Ethical Issues

Palliative Care in
Address correspondence to
Professor Ludo J.
Vanopdenbosch, Department
of Neurology, AZ Sint Jan,

Multiple Sclerosis Ruddershove 10, Brugge

8000, Belgium, ludo.
vanopdenbosch@azsintjan.be.
Ludo J. Vanopdenbosch, MD, FAAN; Relationship Disclosure:
Dr Vanopdenbosch serves on
David J. Oliver, BSc, MBBS, FRCP, FRCGP; the advisory boards of and
Joseph S. Kass, MD, JD, FAAN has received personal
compensation for speaking
engagements from Biogen;
Merck & Co, Inc; Novartis AG;
ABSTRACT and Sanofi Genzyme.
Dr Oliver serves on the
Collaboration between the neurologist and palliative care team in the care of patients editorial board of the
with severe demyelinating disease can result in improved patient care, and discussion European Journal of
of the complex ethical issues that arise when a patient expresses a wish to die may be Palliative Care, on the board
of directors of the European
rewarding for both patients and caregivers. Association of Palliative Care,
and as chair of the Palliative
Continuum (Minneap Minn) 2016;22(3):943946. Care Scientific Panel of the
European Academy of
Neurology. Dr Oliver has
received paid travel
accommodations/meeting
expenses from the European
Association of Palliative Care
Case and for speaking engagements
at conferences, including the
A 42-year-old woman was diagnosed with relapsing multiple sclerosis Association of Palliative
at the age of 19. She experienced many relapses and was wheelchair Medicine of Great Britain and
dependent with an Expanded Disability Status Scale (EDSS) score of 6.5 by Ireland, European Academy of
Neurology, Finnish Palliative
the age of 25. In the following years, she was diagnosed with secondary Care Society, Italian Society of
progressive multiple sclerosis and developed progressively more spasticity, Neurology, Motor Neurone
swallowing difficulties, and trigeminal neuralgia. She was never treated Disease Association of
Australia, and World Congress
with disease-modifying therapy. She never married and had no children; of Neurology. Dr Oliver
she was looked after by her mother. Following her mothers death, she receives royalties from Oxford
came to the emergency department and made a request to die. She was University Press, Sheldon
Press, and Springer and research
admitted to the inpatient neurology unit, and a palliative care consult support from the Motor
was requested. Neurone Disease Association
The palliative care team found that she was in significant pain, could of England and Wales. Dr Kass
has received personal
not eat because of spasticity and trigeminal neuralgia, had urinary compensation for expert
incontinence, and had developed a decubitus ulcer from sitting in her testimony in legal cases
wheelchair. She explained that over the last few years, she had not wanted involving personal injury,
defamation, and malpractice.
to continue living and contemplated suicide but had promised her mother
Unlabeled Use of
that she would be strong for her. Following the death of her mother, she Products/Investigational
became severely depressed and expressed that she could see no meaning Use Disclosure:
in continuing to live. Drs Vanopdenbosch, Oliver,
and Kass report no disclosures.
* 2016 American Academy of
Neurology.

DISCUSSION
Patients requests to end their lives are dealt with in various ways in different
US states and Western countries. Although some jurisdictions have the legal
infrastructure to allow patients to die with the help of their treating physician,
most do not allow physician-assisted suicide. Regardless of the rules of the juris-
diction, the ethical physician must dig beyond the surface request to determine the
fundamental drivers of the patients desire to die. This patient presented to a new
neurology care team in crisis, including poor psychosocial support and essentially

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 Palliative Care

no symptom control. The physicians fiduciary obligation to the patient; the virtues
of compassion, integrity, and altruism; and the principles of beneficence and
nonmaleficence shape the physicians ethical course of action to put the request
to die on hold and engage in aggressive palliative care to improve the patients
quality of life.

Case Continued
The patient was started on an antidepressant and underwent an
intrathecal baclofen trial that relieved much of the spasticity and the pain.
An intrathecal baclofen pump was then surgically placed. The trigeminal
neuralgia improved, probably as a result of the combination of the
antidepressant and baclofen. After much discussion between the patient
and members of the multidisciplinary medical team (including a neurologist,
a psychiatrist, a physiatrist, and palliative care team members), the patient
rescinded her request to die and agreed to further therapy. The team, in
conjunction with the patient, made the decision to insert a gastrostomy
tube because the patient was still experiencing significant dysphagia,
which limited her nutritional support and put her at risk of aspiration. All
of these interventions gave the patient time to consider further long-term
decisions, after being appropriately treated for depression and pain. She was
discharged to a long-term care facility specializing in the care of patients
severely affected by multiple sclerosis.

