RESIDENTamp FELLOWSECTION

Section EditorMitchell SV ElkindMD MS

Alexis Dallara MDDorothy Weiss Tolchin

MD EdM

Correspondence toDr Dallaraamd9036nyporg

Emerging Subspecialties in NeurologyPalliative care

As we work to find cures for so many devastating neu-rologic injuries and diseases our patients suffer tremen-dously on a daily basis Individuals with conditionsincluding stroke multiple sclerosis Parkinson disease(PD) muscular dystrophies amyotrophic lateral sclero-sis (ALS) and nervous systemmalignancies share a hostof physical emotional and existential symptoms thatcan be difficult to treat In addition patients and theirfamilies face the realities of loss of function loss of abil-ity to communicate and lifespans limited by the neu-rologic diagnosis or complications related to it (egdysphagia immobility infection) We may not alwaysbe able to reverse damage to the nervous system but wecan optimize quality of life for our patients by provid-ing expertise in communicating difficult news painand symptom management and advance planningand end-of-life care

Palliative care is an approach to caring for a patientwith a life-limiting illness from the time of diagnosisthrough family bereavement support Palliative care clini-cians are trained experts in patientfamily-centered com-munication conflict resolution advanced managementfor symptoms including pain dyspnea nauseaemesisconstipation sialorrhea pressure sores pruritus delir-ium anorexia fatigue depression anxiety and spiritualdistress planning for anticipated and unanticipatedchanges in patient status facilitating a peaceful deathand providing bereavement services Palliative care is typ-ically provided by a multidisciplinary team headed by apalliative carendashtrained physician The team can includenurses social workers chaplains complementary andalternative medicine providers case managers physicaltherapists occupational therapists speech therapistswound specialists psychologists dietitians and othersPalliative care is available through inpatient consultationoutpatient clinic visits and occasionally through special-ized palliative home care Patients with a prognosis of lessthan 6 months are eligible for additional supportive serv-ices through hospice care in the home or in a dedicatedhospital unit or facility

Both family caregivers and clinicians have describedthe unmet palliative care needs of the neurology patientpopulation Currently unmet needs exist across diagnosesand include clear communication regarding diagnosis and

prognosis advanced pain and symptom managementand planning for end of life12 Pain for example whilenot traditionally believed to affect individuals with PDand ALS has been found to profoundly affect individualswith both diagnoses A recent retrospective study docu-mentedmoderately severe or worse pain in the lastmonthof life in 42 of patients with PD and related disordersand in 52 of patients with ALS Twenty-seven percentof the patients with PD and related disorders and painreceived no pain medications and 19 of the patientswith ALS with pain received no pain medications3

The American Academy of Neurology calls on neu-rologists to acquire basic palliative care skills ldquomanypatients with neurologic diseases die after long illnessesduring which a neurologist acts as the principal or con-sulting physician Therefore it is imperative that neu-rologists understand and learn to apply the principlesof palliative medicinerdquo4 While neurologists can alsoconsult and collaborate with palliative care colleaguesin caring for patients there is great value in neurologistsbecoming involved directly in palliative care A neurol-ogistrsquos clinical experience poises him or her to bestunderstand and support patient experiences across thelifespan the course of neurologic disease is differentfrom the course of many other diseases (cancer heartdisease lung disease) typically treated by palliative careclinicians

There are several unique aspects of palliative care inneurology as compared with palliative care in otherpatient populations First neurologic disease can havea prolonged and often-fluctuating course characterizedby unexpected declines and gradual accumulation ofimpairments Patients may require more frequent griefsupport for repeated losses than patients with more pre-dictable disease courses Second there can be enormousprognostic uncertainty in neurologic diagnoses withfew validated prognostic markers This creates a formi-dable challenge in preparing for the last months to yearsof life and makes careful monitoring of neurologic statusparticularly important Finally because neurology pa-tients can lose mobility communication ability andcognitive function long before death they may be seenless frequently in ambulatory settings during the lastphases of progression of disease and opportunities for

From New York Presbyterian HospitalColumbia University Medical Center New York

Go to Neurologyorg for full disclosures Funding information and disclosures deemed relevant by the authors if any are provided at the end of the article

640 copy 2014 American Academy of Neurology

advance decision-making about end-of-life treatmentsand location for last days of life can be lost unless care-fully attended to early in the disease process

Rigorous data on the optimal timing of palliative careintervention and the impact of palliative care interven-tions in neurology are only beginning to emerge A pro-spective study on the impact of early palliative care insmall-cell lung cancer recently showed improvement inquality of life and mood and less use of aggressive treat-ments at end of life5 Extrapolation to neurologic condi-tions especially those with largely overlapping symptomburden with small-cell lung cancer (eg glioblastomamultiforme) suggests that early palliative care involve-ment could affect these neurology patients in similarlypositive ways

