Deep Brain Stimulation and Ethics: Perspectives from a Multisite Qualitative Study ofCanadian Neurosurgical Centers
Emily Bell1, Bruce Maxwell1, Mary Pat McAndrews2, Abbas Sadikot3, Eric Racine1,4,5
os
hrccdcbchpooa
psvDtcrtp2
npald
pac
�
INTRODUCTION
Deep brain stimulation (DBS) is an ap-proved and widely accepted neurosurgicalintervention to treat severe and treatment-refractory symptoms of Parkinson diseaseor essential tremor. More than 50,000 pa-tients worldwide have now been treatedwith DBS, which is favored for its reversibleand adjustable mechanism to treat motorsymptoms associated with these disorders(22). However, DBS is still an invasive pro-cedure that is accompanied by surgical risk,entails substantial costs, requires patientcommitment to follow-up, and necessitatescare from specialized and qualified centers(22). The fact that, collectively, more andmore patients undergo implants and livewith DBS devices, along with a growing ap-preciation that there may be new or unre-solved ethical challenges faced by providers
Abbreviations and AcronymsDBS: Deep brain stimulationICD: Implantable cardioverter defibrillators
From the 1Neuroethics Research Unit, Institutde recherches cliniques de Montréal, Montréal,
Québec, Canada; 2Division of Brain Imaging & BehaviourSystems–Neuroscience, Toronto Western ResearchInstitute, Toronto, Ontario, Canada; 3Montreal NeurologicalInstitute and Hospital, McGill University, Montréal, Québec,Canada; 4Department of Medicine and Department of
ocial and Preventive Medicine, Université de Montréal,ontréal, Québec, Canada; and 5Department of Neurology
and Neurosurgery, Medicine, and Biomedical Ethics Unit,McGill University, Montréal, Québec, Canada.
To whom correspondence should be addressed:Eric Racine, Ph.D. [E-mail: [email protected]]
Citation: World Neurosurg. (2011) 76, 6:537-547.DOI: 10.1016/j.wneu.2011.05.033
ugh examination of important ethical andocial issues (3, 17).
Several ethical and social issues of DBSave previously been identified in the neu-osurgical, bioethics, sociological, and psy-hological literature (3, 17). Some of thehallenges occur in selecting the best can-idates for DBS and obtaining informedonsent from patients, whereas others maye created by resource issues and the highost of DBS (3). Additional discussionsave focused on the impact and balance ofublic information about DBS (3, 4, 18) andn the potential psychological implicationsf DBS, including effects on personhoodnd narrative identity (1, 3, 8, 20, 21). In
� OBJECTIVE: Deep brain stimulatiointervention for motor disorders suchpsychiatric uses for DBS combinedexpensive procedure creates importadelivery of care that need further examcare provider perspectives on ethical a
� METHODS: Health care providers warticipated in a semistructured internd social challenges of DBS. A conducted.
RESULTS: Several key ethical issueallocation, were identified by memdescribed challenges in selecting paevidence-based guidance regardingVaried contexts of resource allocatiomas, were also reported. In additiocommunity was highlighted as a sourcthe need for coordinated long-term ca
� CONCLUSIONS: This study providechallenges that providers face in the ucenters. We propose actions for healthpostoperative monitoring of patients wtives in DBS would complement the uncontribute to best practices, for patieallocation.
ddition, emerging indications for DBS in T
, DECEMBER 2011 ww
sychiatry, including in obsessive-compul-ive disorder, for which humanitarian de-ice exemption was granted by the Food andrug Administration in 2009, are expected
o impact the range of ethical and socialhallenges faced in the field of DBS. As aesult, some issues discussed previously inhe context of psychiatric surgery as well asotential new concerns and challenges (3,6) will resurface.
Despite the fact that the bioethics andeurosurgical literature have identified im-ortant ethical and social challenges thatrise in the practice of DBS, we have veryittle knowledge about how providers ad-ress ethical and social issues in the field.
BS) is an approved neurosurgicalarkinson disease. The emergence ofthe fact that it is an invasive and
thical and social challenges in theon. We endeavored to examine healthocial challenges encountered in DBS.
ng in Canadian DBS surgery programsto identify and characterize ethical
nt analysis of the interviews was
ch as patient screening and resourceof neurosurgical teams. Providers
ts for DBS on the basis of unclearavioral issues or cognitive criteria.cluding some very challenging sche-he management of patients in theethical and clinical complexity, given
sights into the complexity of ethicalf DBS across different neurosurgical
e providers for the long-term care andDBS. More data on patient perspec-tanding of key challenges, as well aselection, management, and resource
EMILY BELL ET AL. DEEP-BRAIN STIMULATION AND ETHICS
the literature and actual clinical practice ex-ists that needs to be scrutinized. Accord-ingly, our study examined health care pro-vider perspectives and experiences withregards to key ethical and social challengesin DBS in major Canadian neurosurgicalcenters.
METHODS
An invitation to participate in the study wassent (by e-mail) to health care providers inactive DBS centers in Canada. In Canada,most DBS is performed in the major aca-demic medical centers of each province.This means that there are approximatelyone or two centers per province, and insome cases all of a region (i.e., the Atlanticprovinces) is served by one center. Becausewe were also interested in characterizingemerging ethical challenges with psychiat-ric and novel uses of DBS (manuscript inpreparation [E.B., M.P.M., A.S., E.R.]), wefocused our recruitment on those major ac-ademic centers who were involved in theseapplications (six centers across six differentprovinces). We identified participants withthe help of local investigators affiliated withDBS programs in Canada and through websearches of neurostimulation programs inCanada. Unfortunately, this recruitmentstrategy does not enable us to determinehow many individuals were ultimately in-vited to participate but declined. We hadone active neurostimulation site at whichwe were unable to identify participantsfrom publically available information andwhere local colleagues declined to partici-pate or to disseminate the invitation.
Health care providers in the study com-pleted a semistructured interview with amember of the research team. Interviewswere conducted from late 2007 through2009. The general aim of the interview,which was divided into three parts, was tocharacterize the perspective of health careproviders on a range of ethical and socialissues in functional neurosurgery that usedneurostimulation. In the first part of the in-terview, participants were asked to describetheir involvement in the care of neurostimu-lation patients, which included identifyingthe types of patients under their care, whenthey consult with or manage patients orcaregivers, and how they interact with otherproviders at their institution in the field of
neurostimulation. In the second part of the
538 www.SCIENCEDIRECT.com
nterview, providers were asked to identifyertinent ethical and social issues in neuro-timulation and to discuss and describeheir perspectives on ethical and social chal-enges as they pertain to established uses ofeurostimulation (e.g., DBS for Parkinsonisease). Specifically, the interview guidedroviders through a range of issues, such as
nformed consent, evaluation of patients,isks and benefits, management of pa-ients, psychosocial factors, public under-tanding of neurostimulation, resource allo-ation issues, and health care access issues.ealth care providers were invited, in the
hird part of the interview, to identify and dis-uss existing and potential ethical and socialhallenges as they related to emerging uses ofeurostimulation (e.g., DBS for depression).articipants were also asked about the publicerception of neurostimulation and invited toiscuss their perspectives on the possible usef neurostimulation as a mood or cognitivenhancer. Finally, at the end of the interview,roviders were allowed to share and discussossible solutions or mechanisms of action toddress ethical and social issues in currentnd emerging uses of neurostimulation. Inhis report, we present the results as they per-ain to applications of DBS in movement dis-rders only.
