LifeCanada responded to two of the questions in the Federal Government's consultation on Palliative Care.
Some people think that there is stigma around the term “palliative care”. Have you experienced this? If so, what could be done to reduce the stigma?
Early care and detection are critically important, especially with regard to pain management. Stigma associated with the term "palliative care" can interfere with timely care for those who need it most. As many seem to indicate in this discussion, the solution is not to change the name, but to provide better education.
The aims of palliative care are to neither hasten death nor to unnecessarily prolong life. A formal definition from the WHO indicates that it is "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness..."
More concerning to the actual perpetuation of the stigma would, however, be the new legislation that legalizes euthanasia and assisted suicide (MAID) in Canada. By way of example, this year, The Frazer Health Authority in British Columbia issued a letter to hospice and palliative care institutions informing them that they would have to provide for MAID (religious institutions were exempted). Staff at these institutions were distressed over this policy imposition, and there was somewhat of a public outcry.
As a matter of policy, no practices should be allowed to compromise the wonderful aims of palliative care, further stigmatize them, or worse, force those dedicated practitioners out of the field of practice who object to them, and thus limit access even further.
This is a serious policy concern for all those involved in palliative care. In a recent letter to the College of Physicians in Quebec, two palliative care associations pleaded with the College over the lack of efforts and resources to make quality palliative care accessible in all Quebec nursing homes (CHSLDs), or that of physicians who claimed that some patients are turning to MAID for lack of palliative care options. (https://www.lesoleil.com/actualite/sante/acces-aux-soins-palliatifs-dans-les-chsld-inquietant-manque-de-couverture-medicale-e07482cde96f0ad5bb502811132a2796)
If anything were to perpetuate a fear of, or a stigma towards palliative care, it would be that this kind of policy would come into place, namely that MAID is offered in the same institution and at the hand of the same people who are charged with providing palliative care.
6.1: Grief and Bereavement
When is the best time to introduce grief support?
How long should this support be offered after the death?
Should it be offered before the death, and if so, how?
How can this support be shaped to individual needs?
Traditionally, this was the realm of faith communities. Caring for those at the end of life used to be the work of trained and dedicated religious - a sacred duty of the priest, to provide guidance, comfort, and assurances that they were loved. Unfortunately, in an age that has to a large extent repudiated 'organized religion' this is now being left to the state. Whereas, people once had strong communities and ways of dealing with death and the dying, many in our culture are isolated, and we must rely on either secular institutions or volunteers to address this issue. In either case, they may not be fully prepared to do so.
Certainly, support should be given before, during and after death to the grieving, and to the patient. How long would be determined by the sufferers involved. More importantly, in our opinion, is the deference shown to the beliefs of each person; their faith and beliefs about life and death. Respect and acknowledgement for the natural inclination in the human being for the transcendent must be shown. Prayer is a universal inclination of the human person who desires unity with that which is absolute and unconditional love. Whether through prayer, formal religious practice or some kind of discussion/mediation about what really is at the heart of our humanity, every person has a right to know and have their inner faith acknowledged and supported.