generalist vs specialist palliative care: who, what, when, where and why? timothy e. quill, md...
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Generalist vs Specialist Palliative Care: Who, what, when, where and why?
Timothy E. Quill, MD
Palliative Care Program; Department of Medicine
University of Rochester Medical Center
2014
Background in the United States
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Cultural Context in the US
Much more diverse than is regularly acknowledged
Rugged individualism; personal choice
Truth-telling, with an emphasis toward the positive
Death as an enemy rather than a natural part of the life cycle
Families smaller and more spread out
Little preventive care, but unlimited catastrophic care
Relatively little death talk
Culture of Medicine in the US
Lack of universal access (improving but a long way to go)
Deification of technology
Death as a medical failure, giving up• Do not go gently into the night; rage, rage against the light
• Physicians as patients often accept much less aggressive treatment
Limits of medicine vs. limits of your doctor or system
Truth telling, but shading toward the positive/hopeful
Costs are disconnected from outcomes or social norms
Some Background Data from the US
80% of deaths in hospital or nursing home
Families frequently impoverished
30% completion of advance directives
Inadequate pain management and epidemic of opioid overuse
Physicians overly optimistically prognosticate
Relatively infrequent, very late referrals to hospice
Medical rituals replacing religious rituals
Economic incentives promote over-treatment
Healing Approaches to Serious Illness
Limits of usual conceptualization• Curative or restorative disease-based model
• Unclear how adaptation to chronic illness fits
• Death as a medical failure
Broader model of healing• Maintaining integration and wholeness
• Finding meaning and maintaining connection
• Opportunity for growth and closure
• Commitment to face the unknown together
Palliative Care and HospiceDefinition of Terms
Palliative Care: biopsychosocial and spiritual care for seriously ill persons; symptom management and assistance with decision-making; can be provided alongside any and all medical treatments
Goal of Palliative Care: to produce the best possible quality of life for the patient and family, and to help patients make informed medical choices
Hospice: Medicare sponsored program dedicated to provide palliative care for terminally ill patients and their families; to receive hospice care, patients must agree to forgo disease-directed treatments
Elements of Medicare Hospice Benefit
“Cadillac” of home care programs
Payment for all medications and medical services
Expert team of experienced caregivers
Supplementation of care at home or nursing home
Capitated, per-diem reimbursement
Elements of Medicare Hospice Benefit –Some hard truths…
Prognosis of 6 months or less
Waive rights to curative treatments
2-4 hours of supplemental care at home – not 24 hour care
Limitations of Medicare Hospice Benefit
Inherent prognostic uncertainty; late referrals
Initially restricted to cancer patients, but becoming more available to patients with severe dementia, CHF, COPD, CVA, ALS
Unavailable to those who want to continue active Rx
Primary care giver requirement
Cultural, ethnic, socioeconomic barriers
Some Data from Hospice
Serves about 35% of patients who die in the US
Has broadened admission criteria to serve a wide range of
patients including those in nursing facilities
Length of stay tends to be short for those referred
• Median length of stay is about 3 weeks
• Mean length of stay is about 2 months
• About 1/3 are on the program for less than a week
Satisfaction levels are generally very high once on the program
Much variation between sites and regions of the country
Some Challenges of the Discussion About Hospice
Hospice requires a “bad news” discussion• Acceptance that medical treatment isn’t working• Acceptance of likelihood of death in 6 months• Giving up on hospitalization and disease-driven treatment
Many patients don’t want to stop all treatment• May be willing to stop burdensome treatment• May want to continue to maintain more options
Small chances of cure or longer life maintain hope
Traditional Hospice Model
HospiceLife Prolonging Care
Palliative Care:
As illness progresses, an increasing emphasis on palliation…
Palliative Care
Bereavement
Hospice
Life Prolonging
Care
Like hospice, palliative care provides:
Improved pain and symptom management
Careful attention to quality of life
Fresh look at medical goals and priorities
Opportunity to consider life closure
Multidisciplinary approach
Focus on patient and family
Unlike hospice, palliative care does not require:
Forgo active treatment of underling disease
Forgo acute hospitalization
Accept palliation as primary goal of treatment
A 6-month or less prognosis
When to discuss palliative care:
Patient experiencing pain or suffering regardless of prognosis
Patient or family with medical concerns about the future
Would you be surprised if patient died in 6-12 months?
