She says...study, death, culture and stigma

I've had the incredible opportunities this week to interview a 'Siberian' Oncologist about her involvement in the establishment of palliative care into her hospital of employment, and to interview an older gentleman who cared for his wife through her battle with breast cancer and eventual death.

My mind and emotions are still reeling in response to what I heard. There is little, if any structure to it right now, so the outlook for my assignments due soon isn't impressive. Yet I feel the need to write about the experience and my learnings anyway, without giving too much thought to the hundreds of articles I've been reading or the need to critically analyse what I heard.

It was somewhat serendipitous that I chose palliative care as my topic of choice. I stumbled across a paper about palliative care for oncology patients in 'Siberia' on the online ANU library. I noted the author's name and google-stalked her email address. Not really expecting a reply, I sent a short email requesting permission to interview her. She replied the same day with a great deal of enthusiasm and agreed to meet me and welcome me into her clinical world.

As I had expected, she has faced and continues to face challenges in her 'mission' to see palliative care become an integrated part of patient care from every angle; her colleagues, the hospital administration, the government and, naturally, her patients and their families have expressed varieties of disinterest, concern and even outrage, and those in authority have actively prevented progress. However, she has prevailed, and now has an active Palliative Care unit at the hospital. Sadly, it isn't yet integrated into the hospital system, and without money and acceptance, it won't become so. This means that patients must be referred by their own Specialists, which is fraught with problems because many of those Physicians consider palliative care to be luxurious. One Oncologist even threatens his patients with being sent to palliative care if they don't behave!

I let the interviews flow with only a cursory glance at my topic guide to ensure we'd covered everything. However, preparing a topic guide allowed some of my preconceptions to blossom. I was surprised to learn that, in general:

• Cultural beliefs are much stronger than religious beliefs with respect to understanding illness and death
• People are much more likely to die in wards rather than the palliative care unit, because they delay seeking treatment until it's so late (due to cost and fear), that they often die before a referral to palliative care is made.
• Traditional healers will often send their 'patient' to the hospital in his/her last days to ensure that the patient's death is not attributed to the traditional methods or 'medicine'.
• There is a serious social stigma associated with cancer in this country.

There is enormous cultural stigma associated with the 'bad disease'. Cancer and HIV fall into this category.  People generally believe that all cancer is contagious and if they learn of someone with it, they will often ostracise and even abandon the person, including their parent, spouse or child.

However, being sick induces compassion, so it is not unusual to see a woman who has had a tumour removed but is perfectly capable of walking and caring for herself, being aided by a relative on each side as she limps along in pretend-discomfort. As long as no one knows that she has a 'bad disease', she maintains her relationships and gains compassion.

In the light of this knowledge, I learned that the gentleman had cared for his wife for 5 years, through two 'bouts' of cancer and therapy, had refused to leave her even when his wife insisted.  He carried her, bathed her, fed her, gave her medications and generally loved on her. He lost contact with all of their friends and many family members due to fear of catching the disease, he spent all of their savings and sold all of their assets whilst traveling to and from our city from their village. He looked at me with tears and said (in Siberian) "Of course I cared for her. She was my wife. My only love. She was my everything." Even yesterday, when I asked, he did not know that cancer is not contagious. He insisted that it didn't matter. He loved his wife.

I was teary and struggled to even speak my gratitude at the end our interview. He was also teary, and I feared that I had unkindly upset him. As I began to apologise, the Dr assisting me with translation corrected me, and said that he was upset because he hadn't known that he would be interviewed by a foreigner. He was upset with the Dr for not informing him in advance, as he felt he had been ungracious and inhospitable by not greeting and hosting me with food and drink at the clinic. What an incredible, inspiring man.