We Need More Palliative Care Centres For Neurological Disorders

Submitted by PatientsEngage on 7 April 2020
A woman in bed being tended to by a person in green scrubs with a stethoscope

With growing occurrences of neurological disorders, an increased collaboration between neurology and palliative care or neuropalliative care services has become imperative, stresses Dr.Kaustubh Mahajan, neurologist at Hinduja Hospital, Khar. Also an extract from a paper presented by neurologist Dr Roopkumar Gursahani.

What is the role of palliative care in patients with neurological diseases?

There's a definite and very important role of palliative care in neurological diseases. There are so many patients with neurological conditions who have persistent disabilities that can't be treated to cure but can be managed by palliative care to keep patient and his family comfortable significantly.Our goal as a physician is not just to treat the disease but the patient as a whole and ensure he's comfortable as well.

Neurological diseases have been found to be the second most common condition, after oncological diseases, in patients seen by a palliative care. Why is it so?

There many cancers which can't be treated either because they're very aggressive and we don't have any treatment or because the cancer was identified late especially when it has already spread where treatment usually fails. Similarly, in neurology which involves brain and spinal cord, both being specialised organs, complete cure may not be possible in mostly degenerative and genetic conditions.

Do neurology patients such as those with Parkinson disease, dementia, multiple sclerosis, brain tumours, stroke, etc have unique palliative care needs?

Yes, different neurological conditions have different palliative needs. For instance, degenerative neuro conditions like Alzheimer's, Parkinson's keep progressing and caretaker burnout also needs to be addressed. Patients with Stroke, infact, may slowly get better. Medications for these conditions may have side effects which must be known and tolerated at times. Patients with Multiple Sclerosis may feel drained because of depression as well which needs to be addressed and treated.

Palliative care in chronic, progressive, and incurable neurological conditions is being recognized now, though not widely practiced. Is there is still a wide range of unmet palliative care needs for neurology in India?

Yes, there are many other unmet palliative care needs to be still addressed in our country. Like critical patients in ICU with multiple organ dysfunction, with irreversible brain injury - sometimes rather than radical aggressive medical interventions, palliative approach would be preferable and financially helpful. Also, how to communicate to relatives and patients about their conditions who have or existing notion that nothing can be done - right communication is first step in palliative care.

With growing occurrences of neurological disorders and symptoms, do you think an increased collaboration between neurology and palliative care or neuropalliative care services has become imperative?

Yes, it has become imperative to collaborate neuro and palliative care, because as life expectancy is increasing with better conditions, more and more neurological conditions which need palliation are seen.

How can palliative care be integrated into neurology practice?

Palliative care needs to be and can be integrated with neurological practice. Infact, in some conditions palliative care plays more important role than just medical therapy. It starts with awareness amongst physicians about there's more to patients condition than just diagnosis and cure. During medical training itself this has to be taught. Medical students learn from their teachers or senior doctors.

What are the complexities and challenges of neuropalliative care services?

There are many complexities and challenges in neuropalliative care. Awareness is very less about palliative care among physicians as well as patients.Also palliative is a slow process with no immediate results like in curative treatments so satisfaction is also slow and gradual but definite. Also, there are not many palliative care centres. There should be more of them.

How can the delivery of neuropalliative care to patients be improved?

Delivery of neuro palliative care can be increased if we have more palliative care centres and home based therapy is provided.

Should home-based specialist treatment for severely affected neurological patients be advocated and promoted?

Yes,home based specialist treatment for severely affected neurological patients should be advocated and promoted.

What is the difference between palliative and end-of-life care?

There's a very thin line between both of them. One can tell where palliative care extends to end of life care.They're overlapping.

Abstract

End-of-life care is an integral part of neurology practice, and neuropalliative medicine is an emerging neurology subspeciality. This begins with serious illness communication as a protocol-based process that depends on an evaluation of patient autonomy and accurate prognostication. Communication needs vary between chronic, life-limiting neurologic illnesses and acute brain injury. In an ideal situation, the patient's wishes are spelled out in advance care plans and living wills, and surrogates have only limited choices for implementation. Palliative care prepares for decline and death as an expected outcome and focuses on improving the quality of life for both the patients and their caregivers. In the Intensive Care Unit, this may require clarity on withholding and withdrawal of treatment. In all locations of care, the emphasis is on symptom control. Neurologists are the quintessential physicians, and our "dharma" is best served by empathetically bringing our technical knowledge and communication skills into easing this final transition for our patients and their families to the best of our ability.

