Palliative care to neurological and neurosurgical patients presents many challenges. The needs of patients and their families varies according to the stages of neurological and neurosurgical illness. In acute phase, there is need for specialist care. Whereas in chronic survivors, it is more focused on rehabilitation, with supportive care structured around the needs and problems of the patients and family members. Patients with neurological and neurosurgical diseases are different from those with cancer and hence the need for palliative care. Palliative care aims to improve the outcome of patients through prevention and relieving of suffering by a holistic approach; considering the physical, psychosocial, and spiritual modes of treatment.
KeywordsCognition, End-of-life issues, Neurological problems, Pain, Palliative care, Rehabilitation
History of Palliative Care 954
Need for Palliative Care in Neurological and Neurosurgical Patient 955
Indian Perspective 956
Stepwise Management Plan of Metastatic Spinal Cord Compression 957
Clinical Approach of Palliative Care in Neurosciences 957
End-of-Life Care 958
Do-Not-Resuscitate Orders 959
Withdrawal of Life Support Measures 959
Family Issues 960
Care of the Dying Patient 960
Physical Care 960
Psychological Care 960
Social Care 960
Spiritual Care 961
Future Need 961
Palliative care to neurological and neurosurgical patients presents many challenges. The needs of patients and their families varies according to the stages of neurological and neurosurgical illness. In the acute phase, there is need for specialist care, whereas in chronic survivors, it is more to be focused on rehabilitation, with supportive care structured around the needs and problems of the patients and family members. Neurological and neurosurgical disease are different from cancer and hence the need for palliative care. These differences are in the age of presentation, the rapidity of symptoms development, type of symptoms, variability of disease progression, and associated cognitive change. Such patients present at elderly age; have gradual disease progression; are functionally more impaired at terminal stages with disability and inability to communicate; present with less of symptoms like pain, nausea, and vomiting; but have multiple physical, psychological; and spiritual needs.
As per the World Health Organization (WHO) definition of palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” There is increasing acceptance of the principles of palliative and supportive care for patients who do not have cancer to provide supportive multidisciplinary symptom management. Since the short- and long-term prognoses and survival vary in different groups of neurological and neurosurgical patients, the goal of palliative care in such group of patients is to prevent and relieve suffering of the patient, to provide appropriate therapies and approaches to enhance the quality of life of the patient and the family, to optimize daily functional capacity of the patient, as well as to create a comfortable space to discuss advance directives and other end-of-life treatment decisions.
Hence palliative care aims to improve the outcome of patients through preventing and relieving of suffering by a holistic approach, considering the physical, psychosocial, and spiritual modes of treatment.
History of Palliative Care
History of palliative care is as old as that of health care itself. Hippocrates reiterated that physicians should “refuse to treat those who are overmastered by their diseases, realizing that in such cases medicine is powerless.” William Munk, a physician and historian, wrote that “physicians, the clergy, and intelligent nurses” should use to alleviate the “mortal agony” of death.
The word palliative comes from the Latin word pallium , “to cloak,” meaning alleviation of the patient’s symptoms. The term “palliative care” was first used by Balfour Mount from the Royal Victoria Hospital in Montreal. Initially, palliative care was used as the sequel to curative therapies and it begins only after curative therapy becomes ineffective. In 1990, the WHO redefined the concept of palliative care and integrated it in the treatment plan, irrespective of the disease outcome, specifying that patients and their families should receive palliative care early in the course of a disease. A new concept of palliative care came up in 2004 that defines “palliative care as the person-centred attention to physical symptoms and to psychological, social, and existential distress and cultural needs of patients with limited prognosis in order to optimize the quality of life of patients and their families or friends.”
Palliative care services are broadly divided into basic and specialized palliative care. Basic palliative care should be provided by all primary and secondary providers, while specialized palliative care refers to care provided by palliative care specialists with appropriate education and training.
The primary aim of palliative care is
Reduction of suffering of the patient by management of pain and other symptoms
Care of family and dependents
As per the WHO the definition of pain is “an unpleasant sensory or emotional experience associated with actual or potential tissue damage, or described in terms of such damage.” Hence the management of pain in the palliative setting is one of the primary goals to be achieved at the earliest to get the confidence of patient and the family.
WHO recommends a safe, simple, and effective three-step approach of management of pain based on severity as mild, mild to moderate, and moderate to severe. This three-step ladder provides effective pain relief in up to 90% of patients with cancer.
Need for Palliative Care in Neurological and Neurosurgical Patient
Palliative care services are required in progressive neurological diseases with fluctuating natural course. Diseases like motor neuron disease (MND), multiple sclerosis (MS), Parkinson disease (PD), Alzheimer’s disease, and other associated disorders present at different stages with gradual to sudden deterioration in physical and cognitive functions. Some of the common signs of neurological deterioration are depression, cognitive impairment, and neuropsychiatric decline.
