Joanna Alphonso:
If choosing death for one’s child is health care, choosing life for that same child must also be health care. But how accessible is the health care choice for life for women when facing a prenatal diagnosis of severe illness and likely death shortly after birth?
Palliative care, according to SickKids Hospital in Toronto, expands beyond end-of-life care, as many initially think. “To healthcare providers, palliative care seeks to reduce the physical, psychological, social, and spiritual suffering associated with serious illness,” the SickKids website informs readers. When receiving palliative care, providers help families navigate priorities and difficult decisions, managing symptoms, enhancing quality of life, and providing psychosocial support.
The Family Research Council (FRC) published a study in March 2024, outlining the demographics of those who choose perinatal palliative care, recommendations given by healthcare providers after an adverse pregnancy diagnosis, and the experiences of pregnant women who chose perinatal palliative care. The data are based on optional surveys given to women who sought out perinatal palliative care in the United States.
The FRC survey found that most of the women who sought perinatal hospice care were white, married, religious, with above-average income. Out of 82 respondents with an average age of 38, 75 per cent identified as white, 11 per cent identified as Hispanic, and 2 per cent identified as African American. Nearly 94 per cent of women who pursued this care were married and almost 80 per cent of respondents had an annual income of over $100,000. Three-quarters identified as either Catholic or Protestant and more than 63 per cent claimed to be “very pro-life.”
This is a stark contrast to the demographics that tend to seek abortions, according to FRC. Such women tend to be “disproportionately young, single, low-income, and racial minorities.”
Of the surveyed women, most had experienced an average of four pregnancies and only about 10 per cent were experiencing their first pregnancy. Over 60 per cent of the women had a previous miscarriage, and 46 per cent had a premature delivery. More than half (55 per cent) of the women who sought perinatal palliative care were previously encouraged by a health care provider to seek an abortion and only 13 per cent were encouraged to carry to term. Only 19 per cent of women were told about perinatal palliative care at the same time that they were informed about abortion, and only 25 per cent had perinatal palliative care covered by insurance.
More than 86 per cent of children with an adverse pregnancy diagnosis died. Most women underwent much emotional hardship, relationship stress, and interference with daily life.
Unfortunately, previous research conducted by The Interim on statistics of the demographics and background information for Canadian women that seek abortions or perinatal services are unavailable as the provincial governments do not collect such data.
According to PerinatalHospice.org, there are perinatal palliative services around the world. Perinatalhospice.org is a site maintained as a “labour of love” and it lists 12 services on the website for Canada, most of which are in Ontario. The services may vary in terms of specific services offered and medical coverage.
Currently, the Ontario government is investing up to $2.5 million to build a new 10-bed children’s hospice in Hamilton. This plan will allow families to stay with their severely ill newborns.
