Volunteering: Evolving by touching lives

 

Author– Dr. K. V. Ganpathy, Mumbai

Context:

Mr Ananth (name changed), the sole breadwinner in his family, was a Mathematics teacher by profession. He was referred to the Department of Palliative Medicine with relapsed Acute Myeloid Leukemia (AML). He was well aware of his prognosis and was accompanied by his wife and his school-going son, when he visited us.

Ananth was doing fine symptomatically.  However, he did experience pain; a manifestation of his cocktail of distresses. His distress cocktail encompassed:

• Distress arising due to him being unable to stay connected with his friends and peers
• Distress due to the fear of uncertainty about the illness trajectory
• Distress due to the guilt of burdening his family

Ananth had so many unfinished tasks that were intertwined with so many questions.

• “What will happen to my family once this distressing journey comes to a predictable end?”
• “How will my wife manage?”
• “What about my son’s education?”
• “Why is god punishing my innocent child by depriving him of the support and opportunities?”

Despite the multi-disciplinary palliative care team’s sensitivity to deliver quality care, the ‘peace’ that Anath was looking for kept eluding him.

One member of this muti-disciplinary team was curious of this elusiveness and therefore decided to walk the further mile with Ananth to explore what could be done to reduce this distress. This member was the volunteer on the multidisciplinary team, who emerged as a very important link in the delivery of total care.

It was during one of his regular visits to the ward, the volunteer saw Ananth lying on his bed, staring at nothing. His family was out on a small errand. Ananth’s breakfast lay by his bedside, untouched. The volunteer assumed that he was perhaps not even aware about it. Though hesitant, the volunteer initiated a conversation about the untouched breakfast and enquired if he would like something else. The tears that rolled down Ananth’s cheeks said it all… What followed after was a catharsis of how he had brought gloom to the family by leaving them with virtually no support – emotionally, psychologically, and financially as well. It appeared as though Ananth was waiting to pour out the ‘meaningless-ness’ of his life post the recent prognosis.

Once the catharsis slowed down, the Volunteer quickly gathered his wits to face the challenging situation he was in. He delved into his knowledge reservoir to unearth the palliative care concepts he had learnt during his days of formal training.  Concepts related to the goals of palliative care, quality of life, unbundling a patient’s source of distress etc. everything came gushing back to him. His thoughts were fueled by his desire to redress Anath’s distress due to his empathy for Ananth, his helpless wife and his innocent son.

An earlier conversation with Ananth had revealed to the volunteer, the quantum of distress Ananth was experiencing due to his inability to teach.  The volunteer therefore steered the conversation towards teaching and mathematics and finally offered Ananth an opportunity to teach children. Though initially reluctant, Ananth eventually agreed to it. The enthusiased volunteer, with the help of the medical social work department, scouted the nearby locality and was successful in identifying a few children to come to the hospital to learn mathematics from Ananth. The next few conversations between Ananth and volunteer revolved around one common theme; how Ananth felt ‘useful’ even while at the hospital. Over time the volunteer sensed Ananth’s dignity being restored.

Ananth then often spoke about the lack of financial security and support to his family. The volunteer discussed the matter with Ananth’s wife to learn if she possessed any employable skills. The volunteer was then able to help Ananth’s wife get employed with a tailoring job, which provided her with a decent monthly income. Ananth’s second major distress was now resolved as he saw his wife employed and productively occupied.

His only other distress revolved around his son’s education. The volunteer once again leveraged his networks and identified a donor who committed to sponsoring Ananth’s son’s education up until he became employable.

The cumulative effective of all these developments, brought Ananth the much needed ‘peace’ which eluded him until now and also provided him with a sense of closure. Ananth and his family extended their eternal gratitude to the volunteer.

Ananth then said, “I am now ready to die.”

It is crucial to note that one may not be successful every single time; but listening to a patient about their concerns and fears can help, on several occasions.

There are many inspiring and selfless stories about volunteers who have contributed towards reducing their patients’ distress burdens by doing their own little things, which are often a lot impactful. These little things stem from their empathy, listening, networking, and resourcefulness – the four vital skills that complement the medical management and improve the psychological preparedness of the patient and their caregivers during the patient’s final journey. Accompanying patients’ and their caregivers through a journey of illness and care giving also results in meaningful bereavement support and grief management.

Such stories and episodes only reinforce that volunteering is indeed a positive and meaningful experience. In addition to the four vital skills empathy, listening, networking, and resourcefulness, the ability to make meaning out of life experiences can help one effectively deal with the daunting situations of patients’ illnesses and the suffering of their caregivers’.

Finally, the decision to volunteer in a palliative care setting is often a matter of choice to either sublimate one’s own grief to those of others or a natural call to help those in suffering.  It is important to be mindful of the approach one adopts while choosing to volunteer. An individual’s personal characteristics, their insightful communication, and their emotional robustness can help in great extent to manage one’s own stress and compassionate fatigue while dealing with ‘death and dying’. Beneath the volunteering experience rests a sense of peace and meaning, both of which lead to an opportunity to evolve.

To conclude volunteering is therefore definitely about giving one’s time, resources, and compassion, but also receiving the satisfaction of having ‘touched lives’, while continuing to handhold and accompany many more in their journey towards the sunset.