About the Author:
Dr. Shrikant Atreya, is a Consultant at the Department of Palliative Medicine and Psycho-oncology, Tata Medical Center, Kolkata.
Epilepsy is a medical condition that can range from benign, self-limiting seizures to seizures that can be treated medically or surgically or to a medically or surgically refractory condition. Patients with refractory seizures have a complex health condition. The disorder, in addition to causing physical discomfort, also causes cognitive decline and psychosocial distress, which dampen the patient’s quality of life. Although the patients are at the nucleus of the problem matrix, their problems are enmeshed in a complex social and environmental milieu. There is evidence in the literature mentioning the importance of addressing the complex problems of epilepsy, but minimal efforts have been invested to address these complex concerns.
There is growing recognition of palliative care in the field of epilepsy. Palliative care, with its human-centric, multi-pronged, and holistic approach, can address the gaps in care provision for patients with palliative care by addressing the complex physical and psychosocial symptoms, enhancing spiritual wellbeing, setting goals of care, facilitating advance care planning, and ensuring seamless and peaceful end-of-life care. Thus, palliative care preserves the value of life and the patient’s dignity by meeting the patient’s desire and goals of care and avoiding unnecessary care, such as hospitalisation in a terminally ill patient.
Quality palliative care can alleviate the sufferings of patients with refractory epilepsy and their family caregivers by:
- Identifying epileptic patients in need of palliative care
- Developing strategies to address the complex physical and psychosocial symptoms in epileptic patients
- Setting realistic goals of care and advance care planning
- Providing collaborative care between the palliative care team, the neurologist, and other team members
- Providing support to family caregivers
Identifying epileptic patients in need of palliative care
Patients with refractory epilepsy, experience anticipatory worries about seizures, emotional turmoil, social dysfunction, social embarrassment, social isolation and difficulties in coping with the predicament. Additionally, medications also complicate symptoms and compound the problem further by causing cognitive and behavioural dysfunction. Although, identified as an important aspect of care in literature, it is often overlooked and undertreated in clinical practice. A Neurologist could thus integrate themselves with the palliative care team as the palliative care team could help in identifying the physical and psychosocial concerns of patients and strategize care plans in alignment with the patient’s need.
Developing strategies to address the complex physical and psychosocial symptoms in epileptic patients
A multidisciplinary team comprising of a neurologist, trained palliative care clinicians, a psychiatrist, and a community team may play a vital role in identifying symptoms and providing symptom management for patients with refractory epilepsy. Furthermore, with this approach, team members bring in their expertise at various stages in the patient’s disease trajectory to ensure that impeccable care is provided which aligns with the patient’s values and desires. Some of the common symptoms encountered in these patients include mood disorders, depression, behavioural changes, fatigue, sleep disturbances, pain, and headaches. Palliative care approaches include managing the intractable symptoms, coordinating with the psychiatry and psychology teams for psychosocial concerns, and mobilising resources (such as social workers or spiritual healers) to help patients cope with the predicament.
Setting realistic goals of care and advance care planning
Goals of care are the mutual decisions made by patients and their health care professionals about their desires, value attributions, beliefs, and expectations and the setting of realistic goals to achieve them. Of course, of prime importance would be medical care goals, as this is what patients would seek from health care professionals. But as responsible health care professionals, it may be prudent to identify what is on a patient’s bucket list and align care to suit their goals. As health care professionals, we must go above and beyond to educate and empower patients and families about their prognosis and care options, including the location of care, to facilitate treatment decision making, to engage and empower patients in managing their symptoms, and to ensure a smooth transition to the end of life.
Providing collaborative care between the palliative care team, neurologist, and other team members
Although available literature has proven beyond doubt that well-coordinated interdisciplinary care ensures good quality of life, this still remains a challenge in patients with refractory epilepsy. This frequently results in huge gaps in care and increases the burden on patients and their families to navigate the system. The palliative care team, with its ethos of team-based care, coordinates between team members, identifies the issues in care coordination, and irons out the problems by concluding on a common care pathway by mobilizing resources specific to the needs of a patient/caregiver to ensures seamless care.
Supporting family caregivers
Although the patients are at the nucleus of the problem matrix, their problems are enmeshed in a complex social and environmental milieu. Family caregivers play a vital and a multifaceted role in delivering care. As in, in addition to being a caregiver, they may also be a parent, a spouse, a professional, or the sole bread-earner in the family. This elevates their position as a caregiver. They may also go through the same emotional turmoil as the patient, such as anxiety, depression, stigma, frustration, hopelessness, helplessness, and guilt. The palliative care team can engage with family caregivers and identify their concerns. This engagement with the family members can be to educate the family caregivers about what to anticipate, the signs and symptoms of an impending seizure, the ways of providing first aid care, whom to contact, and how to reach the palliative care team. They can navigate resources to provide psychological and spiritual support to families. Finally, the palliative care team can identify family members with anticipatory grief and provide timely interventions such as referring them to psychiatrists to prevent and manage complicated grief.
Considering the high symptom burden and the resultant suffering that patients with refractory epilepsy and family experience, it may be prudent to integrate palliative care early on into neurology care. As has been explained in the excerpt above, an integrated neurology-palliative care program will ensure that patients and families are being provided impeccable care by a team of specialists. Also, an integrated approach will facilitate the smooth navigation of patients through end of life by respecting their wishes for their preferred kind of care and their preference for place of care and death.