All patients with serious, potentially life-threatening illness
Palliative Care is Not End of Life Care
Many patients seen are cured or have a normal life span
Making informed decisions about disease-directed treatments
Exploring the full range of treatment options• Aggressive treatment with no limits• DNR/DNI• Other potentially life extending treatment (eg dialysis, VAD…)• Hospice
Symptom reduction, emotional and spiritual well-being…
…at the same time they are receiving disease-directed treatments
Palliative Care:Hoping and Preparing
“Lets hope for the best…” • Join in the search for medical options• Open exploration of improbable/ experimental Rx• Ensure fully informed consent
“…attend to the present…”• Make sure pain and physical symptoms are fully managed• Attend to depression and any current psychosocial issues• Maximize current quality of life
“...and prepare for the worst.”• Make sure affairs (financial/personal) are settled• Think about unfinished business• Open spiritual and existential issues
Specialist vs GeneralistPalliative Care
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Specialist vs Generalist Palliative Care
Generalist Palliative Care• Provided by primary care clinician or non-palliative specialist
• May be alongside any and all other desired treatments
• Part of good medical care delivered by existing providers
Specialty Palliative Care• Provided by a clinician with specialty training in palliative care
• May also be alongside any and all other desired treatments
• May require more specialized knowledge and training
• Potentially be restricted to more difficult cases
• May be consultative or primary management
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Specialist vs Generalist Palliative Care:Some clinical examples…
Generalist Palliative Care• Basic pain and symptom management
• Goals of care discussions
• Family meetings for decision making
• Decisions about stopping treatment or resuscitation
Specialty Palliative Care• Complex pain and symptom management
• Major family conflict over plan of care
• Near futility discussions
• Accessing “last resort” options for refractory distress
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Isn’t palliative care just good medicine?
Most clinicians have not been formally trained• More part of medical school and residency training
• Basic curriculum for practicing clinicians
• May not know what they don’t know
• Individuals vs teams
Most generalists do not see the most challenging cases• Refractory symptoms unresponsive to basic treatments
• Invasive symptom management measures
• Severe depression and hopelessness
• Wish to die
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Specialty Palliative Care Consultation:Potential Benefits and Burdens
Benefits• Added ideas and expertise around challenging issues
• Don’t know our own “blind spots”
• Help with counter-transference issues
• Reassurance that all possibilities have been considered
Burdens• Yet another team of medical providers involved
• Potential to “de-skill” primary care and other specialist clinicians
• Undermine a strong clinician-patient-family relationship
• May offer burdensome, not helpful treatments
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Consultation vs Referral
Consultation• Address a specific question posed by referring clinician
• Second opinion about a particular aspect of care
• Patient returns to the referring clinician for ongoing care
Referral• Consulting physician manages some or all treatments
• May be limited to some aspect (dialysis, cancer,…)
• May take on overall responsibility
Confusion about primary responsibility in US
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Some Challenging Situations WherePalliative Care Consultation should be Considered
Difficult to control physical symptoms
Severe depression, anxiety or existential distress
Conflict around goals of treatment
Giving up on effective treatment seemingly “too soon”
Request for continued ineffective, aggressive treatment
Requests for assistance in dying
Difficult to Control Symptoms:Data about Unrelieved Pain at Death on Hospice
Bruera (Edmonton):15-37% “poor” pain control
Ventafrieda (Milan): 35% “uncontrolled” pain
Moulin/Foley (NY):27% “poor” control
Parks (St. Christopher): 8% “severe/unrelieved” pain
NHO: 21% “severe” pain 2 days prior to death
Difficult to Control Symptoms:Data about Other Unrelieved Symptoms on Hospice
NHO• 70% dyspnea during the last week
• 24% air hunger as “severe” or “horrible”
Oregon• 85% of patients seeking assistance in dying are in hospice
• Unrelieved pain rarely the major reason
• Loss of control, tiredness of dying, general debility common
Difficult to Control Symptoms: Some Data from Washington State - Motivations for Seeking a Hastened Death
Illness-related experiences• Feeling weak, tired, uncomfortable (69%)• Loss of function (66%)• Pain or unacceptable side effects of pain meds (40%)
Threats to sense of self• Loss of sense of self (63%)• Desire for control (60%)• Long-standing beliefs in favor of hastened death (14%)
Fears about the future• Fears about future quality of life and dying (60%)• Negative past experience with dying (49%)• Fear of being a burden on others (9%)
IT AIN’T PAIN, AND IT AIN’T SIMPLE(Pearlman / Starks in Physician-Assisted Dying .2004 J Hopkins Press 91-101.
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Conflict around goals of treatment
Requires a clear understanding of diagnosis and prognosis
Patient and family need to have a common understanding
Other treating teams need to be in agreement
May be long standing family dynamics
May be complex dynamics among medical providers and
teams
Can be very labor intensive to sort out
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Giving up on effective treatment “too soon”
Differing thresholds among individuals, families, teams
Refusal of highly effective treatment• Clearly permitted
• High level of consent and understanding
Special case of children
Special case of the never capacitated (in US)• Historical under-treatment
• Current overly aggressive medical treatment
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Requests for Continued Aggressive, Near Futile Treatment
Patient or family refusal to “give up”
Exaggerated faith in medical technology
Lack of trust in the medical system
Desire to “not go gently into the night”
Family conflict
Requests for Assistance in DyingWill You Help Me Die?
Full exploration; Why now?
