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Families in Crisis

Author: Dr Hannah Fox & Kate Jackson
31 October 2016

Many cancer patients and their families experience existential distress long before death. In the United Kingdom, a general practitioner (GP) is well placed to recognize 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 health care in India is fragmented, with major differences between states in economic resources and availability of health care workers. Provision is by both the public and private sectors, and by various health care practitioners, including those practicing 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.

Baby Safiya

I met Safiya in a government hospital in Kerala. She was on a ward labelled “Adolescents with behavioural problems and mental illness” a small (10 × 15 ft) crowded room with six other patients and their family members. 

Some of the patients looked like they were on the appropriate ward, she was not. She was just 12 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, and 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 meningitis in the first week of life. 

She went on to suffer multiple complications starting with hydrocephalus (a buildup 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 24 hours a day, sharing her bed and that small room with 12 or more other people. 

The government hospitals are so overcrowded that privacy, comfort, and often dignity can be overlooked. Her family was very poor and lived in a village a few hours outside of the city. 

Safiya's father was a farmer and the sole earner for the family, looking after his young wife, his parents, and struggling to meet the spiraling 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 six months old. The palliative care team became involved 6 months after his suicide. They moved Safiya to a private room in the palliative care hospital, where the family received free support and counselling. She died two weeks later.

Somnath

The second patient I met was Somnath. At the age of 28, he fell out of a tree, broke his back, and was paralyzed from the waist down. 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 paralyzed as a result of trauma; workmen falling from bamboo scaffolding, motorcycle accidents, and falls out of coconut trees, just to name a few.

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. It all became too much for Somnath's wife to cope with and about one year after the accident she 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 United Kingdom. 

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 general practice physician or palliative care team do to support families like this? 

Both specialties are based on a philosophy of patient-centered and holistic care; seeing the person beyond the disease within the narrative of their life story. 

Understanding the patient's family dynamics, work situation, financial stressors, and emotional distress can build up a much clearer picture of their problem. Of course, recognizing warning signs of depression and suicidality would be a priority, with prompt treatment and regular follow-up or referral. 

Both GPs and palliative care workers 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, a GP's ongoing contact with the patient and family (continuity of care) means that they can help organize and coordinate other services available to that patient, including palliative care, psychiatric services, home carers, counseling, or a patient-support group, as well as signposting to financial support schemes and charities.

The United Kingdom has 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 recognizing warning signs may be enough to prevent unnecessary deaths through suicide.

Conclusion

These cases provide a small glimpse into the experiences of families and patients with life-threatening illness in Kolkata and Kerala, India. They illustrate the degree of suffering faced, and in certain circumstances the relatively simple measures that can be taken to alleviate this. 

For the current situation in India to improve there needs to be better access to essential pain medications such as morphine, education of health care professionals and the public, as well as the implementation of government pain management and palliative care policies.

This article was originally published as part of the series: Narratives in Pain, Suffering and Relief in the Journal of Pain & Palliative Care Pharmacotherapy. It is republished with permission. To view the original article please visit the journal online.

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