Caring When We Cannot Cure: Research in Geriatric Palliative Care

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Caring When We Cannot Cure Research in
Geriatric Palliative Care

• John L. Shuster, Jr., MD
• Research and Development
• Tuscaloosa VAMC

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The Physicians Vocation

• To cure sometimes
• To relieve often
• To comfort always
• Traditional saying

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Overview

• Hospice and Palliative Care
• General Goals of Palliative Care
• Who Are Our Patients?
• Biases That Want to Become Theories
• Palliative Care Research Barriers and Benefits
  to Participants

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Hospice
Hospice care is a compassionate method of caring
for terminally ill people. Hospice is a medically
directed, interdisciplinary team-managed program
of services that focuses on the patient/family as
the unit of care. Hospice care is palliative
rather than curative, with an emphasis on pain
and symptom control, so that a person may live
the last days of life fully, with dignity and
comfort, at home or in a home-like setting.
- National Hospice and Palliative Care
Organization
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Palliative Care
The active total care of patients whose disease
is not responsive to curative treatment. Control
of pain, other symptoms, and of psychological,
social, and spiritual problems, is paramount.
The goal of palliative care is achievement of the
best quality of life for patients and their
families. - World Health
Organization, 1990
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Identity CrisisHospice vs. Palliative Care

• Hospice
• A movement or a reimbursement mechanism?
• Medical counterculture adopted by the mainstream?
• Too exclusively focused on dying?
• Palliative Care (Palliative Medicine)
• A part of mainstream medicine? A specialty?
• More academic, research oriented? At the expense
  of focus on patients and families?
• Too afraid of being identified with care for the
  dying?

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UK Model vs. US Model

• UK
• Hospice is a place, a facility with beds
• Home care is an outreach service
• Supported largely (primarily?) by philanthropy
• US
• Hospice is a philosophy of care
• Most hospice care is delivered in the home
• Supported through 3rd-party reimbursement

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Dying in the United States

• Good news Americans are living longer with more
  of our years spent in good health and quality of
  life.
• Bad news is twofold
• We now tend to die of chronic illness over time
  (with chronic symptoms and suffering).
• The US healthcare system is ill prepared to
  manage a large cohort of aging people dying
  slowly with chronic illnesses.

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Expanding the Range of Services

• Home hospice care
• Day hospice (Day respite) care
• Palliative care consultation services
• Outpatient palliative care clinics
• Inpatient palliative care units
• Collaborative LTC/Palliative care programs
• Bereavement care programs

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Goals of Palliative Care

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Goals of Palliative Care

• Non-abandonment
• Among the things patients and families fear most
  is being alone
• Assuring non-abandonment is one of the most
  healing things a palliative care program can do

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Goals of Palliative Care

• Symptom Control
• Pain
• Depression/Anxiety
• Fatigue/Weakness
• Nausea/Vomiting/Diarrhea/Constipation
• Respiratory distress
• Proactive assessment patients unlikely to
  voluntarily report symptoms accurately
• Multiple symptoms are the rule

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Goals of Palliative Care

• Assistance with Specific Life Goals
• Important upcoming events
• Meaningful projects
• Preparatory tasks (Getting affairs in order)
• Saying the Five Things (Byock)
• Please forgive me I forgive you Thank
  you I love you Goodbye

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Goals of Palliative Care

• Integration of the experience of lifes end
• Attending to suffering in all domains
• Biological and Physical
• Psychological and Emotional
• Social and Interpersonal
• Spiritual and Religious
• Intellectual and Professional
• Reviewing ones life narrative
• Focusing on meaning

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Goals of Palliative Care

• Help with bereavement, grief, and loss
• Patient and family
• Anticipatory and reactive

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Goals of Palliative Care

• Maintaining hope
• A confident expectation that good will come to
  one in the future
• Preserving dignity
• Value, esteem, lovability
• Healing vs. cure
• It is possible to die healed
• Wholeness vs. Eradication of disease

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Who Are Our Patients?

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Who are our patients?