Expert opinion in neurology calls for early involve-ment of palliative care in the management of life-limiting catastrophic and degenerative neurologic diag-noses Unfortunately lack of education and experiencein palliative care among neurologists contributes to theongoing underutilization of palliative care for patientswith long-term neurologic conditions67

The Accreditation Council for Graduate MedicalEducation (ACGME) requires neurology residency pro-grams to provide training in end-of-lifepalliative careTypical palliative care didactic lecture topics includedecision-making around advance directives runningfamily meetings managing pain and other symptomsand identifying and managing symptoms of dyingTypical clinical rotations involve joining an inpatient pal-liative care consult team and seeing a mix of diagnosesmostly oncology cardiology pulmonary and neurologyHowever only about half of neurology residency pro-grams offer didactic experiences in palliative care Fewerthan 5 provide internal clinical rotations and fewerthan 3 provide external clinical rotations8

MD and DO adult and child neurology residencygraduates are eligible to apply for ACGME- andAmerican Osteopathic Association (AOA)ndashaccreditedpalliative care fellowship training According to theAmerican Academy of Hospice and PalliativeMedicineas ofMay 2012 there are 78 ACGME-accredited and 7AOA-accredited programs with more than 234 posi-tions available9 Fellowship applications are submittedvia the Electronic Residency Application Service andare typically submitted during postgraduate year(PGY) 3 for a PGY-5 fellowship position Mid-careerapplications are accepted as well

Fellowship training is generally 1 year althoughsome programs offer an optional additional researchyear Some programs allow fellows to combine the pal-liative care fellowship with other medical subspecialtyfellowships or with a public health or geriatrics focusAll palliative care fellowships include clinical anddidactic training in advanced pain and symptommanagement communication and conflict resolution

and interdisciplinary teamwork Symptommanagementfocuses on but is not limited to pain nauseaemesisconstipation pruritus dyspnea delirium fatigue ano-rexia sialorrhea seizures incontinence pressure ulcersand active dying

The ACGME requires that fellows see adult andpediatric patients with a broad range of life-limiting diag-noses including neurologic diagnoses which in ourexperience tend to comprise 5ndash10 of patientsFellows see patients in the inpatient and ambulatorysettings as well as in dedicated hospicepalliative careunits and in patient homes Fellows must also followseveral patients longitudinally A scholarly project isrequired which can be in the form of research presen-tation or committee membership Fellows participate ininterdisciplinary team meetings and are taught palliativecare skills by both physicians and nonphysicians

After completing the year of palliative medicine train-ing fellows are eligible to sit for the Hospice and Pallia-tive Medicine subspecialty examination offered by theAmerican Board of Psychiatry andNeurology (ABPN)10

The ABPN offered the first Hospice and PalliativeMedicine examination in 2008 and offers it nowevery other year Fellowship training is now requiredin order to be eligible to sit for the examinationbecomeboard-certified

Currently fewer than 1 of neurologists are board-certified in hospice and palliative medicine10 and fewerthan 2 of palliative care clinicians are neurologistsThe need for neurologists to provide palliative care forpatients and families is expanding as the burden ofchronic and neurodegenerative diseases increases andas the population ages Symptom management andpatient and family support can begin at the time ofdiagnosis in life-altering neurologic disease if cliniciansare trained to provide it and it can be can offeredconcurrently with disease-modifying treatments

Every neurologist has the opportunity to apply palli-ative care skills in any setting in which neurologistswork Neurologists with board certification in hospiceand palliative medicine have the additional opportuni-ties to run palliative care teams in hospitals in ambula-tory care settings and for home care organizationsand to advocate most strongly for our sickest neurol-ogy patients Because the subfield of palliative care inneurology is so nascent opportunities for researchand leadership abound Neurologists are needed tocontribute their expertise to the palliative care body ofknowledgemdashexpertise about disease diagnosis and man-agement advances in treatments and prognosis for neu-rologic disease and the sharing of care for patients withlife-limiting neurologic disease Most importantly bydirectly teaching their trainees and colleagues and bytheir example neurologists can continue to pursue therelief of suffering for neurology patients and familiesstricken with ongoing devastating loss