(The above extract is taken from a paper on ‘Palliative care and the Indian Neurologist’by Dr Roopkumar Gursahani, Neurologist Consultant at Hinduja Hospital.

doi: 10.4103/0972-2327.192885 )

Community
Alzheimer's and Dementia
Neurological Conditions
Parkinsons Disease and Movement Disorder PDMDS
Condition
Dementia
Parkinson Disease
Changed
Sun, 04/12/2020 - 19:34

Stories

  • Dementia Tests and Diagnosis
    What tests do you need to do to assess if a person has Dementia: Mini mental state examination (MMSE): This is a brief 30-point questionnaire test. It takes about 10 minutes and examines functions including arithmetic, memory and orientation.  Abbreviated mental test score (AMTS): This was introduced in 1972 to rapidly assess elderly patients for the possibility of dementia.  Modified Mini-Mental State Examination (3MS) Cognitive Abilities Screening Instrument (CASI) Informant…
  • Dementia Symptoms and Signs
    The most common symptoms of Dementia are: • Memory loss, especially of more recent events  • Hallucinations and delusions • Confusion • Balance problems • Loss of bladder or bowel control • Sleep disturbances, including insomnia and acting out dreams — physically moving limbs, sleep talking, screaming, hitting or even getting up and engaging in daytime activities. • Difficulty finding their way around, especially in new or unfamiliar surroundings  • Problems finding the correct words…
  • Dementia Causes and Risk factors
    What causes Dementia The most common cause is Alzheimer's disease, which accounts for up to 60% of all cases. Alzheimer's disease is caused by the destruction of certain brain cells leading to the loss of the neurotransmitter acetylcholine. Vascular dementia, which occurs after a stroke, is the second most common dementia type. But there are many other conditions that can cause symptoms of dementia, such as thyroid problems and vitamin B complex deficiencies. Dementia can also be caused by…
  • Understand How Dementia Is Affecting Your Loved One
    Swapna Kishore was a caregiver for her mother for many years. She has created many online resources for dementia caregivers in India, including an English website, Dementia Care Notes and its Hindi version Dementia Hindi. Here, she answers some questions by PatientsEngage.  Please tell us about your mother's early dementia symptoms and how her condition progressed. My mother's early symptoms included mild disorientation, memory problems, and repeating herself…
  • Rigorous exercise may slow Parkinson’s Disease Progression
    Dr. Pettarusp Wadia, Consultant Neurologist and Movement Disorder Specialist, Jaslok Hospital and Research Centre, Mumbai, speaks to Dr Shital Raval about the latest treatments to manage Parkinson’s Disease.  Is Parkinson's a genetic condition? In about 5% of the adult population and 25% of the young-onset Parkinson's disease population, a single gene can be identified. However research is on to identify if certain genes make a person more susceptible to develop…
  • FDA approves tool for diagnosing dementia in a doctor’s office
    Cerebral Assessment Systems has received marketing approval from the U.S. Food and Drug Administration for Cognivue, a cognitive-assessment tool that functions somewhat like a video game. A patient can perform the inexpensive and simple test while a time-strapped primary-care physician tends to other patients. The 10-minute, non­invasive examination can detect subtle lapses in the brain’s perceptual ability that may signal the early stages of mental decline caused by dementia. The…
  • Managing my mother: From frustration for all to peace in the house
    Mrs. Kalyani talks about her 85-year-old mother and what it took to keep everyone happy. My mother, Vijayalakshmi, is 85 years old and her behaviour can be like that of a young child. She has mobility problems. She needs to be monitored 24x7, mainly to protect her from falling and injuring herself. My mother needs to be taken to the bathroom every 1 ½ hours to 2 hours without fail. Otherwise she would wet the bed or go in the room. While eating she wants the TV on and she will be so engrossed…
  • What can you do to prevent dementia
    The longer we live, the more likely we are to develop dementia. And, it is the one that tends to terrify us most. Evidence suggests that changing your lifestyle can help to reduce your risk of dementia. What does the current evidence really tell us about prevention? 1. Watch your body mass index In general terms, it appears to be healthier to be neither underweight nor obese in middle age. 2. Take regular exercise The study found that regular exercise (30 minutes walking…
  • Dick Lee named Alzheimer's Disease Association's ambassador
    Dick Lee has been a caregiver for his father, who was diagnosed with dementia a year ago. SINGAPORE: Singer-songwriter Dick Lee was on Tuesday (Mar 17) named ambassador for Singapore’s Alzheimer’s Disease Association (ADA) for a year, as the association celebrates its 25th anniversary. "It has been difficult seeing my father struggle with symptoms of dementia," said Mr Lee. The most trying moment he faced was when his father "shut down overnight" after a mild stroke that left the senior Mr…
  • An Overnight Nursing Home for Dementia Patients
    Provides respite care for Alzheimer's patients who suffer from "sundowning". Many with Alzheimer's are at their most active after dark. A New York care facility has launched an after-hours camp-style program to entertain them until the morning—and help their caregivers get some sleep. For months, Ortiz would sleep during the day and be up much of the night wandering around the apartment. Her daughter was too afraid to sleep—afraid her mother might fall and hurt herself or even try to leave…