2023 5% of Medicare beneficiaries die annually.
27.4% of ALL Medicare outlay is in final year of life
The Obama’s budget proposal would require $57 billion in higher payments by Medicare beneficiaries, cut $306 billion in projected Medicare payments to health care providers and squeeze $19 billion out of Medicaid, the program for low‐income people. • 10,000 Baby Boomers hit 65 EVERY DAY • Percent of population over 65 to grow from 12% to 20% by 2030
• Single fastest growing segment of population is the “old elderly” ‐‐ 85+ •
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• New York Times April 10th, 2013 5
6/5/2013
Citing possible 8.3 million dollar savings, Gov. Bobby Jindal of Louisiana drops hospice for Medicaid Patients (Dec 2012)
Headline: ‘Jindal
to Poor:
“Drop Dead”’
January‐ Jidal rescinds order
Why?
• It was pointed out that many of those people dying at home in hospice would soon be dying in much more expensive hospitals
• Savings to Medicare by hospice and LOS to death:
• 1‐7 days……… $2,651.00
• 8‐14 days……. $5040.00
• 15‐30 days. $6,430.00
Health Affairs, 3/6/2013
Hospitals Can be Dangerous to the Elderly (and others)
“
Here‐‐‐Fill out this tag and attach it to your toe.”
A Scenario
• Ms B in nursing home with moderately advanced Alzeimer’s and CHF and DJD develops low grade cough and temp of 100.4.
• Night nurse calls on call physician who is unfamiliar with patient. He tells nurse to send patient to hospital
• Hospital ER sees small patch of possible atelectasis normal white count and chemistries. Has hospitalist admit patient for IV antibiotics
• 2nd night there patient climbs over bed rails breaks hip hospital stay now prolonged for hip replacement and rehab before return to SNF • Outlander JG, Berenson RA: Reducing Unnecessary Hospitalizations in Nursing Home Residents. NEJM 365 (13) 1165‐67
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Geriatric Frailty
“ A Physiologic syndrome characterized by decreased reserve and diminished resistance to stressors resulting from cumulative decline across multiple physiologic systems causing vulnerability to adverse outcomes “ American Geriatric Society Three of Five:
Secondary Criteria:
• Loss of Muscle strength
• Unintended weight loss
• Increased sleep or low activity level • Poor endurance easy fatigue
• Unsteady gait or slowed performance •
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Decreased cognition
Decreased balance
Deficient social support
Poor motor processing Poor health (self reported) • Frailty in general associated with 300‐500 increased risk of mortality
Mechanisms of Geriatric Frailty
• Sarcopenia: after age 40 8‐12% muscle loss per decade most replaced with fat. After 75 process accelerates • Neuro‐endocrine dysfunction: low testosterone, estrogen, insulin growth factor, DHEA, cortisol, growth hormone. • Chronic Low Grade inflammation: adipose tissues secrete pro‐inflammatory cytokines like IL‐6 etc. Curative/Functional/Palliative
Curative
Functional
Palliative
Goal: Cure Disease
Goal: Maintain/improve
function
Goal: Comfort care
Object of Treatment is disease
Object of treatment is disease while not impacting function of patient
Object of treatment is Patient and Family
Primary value is measurable data‐ labs X‐rays test (tends to devalue subjective immeasurable data) Primary value is assessment Primary Value is patient of function to determine
experience of suffering and appropriate level of treatment symptoms Patient’s body differentiated
from mind and often divided into treatable body parts by specialty Patient’s function as both body and mind must be protected Patient is viewed as complex being with emotional, physical social and spiritual components
Therapy is indicated to cure disease or slow progression.
Therapy is scaled to what patient can tolerate without likelihood of additional functional loss (Avoid “one point restraints) Therapy is indicated for relief of symptoms or suffering and congruent with patients Values and beliefs Death is the Ultimate
Failure Helping patient hold off loss of function until the very end is a success. Enabling Patient to live fully and comfortably until he or she dies is a success
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Hospital Associated Disability
JAMA Oct 26th, 2011 Covinsky KE, Pierluissi E., Johnston CB • Loss of ADLs during acute hospitalization.
