The following statement was released to the media by Sue Rodriguez’s caregivers, the Victoria Hospice. The statement’s intent was to clear up the misleading circumstances surrounding the Sue Rodriguez affair.
“The purpose of this release by Victoria Hospice is to clarify and provide information regarding the circumstances and care of Sue Rodriguez and events prior to her death. Sue has authorized us to share facts surrounding her disease and care for the purpose of educating and clarifying the issues.
We recognize the sadness and grief that many who know Sue are now experiencing. When death occurs, there is a loss for family, friends, and community. This type of loss is experienced by many others in our community, and throughout Canada, who are dying or have died with advanced diseases as ALS, AIDS, cancer.
There are certain facts which need to come forward at this time to clarify the nature of Sue’s death and her relationship with Victoria Hospice. The issue is whether her death was based on palliative care or active euthanasia according to the guidelines produced by the Attorney General’s office.
First, Ms.Rodriguez had been registered and receiving regular palliative care support by Victoria Hospice for over 1½ years in conjunction and in partnership with others noted above. Dr. Braithwaite, a Hospice Physician, involved with her medical management, was called to the home after Sue had died. She pronounced death and notified the Coroner.
We are concerned with statements in the media that she had been in excruciating pain for months. The truth is that Sue’s comfort was maintained throughout that period. This comfort included relief from pain, minor breathing and swallowing problems. Many measures were utilized including the appropriate use of medications.
These provided excellent relief from pain and shortness of breath, did not jeopardize her condition, nor affect her lucidity. Her condition, although gradually deteriorating over time, prior to the presumed euthanasia, was stable and not near death – her symptoms well controlled, she was partially ambulatory with assistance, and had difficulty speaking and some difficulty swallowing.
In the original arguments for euthanasia by Sue and others, the picture frequently painted was of a horrible death with pain, air hunger, choking. If you note the clear change in Sue’s remarks over this past year, she stopped talking of the fear of these symptoms.
The reason for this was the good palliation and relief she obtained. Sue learned that these can be well controlled without outward problems. She was comfortable and comforted in knowing that distressing symptoms would be relieved. It is important that the misperceptions and distortions be set aside.
We have cared for many ALS patients over the past few years. None have died in physical distress. Drugs and doses used ate low to average in amount as compared to that often necessary in other diseases like cancer. Along with many Canadians, we were aware of her general desire to end her life at some point. Sue had a great personal and public investment in the issue of euthanasia. Our role, similar to all who register with us, was to provide comfort and support regardless of what other choices she might make. Her decision to end her life was not part of any palliative care treatment plan.
Second, she did not die as a consequence of comfort medications, but the administration of as yet undetermined means, currently being investigated by the Coroner’s Office. The act of providing one or more lethal drugs to deliberately cause death does not fit acceptable principles or practices of palliative care medicine. If Sue’s symptoms were out of control, the giving of sufficient medications to provide full comfort would have constituted good palliative care, even if that may have hastened death. However, Sue was not in physical distress in the time leading to her death.
We are releasing this statement primarily to distinguish palliative care from euthanasia an assisted suicide. In our view and experience, utilizing the guidelines issued by the B.C. Attorney General, Sue Rodriguez’s death cannot be construed as palliative care as had been suggested. In those guidelines, four possible categories of death acceleration are identified including active euthanasia, assisted suicide, palliative care and with-holding/withdrawing treatment.
To be classes as palliative care within these guidelines, five factors are necessary; That the intention of giving drugs in doses which will cause death are to be given to control pain; that the patient be near death with a terminal illness; that the condition is associated with severe and unrelenting suffering; that accepted ethical and medical practices are followed; and that the patient is participating in a palliative care program.
Sue was not in any physical pain, she was not near death, accepted palliative medical practices were not used in giving her a lethal dose of drugs and, although registered with Hospice, euthanasia was not part of the treatment plan at any point. Sue did acknowledge one of the five factors, that of emotional suffering. Her death was clearly due to euthanasia or assisted suicide, not palliative care.
In our view, the absence of the physician performing euthanasia to pronounce and certify death, the apparent unwillingness to be responsible and accountable for medical intervention undertaken and the lack of consultation by the physician with the current medical care provider (mandatory in Holland) unfortunately raises further the suspicion and fear of many of the public that this [assisted suicide] can and will be abused.
It has been said in the last few days that it is supposedly well known that active euthanasia is practiced routinely in hospitals and homes. It is unfortunate that the term ‘dying with dignity’ is being used so much in relation to assisted suicide. There are several thousand people who have died in our program. They and their families have been deeply appreciative and feeling very much they have lived and died with true dignity.
More correctly, we believe this term has been used not in relation to dignity, but to the ‘rights’ and autonomy. Sue Rodriguez fought courageously for what she believed in. Excellent palliative care allowed her to live and remain comfortable through this campaign. Eventually, she chose the course she believed in. Society will later decide whether this is acceptable for others, but most will acknowledge her gracious tenacity in that pursuit.
At Hospice, many patients do not always make the decisions we would. Our role is to care for each as individuals, to see the worth and dignity in all, to offer comfort and support at all times, to respect autonomy, and to remain committed to the highest excellence of care possible. In caring, we also learn about people, the process of dying, the value of good palliation, the need to be safe while dying, the value of life itself. We all have learned from Sue, but we do not all have to walk the same path.” [Signed] Dr. G. Michael Downing, Clinical Director, and Dr. Debra Braithwaite, Hospice Physician.
(Taken from the April/May 1994issue of the Compassionate Health Care Network newsletter.)