|Prevalence||Estimated Numbers a||Annual Death b|
|Motor neuron disease||6/100,000||5000||1500|
|Multiple system atrophy||5/100,000||4500||200|
|Progressive Supranuclear palsy||6/100,000||5000||310|
|Neurological Disease||Specific Triggers|
|Parkinson diseases||Rigidity, pain, neuropsychiatric decline|
|Motor neuron diseases||Dyspnea, dysphasia|
|Alzheimer disease||Severe depression, recurrent infection, cognitive decline|
|Multiple sclerosis||Depression, cognitive changes, spasms, dysphasia|
Stroke and stroke-related deaths account for 7% of all deaths in the United States. The most common is ischemic stroke (80%) followed by intracerebral hemorrhage (ICH) (10–15%) and subarachnoid hemorrhage or subdural hematoma (5–10%). Of these patients with stroke, up to 30% are permanently disabled and another 20% require institutional care at 3 months due to variety of morbidity. In spite of the fact that stroke is the third leading cause of death and major cause of adult disability, the role of palliative care needs of such patients and their families is still to be defined. The natural course of stroke and stroke-related diseases can broadly be divided into acute and chronic stages. About 50% of all stroke-related deaths occur in acute stage in hospital setting, and rest of the patients will survive with different grades of disability. In general, patients with acute stroke were functionally more impaired but have less physical and psychological burden than patients with cancer. Palliative care need can also depend on the type of stroke. As the majority of stroke, up to 80%, were caused by ischemia and have better prognosis then hemorrhagic stroke (mortality 15% vs. 40%), patients with hemorrhagic stroke are more likely to have a need for acute palliative care and end-of-life needs then those with ischemic stroke. From previous studies, it has been found that majority of palliative care services were taken for noncommunicative and dysphagic patients apart from referrals for symptom management, for complex decision making, and for nutrition and hydration. Due to limited prospective information on palliative care need of patients with stroke, these services are very limited and a lot has to be done for it.
According to WHO, traumatic brain injury (TBI), with an estimated 10 million people affected annually, will become the major cause of death and disability by the year 2020. TBI is a public and medical health problem throughout the world but has become an epidemic in low- and middle-income countries (LMICs). LMICs have higher risk factors for TBI and have inadequately prepared health systems. It is also referred to as “silent epidemic” because of the impairment in memory and cognition that is often not visible. Available data indicate that nearly 60% of TBIs are due to road traffic accidents worldwide and rest 40% are due to due to falls, violence, and injury at workplace and sports-related injuries. Apart from physical and medical implications, TBI has social and financial implications too.
The annual incidence of TBIs in India is estimated to be 160 per 100,000 with a mortality rate of 20 per 100,000. . TBI is the leading cause of death in India in males younger than 45 years.
On an estimate, nearly 1 million persons would require rehabilitation services at any given point of time for TBI consequences in India. However, despite alarmingly increasing deaths and disabilities, the palliative and rehabilitative services are still meager and limited in India.
Of special concern is the need for care of patients with childhood TBI. Up to 75% of childhood injuries have associated TBI and neurological damage. Among all pediatric diseases, TBI has the highest morbidity and disability. So, the need of the hour is to develop in hospital, rehabilitative and palliative care services for such patients.
Management of brain-injured patient may go through different phases. Initial focus is on managing and stabilizing the medical condition. Many patients will die during the acute phase, either due to the brain injury or associated complications. Over the next few weeks, patients either improve partially or completely or may remain in a vegetative state. The role of palliative care team is very crucial in postcoma-unresponsive (PCU) and minimally responsive state (MRS) group of patients. Such a diagnosis should only be made after 4 weeks of emergence from coma. Once a diagnosis of PCU or MRS has been made, the palliative care needs of the patient should be discussed with the family. A decision must be taken about whether intensive treatments will be continued or deescalated.
Metastatic Spinal Cord Compression
Spinal cord compression is a complication of metastatic cancer and was first described by Spiller as progressive paraplegia in patients with cancer. Spinal column metastasis occurs in 3–5% of all patients with cancer, but its incidence is as high as 19% in patients with breast, prostate, and lung cancer. More than 65% of cases of metastatic spinal cord compression (MSCC) occur in the thoracic spine. MSCC usually occurs with vertebral body collapse or direct tumor growth causing compression of the spinal cord and is proportional to the duration of disease.
Spinal cord damage due to metastatic diseases is multifactorial. Due to direct compression of spinal cord, there is edema, venous congestion, and demyelination. With prolonged compression and ischemia, infarction of the spinal cord occurs in due course of time. Recovery of neurological functions depends on the rapidity with which symptoms appeared. Sudden development of neurological symptoms in MSCC is a predictor of poor outcome, whereas slow-onset compression with gradual neurological deficit usually predicts a better outcome because it allows time for cord adaptation analogous to preconditioning to ischemia.
Back pain is the most frequently occurring symptom, accounting for 95% of all symptoms. It may localized or radiating to specific nerve root levels. It has been found that 37% of patients with MSCC had neurogenic radicular pain, 15% had localized pain, and the rest had a combination of both. Weakness of limbs is the second most common symptom of cord compression, apart from back pain and weakness, sensory symptoms such as paresthesia, and numbness of toes and fingers with decreased sensation. Autonomic dysfunction is a late consequence of MSCC. It may present most commonly as bladder or bowel dysfunction with retention or incontinence or constipation.
So, early diagnosis and treatment is essential to prevent neurological damage. It is a multidisciplinary approach involving neurosurgeons, radiation oncologists, physiotherapist, and experts from pain and palliative care. Apart from clinical management, inclusion of palliative and rehabilitative services may have a greater impact on overall outcome because there is a significant association between the ability to walk at the time of diagnosis and the ability to walk following treatment. Also, the ability to walk at the time of diagnosis is a statistically significant predictor of outcome in terms of survival. Once paraplegia develops it is usually irreversible and can affect the quality of life of both the patient and their carers. Patients with MSCC often experience significant functional losses coupled with the emotional, psychological, and social distress associated with advancing disease. Hence, palliative, rehabilitative, and supportive care is essential to improve the outcomes and to decrease the financial implication.