• Occurs in 1/3 hospitalized patients > 70 • > 50% of patients > 85 leave hospital with new disability
• 1/3 of hospitalized elderly have delirium (more commonly hypoactive delirium)
• 41% of elderly who developed HAD DIED! In under one year, another 29% still disabled at one year
Steps to Avoid HAD • Avoid the “One Point Restraints” when possible: Urinary catheters, IVs, O2 catheters, NG tubes • Better recognition of functional status
• Exercise/ walk patients if at all able. • Ensure patient is eating properly • Avoid sedative hypnotics and anti‐histamines • Recognize and palliate pain and symptoms CAPC Survey of Attitudes
For Patients with Serious Illness
800 patient’s surveyed
Released June 28th 2011
Available at CAPC.org
• Biggest concerns: Cost, Control, Communication, Choice, Cure? Physicians not providing all treatment options‐ 55%
Doctors not sharing information with each other‐55%
Doctors not choosing best option for seriously ill‐ 54%
Patient and family leave physician office not knowing what they are supposed to do when they get home‐51%
– Patient lacks control over treatment options‐ 51%
– Doctor doesn’t spend enough time talking and listening with patient and family 50% –
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California Healthcare Foundation Survey 2012
70% ‐90% of patient’s say they would prefer to die at home (about 30% do) 66% say they would prefer to die a natural peaceful death. Only 7% desire all invasive therapeutic options deployed. Palliative Care When?:Triggers • The ‘‘surprise question’’: You would not be surprised if the patient died within 12 months or before adulthood
• Frequent admissions: e.g., more than one admission for same condition within several months, or coming from SNF • Complex care requirements: e.g., functional dependency; complex home support for ventilator/antibiotics/feedings/home O2
• Decline in function, feeding intolerance, or unintended decline in weight (e.g., failure to thrive)
• Move to, or from ICU
• Initiation of dialysis or ventilation
• PEG tube contemplated
• Pain or symptom control • Goals of Care/advance directives/Code status So What Happens to the Elderly (Survey 4158 Seniors) Non‐Hospice Patients
• Elderly patients avg. age 83
• 75% visit ER in final 6 months (40% more than once)
• >50% visit ER final month
• Of those in ER, 75% admitted
• 39% admitted to ICU
• 68% admitted died in hospital
Hospice patients
• Hospice Patients
• Less than 10% seen in ER
• Vast majority die at home
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Smith AK, McCarthy E, Weber E et al; Half Of Older Americans Seen In Emergency Department In Last Month Of Life; Most Admitted To Hospital, And Many Die There. Health Affairs. June 2012 31:61277‐1285
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End of Life Discussions
Subjects terminal cancer patient 4.4 month life expectancy • 123 of 332 (37%) patients with terminal illness had end of life discussions
• “Have you and your doctor discussed any particular wishes you have about the care you would receive if you were dying?”
• These patients elected less aggressive care with fewer ICU admits 4.1% vs
12.4%, fewer ventilation episodes 1.6 vs 11%,
• More aggressive care was associated with poorer quality of life for the patient and higher risk of major depressive disorder for bereaved care givers. (PTSD)
• Study showed that patients did not have increased depression or loss of hope. AA Wright, B Zhang A.Ray et al, Associations Between End of Life Discussions Patient Mental Health, Medical Care Near Death
And Caregiver Bereavement Adjustment. JAMA 1665‐1673. Oct 8, 2008
Advance Care Planning
Not So much about Death as
It’s About How You Want to Live
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What are your goals
How do you want to live
Paint me a picture of how you see your life
What is important to you
What do you want for your family
How do you want to be remembered
“Begin with the end in Mind.” Stephen Covey
“Hope for the Best/Plan for the Worst “
The Goals of Care Discussion
• Pre‐planning and semiotics
• Introductions • Purpose
• Tell me about the patient
• What do you understand about the diagnosis??
• WARNING SHOT (I wish statements)
• Explain diagnosis
• Await reaction • Validate emotions
• Keep the focus on the patient • Did you (r)… ever talk/advance directives • What would they want (substituted judgment)
• CPR/AND/ DNAR • Summarize and record.
Success of a GOC is based on how much family and patient talk!
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Mortality PPS Score
Six Month Mortality %
Survival in Days average
• PPS Score 10‐20%....96%
• PPS Scare 30‐40%....89%
• PPS Score 40‐50%...80%
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Median 1 Median 2
PPS 10%.... 1.88 6 PPS 20% ….2.62 6 PPS 30% ….6.7 41
40% ………..10.3 41
50%........... 13.9 41
We Was Robbed!