Neurology 82 February 18 2014 641

AUTHOR CONTRIBUTIONSDr Dallara study concept and design acquisition of data analysis

and interpretation critical revision of the manuscript for important

intellectual content study supervision Dr Tolchin study concept

and design acquisition of data analysis and interpretation critical

revision of the manuscript for important intellectual content study

supervision

STUDY FUNDINGNo targeted funding reported

DISCLOSUREThe authors report no disclosures relevant to the manuscript Go to

Neurologyorg for full disclosures

Received May 9 2013 Accepted in final form September 6 2013

REFERENCES1 Payne S Burton C Addington-Hall J Jones A End-of-life

issues in acute stroke care a qualitative study of the experiences

and preferences of patients and families Palliat Med 201024

146ndash153

2 Kumpfel T Hoffman LA Pollman W et al Palliative care

in patients with severe multiple sclerosis two case reports

and a survey among German MS neurologists Palliat Med

200721109ndash114

3 Goy ER Carter J Ganzini L Neurologic disease at the end

of life caregiver descriptions of Parkinson disease and amy-

otrophic lateral sclerosis J Palliat Med 200811548ndash554

4 The American Academy of Neurology Ethics and Humani-

ties Subcommittee Palliative care in neurology Neurology

199646870ndash872

5 Temel JS Greer JA Muzikansky A et al Early palliative

care for patients with metastatic non-small-cell lung can-

cer N Engl J Med 2010363733ndash742

6 Turner-Stokes L Sykes N Siber E Khatri A Sutton L

Young E From diagnosis to death exploring the interface

between neurology rehabilitation and palliative care in

managing people with long-term neurological conditions

Clin Med 20077129ndash136

7 Borasio GD The role of palliative care in patients with

neurological diseases Nat Rev Neurol 20139292ndash295

8 Schuh LA Adair JC Drogan O Kissela BM

Morgenlander JC Corboy JR Education research

neurology residency training in the new millennium

Neurology 200972e15ndashe20

9 Fellowship Program Directory Available at httpwww

aahpmorgfellowshipdefaultfellowshipdirectoryhtml

Accessed July 21 2013

10 American Board of Psychiatry and Neurology Inc Initial

certification statistics Available at wwwabpncomcert_

statisticshtml Accessed July 21 2013

642 Neurology 82 February 18 2014

AUTHOR CONTRIBUTIONSDr Dallara study concept and design acquisition of data analysis

and interpretation critical revision of the manuscript for important

intellectual content study supervision Dr Tolchin study concept

and design acquisition of data analysis and interpretation critical

revision of the manuscript for important intellectual content study

supervision

STUDY FUNDINGNo targeted funding reported

DISCLOSUREThe authors report no disclosures relevant to the manuscript Go to

Neurologyorg for full disclosures

Received May 9 2013 Accepted in final form September 6 2013

REFERENCES1 Payne S Burton C Addington-Hall J Jones A End-of-life

issues in acute stroke care a qualitative study of the experiences

and preferences of patients and families Palliat Med 201024

146ndash153

2 Kumpfel T Hoffman LA Pollman W et al Palliative care

in patients with severe multiple sclerosis two case reports

and a survey among German MS neurologists Palliat Med

200721109ndash114

3 Goy ER Carter J Ganzini L Neurologic disease at the end

of life caregiver descriptions of Parkinson disease and amy-

otrophic lateral sclerosis J Palliat Med 200811548ndash554

4 The American Academy of Neurology Ethics and Humani-

ties Subcommittee Palliative care in neurology Neurology

199646870ndash872

5 Temel JS Greer JA Muzikansky A et al Early palliative

care for patients with metastatic non-small-cell lung can-

cer N Engl J Med 2010363733ndash742

6 Turner-Stokes L Sykes N Siber E Khatri A Sutton L

Young E From diagnosis to death exploring the interface

between neurology rehabilitation and palliative care in

managing people with long-term neurological conditions

Clin Med 20077129ndash136

7 Borasio GD The role of palliative care in patients with

neurological diseases Nat Rev Neurol 20139292ndash295

8 Schuh LA Adair JC Drogan O Kissela BM

Morgenlander JC Corboy JR Education research

neurology residency training in the new millennium

Neurology 200972e15ndashe20

9 Fellowship Program Directory Available at httpwww

aahpmorgfellowshipdefaultfellowshipdirectoryhtml

Accessed July 21 2013

10 American Board of Psychiatry and Neurology Inc Initial

certification statistics Available at wwwabpncomcert_

statisticshtml Accessed July 21 2013

642 Neurology 82 February 18 2014

DOI 101212WNL0000000000000121201482640-642 Neurology

Alexis Dallara and Dorothy Weiss TolchinEmerging Subspecialties in Neurology Palliative care

This information is current as of February 17 2014

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