Equal access to palliative care – Leave no older person behind

Equal access to palliative care – Leave no older person behind

– Dr. Amy Siew, Bengaluru

India had nearly 104 million older persons (60 years and above) in 2011¹. The size of this population is increasing over time. While the average life expectancy has increased due to medical advancements, it is important to note that there has also been a corresponding increase in issues such as disability, dependency, neglect and abandonment.

Caring for older persons has its nuances. One needs to be aware of potential problems with activities of daily living like feeding, ambulating and use of appliances, to provide as much independence as possible for the individual. Medication reconciliation is important and new medications should be prescribed carefully, after understanding the altered metabolism in an older person. The dictum is ‘Start low and go slow’.

The geriatric palliative care integrated approach aims to improve the quality of life of older persons near the end of their lives. It assists patients and their families to define the goals of care and transition from the goal of functional recovery to a purely comfort-oriented goal². Guidelines such as the Gold Standards Framework Proactive Identification Guidance (PIG)³ can assist physicians in knowing when to involve palliative care specialists. For the frail and persons with dementia, the PIG employs the “surprise question” and includes indicators, both general and specific, such as the Barthel score and walking speed.

Recognizing the need for this integrated approach, the Indian Academy of Geriatrics (IAG), Alzheimer’s and Related Diseases Society of India (ARDSI), HelpAge India (HAI) and Indian Association of Palliative Care (IAPC) brought out the “Delhi Declaration for Palliative Care and End of Life Care for Older People” during the International Conference of the IAPC in February 2018⁴. The declaration called for the Indian Government to ‘ensure that every older citizen with advanced life limiting diseases including cancer and various forms of dementia, is offered the best possible palliative and end of life care wherever they are cared for’⁵.

In Karnataka, especially in Bengaluru, there are a growing number of geriatric specialists, care centers and organizations focusing on providing geriatric care both at institutions as well as home-based care. The Bangalore Baptist Hospital (BBH), St. John’s Hospital, CSI Hospital, Nightingales, and Advantage are a few of the several centers which offer such services. While there are many centers that cater to the needs of older persons, only a few of these centers have received training in palliative care.

Since its inception in 1995, the Palliative Care Department in BBH has always been inclusive in its approach of caring for people with various advanced diseases including cancer. While its priority is symptom management (especially pain) for patients with end stage disease, care is also extended to frail older persons. 70% of the departments’ patients are aged 60 and above, and an approximate 15% of these patients are frail or have cognitive impairment with no other significant co-morbidity. The multidisciplinary team (doctors, nurses and counselor) liaises with the Geriatric Department’s Age Well clinic as part of their ‘hub and spoke’ model, to provide integrated holistic care to patients. This team visits patients at home (in urban and rural areas) once every 1-2 months to provide care. During the peak of the pandemic, care was delivered mostly remotely through proxy visits and tele-consultations. Families are empowered to care for their loved ones and are supported through the department’s 24 hour helpline. Ensuring support to caregivers is vital as they often juggle multiple responsibilities while continuing to care for their loved ones over prolonged periods of time. Innumerable patients and their families have benefited from this support and they express their appreciation during bereavement visits or during the memorial service that is hosted by the department every year.

Above all, respect for the older individual who has longer lived experiences, should overarch everything. Health decisions, especially advance directives, made with mental capacity, should be respected by all, especially the family. These often-difficult conversations need to be documented and approached with sensitivity.

As many older persons lack access to care, especially palliative care, let us all do our part to not leave any older person behind, as we continue to care for and respect them in every way!

References:

1. Government of India. Ministry of Statistics and Programme Implementation. Elderly in India-Profiles and Programmes; 2016. Available from: http://www.mospi.nic.in/sites/default/files/publication_reports/ElderlyinIndia_2016.pdf. [Last accessed on 2021 July13].
2. Voumard R, Truchard ER, Benaroyo L, Borasio GD, Büla C, Jox RJ. Geriatric palliative care: a view of its concept, challenges and strategies. BMC geriatrics. 2018 Dec;18(1):1-6.
3. Thomas K, Armstrong Wilson J, GSF Team. Proactive Identification Guidance (PIG) National Gold Standards Framework Centre in End of Life Care. 2016.
4. Indian Association of Palliative Care. Delhi Declaration for Palliative Care and End of Life Care for Older People. Available from https://www.palliativecare.in/delhi-declaration-for-palliative-care-and-end-of-life-care-for-older-people/ 25 February 2018. [Last accessed on 2021Jul13]
5. Macaden S. C. Delhi Declaration for Palliative Care and End of Life Care for Older People. Available from https://ehospice.com/international_posts/delhi-declaration-for-palliative-care-and-end-of-life-care-for-older-people/. Oct 2018. [Last accessed on 2021Jul13]