• Is palliative care best viewed as holistic,
  person-centered care for persons with chronic
  illness that begins at the time of diagnosis?
• Medical turf as a political problem
• Is palliative care essentially focused on care at
  the end of life?
• The stench of death as a PR problem

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Medicare Hospice Benefit

• To be eligible, a patient must
• Receive services from a Medicare-certified
  hospice
• Have a prognosis of six months or less
• If the disease runs its normal course
• In the opinion of two physicians
• Be willing to forego life-extending therapy
• Sign an election form to this effect

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NHPCO Guidelines

• Designed to help with estimating hospice
  eligibility (i.e., a high probability of
  six-month mortality) in patients with non-cancer
  diagnoses
• In wide clinical use (as modified by Medicare
  fiscal intermediaries)
• Require substantial clinical judgment
• Relatively poor predictive value

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The Course of End-Stage Dementia

• Interval between diagnosis and death in
  Alzheimers Disease may be 10 years
• The end stage of the illness may last as long as
  2-3 years
• End-stage dementia is a poor fit for the standard
  hospice benefit (6-month prognosis)

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Determining Hospice Eligibility in Dementia

• No cure for dementia - treatment is essentially
  palliative from the time of diagnosis
• Published guidelines were developed for
  Alzheimers
• Guidelines describe clinical predictors of
  six-month mortality in dementia

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Determining Hospice Eligibility in Dementia

• Patient must be at or beyond Stage 7 on the
  Functional Assessment Staging (FAST) Scale
• Unable to ambulate
• Unable to bathe, dress, or feed independently
• Incontinent of bowel and bladder
• Unable to communicate meaningfully
• (Presence of medical complications)

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Length of Stay in Hospice

• Median length of stay for all diagnoses -36 days
  (Christakis and Escarce, NEJM, 1996)
• Significantly longer for dementia, COPD
• Dementia seen as a problem diagnosis by hospice
  regulators
• Median length of stay for dementia patients in
  hospice care was well below six-month limit

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Estimating Prognosis for Dementia in LTC

• Mitchell, et al, JAMA, 2004
• Looked at all patients admitted to NH in New York
  or Michigan over 6 years (Ngt10,000)
• Only 38.5 of those with FAST gt7 died within six
  months
• Authors proposed an alternative prognostic
  scoring system based on variables obtained from
  the MDS

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TVAMC Chart Audit Study

• Shuster, Rice, Tucker, Allen (Unpublished)
• All veterans admitted to a Geriatrics and
  Extended Care bed on January 1, 2004 (N 189)
• Looked at
• Potentially life-limiting diagnoses
• Evidence for meeting hospice eligibility
  guidelines
• Six-month survival

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TVAMC - Hospice Eligible Patients
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TVAMC - Hospice Eligiblity by Diagnosis
Cancer Dem. Heart Liver Pulm. Renal
Stroke
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TVAMC - Guidelines and Prediction of Mortality
Cancer Dem. Heart Liver Pulm. Renal
Stroke
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The Essential Problem

• Hospice eligibility focuses on six-month
  mortality.
• FAST is a poor predictor of mortality.
• End stage dementia lasts from 2-3 years
• What fills the gap?
• The familys perspective Where have you been?
  We needed you two years ago.
• Critical treatment decisions have often already
  been made.

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Biases That Want to Become Theories

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Bias 1

• Peace is the Word
• An integrative, overarching concept
• The most important outcome
• Associated with suffering and symptom control
• More closely associated with relationships and
  religious/existential factors

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Bias 2

• Effective Palliation is Characteristically
  Proactive
• Its easier and more effective to stay ahead than
  to play catch up
• Common problems can be anticipated
• Proactive intervention is more effective and less
  expensive across care settings

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Efficacy of Proactive Symptom Management
Strategies

• Clearly demonstrated for pain
• By the clock Dame Cecily Saunders
• Rationale for PCA pumps
• Multiple studies of prophylactic and preoperative
  analgesia
• What about anxiety? Dyspnea? Nausea?

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Bias 3

• Reactive Intervention is Most Effective When
  Guided by Subjective Priority
• Multiple symptoms and problems are the rule
• Symptoms and problems have variable impact on
  suffering among individuals
• Taking patient priority into account improves
  effectiveness of interventions

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Prioritizing Symptom Control

• Mostly a result of clinical observation
• Validation studies of the Memorial Symptom
  Assessment Scale (MSAS)
• Advanced cancer Approx. 12 symptoms/patient
• Advanced AIDS Approx. 18 symptoms/patient
• Cant intervene on this many symptoms at once
• Emerging concept of symptom clusters (and
  pro-inflammatory cytokines as mediators)

