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They must take on the role of the confidante, support system, and medical advisor - all the while maintaining a strong exterior

Palliative caregivers on how they cope with seeing pain and death
Features Health Friday, June 10, 2016 - 18:03

“My special daal tadka!”

“I love you, Michael.”

“Tell my daughter I approve of her choice.”

“Tell my mother goodbye.”

These last words of dying patients to nurses offer a glimpse of the burden that caregivers like them have to carry.

The video, featured by Indian Association for Palliative Care (IAPC), shows various working and retired nurses as they laugh and cry, recounting the patients they have had under their care. And while everyone knows of the physical, emotional and financial ordeal that comes with the diagnosis of a prolonged illness, there is seldom talk about the emotional and mental effort that goes into being a caregiver.

The word palliative is derived from the word ‘palliate’ which essentially means to ‘lessen the severity without curing’ or ‘alleviate without curing’.

Palliative care consists of relieving and reducing pain - not only for terminally ill persons but also persons undergoing painful medical treatments, says Anil Palleri, director of IAPC. “Palliative care can begin from day one, which is the diagnosis. That is when the suffering really begins – not just for the patient but also for their family,” he adds.

However, what of the emotional and mental health of palliative caregivers who attend to multiple patients day in and day out, with the knowledge that some of them are going to pass on no matter what they do?

“The goal of palliative care is to improve the quality of life,” explains Dr Mallika Tiruvadanan, palliative specialist and managing trustee at Lakshmi Pain and Palliative Care Trust, Chennai. “There are three aspects of palliative care - treating the physical symptoms of the disease, then to provide psychological and emotional support with effective communication and finally, disease modification,” she elaborates.

Palliative caregivers have to go beyond their role of medical practitioners administering painkillers. They take on the role of confidante, support system, and medical advisor, as and when required by the patient or family.

Surrounded by sickness and despair, and knowing their primary job is not to cure but only to put patients at as much ease as possible, these doctors and nurses require exemplary emotional and mental strength.  They are often forced to walk a tightrope. The work is such that palliative caregivers often forge bonds with patients. But what if the person does not get better? How do the caregivers deal with the loss and suffering?

Stella Timung has been working in palliative care at the Calicut Medical College Hospital for about three decades. While her background in the army previously helped her become emotionally stronger to deal with death and sickness, she admits that sometimes it becomes quite difficult to contain her emotions, especially when dealing with younger patients.

“Of course I get emotional, but I try not to bring too much back home with me. Once I get off work, I read, watch some television,” she says. “We have to learn to control our own emotions no matter what happens. It’s already so difficult for the family and the patient. We see five to six such patients every day, but we can’t make it worse by breaking down in front of them,” she explains.

Emotional decorum is something palliative caregivers are required to maintain at all times. A study called ‘Caring for the Caregiver’ by the Florida International University showed how palliative caregivers working with children are compelled to put on an “appropriate face regardless of actual emotion”. Further, constant face-to-face interactions with the patients meant suppressing some very intense emotions.

The study found that often, palliative nurses tended to develop a closer relationship with the ailing child than the physician himself/herself. Therefore, when such a patient died, nurses often experienced “anger, sadness, anxiety, and helplessness” but were unable to express it openly unlike the family or kin of the patient.

Palleri explains that in a field like palliative medicine and care, death need not be seen as a medical failure. “Often, doctors cannot handle death because they see it as their failure. They need to understand that in cases of terminal or incurable illness, the aim is to help the patient live a life of dignity till the time they die. That way, they will not consider death a failure and will be able to fulfil their role are caregivers better too,” he offers. “Only when you keep yourself healthy (mentally and emotionally) can you help others,” he asserts.

Meanwhile, Pratheepa, who has been working as a nurse for four months at Lakshmi Pain and Palliative Care Trust, says that it is her job to be there for the family and patient regardless of her emotions about the situation. However, she makes it a point to talk about it with her family.

“I go back home and speak to my relatives about the patients I attended and what happened in the day. But here, we must let them (patients and their family) cry and let out their emotions without making them feel sorry for themselves,” she says.

Stella says it is talking with other nurses at the end of the day which helps her deal with the emotional stress of the job. “We (nurses and staff) sit together and talk. When we start sharing, it eases the burden,” she says. “Personally, I try to retain the good things and not carry the suffering. There are so many patients and while I remember their suffering too, I try to recall the good moments with them,” she adds.

Dr Mallika says that despite all emotional stress, what drives palliative caregivers is their desire is to do justice to their profession. “We commit ourselves to help them (patients) feel better and to be there for them. That’s what keeps us going,” she signs off.

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