About the Author:
Sr. Hanife MacGamwell is the Nursing Education Coordinator, at both IAPC and ELNEC India. She is an Oncology, Hospice and Palliative Care Nurse Specialist and a Public Health Nurse who has worked in clinics across the world and trained nurses in North Africa, Surinam, China, Nepal and India.
Last month we celebrated the world hospice and palliative care day with brilliant events, reaching out to communities and touching hearts to heal. We also came up with ideas and plans to broaden our work, launched new programs and raised awareness in many different aspects of Palliative Care although we may still have miles and decades to go, to reach a more efficient and sustainable Palliative Care delivery. There has been a huge progress, albeit in baby steps. and it is continuing.
On the International Day of Eradication of Poverty, there is truly not much to celebrate, but much to contemplate to plan to work on and to raise awareness of this multi-dimensional monster that lurks its head in each and every part of this world we live in. When we talk about poverty we talk about: absolute poverty versus relative poverty, primary poverty versus secondary poverty.
In absolute poverty, there is simply not enough. It is about survival. The income is below a certain line that is drawn by the countries these people live in; whereas in relative poverty, the income is said to be 50% less than the average income and for these people it is simply about trying to survive. There’s no place for anything else. To hear about or to see the devastation that comes with absolute poverty can be mind boggling. The lack of even the most basic human needs, and with children dying of hunger.
Then, there is the society these people live in, and yes, the politics. Day to day each one of us deal with this reality in our simple modest ways and somehow help to make a tiny difference in one way or another and hope for days of sustainability. It is said the absolute poverty is fixed and relative poverty can also be fixed?
I strongly believe that multidimensional aspects of poverty come to play in every aspect of poverty.
The poverty of isolation, the poverty of culture, education or training. The poverty of a future where there is neither the desire to grow nor the ability or tools to break the walls. The poverty of self as the heart hardens, the poverty of will and love, the spiritual poverty, and as we see each and every day, the poverty of the body due to an illness.
A 58 year old construction worker, hospice patient of mine insisted on renewing his hospice eligibility three times. He learned how to write his name along with his children’s and wife’s names. He learned how to draw and paint and attended live classical music concerts for the very first time in his life. He also started to pray – he said just to show my gratitude. A few weeks before he died he also said “I guess this is what they mean by the silver lining, thank you, please make my two boys see also”. These are his exact words from my journal.
Assessment may mean evaluation of a patient’s condition and more. The Latin origins of this word simply means ‘to sit beside’. It is a continuous process that needs to be documented and followed up. So. next time we ‘sit beside’ our patients and / or their families and care givers, please make time for really good physical, social, emotional and spiritual assessments and also make referrals to a social worker or put it on our shoulders to find the funds or the relevant schemes, and the ration and sometimes even more! Let us be more aware ourselves, of many different dimensions of poverty effecting their lives. However short the time may seem, there may still be time to help them and their care givers, families ‘to see’.
Poverty has so many faces and many more kinds besides the ones I barely touched upon. I simply put some thoughts and information which is perhaps already known to most of those reading this. I simply wanted to juggle the minds in a simple humble way. In trying to do so, there is one more kind of poverty I want to mention: the poverty of the period.
As we are all aware it has huge physical, social, emotional spiritual implications in many countries; and when we ‘sit beside’ our patients, care givers and their daughters, let us make the time to talk about the ‘period poverty’. Lack of menstrual products, lack of education, lack of sanitation, lack of facilities to dispose the waste, and the lack of tools to cope.
Patients may have menses during their treatments, so do their female caregivers. How are they dealing with this? Are they victims of ‘period poverty’? Girls with cerebral palsy, teenage girls with osteosarcoma having lost a limb still menstruated. Not only there are very practical, absolutely essential practical aspects of using the pad and placing the pad, we have to teach the patients and their care givers all the other aspects of period poverty, which truly need to be addressed.
Martha Rogers was a truly a great nursing professor at New York University. She was also a theorist. Difficult to understand not always clearly laid out. There are many parallels between Nightingale and Rogers. One thing is clear: there is the art and the science of nursing and nursing is learned! Patient’s health is hugely impacted by his or her environment. Nurses too are part of this environment and have a huge impact. In her book ‘Reveille’ she states “Man is at the center of nursing’s purpose”. She also says, “Man is more and different from the sum of parts”. This, she wrote in her book ‘Reveille’ in 1960s. A futuristic book one might say at the time. As the title suggest it is a wake-up call. For certain, it was for me in the early 80’s when I first read it.
Writing about Martha Rogers when talking about poverty may seem odd, but it IS all connected!
Next time we ‘sit beside’ our patients’ may we be able to make the time to see and help our patients and caregivers ‘to see’. So many faces of poverty, but we do have so many tools to touch these faces with, even if gently and short, and help alleviate in some little ways, one patient, one family at a time if we try to see!!
Note:
This article is a republication from the Indian Association of Palliative Care’s monthly newsletter: November edition.
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