Hon. Jane Cordy: Honourable senators, it is my pleasure to rise today on debate of third reading of Bill C-277, an act providing for the development of a framework on palliative care in Canada.
Palliative care has long been an issue championed by senators from every political stripe. In fact, in the last 22 years, there have been six substantive reports brought to this chamber which have made unanimous recommendations on palliative care. Some of those recommendations directly led to the establishment of the Secretariat on Palliative and End-of-Life Care within Health Canada, in 2001, and the appointment of one of our former colleagues Senator Sharon Carstairs as Canada’s first and only Minister with Special Responsibility for Palliative Care from 2001 to 2003.
The secretariat played an important role in improving care for dying Canadians, and I would urge the Government of Canada to heed the Social Affairs, Science and Technology Committee’s call to re-establish this secretariat.
In fact, I would suggest that if the secretariat had not been dismantled in 2007 by the Harper government, there would probably be a framework on palliative care already in place.
How we die may not be an issue many Canadians are comfortable talking about, but for those who are dying, and their families, access to integrated palliative care is vitally important. This is why I would echo the Social Affairs Committee’s observations that patients and patient groups should be invited to participate in the development of the palliative care framework. I would also echo the Social Affairs Committee’s call for additional funding for the provision of in-home palliative care services in rural, remote and indigenous communities.
Honourable colleagues, having been a member of several committees that have studied palliative care, I have risen on a number of occasions to voice my strong support of palliative care and of the efforts of those who work to help dying Canadians live life well until the very end. I remain committed to improving palliative care for all Canadians, and this bill could be a step to achieving that goal.
However, I am disappointed to see that legitimate and well-reasoned attempts to improve this legislation have been met with surprising opposition.
I fully supported the amendment put forward by the critic of the bill. I will not repeat my remarks that I made when I spoke in support of adding a public education element to the bill, but I will say this: Palliative care has always, and continues to have, a problem with public recognition and awareness. Practitioners in the field understand palliative care. Those of us in the public realm who have worked in this area understand what palliative care is. But there is still a problem with awareness and understanding in the general public about what palliative care does for those who are dying.
In Canada, we are a death-denying society, and it is very difficult for many Canadians to discuss or even listen to discussions around our mortality. Understanding goals of care is critical to providing appropriate care. Yet in our death-denying society, those conversations are often not happening as they should.
I truly believe that it is essential that any national palliative care strategy includes public outreach and education, and without specifically addressing that directly in the bill, I fear that it will not be included in any national strategy developed as a result of this legislation.
Another aspect of the bill that I have concerns with, and that was addressed by several witnesses when they appeared before the Social Affairs Committee during our study of the bill, is that the minister, in consultation with stakeholders, works to define palliative care.
Honourable senators, we have a definition of palliative care. In committee, we heard from Sharon Baxter, the Executive Director of the Canadian Hospice Palliative Care Association, who testified that The Way Forward initiative has already defined terms such as “hospice palliative care,” a “palliative approach to care” and “advanced care planning.”
The Way Forward was a recent initiative funded by the federal government, a $3 million investment from 2012-15. This work was led by the Quality End-of-Life Care Coalition of Canada. The Way Forward developed first steps for a national framework that guides health care professionals, health systems leaders, program planners and others as they adopt an integrated palliative approach to care. The Way Forward initiative included a simple definition of hospice palliative care as “Care that aims to relieve suffering and improve the quality of life.”
The document goes on to expound on this simple definition and states that palliative care provides relief from pain and other distressing symptoms throughout the duration of an illness; affirms life and regards dying as a normal process; neither hastens nor prolongs death; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death; offers a support system to help the family cope during the patient’s illness and throughout their own bereavement; uses a team approach to address the needs of patients and their families, including bereavement counselling; will enhance quality of life and may also positively influence the course of illness; is applicable early in the course of the illness, in conjunction with other therapies that are intended to prolong life, and includes those investigations needed to better understand and manage distressing clinical complications.
Honourable senators, the National Framework in The Way Forward also defined an integrated palliative approach to care as:
An integrated palliative approach to care focuses on meeting a person’s and family’s full range of needs – physical, psychosocial and spiritual – at all stages of frailty or chronic illness, not just at the end of life. It reinforces the person’s autonomy and right to be actively involved in his or her own care – and strives to give individuals and families a greater sense of control.
It sees hospice palliative care as less of a discrete service offered to dying persons when treatment is no longer effective and more of a simultaneous or integrated approach to care that can enhance their quality of life throughout the course of their illness or the process of aging.
Honourable senators, as I have mentioned, the federal government has very recently supported The Way Forward initiative with funding of $3 million. The definition established by The Way Forward is universally accepted by palliative care experts nationwide.
Honourable colleagues, we have no need to reinvent the wheel, and we certainly have no need to legislate that the wheel be reinvented. The problem is not in knowing what palliative care is; it is in the many issues around accessibility and awareness that the framework will help address.
I share the concerns of our witnesses that redefining palliative care has the potential to take away resources from more important tasks. As stated by Sharon Baxter, Executive Director of the Canadian Hospice Palliative Care Association:
. . . we need to make sure we don’t spend a lot of effort and time in developing something that is already done.
I would like to hope that when this bill is being implemented, that the Way Forward definition will simply be accepted and the important work will begin immediately. But why even open up the possibility that we could end up with a different definition? Canada’s medical and practice palliative care experts have already agreed on a definition. Why open a risk that we will have different definitions — a definition that may be used to suit the government’s needs more than the realities of on-the-ground palliative care providers and patients?
It is for this reason that I considered moving an amendment to remove the stipulation from the bill for the minister to develop the definition of “palliative care.” However, in light of the perception that improving the legislation is akin to killing the bill, I will have to hope that my comments today will persuade the Minister of Health to adopt the definition of “palliative care” from the Way Forward initiative.
Honourable senators, it is unfortunate that this bill is even necessary. If the Harper government had not cut Health Canada’s Secretariat on Palliative and End-of-Life Care in 2007, work on a national framework and implementation of a national palliative care strategy would have been ongoing over the last 10 years.
It has now been over two years since the election of the current government, and it doesn’t appear that palliative care is a priority for this government either. It was nice to see unanimous support for Bill C-277 in the other place, and words of support are fine, but what we need, honourable senators, is action.
Great centres of palliative care are found around the country. Last week, I had the privilege of presenting a Canada 150 medal to Dr. Anne Frances D’Intino for her dedication to palliative care in Cape Breton and all of Nova Scotia. All Canadians should have equal access to palliative care services, no matter where you live in Canada.
In conclusion, palliative care is about providing the right care, in the right place and at the right time. This requires an interdisciplinary team of both formal and informal care providers who provide care in all settings — hospitals, hospices, long-term care and home — to individuals and their families, regardless of age. This framework is a good next step to the Way Forward initiative and to ensuring appropriate care and access to care for all Canadians at the end of their lives.
I look forward to a year from now when the Minister of Health must table before Parliament the report setting out the framework on palliative care.
Thank you, honourable senators.