Notes on an Outrage I
Three stories culled from the news stood out in my mind for this week’s blog.
In the first piece, a family from Sudbury, Ontario, Canada went public about how they were treated when seeing their dying mother in hospital. The family claim “...they were barred from seeing her during some of her final hours because they were prolonging her death.” The husband and children were told “...if they didn’t leave her alone, the spirits wouldn’t come and get her.” The family were also “...astounded when, on June 4th, a sign was posted on the door of Irene’s private room telling people to check at the nursing station before entering. When they did, they [the family] were told they couldn’t visit her.” This was at the palliative care ward of the hospital.
The family were told “...they shouldn’t touch her or talk with her because it would keep her from passing on. Seven hours later, Dube [the woman’s husband] decided he’d had enough waiting. The family entered her room and found her “in agony, pain and her medication had run out.” So the woman was by herself in pain, behind a closed door where her family was not allowed. Had they not gone in, would the woman be in pain still? It is hard to know because Irene died on June 6th 2013. “A spokesman for the hospital said it is their policy to allow families as much time together as possible...”
Let’s review: this happened to a dying woman and her family; she was in a palliative care ward; the nurses or other caregivers arbitrarily decided that her family was not allowed into her room; she was behind a closed door with a sign saying, in effect, NO ENTRY to the family; and she was allowed to remain in pain. In a palliative ward. What if the family had not gone in? Would Irene be in pain still? Would she have died alone?
Would those nurses (I am assuming here) be polled and found to be in ‘favour’ of dying with dignity, and use this as a way to force the issue? There is no indication of whether the family were a problem; the hospital has not commented, but if this were the case, surely the police would have been called. Since the hospital’s only comment is that they wish to speak to the family members, it seems that there is more to this story than meets the eye.
My issue is not just with this woman and her family’s treatment; it is with the notion of not conversing or touching the family member to help her “...pass on...” Pass on to what? Is this New Age gobbledegook imposed on the family? This seems the case. I say the nurses at this ward need a refresher in palliative care provision.
[Source: “Kin Kept from Dying Woman?” Carol Mulligan, QMI Agency, Toronto Sun, Friday June 28, 2013, p. 36]
Notes on an Outrage II
In a small item from the Metro Free Paper: a newlywed couple was told that rules and regulations didn’t allow them to live together because they were under care. Because they needed assistance in living, they were not allowed to live as a married couple. Rules are rules, after all. After a US federal civil rights lawsuit, “...another agency stepped forward to offer them space...” So a couple needing assistance because of mental disability are denied a life together on the basis of that same disability, even though their marital situation is legal and accepted by others who are not disabled in the same way? No wonder the couple won their lawsuit; I personally wish Paul and Hava Forziano all the best in their new marriage and am glad they won.
If this is what it is like for a mentally disabled couple, why is it that we are not hearing more about this situation? Why is it that there are different rules for the disabled versus those who do not have such disabilities? This is the 21st century, after all; I thought we had gotten beyond the paternalism of state imposed limits to life...I could be wrong...
[Source: “Disabled Lovebirds Move in Together”, Metro Free Paper, Toronto, Wed July 3, 2013, p. 9]
What we have here is a failure to get the point across...
The following story is a short piece about palliative care and what people think of it, according to a doctor involved in such care. In this Toronto Star piece, entitled, “Many Cancer Patients Expect Palliative Care to Cure”, in a nationwide American survey of patients with lung cancer, “...four out of five thought the radiation would help them live longer and two in five believed it might cure their cancers.” The doctor leading the study pointed out that radiation therapy was meant not to cure but to relieve symptoms, further “...radiation treatments are intended to improve quality of life for the time that remains...”
This tells me patients and families are not being told about the terminal nature of their illness; nor are they told explicitly what palliative care is; and those expectations are left dangling. This might be because we all have an inborn fear of dying. The disconnect between expectation and outcome might cause people to default to ‘wanting’ assisted suicide and that is based on misunderstandings.
[Source: Toronto Star, Tuesday, July 2, 2013, “Thrive”, p. E6., “Many patients expect palliative care to cure.”]
The first two stories point to a paternalistic orientation on the part of those with social power toward those who have none. In the first case, a dying woman is kept from her family; in the second, a mentally disabled couple is kept from each other. In both cases, the right to freedom of association has been trampled, one in Canada and the second in the US.
The third story outlines how we do not communicate basic medical information to people in serious situations; but I can think of a simple reason: intimidation. If a family member is dying and the family is agitated, suggesting that there is nothing more to do could open a hospital or care centre up to a lawsuit. Or the family might not have the right supports to understand the situation. Or the couple could be mentally disabled and the staff think they won’t understand.
Before we go talking about medically provided death, maybe we should think about how to provide better basic care, rather than acting arbitrarily against families. However, given the stories I found in the past while, this seems an unlikely possibility. This is because there is, at base, a simple lack of humanitarian respect for the other and that happens at a time when people are at their most vulnerable. But if people weren’t vulnerable, they’d be able to resist the outrage, wouldn’t they?