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

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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.

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