DISCUSSION
The management of multiple sclerosis symptoms, communicating bad news, as-
sisting the patient with the creation of advance directives, and finding social
solutions are all part of everyday neurologic practice. Palliative care specialists may
complement the care the neurologist provides to patients with complex disabling
neurologic disease. Although many neurologists have experience in providing
symptom control and pain relief to their patients, they and their patients may still
benefit from working with a palliative care team to improve patients quality of life.
Additionally, palliative care specialists benefit from the neurologists guidance in
understanding the effects of neurologic disease and in advising about certain
potentially helpful procedures, such as intrathecal baclofen pumps for spasticity.
Thus, a collaborative approach between a neurologist and palliative care team can
produce benefit to the patient, augmenting a neurologists ability to provide care in
a manner consistent with his or her fiduciary duty to the patient.1
This case contains several features best dealt with in consultation with a
palliative care team. By consulting the palliative care team, the neurologist acts
altruistically and demonstrates compassion and integrity. The neurologist also acts
with the patients best interests in mind (fiduciary duty) and works to maximize
benefit to the patient (principle of beneficence) while reducing harm (principle of
nonmaleficence). Additionally, in working with appropriate specialists to relieve
the patients symptoms, the neurologist also promotes the patients right to self-
determination (principle of autonomy). This patients physical, psychological, and
spiritual distress can be seen as driving her to suicidal thoughts. By removing these
extrinsic forces through effective palliative care along with the guidance of her

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multidisciplinary medical team, she was able to appraise her situation and decide
on the most appropriate course of action.
The patient and members of the multidisciplinary medical team can employ a
joint decision-making model to reach a plan of action. This model sees physicians
and patient as partners in decision making. In a paternalistic model, the physician
knows what is best and decides for the patient; this model is many decades out of
favor. In the diametrically opposed model of pure autonomy, the patient is given
information about the risks and benefits of various courses of action and is left
alone to choose the one he or she prefers. The shared decision-making model
recognizes that many patients would like their physicians guidance in evaluating
treatment choices in terms of the patients personal goals and values. Once most of
her symptoms were relieved, this patient was able to work with her team and
exercise her right of autonomy, unburdened by depression and pain, to decide on
an appropriate solution to her difficult predicament in the context of her personal
values and long-term goals.
Although early implementation of palliative care may be a new concept for
some specialties, neurologists, whether or not they call their care palliative,
engage in palliative care when managing patients with serious diseases that
often lack curative treatment. Neurology and palliative care share many issues in
common: often incurable diseases, a focus on patient dignity and empower-
ment, care for the caregivers, emergency situations with no clear resolution,
difficult decisions, and dying patients. The goals of palliative care include
prolongation of life, maintenance of function, and maximization of comfort
(Ethics Figure 1).2 Whether it is ordering an intrathecal baclofen pump for a
patient with multiple sclerosis with severe spasticity or recommending a
gastrostomy tube for a patient with amyotrophic lateral sclerosis with severe
dysphagia, neurologists are trained to anticipate the complications of incurable
disease and work to palliate symptoms to the extent possible. In fact, a trial of

ETHICS FIGURE 1 Goals of palliative care. Goals of palliative care

are being redefined based on the biological,
spiritual, psychological, and social incapacitation
of the patient (X axis) rather than time point or curable
versus uncurable phase.
Reprinted from van der Steen JT, et al, Palliat Med.2
pmj.sagepub.com/content/28/3/197.long. B The Author(s) 2013.

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 Palliative Care

specialist palliative care involvement with a range of advanced neurologic

diseases has shown an improvement in pain, breathlessness, sleep disturbance,
intestinal problems, and quality of life.3

Case Continued
Seven years later, the patient was admitted to the hospital again, but
this time with pneumonia and sepsis. She was unable to communicate and
had severe dementia. Based on her advance directive written during the
previous hospitalization described earlier in the case, no antibiotics were
started. Morphine was given for apparent pain, and low-dose midazolam
was administered for terminal restlessness. She died 2 days later.

CONCLUSION
The multidisciplinary team caring for this patient had optimized the patients
autonomy by asking her to create an advance directive while she still had the
cognitive ability to do so. This approach can be thought of as preventive ethics
and should be part of the ethical management of any patient with a degenerative
neurologic disease. Thus, this patients right to self-determination was respected,
and her physicians were able to treat her with the compassion and respect she
deserved by honoring her advance directive.

REFERENCES
1. Quill TE, Abernethy AP. Generalist plus specialist palliative careVcreating a more sustainable
model. N Engl J Med 2013;368(13):1173Y1175. doi:10.1056/NEJMp1215620.
2. van der Steen JT, Radbruch L, Hertogh CM, et al. White paper defining optimal palliative care in
older people with dementia: a Delphi study and recommendations from the European Association
for Palliative Care. Palliat Med 2014;28(3):197Y209. doi:10.1177/0269216313493685.
3. Veronese S, Gallo G, Valle A, et al. Specialist palliative care improves the quality of life in advanced
neurodegenerative disorders: NE-PAL, a pilot randomised controlled study (published online ahead
of print July 16, 2015). BMJ Support Palliat Care. doi:10.1136/bmjspcare-2014-000788.

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