The audio-recorded interviews were firstranscribed verbatim and then analyzed onhe basis of a conventional thematic quali-ative content analysis approach (9). A cod-
ing guide was elaborated to support thecontent analysis in which common issuesfrom the interviews were grouped together.The coding guide was developed on the ba-sis of several rounds of test coding to ensurevalidity and consistency, and final coding in-volved achieving consensus between two cod-ers (E.B., B.M.), with an arbitrator for dis-agreements (E.R.). Providers were also askedto complete a short questionnaire at the endof the interview, which invited them to ranknine ethical and social issues in the practice ofneurostimulation. We present the results ofthis questionnaire as Appendix 1.
Research ethics approvals were obtainedbefore the beginning of this study for eachtargeted site, and informed consent was re-ceived from all health care providers beforeparticipation. The identity of participants isprotected by an alpha-numeric code systemin which the letter identifies the site theybelong to and the number indicates the or-
der in which they were recruited (i.e., A1, b
WORLD NEUROSURGE
B2). We use qualitative examples to illus-trate salient or illustrative features of theinterview data.
RESULTS
Here we report results from five Canadiansites and 20 health care providers of a vari-ety of specialties, including neurology (n �4), neurosurgery (n � 4), psychiatry (n �2), nursing (n � 2), occupational therapyn � 1), neuropsychology (n � 5) and clin-cal neurosciences and neurophysiologyn � 2). The qualitative perspectives col-ected from health care providers on 11 eth-cal and social challenges in neurostimula-ion are summarized in Table 1. Theollowing data highlight three challengeseported in Table 1, where detailed qualita-ive data from the interviews sheds moreight on the nature of these ethical chal-enges.
atient Screening: A Key Challenge forrovidersur data suggest that motor criteria for the
election of DBS candidates are quite well de-ned in practice. By applying standardized
ools for which there is consensus (L-dopahallenge test and the Unified Parkinson Dis-ase Rating Scale), providers can delineateood candidates for DBS surgery. DBS gener-lly was identified as a last resort treatment foratients who experience refractory motor def-
cits. This was reported by a neuropsycholo-ist who stated, “[w]e are dealing with suchxtreme cases these things have been done aslast resort and nothing else” (A2). The ma-
ority of providers expressed this opinion, butfew alluded to the use of DBS in patients with
ess-advanced disease. They grounded thispinion in a new understanding of patient se-
ection in DBS. For example, one neurosur-eon stated that, “[. . .] in the past the ten-ency was to wait ‘til all else failed and theatient’s in major difficulties with their ownctivities [. . .] and then kind of do the surgerys a way to try to rescue them whereas moreecently the aim is to, well as soon as the med-cations are starting to become less predict-ble, while a patient’s still at work you operaten them to solve the problems that allow
hem to kinda continue in their workforce, sohat’s definitely been a major change in theandidates in the last five years” (E2).
Potential exclusionary factors seemed to
e much more uncertain. A lack of guidance
RY, DOI:10.1016/j.wneu.2011.05.033
PEER-REVIEW REPORTS
EMILY BELL ET AL. DEEP-BRAIN STIMULATION AND ETHICS
Table 1. Perspectives of Health Care Providers on Ethical and Social Issues in Neurostimulation
Patient screening: Establishing and applying criteria to screen patients
Evaluating potential candidates includes assessing motor symptoms and functioning, diagnosis, cognitive function, and psychological history.
Evaluation of motor symptoms is relatively straightforward and aided by standardized tools and established tests for response to DBS (L-dopa response).
Providers struggle with poorly defined cut-offs with regards to cognition, psychology, and sometimes age when determining suitability for the procedure.
Presence of cognitive decline, dementia, or psychological factors creates uncertainties for patient response.
Public understanding: Public understanding of the risks and benefits of DBS
Media representations can carry miraculous or one-sided stories and can set up unrealistic expectations for DBS among patients (4).*
Portrayal of DBS in the media may contribute to patient’s knowledge about programs, thereby increasing access (4).*
Public perceives DBS to be revolutionary (“as being the next great thing” [participant B2]; “people are in awe” [participant E3]) but misunderstandings about thefine details of the procedure and its effects can lead people to perceive DBS in threatening ways.
Providers have to address confused perspectives about the sci-fi or threatening nature of DBS disseminated in the media.
Economic issues: Cost-benefit analysis and resource allocation
Cost-benefit was argued by most on the basis that quality of life can be improved and make a “material difference” (C2) in patients undergoing DBS although inthe same regard a few providers suggested it was seen as important to recognize that DBS is a very expensive treatment to undertake for a quality of lifeimprovement.
Resource allocation and the ramifications of having adequate or inadequate resources varied between sites.
There were essentially three different perspectives communicated about resource allocation.
See Table 2 for additional details.
Mood and cognitive enhancement: The use of DBS to improve mood and cognition in the healthy
The risk of DBS used for enhancement purposed was seen as a definite risk.
Almost equally though, it was communicated that the concern that DBS would be used for enhancement was overstated, either because individuals would likelyturn to other means such as transcranial magnetic stimulation (TMS) or drugs first, or because regulatory measures or improper risk/benefit ratios would prohibitits use in healthy subjects for enhancement purposes.
Informed consent: Establishing and carrying out informed consent
Informed consent may be undermined by the fact that patients carry high expectations and are “desperate” (4).*
The information burden to be provided to patients and families is high and quite complex, and they must be informed about all possible physical andpsychological risks and the possible impacts of risks, as well as informed about issues over the long term with regards to managing their device.
Strategies used to help patients in the informed consent process include allowing them to question and interact with multidisciplinary providers, providingstructured educational material or access to other patients who have the device, and/or including the family in conversations about DBS.
It is unclear whether coercion by family members in the informed consent process is an issue faced by many providers. In some cases, the family was identifiedas being “too pushy” although in others providers suggest they can be not supportive enough. Health care providers may also, inadvertently, influence patients.
Safety and patient security: The assessment of risk and ensuring patient safety
There are both physical and psychological or cognitive risks associated with DBS.
The physical risks of surgery require attention because they may create dramatic consequences or can be permanent.
