Many cancer patients and their families experience existential distress long before death. In the UK a General Practitioner (GP) is well placed to recognise and respond to this. One of the privileges of being a family doctor is building relationships with patients over time – older GPs may know generations of the same family from birth to adulthood to parenthood. Even without specialist training in palliative care, a GP plays a crucial role in supporting patients and families through life events including death and bereavement.
Primary healthcare in India is fragmented with major differences between states in economic resources and availability of healthcare workers. Provision is by both the public and private sector, and by various healthcare practitioners including those practising indigenous systems of medicine (ayurveda, unani, siddha, and homeopathic medicine—AYUSH) and traditional healers without any form of training. Many patients do not access primary care, and those that do receive a variable quality of care. This has a detrimental effect on health outcomes, including late presentations of diseases such as cancer – something I see daily in my work here. It also means that patients and families living with terminal illness commonly do not have the support of their family doctor. Although the palliative care teams do a great deal to support these families, their resources are stretched and they are unable to treat every member of the family as their own patient.
I met two families in the same week where a good GP could have been lifesaving. Both families had tragically lost someone through suicide. These suicides were a consequence of the huge strain the families were under because of chronic or terminal illness. In India, a quarter of documented suicides are as a result of family problems and an additional fifth due to illness.
I met Safiya* in a government hospital in Kerala. She was on a ward labelled ‘Adolescents with behavioural problems and mental illness’ – a small (10x15ft) crowded room with 6 other patients and their family members. Some of the patients looked like they were on the appropriate ward, she was not. She was just twelve months old and had a tiny bird like body with a huge head and sun-setting eyes. She was very quiet and still – she couldn’t move her limbs, was blind and deaf. She was fed through a nasogastric tube and needed regular repositioning to prevent bedsores. Safiya had been in this hospital for over 350 days of her short life. She was born a normal baby at a normal time but contracted menigitis in the first week of life. She went on to suffer multiple complications starting with hydrocephalus (a build up of fluid in the brain and an expanding head size). She had an operation to drain the fluid but the tube that was placed became infected. This was replaced and became infected again. This happened a number of times and she eventually developed abscesses in her brain that were no longer responding to treatment.
In India much of the basic nursing care in hospital is done by the family. Safiya’s mother or grandmother needed to be present 24hrs a day, sharing her bed and that small room with twelve or more other people. The government hospitals are so over-crowded that privacy, comfort and often dignity can be overlooked. Her family were very poor and lived in a village a few hours outside of the city. Safiya’s father was a farmer and the sole earner of the family, looking after his young wife, his parents and struggling to meet the spiralling medical costs of Safiya’s care. With no support, the financial and emotional burden of Safiya’s situation overwhelmed him –tragically he hung himself when she was 6 months old. The palliative care team became involved six months after his suicide. They moved Safiya to a private room in the palliative care hospital, where the family received more support and counselling. She died two weeks later.
The second patient I met was Somnath*. At the age of twenty eight he fell out of a tree, broke his back and was paralysed from the waist down (see footnote 1). Somnath went from being an active young father and breadwinner of the family to being completely dependent on his mother and wife for around the clock care; feeding, toileting, washing, turning in bed. His mother is a dominant woman and often controlling. After the accident her relationship with Somnath’s wife, her daughter-in-law became increasingly strained. About one year later Somnath’s wife took a fatal overdose.
Both of these cases are desperately sad and give us some insight into the burden families feel when trying to cope with sickness. The knock-on effects of chronic and terminal illness in India are more extreme than those experienced by families in the UK. The financial burden of loss of employment in addition to medical costs can impact on the socioeconomic status of a family for generations. Children are taken out of school early in order to work, and hopes of education and a career are jeopardised resulting in a cycle of poverty and destitution. This, along with the demands of being a full-time carer or facing the death of your child can lead to suicide.
What would a GP do to support families like this? Like palliative care, GP is based on a philosophy of patient-centred and holistic care; seeing the person beyond the disease within the narrative of their life story. Understanding the patients family dynamics, work situation, financial stressors and emotional distress can build up a much clearer picture of the patient’s problem. Of course, recognising warning signs of depression and suicidality would be a priority, with prompt treatment and regular follow-up or referral. GPs are trained in open and sensitive communication; to be able to talk to patients facing their own death or that of a relative. Doing so helps a person begin to grieve, talk about fears and anxieties, process and prepare. In addition to this, ongoing contact with the patient and family (continuity of care) means that the GP can help organise and co-ordinate other services available to that patient including palliative care, psychiatric services, home carers, counselling or a patient-support group as well as signposting to benefits schemes and charities. We are extremely lucky to have universal health coverage and a welfare state, so that families in crisis have a number of safety nets. Most of these services are not available in India. However a family doctor, with the right training and regular contact could support these families in many other ways. Listening, spending time and recognising warning signs may be enough to prevent unnecessary deaths through suicide.
Family doctor delivering care at home
*Names changed for patient confidentiality
(1) In Kerala the palliative care team also looks after people with disabilities such as paraplegia – they do this because there is a desperate need and no services. A huge number of young men are paralysed as a result of trauma; workmen fall from bamboo scaffolding, motorcycle accidents and falls out of coconut trees just to name a few.