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Bias 4

• Complications of Grief and Loss are Related to
  Trauma
• A proportion of grief sufferers need formal
  intervention, not just companioning
• Intervention is feasible, acceptable, and
  effective
• Complicated bereavement is related to PTSD, other
  anxiety and mood disorders
• The circumstances of a loved ones death
  influence adaptation to grief both positively
  and negatively
• Religious faith (peace) buffers against the
  trauma of loss

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Bias 5

• End-of-Life Interventions for Dementia Patients
  are not Futile
• Symptoms can be anticipated and assessed
• Remediable or treatment-responsive symptoms can
  be detected and outcomes measured, demonstrating
  benefit
• Effective treatment alleviates suffering and
  improves QOD
• Effective treatment lessens the burden of family
  bereavement

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Research Projects and Initiatives

• Validation of a brief assessment strategy
• Evaluation of a legacy intervention
• Developing a clinical measurement for peace
• Document trajectory of palliative care needs for
  dementia patients, to shape studies of
  interventions

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Research Projects and Initiatives

• Observational study of loss and coping in
  patients with known anxiety disorders (PTSD, GAD)
• Symptom control preliminary studies
• Rates of delirium in the last week of life
• Emergency drug kits in home hospice care

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Palliative Care ResearchBarriers and Benefits
to Participants

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Barriers

• Attitudes
• Leave him alone, for goodness sake, hes dying.
• Philosophy
• Hospice as counterculture anecdotal
• Tolerance for observation?
• Logistics
• Most patients are at home
• Priorities
• Hospice staff are really busy
• Hospice patients have limited stamina

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Survey of Attitudes Toward Research Participation

• Williams C, Burgio K, ShusterJ (unpublished)
• Survey results from 142 hospice patients served
  by 21 hospice facilities in AL, FL, LA, and MS
• 39 response rate
• Survey focused on attitudes about participation
  in hospice research

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Perceived Barriers and Benefits
Groups Mean no. Barriers (SD) Mean no. Benefits (SD)
Hospice Caregiver for Self 1.26 ( 1.6) 2.14 (2.57)
Hospice Caregiver for patient 2.3 (2.24) 1.88 (2.58)
Hospice patient 2.13 (2.5) 2.30 (2.74)
Ambulatory Senior 1.6 (1.7) 1.81 (2.11)
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Barriers to Participation in Palliative Care
Research

• Too sick (39) (plt0.0001)
• Too little energy (34) (p0.0007)
• Burden on caregiver (24) (p0.0009)
• Concerns about being experimented on (18)
• Inconvenient (18) (p0.02)
• Already feeling overwhelmed (17)

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Barriers to Participation in Palliative Care
Research

• Financial cost (15)
• Might interfere with other medical care (14)
• Emotionally painful (13)
• Might take time away from other things (5)
  (p0.02)
• Might not get the best care (4) (p0.07)
• Privacy concerns (4)

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Barriers to Participation in Palliative Care
Research

• Compared to hospice patients, caregivers
• Overestimated the patient being too sick as a
  barrier (p0.06)
• Overestimated likelihood of emotional pain or
  discomfort from research participation (p0.02)
• Underestimated burden on caregiver due to
  patients potential research participation (24
  vs. 6 p0.05)

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Benefits of Participation in Palliative Care
Research

• Helping my doctor/nurse (37) (p0.03)
• Id feel good about helping others (33)
• Might make me feel better (28)
• Might improve my symptoms (24) (plt0.03)
• Contribute to science/knowledge (22)
• Give me a sense of purpose (20) (plt0.09)

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Benefits of Participation in Palliative Care
Research

• Give a sense of meaning to life (19)
• I may be followed more closely by my doctor/nurse
  (19) (p0.04)
• I may get better care (14)
• Opportunity to be social (11)
• Other (1)

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Benefits of Participation in Palliative Care
Research

• Compared to their family caregivers, hospice
  patients place a significantly higher value on
• Helping the doctor or nurse (p0.03)
• Feeling good about helping others (p0.02)

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Summary

• Palliative care is increasingly important in
  geriatrics and geriatric medicine
• Multiple gaps in the knowledge base
  (opportunities for research)

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Caring When We Cannot Cure Research in
Geriatric Palliative Care

• John L. Shuster, Jr., MD
• Research and Development
• Tuscaloosa VAMC