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Caring When We Cannot Cure: Research in Geriatric Palliative Care


Caring When We Cannot Cure: Research in Geriatric Palliative Care John L. Shuster, Jr., MD Research and Development Tuscaloosa VAMC The Physician s Vocation To cure ... – PowerPoint PPT presentation

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Title: Caring When We Cannot Cure: Research in Geriatric Palliative Care

Caring When We Cannot Cure Research in
Geriatric Palliative Care
  • John L. Shuster, Jr., MD
  • Research and Development
  • Tuscaloosa VAMC

The Physicians Vocation
  • To cure sometimes
  • To relieve often
  • To comfort always
  • Traditional saying

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  • 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

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
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
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

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

Dying in the United States
  • Good news Americans are living longer with more
    of our years spent in good health and quality of
  • 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.

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

Goals of Palliative Care

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

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

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

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

Goals of Palliative Care
  • Help with bereavement, grief, and loss
  • Patient and family
  • Anticipatory and reactive

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

Who Are Our Patients?

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

Medicare Hospice Benefit
  • To be eligible, a patient must
  • Receive services from a Medicare-certified
  • 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

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

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)

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

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)

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
  • Median length of stay for dementia patients in
    hospice care was well below six-month limit

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
  • Authors proposed an alternative prognostic
    scoring system based on variables obtained from
    the MDS

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
  • Six-month survival

TVAMC - Hospice Eligible Patients
TVAMC - Hospice Eligiblity by Diagnosis
Cancer Dem. Heart Liver Pulm. Renal
TVAMC - Guidelines and Prediction of Mortality
Cancer Dem. Heart Liver Pulm. Renal
The Essential Problem
  • Hospice eligibility focuses on six-month
  • 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.

Biases That Want to Become Theories

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

Bias 2
  • Effective Palliation is Characteristically
  • 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

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

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

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)

Bias 4
  • Complications of Grief and Loss are Related to
  • A proportion of grief sufferers need formal
    intervention, not just companioning
  • Intervention is feasible, acceptable, and
  • 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

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
  • Effective treatment alleviates suffering and
    improves QOD
  • Effective treatment lessens the burden of family

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

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

Palliative Care ResearchBarriers and Benefits
to Participants

  • 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

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

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)
Barriers to Participation in Palliative Care
  • 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)

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

Barriers to Participation in Palliative Care
  • 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)

Benefits of Participation in Palliative Care
  • 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)

Benefits of Participation in Palliative Care
  • 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)

Benefits of Participation in Palliative Care
  • 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)

  • 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