The psychological risks, including psychiatric or behavioral complications and cognitive decline, may be exacerbated in patients who have presurgical histories ofpsychiatric or behavioral problems or suffer from cognitive decline.
Patients and families may have difficulty defining the psychological risks of DBS.
Patients and families may have difficulty understanding the full impact of psychological effects.
Management of surgical procedure: Preoperative, operative, and postoperative management and care
Management of the device after surgery and when patients are in the community was the main aspect discussed.
The responsibility for device management in the community falls largely on the patient.
It is difficult to know how patients will be able to deal with device failures and unexpected events in the community.
Patients remain dependent on the treating team for advice, support and care over the course of the time they have a device.
See Tables 3 and 4 for additional details.
Content represents health care provider perspectives that were obtained by semistructured interviews performed by members of the team. The interview was informed by a previous reviewof ethical and social issues in neurostimulation and addressed the issues identified in the survey as well as any other challenge healthcare providers raised.
DBS, deep brain stimulation.*Data reported in detail elsewhere.
Continues
WORLD NEUROSURGERY 76 [6]: 537-547, DECEMBER 2011 www.WORLDNEUROSURGERY.org 539
(awpsctypalsypc
RSTe
pcltpctwcaiga
MoCMTw
PEER-REVIEW REPORTS
EMILY BELL ET AL. DEEP-BRAIN STIMULATION AND ETHICS
on appropriate selection criteria with re-gard to patients with cognitive decline or ahistory or presence of psychiatric illnesswas reported. For instance, one providerstated, “[t]here are no hard sort of exclu-sion criteria based on psychiatric diagnosisper se” (A5). The uncertainty of exclusionfor psychiatric and cognitive deficits can bechallenging for providers who must make adecision to refuse a patient for DBS whocould benefit from motor symptom im-provement but who may have cognitive orpsychological symptoms. As one neurosur-geon stated, “[. . .] it becomes practicallyimportant at later phases when you actuallyget early dementia or moderate dementia,and those patients have to be excluded fromthis type of surgery. So you know we aredealing with a motor dysfunction, and howdo you then [ex]clude someone with a cog-nitive dysfunction when in fact you want to
Table 1. Continued
Privacy and stigma: Respect of privacy and mitigat
Stigma was not discussed widely as a particuladevice or even to experience reduced stigma no
Commercial and legal issues: Patenting ownership
Widening indications for DBS is in the interest
Partnership with manufacturers is required to ad
Competition and the development of new devicetechnological advances.
More competition in the marketplace would cre
Importance of keeping distance from industry wresearch activities.
Health care delivery and access: Access to neuros
Access to neurostimulation is impacted by the b
Budgets have impacts on referrals into program
In some areas, primary care providers may notthey are under the care of a neurologist at an a
Interprovincial differences in access, and particuways provinces allocate devices and budgets fo
See Table 2 for additional details.
Psychosocial challenges for patients and families:
The presence of psychosocial challenges emerg
New conflicts may emerge after DBS within rel
Adjustment difficulties for the spouse may be li
Content represents health care provider perspectives thatof ethical and social issues in neurostimulation and ad
DBS, deep brain stimulation.*Data reported in detail elsewhere.
mainly improve their motor dysfunction” g
540 www.SCIENCEDIRECT.com
A1). A central feature of this challenge waslso characterized by a neuropsychologistho stated that “[. . .] so we do screen outeople with cognitive deficits particularly aignificant degree of executive function be-ause of the concern that will affect not onlyheir cognition but their behavior [. . .], soou are denying a person a life-altering im-rovement in their motor function based onsmall literature. And it is not well estab-
ished what is the cut point that someonehould or should not have surgery, and soou are making decisions about limiting aatient’s access to treatment based on un-ertainty, really” (D3).
esource Issues: A Key Challenge forome Institutionshe issue of resource allocation and relatedconomic concerns brought to the fore-
stigma
ern of providers. Patients were deemed to be quitet outward appearance of physical symptoms had res
facturing of devices, and relationships with industry
ice manufacturers.
research in the field because of a lack of public fu
end on the size of the market but are driven forwar
re competitive costing.
fly highlighted, although it was recognized that pro
tion programs, influence of resource allocation, and
ary context.
nowledge of programs in DBS in their centers and tic university.
patient’s ability to access DBS in a closer center w.
and relational challenges, support needed througho
er surgery is something that most centers report at
ips between the patients and their families, particu
o a difficulty accepting that the patient has regained
btained by semistructured interviews performed by memberd the issues identified in the survey as well as any other c
round wide-ranging experiences. Some t
WORLD NEUROSURGE
roviders explained that they have facedhallenges related to resource limits for aong time, whereas others seemed to implyhat the resource limits they faced in theast have been overcome because of de-reases in the number of patients referred tohe program (Table 1). Resource limitsere often discussed in the context of their
onsequences on waitlists and patients, andvailable resources seemed to depend andmpact on access to neurostimulation pro-rams (see Table 2 for more detailed datand explanation of intersite variability).
anagement of the Procedure: A Focusn Patient Device Management in theommunity and Care with Devicealfunction or Failure
he qualitative data revealed a situation inhich patients are responsible for some of
rtable with the idea of having an implanted
for the high cost of research entailed.
arketing of new indications and new
are often dependent on industry funding for
ls to programs
re, patients may be more likely to access care if
is out of province is limited by differences in the
ployment adaptations
to some degree.
ith the spouse.
pendence or the loss of role as caregiver.
team. The interview was informed by a previous reviewe healthcare providers raised.
ion of
r conc comfow tha olved.
, manu
of dev
vance nding
s dep d by m
ate mo
as brie viders
timula referra
udget
s.