Hospice Diagnoses Removed as of 4/30/2013
• CMS demanding more precision in coding and diagnosis. (Actually a proposal for comment but most hospices freaked out!) • Debility
• Adult Failure to Thrive
• Senile dementia, pre‐senile dementia, vascular dementia
• Must be Alzheimer’s, CVA with dementia, Creutzfeldt‐Jakob, etc.
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FAST Criteria For Dementia
Functional Assessment Staging
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FAST (Functional Assessment Staging) Scale Items: Stage #1: No difficulty, either subjectively or objectively
Stage #2: Complains of forgetting location of objects; subjective work difficulties
Stage #3: Decreased job functioning evident to coworkers; difficulty in traveling to new locations
Stage #4: Decreased ability to perform complex tasks (e.g., planning dinner for guests; handling finances)
Stage #5: Requires assistance in choosing proper clothing
Dementia is hospice qualified @ 7A if associcated
With aspiration, or Upper UTI, sepsis, weight loss Of 10% in six months‐Stage III‐IV decubiti etc.
NHPCO Guidelines.
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FAST (Functional Assessment Staging) Scale Items: Stage #6: Decreased ability to dress, bathe, and toilet independently:
∙ Sub‐stage 6a: Difficulty putting clothing on properly
∙ Sub‐stage 6b: Unable to bath properly; may develop fear of bathing
∙ Sub‐stage 6c: Inability to handle mechanics of toileting (i.e., forgets to flush, does not wipe properly)
∙ Sub‐stage 6d: Urinary incontinence
∙ Sub‐stage 6e: Fecal incontinence
Stage #7: Loss of speech, locomotion, and consciousness: ∙ Sub‐stage 7a: Ability to speak limited (1 to 5 words a day)
∙ Sub‐stage 7b: All intelligible vocabulary lost
∙ Sub‐stage 7c: Non‐ambulatory
∙ Sub‐stage 7d: Unable to sit up independently
∙ Sub‐stage 7e: Unable to smile
It is Every Doctor’s Responsibility to Effectively Relieve Pain! Symptoms‐Pain and More
Total Suffering of end of life patients
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. 40‐70 % suffer unnecessary pain Fatigue 70‐95% Shortness of Air: 21‐78% Delirium 28‐83%
Constipation/Bowel Obstruction 5‐28%
Nausea/ vomiting 15‐40% Dry mouth/mouth sores
Depression
Spiritual angst 12
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For seniors, It is a GOOD Day when nothing New hurts!
Common Sources of Geriatric Pain
• Musculoskeletal: arthritis, spine disorders
• Nighttime leg pain, RLS, PVD muscle cramps
• Cancer: 80% of cancer patients have pain and chemotherapy can cause neuropathic pain. • Neuropathic pain such as diabetic neuropathy or Shingles (PHN) Challenges to Treating Geriatric Pain
Possible Cognitive Impairment
Fear of Addiction
Stoicism/ under‐reporting Increased risk of ADR (3% risk general population 10% risk geriatric population)
• Challenges of poly‐pharmacy •
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American Geriatric Society Chronic Pain Guidelines
First promulgated 1999
Revised 2002 Most recent revision April 21, 2009 Two substantial changes:
NSAIDS and Cox‐2 be used “rarely” and “with extreme caution” due to risky side effect profile that includes worsening hypertension, edema, heart failure renal failure and GI bleeds. • Also recommends “all patients with moderate to severe pain, pain related to functional impairment or diminished quality of life due to pain should be considered for opioid therapy
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Opioid Analgesics and the Risk of Fractures in Older Adults with Arthritis. Matthew Miller MD, MPH, ScD, Til Stürmer MD, MPH, Deborah Azrael PhD, et al. J. of American Geriatrics Society. Vol. 59 (3) pp 430‐8 March 2011
• Compared falls risk in between 12,436 opioid initiators and 4,874 NSAID initiators. Opioid patients had increased risk of falls that lasted two weeks after initiation 120 fractures /1000 person years vs 25 fractures/1000 person years for NSAIDs Problems with the Study
• 45% of patients were started on Darvocet which is sufficiently toxic (seizures cardio‐toxicity) to be taken off US markets
• Opioids were given to opioid Naïve patients in doses up to 225 mg codeine (37 mg morphine equivalent) • Opioid initiators more likely to be on benzos, PPI, steroids and more likely to have already fallen in the last year. • Source: Geripal blog‐ April 12, 2011
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The Gold Standard and Conversions
Oral Morphine Equivalents (OME)
Morphine
Hydromorphone
Oral Med
30 mg
7.5
IV/Sub Q Med
10 mg
1.5
Hydrocodone </= oral morphine </= oxycodone
Oral morphine daily dose is double fentanyl patch dose
IE: 50 mcg/h patch equals 100 mg daily oral morphine.
