As part of its commitment to developing culturally competent, sensitive services (CSS) to meet the needs of their local ethnic minority communities, The Prince & Princess of Wales Hospice in Glasgow established a CSS project, led by Barbara Love, Clinical Nurse Specialist for Widening Access, and Majabeen Ali, Cultural Liaison Officer.
Following a successful application for a travel scholarship from the Florence Nightingale Foundation, the project team recently travelled to India to observe and compare palliative care practice in India with the current service provision within the hospice/hospital palliative care teams in Glasgow.
A second focus of the trip was to study the cultural differences and potential challenges of providing palliative care to a diverse Indian population from multi-faith communities and different social economic classes. Throughout the visit the barriers to accessing palliative care services in India were observed as well as cultural norms that might impact on clinical practice in the UK.
The team first travelled to Pune in the state of Maharashtra where we visited the Cipla Palliative Care Centre, a 50-bedded symptom management/respite care centre. While there, we participated in a march for the centre’s World Palliative Care Day, an annual event that aims to raise awareness of palliative care.
Following this, we visited the Tata Memorial Cancer Hospital, where we spent time with the palliative home care team visiting cancer patients in the slums of Mumbai.
We concluded the trip by visiting Shanti Avedna Sadan, the first hospice to be established in India in 1986. This is a 100-bedded hospice that is a charitable organisation run by the Sisters of the Holy Cross Catholic Order.
Approximately one million new cases of cancer occur each year in India, with over 80% presenting at an advanced stage of their illness.
Around 6 million people are likely to need palliative care per annum. These figures are likely to grow due to increasing life span and a shift from acute to chronic illnesses. An estimated 60% of the people dying annually will suffer from prolonged advanced illnesses and fewer than 3% of the needy will have access to palliative care.
The concept of palliative care is relatively new to India, having been introduced in the mid-1980s. Hospice and palliative care services have developed through the efforts of committed individuals, health professionals and volunteers, in collaboration with non-government and international organisations.
Palliative care services have to serve high-density populations, the majority of whom are living in impoverished circumstances across huge geographical areas. Hospices are rare in India. Only 16 of India’s 28 states and 7 union territories (less than 45%) have any palliative care services at all. Existing services are usually concentrated in large cities and regional cancer centres. Also, many states in India have no medical facilities which prescribe morphine for pain relief.
Barriers to the development of palliative care in India include: poverty, population density, geography, opioid availability, workforce development, and limited national palliative care policy. In contrast, these factors are less of an issue in the UK.
Collusion – a cultural norm and potential challenge?
The project team attended the palliative care out-patient clinic at the Tata Memorial Cancer Hospital during their visit. Many patients had travelled from outside the state of Maharashtra, sleeping on the streets overnight prior to their appointment.
All patients observed were accompanied by a younger adult relative (usually son, daughter or daughter-in-law) and during the patient’s holistic assessment all questions posed by the doctor were directed to and answered by the accompanying relative.
The act of collusion was very evident. Many patients appeared either not to know their cancer diagnosis or thought they were attending the palliative care centre in order to be “cured”.
In India it is a cultural norm for the eldest son to act as head of the family. As such, they are usually addressed by the clinical practitioner during any consultation as the key decision maker, rather than the patient themselves. This is in contrast to expected practice in the UK which adopts a patient-centred model of care. This highlights the potential challenges when caring for patients who are first and second generation migrant Indians within the UK.
Familial duty of care – perceived expectations
The majority of palliative care services that have been developed in India are home-based, relying on family support.
This is well suited to conditions in India where a family member is usually available and willing to nurse the sick person in their own home. Many women in Indian families are expected to care for their sick relative as a cultural duty. It is also cost-effective reducing medical fees and travel expenses to the hospital for follow up visits.
First and second generation migrant Indians in the UK may be unaware that palliative/ hospice care is free to all UK residents and still feel a cultural obligation to care for their sick relatives. These may be barriers for the uptake of palliative care.
Workforce development – collaborative working
To enhance the development of palliative care in India, organisations within the UK could support their workforce by increasing their skills and knowledge via collaborative working.
In summary, the extent of poverty observed in India was humbling and thought provoking. However what will be remembered more than anything was the unfailing commitment, love and respect shown by every member of staff who worked in the organisations that were visited. Doctors, nurses, social workers and volunteers all showed these qualities uncompromisingly. It is through their dedication to teamwork that these organisations are able to deliver holistic care to their patients in these very difficult circumstances and that is to be greatly admired.
In conclusion, the element that is shared between the UK and India is their values for compassion and respect for the dying.
The PPWH Hospice Widening Access Project was supported by grants from The Florence Nightingale Foundation, the Burdett Trust for Nursing administered through Help the Hospices and funding from the Scottish Government.