have k herefocadem
larly a hichr DBS
Social ut, em
ing aft least
ationsh larly w
nked t inde
were o s of thedresse halleng
he long-term care and management of
RY, DOI:10.1016/j.wneu.2011.05.033
eooi
SDOwatps
ci
D
Ihwcpait
’t the
PEER-REVIEW REPORTS
EMILY BELL ET AL. DEEP-BRAIN STIMULATION AND ETHICS
their devices (e.g., modulating stimulationparameters, monitoring behavioral side-ef-fects and device failures; see Table 3 formore detailed qualitative data). Moreover,providers discussed concerns related to pa-tients’ abilities to address and to access re-sources and care when device problems,failures, or uncertainties arise in the com-munity. Our data also implied that patientsin the community do not always seem toknow how to manage their devices or unex-pected effects or events, nor do all patientshave confidence in managing this device in-dependently of the treating team. To facili-
Table 2. Differing Perspectives on and Im
Scenario one: Providers facing resource alloc
“But nevertheless there are more patients that
“In any rate it was recognized that in order to d
Ramifications:
Surgeon and operating room time not used for
“For a 3-month period our operating room wasparticular procedure and that was not used” (A1
Wait times are increased, unpredictable, and m
“They definitely have to go on a waiting list, anhave to do X number over the next month, so ifour spots this year then next year there will be
“[. . .] in some cases people are deteriorating bthey might no longer be eligible for the devices
Referrals are not proactively sought because thi
“But the sad part is that we have extremely effthem know I’m here basically because I know t
Scenario two: Providers facing resource limits
“The only limitation in our current system is tha
“You want a sober second thought but if the w
“There is no question, if we could do it faster tprocedure, that doesn’t seem unreasonable to m
Scenario three: Providers reporting they do no
“We don’t have uh we sort of do have a fixed
“The um, I mean every year we do about the sa
Why is this not a challenge:
Limit the number of patients by using a strict s
“We’ve essentially limited the patients, the num
Referrals have decreased and there is a lack of
“I think there have been circumstances where timplanted in each fiscal period. Umm so in thedown to a trickle so we don’t run in to that iss
“[. . . ] so the population here it – I don’t knowaren’t being referred because the knowledge isn
tate a patient’ ability to address unexpected t
WORLD NEUROSURGERY 76 [6]: 537-547
ffects or side effects, good managementver the long term depends on the supportf the health care and treating team accord-
ng to providers (Table 4).
olutions to Tackle Ethical and Socialilemmas in DBSbservations were made about ways inhich health care providers handle ethical
nd social issues in DBS or ways in whichhe handling of these issues might be im-roved. These observations and practicaluggestions largely focused on two solu-
tions of Resource Allocation in DBS
challenges (Sites A and B)
the surgery than there is a budget within a hospit
kind of comprehensive care of patients we really n
en, you know, of course other things will take the p
se patients to be re-evaluated before surgery
have to be prepared and they are told in advancere not available and on the waiting list, then we neless availability for these devices” (A5).
n the time that they are originally screened and thd on the criteria–being able to implant them in peo
ld overwhelm surgical capacity
interventions that we cannot deliver adequately toe already maximized the number of patients that we
iewing these as less problematic (Site C)
have two surgeons who do this, it is our time�how
is too short people don’t have time for that. But I
ould be great. We are dealing with a chronic diseas2).
e resource challenges (Sites D and E)
but we don’t really. [. . .] So I never worried about
umber of cases” (D1).
g criteria
by means of very strict screening. I mean that’s how
ness among referring physicians of the program
s impacted us where a budget has been imposed ahat has impacted us. But this has changed and ourly” (E3).
ctuates – but it certainly isn’t up to par, I think refre that there are other options? (E1).
ions: the effective application of multidis- p
, DECEMBER 2011 ww
iplinary teamwork and the benefits of lim-ting DBS to expert centers.
ISCUSSION
n this study, on the basis of interviews withealth care providers from five DBS teams,e identified a range of ethical and social
hallenges in the practice of DBS. Overall,roviders expressed that patient selection iscritical challenge and they struggle in us-
ng poorly defined criteria for excluding pa-ients from surgery. In addition, health care
any given year to allow [. . .]” (A1).
more resources.” (B2).
but in theory there is an operating room for this
e may get a call at any point in time that wego to the next person because if we don’t do
e that the operating room can be set up so thato are not too far deteriorated” (B2).
ts, and I don’t even advertise at all, I don’t letocated within this artificial system” (A1).
time do we have to do this” (C3).
hat a period of waiting is not a bad thing” (C3).
hey have to wait four months or six months for a
over budgets” (D1).
e limited the numbers” (D1).
y certain numbers of stimulators were to bef the people being referred to surgery has come
till needs to be worked on, a lot of the patients
plica
ation
require al on
o this eeded
DBS
left op lace,).
ay cau
d they that wyou a ed toeven
etwee e tim, base ple wh
s wou
ective patienhat I’v re all
but v
t we much
ait list think t
hat w e. If te” (C
t fac
budget going
me n
creenin
bers we’v
aware
hat ha nd onlpast t sort oue late
it flu erral s
roviders working at different sites de-
w.WORLDNEUROSURGERY.org 541
lDr
LTeto
esannipbsr
dolla
PEER-REVIEW REPORTS
EMILY BELL ET AL. DEEP-BRAIN STIMULATION AND ETHICS
scribed almost completely different con-texts of resource allocation, impacts of re-source shortages, and concerns related toaccess for neurostimulation. Other issuesdiscussed by providers related to the exis-tence of possible obstacles for informedconsent (4), and the consequences of acutephysical and psychological risks of DBS onthe patient and family. In general, however,providers placed less emphasis on chal-
Table 3. Patient and Family Responsibilit
Patients: Modulating their parameters of stimulatio
“[. . .] the patients they are given a patient cenvironment that could affect their system by tgiven the option to control the strength of the s
“With respect to motor patients, I think they ar
Patients: Monitoring device failure
“[. . .] if you have Parkinson’s disease and theinvestigate or see, or the patient can see that t
Patients and families: Monitoring behavioral side-e
“[. . .] so even when I’m programming, I am verthey need to call me” (D6).
Patients and families: Insuring care and cost of th
“Now they have to put the batteries for that counderstand prior to surgery. They’re also encoustolen or they leave it in their coat pocket andcan be quite costly, upwards around a thousand
Table 4. Challenges Faced by Patients an
Managing device malfunction
“Sometimes we have seen some patients that s
“Anything with electromagnetic interference can aon again and away they go. But you know untilcourse they call and they want to make sure thatneed that reassurance that everything’s working w
Managing care by nonexpert clinicians
“A lot of people are afraid of it, or nervous thais going through surgery, then we will get calls
“[. . .] one of the things we do find it that evenobody else wants to deal with them. Even if tthey really do become quite dependent on us b
Uncertainty and anxiety created by responsibility o
“They are just, they don’t like when they are dethey can’t reach us I think” (C4).