Potential meaning of the request• Uncontrolled symptoms• Psychosocial problem• Spiritual crisis• Depression, anxiety
Potential uncontrolled, intolerable suffering
Huge potential for counter-transference issues
Requests for Assistance in DyingWill You Help Me Die?
Insure palliative care alternatives fully explored
Search for the least harmful alternative
Respect for the values of major participants
Patient informed consent
Full participation of immediate family
Potential Last Resort Options
Accelerating opioids to sedation for pain
Stopping life-sustaining therapy
Voluntarily stopping eating and drinking
Palliative sedation sedation
Physician-assisted suicide
Voluntary active euthanasia
Some Data from Oregon(Tolle S et. Al. J Clin Ethics.2004;15:111-8)
1/500-1000 deaths by PAD
1/50 talk with their doctor
1/6 talk to their families
MOST PEOPLE WANT TO TALK
VERY FEW ULTIMATELY ACT
PALLIATIVE OPTIONS OF LAST RESORTThe Need for Safeguards
Protect vulnerable from error, abuse, coercion
Ensure access and adequacy of palliative care
Risks cited for PAD are also present for other last resort options
Balance flexibility and accountability
Balance privacy and oversight
PALLIATIVE OPTIONS OF LAST RESORTCategories of Safeguards
Palliative care accessible and found to be ineffective
Rigorous informed consent
Diagnostic and prognostic clarity
Independent second opinion (palliative care specialist)
Documentation and review
Case Example
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Case Example- BB
BB was a 45 year old fiercely independent man who had surgery and
radiation for a brain tumor in his early 20’s
He was cured and did very well leading a very active and full life
About 8 years ago he began to develop slow deterioration of his brain
and his physical functioning with a process similar to ALS such that he
now needed help with almost all of his adl’s
He saw correctly that he was progressively losing his independence, and
wanted to know what options he had for potentially ending his life
He had a strong relationship with his PCP thought it was reasonable for
him to end his life, but was uncertain how to proceed
He requested a palliative care consultation
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Initial Palliative Care ConsultationPossibility vs Genuine Request
No overwhelming physical suffering
Becoming progressively debilitated (which he hated)
Wanted to know what his “last resort” options were
Committed to helping him find an escape when the time comes
Met regularly for ongoing care with PCP
Met every six months with palliative care to discuss status
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Two years later… “I am ready now”
Why now?• No overwhelming physical symptoms
• No depression, anxiety or delirium
• Progressive debility, loss of independence
• His thinking was clear and consistent with past values
Explore palliative options of last resort
• No symptoms to aggressively palliate
• No life sustaining treatments to stop
• No overwhelming immediate symptoms to sedate
• Would not be able to swallow enough medicine if PAS legal
• Legal risk of VAE was prohibitive (in US)
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“I am ready now”
Explored the option of voluntarily stopping eating and drinking• He had a lot of will power
• Eating and drinking was becoming challenging anyway
• No immediate physical suffering
• Primary physician and family very supportive of his decision
Complexities• Staff caring for him at home would not support
• Admit him to palliative care unit (staff buy in needed)
• Administration also willing
• Primary care and palliative care physicians both attended
• Ethics consult to ensure all bases covered
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The process unfolding
Took about 2 weeks• Initially very clear minded and engaged
• Meaningful goodbyes to family and friends
• Eventually became very weak and unresponsive
• Dry mouth was main symptom to palliate
• Some delirium toward the very end
Overall family was very satisfied and appreciative
Staff found it meaningful and less frightening than they thought
Primary physician felt very supported by the process
Specialist vs Generalist Palliative CareThe Bottom Line
Palliative care should be part of the treatment plan for all seriously ill patients
All clinicians (primary care and specialists) who care for seriously ill patients should know how to do basic palliative care
Specialist palliative care consultation should be available to help manage difficult symptoms and more challenging decision-making
Partnership between palliative care clinicians and other clinicians has the potential to improve care and increase patient options
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References
1. Quill TE, Abernethy AP. Generalist plus specialist palliative care--creating a more
sustainable model. New England Journal of Medicine 2013;368:1173-5.
2. Quill TE, Lo B, Brock DW. Palliative options of last resort: a comparison of voluntarily
stopping eating and drinking, terminal sedation, physician-assisted suicide, and
voluntary active euthanasia. Jama 1997;278:2099-104.
3. Back AL, Curtis JR. When does primary care turn into palliative care? West J Med
2001;175:150-1.
4. Lo B, Quill T, Tulsky J. Discussing palliative care with patients. ACP-ASIM End-of-Life
Care Consensus Panel. American College of Physicians-American Society of Internal
Medicine. Ann Intern Med 1999;130:744-9.
5. Meier DE, Back AL, Morrison RS. The inner life of physicians and care of the seriously
ill. Jama 2001;286:3007-14.
6. Morrison RS, Meier DE. Clinical practice. Palliative care. N Engl J Med 2004;350:2582-
90.