The Role Of Palliative Care In Supporting SMA Patients

Spinal Muscular Atrophy (SMA) is a genetic disorder characterised by the progressive degeneration of motor neurons, leading to muscle weakness and atrophy. While medical treatments and therapies have advanced significantly in recent years, palliative care plays a vital role in supporting SMA patients throughout their journey. It focuses on improving the quality of life for patients and their families, addressing physical and emotional needs, and offers holistic support enhancing overall well-being and providing comfort.

What is palliative care?

Palliative care is often misunderstood as end-of-life care, but its scope is much broader. It begins at the time of diagnosis and continues throughout the course of illness, regardless of whether the patient is receiving curative treatment. These specialists work alongside medical teams to manage symptoms, alleviate pain, and enhance the overall quality of life.

A diagnosis of SMA can be overwhelming for patients and their families. Palliative care professionals provide emotional support, helping individuals cope with anxiety, grief, and uncertainty. They facilitate open discussions about prognosis, empowering patients to make informed decisions about their care. Additionally, support groups and counselling services offer opportunities for individuals to connect with others facing similar challenges, fostering a sense of community, and understanding.

SMA impacts not only the individual diagnosed but also their family members who serve as caregivers. Palliative care adopts a family-centered approach, recognising the integral role of caregivers in the patient’s journey. Education and training are provided to caregivers to equip them with the knowledge and skills needed to support their loved one effectively. Respite care services offer temporary relief for caregivers, preventing burnout and promoting their well-being.

How to manage symptoms in SMA?

Physical Therapy: Maintaining mobility and strength is paramount for individuals with SMA. Physical therapy, tailored to the specific needs and abilities of the individual, plays a crucial role in preserving muscle function, improving range of motion, and preventing complications such as joint deformities. A skilled physical therapist can design personalised exercise regimens and provide guidance on adaptive equipment to optimise independence and enhance quality of life.

Respiratory Support: Respiratory complications are common in individuals with SMA, necessitating proactive management to maintain optimal lung function and prevent respiratory infections. Regular monitoring by pulmonologists is essential to detect and address respiratory issues promptly, minimising the risk of respiratory distress and enhancing respiratory health.

Nutritional Support: Proper nourishment plays a vital role in supporting overall health and well-being in individuals with SMA. Dietary interventions, such as optimising calorie and nutrient intake, may be necessary to address feeding difficulties and promote growth and development. Nutritionists can collaborate with healthcare teams to devise individualised meal plans and address swallowing difficulties, ensuring adequate nutrition while minimising the risk of aspiration and malnutrition.

Ultimately, the goal of palliative care for SMA patients is to enhance their quality of life. Beyond managing symptoms and addressing practical needs, palliative care focuses on promoting moments of joy and fulfilment. By emphasising quality of life, palliative care honours the inherent dignity of each individual, irrespective of their medical condition.

The author is a Pediatric Neurology Consultant, Associate Professor, T.N.M.C. & B.Y.L.Nair Hospital

Dr Alpana Kondekar

Guest Author