“Some of them have programmable devices thastimulation in some cases is for patients to be
“[. . .] my days are full of either impromptu or sthe first year or so it settles down and patients
DBS and feel very comfortable and when there is som
542 www.SCIENCEDIRECT.com
enges raised by the commercialization ofBS devices, conflict of interest, or concerns
elated to privacy and stigma (Table 1).
imitationshere are certain limitations to be consid-red in the interpretation of the results ofhis study. Admittedly, this study includednly a small number of participants. How-
r Managing Their Device
ontrolling their device
er, which can reactivate their system if it shouldit off and then they’ve got their controller with thetion within limitations” (E1).
iven ‘rescue magnets’ which means that if any unto
ulator fails and the tremors start right away. . . .s a failure in the device” (B3).
with the spouse that I want their feedback and if
ce controller
r because they run on little nine-volt batteries, whicto place this thing in their household insurance uner the coat and it gets ruined, or broken in somers after shipping and handling” (E1).
oviders in Device Management While Pati
y are not sure if they are doing it properly or if the
he system. And they’re all aware of this and all they dappens to you the first time [. . .] you’re just cringinghing’s working right and did I damage it and if they had nothing is going to happen to them as a result of a
might do something, you know. So we will often gefrequently: ‘we don’t know what to do’ and that so
hey go through Emergency or if they go to a famme to Emerg [Emergency] they can be sent home oras I said, nobody else wants to touch them with a
ce management
say, with airport security or things like that where
can adjust and they do it on a minute to minute bao reduce their medication. People can get confused
led office visits [. . .] and often times it’s just they nyou know, pretty confident in the own skin with th
ething that goes wrong they do call but not in quite such
WORLD NEUROSURGE
ver, as we recruited participants for thetudy, it became clear to us that DBS teamsre often small teams of providers that doot always share the same composition orumber of members (aside from each hav-
ng an identifiable neurosurgeon for therocedure). Moreover, providers may note exclusively associated with a neuro-timulation program (i.e., nurses and neu-opsychologists), and it is well known that
en to get turned off, [. . .] but there can be anturn it back on. And then some patients are also
side effect comes on they could shut it off” (A5).
is is the most striking condition where you can
otice a change in behavior with their spouse that
t a cost to the patients, that’s something theyersonal effects. [. . .] because if it is ever lost orhen they’re responsible for replacement and that
are Living in the Community
travel and stuff like that you know” (A2).
ke their thing out of their pocket and turn it backto happen and it happens and it’s a shock. And ofall, like they’re dependent that way, they constantlyctioning unit” (E1).
one call from a dentist of somebody, you know,hing” (C4).
tor, if they have a battery failure or something,I don’t know. I have no idea what to do here.’ Sooot pole” (C4).
is some uncertainty. They get really nervous is
ey get obsessed with it I suppose. The idea ofhat. It all requires a lot of attention” (C3).
hear you say that everything is ok. Usually aftern devices, become quite used to living with their
ies fo
n or c
ontroll happurning m totimula
e all g ward
stim So thhere i
ffects
y clear they n
e devi
ntrolle h is araged der plaund way, t
d Pr ents
ay the y can
ffect t o is tathat h for iteveryt ve a cell an malfun
t they t a phquite rt of t
n if t ily dochey co say ‘ecause ten f
f devi
aling, there
t they sis. Thable t with t
chedu eed tofeel, eir ow
a panic anymore” (E1).
RY, DOI:10.1016/j.wneu.2011.05.033
dept
mtapwt“pcvmmrdbiaocwo(pbeg(tlbn
cciappftaocbsEtboDc
tsparh(c
opctwfactafUbaDsmwpdnccbt
ISTntDitsHesdtadcwF(o
PEER-REVIEW REPORTS
EMILY BELL ET AL. DEEP-BRAIN STIMULATION AND ETHICS
there is a demand for more specialized neu-rosurgeons in Canada (27). In addition, aqualitative multisite study involving partic-ipants who represent the spectrum of care-givers involved in DBS inevitably faces aproblem of representativeness. Even whenwe only identified a single or few partici-pants in a specialty (i.e., one or two), we stillincluded the perspectives of these provid-ers. This is partly because our recruitmentwas not specifically designed to identifyparticipants on the basis of specialty butrather to identify individuals who were in-volved in the care of patients undergoingDBS by a snowball effect. In this way, thelocal investigator identified key members ofthe DBS team. Then, additional participantsat that site were identified by these individ-uals, and participants were asked to identifyothers. Therefore, if someone was identi-fied as active in the team, we attempted torecruit them, even in cases in which it was aperson in a specialty that had not partici-pated at another (or any other) site. In fact,in several cases, a participant’s specialty didnot always reflect his or her entire role onthe DBS team. We have revealed some be-tween-site differences, for instance, in thearea of resource allocation, but we realizethat these differences were determined bycomparisons between a small numbers ofsites.
Our qualitative data combined with ourquestionnaire data indicate that some is-sues created heightened concerns or prob-lems for health care providers and thereforerequire further consideration and discus-sion on the basis of the literature. Accord-ingly, in the following, we discuss: 1) thelack of clear guidance and practices for ex-clusion in patient selection for DBS; 2) in-consistencies in access to DBS surgery inthe Canadian environment; and 3) ethicaland professional responsibilities for devicemanagement and long-term care.
Lack of Clear Guidance and Practices forExclusion in Patient Selection for DBSProviders reported that a key day-to-day chal-lenge they face is selecting and screening thebest or most suitable candidates for DBS. Al-though they reported that standardized toolsand accepted guidelines can be used to evalu-ate patients’ motor symptoms, severity of ill-ness, and probability of response, some pro-viders also reported that they are challenged
when determining when an appropriate can- D
WORLD NEUROSURGERY 76 [6]: 537-547
idate, from a motor perspective, should bexcluded on the basis of cognitive decline orsychiatric or behavioral symptoms (or his-
ory of symptoms).In stark contrast to the motor assess-ent, providers in our study conveyed that
he assessment of cognitive deficits, as wellpsychiatric factors, are poorly defined forotential candidates of DBS. Consistentith this observation, some authors report
hat defining acceptable cognitive deficits isperhaps the most controversial aspect ofatient selection” (15) and that “no currentonsensus opinion [exists] on safe cut-offalues on neuropsychiatric testing to deter-
ine patients at higher risk” (23). All thisust be considered in the context that neu-
ocognitive decline is a feature of Parkinsonisease itself. The main predicament seems toe that although neuropsychological testing,
ncluding a battery of cognitive function testsnd behavioral examinations, is used and rec-mmended in the assessment of potentialandidates, there is little understanding ofhat tests or scores predict neuropsychiatricr behavioral outcomes after DBS in patients10). Nonetheless, it is also well accepted thatatients with preexisting cognitive deficits orehavioral problems (i.e., depression, anxi-ty, or obsessive-compulsive disorder) are atreater risk of decompensation after surgery11, 16, 23). From a provider’s perspective,his is an important confirmation of the chal-enges that underlie patient selection and haveeen a focus of discussion in the internationaleurosurgical literature.
In our study, providers wrestled with de-isions about which patients should be ex-luded while also recognizing that exclud-ng patients is a means to mitigate possibledverse events such as cognitive decline orsychological symptoms, which may occurostoperatively and impact patients and
amilies. At least, the indication that pa-ients may have cognitive deficits or psychi-tric factors predisposing them to poorerutcomes may be used by providers toounsel patients and families about possi-le risks and/or to put in place additionalupports or monitoring after surgery (10).ven so, providers in our study suggested
hat some patients and families may still note prepared to understand the side effectsr changes to behavior that can occur afterBS. This is an important observation be-
ause the number of patients excluded from
BS on the basis of neuropsychiatric fac- “
, DECEMBER 2011 ww
ors is not insignificant. The authors of onetudy reported that 29% of a potential 98atients for DBS were deemed to be unsuit-ble candidates, with the most commoneason of exclusion being that patients ex-ibited cognitive or psychiatric disorders
the reason for almost 50% of those ex-luded) (11).
