Palliative care focuses on improving the quality of life of patients with serious
or advanced medical illnesses.[1] Neurological and neurosurgical conditions tend to have enormous symptom burden,
variable disease trajectory, and poor prognoses that affect patients as well as their
families and caregivers.[2]
[3] General as well as specialized palliative care is required in neurologically injured
patients, such as those with Parkinson disease (PD), dementia, amyotrophic lateral
sclerosis, brain tumors, stroke, and acute neurologic illnesses to address their complex
needs.[3]
[4]
[5] The comprehensive approach includes care of physical, psychological, social, and
spiritual aspects of patients to provide comfort and to improve their quality of life.
Palliative care also assesses and treats other sources of distress such as normal
reactions to living with a life-threatening, progressive, and/or disabling illness.
In neurological and neurosurgical patients, the concept of autonomy in clinical practice
can only be achieved by adopting the principles of palliative care. With declining
cognitive or physical function, the discussion about prognosis, goals of care, and
advance care planning will improve the patient outcome and caregiver satisfaction.
Neurological diseases are largely incurable due to multiple factors and considerably
reduce the quality of life due to associated pain, anxiety, depression and other symptoms
that are difficult to control. Hence, early integration of palliative care in neurological
patients will improve the overall well-being of patients and their family members.[6]
[7]
[8] Miyasaki et al showed that symptom burden on patients and caregivers in advanced
(PD) is similar to that in advanced malignancy.[9] Hence, there is growing need of integration of palliative care approach in neurology
practice.[1]
[10] The palliative approach in traditional neurology benefits patients in many ways.
As traditional approaches concentrate more on the preservation of function and prolongation
of life, palliative care emphasizes more on symptom management and relief from suffering.
It also prepares the patient and family members to accept death as natural outcome
rather than as a failure of medical treatment.[3]
[4] Neurologists have a primary responsibility to assess and treat nonmotor symptoms,
such as pain, depression, anxiety, fatigue, sleep, constipation, urinary urgency,
and sexual dysfunction. Studies in different type of neurological populations have
shown that nonmotor symptoms are the most debilitating for patients, and these symptoms
affect caregiver burden and overall quality of life more than motor symptoms.[11]
[12]
[13] Most common neurological and neurosurgical diseases that require palliative care
are chronic neurodegenerative disorders, motor neuron disease, ischemic or hemorrhagic
stroke, demyelinating diseases, movement disorders, and brain tumors.
This is high time to incorporate fundamental palliative care skills, including communicating
bad news, nonmotor symptom assessment and management, advance care planning, and caregiver
assessment in neurology practice and specialist palliative care referral for more
complex or advanced patients. The modes of specialist palliative care services can
be inpatient palliative care consultation, outpatient palliative care clinics, home
palliative care, or hospice. But traditional models of palliative care may not sufficiently
address the specific needs of patients and family members living with a neurological
diagnosis. Patients with a life-limiting neurological illness have a different disease
trajectory as compared to cancer patients. Apart from physical symptoms, other predominant
problems include cognitive impairment, behavioral issues, and communication difficulties.[14]
[15] The notable differences between neurology and other patients include symptom profiles,
psychosocial issues, caregiver needs, and effects on spiritual well-being. The patients
with motor neuron disease have more demoralization, hopelessness, and suicidal ideation
than patients with metastatic cancer.[16] Similarly, patients with brain tumors have distinct issues, including cognitive
problems, seizures, and communication difficulties, than patients living with other
types of cancers.[17]; Patients with Huntington disease have special social needs as a result of combined
behavioral, psychiatric, movement, and cognitive issues.[18] Palliative care needs of patients with malignant gliomas are also quite different
from others in the cancer patient population. This is because of different trajectory
of disease, short life expectancy, and the presence of specific symptoms related to
neurological deterioration. The specific issues include management of seizures, peritumoral
edema, venous thromboembolism, depression, and opportunistic infections. The other
problems include psychological issues, communication problems, need for rehabilitation,
and decision on end-of-life treatments and choices.[19]
[20]
[21]
[22]
Specialist palliative care referral may be warranted in end-of-life care, feeding
tube discussions or other complex interventions, spiritual issues arising from prolonged
illness, distressing psychological issues, and in intractable physical symptoms. Also,
frequent hospital admissions due to pneumonia, falls, and urinary tract infection,
ongoing weight loss, progressive dysphagia, restricted activities of daily living,
or a rapid decline in function may signify the need for referral to hospice.[4]
Neuropalliative care is developing as a subspecialty but there are several questions
that need to be answered including:
-
Development and validation of prognostic predictors.
-
Tools for identification of high-risk patients to be referred to specialist palliative
care services.
-
Developing evidences for better control of nonmotor symptoms.
-
Cost-effectiveness of palliative care interventions and the model for palliative care
delivery.
To conclude, though the patients with neurological disorders frequently have very
complex needs, these are still manageable using a palliative approach. Early communication
with patients and family members about various issues, such as disease trajectory,
common symptoms, treatment options, and prognosis, may be helpful in alleviating distress
experienced by them. This timely communication helps in building a strong clinician–patient
relationship that forms the basis of good care. Further, to ensure that the care provided
by clinician aligns with the patient preferences, shared decision making regarding
critical decisions throughout the continuum of disease is essential. However, more
research is needed to determine the ideal method of incorporating palliative care
into the management plans for patients with a variety of neurological conditions.