Oxymorphone is slightly more that twice the potency of morphine So 40 mg Opana = about 100 mg oral morphine Codeine is 1/6th as potent as morphine, i.e. 30 mg of
Codeine = 5 mg of morphine
Demerol 100 mg IV = 10 mg Morphine IV ALWAYS REDUCE DOSE IN CONVERSION 25‐50% FOR INCOMPLETE CROSS TOLERANCE
Scientists have identified 9 different forms of mu opioid receptors All conversion tables are, at best, rough equivalencies Timing Pain Meds
• Onset to peak : IV 10‐15 minutes, Sub Q 30 minutes, PO one hour‐short acting 3‐4 hours long acting. Fentanyl patches up to 12 hours. • Duration three to four hours for most short acting medications. (a little less for demerol, fentanyl)
• So meds should be should be scheduled accordingly‐‐‐ regularly and routinely
• If an IV med hasn’t worked in 15 minutes, it won’t. If a PO short acting med hasn’t worked in an hour, waiting four hours just ensures an effective dose is never reached. Pain Meds
Three Prescriptions • 1. Long acting: MS Contin, Oxycontin, Fentanyl
patches, Opana ER, Synalgous
• 2. Short acting: MS IR, oxycodone, hydrocodone 3. Bowel regimen
• The Opioid Naïve Patient: Set scheduled Q 4 h short acting. hydrocodone/oxycodone/morphine 5‐10 mg) PRN’s much more frequent‐q 1. • Tally all meds, scheduled and PRN and create new scheduled dose using long acting medication with breakthrough dose about 10‐15% of total daily long acting dose given q one hour PRN! 15
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Opioid Perils
Number Needed to Treat,(NNT) 2.6 Number needed to Harm (NNH) 8
• Most opioids processed by kidneys
• Testosterone/hypogonadism
• Opioid Induced Neurotoxicity‐twitches or hyper‐
algesia. • Respiratory depression/COPD very rare
• Addiction‐ rare!! (but watch the family) • GI‐ Constipation as long as opioids prescribed
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Nausea usually transient several days
• Sweating • Sedation transient 2‐3 days
Delirium: Acute change in level of arousal, altered sleep/wake, disturbance of memory and attention, perceptual disturbances with delusions and hallucinations: Fast Facts 001. •
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Hyperactive (13‐46%)‐restless, agitated, confused, hallucinations, “climbing over the bedrails”
52‐88% of terminally ill patients develop delirium
Hypoactive (up to 86%) reduced awareness, psycho motor retardation, lethargy. (Higher mortality than hyperactive)
42% of advanced cancer patients have delirium on admission and 88% at the end of life‐ Terminal Delirium
In cancer patients who develop delirium, 30 day mortality 83% 74% of patients can recall “being confused” in episode of delirium and over 80% said it was distressing DELIRIUMS •
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D Drugs: opioids, anticholinergics
E Eyes (sensory deficit‐sundowning) L Low O2 I, CVA, PE,
I Infection UTI, Pneumonia
R Retention urine/stool
I Ictal (seizures) U Under nourished, under hydrated
Metabolic DM, calcium, Sodium, S Subdural 16
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Treatment
Non‐Pharmacologic First
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Minimize catheters, IV’s restraints
Avoid immobility
Monitor nutrition/hydration
Monitor stool and urine output Control pain
Review medications
Minimize noise and interventions/promote sleep
Orientation Board and familiar family
Reorient/redirect communication with patient
Treatment
• Haldol, haldol haldol……..Haldol
• Few anti‐cholinergic effects, minimal cardiovascular effects, lack of active metabolites, versatility of routes of administration. (liquid 2mg/ml, tabs 1, 2 and 5 mg, injectable solutions 5mg/ml • Maximum doses between 20‐100 mg orally
• Parenteral dose about ½ PO dose
• Usual starting dose 0.5‐1 mg Q 6.