The challenge expressed by providers inur study concerned the exclusion of someatients who resided within a grey zone ofognitive or psychiatric function, even thoughhe providers were somewhat uncertain abouthether outcome would be detrimentally af-
ected in these patients. However, there aredditional reasons to exclude patients withognitive or psychiatric symptoms, includinghe need for patients to actively participatend cooperate during surgery and to capablyollow up during programming visits (11, 15).ltimately, the team makes a decision on theasis of the neuropsychological or psychiatricssessment about the patient’s suitability forBS. However, there is a need to better under-
tand the process by which this decision isade by different teams, how factors areeighted, and how experience comes intolay in making these decisions. Our dataemonstrate the immediate importance ofot only developing clearer guidance on ex-lusion criteria for DBS surgery but also ofommunicating and sharing this guidanceetween practitioners nationally and interna-
ionally.
nconsistencies in Access to DBSurgerywo of the most prominent threads that weoted were the inconsistencies that exist be-
ween provinces in resource allocation forBS programs and the regional variations
n access to DBS. To our knowledge, this ishe first formal report of such a difficultituation in the practice of DBS. The Canadaealth Act legislates public, universal cov-
rage for all Canadians of medically neces-ary services (5). However, within the Cana-ian health care context, each province or
erritory is responsible for the organizationnd delivery of services provided to its resi-ents. Therefore, variations in access andoverage may exist between provinces, asell as between regions and institutions.or instance, as Mortensen and Burkholder13) describe in their discussion of the caref Parkinson disease patients in Canada,
access to social workers, physiotherapists,
w.WORLDNEUROSURGERY.org 543
ssdsddsrsabttspebasapaiiff
actasmepitasatomgcfab
EfCOla
hscorotud
appncimptwnplcatopwtwilmn(
piowtceb(apse
oDhmI
PEER-REVIEW REPORTS
EMILY BELL ET AL. DEEP-BRAIN STIMULATION AND ETHICS
occupational therapists, speech therapistsand counselors are dependent on the facilityand often on the hospital it is associatedwith.” In another example, a 2005 report bythe Institute for Clinical Evaluative Sciencesexamined the Health Human Resources forNeurosurgical Services in the province ofOntario describes that one of the visiblesymptoms of stress in Ontario’s deliverysystem for neurosurgical services includesunequal access to appropriate technologyand care across the province (25).
Our observation of inconsistencies be-tween provinces in resource allocation forDBS corresponds with findings about ac-cess to other surgical devices. For example,the Canadian Cardiovascular Society and atask force of Canada’s medical devices com-panies (MEDEC Canadian Heart RhythmTask Force) have explored a similar prob-lem in the use of the implantable cardio-verter defibrillators (ICDs). These groupshave acknowledged that substantial provin-cial differences exist in the use of ICDsacross Canada, where some provinces (i.e.,British Columbia, Saskatchewan, Mani-toba, Prince Edward Island) fell well belowthe national average of implantation ofICDs in Canada in 2003/2004 (12). The con-cerns related to regional disparities werefurther brought to light by the CanadianCardiovascular Society which, in 2005, sug-gested that there were no national stan-dards for access to ICDs (24).
DBS is different than ICDs but there areaspects of ICDs that make them particularlycompelling to understand access and re-source issues in DBS. First, ICDs are high-tech implantable devices and are thereforesubject to similar regulatory frameworks asDBS. Second, ICDs, like DBS devices, are im-planted in highly specialized and localizedcenters. These factors, Simpson et al. (24)suggest, are key reasons why unequal accessexists for the ICD across and within Canadianprovinces. In certain cases, patients may livein a province without its own implanting cen-ter or may need to access care in another prov-ince. In addition, what has been suggested tooccur with ICDs, and was also reported byproviders in our study about DBS, is that theremay be a “culture of under-referral” in theseprograms, where physicians are hesitant torefer patients to programs that they sense areunavailable or when they think that wait lists
are too long (24). t
544 www.SCIENCEDIRECT.com
In their comprehensive analysis of re-ource allocation and access in ICD, Simp-on et al. (24) also explain that significantifferences between provinces exist in re-ource allocation for the device and proce-ure, something that parallels our dataemonstrating differing contexts of re-ource allocation for DBS across sites. Theegional disparity is created when some in-titutions are held to fixed budgets, othersre not, and when some are budgeted on theasis of estimated demand (24). However,
here are important ramifications of theype of funding structure used. For in-tance, fixed-budget programs often fallrey to ramping down of procedures at thend of the fiscal year, when waiting for newudgets to kick into place (24). Such a situ-tion was reported in one of the sites of ourtudy. When we use the example of ICDsnd the data we have collected on providererspectives towards access and resourcellocation in DBS, it seems that inequalitiesn regional and provincial access are signif-cant issues that present important barriersor patients and providers and compromiseair and equal access to DBS surgery.
Consequently, advocacy by professionalssociations to develop national standards ofare, the adoption of and application of na-ional standards by accreditation programs,nd personnel recruitments made by univer-ity hospitals in key research or clinical areasay be concrete ways to address regional in-
qualities within the current Canadian androvincial health care systems. Although the
ssue of access is highlighted in our study inhe Canadian context, general challenges inllocating limited resources within con-trained health care systems are also widelycknowledged internationally and the solu-ions that we propose for DBS (i.e., the devel-pment of national standards of care to pro-ote access) are not necessarily bound to any
eographic context. In addition, the Canadianontext also provides an interesting settingor observing some effects of shared federalnd territorial authority on healthcare distri-ution and access.
thical and Professional Responsibilitiesor Device Management and Long-Termareur study indicates the existence of chal-
enges related to feelings of uncertainty ornxiety held by some patients regarding
heir device. Some providers reported they w
WORLD NEUROSURGE
old a central responsibility to counsel andupport outpatients. Patients may face un-ertainty and anxiety about device failuresr about controlling their device after theyeturn home. Interactions with patients areften increased up until the point that a pa-
ient actually experiences a device failure ornexpected event, preparing him or her toeal with future occurrences.
Similarly, in a study in which they ex-mined emergency department visits byatients with DBS, Resnick et al. (19) re-orted that there is potentially a greaterumber of emergency department en-ounters in the first few months after DBSmplantation and that these encounters
ay decrease with time. The need for sup-ort for patients returning home with
heir devices has been recognized else-here in the literature, but there are notecessarily established standards or bestractices across DBS programs. Nonethe-
ess, the ease with which patients can ac-ess care and support from the team playsrole in how well their care is managed in
he long term. For instance, the authors ofne study identified the lack of access,articularly to programming, as a reasonhy some DBS failures occur, at the same
ime acknowledging that some patientsho may face more long-term challenges
n accessing support (i.e., because theyive far away from experienced centers)
ay want to consider therapeutic alter-atives to DBS, such as ablative therapy
14).Providers in our study identified not only
atients as needing support from the treat-ng team but also health care workers inther specialties who come into contactith a patient with DBS in the clinical con-
ext. The need for a better understanding ofare for DBS patients, particularly in themergency department, has recently beenrought to broader attention. Resnick et al.19) suggest that educational programs orlgorithms should be developed and incor-orated to help familiarize emergency phy-icians in the care of DBS patients in themergency department.
Acknowledging the importance of post-perative and long-term management inBS, two models for care for these patientsave been presented in the literature. Aodel developed by Antonini et al. (2) in
taly addresses the need for integrated care
hen a patient with DBS moves from the
RY, DOI:10.1016/j.wneu.2011.05.033
lwmocmit
ttbgttapatsgaw
C
OlcrTomDwsmtrttrcodptt
PEER-REVIEW REPORTS
EMILY BELL ET AL. DEEP-BRAIN STIMULATION AND ETHICS
hospital back to home and identifies thatlong-term maintenance of DBS is impor-tant because devices often require specialtraining and monitoring. However, it lacksany specific suggested actions to be taken toimprove care. Cohen et al. (6) have devel-oped a model of inpatient care, in the Amer-ican context, following DBS which is specif-ically designed to aid in programming ofthe device in the hopes of speeding up thetime that it takes and reducing the burdenfor patients who live far away from the im-planting site. Although this model of care isnot designed to help manage long-termcare at home directly, there are portions ofthe suggested model that would no doubtcontribute to a patient’s ability to managethe device at home, or his or her under-standing of responsibilities related to thecare of the device.
For instance, during this period of inpa-tient care, patients would be monitored by amultidisciplinary team for cognitive func-tion and mood changes, could receive coun-
Table 5. Suggested Actions for the LongPeer-Review Literature
Initial actions: Actions to be conducted immediate
Implement standard general education for patieadjusting their device (if they are permitted) and
Advise patients with regard to emergency conta
Identify who in the treating team patients first
Designate internal procedures or guidelines forsee, and in what time frame).
Make available psychological counseling or socipsychiatric side effects (which may be modulatechallenges that may be faced in adaptation at h
Designate additional resources for patients whodeficits).
Continuous actions: Actions to be carried out throu
Accommodate patients who are uncertain or thi
Integrate the family as much as possible in help
Coordinate and educate home care or communit
Develop telehealth alternatives for patients in r
Create protocols and training for emergency roo
Future actions: Actions to be considered in the fut
Undertake discussions about advance planning flong term and if so who and under what condit
Consider the use of advance directives for futurcapabilities) (7).
DBS, deep brain stimulation.
seling for psychosocial adaptation chal- (
WORLD NEUROSURGERY 76 [6]: 537-547
enges they may face returning home, andould even be counseled by a nutritionist toanage weight gain after DBS (6). The type
f close medical and comprehensive specialare that patients would receive in thisodel highlights just how many factors are
nvolved in the postoperative care of pa-ients with DBS.
We suggest that such a model would con-ribute to patient confidence over the longerm, even if that occurs unintentionally,ut that more deliberate educational pro-rams for patients could even be built into
his inpatient service to counsel about long-erm care, the challenges patients may face,nd how and when they should access sup-ort from the treating team. Along with theforementioned available models for pa-ient postoperative care, our data suggestome additional actions to consider inte-rating into the follow-up long-term carend postoperative monitoring of patientsith DBS based on international literature
Care and Postoperative Monitoring of Pa
r (or even put in place before) DBS implantation
d families about device care, travelling with their deing their device controllers.
rmation.
to in between visits if concerns arise.
patients contact the team with concerns (e.g., who
vices (social worker) for patients and families earlyarameter changes). Patients may also benefit froms roles of the family may change following the inte
redisposed to poorer outcomes or adverse side effe
the entire time a patient has DBS device
y have device failures quickly.
ith care to remove some of the burden and potentia
organizations in assisting in the long term manage
areas to gain access to providers within the treatin
sicians, especially in larger centers with active DBS
re of patients over the long term with DBS
ice management and care over the long term (e.g.,
tment decisions (i.e., maintaining or ceasing stimula
Table 5). a
, DECEMBER 2011 ww
ONCLUSIONS
ur study has helped bridge the theoreticaliterature with respect to ethical and socialhallenges in DBS with the real-world expe-iences of health care providers in the field.his is an important step to develop collab-rations and appropriate evidence-basededical ethics guidance in the practice ofBS. Key ethics challenges were associatedith the process of patient selection, re-
ource allocation, and long-term manage-ent. Providers proposed that solutions to
ackle ethical and social challenges in DBSeside in the establishment and use of mul-idisciplinary teams and limitation of DBSo expert centers. These approaches ineturn highlight the need for further spe-ialty training outside the current pocketsf established expertise as well as an evi-enced-based evaluation of measures inlace. Research to identify patient perspec-
ives on long-term management would helpo clarify whether patients themselves, first,
s on the Basis of Study Data and
monitoring the function of their device, correctly
ll them back, who they will be referred onto
er the procedure to monitor behavioral orto psychological counseling about psychosocial
on (6).
., patients with psychiatric history, or cognitive
ety from patients.
of patients with DBS (2).
when concerns arise.
ams (19).
sponsibilities shift to other individuals over the
patients who demonstrate declining cognitive
-Term tient
ly afte
nts an vice,insur
ct info
report
when will ca
al ser on aftd by p accessome a rventi
are p cts (i.e
ghout
nk the
ing w l anxi
y care ment
emote g team
m phy progr
ure ca
or dev will reions?).
e trea tion in
re uncertain or anxious with regards to de-
w.WORLDNEUROSURGERY.org 545
1
1
1
1
1
1
1
1
1
1
2
2
each i
PEER-REVIEW REPORTS
EMILY BELL ET AL. DEEP-BRAIN STIMULATION AND ETHICS
vice management, and second, if they areadequately informed or prepared for the is-sues they encounter, and, third, if they ac-cess support over the long term. Our exam-ination of the Canadian context brings tothe forefront the need to better understandregional variability in resource allocationand the long-term management strategiesput in place by different neurosurgical cen-ters. In addition, different problems that wehave observed in the Canadian context (pa-tient selection, informed consent, and ac-cess to specialized neurosurgery) are alsoechoed internationally. The solutions pro-posed and discussed are, we hope, valuableto the international community as a wholeworking in DBS.