• May be given hourly until effective What Else
• Chlorpromazine (Thorazine) 12.5‐50 mg PO, PR, IM, IV (no sub Q) more sedating, helpful for terminal agitation. Can be given hourly and then Q 6
• Can cause severe hypotension
• “Atypical” antipsychotics not shown to be significantly more effective than Haldol but may have less side effects if Haldol dose >4 mg/day. Also have longer half life so less frequent dosing. • Ativan (lorazepam) helps with anxiety but may paradoxically worsen agitation. • Pentobarbital 100‐200 mg po IM or rectal
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Feeding Tubes and the Dementia “Death Spiral
• Scenario: Repeat admission for severely demented nursing home patient with pneumonia.
• Patient resists feeding, chokes a little, nurses suggest swallowing study to hospitalist.
• Swallowing study demonstrates aspiration
• GI is consulted for feeding/Peg tube to “improve nutrition, and reduce aspiration.” • tube placed patient returns to nursing home.
• Pulls tube out, restrained replaced gets pneumonia
• AND REPEAT!, Repeat, Repeat
• Family conference
• Death
Fast Facts‐ 084
Feeding Tubes and the Dementia
• 51% of severe AD patients will try to refuse food.
• Inability to maintain nutrition orally in the face of a chronic life limiting illness is usually a marker of the dying process.
• Risk factors INDEPENDENT of patient for getting a feeding tube include: speech therapist on full time staff, larger facility, more Medicaid, fewer assistants
• Nursing Homes receive higher reimbur$ement for tube fed patients.
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JAMA Evidence‐Care at the Close of Life. McPhee, Winkler Rabow et al editors, Chapter 12 2011 Feeding Tubes DO NOT •
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Prevent aspiration,
Improve function or quality of life,
Increase comfort
Improve weight gain
Improve wound healing
Substantially increase life expectancy
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Changes in Hospice
Medicare Patients:2000‐2009
• Number of patients dying at home increased from 24.6% to 32.6%
• Number of terminally ill patients using hospice increased from 21.6% to 42.3 % • However!!! 1/3 of patients dying in hospice had been in ICU in previous 30 days
• Percent of patients dying in under 3 days increased to 28.4%
Plan AHEAd
• Survey of over 500 elderly patients and families (average patient age 80) • 76% had thought about EOL and only 12% wanted aggressive treatment. • 49% had done advanced care plan • 76% formally named surrogate decision maker
• Only 30% had discussed this w PCP and 55% with ANY member of health care team
• Agreement between documentation in the record and patient’s expressed wishes only agreed 30% of the time!
Heyland DK, Barwich D, Picora D; Failure to Engage in Hospitalized Elderly Patients
and their Families in Advance Care Planning. JAMA Internal Medicine 4/1/2013 Tennessee Health Care Decisions Act
2004 TN Code Annotated 68‐11‐1801‐1815
• Streamlines and simplifies healthcare surrogacy, Allows universal DNR Allows physician to choose surrogate if no written request. • Places fine of $2,500 for failure to abide by patients written wishes (or hides or defaces living will) .
• Forms available: www.endoflifecaretn.org
• Do not need notary or lawyer.
• Must be done early in Alzheimer’s if patient is to have capacity. •
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Facts of TN HCDA
• Only effective IF patient loses decisional capacity
• If patient divorced, named spouse loses place.
• Takes court order to set aside written AD if patient non‐decisional • Surrogate may be chosen by physician. Should be someone involved with patient with regular contact and available to engage in face to face contact with physician. Document choice.
• Consideration given (in order) spouse, adult child, parent, adult sibling, other adult relative.
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Section 68‐11‐1706 1‐4
What Does Hospice Bring
• Home hospice is 100% covered by Medicare/ Tenncare and most insurances. Paid on daily per capita basis.
• Regulations require that hospice be delivered by hospice team that includes physician, nurses, nurses aids, chaplains, social workers, therapists dietician and volunteers
• Covers 100% of medications (from formulary) related to comfort care of the terminal illness
• Also covers DME such at hospital bed, O2, wheelchair etc. 20