ACKNOWLEDGMENTS
Thanks to William Affleck, Lila Karpowicz,and Daniele Pistelli for assistance with tran-scription of interviews for this study.
REFERENCES
1. Agid Y, Schupbach M, Gargiulo M, Mallet L, HouetoJL, Behar C, Maltete D, Mesnage V, Welter ML: Neu-rosurgery in Parkinson’s disease: the doctor ishappy, the patient less so? J Neural Transm Suppl70:409-414, 2006.
2. Antonini A, Miro L, Castiglioni C, Pezzoli G: Therationale for improved integration between homecare and neurology hospital services in patients with
Appendix 1. Health Care Providers’ Rank
Ethical and Social Challenges in Neurostimul
Patient screening: Establishing and applying criteri
Public understanding: Public understanding of DBS
Economic issues: Cost-benefit analysis and resourc
Mood and cognitive enhancement: The use of DBS
Informed consent: Establishing and carrying out inf
Safety and patient security: The assessment of ris
Management of surgical procedure: Preoperative, o
Privacy and stigma: Respect of privacy and mitigat
Commercial and legal issues: Patenting ownership
These issues were chosen on the basis of a review of th*Providers were asked to assess the challenges in the tabl
on a 5-point scale, where 1 � not a challenge and 5dividing by the number of practitioners who answered
3. Bell E, Mathieu G, Racine E: Preparing the ethicalfuture of deep brain stimulation. Surg Neurol 72:577-586; discussion 586, 2009.
4. Bell E, Maxwell B, McAndrews MP, Sadikot A,Racine E: Hope and expectation in deep brain stim-ulation: healthcare provider perspectives and ap-proaches. J Clin Ethics 21: 112-124, 2010.
5. Canada, Department of Justice: Canada HealthAct. Available at: http://laws.justice.gc.ca/en/c-6/index.html. Accessed on March 9, 2011,
9. Hsieh HF, Shannon SE: Three approaches to quali-tative content analysis. Qualitative Health Research15:1277-1288, 2005.
0. Lang AE, Houeto JL, Krack P, Kubu C, Lyons KE,Moro E, Ondo W, Pahwa R, Poewe W, Troster AI,Uitti R, Voon V: Deep brain stimulation: preopera-tive issues. Mov Disord 21 Suppl 14:S171-196, 2006.
1. Lopiano L, Rizzone M, Bergamasco B, Tavella A,Torre E, Perozzo P, Lanotte M: Deep brain stimula-tion of the subthalamic nucleus in PD: an analysis ofthe exclusion causes. J Neurol Sci 195:167-170, 2002.
2. MEDEC Canadian Heart Rhythm Task Force: Pro-vincial variations in access to implantable cardio-verter defibrillators (ICDs). Toronto, ON. Available
f Ethical and Social Issues in Neurostimul
(Identified in the Literature)
creen patients
and benefits
cation
prove mood and cognition in the healthy
consent
ensuring patient safety
ve, and postoperative management and care
stigma
facturing of devices, and relationships with industry
ture.tions were listed as they appear in the table) in their field to
rucial challenge. Ranking of the challenges was obtained bytem (some providers did not assess each item).
at: http://www.medec.org/webfm_send/794. Ac-cessed May 24, 2011.
WORLD NEUROSURGE
3. Mortensen M, Burkholder J: Parkinson’s care inCanada. EPNN J Summer: 8-9, 2006.
5. Okun MS, Fernandez HH, Rodriguez RL, Foote KD:Identifying candidates for deep brain stimulation inParkinson’s disease: the role of the primary carephysician. Geriatrics 62:18-24, 2007.
6. Pillon B: Neuropsychological assessment for man-agement of patients with deep brain stimulation.Mov Disord 17 Suppl 3:S116-122, 2002.
7. Rabins P, Appleby BS, Brandt J, DeLong MR, DunnLB, Gabriels L, Greenberg BD, Haber SN, Holt-zheimer PE, 3rd, Mari Z, Mayberg HS, McCann E,Mink SP, Rasmussen S, Schlaepfer TE, Vawter DE,Vitek JL, Walkup J, Mathews DJ: Scientific and ethi-cal issues related to deep brain stimulation for dis-orders of mood, behavior, and thought. Arch GenPsychiatry 66:931-937, 2009.
8. Racine E, Waldman S, Palmour N, Risse D, Illes J:“Currents of hope”: neurostimulation techniques inU.S. and U.K. print media. Camb Q Healthc Ethics16:312-316, 2007.
9. Resnick AS, Foote KD, Rodriguez RL, Malaty IA,Moll JL, Carden DL, Krock NE, Medley MM, BurdickA, Haq IU, Okun MS: The number and nature ofemergency department encounters in patients withdeep brain stimulators. J Neurol 257:122-131, 2010.
0. Schechtman M: Philosophical reflections on narra-tive and deep brain stimulation. J Clin Ethics 21:133-9, 2010.
1. Schupbach WM, Agid Y: Psychosocial adjustment
Ranking*
3.6
3.5
3.4
3.4
3.1
2.9
2.8
2.4
2.1
they relate to current and future uses of neurostimulationthe points given for each item by each practitioner and
ing o ation
ation
a to s
risks
e allo
to im
ormed
k and
perati
ion of
, manu
e literae (ques day as� a c adding
after deep brain stimulation in Parkinson’s disease.Nat Clin Pract Neurol 4:58-59, 2008.
24. Simpson CS, O’Neill BJ, Sholdice MM, Dorian P, KerrCR, Ross DB, Ross H, Brophy JM: Canadian Cardiovas-cular Society commentary on implantable cardioverter
WORLD NEUROSURGERY 76 [6]: 537-547
5. Tepper J, Jaigobin C, Wang C: Health human re-sources for neurosurgical services in Ontario. ICESinvestigative report. Institute for Evaluative Sci-ences, Toronto, ON, 2005.
6. U.S. Department of Health E, and Welfare: Protec-tion of human subjects. Use of psychosurgery inpractice and research: report and recommendationsof National Commission for the Protection of Hu-man Subjects. Fed Regist 42: 26318-26332, 1977.
7. Woodrow SI, O’Kelly C, Hamstra SJ, Wallace MC:Unemployment in an underserviced specialty? Theneed for co-ordinated workforce planning in Cana-
, DECEMBER 2011 ww
onflict of interest: This study was funded by the Canadiannstitutes of Health Research, NNF 80045; States of Mind:merging Issues in Neuroethics (ER); New Investigatorward (ER); and Social Sciences and Humanities Researchouncil of Canada (EB).
eceived 13 October 2010; accepted 13 May 2011
itation: World Neurosurg. (2011) 76, 6:537-547.OI: 10.1016/j.wneu.2011.05.033
